The life and death(?) of a special interest: navigating fluctuating autistic ability, passion and motivation

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Preamble

Back in June/July I started what was meant to be a 3-part series on my autistic burnout/mental health episode. I wrote two posts back then, but it’s taken me until now, November, to write the third and final instalment (which by now has actually morphed into a fourth instalment too).

Whilst I don’t think I’m ever going to be quite the same way I was prior to June, I have more or less recovered from the experience. My mental health is still fragile at times, but generally it is alright. And I’m now in a place of being able to reflect on what happened with greater clarity and perspective, feeling I’ve learned some things about what I want and don’t want, what would be good and what would perhaps be less good. Now it’s simply a question of figuring out how to work towards these wants and needs whilst remaining emotionally well and balanced in pursuit of them (which, of course, is far from simple at all). Basically, of turning realisations into results. So less thinking, more action. Less writing, more outing. Less comfort zone, more ring of fire kinda thing. Eek.

As I already alluded in the July post, I came to 2 main realisations following the burnout, which can be summed up as follows:

– People!

– Purpose?

Essentially, I realised that I want to dedicate more time and effort to expanding my social life. And, second, I’ve been grappling with the question of work and interests and finding purpose, that is with how I spend the non-social (or less social) part of my life. 

The social side of things is not something I really want or need to blog about (at least not for now). My aim basically centres around trying to grow social connections and making that a higher priority in my life than it has been to date. It’s challenging, but it requires more talking and doing (precisely why it’s challenging), as opposed to sitting at a computer thinking, writing and blogging. It’s also a major reason why I’ve stepped back from the work I was doing around autism (much more on this below).

What is of great relevance to this blog, and to the portion of my life that is about thinking, reading and writing, is the question of purpose. And, related to this, the question of work (or of no work/non-work), and of special interests (and non-special interests or of ‘special interest death’ I guess :’o).

Before we dive in, a couple of notes:

Re. the term ‘special interests’ – This is the most commonly used phrase for referring to autistic interests that are above the (neurotypical) norm for an interest in terms of focus, passion and engagement levels. However, I have come across some backlash against the term (e.g. that it sounds a bit demeaning and infantilising, see here for example). Whilst I definitely sympathise with these views, I still feel compelled to use the term. I’m a creature of habit and it’s hard to shift from using a phrase that has become so etched in my mind. Above all, though, I’m not sure there is a huge amount of ill feeling against the term ‘special interest’ within the community (anyone feel free to correct me if you know otherwise), and probably quite the opposite? I also use the abbreviation SpIn because it’s fun and faster to type, along with ‘intense interest’, ‘passion’, ‘hyper fixation’, ‘obsession’ (which personally i do like) in order to switch it up a bit :p.

Re. doing research for this post: I did zero (0) research or reading of other people’s stuff whilst writing this. Unfortunately, that felt a little too much like SpIn engagement for my brain to take (and it’s particularly hard for me to engage with other people’s stuff, which I regret, because it’s so interesting… but that’s precisely the problem, it’s too interesting and then I do too much and end up losing myself in it all). I do, however, remember reading two things a year or two ago on this topic which clearly stuck in my mind and which I may as well link to here: Autistic and Cheerful on the difficulties of being an activist. And a post by Briannon Lee titled ‘that sad and scary place between special interests’ (which i actually cannot link because it’s disappeared off the internet, but i reference it a bit later). 

Also, my blog posts have become so long (9k words? fml :S), that they now benefit from having a contents. So there’s that. This helps me with the writing and editing, especially because I struggle to write linearly, and it may well help readers with navigating it too. Given the dissertation-sized length, I realise it’s hella presumptuous of me to assume anyone might read the whole thing. But I needed to write this, I can’t seem to help writing so much, and chopping it up into separate normal-sized chunks just feels somehow wrong to me. So here it is:

  • A brief history of my SpIns
  • The life cycle of a special interest
  • Finding purpose in social justice SpIns
  • Is it possible to resurrect a special interest?
  • SpIn death, burnout and mental health loopages
  • SpInning for fun vs. work

  • What am I going to do about all this?

A brief history of my SpIns

So what’s been the story with special interests in my life up until now?

In the early days of discovering autism/being autistic, I didn’t fully relate to the stuff about special interests. Actually, I think I even concluded that I’d never really had one. Turns out that reflected a big time lack of self-awareness… And upon further reflection, I realised that my intense interests had pretty much coincided with my favourite school or uni subjects, hence making them pretty well camouflaged. I’m not entirely sure why this happened. Because it seems fairly common for autistics to develop interests that are quite specific, even niche and also self-initiated and self-driven. Whereas mine were pretty broad and more or less in line with whatever I was supposed to be focusing on for school or uni. Maybe I lacked the curiosity of mind to discover my own sources of interest. Or maybe I was lucky to happen to love what I was being taught, who knows. 

For me, at school, this was various aspects of Geography, and then by uni I was pretty consumed by all things International Development. The latter lasted two, perhaps three, years. I tried to keep it alive for about another year (which involved crazy acts like considering accepting a place on a PhD course to study something which I actually no longer cared for), but failed and eventually moved on without too much thought. This death might have been because my course had ended, so I was no longer being fed information, nor did I perhaps see the point in working so hard at it (getting good grades was still a really strong motivation, despite the intrinsic pleasure that was undoubtedly fuelling me).

More importantly, perhaps, during this time I was also in the process of gaining a new special interest, this time in personality psychology. It took me a while to realise that I was gaining this new interest. I was working FT at the time, and had very little spare energy to indulge. But after I left my job (which was for many reasons) I became totally immersed and started proudly and confidently declaring that I’d found my passion and purpose in life. I researched and wrote, made promises to myself and even a couple business plans of sorts to launch into the world.

That lasted two years. Again, it seemed to fade naturally in part, but also because a new interest was again on the horizon. And this time it was big. Far bigger than the previous two (which is saying something). There was no mistaking it either this time. I knew full well what was coming because I was discovering what a special interest was. I was discovering autism, and autism was discovering (and in all honesty, overtaking) me. And now I could recognise it for what it was, which seemed to make it all the more awesome. I became consumed as before, but also like never before. The intensity was a little insane. The insatiable thirst for knowledge. The addictive feeling of learning something new, the collecting and categorising, highlighting and synthesising. The reading, writing, researching, brain-buzzing, emotion-swirling intensity of it all. What is more, I was utterly convinced I’d be carrying on like this for the next three decades, minimum.

Now, I really really really do not want to have to say this. But…

This lasted 3 years.

Almost exactly.

So clearly, the pattern plays on.

And eek, this is actually the first time I’ve properly admitted it to myself:

My intense interest in autism lasted 3 years.

In other words: It is no more. *cue internal panic* D:

But, but, but, I find myself asking… Is this truly truly the case? And if it is the case, is there anything I can do about it? Moreover, is there anything I even want to do about it?

Let’s explore! 

 

The life cycle of a special interest

It’s curious that every one of my intense interests (which, to be fair, only number about three) have fizzled out within two to three years. It seems like more than mere coincidence to me. I know it’s not ‘an autism thing’ generally-speaking, that passions should automatically start to die at the two year mark. Some of us have interests that last only a few months, others an entire life time, and everywhere in-between. The two/three life cycle could well be an autism-specific-to-me thing though, and maybe many of us do have repeated patterns like this, whatever the precise time spans involved.

I often wish that I could have an intense interest that would last forever. Not only do I wish this, but each time I gain a new one I am convinced that this is precisely what will transpire. That I have gained a passion and purpose for life which will never die and that I don’t have enough time or years in my life to ever be able do it justice, but I’m damn well gonna try. Absolutely convinced! However, now that I’ve spotted the pattern of how this tends to play out for me, I’ve become much more wary of this belief of mine and better attuned to the more realistic, evidence-based process that is likely to unfold instead. (A case in point: I am pretty sure I’m developing a new special interest, the fourth one in my life, just as the autism one has been fading :0)

I’m not sure ‘fading’ is the right word though? Certainly with my autism SpIn, it was a case of one day I am doing this at 110%, then the next day there was literally nothing there. I should say, though, that this did involve quite particular circumstances (discussed more below). Also, if I’m honest, I’d been feeling a gradual fizzling out of the love in the months prior, even though my engagement levels hadn’t dropped (and in fact were higher than ever).

But why does the loss of a special interest pose any sort of problem? Especially if there happens to be another one right there waiting patiently (or not so patiently) in the wings as replacement. If we no longer feel that burning urge and passion to engage, then what’s the issue with letting go?

Many, if not most of us are perfectly happy where our SpIns are concerned. They bring us joy, we have sufficient time to do them, we often do them a lot, but not so much that other important things get sacrificed. Certainly, many of us will struggle at times with managing our interests in the sense of needing to pull back and do less when we really wish we could do more. Life doesn’t always make doing so much possible or very easy or even necessarily a good idea. So sometimes it can be about trying to rein in the SpIn, fitting it around everything else and finding balance, whilst letting ourselves indulge as much as is practical and as helps our wellbeing. Something which I feel is less talked about, though, is the very opposite of the above: that of wanting to resurrect a lost passion. And more specifically, trying to navigate a situation whereby the heart says ‘no’ (but also a bit ‘yes’) and the brain says ‘yes’ (but also a bit ‘no’)… Or maybe I’m just speaking for myself about such internal conflict? :S

I’ll explore this debacle more below. But for now, I wanna say this:

The truth is, I’m quite sad. And disappointed. And more than a little resentful. Sometimes I’m even kinda raging at myself. If I wasn’t, if I couldn’t care less that I’ve stopped engaging with autism things, then there’d be no problem. I could move on without too much thought, live and let die. But there is a problem, and multiple ones as well. Because I happen to care. And a whole lot too. I’m going to try to explain why there are problems and why I care. (And then hopefully see what I might be able to do to make it all nice and better *fingers crossed*)

(On the plus side, though, I’m finding I have A LOT of motivation and feels for writing about this autism SpIn death business. Dare I say, I’m getting special interest vibes in relation to writing about the death of said special interest… which is perhaps something at least? :p)

 

Finding purpose in social justice SpIns

There’s another pattern at play across my intense interests: they all have to do with social justice. This is very clear with numbers 1, 3 and 4 (poverty reduction, autism, and LGBTQ+ issues), perhaps less clear with no.2 (personality psychology stuff… although I think Susan Cain of the Quiet Revolution did proclaim the cause as one of the most important social justice movement of the early C21st? I’m not sure though…). And more generally, there’s plenty of indication that gravitating towards social justice issues is a pattern that plays out in the autistic community more widely. Common examples tend to include autism itself, animal welfare, climate and environmental issues, feminism and LGBTQ+ rights.

What might explain this trend? There are numerous factors, which may include hyper-empathy, a need for/love of justice, a need for/love of fixing problems. Often it is some combination of sheer intellectual curiosity at how the actual f— such problems have come about and how they might be solved, merged with an acute felt sense at the unfairness and absurdity of these problems. They are absurd because of the bigotry and greed often involved in making them problems in the first place, and yet they are also highly complex, often seemingly intractable issues as well, so they appeal to our problem-solving sensibilities.

The other obvious factor is that as autistic people we occupy a disadvantaged minority group status ourselves. It’s understandable why many of us acquire SpIns in autism: we want to better understand ourselves, and by implication others as well; we see and personally know the difficulties and injustices that can come with being autistic in this world; we want to help others understand and we want to make society a better place for our kind. In terms of our involvement in other minority groups and rights movements, there are many common overlaps with the autistic community which help explain this. Being LGBTQ+ is a big one, so are other forms of neurodiversity, as well as chronic illness, physical and intellectual disabilities.

And even if we don’t personally fall into any additional group besides ‘autistic’, it is often the case that the experience of being in one minority group is a big help and motivation in relating to the experiences of other forms of disadvantage. It can provide us with the empathy and drive to involve ourselves in social justice even if the specific issues don’t concern us personally. There are a lot of commonalities in experiences across various minority groups. Patterns of discrimination and prejudice are just that, patterns. So they tend to play out in similar ways, regardless of their precise target.

For me, though, I think it has to be personal (which is one reason I so admire people who advocate on issues that aren’t personal to them). Aside from my first SJ special interest – where I was looking at poverty reduction strategies in Africa (so pretty far removed from my daily reality) – all my SpIns have been highly relevant to my life. In fact, this is what made them SpIns in the first place. I made new discoveries about being part of these communities. This provided big time motivation to learn as much as possible and to become highly emotionally invested in the process. It became hugely important in developing self-understanding, learning about others’ who are more similar to me than most, and it was great for mental health and self-esteem stuff too (you realise you’re normal in your difference, there are very good reasons for it, and you’re not alone, etc). As I touch on in the subsequent post, I am very into self-improvement (or at least the idea of it), and I seem really to need any interest of mine to feel personally relevant to my life and to be of some use in improving it. I get a lot of hope and motivation from thinking that each day has the potential to be better than the last thanks to helpful new things I’m attempting to learn or do for myself. Self-improvement doesn’t work at all linearly, but it can help move us in the direction of an upward spiral at least. And I find this to be really good mental health wise. Even if stuff is going really badly, being able to focus on making it better is the number one thing which seems to help me. I think I’m getting a little diverted here… But this does also link to the broader sort of purpose around helping others. Because lots of people deal with similar issues, even if we are talking only a minority of the population (which is the entire point where social justice issues are concerned of course). 

This need of mine for personal identification is also one explanation for my SpIns dying. Studying poverty reduction was fascinating to me and I felt a lot of much empathy in relation to it all. But ultimately, I suspect the main reason it faded is because it felt too distant from my lived reality (and especially at a time when I really needed to start finding some answers about myself). When I was all into the personality psych stuff, that really helped move my self-understanding in the right direction, but it was still very far from enough. So I dropped it as soon as I discovered autism provided the complete explanation. And now, yes, I am still autistic as ever :p, but I’ve since discovered I am also other previously unknown things, like queer, as well as other things i’ve long known about myself but feel like coming back to and finding more balance within. In sum, the rise and fall of the interests parallel my own process of self-discovery until I eventually reach a point of normalisation, where what is at first a huge identification and perhaps (a very useful and understandable) over-compensation starts to settle and rebalance with other aspects of my identity and interests.

I’m being reminded here of a wonderful YouTube talk about autism by Christan Stewart-Ferrer. He suggests that the post autism discovery/diagnosis journey often encompasses a distinct set of phases as self-identity shifts with increasing knowledge and growth. Below is a snapshot of the ‘self-integration’ phase (the ‘get involved in ASC aspects in a more subtle fashion’ is screaming out at me in particular!). Along similar lines, this blog post by Julie Dachez discusses her rebalancing of identities post-dx (apologies because it’s in French… but her illustrations do kind of say it all :p)

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There’s another aspect about SJ interests and pursuits which can make them vulnerable to fading: burnout. This relates to the emotionally taxing nature of inputting a lot of stuff into your head about ableism (or homophobia, or racism or environmental destruction, or whatever it might be) and of encountering brick walls over and over again when trying to make progress against these things. It can easily become too much after a while. I can see this, and I even felt it a bit, despite the fact I barely even got started with anything advocacy-related. For me, it’s not that I can’t engage with ableist or distressing content. Actually, it’s the opposite. It consumes me. Because I start caring too much. And it’s not always so sustainable to be consumed. I found myself getting overstimulated and angry and perhaps overly critical. It’s frustrating when you want to scream at people to stop doing something, but there’s no satisfactory outlet, so there’s nowhere for those emotions to go, and it makes you start to question whether things can ever change. With SJ causes, the work is never done. In a way, this makes them fantastic and bottomless sources for curiosity, passion and purpose. But equally, the realisation that the work is never done, can easily bring on feelings of pointlessness and resignation ):

And then, with the being members of one or more minority groups ourselves (and even more so as disabled people), our spoons and resources are already likely to be lower than your average person. Activists are vulnerable to burnout, especially if they are disabled or dealing with discrimination of their own, and especially when discrimination or accessibility barriers are cropping up and being exacerbated through the doing of the activism work itself.

To round up this section: Autistic SpIns in social justice are fairly common! This is awesome and we should be proud of ourselves for doing this sort of work (whilst acknowledging it certainly isn’t for everyone, interest-wise or spoons-wise, and that’s perfectly okay too)! There are clear difficulties involved in doing this work, such as the risk of burnout, or of simply losing interest, identification and motivation. There is zero shame in this. But equally, for those of us who want to continue in spite of struggling, we need advice and support and community to help us do so.

 

Is it possible to resurrect a special interest?

Here, it helps to focus on why I have lost my autism interest. First, it’s important to note that this process of losing was not a choice. This is because acquiring a special interest is not really a choice either. I don’t pick them, they pick me. (Though there may be some grey area here..? As in you choose to do something and it becomes a special interest through the doing of it. So whilst you don’t consciously make something a SpIn, you did choose to start engaging with the thing… so.)

There’s clearly something more than a little ambiguous and uncontrollable, if not entirely mysterious, about how SpIns work. Something very chemical and physical, an addictive quality, almost drug-like, but in relation to information (or perhaps a skill-set) rather than substance*. We might feel a surge of relief and buzzy joy rushing through our body and brain. There’s this craving, a very real need. When I was at the height of my autism interest, I noticed that I’d crave these ‘hits’ every couple hours at least. After a while of not reading something, I’d feel this vague but undeniable discomfort and an irresistible pull towards Getting More Information!! I’d feel instant satisfaction as soon as I did, and then the craving would pop up again a few hours later. That stuff can’t easily be controlled, nor easily faked (or at least not at the expense of mental wellbeing I suspect).

(*I feel it might be a little insensitive of me to draw out the parallel to addiction. So forgive me for this, but it has helped me understand a little better. For example, I heard somewhere that addiction is about wanting/craving something without (necessarily) liking it. I think, for me, this SpIn death business has been the precise opposite: I like it but I now no longer want/crave it. So essentially, I think it is a situation of wanting to want in the absence of actual want.)

In other words, there is likely some sort of chemical attachment process going on that feeds an initial interest, causing it to grow into something intense and spark those unmistakable special interest feels of hyper-focus and fascination and motivation and pure unbridled joy :D. I suspect a lot of this might have to do with newness (although also, really not, because many of us love nothing more than the familiar and repeated when it comes to our SpIns (ah the contradictions of autism :p)). But for some of us, myself included, there is a craving to learn new things, and it has to be new. At the start of a special interest almost everything I learn is Brand New Information, and this is a large part of what makes it so thrilling. As time rolls on, and I approach the peak of the interest, I increasingly start to see the same things repeated over and over. This is also thrilling, because pattern-seeking and confirmation and growing confidence at understanding things. But then, there comes a point where learning new things is not so frequent. There’s still a hell of a lot to be learnt, but it takes more time and effort to do so, and a lot more wading through things you’ve already seen a million times. During year 3 of my autism SpIn, it became increasingly rare that I would learn something new. It still happened, of course. But they were smaller things, less mind-blowing. I’m guessing specialisation and the development of expertise is the key if you want to keep discovering newness about a topic you’ve exhausted in a more generalised way. But I somehow never did that with autism. Nothing specific grabbed my interest above all the rest. The thrill for me was in trying to know about every aspect of it. Unfortunately, this is not really so possible. It also comes at the expense of deepening knowledge.

It’s not all about the newness though, not at all. Because I’m still very far from knowing much at all and there clearly is a lot of newness out there waiting to be discovered (or created). I still have so many questions and confusions, everyone in the field does (and if they don’t, they’re probably doing it wrong). I simply reached a point where I’d achieved some level of satisfaction with what I knew and then lost my previous motivation to seek out newness and keep searching for those answers. And now, honestly, when I do find bits of new info, I no longer feel as excited about it as once )’:

I’ve lost a lot of that raw chemical buzz that motivates and propels. Sure, I still get feels from time to time but they are watered down, dampened, less at the forefront of my thinking. Moreover, some new emotions have crept on in, and honestly many of them are a bit bad. I was and still am a bit surprised by and guilty for these negative emotions. How something so joyous could completely flip out on me and become more a source of bad than good? I’m not sure I’ve heard much talk about autistic people growing to resent – as opposed to simply fall out of love with – a (former) SpIn, but I’m sure it must happen. And then I remembered Briannon Lee’s post from a couple years back (which I mentioned in the preamble). It appears to be offline now, but here’s a passage I’d saved from it (perhaps i was subconsciously anticipating this outcome at the time :S):

‘Recently, a restless anxiety was consuming me. I looked at my podcast lists searching for something to listen to on a long car trip. I felt repulsed by every single podcast there. I had somehow saturated myself on every topic, and the thought of  another chirpy unschooling podcast, motivational wellness podcast, or reflective spiritual podcast made me feel sick. Later I noticed my kindle was full of unfinished books that I couldn’t bear to read… I am living in that dreadful space between special interests. I never realise until I am there. Until I find myself feeling sick with disgust at my old interests and desperately seeking something to latch on to.’

So it is possible to have feelings of repulsion, sickness, dread, and disgust in relation to a previously much-loved SpIn? These words are quite extreme. But they’ve honestly matched how I’ve been feeling these past few months. I would go as far as to describe it almost as a physical sickness at times. And reading that passage makes me think perhaps I am not so unusual in this. And I guess it even makes sense? Love can turn to resentment in other contexts, so why not this one too? It would be an interesting thing to unpick further, in terms of why feelings of disgust and repulsion arise for some of us, whilst others can move on with seeming ease, without so much as a backwards glance.

 

SpIn death, burnout and mental health loopages

There are two dimensions to the burnout which led me to suddenly, and perhaps irreversibly, stop engaging with my autism SpIn – 

  • The cognitive – this consisted of many weeks of literal inability to process information through reading and a total mental block when it came to thinking about SpIn stuff. Whilst I still don’t feel totally back to normal, I have now regained a large part of this capacity.
  • The emotional – this is perhaps the more intractable side of the problem. It’s all rather confused and messy, including a loss of of chemical feels, a loss of caring but perhaps combined with too much caring, which creates fear about re-engaging… I discuss this in way more depth in the final section of this post. 

It is a very grey area the extent to which my SpIn loss can be attributed to the onset of burnout/mental health issues (which had a trigger external to the SpIn, see my previous post for more), or alternately, more to a natural fade in the chemical feelings of attachment which I described above. Perhaps I was always going to live through this loss eventually. The burnout episode may merely have intensified and speeded up what was going to be an inevitable outcome.

This one day in June, I was busying away with research and book-writing, pretty much 100% invested and with zero idea of what was about to go down. The next day I stopped… And the stopping continued for a few more days after that. It was unheard of me to stop, especially in such unplanned fashion. But I had no choice in the matter at the time. It was a lack of ability, pure and simple. My capacity for processing external things, any things, but especially this stuff, was completely shot.

Before I knew it, it had been a couple weeks, then a month. By then I was questioning if I even wanted to go back, or whether I should, presuming I’d recover the ability again sooner or later. Then it became a weird tangle of ‘Is this a motivation issue, or is it an ability issue?’. Did I no longer want this, even if I had the ability to keep going? I eventually admitted to myself I had a motivation problem, in that even outside the effects of burnout, anxiety and depression, I might well not be able or wanting to continue down my planned path.

I’d decided things needed to change, you see. I felt very wary about going back to the autism work, at least in the same fashion or to the same degree of intensity. It all became rather messy. Because a lot of my anxiety/depression feels were related to the issue of how I’d been spending (and not spending) by time, which directly implicates the autism SpIn, given how it had basically taken over my life. I realised I was somewhat regretful and resentful about this. I was prompted into a wake-up call about my priorities in life: what I’ve missed out on, and what I want more of going forward.

But at the same time, I had loved doing this work. Even if it didn’t always feel like fun (and let’s face it, we’re talking activities such as reading neuroscience papers here), it provided me with big time sense of purpose and satisfaction. I can’t say for sure how the past three years would have been without this, but I strongly suspect they would not have been as good as they were. So perhaps some of my regret and resentment is rather misplaced (even if it is acting as a useful signal that it’s time for me to move on, or grow in some new direction).

To this day, I am still unsure how much stopping my autism SpIn intensified (or perhaps even played a large role in creating) the depression of those few months. SpIns constitute a massive source of pleasure, comfort, motivation and purpose for autistic people. Taking all of that away, and especially in a context where additional stressors or triggers are already present, seems like a recipe for the perpetuation of bad feelings.

In many ways, of course, this is precisely how depression works. It can become a self-reinforcing spiral as it sucks away ability and motivation to do the very things that are probably most likely to help keep it at bay. I knew this. So I told myself getting back into the autism stuff might be a smart move in trying to get past the depression. This was back in July. It’s now November, and I’m still yet to return (unless writing about the death of a SpIn counts as SpIn engagement hah)

There’s good news though. The depression is so much better now! The perhaps less good news: this clearly had nothing to do with returning to my autism work. In retrospect, there are other very clear reasons to explain the improvement in my mental health (including something as simple as the passage of time). But the fact it didn’t take re-engaging with autism is perhaps something for me to pay attention to.

I’ll finish this section with another extract from Briannon Lee’s fab post:

”If you know an autistic person, adult or child, know that the space between our passions is always terribly unsettling. Sometimes it feels bleak, for there is nothing to be excited about, nothing to dig in to. Sometimes it feels lonely, for we have lost our way of connecting with other humans. Sometimes it is scary, because we have taken away the only thing holding our mind tethered, keeping anxiety, or mania, or paranoia, or depression at bay.”

The take away: SpIns are important y’all (as if we don’t already know :p) But also: they might not be everything, because balance ^_^

 

SpInning for fun vs. work

Autistic special interests are notoriously good fun. We want to do them, we need to do them, we often cannot help but do them. And they provide us with an overall big source of joy and satisfaction. They meet most of the criteria for fun in our books, even if they might not always look like what is deemed conventional fun to other people.

Some of us are lucky enough to carve out a career or source of income through a special interest. In these instances, I’ve wondered whether turning a SpIn into a job risks sucking much of the fun out of it? Or… are these lucky souls truly living the dream of SpInning 9 to 5 and getting paid for it?? It’s often the case that turning a passion into a business or having to work a 40+ hour week at something you love, can simply start to make you love it less. Autistic people may well fall inside this phenomenon (although I can imagine that many of us might be more immune to this process than most).

For myself, my interests have been fun for sure. But they’ve also occupied a lot of grey area between fun and work*. This is because I have a tendency to turn my interests into what looks like a FT job, except that I don’t get paid (a downside), nor do I have to leave the house (definite upside). The time spent has a lot to do with this: my interests consume me, I want to do them all the time, so in terms of answering the question ‘what do you do?’, well, this is quite literally what I do. The nature of my interests also has a lot to do with this: they are about consuming, collecting and creating information around what are quite serious and necessary topics. It’s a lot easier to convince yourself your SpIn is your job when you are spending the day reading reams of research, mulling over theories, trying to get published and seeing an important cause and means of trying to help people (as opposed to, say, spending the day in bed watching a SpIn TV series – awesome as this undoubtedly is (;). (Although, for the record, I do have significant amounts of guilt around spending time on work that isn’t really work. Despite it seeming like work in many ways, it doesn’t fulfil basic criteria for (what society deems) work, like being remunerated, or working with others, or answering to a boss and doing what you are told.)

And the longer my interest goes on, the more it starts to look like this – like work, and not fun. And it’s not only about what it looks like from the outside. It’s about what it feels like on the inside too. It becomes increasingly obsessive over the course of a couple of years, until something snaps and I seemingly cannot do another day of it. It starts to become less ‘I have an unstoppable desire to do this’, more ‘I have an unstoppable compulsion to do this (and I’m really not sure whether this is either good for me or sustainable in the long-term)’. I’m not quite sure at what point it starts to tip more towards compulsion, or why this is. But the feeling is quite unmistakable, if hard to accept (or at least it was for me). Compulsion is where the thought of stopping or letting go seems impossible… and yet the thought of doing so increasingly comes to taste a lot like freedom. (But then, to myself, I am like, ‘What freedom though?’ ‘Freedom from what?’ and ‘Freedom and then what?’ Freedom in itself, by itself, with nothing else, is not enough, nor really is it anything at all. I need to do something. I need to attach to something.)

It’s a tad frustrating that this cycle keeps playing out in my life. I mean, I know it’s not uncommon for autistic interests to die like this. And that’s okay. Its perfectly fine and natural. Many of us will likely be able to move onto to new sources of fun, often with great enthusiasm. The problem is when we have made it our work (or we act as if it is our work), and then all of a sudden we simply can do it no longer. This might entail losing a source of income, social status, an actual job, letting others down, letting ourselves down… For me, the fallout is pretty much all in relation to myself: the broken promises I made to myself. Whilst I do have this sense of external pressure and obligation, it is entirely imaginary and I hadn’t actually progressed far enough with the work for it to really impact on other people (although it was heading that way via the publishing route, which was perhaps another thing that made me pull back when I did).

I am questioning, though, whether losing enthusiasm for autism stuff is really a legitimate reason to pack it all in? Might I be expecting too much with feeling that I need to love what I’m doing in order to do it? Isn’t that in fact entirely unrealistic, especially over the long-term? Presuming non-autistics lack the ‘special’ in special interests (the poor souls), then doesn’t the autistic loss of that ‘special’ simply bring us back down to regular levels of liking things? And the NT world seems to (more or less) get by working with regular level intensity love for things (if that), so shouldn’t we as autistics expect ourselves to be able to do the same?

This is an interesting question which points to several wider and over-lapping issues. That of autistic motivation: If we are by nature more intrinsically motivated than most, then it may well be harder for us to keep engaging with a declining passion – whether in the form of paid employment or otherwise – when all the other extrinsic reasons for doing so simply mean less to us. There is also the even more basic issue of ability: many of us may simply be unable to keep going with something we no longer feel for, even if we very much need to (as in for a job) or even very much want to (brains are weird). If we are wired to be quite all-or-nothing, then we may well find it hard to maintain moderate level of interest and engagement in something if the ‘all’ becomes no more (so it’s either ‘special intensity’ or ‘zero interest’, with ‘regular-level liking’ being harder to come by). 

A lot of this stuff will have to do with individual circumstances, and also with the degree of loss (I’m sure SpIn death comes in many degrees after all – from a slight loss of that burning passion but still liking and revisiting, to total rejection and even disgust). Trying to work out how you feel about a declining SpIn, what’s changed about your feelings and what hasn’t, whether it might still be workable and what might need to change to make that happen, are all likely to be questions worth considering, tough as they undoubtedly are.

*By ‘work’, here I am referring either to something one needs to do (for financial/standard of living reasons) or that one feels obliged to do (i.e. it’s not strictly necessary in terms of survival, but there is a feeling of want or compulsion to do it for whatever reason – perhaps societal expectations, pressure from specific others, pressure from self in the form of emotional commitment or moral principle, and so on). I’m actually very interested in the concept of work, particularly ideas around bs jobs, post-work society, the 20-hour work week, basic income, idleness, etc – and the intersections with disability of course – so I may well blog on these topics in future 😉

 

What am I going to do about all this? Reasons to go back vs reasons to let go.

Despite my negative feelings and some degree of inability, I’ve come to realise that I am very resistant to letting go of my autism SpIn. This is unsurprising given that it’s been quite a huge change, from 100% investment to complete ghost town in terms of activity. I’ve attempted to list out the reasons for this resistance below. Some of them are potentially important, i.e. reasons to consider picking it back up again, whilst others are less good reasons for going back, and may point to a reality that requires accepting the loss (but also in some ways the growth it has come from and resulted in) and to simply move on. 

Reasons I don’t want to let go:

– I’ve invested so much time and energy. It feels like a massive waste to give up on what I’ve worked hard to produce so far.

– I have a strong need for closure and it makes me feel super uneasy knowing I have so many unfinished pages, ideas, sub-projects, and loose ends etc etc floating about. I realise this is not a good enough reason to go back though. I want to be able to be happy with things being abandoned, left unfinished or put on hold if it turns out that is what’s best.

– I really hate breaking intentions and promises, including to myself. I believed I would be doing this for years to come, if not forever (I never seem to learn from past experiences in this regard). This makes me feel I can never completely trust what I feel, say or commit to. Because I was so sure. Sure that this was it for life, that it would never change, let alone die so fast and seemingly completely. I’d basically found my life purpose or passion – that thing which self help gurus and career coaches keep harping on about, and which truthfully a lot of people never manage to find. I found it for sure, for a time at least. And that’s a privilege. So I have resistance to losing that, or to admitting I have.

– What would be the alternative if I do walk away? I’d have major guilt about not doing a work-like thing for a start. So I may well have voids to address in terms of self-esteem, purpose and simply filling time. 

My relationship to my autistic self and identity. This one is a little tricky for me to unpick at the moment. But I’ve definitely been feeling a loss of novelty, excitement, and even pride about the fact I’m autistic. Perhaps i’m even undergoing something of a backlash? Although backlash seems a little extreme. I suspect it’s something more of a rebalancing act involving being less fixated on the autism aspect and on filtering every single through the lens of autism (not that there’s anything wrong or unnatural about this whatsoever). I’m guessing this is perfectly normal a few years on from a diagnosis. But now I’m thinking I might have swung too far the other way? That I’m ‘forgetting’ what being autistic means for me (or sometimes even that I am autistic). I don’t like this because the reality is that I am different, I’m supposed to be different, and that’s fine and in many respects a very valuable thing as well. Knowing these things about myself and remembering explanations for stuff has probably been the most helpful thing ever, so I don’t want to lose that. And actively learning and engaging with autism stuff is a huge help with this. In many respects (though not all), doing work around autism has been really good for my mental health and self-esteem, and not just because I’m engaged in a meaningful project. It’s because of the actual content of what I’m learning, content which really helps me personally, in terms of self-understanding and seeing how I fit in with others who are similar to me or not so similar to me.

I love the autistic community! Even if the SpIn feels towards learning about autism itself have dwindled, I want to keep being an active part of this community, learning from it and finding connections within it (and in fact far, far more so). I in no way need to be attempting to keep up with all things autism or to be doing advocacy to make this possible, but i’m guessing it wouldn’t hurt (;

– I feel a sense of social obligation to do this work. Not so much on a personal level in terms of upholding specific ties or commitments. But more in an abstract sense of I really believe in this cause, that working towards bettering autistic rights and realities is important, worthwhile and quite under-addressed in the wider scheme. It is something which is greatly needed right now. There aren’t enough people working towards this.  But at the same time, there are a lot of people working towards this, and it is growing and gaining ground all the time, so there is much to get involved with. Rightly or wrongly, not being part of this gives me a lot of FOMO. Maybe this fomo is dumb, or maybe it’s trying to tell me something important about what I want to be doing. I realise there is really no need to feel any obligation. The sense of obligation is entirely imaginary. No-one expects anything. And even if they did, it’s ultimately up to me what I choose to engage in.

All that was maybe a little depressing… But there is still hope! Because there’s an additional reason I’m resistant to letting go:

I am actually far from certain that my autism special interest has in fact truly died.

I’m not entirely sure I believe this belief of mine which is telling me I cannot go back (even if that going back might need to look quite different from before – more on this in the next post). I’ve never successfully sustained a SpIn work/passion project for more than 3 years, despite always wishing I could. But right now, I’m feeling that I want to give it a try, that I at least owe myself this. Even just for the curiosity… to see what might happen, to see if I’m still capable. Even if it is just to end up proving myself right, that this resurrection malarky simply does not work (whether that’s just for me, or whether it might point to a more general autistic thing as well).

So I’m starting to suspect that this isn’t as clean a cut as my brain is perhaps tricking me into believing. I do feel super conflicted about it, split in multiple different directions, after all. I think it might help to try to dissect what I have lost vs. what I might still retain. There are many dimensions to this SpIn. I’ve definitely lost some, but perhaps not all:

I’ve lost (if not fully, at least in large part):

– Those chemical excitement feels that seem very particular to autistic special interests

– Intellectual curiosity, motivation and stamina

(and honestly, losing these two are big bads because they’re clearly quite integral)

I’ve not lost:

 – Love for autistic community

 – An intellectual sense of the importance of this cause/movement and imagining myself as part of it (i.e. that I ‘should’ be part of it, ‘it makes good logical sense for me to pursue this’, even though I might not necessarily have a strong emotional want or ability)

What is a bit more ambiguous:

My feelings about the importance of this cause/movement and wanting to be a part of it. With this one, I do still get feels, but they’ve faded and also become a bit bad in some ways (as I explained earlier)

In sum, I do still care. On an intellectual level, also on an emotional/empathic level. But there is something big missing in terms of personal chemical, emotional and cognitive goings-on. That intangible thing that seems beyond all control. There’s also been a definite loss of ability in terms of capacity to read and think and write and engage in this issue – whether that’s simply a symptom of motivation loss or something entirely separate and perhaps more pervasive is hard to say (perhaps the latter bc any intellectual work is kinda hard).

On the other side of things, I’m obviously resistant to go back for a reason/multiple reasons, and many of them are probably quite legitimate.

Reasons to let go?

– Thinking about going back makes me feel some combination of panicky, overwhelmed and trapped (though there are a couple positive emotions in the mix somewhere too, like curiosity and excitement perhaps). As previously stated, the thought of not going back tastes a lot like freedom, honestly. And of openness, possibility and unrestraint… Which probably isn’t the greatest sign? I need to consider what is making me  feel ‘un-free’ about this autism stuff.  Is it something I can change about the way I engage with it? Or is there a much more fundamental issue, potentially preventing me from engaging at all?

– I really need and want to focus on other things. So going back or not is also a question of being able/not able to do these others things – which might be a variation of things, or one thing in particular (like a new SpIn… which I’m currently doing a great/not so great? job at batting away… because as someone who is basically unable to have more than one SpIn at a time, that surely would signal defeat)

– I struggle with being too all-or-nothing, so may become re-obsessed to the point of other important things falling away. (The length of this post alone is a massive case in point). I often find it super hard to get started with things, but once I do and I find I like it, it can be extremely hard to stop, like opening the floodgates.

So actually, in large part, it’s a fear about not being able to control the interest, of it overtaking everything, that is contributing to the not being able to do it in the first place. And if the not doing entails a loss of interest, then this fear is essentially contributing to a (rather ironic?) dying process perhaps. 

So it’s all a bit split and conflicted. I may or may not decide to continue with autism content. If not, I may or may not continue with whatever other sort of content that might appeal to me. Most likely, I think, it won’t be so black-or-white, and rather some in-between place, and a question of degree. I fear I’ve been looking at all this too black and white. Because clearly this loss is not a clean one. It is but a hazy grey zone. Ode to that grey zone (thanks BANKS!). Perhaps I should attempt to live in that grey a bit, muddle through it, see what path I can carve through. Middling and muddling through various identities and their intersections. It’s the balance thing again, of course, and the difficulty of navigating through that.

I’m considering doing a little experiment! Rather than hypothesising about what is essentially an imaginary ‘what if’ scenario, it may well prove easier simply to take action and then just see what happens. I think the feeling might be in the doing? That it takes doing something to find out if you (still) like it. It could be that it is the act of engagement that cultivates passion and motivation, and that stopping the engaging is really what has produced, or at least exacerbated my situation. Taking action may give me clearer knowledge about my cognitive capacity to do this work and my feelings about doing it.

Also, and quite importantly, I’m not sure I have a huge amount to lose from trying? As I’ve already alluded, a ‘reasons to not go back’ list might include:

– Further time and energy that could be spent in other ways (fun things, social things, letting myself explore a new burgeoning SpIn)

– Because of all-or-nothing tendency I fear ‘doing some’ will slip into ‘doing nothing but’. I worry about getting re-obsessed. Especially now I realise I need and want to have a more balanced life and avoid the risk of burning myself out again.

– Making promises to myself to do stuff which I might then not be able to fulfil is disappointing. I could feel worse if I try and then end up failing anyways.

I think I can live with these things (except the ‘getting too obsessed again’ thing – but see my next post for more on this). Whereas I suspect I’d probably regret if I chose to walk away at this point. So I’m going to try to go back! To test how I feel and see what I can do. I will be back very shortly, and this time with a plan of action :D.

 

Autventures in Central Asia: Reflections on Autistic Travel and Mental Health

I am excited to write this blog post (though warning, it is long and becomes rambly in places)! It’s been precisely 3 weeks since I last sat down at my computer and with plenty of time and space and calm to do some reflecting. It’s also nice to return to doing the sort of activity I feel I thrive most in – hyper-focusing on some writing project I find meaningful, and thereby getting to use very different parts of my brain than I’ve been used to engaging when I was away. To my surprise, I also find that I actually have the spoons to be writing now, on the very morning after arriving back from Dubai late last night!?

Before I left for this trip I was experiencing feelings of depression and low energy (although nowhere near as intense as a couple of months prior). I’d definitely been doing a lot better, even if most of the underlying issues were still there and causing me quite a bit of worry under the surface. So how do I feel now? How has being away from home, autventuring through foreign lands, leading a quite radically different lifestyle for 3 weeks impacted my mental state? This post will explore some of the potential mental health impacts of travel from an autistic perspective, focusing mainly on the sensory and social stressors that we may experience moment-to-moment, as well as the deeper reflections and realisations that such a big change in environment and routine may provoke (update: also, having now actually written the post, I diverge into a lot of other random stuff too). Whilst I may make some general extrapolations, everything here is based on my own experience, and of this one particular trip at this specific moment in my life. 

Why did I go to Central Asia?

I have a confession to make. The reason I went to Central Asia is not because I wanted to go to Central Asia. It’s not that I didn’t want to go to Central Asia. I have nothing against it. It’s a perfectly wonderful part of the world, in fact. I just didn’t have that burning desire (or, if I’m being entirely honest, any desire) to go there. The reason I went to Central Asia (aside from the practical one that my Dad was going and I had the opportunity to go with him) is that I wanted to see how I would feel. And not how I would feel in relation to Central Asia either. But how I would feel within and about myself and my own life. (Selfish I know!)

This motivation is very much reflected in the travel journal that I kept. It’s not hugely long, but unlike what I imagine most travel journals look like, it contains extremely little about what I saw or did or even what I thought and felt in relation to those things. This makes me feel like a bad traveller, not to be interested in the places and people I’d journeyed so far to visit. Not to be in the teeniest bit interested to learn anything about the place, its history (big yawn, I’m sorry), the culture, the art, nor even the geography and landscapes (which at a previous time in my life would have greatly interested me). To feel that hearing any of this information constituted a massive and unwanted drain on my mental resources. To experience a feeling of relief at not being part of one of the many tour groups I saw, being subjected to a seemingly endless barrage of facts pouring out from over-animated tour guide mouths. 

I’m not sure why this was exactly? Whether it stemmed from a depression-related general lack of interest in things, or perhaps from an autistic either hugely-interested or not-at-all-interested dichotomy (with the majority of things falling into the latter category because such high intensity is not easily sustained beyond a small area).

To clarify, though, I should say that I was very interested in having the experience of being in Central Asia (or really anywhere that was not home or home-like). I think this relates to a desire to experience the (positive) sensory aspects of being in a place, whilst being less interested in knowing much about the place itself (which relates to learning all the meanings associated with it). (On reflection, perhaps this is quite autistic of me, because often sensing > interpretation?) Really, though, I just wanted the experience of travel, of having a break from normal life, of being somewhere different for an extended period, and it could have been anywhere really. Which I suppose is fine. I think you can still appreciate the experience of being somewhere without knowing or even caring much about what that somewhere is all about. (Though most would probably argue that knowing stuff or wanting to learn serves to enhance the experience, and in most cases I’d probably agree).

Central Asia is pretty foreign to me. And surely the more foreign the place, the more novel the stimulation, the more distraction, the higher the processing demands, the greater the potential challenges and discomforts. As a result of these two factors (writing mainly from a mental health perspective + being subject to a lot of stressors), my travel journal ended up being little more than a catalogue of complaints. Although plenty of great times were had, I undoubtedly find it easier to write about the niggles. Not that I don’t notice all the good. I just feel there is little need to write about it because there is no stress that needs to be released in relation to it, and writing, it seems, is primarily a way for me to release stress. In addition, I am quite bad at the sort of creative, flowery writing that might be needed to conjure up evocative descriptions of the beauty or interest of places. I don’t know what to say other than ‘that was amazing’ or ‘this thing is so beautiful’, which quickly gets boring to read (and write).

I could feel guilty about this. But writing about whatever was stressing me usually made me feel at least 50% better, so overall I feel it was a great coping strategy. Also, at this point in my life, now travelling with the knowledge that I am autistic, I feel all this ‘complaining’ can be put in its proper context, and seems more understandable  and justifiable in a way (not that there needs to be any justification to feel a certain way or anything, but it can certainly help).

Autistic travel stress

Autistic travel stress is not so different from autistic life stress really, except arguably more intense. Because travel is just life after all, but often with the intensity (in most respects at least) dialled up a few notches. Many of the things that may stress an autistic person in day-to-day life remain issues or become even more of an issue in the travelling life (although we may be leaving behind potential stressors such as work, certain people, other responsibilities, etc which may certainly be relieving).

So none of the sorts of stressors I’ve listed below are necessarily specific to the travel experience, although travel does usually mean there are more of these things, at higher levels of intensity and clustered closer together in time (eek!). Generally, I’d assume these issues are likely to be similar regardless of where you are in the world. No matter where I travel, I repeatedly find myself surprised by just how ‘the same’ most places are in relation to one another, in that despite the undeniably stark environmental and cultural differences between different countries and regions, the basics of life remain pretty similar wherever you go (especially in terms of the social side of life I find). So it makes sense for nuisances to be of a similar genre at home and away or between destination x and destination y.

I’ve already written in a more general sense about potential stressors in an earlier blog post on autistic travel anxietyHere, I want to talk about stressors with a greater level of specificity, which means I’m basically going to go ahead and list out everything that aggravated me about this trip (finally hehe)! At multiple points whilst I was away I felt the compulsion to start writing down the numerous bothers that had been stressing me that day. I don’t know why, whether out of frustration, as some way to relieve the stress, or to try make it more clear and justifiable to myself why I was feeling fed up.

I never wrote a list out at the time (it often felt like too much effort to get out pen and journal). I’ve tried, though, to compile an amalgamation of specific sources of stress in hindsight. Most of the things are sensory stuff (noise, especially). In fact, I think there was rarely a moment in which there wasn’t some sort of sensory disturbance, even within the relative calm of hotel rooms. It won’t necessarily be the case for every autistic person, but I think the list demonstrates the importance of the sensory environment (or at least in my own life). I hope the below isn’t to off-putting to anyone who is considering/preparing for a future trip, but I think it’s important to be open about how stuff can make us feel.

– Traffic, traffic, traffic, times thousands of instances of arrrrghh!! 😥

– Chattering voices. The single biggest nuisance after traffic, perhaps even worse than traffic? And not just chattering, but lots of the voices sounded so loud, or harsh in tone to me, aggressive even, like arguing (mainly the men I noticed). I hope this isn’t culturally insensitive (like how I felt annoyed at people ‘shouting’ to each other in the street a lot). Often I felt guilty and bad for just wishing people would zip it for a bit. But it really hurt my brain. And it boggled my mind sometimes just how much people can talk and talk and talk and seemingly not get tired of it?

– Why is every single seat so uncomfortable in some very particular way? (Solution: carry a travel cushion everywhere you go.)

– The mattresses in Uzbekistan are hard as rocks, the pillows are so fat and un-squishy as to be better off on the floor. Resultant back, shoulder and neck aches.

– Air-con in hotel room (in Dubai) is hella noisy.

– Eyes, eyes everywhere (although I desensitised to this quite a bit with time, and also Central Asia is very hassle-free and people generally do not stare or even look much).

– Gah small talk. I do dislike it. Especially when it becomes repetitive which is the case when you are meeting a lot of new people but only for short amounts of time (the same old questions keep re-surfacing again and again). And I feel bad for hating it. And for not really wanting to talk to most people. Because it’s so anti what ‘good’ travel is supposed to be about in most people’s minds. But, to me, it just feels pointless when I’m never going to see these people again (i.e. there is no payoff in terms of continued connection to compensate for the amount of anxiety and effort involved in initiating a convo or investing in one for only a short time). There were a few times when I did actually want to talk to some people, but interacting is hard. This (the frequency and apparent ease and pleasure in how people, especially with strangers or new acquaintances, interact with one another) is like the number 1 thing that makes me feel different to others and which still baffles me (even though I now understand the reasons for it).

– Extremely loud noise from a generator (in remote yurt stay in Kyrgyzstan), otherwise ruining an entirely peaceful environment.

– Constant un-packing and re-packing of bags every 1-3 days.

– What felt like a never-ending need to take off my backpack to retrieve/put back various items. Sometimes I just wouldn’t and so wouldn’t drink when I needed to, or take off a layer, or apply suncream or get camera for a photo. 

– Unbearable heat+humidity (in Dubai) (though after a bit we did acclimatise / learn the best outside place to be was in the pool and nowhere else).

– Some anxiety about losing/damaging valuables.

– Hunger – at wrong times, not being able to tell if I was hungry, hungry but also sick, hunger vs. stress of restaurant, lack of control or choice over food.

– Not getting/appreciating certain social rules (like around compulsory meals/socialising) and probably appearing rude for not abiding or declining.

– Cigarette smoke gahhhh

– Overwhelming petroleum smells (exhaust laws are less of a thing).

– Screaming babies on long-haul flights (high-pitched sounds penetrate earplugs and noise-cancelling headphones rather well). It’s simply the worst. sound. ever. Obviously everyone finds this irritating, but I was close to losing my mind a few hours in.

– Sleep deprivation and physical/mental tiredness from things like early morning flights, jet lag, failing to sleep, etc. Also just being tired for no apparent reason. (Often I found the tiredness really hit me on ‘easier’ days, perhaps because some of the adrenalin wears off. Stopping can make it feel worse sometimes).

– Achey joints from hiking.

– Feeling trapped in certain circumstances, like on flights or in restaurants, (though usually there is always some option for escape!)

– Getting a stomach bug, needing to puke, but not being able to (gross, sorry)

– Altitude sickness during a night at 3,000+ metres

– Painful dry, cracked and bleeding lips for the first few days

– A fair amount of motion sickness (mainly on flights)

– Communal meals and compulsory socialising, eek

– Completely running out of energy for talking a couple times

– Initial anxiety of stepping into a new hotel or restaurant and having to start interacting/make decisions straight away

– A vaguely uncomfy feeling of having too much unprocessed stuff in my mind, of not remembering things I’d seen or done, of feeling a bit detached and things feeling slight unreal? (This lessened with time though as I just went more with the flow of things.)

– Tour groups in Uzbekistan (so loud and so sprawling and so everywhere). I know I shouldn’t complain because I was being a tourist just like them, but all the chatter and movements in close proximity can be a distraction from appreciating the beauty of a sights I still can appreciate of course, but my attention flits around a lot, most often being drawn to all the people around me (probably because they are more stimulating than a wall of tiles – however pretty those are!). These super touristy sights in Uzbekistan triggered the most intense tiredness of the trip (and were a bit of a shock after all the nature and relative emptiness of Kyrgyzstan). I had to take a couple of ‘naps’ lying down in very public very random places to temporarily recover energy.

And… here is a brief list of things that helped 🙂

journaling, music, not knowing what the itinerary was more than a day or two ahead (to prevent overwhelm), allowing myself to ‘be autistic’ in whatever way (protecting myself from sensory things, not involving myself in conversations, stimming, not looking at people, having autistic badges on display, doing echolalia (namely of nice-sounding place names – ‘Tashkent’ dammit!), paying special attention to the beauty or curiosity of things, taking photos, talking to my to travel companion, and reminding myself that the time for sleep is never that far away!

 

Is autistic travel worth it?

A big question I kept coming back to throughout the trip was: Is this worth it? Is travelling, more generally, worth it for me? I have a conflicted, even somewhat of a love/hate relationship with travel. Because of all the stress involved it causes a lot of anticipatory anxiety (especially for solo trips). It, of course, involves a hell of a lot of discomforts during the fact. It also takes a lot of resources, namely money, time and executive function to research, plan and actually carry out the trip. 

Does this mean that autistic travel is just a bad idea, a recipe for what would otherwise be entirely avoidable heightened stress and anxiety? Well, no. Obviously not. I mean, to be sure, travel isn’t for every autistic person. It’s a very personal thing, just as it is for non-autistics. But generally speaking, travel is living life in quite an intense way (if by intensity we are measuring things like degree of sensory exposure, social contact and change in environment). Intense can sometimes mean bad, sometimes mean good and sometimes (probably most often actually) mean a mix of both good and bad within any one experience.

It’s often said that whilst travelling the lows tend to be lower, whilst the highs are higher, i.e. there is more stress than in normal daily life, but also there is a lot more excitement to compensate for this and make it maybe, probably, all in all, worth it? I would venture to say that the stress and lows are likely to be more profound for autistic travellers (as in life in general). But also, more controversially, that the highs may also be higher? Or if not higher per se, then perhaps the highs are distributed differently, so that we might take delight and joy in things that non-autistics do not to the same extent, or even at all (also as in life in general).

Examples of this for me might include appreciating the beauty of nature at what I feel is an above normal level of intensity. I really really enjoy zoning out on a long train or car journey, it makes possible some of my best thinking and just feels so damn nice :p And more generally I very easily savour pockets of rest and alone time, whereas others might be liable to boredom during the moments. Conversely, the very things that might rejuvenate many a non-autistic, and even the very things that are considered the ‘best’ parts of travel, could be precisely those things that most drain or worry us as autistics (e.g. socialising in a new group of people you’ve just met).

Regardless of the specifics, certainly the highs are still there in autistic travel. They provide the lure and tickle the itchy feet. They fuel the motivation to face the difficult side of travel. Here are some of my trip highlights, the things that made the stress worth it, the reasons I’m glad I got on those flights (all seven of them to be precise), and the reasons why I’m (probably…hopefully…) going to keep travelling in future:

– Revelling in the quietest, emptiest and surely most remote place I’ve ever been. I’ve never heard such silence! Remembering how calming big horizons and wide open people-free, building-free spaces are for the mind.

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Sunset at Lake Song Kol, Kyrgyzstan

– The beauty and diversity of the natural landscapes in Kyrgyzstan generally, from mountains, glaciers and rivers, to high altitude plains, lakes, canyons and beaches. All so unspoilt and devoid of development or even many tourists.

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High peaks of the Tien Shan mountains, Kyrgyzstan

– Visiting mosque after monumental mosque along the old Silk Road through Uzbekistan.

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The intricacy, symmetry and overall splendour of the Registan in Samarkand, one of the greatest sights of the Islamic world

– Some of the food (with emphasis on the ‘some’ :p). Central Asia is very far from being a foodie destination, but we still managed to track down some nice places to eat.

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From the low of being served a single unseasoned boiled potato as main course, to an embarrassment of riches at various breakfast buffets (breakfast is serious business in this part of world, never to be underestimated :p)

– I generally loved being in moving vehicles. But the circumstances need to be right: high speed, constant speed, comfy seat. Made even better by: loud music, nice views out the window, window open with breeze on face, long journey to provide enough time to zone out. Not: stop/start traffic, the need to make small talk with anyone, conditions that make me motion sick. In contrast to the high/constant speed, I also learned that I absolutely love travelling on super rough roads where the vehicle is bumping and swerving around all over the place (because of the strong proprioceptive input I think). We had a lot of this in Kyrgyzstan and it was super. (Check out my YouTube vlog for a bit too much video footage of this)

– People watching. Especially from the side-lines where I can’t easily be watched in return! Because eye contact or even sense of being looked at can be uncomfortable.

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Here are some of the local goings-on during an international dance festival in Kiva, Uzbekistan

– Dubai – the skyscrapers, experiencing such a radically different (though admittedly highly intolerable) climate, the luxury hotels and pools (even if it did feel super over the top, almost embarrassingly so). Honestly though, I love a good metropolis almost as much as a wild place. 

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End of trip treat! Also I discovered infinity pools are stimmy as hell

I do want to finish this section by saying that post-trip aftermath can often bring the danger of rose-tinted glasses. In fact, I think the more time goes on, the more there seems to be a tendency to downplay or forget the stress that was involved and to romanticise the experience as a whole. This is related to the fact that post-travel, back in the comfort of home (and also during the last few days of a trip), I’ve found anxiety tends to be at an all-time low. I want to be wary of this and I’ll say more on this in the next two sections, through discussing how I felt coming home and on some stuff I’ve perhaps learned from being away.

 

Did this experience change me?

Sensory desensitisation

In terms of light sensitivity I noticed no discernible difference (perhaps unsurprising given that I rarely took off my sunglasses whilst outside). For noise sensitivity, I definitely noticed a difference. As an example, going through airports on the way out, I wore noise-cancelling headphones pretty much the entire time. And on the way back? I wore them hardly at all (except when I wanted to watch/listen to stuff) and it didn’t even cross my mind to put them on. So what happened? Well, basically, it was some type of noisy pretty much the entire time. It was impractical and in its own way energy-sapping to wear my headphones the whole time I was out. So I naturally did this less and less, starting with the quieter areas and telling myself I could put them on when I was near busy roads or crowds (though often I forgot or didn’t feel bothered to do this either). Towards the end of the trip, I then started noticing that I was noticing noises less (though this doesn’t necessarily mean I wasn’t being affected at a more subconscious level of course). Having said this, often my sensitivity would fluctuate and I’d get sudden surges of anger at things as they flooded my attention after the exposure became too much. Also, wearing headphones – especially with music – did make a big difference in terms of feeling calm and enjoying the experience more. So it’s very much a question of balance. Of trying to avoid developing a dependence, whilst realising the positive difference such sensory protection strategies can have.

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Sunglasses, headphones and a rather stylish electric purple gown with hood (the latter was not part of my sensory kit but courtesy of the mosque I was visiting ;))

Anxiety

At the beginning of the trip my social anxiety was high, as per usual. But then it inevitably lessens with time and exposure. Also, being tired (which I was a lot) tends to decrease social anxiety for me, probably because I zone out more from people, lose energy to pay attention, so I don’t see the cues and this reduces the input, the need for conscious processing and thus the anxiety. I also feel better able to manage my peopleing anxieties now than in the past, even if this is just through allowing myself to avoid and do less (though often this was only a product of having an understanding travel companion who took care of most things – solo travel doesn’t afford such luxury!). I was also generally a lot more chill than in the past in terms of worrying how others might perceive me, not comparing myself to what might be expected, and just letting myself be however felt best to me (knowing I am autistic helps a lot with this).

In terms of more generalised anxiety… honesty I feel it is more of an issue at home! Or at least when it comes to a certain type of anxiety. Because I have barely any spare brain space whilst travelling to think about much other than what is happening/is about to happen in the very short-term, most my mental energy is focused there. And whilst this can sometimes be stressful, it’s also not that bad because it is mostly manageable, it is over relatively fast, and it is mixed in with lots of good. Basically, it’s short-term sensory or people-related anxiety, whilst the more longer-term/existential worries are pushed to the back of my mind (and can even come to seem quite trivial and blown out of proportion if I did think about them). But at home, there is a lot more time and space to think. Perhaps even too much? Perhaps my issue is that I think too much. I guess this isn’t a problem per se, unless it is mainly anxiety and depression-filled thinking, then it is a problem. But, anyway, it seems travel might provide a perhaps healthy break from ‘too much’ thinking, replacing it with high levels of distraction in the form of doing lots of stuff in the ‘real world’ which essentially forces you to be in the present moment.

Depression

This is a biggie for me because it’s something that’s been affecting me a lot in recent months and something I really wanted to improve. It’s been a bit up and down, but overall the impact from going way was pretty darn positive 🙂 To be sure, there were times I noted in my journal that I felt depressed (even though they are hard to recall in my mind now, probably due to issues with emotional permanence). Stuff like ‘what is the point (in this trip, or in anything else)?’, ‘this is utterly ridiculous, what am I putting myself through?’, ‘I just need to lie down and for the world to stop’. Or failing to feel much excitement about things that should be exciting. Or feeling happy in the moment but then remembering it won’t last. And then feeling a bit guilty about all of this.

They were only mild feelings though and they didn’t pop up for more than a few hours here and there. They were most there at the beginning of the trip and also surfaced super randomly for a couple days somewhere in the middle. It’s hard to pinpoint the reasons why. They seemed to come to the fore when I was alone and left with time to think (though not always – often I felt very at peace when I was enjoying alone time). And also when we stayed put for a few nights and had a couple slower days which perhaps reduced the anxiety and adrenaline, increased rumination and potentially gave space for depression to surface.

Returning to the issue of rose-tinted glasses, I’m actually surprised now, reading back on my journal, to see how much I mentioned feeling depressed, because that is honestly not my recollection of things now. Perhaps I was just journalling when I felt more negative, and not the many times I felt fine. I do remember finding it hard to pinpoint how I felt even at the time though, let alone in hindsight. A couple of times I described feeling a sort of happy-sad. Yet at other times during the trip I was thinking ‘wow, this is amazing, I feel so alive and free, and this is so beautiful and yah dee dah’. It’s hard to remember which one took place more. Either way, it’s clear that I could think very differently about my experience, including within a very short space of time.

Back home though, and in the latter part of the trip, it became clearer to me that the impact had been positive. In Dubai, especially, I felt so calm and confident and at peace and noted that my depression is ‘like a thousand time better, and has basically been a non-issue the entire trip’ (a slight exaggeration perhaps, but it’s how I felt at the time). I don’t know if this tells me my depression is indicative of a ‘life’ problem as opposed to a ‘brain’ problem (a simplistic dichotomy perhaps, but see this video (around 9 minutes in) for an interesting discussion on this in the context of travel). In other words, something that might only require a change in context or lifestyle, as opposed to something that follows you around almost no matter where you go or what you do and which may require a lot of work to constantly manage. I’m sort of hoping it’s the former, because that seems like it might be easier to change. This experience suggests it may have a lot to do with environment and what I’m doing on a daily basis, so that’s promising.

I am in no way trying to claim that travel helps (let alone ‘cures’) depression. I’m not even claiming it has for me. Clearly, the impact is hugely personal, dependent on the type of trip, the timing, the type of issues someone is facing in life, and so much more. It’s undoubtable that travel has the potential to impact negatively on mental health, certainly in terms of anxiety, but also for depression (especially if there are feelings of homesickness, loneliness, a sense of lacking purpose whilst away, whilst disrupted sleep, diet and general self-care routines may not help either).

But putting all this variability and ambiguity aside, how might travel conceivably help contribute to an improved mood, and even a renewed sense of purpose? These are some factors which I think had an impact for me:

High activity levels which provide almost constant distraction and lack of time or space to think about stuff, especially long-term worries. The mind is essentially preoccupied with the here-and-now and the need to process high levels of stimulation, much of which is exciting or at least novel. (Though conceivably living this way, especially for too long, could also backfire if certain thoughts/feelings accumulate and are left unprocessed.)

Seeing nice things. Especially for me, natural beauty. There’s something so intrinsically calming and humbling about seeing untouched nature on a grand scale. It provides perspective on your own life, and on human life in general. The same with architectural beauty. Or even stuff that is just novel or interesting, whether beautiful or not. Having seen things of beauty or interest can easily make an entire day feel worthwhile for me. Discovering and experiencing pleasing aesthetics and nice sensory things just feels so good and can even provide something of a sense of purpose.

Being around people a lot. This was in two ways. First, just seeing hundreds of people going about their lives each day (this provided not only distraction and interest, but also perspective – see below). Second, being in company almost 24/7 (though generally I didn’t like having to interact with strangers, only my travel companion :p) – this one provided distraction, a sense of fun and combatted feelings of loneliness.

Spending hardly any time online, specifically social media. I’m pretty sure this was important, because the few times I did go online, I felt anxious in the run up, overwhelmed by too much info and choice, and then sort of down after the fact. Having internet access makes it feel like there is always something you could or should be doing or checking up on, and this is not always such a relaxing state to be in. I appreciated times of having no WiFi or of simply deciding that I wasn’t going to connect (because let’s be honest internet is pretty much everywhere these days).

PerspectiveIt’s cliched as hell, but travel really does broaden your horizons. It shifts focus away from yourself. Honestly, for me, it made a lot of my usual worrying seem a bit trivial and unnecessary. It made me think I spend too much time inside my own head, worrying about things that don’t really matter much in the grand scheme of things. Spending so much time out in the world, seeing so many people, getting insights into their lives, it seemed easier somehow to place things in a broader context, in their proper context. Also cliched, but travelling, especially to developing countries, usually serves to highlight your own privilege as a traveller, and often quite starkly. In particular, I was often struck by seeing the jobs and related lifestyles that so many people are busy doing and repeating over and over again. It strikes me because I know there is no way I could last even a week at most of these jobs and it amazes me how people find the stamina to keep working in these environments day after day. This amazement is related to my privilege as a middle class Westerner, but it is also related to my neurotype which probably makes certain conditions appear/feel more intolerable to me than the average person). 

I’m not sure where I was going with this in terms of depression… I think I’m trying to say that it’s natural to start feeling less self-absorbed when you are seeing so much of life and what other people are getting up to. Less thinking about myself, more thinking about the external world, leads to less worrying about myself and my life I guess? Also, I felt that my thinking became a bit clearer, that decisions about what I should do in life seemed suddenly obvious and straightforward whereas before things felt overcomplicated and clouded. So perhaps less thinking also means ultimately clearer thinking, who knows! Perhaps with less free time in which to indulge your own thoughts, it becomes more obvious to yourself where your thoughts keep returning to most, which shines a light on what is bothering you or what means a lot to you. And at the same time it seems to become easier to place these things in a wider context, and to perhaps worry about them less. 

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Perspective, because there’s a long road ahead (and lots of stuff either side too)

 

Returning home: What have I learnt?

During the last few days of my trip I was feeling decidedly ambivalent about returning home. I didn’t know whether I wanted to or not. I think I was feeling a bit apprehensive about it. I felt so much better depression (and even anxiety) wise. So naturally I was worried about returning to not feeling so great again when the changes of travel reversed themselves and I returned to my normal environment and routine. On the other hand, it sure felt like a very relieving prospect to be free from so many daily discomforts! Despite all the positives and excitements, I remember telling myself how I felt there wouldn’t have been much chance of me sustaining this lifestyle for much longer (I could well be wrong about this though, I simply do not know).

Returning to depression again, perhaps travel can help heal the more day-to-day blues, but what about a more lasting impact? What about returning home? Is travelling simply serving to temporarily plaster over problems, providing a distraction and escape, perhaps preventing us from doing what we really need to do, that is focusing on ourselves, the people we are close with, and our actual permanent life back home?

Post-travel blues is something that many people experience, and it can obviously be more of an issue for someone with depression. I did notice a dip in my mood returning home, for a few days at least. But it was nothing major, and it does seem to have stabilised already (around a week later). I do feel less at peace now than I did when I was away, especially during the latter part of the trip when I was feeling more comfortable. Returning home, things can just seem so incredibly stale and same-y. Repetitive, lacking in excitement and novel stimulation, boring and grey essentially. But this is entirely normal and to be expected given how stark the transition is, even after a relatively short trip.

I think I was (rather naively) hoping that this trip might provide a massive shock (in a positive sense) and reset to my system, helping me to realise what is really important in life, making me want to see the world, do lots of fun things, stop worrying about the things I’ve been consumed by recently. It has been positive, especially during the fact and shortly after. And it’s made me feel I can do more of this sort of stuff which is good. But ultimately the impact fades, and it’s bound to I think. If I’m back in a different environment, doing different things, it’s unsurprising that my mindset will shift accordingly.

I’ve been thinking a lot about purpose recently, a lack of which (or a sense of lacking) seems to be an important aspect underlying depression. The past few months at home I’d been struggling a bit with wondering what the point of things are. Travel seemed to relieve some of this for me (although, honestly, pre-departure I was already on an upward trajectory). I think it can be easier to feel a sense of purpose whilst travelling, or at least with respect to some aspects of purpose (because I think there are different sorts).

Travel definitely provides lots of opportunity for the sort of purpose that comes from doing a lot of stuff moment-to-moment and from hopefully finding satisfaction in that. Perhaps this could be termed more ‘low-level’ or short-term purpose, that which we experience in the present moment going about our daily lives, whether to achieve gratification or just because there is stuff which needs doing. Whether it involves positive or negative stimuli, this keeps us busy, engages mind and body, and provides distraction. Hopefully, through travelling, we are maximising the positive, so there is more seeing of beautiful things, doing of interesting things, and learning and growing in new, fun ways. As I mentioned above, experiencing beauty and interest in things can provide a powerful sense of satisfaction, and thus purpose through wanting to gain more of that satisfaction. On the other hand, travel can certainly be lacking in the other sorts of purpose. The ‘higher’ sorts of perhaps perhaps, like working towards some meaningful goal (other than ‘I want to visit all these places’), or of building long-lasting connections if we are moving about a lot or travelling alone. 

So I’m not so sure where I was going with this (again!)… But I’m actually going to write more about purpose (in the context of intense interests and other stuff) in another blog post coming soon! Back to what I meant to say…  which I think was about things I might have learned from my time in Central Asia and which I want to try to take on board in life:

The importance (but difficulty) of being out in the world and around people: I think it might help mental health-wise to be around people more. And in both the ways I mentioned above: just being around them, i.e. like strangers in public, and in having people to actually talk to (and who I want to talk to, and in meaningful ways) more throughout the day. Obviously it can be super draining to be having too many conversations the whole day, but I think it would also be nice to spend more time just in others company when talking isn’t necessarily the main focus, like working in the same room or parallel play.

Get offline/off tech in general. This one is also very conflicting to me. Because I love the internet and it is also hugely useful for many things. But also I know that doing more than a certain amount easily becomes bad and even counter-productive for me. So it’s ultimately about paying attention to the quality of online time (so I can get more done in less time) and balancing it much more with irl activity, especially social stuff.

Do more of what travelling is all about but without actually travelling (much). So like micro-adventures, to seek out nice things locally and doing more UK-based trips. Unfortunately I tend to both get easily bored with my local area, whilst it also seems like too much effort to travel an hour or two away to go somewhere new. I really like newness. Sometimes it even pains me to have to visit somewhere more than once (which I’m aware may be more than a little odd as an autistic?). But equally, getting to newness requires effort.

Seeking out nice environments extends to inside spaces as well. In Dubai we stayed in such an aesthetically pleasing hotel that was so modern and minimalist and I loved the decor and materials and the space and the light and the colours and the reflections and it all just made me feel so very very right which was fab. It reminded me how very important these things can be, especially perhaps when you are so sensitive to how the environment is set-up, even architecturally-speaking. It’s a bit tricky right now, but in the future I want to make sure my living space is to my taste, calming and uncluttered and light-filled and unfussy.

Desensitisation is a thing. And for me, especially, in relation to people: The more peopleing I do, the less anxious I am about it. It doesn’t necessarily make me ‘better’ at peopleing (however you might define that, or reject such a measure entirely hehe). I continue to navigate things autistically and that’s fine. I’m simply less worried about doing it. Things feel less raw and harsh because I’ve been getting so much exposure. (Note, this doesn’t affect the social exhaustion aspect though, except possibly besides less energy wasted through anxious anticipation or replaying). In general, the desensitisation, decrease in anxiety and increase in confidence was quite stark between the beginning and the end of the trip. I’m often surprised by how fast I habituate, how fast I forget, how fast things become the new normal.

Capacity – I also surprised myself by how much I did, by how little I opted out of stuff. I suspect I’m probably capable of doing more than I feel or imagine I’m able to. Even after once instance of 3 days with little more than 3 hours sleep I was still somehow functional and keen to go about visiting skyscrapers in downtown Dubai rather than sleeping in my super comfy hotel bed! I’m capable of doing a lot, even if I feel sort of on auto-pilot and half zoned out after a while. But then again, I want to remember that just because you can do something, doesn’t always mean that you should, that it’s worth the stresses involved. There’s nothing heroic about pushing yourself to do more and more and more (however our society can make us feel about this). Still, I have to say I surprised myself by how much energy I seemed to have. If I’d done even one day at home of the amount of activity I did in Central Asia, I would have taken the next day (or two) to recover. Whereas away travelling I repeated this day about 20 times in a row without any recovery days and was relatively fine. Perhaps this is simply because I didn’t really have a choice? Or I did, but knew I’d feel super bad and guilty for missing out on stuff.  Sometimes I so wonder whether there might be something about my home environment or lifestyle that is sapping the energy away from me? Even that low-activity levels can become self-reinforcing, in that they accustom you to a certain level of activity and anything more comes to feel like too much. It does make me question a bit how much is physical reality: I can’t do this (and I certainly don’t want to downplay that this is unequivocally very much the case for many autistic people), versus psychological and perhaps more the product of context or habitation levels: I feel I can’t, I don’t want to (which to be fair is still entirely justifiable!)

Transitioning between ‘in’ and ‘out’ states – between spending time exclusively in your head vs being in the external world of people – is one of the hardest things. The ‘out’ to ‘in’ transition is usually okay and feels very relieving (as long as there is sufficient time to relax and to be properly ‘in’ for a good while). The other way round is tricker. But I’ve come to learn that it’s the transition itself that is often the most jarring thing, more than the actual being ‘out’ itself. Unfortunately, though, the NT world isn’t really geared up for leisurely transitions most of the time. This also ties into a big reason why I think my anxiety is actually lower when I am travelling (and thus ‘out’ a lot). Because in the ‘out’ state you are already out in the world, the transition has already been made, and it’s usually the case that things are less scary when you are actually doing them as opposed to when you anticipated them. It’s the ‘in’ state combined with the knowledge of an upcoming transition to ‘out’ which breeds the most anxiety for me. This is important to remember because then I can remind myself that after doing the transition it’s usually not so bad.

A relationship between too much ‘in’, possible over-reliance on routine and increased anxiety? This is related to the desensitisation thing again: the more you are ‘out’ and doing new or challenging things, the easier it becomes to face such things. My anxiety about just about everything felt at an all-time low at the end of the trip. Then, on the way home, I found an interesting BBC documentary about anxiety (trailer hereon the in-flight entertainment system. It mentioned ‘safety-seeking behaviours’ and how experts think these can serve to reinforce and perpetuate anxiety, in that an over-reliance on routines and rituals is a form of ‘giving into’ the anxiety, and to your brain telling you that there is real danger out there which you need protecting from. It seemed to argue at one point that the fears of anxious people are essentially irrational. I can see the sense in this and that letting go of control and just doing stuff in the face of fear might help. But the other side of the argument looms large too (that the sense of control we might crave is necessary and adaptive in many circumstances), and especially I’d imagine when it comes to autism (e.g. routine is essential for getting things done and remaining calm for many of us). Anyway, whilst watching the documentary and bathing in my end of trip high, I was feeling stronger than my anxiety and like I could happily go and do anything I wanted to. If only these things lasted! Being back home has put an end to most of that feeling. But equally, I’m not sure still being away travelling would keep me feeling that way either. I’m pretty sure it’s something about being on the verge of ending a trip and coming home that creates that feeling of calm and confidence, and relief essentially.

As you can see from the above, there are potential and real conflicts everywhere, as ever. So if I can end with just one word-thought, it is this:

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An illustration which was hanging on the wall of the hotel I stayed at in Dubai – a handy reminder!

I don’t know if it’s part of a tendency towards black-and-white thinking or perhaps monotropism, but balance is something I find hard to achieve. My mind thinks in either/or a lot. Either I will travel everywhere in the world and never stop. Or I will give up on the idea entirely and never leave the country again.

I still haven’t come to a clear conclusion regarding how much I like travel and whether or not I want to do a lot more of it in future. But what about something in-between!? Most things involve both bad and good. They involve conflicts between what we want and what is possible or good for us, and between different sorts of wants and needs. In attempting to resolve these, to work towards the best of both worlds, balance probably holds a large part of the answer.

I know that I want and benefit from the excitements of travel, but equally I don’t think I could sustain the lifestyle for too long (especially for solo trips, the prospect of which still terrify me, which is a whole other issue). My life at home involves too little new stimulation. The travelling life is an over-abundance of stimulation. In my day-to-day life, I don’t see or do enough novel things that make me feel that sense of wonder or satisfaction.  I get that life can’t be a series of constant excitements – and I couldn’t handle that anyway – but I need more balance for sure. In an ideal world, I might teleport to another part of the world, spend a couple of days exploring, then teleport back for a few days of recovery at home, before rinsing and repeating. In reality, the solution probably lies somewhere in learning to pace myself better when I do go travelling, and – hardest of all – trying to bring some of the elements of travel into how I live my life at home.

The sad thing is that anything new eventually becomes not new (and rather faster than is expected, for me at least). What was once new becomes the new normal and the craving for something different begins again. This is the very nature of itchy feet… which I must admit I do have, even though I’m unsure about being able to handle/follow through with this itchiness! It’s a strange place to live sometimes. It can feel like there are two parts to myself which are inherently conflicting – the need/want to stay home vs the need/want to not stay home, and to actually go very far away from home.

Nevertheless, I have just revisited my old bucket list. It is unrealistically long, yet also underspecified as well as badly organised. So I’m updating it with fewer destinations and prioritising better with places I am actually serious about going (see ‘The Travel List’ section of my blog here in a bit if you’re curious!) Also, my sister has just jetted off to Asia for a few months. Next year she’s heading to South America and I’m contemplating joining her for some of it! There may well be more autventures yet to come… 😉

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On a flight departing from the UK at sunset. Yay for window seats!

Finding Autistic friends online and off

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I’m feeling significantly better than last week. Partly because I did some of the ‘feel better’ strategies I listed in the previous post (seeing a friend, and going on a day out away from my usual environment was especially helpful), and partly just because the passage of time is a healing thing. Still, I unfortunately in no way feel like my normal self and am still prone to getting overwhelmed by various physical sensations/emotions and worries. Also my energy and info processing capacity is sluggish – I still can’t really read or write or think about the stuff I would usually. Instead, all I can focus on is how I am feeling emotionally, why I feel this way and what I can do to get out of this funk. I’m not sure if such an intense focus on my problems is a good thing or a bad thing. But I guess I just need to go with whatever it is I feel motivated and relatively happy to be doing.

Despite experiencing quite a lot of emotional pain, there are some positives that have come out of my recent experience. The initial thing that triggered it all was actually a very positive emotion (perhaps even the most positive there is), although inevitably doomed to backfire because of circumstance (and because this emotion can also be a painful and dangerous one). I feel like I’ve already learned quite a bit from what happened and should hopefully be more equipped to deal with anything like this again in future. I also feel this episode has given me a lot of time to think, to write about my feelings, to let out emotions (I actually had a meltdown earlier this week which is a very rare occurrence for me – it was horrible during the fact but ultimately very cathartic and left me feeling calm and relieved in the hours after), and ultimately to find a new perspective and path to head down.

As I mentioned in my previous post, a core issue in how I’m feeling relates to feelings of social isolation, and especially from the autistic community (with which I am really eager to connect). The second part has to do with info and emotional overwhelm in relation to my ‘intense interest’, which is what I want to dedicate my time and energy and essentially my life to. I’m going to address this in a third post. This is post number two in whatever this series is. You can find number one (the emotional breakdown/burnout that triggered it all) here.

First, I have quite a bit of regret about the past, about being undiagnosed until 27, about social stuff, and how I imagine (perhaps naively) that having had the first thing rectified (being diagnosed younger) would have dramatically helped rectify the second thing (having more meaningful peer connections). However, there is literally nothing that can be done to change the past – except for how we choose to look at it – so there is not much point in dwelling on these thoughts. It only makes me feel bad. I am very far from alone in being late diagnosed and feeling regret and other things about it. I don’t want to play the blame game or keep imagining how things could have been different, or comparing myself to others or any of that. At the same time, though, nor do I want to ignore and repress how I’m feeling, because regret (and also things like jealousy) often points us in the direction of the things that we want and that are currently missing from our lives. I don’t want to prolong the pattern of regret, so I need to change the factors that have led to the creation of the regret, all whilst trying not to dwell in the regret. I have a lot to feel happy and grateful for – past, present and future – and need to focus on these things – not least the fact that I was actually able to discover I was autistic, get diagnosed and become part of this community – this doesn’t happen for lots of people (especially all the past generations), or happens for many even later in life.

I don’t necessarily feel equipped to start changing these factors and addressing the sources of my regrets and desires, especially not now. But I am going to try and see where it goes. I often feel stuck, hopeless and anxious about the prospect of trying to find people to connect with. There are a lot of unknowns, a lack of knowledge, control, certainty and limits – especially online. My experience over the past couple of years has not been amazing, and whilst I certainly made some connections both online and off, they ultimately haven’t become lasting ones. Social anxiety, a somewhat depressive mind-set, executive functioning issues, screen fatigue, and limited capacity for sensory and social input is not the most conducive mix. But, I’m hoping it should be do-able. I have to believe I can succeed in finding meaningful connections. Hopefully it is just a matter of making it a priority, of dedicating time and effort, perhaps with a bit of luck thrown in.

So what am I looking for? Well, I want to meet people I can feel meaningfully connected to both online and off. I’ve also decided I’m going to focus on the autistic community in order to do this. It’s not like I’m averse to attempting to befriend non autistic people or anything :p (and actually I am thinking about pursuing a couple of avenues along these lines as well). But there are a few good reasons why I want to focus on the autistic community. For example, I feel I need some sense of focus and limitation otherwise the amount of possibilities seem endless and utterly overwhelming. The main reason, though, is that I really like talking about autism and ultimately want to connect with others who are also passionate and interested in this and in trying to change things for autistic people for the better. And it’s simply more likely that autistic people are going to be knowledgeable and interested in talking about and doing things around autism than your average allistic person is going to be. I also feel slightly sad about only discovering the autistic community in my late 20s and so have understandable feelings of wanting to compensate for this lost time through focusing my energy on it now.

Honestly, trying to find people online is quite an overwhelming prospect, perhaps even more so than irl. I think this is because online is pretty much limitless and it is so easy to get distracted from what was your initial purpose or route. I can just see myself endlessly reading or commenting in Autistic Twitter conversations – which is all fine and good to an extent – but I don’t actually know the people (properly or at all) I am communicating with. I don’t know who they are as a person, they don’t me. I don’t know how likely it is that I might manage to find people online who I can genuinely know and care about and feel for, and vice-a-versa. Of course, it happens. And quite a lot (a good proportion of relationships start via online dating these days). But most of the time this happens when people meet online and are then able to take their connection offline. Not being able to do this regularly or at all poses a degree of blockage. Sure, I can probably make causal connections where we message every now and then, or interactions where we know of each other and like, comment, share. But there’s a definite limit to how much this fulfils the need for real meaningful connection we all have as humans. Still, I am going to pursue this avenue through whatever means it might take (Facebook, Twitter, YouTube, online dating, discord, email, and probably more!) because it is worth taking the chance and, at the very least, I should end up with casual friends I can message with even if we can’t know each other more deeply or in real life.

The dilemma is that I feel easily and simultaneously overwhelmed and unfulfilled by random/casual social media interactions (whilst I acknowledge that the whole thing can be quite addictive and provide short-term gratification at least). I don’t (want to) care about followers, or validation or feedback from people I don’t really know when what I’m lacking is deeper connection. At the same time, social media is a potentially great way for finding these more personal connections. And the autistic community is relatively small and widely dispersed, and various physical spaces are not always accessible to many of us, which makes online very necessary. So that’s the dilemma. I need the thing which is overwhelming me, and that is very often prone to throwing me off task. Perhaps it’s about the style of engagement you choose – wide and shallow vs. limited and deep? And obviously these are two poles and there is a lot of grey area that people fluctuate through as well.

To find those deep connections I think requires being quite selective. Not being selective enough up to now has contributed to me feeling overwhelmed and unfulfilled, because I’ve ended up spending a fair amount of time communicating with people I don’t really know or might not actually have a huge amount in common with. I think, for me, online connections are best with people I already know irl (which is not many) and then hopefully with a small handful of people that I can find online and get to know really well. Of course, it is going to require quite a bit of shallow and wide wading to work my way up/down(?) to finding that deepness, but hopefully with time I will find myself spending less time wading and more time deep diving.

So what sort of people do I think I could connect well with? Here are some core things I’m looking for (in case you were wondering!). People who are:

  • Autistic
  • Roughly between 25-35 of age
  • Into autism and autistic/disability rights, perhaps blogging or doing advocacy or just someone who likes talking about this stuff
  • I’m also especially interested in connecting with other autistic women and also those in the LGBTQ+ community (though these aren’t ‘must haves’ or anything)
  • I’m interested in a relationship, so people who are single and also looking for a partner would be another plus. (But I’m also looking for just friends too, so again not a requirement.)

As for ‘real life’… The opportunities for encountering other autistics are fewer than online, because there is a smaller pool of people local to me. This means it’s harder to be selective according to various criteria and less chance of finding compatibility. But at the same time, encounters are likely to be a lot more rewarding, because you are actually meeting people in the flesh. It feels/is more real, and doesn’t involve spending hours sat in front of a screen. And even if you don’t go on to develop a lasting connection with someone (which is the norm really), even short interactions with people you don’t really know can be fun and rewarding (I’m trying to convince myself of this last one lol as someone who is very introverted and struggles to interact with people I don’t know well…) But I think I actually feel less overwhelmed and more grounded by the thought of meeting new people irl (compared to using social media). There is a lot of anxiety to be fair, but a different sort to the info/digital overload sort I discussed above. It is more to do with the anxiety and exhaustion of interacting with people face-to-face. The fact online doesn’t involve this (unless you are video chatting) is a pro for online, but also a con (because you are gaining less info/knowledge about the person and your potential compatibility/connection). Depending on the people and the compatibility, this can be so rewarding – far more than can be gained through online in my experience (although I don’t want to generalise, or downplay the strength of online friendships that many have and feel, and that actually I myself have occasionally felt – not least the very thing which actually triggered this whole episode and change in me a few weeks ago).

So, finally, I just want to say if you are reading this and would like to connect with me online (and you meet some of the above criteria :p), that would be great! Also, if you are in a similar boat, or perhaps have some words of advice or comfort to offer or whatever else, feel free to leave a comment below or contact me on social media.

Also, I really love looking at photos on Unsplash and struggled to pick just one image for this post. So I’ve included a few more that I liked below. Yay for beautiful photography!

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I’ve stopped: On feeling bad (+ some tips for feeling better again)

This is basically a post about me complaining and feeling a bit sorry for myself. It isn’t a very hopeful or happy vibe (so perhaps I should include a TW for depression and general feeling bad). I do, however, try to identify the source of my problems and decided to list some strategies that might help towards feeling better (for those who might be in a similar situation).

This is hard to write. Not because I am struggling with writing or anything (although actually this post is probably a bit dis-jointed or whatever… in hindsight it was probably a bit early for me to write about all this, but I felt I wanted to so… yeah I just grabbed at the fact I actually felt motivated to do something semi-productive). Actually, it is the opposite: I simply cannot stop writing at the moment. This is a good thing because it is really helping me to process my emotions and feel better – at least in the moments when I am writing. But all the pages and pages I’ve written have been for my eyes only. So I don’t really need to edit or censor anything or think about what might be interesting or relevant for others to read. I’m not really used to writing about my life or personal and emotional issues on this blog (excepting perhaps the diagnosis series). I’ve been confused about this blog for a while, about where I am going with it, about what the point of writing anything is. (Perhaps that’s just because not many people are reading – although honestly I’m not sure how much difference this would make. Perhaps it is because I feel  I’m writing about the ‘wrong’ stuff?)

Anyway, I will come back to this later in a couple of posts time. First I want to write about what has happened to me.

I don’t know what concept or terminology to apply to what I’ve been experiencing the past couple of weeks. Autistic burnout, shutdown, depression, even lovesickness? Aspects of all these things probably apply. In fact, I basically meet like 90% of the symptoms for most of these things. And yet I feel none of them alone are sufficient to capture my experience. For example, from what I’ve read about one particular aspect of how I feel, the chemical processes going on my brain are not dissimilar to substance abuse – the highs, the craving, the withdrawal and recovery – something which is obviously distinct and additional to autistic shutdown or burnout.

But anyway, I think I have burnt out as a result of feeling bad. I basically just stopped. Stopped doing everything I usually do. My entire routine went out the window. I could not for the life of me construct a new routine, so I just drifted through the day trying to summon energy and motivation to fill my time in some way, struggling to decide whether or not I wanted to do something and agonising endlessly over the order in which to do things.

My executive functioning took a hit. I was still able to go through the motions of most basic self care and daily activities – like getting up, dressing, washing, cooking, eating, etc – perhaps because I am usually ok with these sort of tasks so it is hard for me to ever really lose them. I just felt awful the whole time I was doing anything and not asleep. Apart from basic self-maintenance, my only activities for about a week consisted of lying in bed, listening to music, watching YouTube and writing about how bad I felt. I didn’t talk to or see anyone for about 8 days. Gradually, I’ve been adding things back in – talking to people, going out for a walk or run, meditation, yoga. Today, I even opened up one of my autism books and read a few pages. 

There was a definite trigger. A very clear one. I’m not going to go into the trigger, except to say it is related to a person. It caused me to feel amazing at first, and then to become very emotionally sick, depressed and anxious, with implications for my physical and mental state. I felt achey, nauseous, short of breath, sad, worried, despairing, regretful, panicky, tearful, distracted, jealous, unmotivated… so overall not great! Most of all I had this huge pressure over my heart area and all these confusing emotions manifesting as painful swooping and stabbing sensations in my gut and chest.

I stopped caring about everything except this person. And it was entirely unhealthy and ultimately impossible and self-defeating to be caring about this at all because it was/is a dead-end. What I cared about most in the world was a non-starter. And I felt like I could care about nothing else in its place in an attempt to replace and fill the emotional void left by its absence. Emotions became strongly physically manifest and painful, to the extent I became sick with emotion. It was not a good time.

One worrying aspect of this was that I stopped caring about my intense interest – the research and writing I am doing around autism. Apparently if this happens to an autistic person, it is a bad sign. And I can vouch that it feels pretty scary to suddenly lose all interest and motivation over something you were previously so passionate about – and to actually start to become pretty resentful about it as well. My interest around autism takes up a lot of my life. Whilst it tires me out cognitively and is often emotionally stressful as well (it is often TMI, there are so many voices, there is ableism), it is a hugely motivating force and ultimately contributes a lot to me feeling fine most of the time. I stopped doing my usual work because I couldn’t fit any more external information or emotion into my brain. I simply cannot engage as much as I want and feel I need to. There is a lot of guilt involved in this. 

But then again, even if I did suddenly regain endless amounts of mental energy, I don’t think I want to go back to how much I was doing. I started to feel resentful about it all. About how much time and energy I was spending on it. Essentially, I’ve burnt out of doing my intense interest. Apparently I am having an autistic burnout consisting (in part) of burning out of focusing so intensely on autism. It was exhausting me. Despite the fact it is (/was?) what I love. Despite the fact this work suits my brain so much better than most other activities. I was doing too much, and now I need to slow down. At the moment this is taking the form of completely stopping.

For a while, I couldn’t picture myself returning. It made me feel panicky, all the backlog of stuff I want to read and write and understand. I was questioning the ultimate purpose of it all. Is this what life is really all about? Collecting information, trying to understand how and why things work or don’t work, writing it all down and trying to share it with others? Of course this work matters greatly (not necessarily what I’m doing individually, but in terms of the collective force of lots of autistic people sharing their thoughts about autism and trying to change things). But, equally, I don’t think it’s the most important thing in life.

Meaningful human connections are surely the most important thing. And unfortunately, I’ve been feeling a lot of regret and anxiety in this domain recently. I have a very small handful of meaningful connections in my life. I am and should be very grateful for this. Some people have far less. But, I am worried. I feel that I do not have enough now. And I fret about the future and what will happen to various people. I actually felt pretty contented up until recently. Then things started to change after my autism diagnosis (almost 3 years ago). I felt a stronger urge to connect more with my peers and especially with my new-found community. And now, with this recent episode, these feelings have suddenly sky-rocketed to a really intense level. Now I feel quite down about it all. The core of the issue is that I want more social connections, especially within the autistic community. I want to pay far more attention and energy to this from now on.

To maximise my chances of success, I need to shift my focus. I need to dramatically reduce what was my previous hyper-focus and basically develop a new one. This is because it is really hard for me to have too many focal points in my life to balance at once. I can basically only have one (plus self care and basic activities of daily living that have to happen). I know having multiple focuses in life is the norm for most people, and that for many autistic people too, it is a necessity or something they feel is worth the effort – to balance work and interests and social life. I’ve never been able to do this with much success. So I’m accepting this – to an extent at least – and consciously shifting my focus into a new area at the expense of another. I’m going to return to this issue in my next post.

Anyway, things are getting better – I think, and hope. It is still very early days. Just yesterday afternoon I felt probably at one of my worst points. I’m struggling to understand why I suddenly feel so bad when a few hours earlier I was relatively okay. It might have something to do with the fact I was being bombarded by a ceaseless chorus of lawnmowers, drilling, hedge trimmers, passing vehicles and other monstrosities surrounding where I live. I’m hoping it was this, because then there is at least some sort of rational – and potentially fixable – problem for why I felt so panicky. I am even more sound sensitive than usual, so this is not a good situation. It feels truly awful when all this painful noise is coming in from the outside when you already feel at your limit internally with everything and anything. It is really not okay and it’s become clearer than ever that I need to escape suburbia as soon as humanly possible.

In fact, there are a lot of things that need to change. I need to get back to normal emotionally, yes. But this does not mean I should go back to how I was living previously. The tricky thing is that I was completely fine in terms of my emotional health prior to two weeks ago. And then I really was not. Logic would dictate that I should just go back to doing whatever I was doing before since I felt fine then. But this episode of the past couple of weeks has been something of a life-changing one (or I hope it will be – I want to have learned from it). It has shaken me up in a big way, caused me to shift my perspective, and in a way I don’t think I can un-see or un-feel. Whilst I need to start feeling alright again, I also need to address the problems in my life that have come to the fore, and this means not settling back down into how things were before. Not because these things were necessarily wrong. But because I have changed.

To end on a more positive note, and in case you are also going through a tough time, I thought I’d list some of the strategies I’ve been trying to implement to feel better. It’s pretty standard stuff. But some of it really does work, at least some of the time.

– Try to remove yourself from any trigger (if there is something specific and you can identify it).

– Express your thoughts and feelings – talk to someone, talk to a camera, write stuff down, or type things up if you find that easier (and struggle with hand-writing like me). It’s okay if you don’t feel like doing this initially, but there will probably come a time when it becomes necessary and healthy.

– Research and problem solve. I felt at my most calm and positive when I was trying to understand what was wrong with me and why, and what I might be able to do about it. I researched my symptoms, read advice articles, watched videos of others experiencing similar things. I spent a long time thinking whilst staring into space trying to identify my feelings and explain them. This hasn’t made them go away, but it makes me feel more in control of them. I didn’t put pressure on myself to actually take action at this stage, but I could simply feel comforted by knowing what was going on (even if this was sometimes only vaguely) and knowing that it is in my power to do something about it when I am ready.

– If you don’t feel like talking to anyone irl, find others who you can trust online who are in a similar position to you – you could chat to them, learn from them, even watching a video can make you feel a lot less alone.

– Try to notice any negative thought patterns. Focus on thinking things that boost your self-esteem, rather than beating yourself up for what happened or for how you feel as a result. Cheesy as it sounds, make a list of reasons to be hopeful and grateful about yourself, your present situation and future.

– Look after your body – sleep, food, hygiene, exercise. These can be tough things to maintain, but if they slip away it’s only likely to make things worse. Hopefully you have people around you who can support you with some of these things if you need it.

– Remove pressure to do things when you simply don’t have the capacity to engage with them (although I realise that, unfortunately, for many there may be no choice in this – e.g. needing to go to work).

– At the same time, it will probably help if you have at least some things to do. Don’t pressure yourself to do them. But if they are things you enjoy, hopefully you will be able to do them, at least a bit. This might include easy, fun, distracting things like listening to music, watching things online, stimming, or a special interest. (If you have lost interest in your special interest I’d say at least try to engage with it a bit even if you don’t think you would enjoy it – it might help. Or try to go searching for a new one!)

– Other potentially healing things: music, nature, deep pressure, water, meditation, dancing, pets, spending time with others (in a way that suits you).

Also, things that made me feel a lot worse and which you might want to avoid if they do for you too: external noises, too much social (especially if the emotions are intense – either negative or too happy), pressure to move on from how you are feeling, pressure to do things, pressure to address things you don’t yet feel ready to, having to do certain chores like cooking, staying in bed a lot/being immobile for too long (but equally needing enough time to rest as well).

I’d love to hear from you in the comments if you feel similarly or have any feedback! 🙂 

Book review: “Autism: An Introduction to Psychological Theory and Current Debate”

Contents:

  • What is this book?
  • Why am I writing this review?
  • Issues with language
  • Other questionable things
  • Good things

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What is this book?

This book was written by two academics in the field of psychology who specialise in researching autism. One of them – Francesca Happe – is one of the most prominent autism researchers around. She wrote the first edition of this book back in 1994. This is the revised second edition and was released earlier this year. As there is an almost 25 year gap between the two editions and things in the autism world have evolved so much, we might expect there to be quite a difference between each book, and I’m sure this is the case (I haven’t read the first edition, but have a good idea of the sort of thing it might contain).

The book aims to be a comprehensive overview of autism research from a psychological perspective. Thus, whilst it certainly discusses genetics, biology and neuroscience, it is focused primarily on cognitive theories of autism. An unusual – and very positive and progressive – aspect of the book is that it explicitly and repeatedly highlights the value of autistic voices in autism research (and the autism field more generally) and includes commentary from autistic adults at the end of each chapter. The majority of discussion within the book is also in line with the neurodiversity paradigm/movement and an autistic rights framework – or at the very least the authors do a good job of highlighting the fact that there are multiple and often conflicting perspectives that we ought to be aware of (i.e. that autistic voices are challenging conventional wisdom and could do with being listened to). For these reasons, the book represents a significant step forward in the world of non-autistic authored accounts of autism/autism research.

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Why am I writing this book review?

So why am I writing this review? I’ll have to admit that I find it easier and often more motivating to write reviews about very negative, ableist books which have lots of things which, to me, are obviously very wrong with them. I feel an urgency to call these out and, after all, it is often easier to explain what is wrong with something than to explain why something is so good. And yet, it is important to highlight and praise discussions about autism which are accurate, critical and progressive, especially when it is so clear that authors have made a concerted effort in this regard. So I want to discuss some of the reasons why this is a good book – the book deserves it.

HOWEVER! In my view, this book is also not perfect. There are a few niggles here and there, a few things that I felt were a bit off. Some of these are more obvious than others. The fact the book is overall progressive and yet contains a few “faux pas” is perhaps indicative of the fact that the authors are not autistic (although a couple of “faux pas” did come from autistic contributors!) and, to some extent, are straddling the mainstream/traditional camp and the more marginal/progressive camp (especially in the case of the more well-known researcher who can be very much placed within the traditional camp – she helped build it after all). So, I read the book with a very critical eye, and here are my thoughts…

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Issues with language

One issue I had was that the authors pay plenty of lip-service to autistic perspectives on the language used to describe autism (i.e. use neutral, progressive and not pathologising terms), and yet on occasions I feel they fall short of fully honouring it. I don’t want to over-emphasise this, however, because this book is still a far cry from the ableist descriptors that litter most autism research literature. To a large extent, the book does reflect and uphold autistic majority community preferences. But there are some places it doesn’t, and this strikes me as a bit contradictory and ultimately means the book is not as brave as it could have been.

Early on, the authors state that “we have… minimised any use of medical and deficit-focused terminology” (p.iii). My response is that this is great, but why not completely eradicate it? If the authors agree that this is the right thing to do, then why not embrace it fully? Why the half-measure? To be fair, the use of deficit-based language is fairly minimal, but this just makes instances where it does appear even more striking. If the authors are sympathetic to autistic perspectives on how we should and should not talk about autism (which they claim to be), then there should be no reason whatsoever to use negative and damaging terminology.

The authors give a couple of reasons for why they use instances of medicalised language or language which is not otherwise accepted by the majority of the autistic community (such as person-first language). All are fairly poor excuses in my view. These reasons range from wanting to use language that is line with the mainstream literature (see below), to wanting to respect minority views within the autistic community (for a critique of this latter argument, see my post on autism and language).

Here is a specific example of one line of reasoning the authors give:

  • The authors do a great job of outlining problems with using the term “RRBIs” (an acronym for “restricted, repetitive behaviours and interests”) and acknowledge the fact the term is unpopular in the autistic community. But then they proceed to say: “Despite these considerations, we will use the term RRBI in this book to enable correspondence between our discussion and the wider psychological and clinical literature” (p.74)

Here is why I think this sort of reasoning and excusing is problematic:

Essentially, I would argue that change needs to start somewhere, especially as it is already long over-due. How will usage of negative language and underlying attitudes ever change if even the supposedly progressive people can’t resist using it? If people who have this sort of awareness around language and who – in theory – appear to side with progressive perspectives and terminology cannot make the shift, then frankly we have little to no chance of convincing the rest of the autism research establishment.

If the authors are so concerned with matching what is common practice then they should be using a whole bunch of other ableist terms like disorder, dysfunction, even disease (which they haven’t). So their reasoning for employing the term “RRBIs” is not really intellectually consistent.

The very same rationale is also at work in the authors’ decision to use the phrase “primary deficit model” in relation to autism. They choose to use pathology paradigm language such as this despite claiming, quite progressively, not to agree with it. Their reason for doing so is so as not to “whitewash… historical fact” (p.84).

Progress by definition relies on breaking with (non-progressive) norms. We do not really need nor want to be reminded of what has gone on in the past. We can and should discuss and critique ableist language but we should avoid using it in our texts outside of such discussion. We need to progress beyond this language eventually, so why not start now?

The authors rationale for opting to use a mix of identity-first language (ifl) and person-first language (pfl) is similarly problematic in my view. They, again, do a nice job of explaining why ifl is progressive and that the majority of autistic people prefer it. And yet, they choose to include plenty of pfl within their text: “We have included some person-first language although we know this will not be the preference of many autistic people” (p.iii). According to the authors their rationale for doing so is as follows:

  • They want to represent minority preferences within the autistic community (i.e. the fact some autistics prefer pfl or are otherwise ambivalent about the whole issue). Again, see this other post for my views on this.
  • They want to honour the historical debate, specifically the fact that pfl originally came out of the early disability rights movement (p.iii). Well, a) this isn’t exactly true, and b) surely it is more important to honour a current debate and context (as the book’s subtitle reflects) than it is a historical one? The fact pfl may not have initially emerged as an NT-imposed norm/preference, doesn’t change the fact that it has certainly evolved in this direction.

The authors apologise to readers of the future if this seems “retrograde” (p.iv). Honestly, it seems pretty retrograde now, especially in the context of a book which is overall progressive and given the fact the authors are obviously aware they’re going against a majority preference. Which is worse? Potentially offending the majority? Or potentially offending the minority (especially when many in that minority have no preference and are overall more likely to have less strong opinions on language than those in the ifl camp)?

Here are some other random issues which caught my attention with regards to language use:

– Use of “condition” (and quite frequently) – Obviously this is far preferable to “disorder”, but there’s no denying it is still a very medicalised term. We don’t call non-autism a condition, so why should we call autism a condition? Presuming we want to do away with the pathology paradigm/medical model of autism – which the authors seem to be in favour of – we should aim to avoid such terminology.

– Use of “syndrome” – Another very medicalised and deficit-based term.

– Use of “disruptions” (in relation to autistic development and processing) (p.5, p.38, p.103) – This is suggestive of something wrong and negative.

– Use of “disorder” (p.8) — The authors ascertain the truth about autism being a “biologically-based disorder”. The biological bit is true, not so much the disorder bit. However, further down the same page (and elsewhere in the book), the authors do say that it is better to use “difference” or “condition” than “disorder”. This is great, but does seem at dissonance with their use of “disorder” further up this same page.

– Use of “culprit” (in reference to potential causes of autism) (p.22) – Personally, I’ve never seen “culprit” being used in anything other than a negative context.

– Describing autism as a “learning difficulty” outside the context of intellectual or learning disability. I think that “learning difference” is probably more apt given that with the right environment for learning there is nothing about autism (in the absence of ID or learning disability) that can be said to constitute a barrier to learning. (p.23)

– Use of “symptoms” (p.38, p.76)

– Use of “treatments for autism” (p.40) – You treat co-occurring issues like anxiety or depression, you don’t treat autism.

– “Ameliorate” is used in relation to autistic developmental outcomes (p.53)

– Use of: “communication impairment”, “social impairment”, “is something ‘switched off’ in autism?”, “meta-representation and pretend play: missing?” (p.82)

– “If this holds, we could argue that problems in the social brain are based on disruptions to the specific type of processing required to capture the social world” (132) – Use of “problems” and “disruptions” in this sentence.

– “Meanwhile, autistic people are burdened with an unfiltered representation…” (p. 98) – This is very true, except that it is not a “burden”, and disrespectful to characterise our entire perceptual/representation system as such. It is simply a difference, one that is very often challenging, but also the source of great pleasure, and always heavily dependent on context.

– Describing autism as a “fascinating way of being” (p.iii) – Framing autism as “fascinating” (also as “mysterious” and “enigmatic”) is a very common trope. It feels a little othering and I’m not sure how useful it is.

– Use of alien trope imagery (p.101)

– The authors choose to include this rather awful quote from Green et al. which they appear not to see any issue with : “Crucially the authors [Green et al.] emphasise “a strategy to mitigate developmental risks and modify prodromal symptom trajectories, rather than “eliminate” a condition””. – So I agree we certainly don’t want to eliminate autism, but nor do we want to be engaging in any of the things this quote seems to be arguing for – no “strategy” for “mitigating”, there are no “risks”, no “modifying” of “symptom trajectories”.

– “As non-disabled peers start to become more independent, parents and siblings can feel the stressful impact of having an autistic family member more acutely” (p.114) – Please do not cast autistic people as inherently stress-inducing. If we are causing stress for others it is because we are stressed, our needs are not being met (and most likely by the non-autistics around us). It is not for no reason. (This statement is also a bit ironic when, a few sentences down, the authors mention possible links between feeling like a burden and suicidality. This is precisely why we need to stop thinking or saying these things).

– The authors state that puberty may bring increased violence in autistic people (p.114) – I am not sure how appropriate this is to mention (especially in a context where the violence done by others to us far outweighs our own, something which is not mentioned).

As a final note on language, the authors set out to “use language that is respectful to people on the autism spectrum and those who support them”. On paper this statement may seem perfectly fine and innocuous. But the reality is that it embodies the precise reason for why much of the debate and division around autism and language exists in the first place. It is often the case that those who support autistic people want one thing (e.g. often pfl) and autistic people what another thing (e.g. often ifl). Personally, I don’t see what the views of those supporting autistic people have to do with the language we use around autism. What matters is that the autistic person feels respected with regards to language use, and this has nothing to do with what those around them think is respectful. To me, this sort of thinking is simply reflective of a difficulty breaking with the long and broad trend of prioritising the needs and preferences of those around autistic people over actually autistic people themselves.

/

Other questionable things

– At the start of the chapter 1, the authors lay out the history of autism as encompassing two strands: the history according to researchers/professionals and the history according to autistic people and their families (p.14). – I would argue that it would be more accurate and respectful to represent the history in terms of three strands instead. The two-strand approach risks falling into the old habit of lumping autistic people in with parents/carers, as if we aren’t our own active agents. It also reflects a degree of ignorance /dismissiveness about the emergence of the autistic rights movement and how it largely developed as a precise result of autistic people standing apart from the perspective of parents (which they often criticised and came into direct conflict with), and seeking to develop their own self-run initiatives and culture.

– There is a folktale anecdote about a historic character (who is deemed autistic) committing a “faux pas” (p.14-15). I won’t relate the entire thing here, but suffice to say I think it was a bit weird and unnecessary to include. It seems to serve no purpose other than to provide some sort of entertainment value for (non-autistic) readers?

– The authors laud the work of Lorna Wing. Whilst she was obviously a pioneer and contributed a great deal, I would appreciate a more critical approach to her work (e.g. in my view the “triad of impairments” is neither a very nice nor accurate description of autism). More obviously problematic, the authors praise the work of Bernie Rimland, who essentially laid the foundation for the biomedical approach to understanding and attempting to “cure” autism, often through rather pseudo-scientific means.

– A huge problem in the book is including and recommending the book In A Different Key. This is a highly ableist, often inaccurate and quite frankly offensive book for quite a few reasons. Here is a great series of pieces by Autistic Academic critiquing the book.

– The authors relate that parents have been “prominent in shaping public perceptions of autism” — Quite right. But they don’t mention in what way. Nor do they mention that this predominance of parents might be a problem. I think it is an oversight to neglect to mention that much of this perception-shaping has been of a negative bent. In addition, parent-led advocacy has sometimes indirectly and even directly served to undermine autistic advocacy efforts (e.g. see the history of ANI outlined by Jim Sinclair in Loud Hands).

– The authors highlight the importance of “being informed” of the differing perspectives of the various stakeholders in the autism field. — Yes, but: It’s important to note that not all stakeholders are equal. Autistic people should come first and foremost. Not all of the perspectives within the differing stakeholder groups should be given equal weight. This is something which I feel is not emphasised enough. In addition, it is not really sufficient to be “informed” (which implies a degree of neutrality and passivity) and leave it at that. Ideally, we want all people in the field of autism – including researchers – to be supporting the perspectives of autistic stakeholders above all else and to be actively contributing to calling out any ableist views that may arise.

– Below is something which one of the autistic contributors said (on p.26) which I find a bit odd. (Note: I feel a bit sad having to criticise some of the autistic contribution, but then I don’t want to fall into the trap of having double standards for how I appraise autistic vs non-autistic created content – ultimately that’s patronising and ableist):

Martijn Dekker offers what is a rather scathing critique of the neurodiversity movement for being too prescriptive and ultimately exclusive, specifically in the way that it claims “there is no such thing as a suboptimal neurological configuration” (which is something I don’t think we should be disagreeing with..?). In apparent contradiction to the neurodiversity movement, Dekker states it is an okay thing for autistic people to see themselves as broken (also disabled – which is in fact very much encompassed within the neurodiversity paradigm) implying that autism can sometimes be equivalent to broken-ness. I’m also not sure what he means by “falling into the trap of taking our narrative too seriously”. Surely the narrative of equal human worth and rights is a pretty important narrative to be taking seriously. He finishes by saying that neurodiversity activists need to learn to “grow up” – which is an insensitive and totally irrelevant comment in my view.

I’m disappointed by the inclusion of this view, especially in the context of all the far more valuable, wonderful and representative autistic perspectives that could have been included on the neurodiversity movement. Instead the authors opt to include the view of someone who essentially criticises the movement and attacks a good proportion of autistic advocates (calling them distrustful and defensive). I’m not sure why this is. It’s not done to be representative, because this view does not represent the bulk of autistic advocacy. It is essentially bashing the movement the book is supposed to be promoting. The authors may want to offer critical and contrarian perspectives, but the inclusion of this particular critique seems to me highly questionable, playing as it does into harmful stereotypes about autistic advocates.

– Overall, the authors seem to me a little too invested in the early intervention narrative and the “early stage outcomes” (such as language development) that this could lead to. I can’t help feel there is a lingering underlying assumption that something about autism is not quite right, needs to essentially be set straight, that normative development is still being viewed as the goal. However, the authors do, at numerous junctures, remind us of the importance of questioning such assumptions, of the importance of listening to autistic voices on the matter, and they certainly emphasise the importance of an ethical framework regarding EI*. So it’s not so clear-cut. I do think, though, that they could have been a little more explicitly and forcefully critical of much of what goes on within EI practice and of the whole concept and desirability of EI in the first place.

*Questions they urge the read to consider include: “What message do studies send about the need to change autistic development (and the acceptable costs of doing so)? If we find a reliable early maker, what should we do with that information? Are justification for early intervention before diagnosis legitimate? Where does the boundary lie between supports that enable autistics to achieve their goals and supports that serve to normalise or suppress them?” This is great but I think they could have been more overtly critical – in terms of actually answering such questions (in progressive terms) – rather than merely raising them.

– The authors agree about the potential dangers inherent in biological research, that it may be directed towards the purpose of finding a “cure”. Still, they think it is wrong to suppose this sort of basic science research can’t align with progressive and community priorities (p.52). I would agree. Although I would add that there are potentially useful things which could be studied far more directly if they were pursued outside of this overriding goal of finding a biological marker. For example, they highlight that biological research into autism may help us to better understand co-occuring conditions (but surely studying these directly is likely to be more fruitful?). One troubling thing the authors relate is that “developing drugs to modulate how the brain responds to sensory input” might be one positive outcome and goal for this sort of research (p.138). — Well, first, I don’t think a person’s entire way of processing the sensory world can be boiled down to a co-occuring condition. It is not a specific medical issue, but the product of a pervasive and complex wiring of the brain that I think is unlikely to be easily – let alone safely – remediated through taking drugs. Even if this was someday possible, the ethical issues surrounding it would likely be huge (e.g. assuming sensory-perception is fundamental in autism, it could change a whole lot more than simply dampening painful hypersensitivity, including positive sort of sensory intensity, as well as non-sensory things, and potentially the entire developmental trajectory if the intervention is early and taken to the extreme). Basically, this statement falls into line with the narrative of trying to change who autistic people are (and potentially at a far more fundamental level than something like ABA which, whilst highly damaging, focuses only on the behavioural level).

– At one point in the book it is assumed that the reader is NT. (This is especially ironic given that in the very preceding sentence the authors talk about the importance of examining our assumptions!). On the plus side, the authors are clearly aware of their assumption. (But then why make it?) I’d like to think that plenty of autistic people are reading this book, perhaps even out-numbering nonautistics? Even if this isn’t the case, I would have liked to have seen it reflected more that autistic people are going to be reading this book. The statement in question appears on p.78: “It is instructive to ask yourself (if, like us, you are neurotypical Brit), is life for an autistic person a bit like life for me if I found myself plonked down in rural Japan” – I find this a slightly awkward analogy. The answer is an emphatic “no” (in large part because your sensory processing would still be typical and this is pretty core to autistic experience – something which they neglect to highlight, focusing only on social behaviour). Also, if you would like to try to empathise with our experience, just ask us about it rather than trying to come up with an imaginative scenario which doesn’t really fit.

– Puzzle pieces are used as part of illustrations on p.120 and p.136. This imagery is problematic and out-dated for a number of reasons. A simple Google search turns up plenty of autistic-authored posts explaining why.

– The authors see fit to include the Empathising-Systemising (E-S) theory (p.129-130). Whilst they do offer some good critiques (see “good things” below), their commentary about the many problems with this theory (and the associated “extreme male brain” (EMB) theory) does not go far enough in my view. Indeed, later in the book, the authors do bring up the EMB but without critiquing it in and of itself (only in terms of what the presumed associations with STEM might mean for how we think about autism and employment). They also refer to the EMB as an “information processing model” of autism. Really, I think it is best characterised as a “social-first” model (and a highly flawed one at that) in that it is essentially predicated on an assumption of low empathy which just happens to be situated on an opposing pole with strong systemising.

– Perhaps the biggest oversight in the book: there is no inclusion of intense world theory! In a book that is otherwise so comprehensive and wide-ranging, this is rather puzzling. It is also unfortunate given the many merits of this theory (especially compared to the social-first accounts of autism) and how it is perhaps one of very few theories that has actually gained some level of acceptance within the autistic community. (I do accept, though, that something like Enhanced Perceptual Functioning theory does come close to intense world, although I think its application to date has been rather more narrow).

– I felt the autistic contributions could have offered a bit more (although perhaps I am just yearning for a different sort of book – an entirely autistic-authored account of autism research perhaps!). Most contributions focused on relating personal experiences (which is fine, and I can see how this is valuable), with less direct reference to the subject matter of the preceding chapter. Most didn’t directly address or critique the contents of the book enough, in my view.

– Regarding the impact of ToM theory on public perceptions of autism: “…if [the ToM account is] misunderstood, [it] can make autism seem heartless” (p.136). I would say that even if well understood this is the case, and that the theory itself is heartless. The authors do, however, provide a useful breakdown of empathy (on p.144) in terms of: 1 – noticing emotional signals, 2 – interpreting mental states from external signals, 3 – empathic motivation, 4 – “appropriate” response. They clarify that most autistics only struggle with 2 and 4. This is a useful way to add nuance to the concept and to challenge generalisations/stereotypes, but they neglect to apply “the double empathy problem” to point 2.

– Media representation: The authors provide The Curious Incident of the Dog in the Night-time as a positive example of more “diverse representation” of autism (p.144). This is laughable given that in actual fact this book/play adaptation is a very bad example of stereotypical, non-diverse representation (it’s about a white male teenager who is skilled in maths, lacking in empathy and treated badly by just about everyone around him). Elizabeth Bartmess wrote a comprehensive critique of the book here.

– I’m not a huge fan of the “fractionated triad” theory of autism (which one of the author’s helped develop and still seems to be invested in). On p.96, it is suggested that the various aspects of autism may be unconnected at the psychological level. But to me, surely there is nothing in a person’s brain that is unconnected from other things, especially when what we are talking about are such broad all en-compassing processes as ToM, Executive Functioning and Central Coherence. To suggest these functions are independent of and unconnected from one another – or anything else going on in the brain like sensory perception – represents a step backwards in my opinion.

– On ToM, the authors state: “Regardless of what we might consider to be the evidence in favour of, or against, this theoretical model, learning that an autistic person may not automatically, accurately or confidently represent the mental state of other people is a very useful “handful” for a novice” (p.141) – Regardless? Regardless? REGARDLESS?!! Apparently it is okay to ignore the inconvenient fact that there is a lack of supporting evidence or theoretical soundness to this model and just continue to accept it blindly (mind-blindly perhaps) as has been par for course so far. (Note, if this wasn’t enough, the very same sentiment is repeated at two other junctures, on p.86 and p.96). They go on: “It reminds practitioners… to be patient when an autistic person in their care doesn’t quite behave as expected by neurotypical social norms” – Yes, patience is good, but the assumption that the autistic person’s behaviour can be boiled down to a ToM deficit is not so good. Most of an autistic person’s behaviour – especially outside of a social context – has precisely nothing to do with this. The authors also note that the ToM model has not led to effective therapeutic approaches to date, specifically in that teaching ToM skills does not produce change in areas that extend beyond the taught skill. – Hmmm, perhaps this is because the theory is rather rubbish, and does not actually tell us much about what is really going on in autism? Overall, the authors seem to be of the opinion that the “informal” impact of ToM has been a positive one (whilst the “formal” impact in terms of evidence-based intervention has been limited). I rather think they are in need of a reality check in this regard. A good place to start might be to read Melanie Yergeau’s piece on how ToM theory reinforces the systematic dehumanisation of autistic people. 

– “We must remember that the current drive for “early intervention” at all costs can be very stressful for parents” (p.142) – Oh yes, must not forget the poor parents. What about the autistic children who are actually having these therapies being done to them! At least parents have choice and control in the matter. They can choose not to invest in certain EI therapies or in over-therapising.

– The authors describe how parents often undergo a desperate scramble to get intervention in place “before it is too late”. Whilst I realise the authors are talking about intervention in terms of “meaningful help” (i.e. that has the acceptance of the autistic person/community), this “before it is too late” sentiment plays into wider attitudes about autism being something one ought to progress out of. The authors do, however, highlight how an emphasis on achieving normative developmental milestones could be at the detriment of following an autistic learning trajectory.

– On highlighting the importance of parent perspectives, the authors state: “When reflecting on the history of autism support it is clear how fundamental parents have been to the creation of infrastructure and knowledge about autism” (p.156) – I think it is a slight oversight to fail to mention that this has often been negative; they seem to frame it as an entirely positive thing. The authors go on: “…so we can see that recognising and understanding the parent perspective is also vital”. – Just because it was important in the past doesn’t mean it should be or have to be in the future. This logic does not make sense in that what happened in the past is not necessarily good, nor does it necessarily have to continue into the future. Yes, we need to recognise parent perspectives. But the authors are insinuating that these perspectives are equal to autistic perspectives. For example, they highlight the dilemma of often contradicting views between the two groups which can make it hard for researchers to “determine a clear community-influenced direction” for their work. Um, actually, autism parents are not the community in question, because we are researching actually autistic people, not their parents! The solution to the dilemma is pretty simple (presuming you can stomach it): prioritise the views of autistic people. Not just on equal footing with, but as the priority perspective. A good thing that is mentioned is the particularly valuable position of autistic parents (who straddle both camps), despite the fact they are unfortunately so overlooked, still today.

– “What about non-speaking autistic people, or young children? Who speaks for them?” The authors suggest that “a range of voices should be present”, from parents to various professionals (p.157) – Ok, so non-speaking autistics speak for themselves. Not speaking is not the same as not communicating. Teach them alternative ways to communicate. Not speaking is not the same as not having a perspective, or something to share. It is not the same as not knowing what is best for yourself and for other autistic people. According to an analogy which the authors go on to make, non-speaking autistics are apparently about as unreachable as “refugees in a faraway warzone”. I don’t quite think this is an appropriate way of looking at it. You need to find alternative ways of communicating with and getting views from these autistic people, not to simply presume them unreachable and defer away from them (unless they express this as their preference of course).

– Ok so this one is a bit of a howler in my opinion: The authors present guidance for doing participatory research and, in preparation for the data collection stage (when autistics will be visiting the research space), they recommend researchers should “check the space: do a sensory review, check for disrespectful posters” – This made me laugh. And what, are researchers supposed to then put the posters back up after we leave? Their comment suggests the disrespectful posters are somehow only a problem if autistic people happen to see them. Perhaps researchers should be asking why there are disrespectful posters in their research institution in the first place.

– The authors make reference to the Autism Quotient as if it is a good measure to use (p.158)

– On the question of “aren’t we all a bit autistic?” (p.158-9): The authors note that many autistics are understandably angered by this sentiment. And yet they go on to sort of argue in favour of it…? They state that “the answer does appear more nuanced” (than “no, we aren’t all a bit autistic!”). At the behavioural level, the say that there is indeed a smooth continuum on scores in questionnaires. (Perhaps this is because said questionnaires are highly unsatisfactory, self-report isn’t that reliable, two people could score the same for a trait but still have radically different qualitative experience of that trait, and autism can’t be defined at the behavioural level anyway). In terms of biology, they highlight that the same autism-related genetic influences are at play across the entire population, which suggests autism may be a quantitative difference as opposed to a qualitative one. (Yes, but I think there might be a point one passes after which a certain quantity of a thing transforms the thing into a different thing/quality). At the cognitive level, it appears more complex. WCC theory suggests more of a continuum with neurotypicality, whist the ToM account suggests a possible categorical difference (“as autistics do not automatically and unconsciously track others’ mental states (or do so through conscious calculation)”) – Umm, ToM theory is not fact, something the authors appear to have forgotten in spite of their earlier critique. Also, double empathy problem.

– Rather puzzlingly, there is a statistic on p.8 that 1 in 3 autistic people possess savant skills – something which is obviously not the case (I think the figure is more like 1 in 10).

– In terms of the lack of meaningful impact of research on autistic QoL, the authors state that this is in large part due to the gap which exists between research and practice – Yes, but I think it’s neglectful not to remind the reader that this is also due to the fact that the bulk of research does not focus on QoL issues to begin with (quite the opposite in fact).

– So I need to rant a little about the book’s attempt to unpick the causality between the social (namely ToM) and non-social (namely so-called RRBIs) aspects of autism. They discuss it a fair amount, present competing possibilities and are overall critical. But to me, it is sort of blindingly obvious what is going on (perhaps because I am autistic lol)? They start with the rather ridiculous and horrid traditional assumption that “RRBIs” are merely secondary to some core social “deficit” (as per the work of Lorna Wing). Namely, “RRBIs” are seen to stem from a failure in social imagination, i.e. simply from a “failure to think of anything else to do”, to fill the void left from a lack of (meaningful) social interaction. This is rather offensive, but thankfully the authors note that “this is no longer the prevailing explanation”. Instead, more recent accounts reverse the causality, recognising “RRBIs as inherently motivating and self-sustaining” and often a source of creativity. BUT, then the authors go on to suggest that the reward value of repetition and sameness may stem from anxiety and a subsequent need for control (which is likely) but that this, in turn, stems from confusion about the social world, specifically lacking ToM! I would argue our sensory-perceptual differences are more important here, as well as issues around unpredictability and change and the risk of our “RRBIs” being interrupted and misunderstood by autistics – AND NOT BECAUSE WE LACK TOM. (If anything, it is that NTs lack Theory of Autistic Mind and so can’t comprehend the sources of our anxiety, which is in itself a big source of our anxiety.)

Here, in my opinion, is a superior explanation: Sensory perceptual differences (that make overload and distress more likely) → high anxiety → high arousal → RRBIs to calm nervous system (also high arousal dampens EF which makes RBBIs more likely, and RRBIs reduce EF burden). Of course it’s not likely to be so strictly linear and simplistic, but it seems rather better than the whole ToM thing.

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Good things

There were plenty of good things about this book. Indeed, the positive aspects far outweigh the negatives. Whilst I can (and indeed have) listed all of the aspects I found questionable about the book, this isn’t possible to do in relation to all the progressive things – the blog post would end up far too long! So I have selected just a few highlights:

– One of the best things about the book is the inclusion of autistic commentary at the end of each chapter. The goal is to ensure the book is “firmly embedded in real-world community priorities” (p.2). The authors are refreshingly self-reflexive about their positionality (“what right do we have as neurotypical researchers, without lived experience of autism, to write an authoritative text on autism”! , p.10). As such they wanted to provide space for “contrasting, critical perspective or enriching our academic content with personal experiences”. Similarly, the authors are very aware of the importance of examining NT bias in the study of autism. They urge the reader to “bear in mind that we work within a paradigm defined by a non-autistic majority who have developed social rules and traditions that work for them” (p.79)

– The authors thankfully completely avoid functioning labels or any use of the “severe”/”mild” binary. On p.9 they critique the futility of trying to describe autism in terms of “severity”, stating that when invoking the concept of “severity” we are usually just trying to refer to the level of support a person requires.

– They do a great job of characterising autism as a neutral difference, with an individual’s experiences depending to large extent on, a) the environment and level of acceptance, and b) on the presence of co-occurring issues with sleep, digestion, physical and mental health. The latter need to be acknowledged as highly upsetting and disabling, but it is important to distinguish these issues from autism itself, and highlight the urgent need for more research and support in relation to these things.

– Heterogeneity is a key theme in the book. The authors highlight that the spectrum metaphor now seems “too linear to adequately capture the complex dimensions of variability between autistic people” (p. 39) and they propose a more useful concept of an autism constellation (drawing on the work of Caroline Hearst) in its place. However, the book is quite pre-occupied with trying to sub-type autism (for better or for worse – e.g. might this simply lead to compressing all this variability into pre-determined boxes all over again?), but at least they are very reflexive about this, suggesting that perhaps one option might be to simply embrace the diversity and leave it at that.

– The authors highlight the importance of studying autism at different levels – the biological, cognitive and behavioural. They emphasise the possible value of adding a fourth level of explanation as well – the sociological, so that we can better contextualise autistic individuals with respect to wider societal forces and look for societal-based explanations and solutions. They also emphasise temporal levels of explanation which can take the form of evolutionary time (which is perhaps less relevant), to developmental time and – what I think is very important and commonly overlooked – the temporal level of online moment-to-moment processing.

– The authors are highly critical of the lack of empathy trope and seek to deconstruct what is really going on. Here are a couple of great passages:

    • “This construct [of autistics lacking empathy] is highly offensive to a group of people who may be working harder than most to work out others mental state and to respond as expected by social norms. To label any mismatch between expected behaviour in a particular social context and what an autistic person actually does, as resulting from lack of empathy betrays a significant lack of empathy on the part of the non-autistic observer” – Amen!
    • Incidentally, whilst they do draw on E-S theory and EMB theory, they ultimately seem quite critical of some aspects at least, such as in relation to the EQ: “here the nomenclature of “empathising” is highly problematic.”

    • They discuss the double-empathy problem, in vs. out group status, the emerging empirical evidence that non-autistics struggle to read (and may be biased to negatively discriminate against) autistics, the need to be critical about normative assumptions in posing research questions and interpreting the data, and so on.

– Intersectionality is mentioned a fair amount. I especially like a passage where the authors encourage researchers to stay abreast of the latest philosophical, political and sociological debates and to incorporate intersectionality issues in their research, ensuring it is relevant to and reflective of autistic people of all stripes. They go on: “More than this, ideally autism research would be at the forefront of developing these debates, with results feeding back into a socio-political agenda for change” – Absolutely.

– “Diagnostic category of autism is no more than a social construct used to try to describe a pattern of phenomena that may be very different when externally observed versus internally lived” – Indeed!

– There is an absolutely fantastic paragraph that is worth quoting in full (p.98): “Some autistic people report having too much insight into other people – detecting every detail of someone’s behaviour, as well as feeling empathy very strongly. If so, it is possible that we have our models of autistic and non-autistic social skills entirely the wrong way around. Perhaps non-autistic people are relatively poor observers of human behaviour, and this gives us the ability to respond quickly and fluently, because we are only using the gist of the social situation to guide our decisions. Meanwhile, autistic people are burdened with an unfiltered representation of every detail that prevents them from making handy generalisations or using holistic approximations to guide their social behaviour” – I think this explanation comes very close to the truth (although I wouldn’t use the terminology of “burden”, it’s far more nuanced than that).

– My favourite chapter was that on information processing models of autism because I think these hold the answer. However, I was disappointed that the authors appear to be a bit lukewarm about them. They highlight how there is a lack of empirical testing in this area which is holding the theories back. But, to me, this says nothing about the potential usefulness of such theories – they haven’t even been tested enough so how can we appraise their usefulness! This is a very different state of affairs from something like ToM theory which has very much been tested and with very mixed and inconsistent results. The fact that most autism researchers have not been focusing on generalised information processing models is not a fact which can be used against them!

As a final point (and on the theme/argument which I personally find to be the most important in autism research), the authors note: “There has been, historically, an overwhelming focus on the social and communicative domain in psychological literature. Is it warranted? Does it correspond with the primary needs of autistics?” — I do not think that this over-emphasis is warranted, nor does it reflect the reality of autism (at least not at its core), let alone our primary needs. The authors stress at multiple junctures the continuing puzzle of the nature of the causal relationship between social cognition and domain general processing. To me, the answer – dare I say it – seems quite clear (at least in terms of what I feel makes most theoretical sense and in terms of how see it reflected in my own lived experience… I can see though how testing it might pose a huge challenge). Whilst it is a great thing that the authors are raising such questions and troubling old assumptions, ultimately I wish the book would have gone further in arguing for a non-social-specific account of autism. The authors note: “Have autistics been subject to a mysterious coincidental combination of differences in both social interaction and information processing styles. Why should these two things have occurred in so many?” – This is the crux of the issue. And I’d argue categorically that, no, it is not coincidental. They stem from and ultimately are one and the same process. 

Book review: “Send In the Idiots: Stories from the Other Side of Autism” (ableism alert)

I’ve just finished reading “Send In The Idiots: Stories from the Other Side of Autism”, a book (published in 2006) by Kamran Nazeer, an autistic civil servant in the UK. Once I got into it, I found it quite compulsive reading, perhaps because – unlike a lot of the books I read – it had more the feel of a story/novel (which makes for easier reading than more fact-based or academic style books), despite it being an account of true events. The book is based around a series of events in which Nazeer revisits his autistic former classmates, around 20 years after they all knew each other as children at the same special education school.

Nazeer is autistic himself so this is an autistic-authored account of autism. More specifically, though, it is an account of various autistic lives, interspersed with thoughts from his own life as an autistic person. It is not a book explicitly geared around seeking to describe or explain autism. It does, however, represent autistic lives and so, by implication, has things to say about autism. In addition, the author does at times talk about autism in a more direct fashion, especially towards the end of the book.

Unfortunately, I found the book to be overall rather troubling, to say the least. Some parts left a very sour taste in my mouth. This isn’t to say that all or even most of the book is troubling – far from it. But the only reason for this is because a lot of the book is taken up discussing things other than autism, or focusing on the very personal and particular specificities of the autistic lives being chronicled. Much of this material is likely to be interesting or valuable to readers. But I am left plagued by the question of whether I can maintain respect for these aspects in the context of the many troubling things that are also within the book. Where autism is discussed directly, it is usually not in a good way (although some of what the author relates is accurate and appropriate*). My point is that if Nazeer were to write an entire book dedicated to autism more generally, I imagine that it would be a highly problematic, and often ableist one (even more so than this current book).

(*E.g. He often does a good job of describing the social and “repetitive” traits of autism as a form of “containment strategy” in the context of sensory overwhelm. And there are nice quotes such as this: “the challenge for autistic individuals is that they are often overwhelmed even by their own minds”.)

This book doesn’t seem to have much profile within the autism/autistic community (perhaps because it is now a bit dated). I couldn’t find anything in the way of critical or autistic-authored commentary on the book. It did receive attention in the mainstream media when it was published. All of these reviews are positive, fail to notice or comment on the book’s ableism, and some of the reviews contain inaccurate and ableist comments themselves. For example, articles in The New Yorker, in the The Independent, and in The Guardian all praise the book. The Guardian calls the book “moving” (if by “moving” they mean “moves me to want to rip out entire pages from the book”, then sure). It also states that it has little patience for the cliches of autism (this is patently untrue – as is made very clear by all the quotes I list below). Here is one troubling segment from the Guardian’s review (my commentary in red):

“Today, Nazeer, at 28, is a Whitehall civil servant, a policy adviser. Obviously something went right (obviously). He is softly spoken, but not diffident; forthcoming, but also receptive; amusing and readily amused; friendly and befriendable (as if not being these things makes you less worthy than someone who is these things…?). Most important (no), he is fluent in the give and take of conversation, the spark of reciprocation that for most of us illuminates our social dealings but which remains the central mystery (no) to those affected by a disorder (no) often described as ‘mind blindness’ – an inability to intuit what someone else might be thinking or feeling (no)… There are pressure (civil rights) groups that believe autism is a special way of life and that when people try to treat autism, what they’re doing is obliterating this specialness (they are, but not only the “specialness”, rather everything about the person). But I dislike this sentimental idea that autistic people are somehow unreachable and that they should stay that way.”

I realise that I’m now venturing into the perhaps somewhat dubious territory of writing a book review about a book review, but this provides a taster (and fair warning) of what is to come. It is also worth highlighting that these reviews demonstrate how the sentiments expressed in “Send In the Idiots” are not exceptional. Rather, they fall right in line with our society’s predominant conceptions around autism (although I would like to think that we have evolved somewhat since 2006).

~

Here is why “Send In the Idiots” is ableist and deserving of being called out for its often misleading and dehumanising representation of autism. The quotes tend to get worse as the book goes on. I should mention trigger warnings for suicide and, obviously, for ableism (including ABA, the “r” word and unfortunately a whole lot more).

In what follows, the black text are direct quotes taken from the book (in which the use of “I” refers to Nazeer, the author). Blue text is me paraphrasing from the book. The red is my commentary (I tried to limit the amount of anger and sarcasm I felt compelled to express, but there are still instances of it).

  • “Autistic people are confined, to a greater or lesser extent, to a world of their own” – a totally inaccurate and dangerous trope

  • “An autistic child will remain entirely unaffected by another person’s anger or happiness, or by an argument going on between his or her parents ten yards away” – the reality probably couldn’t be further from the truth.

  • “I didn’t know how they [his former classmates] thought about their condition. It might be a source of strength: “I have overcome this”” – apparently to feel strong as an autistic person is to feel strong that you have “overcome” your autism.

  • “There are certain things that are missing from the lives of autistic individuals” – yeah, like some understanding and empathy directed towards us

  • “Autistic individuals find it difficult to develop intuition or empathy” – a not-so-wonderful misconception/dehumanising trope to launch us into the book (at least I knew what to expect from here on in)

  • “…autistic people may only be able to rely on one autos, their own”.

  • “…the world that lies beyond their reach”.

  • “Over the course of the evening we developed a rule that whenever someone started a compulsive activity, someone else slapped his or her hand”. – self-inflicted ABA?

  • “Autistic people typically aren’t good at relationships” – a rather blanket statement to say the least…

  • In this book, meltdowns are not meltdowns, but “tantrums”

  • “It seems unwise to encourage them in seeking enclosure” – on autistic children using a “hug box” when overloaded. If they want to and it helps them self-regulate, then why in the hell not?

  • “Autistic children prefer to play on their own (often true), though it’s not an informed preference (it truly is). They prefer to play on their own because they don’t understand that it may be possible to play together with another child (I don’t think so somehow…)”

  • “Autistic children simply don’t understand that there are minds other than their own, which might have thoughts different from their own. This is why they display so little interest in others” – Please stop spouting utter nonsense. (To be fair, Nazeer does go on to offer an interesting critique/set of adjustments to the ToM theory, but ultimately seems not to depart from its basic premise.)

  • The author describes himself as having been a “mean” child for displaying what are autistic behaviours (such as echolalia, or non-response). This is particularly ironic as he describes a particular instance of such “meanness” which occurs in response to a teacher being aggressive towards him.

  • On a few occasions Nazeer describes instances of himself suppressing his own stimming, which he frames as a positive thing.

  • “Why did you get better?” (a question asked of Nazeer) – by “better” I can only presume they mean “no longer seeming autistic”, or “having a job”, or “leading a normal life” or whatever.

  • “It is easy to understand why autistic people are often mistaken for being retarded” – this is something which simply should not be said (or thought, or implied at, or anything)

  • “…individuals at the harsher end of the autism spectrum” – I honestly haven’t heard this one before. Makes a nice change from “severe” I guess?

  • “Sheila [the mother] tried to work out if she [her autistic daughter] was feigning interest in order to please her father, which would be an impressive act of empathy for an autistic individual” – Oh my, this is meant entirely seriously. Please stop and think about what you are saying.

  • “The only thing that Sheila was sore about was that her daughter would never become an equal, never someone who would challenge her” – Sheila is the mother of an autistic daughter. This is obviously a rather repulsive thing to think, say and report in a book. Autistic people are of equal worth to nonautistic people. And if her daughter is unable or unwilling to challenge her (which isn’t really a thing), then this probably says more about Sheila than her daughter.

  • “Autistic individuals often impel sympathy. Other people want to protect them, to care for them” – We don’t want your pity or even your sympathy. Also, the reality is that autistic people are among the most vulnerable and abused groups of people in society. It is other people doing this abusing (even if under the guise of “care” – e.g. what Radical Neurodivergence Speaking calls “careless care-givers”)

  • “…they [the author’s parents] were scared stiff that I might go to college somewhere far way, not only because of the remains of my autism, but because I was only sixteen…” – where did the rest of your autism go?

  • “After all, there were few rewards to be derived from their relationships with autistic children” – Here the author is referring to autism professionals and questioning their motivation to work in the field. This is an incredibly ableist and damaging thing to say. I suppose he thinks the same must apply for the parents and peers of autistic children, that we are simply experienced as unrewarding people to be around?
  • “Autistic children did not typically know that they were being helped out. We did not typically form a bond with the carer.” – Oh we know. We might just not experience or interpret it as actual “help” (because often times it isn’t). Perhaps the reason we do not “bond with the carer” is in large part precisely because of their misguided attempts to “help” us.

  • “[Autistic children] didn’t necessarily get better”

  • “the child is left untethered and starts to fall into autism” – Ooo I haven’t heard this metaphor before! Note, here the author is describing the old “refrigerator theory” of autism which he (thankfully) does not agree with.

  • “I would do the same if I was a cancer specialist and a patient of mine discontinued treatment” – Here the autism professional is describing going to great lengths to chase up the parents of the autistic children she is working with (if they suddenly stop attending her sessions). Associations between autism with cancer are plain wrong. We are not “patients”. We do not need to be “treated”.

  • He bigs-up the “terrible” situation of the parents, how “terribly sad” it is “these parents throbbing with guilt and shame”. Incidentally, he doesn’t appear to have much empathy for the challenges the autistic children themselves might face, nor the damaging impact such parental attitudes might have on such children.
  • His views on autism being a genetic phenomenon and what this might mean emotionally-speaking for (nonautistic) parents are troubling. Nazeer remarks that parents have to live with the knowledge that they have passed on autism through their own genes. When the parent is non-autistic and the child is autistic he calls what the parent might feel “survivor’s guilt”, something which has the potential to introduce many more “prickles” into their interactions. – if this is your attitude, then yes (but as the parent you’re the one who creates those prickles with your own guilt and shame)

  • He describes the misplaced theory that autism is caused by failures in the digestive system… and doesn’t seem to contradict it.

  • “And there is emerging evidence that SSRIs tend to reduce the severity of autistic symptoms”. – If SSRIs help, it’s because they stabilise mood. They don’t act on autism itself. Also drop the pathologising language please.

  • One of the “hard, material symptoms” of autism includes “an impaired sense of empathy”.

  • The author makes an analogy between autism and Deaf culture, which is a great one to make. However, he makes it for all the wrong reasons, namely to argue that Deaf culture is valuable and legitimate, whilst autism/autistic culture is not: “Autistic people are in a different position, though, from deaf people… Sign language is a highly textured form of communication (he is implying autism is not). “Unless autistic people do receive the right treatment… they simply cannot engage in satisfying ways (I presume by “satisfying ways” he means neurotypically-defined ways)”. – Ultimately the author appears to be unaware that autistic people communicate in distinctive ways, in ways that are in fact communication. Furthermore, owing to this perceived absence, we are deemed to be in need of behavioural intervention to fill our void so we are able to learn to communicate “satisfactorily”.

  • “There may be something distinctive about autistic minds (there is definitely a lot of things distinctive about autistic minds), but at least some of that autism has to be removed, or eased, before autistic people can communicate meaningfully, even with one another, and set their minds upon the world” – There is just so much wrong with this statement. A complete reversal of every aspect of it would probably arrive at something like the truth. Autism is, in fact, a hugely, deep, rich and meaningful – though certainly different – way of communicating with the world.

  • “What is significant isn’t simply that we [the autistic people in the book that as adults got “better”] are all less idiotic than before” – There may be humour intended in this, but implying a connection between autism with idiocy? – not great

~

A few of the pages towards the end of the book became especially troubling, so I am going to explain and quote from this portion at length. As a warning, my own copy of these few pages is almost black with words of protestation, frustration and swearing.

Elizabeth’s story:

Elizabeth is an autistic woman and one of the author’s former childhood schoolmates. She tragically committed suicide as a young adult. For the book, the author is spending time with her parents (Sheila and Henry) to find out more about her and their lives. Clearly, the suicide is an awful end to Elizabeth’s story. I found it repellent that Nazeer had this to say after recounting what happened:

  • “I think that Elizabeth got better because of them [the parents], because of their attention, because they didn’t panic” (also, the author notes earlier, because of their intelligence as well) – This is the first time I’ve ever seen a suicide interpreted through the lens of “getting better”. It is also clear that the years leading up to this tragedy were not exactly easy for Elizabeth either (i.e. most appropriately viewed in terms of the very opposite of “getting better”). I have literally no idea how the author arrived at this view point. (In addition, at another point in the book, Nazeer states that “I got better, and so did all of my former classmates” – has he simply forgotten about Elizabeth, or does she no longer count or what?) To me, this seems like a questionable attempt to uphold the position of the parents. Whilst they certainly can’t be blamed for the suicide, it is not appropriate to doll them with praise for the way they tried to help (or not help) their daughter. I don’t see how intelligence, attention or calmness have much to do with it (in fact, perhaps the parents should have panicked at their daughter’s clear distress). The narrative seems to present autistic distress as inevitable, as un-amenable to outside influence, whilst presenting parents as angels that can ultimately do no harm.

  • “I am amazed that they [the parents] are not assailed more often by regret, or desperation [at their daughter’s suicide], but I am glad that they are not” – Yikes, this seems to be privileging the value of the lives of the non-autistic parents over that of their (deceased) nonautistic daughter. Regret and desperation are perfectly appropriate reactions when your child dies, especially in unforeseen and dramatic circumstances. It is categorically wrong of the author to praise the parents for not feeling these things strongly. Would the same thing be said if it had been a nonautistic child? That is the question.

  • This is perhaps the worst passage of the entire book. However, this comment does comes from a third person and not the author himself. Still, the fact the author would choose to relate it and without providing any criticism of what was said (except to say that the father was angry when he wrote it), is troubling indeed: In the immediate aftermath of Elizabeth’s suicide, the father felt compelled to write an email to some of the other parent’s of autistic children he knew. Nazeer relates the content of the email: “it asked all the parents not to overextend their [autistic] children, to keep them at home if possible, and not to allow them to have friends or lovers and certainly not to have children”. – This is not only deeply misplaced and inappropriate advice in a practical sense but, of course, deeply dehumanising as well, hinting at eugenic impulses.

Moving on from this episode of the book, the number of problematic and repellent statements accumulate further.

On early intensive behavioural intervention:

  • “there was strong evidence that early and intensive training of this sort could have dramatic results” – Yes, but perhaps “dramatic” of the wrong sort (especially from the sort he is talking about which is ABA). Also there isn’t strong empirical evidence for anything when it comes to EI in autism.

  • “our teachers did it [eye contact] to us almost fiercely and we began to respond” – the author presents this as a positive thing. Of course, a more accurate description than “began to respond” might be “feel coerced” or “learn to perform”.

  • “studies on this type of behavioural intervention have shown 20-point plus gains in IQ over two to three years, as compared to control groups” – utter rubbish

  • “such gains [referring to the above comment on IQ] are close to overwhelming in a field where even small improvements have enormous human consequences – these are neither “gains” nor “improvements” precisely because of their “enormous human consequences” – which are often overwhelming negative for the autistic person, especially over the longer-term.

  • “Some level of intervention is necessary, and it doesn’t often fail” – If he is talking about behavioural intervention (which he most definitely is), then this is totally false. These is no reliable empirical evidence that it works, and lots of anecdotal evidence that it causes long-term mental health issues for autistic people.

  • “I was afraid that I might not have come far enough”. “Might she have expected me to do better than I had?” – Here, the author has met his former childhood teacher for a chat in a cafe 20 years or so after having last seen her. He is aware and anxious that they are probably monitoring him for observable signs of autism. That he might be exhibiting signs of autism as an autistic person is apparently a highly undesirable thing.

  • “I had only reached the threshold beyond which I could even have this discussion with them [his former teachers/therapists] thanks, surely, to professional help, their professional help, and a lot of consideration, and work, and care” – This falls in line with the dangerous and ludicrous argument that any and all autistic “achievement” (as is being conceptualised here in highly normative terms) can be attributed to the ABA that the autistic received as a child. The author is clear in attributing all of his “empowerment” (which in itself is conceptualised in direct opposition to his autism) to the early therapy and education that he received.

  • Referring to behavioural interventions such as “aggressive eye contact”, Nazeer remarks that “these techniques work, but their success doesn’t tell us enough about the condition itself” – a) they do not work, they are not successful, b) perhaps they don’t tell you anything about autism, because autism is not a behavioural condition (or because what you are acting against is not autism at all).

On the gross misunderstanding and disparagement of (what is actually progressive) autistic advocacy

  • The author does not say which particular advocacy organisation he is referring to, but he has this to say: “it was a monthly get-together of an organisation founded on the basis that people like Rebecca and Ira [his two former ABA therapists] were trying to eradicate a distinctive way of being (this is precisely what they are trying to do) and that there was a need to stop them (there really is). According to the heterodoxy, autism was not a developmental disorder (it isn’t – the disorder part). People who are autistic suffered no lack (we don’t, at least no more than nonautistic people), their symptoms were not shortcomings (it continues…), but simply the characteristics of the autistic individual, and the way of life and the style of thought of the autistic individual were as valid as what clinicians defined as “normal” (they resolutely are just as valid) – The author does not follow this up with explicitly arguing against these statements, although he does state that his position is not aligned with such advocacy organisations. He is essentially relating the basic tenets of the neurodiversity movement and of an autistic rights framework as if we should be disparaging of these things – !

  • A little later on, Nazeer states that “the premise [of this advocacy organisation] was that… this [autism] was a creative and valuable way of being” – and this is something we should disagree with? It is not said straightforwardly or explicitly but the message seems to be that autism is not a valuable way of being (in the way that nonautism presumably is). This is ableism in its purest form.

  • In trying to determine the value of autistic life, he turns to a discussion of autistic strengths. He writes that most of the strengths he observed in his former classmates likely exist “despite their autism”. He then scrapes the bottom of the barrel to come up with possible autism-related strengths of his own, of which he finds only 2 or 3 and writes off as “trivial”. He implies that his strengths and accomplishments in life are separate to his autism. Moreover, the non-too-subtle assumption underlying all this is that autistic life does not have value in its own right, and that it can only attain value through the compensation of extraordinary talent.

  • The author denigrates any of the advantages that might be conferred by being autistic, stating it is “difficult to construct a political movement” around this (the political movement is built around equal human rights not “advantages”, so this is a moot point), and that these “advantages” (i.e. strengths or positive about being autistic) are “not emblems of a valuable and distinctive way of life” – Such crap. Even if you want to believe that autistic ways are not valuable, they sure are distinctive.

  • Further commentary reveals that he believes autistic advocacy to be based around the notion that autistics are better than everyone else because they are autistic. This is a juvenile straw-man argument. The neurodiversity movement wants nothing except equality. It would have been nice if the author had done his research before writing the book. 

  • “The view that autism has to be defended as a distinctive way of being (a notion the author appears to take issue with) originates, I think, from the same core belief [the other belief being that autism is a tragedy]: that autistic people don’t really get better (the book is essentially predicated on this whole false and ableist notion of “betterment” as equivalent to a “lessening” or “curing” of autism). And so instead of trying to measure up to societal norms, autistic people should be permitted to maintain their own (Oh we really should. And we don’t need “permission” either thank you).”

  • “And then there is the view that autistic people can’t be reached, or that they shouldn’t be, that their self-enclosure is or ought to be permanent” – I don’t think anyone subscribes to this view – not curebies (because they’ll do anything to break the so-called self-enclosure), and not neurodiversity advocates because we know better to think these things about autism in the first place.

On the notion of being “cured” of autism:

  • At three points towards the end of the book the author relates that his former teachers – upon meeting him as a adult – tell him “you are not autistic”. The reasoning they provide for this is that he was able to run “the conversation from start to finish”. It is unclear – until the very end of the book – whether or not this is a joke (it was in fact a joke – I think…). The point, however, is that Nazeer does not appear outwardly autistic to his former teachers. Not appearing autistic is conflated with not in fact being autistic. This game of teasing that the teachers indulge in, of judging whether he still appears/is autistic, is deemed to be an entirely appropriate one. It is also rather sickening that it is deemed to be the domain of the teachers (the so-called autism experts who, as it happens, barely know him as an adult at all) to determine this fact about him (surely Nazeer knows himself best?). The all-too-clear message is one of “congratulations, you no longer appear autistic, this is such a good thing we can all feel proud of”, whilst presuming that this means Nazeer barely is autistic anymore. In his own words: “I got better”.

  • Clearly, the author is still autistic. That’s just how autism works given that, you know, it’s an actual neurotype and not, in fact, some sort of disease. It is also clear from the author’s descriptions of his internal experiences that he is still autistic (not that we need proof of this, because of the aforementioned fact). It is also evidently clear that he goes to quite some length towards masking his autism, for instance, describing at several junctures how he employs social scripts or makes an effort to suppress his stimming whilst meeting with his former teachers. This, along with other learned coping strategies (perhaps with their roots in the early intervention he received) is why he doesn’t appear outwardly autistic. The whole thing is just rather ludicrous and tragic.

  • The author wants to seek the feedback of his former teachers about his observations (mainly about the other people) that feature in the book (which he is in the process of writing). They say there is no need: his observations are the ones that matter. This is all well and good. But then they imply that being autistic would diminish the quality of his observations, before jokingly remarking that “he isn’t [autistic] anymore” so “don’t worry about that”.

~

To conclude:

Now that I’ve actually collected most of the problematic statements in one place, I have to say that the impact of it all is more evident to me now than when I was actually reading the book. I think I’d like to conclude that this book borders on saying some truly shocking and repellent things about autism and autistic people (and, in truth, crosses and far surpasses that border). Most of these statements are not only completely inaccurate and misleading, but reinforce the dehumanisation and alienation of autistic people by our society.

This book, I think, is notable not only for its misrepresentation and ableism around autism (there are, after all, plenty of books like this), but also for the fact it is an autistic-authored account of such things. It serves as a reminder that autistic people are not immune to false or prejudiced and even downright repellent sentiments regarding autism. We are just as capable as anyone else of internalising prejudice of any kind from our society’s culture – including against our own kind. It is simply especially sad, I find, that these words are coming from an autistic person. Should we, as autistic people, know better? Can we be blamed? Who is to be held accountable? If not individuals, then society? If society, then what of individuals? We all need to take personal responsibility, regardless of neurotype. Being autistic does not give us a free pass or excuse to hold and propagate misleading, outdated or dehumanising views about autism (or anything else). We are to be held to the same standards as everyone else. We are subject to the same forces.

The book ends with the sentence: “The Idiots don’t need to be sent anywhere. We’re in the right place”. Perhaps so. I don’t know whether the author has progressed in his views in the intervening years since the book’s release. But, if not, perhaps he could consider taking an educational tour around the online autistic community. It’s evidently clear we need to “send in the (real) experts”.

Autism Events Season

From now on I’m dubbing April through to August “Autism Events Season”. It seems that a lot of autism-related/autistic-run events take place in the Spring and Summer months (at least here in the UK). This is good as it makes this time of year especially exciting for someone such as myself who looks forwards to these events. On the other hand, it also means that a lot of the excitement (and also the stress that can go around it) gets concentrated within these few months, whilst the rest of the year remains relatively sparse in terms of autism goings-on.

I am attending a few events this Spring/Summer and thought I’d write a blog post documenting each one in brief, along with some more general thoughts about autism events and spaces.

Going for Gold with Autistic UK Cymru and AWE, Cardiff

This event (link here) was held on Autism Acceptance Day in the Welsh Parliament. It was an impressive setting and encouraging to see that autistic speakers had been invited to such a venue to talk about such pressing and progressive perspectives on autism. The event was held by Autistic-UK (the Cymru branch) and the Wales-based autistic-run AWE project.

There was a morning networking session before the main event (which I unfortunately could not make), followed by a tour of the Senedd, with free lunch and drinks available. I was especially impressed by the fantastic array of literature and information they had available to browse (see my video below for a peek of this).

There was a great line-up of all-autistic speakers presenting on a wide array of topics, on education, employment, policy-making, autistic pride, all incorporated under the broader banner of autism acceptance. Overall, it was so incredibly refreshing to be in an environment with people expressing such progressive views (e.g. anti-ABA positions, the need for autistic pride, ableist representations in the media, and so on). It is no coincidence that all of the speakers and – I think – a good proportion of the audience were autistic. Autistic people + progressive views on autism tend to go together.

Hopefully they will be repeating the event next year. It felt nice to be able to attend such an event that is so local to me, and it would be great to see more of these sorts of events proliferating across the country so that more people can benefit without having to deal with the stress and cost of travelling long-distance. I also learned that Autistic-UK are holding their annual conference in Manchester in May and the line-up looks rather stellar (Steve Silberman is the keynote!) Unfortunately it’s a bit far for me to travel and the tickets are somewhat pricey. Hopefully, now I’m aware, I’ll be able to make their conference next year!

Autism and Wellbeing Conference, Swansea

I attended this event on Autism Acceptance Day at the Liberty Stadium in Swansea. I think it was the first event of its kind to be held in Wales (perhaps even the UK?). Things that made it unique, and stand-out from the normal run-of-the-mill autism events (such as The Autism Show)? It was predominately aimed at autistic people! Most of the attendees were autistic. It was also hosted by autistic people, many of the speakers and workshop runners were autistic and the event was clearly designed and being run with plenty of autistic input. Best of all, the content was addressed directly at autistic people (not parents or professionals) and in line with our priorities as a community (i.e. quality of life oriented, and nothing around therapies geared towards “normalisation”, or god forbid cure). Also, there was flappause, communication badges, and a sensory room!

It was a great experience, so hopefully they will be repeating it in future years (details of the event can be found here). The conference was entirely geared around autism and wellbeing – a very worthy topic indeed. Presentations and discussion centred around various aspects of physical, mental and emotional health with topics including physical activity, anxiety, sensory issues, social relationships, eating, technology creativity and more. My highlights include Rhi Lloyd-Williams’ workshop on autistic creativity (she wrote a post which touches on the conference here), and Emma Durnham’s workshop on sensory issues and anxiety, as well as her moving keynote speech. My only regret is only being able to attend 4 workshops out of the 12 or so because of limited time/clashes. Perhaps they could run the conference over two days next time.

My April “Document Your Life Project” video contains some footage (and lots of literature) from the conference if you want to get a better idea of what it was like:

Autism Arts Festival, Canterbury

Aaaahh, autism arts fest was sooo good. I’ve just returned from this and still reeling from it all. There was so much going on, packed into 2 days (plus an Artist’s development day beforehand which I unfortunately had to miss). Many of my thoughts and feelings towards everything remained unprocessed during the actual event. It’s generally only when I get home that the impact catches up with me. Not that I don’t enjoy and appreciate it during the fact. It’s just that there can be quite a bit of stress that goes along with all the goodness too, like worrying about timings and getting lost, worrying about food, sensory issues, feeling physically drained, social anxiety and so on. Now I’m home I can relive all the positive memories and also tap into what I think and feel about it all far more easily.

My highlights included:

  • Hearing from some of my favourite autistic writers – Laura James, Rhi Lloyd-Williams, Katherine May – about their work and lives. They read some of their work, chatted about being autistic and took questions from the audience. I really admire these women and it was rather awesome to see them in the flesh 🙂
  • Kate Fox’s comey performance was hilarious. I especially liked her autism-related content. She also wrote an insightful piece about the festival as well (see further below)
  • James McGrath showcased his new work “An Autistic Figuration”, a collection of poems, partly based around the mistaken notion of “curing” autism. He also gave away some copies of his book, “Naming Adult Autism” for free! (I didn’t take one as already have one at home which I’m still eagerly awaiting to read, and perhaps review)
  • Square Pegs performance of “Head, Shoulders, Knees & Autism” was so incredible. So much talent on stage. The feedback form asked us to give three words to describe the performance and I wrote “warm”, “moving” and “engaging”. It truly was. The solo singing at the end by Mel Golding was especially beautiful.
  • Annette Foster’s performance with her Super Autie Gang. What a way to end the weekend! Very emotional in parts, very funny in others. New autism treatments now on the market include: flamboyant fashionista ear-defenders, shameless toe-walking, daydreaming about an autistic planet, not to mention overwhelm avoidance tents (which can also be used as part of a spontaneous synchronised tent dance should the fancy strike you).
  • Seeing Sara of Agony Autie about, and catching up on her livestreams for another perspective on the festival.

Little fragments of speech I heard throughout the weekend stuck out to me and keep circulating in my head. I’m not sure why these fragments in particular, especially when there is so much that was said and which I heard which unfortunately I simply do not remember. Some of these include:

  • “I’m an autistic person who uses metaphor, which apparently is as unusual as a horse using a telephone. Now I’m aware that’s technically a similie – not that I’m pedantic or anything…” – Kate Fox, during her comedy show. (Made me chuckle)
  • “People are like little beacons of electricity” – Katherine May, during her reading/chat/Q&A sesh. (Hell yes)
  • I’m x and I like drinking H2O – One of the actors in the Square Pegs performance. (I relate to this hard)
  • “Are you neurotypical?” – Getting my “diagnosis” before the Annette Foster performance.
  • “And the people who don’t like small talk are running away screaming from you” – Rhi Lloyd-Williams on her experience of masking.
  • “It’s not a purrfect catalogue” – Jon Adams, A Catography of Autism Research (Seemed pretty damn purrfect to me :p)

I decided to write a short poem of sorts about my experience of the festival. I really know nothing about poetry at all. This is something like the third poem I’ve attempted to write my entire life. But I felt an urge to give it a go. I think hearing Rhi Lloyd-Williams read her incredible poetry must have inspired me. Some of it makes sense, most of it doesn’t really. Some of it will probably only have meaning to me.

Wooh ohh, I know red’s your favourite colourrr!

Little
beacons of electricity

White
light electric fright

Flap
flap flappin

Flap
clap flap clap?

As
unusual as a horse using a telephone

A
catography of cataloguing cats

Pink
glows, purple sparks

Fiddle
finesse, drum beat drumbs

Talk thought, thought talk, aut talk

Eyes, glances, flashes, glasses

Hum
of energy, feels right

Spin
that spinner, spin that autism treatment wheel

Binaries
be gone, boxes be gone

Applied
Box Analysis

Rabbits
rollicking and autistic zebra fish?

Red
badge, green badge, drop badge, no badge

Are
you neurotypical?

Dear
Simon Baron-Cohen…

Stim
stim stimmm, mmmmm

Plugs,
‘phones, plugs, ‘phones

Following me, following you

Wrong
place. Blue line?

I want to connect?

The
time time timetable

Chill
out, space out

Beam
in, beaming

Head
pain, head full

No
meaning

This
means everything

A couple of points I noted about being at the festival/in autistic space (or something very close to it) more generally:

  • There was a nice atmosphere at the festival (similar to Autscape, as Damian Milton mentioned). I felt quite comfortable, especially as the weekend went on and I got more used to everything. But I didn’t feel entirely comfortable – and this has nothing to do with the particularities of the place or the people or the goings on. Whilst anxiety decreases the more time goes on, physical and mental tiredness increase. There are some things that no amount of accommodations or inclusive, tolerant environment can remedy. The simple fact of being in a place with lots of people, in new surroundings, with the potential for uncertainty and various problems (however seemingly minor), means lots of input, quite a bit of noise, lots of language to process, lots of executive function needed. There is stress involved, unavoidable stress. The nervous system takes a hit. My body and brain feels it literally every second.
  • Related to the above, I find it hard to interact with others in these spaces (and many other spaces). Perhaps it would be easier if I was already with someone or actually knew people there (of course it would). But the point is that I find conversation hard not only with new people, but also with people I know well if the environment is new and full of other people and if there is background noise or chatter. I just can’t process properly. The meaning delays or drops out. I feel exposed and anxious because my nervous system cannot relax – even though I know this space is safe and welcoming. I can’t think that clearly. I really want to connect. But also, if I’m honest, I don’t want to get into conversations because I know it would just add additional input when I’m struggling to process what is already there (unless it happened to be just one or two people in a silent environment!). I’m trying not to feel bad about this.
  • On the bus home I thought about whether introducing a couple of new communication badges could potentially help facilitate a more diverse range of communication styles and help relieve anxiety for those who struggle in certain ways or spaces. Specifically, I thought about:
    • A purple badge indicating you’d like to engage in non-verbal communication only. This might include communicating via sensing and stimming, via sharing objects or activities, through signing, or simply through sitting next to each other in silence!
    • A blue badge could be used to indicate that you want to converse, but not in the place where you currently are. This could be used in a situation where you start talking to someone in a busy room (where you are perhaps most likely to find someone to talk to), but in order to successfully maintain the conversation it would be better if you could take the conversation outside or to a quieter space. This might help the issue I (and perhaps others) face of wanting to talk to people, often needing to be in busy places in order to find them, but then not wanting/being able to talk much because of the stress of trying to process properly against all the background chatter and movements of others. I’m not sure how well this would work in practice though!
    • This made me think back to Mel Baggs’ piece on Autreat which I read a while ago. Two issues she mentions are that a) whilst the green badge certainly facilitates initiation, it doesn’t necessarily facilitate maintenance. As she puts it: “The shape I tried to fit this into was that I was bad at initiating. Putting on my green badge was supposed to solve this. Often it didn’t. Often it just got me in interactions I still wasn’t equipped to participate in.” b) She notes that most of the people at Autreat are “not very ‘sensing’, and can’t interact with me on that level, when interacting on the sensing level is one of the main reasons I’d go anywhere to interact with anyone in person in the first place”. Perhaps the blue and the purple badge would help somewhat with each of these respectively (presuming there were others with similar needs or preferences of course).
  • This makes me think about inclusivity, about biases and power imbalances (as Kate Fox mentions in her article, see below). I am privileged to be able to attend these sorts of events. The festival certainly did a good job of incorporating sensory-based and non-verbal performance into the schedule. But the majority of performances still required the processing language. This is usually fine for me, as long as I feel engaged with the speaker and content. But for others it might not be. Also, on the other side of things, presenters generally need to be able to communicate verbally with the audience in order to convey their content. This is something that would terrify me. Assuming for a moment that I had good content I wanted to share and that others were interested in hearing, having to public speak (no matter how small or friendly the audience) would be enough to prevent me from sharing. I’m sure there are plenty of autistic creatives out there with content to share who are either not able to or prefer not to communicate verbally (so autistics who are nonspeaking, selectively mute, phobic about public speaking or just prefer not to speak for whatever reason). Perhaps in future we might look towards incorporating opportunities for language-based presentations which are delivered non-verbally and less directly (e.g. through voice or video recordings, AAC devices, slides, typing on a word document, even through having someone else read content on the author’s behalf).
  • Finally, I started day-dreaming about an autism festival for other disciplines as well. An autism science fest. An autism tech fest. An autism social science fest. I’m not sure how well these would work in reality, but it would be interesting to find out if anyone wants to take up the challenge! Of course, science and tech plays into autism stereotypes, but there is probably plenty of demand and potential for a festival in this area. The good thing about the autism arts fest is it challenges the horrible myths about autistics lacking imagination and creativity. Personally, I’m neither a science-y person, nor an artsy person (though I’m much more artsy than science-y). My place is in the social sciences. What would an “autism soc sci” festival look like (despite the name being far less catchy than “autism arts”)?

If you’re interested in reading more about the festival, Kate Fox summed up her thoughts on it in this insightful post – https://katefoxwriter.wordpress.com/2019/04/28/autism-and-the-arts-festival-university-of-kent-10-things-i-learned/

I found this especially interesting:  “Autistic people seem to vibrate and hum at a higher, faster frequency than non autistic people and are sensitive to this. That means there are more very calm and very frenetic patches of energy throughout autistic space. It can be contagious. Some people are calm-seekers, some are frenetic-seekers, some oscillate. There was enough space for everything to coexist.”

And this especially important: “These burgeoning, fragile, necessary autistic spaces may be the foundations that can help explorations to, and with, allies, companions, partnerships. However power imbalances within and outside these spaces must be acknowledged and respected. Being able to be there was a privilege not available to all. (That shouldn’t be taken to mean that the path to being there wasn’t differently hard for so many of us)”.

If you’d like to read more perspectives, Sonia Boue (creator of the neurodiverse NUNO art project – which had an exhibit at the festival), wrote about her experience here, as did Rhi Lloyd-Williams (writer and poet), here.

Still to come: Autism Show (June), Cardiff Autistic Pride (July), Autscape (August)

Actually, Autism DOES Define me.

“Autism
doesn’t define you”

“Autism
isn’t you!” or “Autism isn’t who you are!”

“Autism
isn’t your personality” or “Autism isn’t your whole
personality”

“Autism
is only part of you” or “Autism is only one part of
you”

“Autism
isn’t a part of you”

These
are all statements I’ve heard/seen people say/write about autism in
relation to self. Also feel free to replace the “you” in all of
the above with a “me”, because some autistic people say such
things about themselves, and a few are very keen to emphasise
these sorts of sentiments.

Why do people, autistic or otherwise, feel the need to say these things? We need to look at what lies behind these types of statements. What assumptions do they carry? Let’s do some unpicking…

NEGATIVITY

What
is undeniable is that all of the above statements revolve around
creating some degree of distance between autism and the self. Why do
we generally like to create distance between things? Usually it is
because one of those things is seen to be negatively impacting upon
the other. In this case, it is pretty clear what is presumed to be
negatively affecting what. (Hint: the concepts of “self” or
“personhood” are not seen as inherently negative things impacting
upon a neutral and innocuous “autism”.)

This
is one reason I dislike these genre of statements: They imply – and
non-too-subtly in my view – that autism is a negative thing.
Meanwhile, we, as people, are neutral/positive things, and so it is
surely right and sane for us to want to distance ourselves from this
autism negativity so as to preserve our neutral/positive status as
people. This is what these statements say to me.

SEPARABILITY

This
leads onto my second point: separability. If autism is not a part of
me, let alone a defining part; if autism is not in fact me, then we
have established a separation between being a person and autism/being
autistic. Somehow, the two aren’t quite compatible in people’s minds.
Otherwise, why the need to introduce any distance? Distance to serve
as a reminder that here we are talking about two quite seperate
things: personhood and autism. Quite seperate apparently.

There are two big problems with introducing this separability. First, it isn’t in the slightest bit scientifically accurate or reflective of neuro-biological reality. Second, it leads us down a well-worn road of the systematic dehumanisation of autistic people. I will attempt to address each of these below (although there is significant overlap between them).

AUTISM MSSNG?

People
seem to think that autism is a thing, a something, somewhere. But
where exactly is autism? This is a genuine question on my part. I am
legitimately puzzled as to precisely where people think autism is
(given that they don’t seem to accept autism = person).

Autism
is seen as its own thing, an entity unto itself. It is appendage
(person “with” autism), it is a disorder or condition that
somebody has. It is something belonging to a person, it is not
that person themselves.

But
autism does not, cannot, exist outside of a person. How can it? We
don’t have autistic air, autistic trees or autistic cats (although
honestly all cats are surely autistic :p). We don’t have autistic
anything, except for autistic people (which sort of suggests that
autism might have something to do with being a person).

Then again, perhaps I’ve been looking in all the wrong places. Perhaps I haven’t been paying close enough attention to what people “with” autism are presumably carrying, to what is attached to them (then again my attention to detail is pretty good, heh…). If autism isn’t a part of you, then it must be visibly and externally attached to you. But I see no sign of anything. Autism itself (as an appendage) seems to be somewhat missing.

It
seems the noun “autism” has far too much power here. Perhaps we
should be using the adjective – “autistic” – in its place far
more. Over-using the noun, as is definitely the case (e.g. as in
person-first language), has probably contributed to us seeing autism
as a thing, an object, as something other than a person, as something
separate (which was probably the entire point of course). Nouns are
for things. Adjectives describe, and often define, what people are.

DEHUMANISATION

The
fact autism can’t be seen – because it doesn’t actually exist outside
of or in addition to a person – explains why there is a ridiculous
amount of metaphorisation surrounding autism. People insist autism is
a thing, a thing outside of or other than a person, and yet it can’t
be seen or defined, hence why we fall back on using metaphors.
Metaphorisation is a technique we tend to use in relation to things
that are hard to pin-point, describe or understand in their own
terms.

Moreover,
the inherent negativity associated with autism, explains why we have
so many autism-as-seperable metaphors specifically. In a chapter in
the book Loud Hands, entitled “Metaphor Stole my Autism”,
Zoe Gross provides an excellent account of how and why this sort of
metaphorisation has taken hold, and of its detrimental effects.

Ergh, yuk. We don’t want any of that insidious autism actually being associated with actual personhood, that gets to close to us, the real people. We need to shove some big bulky stuff around that autism, between it and being a person, we need to contain and constrain it somehow.

The
fact that autism is framed this way: as negative and as separate to
personhood, feeds directly into dehumanisation. If autism is (big
breath…) barrier, bubble, seige, death sentence/living death,
alien, puzzle, mystery, void, trap, other world, wave, kidnapper,
battlefield, machine, or any other number of sinister-sounding
metaphors, then the person “with” this autism is only really a
person without it. (Or, for the less extreme version, autism is
always seen as somehow detracting from the person you have in front
of you).

Perhaps
underneath it all, we are simply presumed to be neurotypical? If this
is the case, the autistic person (who isn’t seen as existing)
may be in danger for their life (which, after all, doesn’t really
exist – and if it does, it’s probably not worth living, and
certainly not as much as nonautistic life). All this sets the stage
for treating autistic people as less than (and/or simply serves to
legitimise poor treatement that is happening anyway). This
maltreatment can take the form of highly misguided attempts to remove
what is in actual fact an autistic person’s personhood (being
autistic) in a bid to make them a real (aka nonautistic)
person. This can mean ABA (attempting to plaster over autistic
behaviour), it can mean encouraging dis-identification from our
identity (e.g. through ableist messages which often become
internalised), or in the most extreme form it can mean literally
removing our autistic-ness/personhood – the only means of doing so,
being to kill us.

So
yes, I’ve made a leap from “autism doesn’t define me” (which may
seem like a fairly innoncuous statement on the face of it) to
filicide within half a blog post. Perhaps, given the wrong context,
the two aren’t as unconnected as they might first appear.

ACCURACY

Returning to the other problem: accuracy. The other day, I heard an autistic person say “autism isn’t part of me” (something which goes far beyond a mere “autism doesn’t define me”). If autism isn’t a part of you, then what precisely is it a part of? First of all, where is it? Not inside of you? (we covered that above). If you accept that it is inside of you, but not a part of you, then how does that work? Where inside of you does “the autism” like to hang out? In your left hand? Your tiptoes? Your stomach? One part of your brain, but with all of the other parts being left untouched? And, presumably, if this place inside of you containing the autism is not really a part of you, then it is entirely unconnected from everything that is you…?

None
of these questions make any sense. This is because autism is not a
thing. It is therefore not localisable in space, not fixable (in both
senses of the term), it cannot be seen or found anywhere. This
is because autism is not really an it. “Its” are reserved
for objects, not for people. We’ve just established autism is not an
object-thing.

So
here is the real answer we’ve all been waiting for:

Autism
is… a person! Autism = person! Autism = human brain, an entire
body-brain in fact!

Shock-horror,
right?

If autism is not a part of you, then – I’m sorry to say – there is no you. (Of course, you can think-feel it is not a part of you, and still exist. Not feeling or believing autism is a part of you, is not the same as it not in fact being a part of you.) You would not be here, existing in this world, saying that “autism is not a part of me” if autism was not a part of you. Autism is you!

Autism
is a word used to describe a certain type of brain wiring and
associated neurology (which extends into and throughout the entire
body). Unsurprisngly enough, we can’t be in this world without a
body-brain. Hence autistic people cannot exist in the absence of
autism (in the absence of their autistic body-brain). You see: Autism
= person. Autism = autistic person. Quite simple.

As
for “autism doesn’t define me”: People who say this accept
autism is a part of them, at least. But then they stop there. There
has to be a place to stop, right? Because it cannot be all of them.
It is not what they are all about. Surely, for the love of
god, there must be some nonautistic bits swimming around in there
too? Some sort of redeeming quality?

Ultimately,
I think that the “autism doesn’t define me” statement betrays a
lack of understanding about what autism is. Autism is not just a
label, a diagnosis, nor even an identity. It is all of these things,
but not without being a neurology. And guess what? You can’t have
bits of autistic neurology mixed in with bits of NT neurology. It’s
one or the other. So for autistic people, autism is all of our
neurology, no question.

But does our neurology define us?

Well,
it influences every single thing we sense/don’t sense, feel/don’t
feel, say/don’t say, do/don’t do; the way we perceive, move, cognate,
emote, relate, every single moment of every day, from cradle to
grave… so that sounds pretty defining to me. Neurology defines
perception and movement, which are the buiding blocks for cognition
which then shapes behaviour, feeding back into perception and
cognition and on and on in a self-reinforcing multi-directional loop.
There’s nothing left untouched by any of this really is there?

Woops,
looks like autism might just define you.

TO CONCLUDE

The real question, I think, is not “does autism define you” as an autistic person (it does). It’s “do you accept that it defines you?” And if not, then why not? I’d hazard a guess and say that the answer likely has something to do with ableism. Perhaps, then, it’s this we should be railing against, and not autism. The problem is not being defined by autism, it’s people’s (mis)definition of autism.

Autism is a “lens” (a metaphor, in this case, for a body-brain) through which all is filtered (perhaps even our autism is filtered through our autism!). “Not being defined by autism” presumes that autism has its limits, that there are places autism cannot go. That somehow autism cannot encompass the totality of the human experience and all its possibilities. If we accept, instead, that autism touches everything, that it has no bounds, that it is not in itself limited or defined in certain ways, then it probably wouldn’t matter so much to be said to be defined by it, would it?

To my mind, autism should occupy the same “status” as nonautism. It should be seen within the same genre of things (although we are not talking about things) – as a neurotype, and not as a psychiatric disorder/condition or anything else. To any NT readers, I ask, are you defined by your nonautism? You’ve probably never thought about it (which reflects the privilege of being within the neuro-majority), but you most certainly are. And in just the same way that we are defined by being autistic. If you were said to be defined by you nonautism, it probably wouldn’t bother you much (I can’t quite imagine any NT proclaiming in exasperation “I’m NOT defined by my nonautism!”). After all, nonautism doesn’t imply any stigma, or limits, what you can or can’t do, how you must or must not be defined. You are simply free to be a person. You are nonautistic in your definition, without it ever being defined.

I want a similar thing to happen for autistic people. I think there is one important distinction, though. As a marginalised minority group there is obviously a lot of power and potential in us emphasising our identity/definition as autistic people. In fact, having this ignored and/or misunderstood is a large part of the reason why we face many of the struggles we do. Having it be made visible and emphasised is a necessary and important way for us to get our rights met and, hopefully, to some day get to the point where “autism defines me” is not some sort of strange, questionable, icky (or even necessary?) thing to say.

Suggested readings on this topic:

“Autism
defines me”, by Autistic Zebra –
https://autisticzebra.wordpress.com/2018/10/28/autism-defines-me/
. This is a good piece which raises a distinction between being
“defined” by autism and being “limited” by autism. When
people use defined, they might really mean limited. Still, the whole
being/not being “limited” by autism thing is something that could
do with some unpicking too.

“These poor unfortunate mixed metaphors are trapped in a wall of autism”, by Angry Autie – https://angryautie.wordpress.com/2013/09/16/these-poor-unfortunate-mixed-metaphors-are-trapped-in-a-wall-of-autism/

“Metaphor Stole My Autism”, by Zoe Gross, in the book Loud Hands: autistic people, speaking.

30 Things to be Aware of this Autism Acceptance Month

Open House at Paraf Hills Village.png

What is “autism awareness” all about? What are people trying to spread “awareness” of? Some forms of awareness that can be found in mainstream circles (i.e. being propagated by certain big autism “charities” or organisations and among certain groups of parents and professionals) include being aware that:

  • Autism exists

  • Autism is a disordered, tragic, challenging and burdensome thing

  • We desperately need to help autistic people and their families (most often the emphasis is on the parents) who are “living with” this autism affliction

  • This “help” can be achieved through donating to and supporting certain organisations (e.g. Autism $peaks) geared towards finding a “cure” or at least various ways of “treating” and “ameliorating” autism.

All this (besides the first one) is a load of ableist bull-crap, quite frankly. Autistic people have been calling this stuff out for years, if not decades. Yet still, it persists.

Here are 4 key things that autism awareness should be about:

  • Yes, that autism exists. But, this is a very basic first step, and one that has mostly been achieved (at least in the developed world). Still, I do think it would be nice if more people had “neurodiversity” on their radar, especially when meeting people for the first time who might appear different. The important thing, though, is that people have good information that is going to help the position of autistic people in society. Sometimes ignorance is better than the wrong sort of awareness.

  • Autism is a neutral difference, where positive and negative aspects are highly dependent on context (especially the sensory and social context). Autism is not a disease, disorder, nor even a condition. It just is. Much like non-autism just is.

  • Autistic people are human beings that deserve the exact same rights as every other human being. This is the essence of the neurodiversity movement. (And this is why I fail to understand the perspective of those who “oppose” the neurodiversity movement, which is essentially equivalent to opposing equal rights for all. But then again I suppose that explains the ubiquity of straw-man arguments against it).

  • Because we are a neuro-minority in a world not catered to our needs or preferences, we often experience autism as disabling. As a result of this we require extra things that others do not have, i.e. supports and accomodations (but what some may write-off as “special treatment”). It is our right to have these things too, even though the majority of people in the world do not need them. This is because these “extra” things often support or are even what enable our basic rights to be met.

Most of the things we should be talking about and aiming for this month (and every month really) have more to do with acceptance than awareness. This is why many in the autistic community support a renaming of April to Autism Acceptance Month. We haven’t got there yet… which is why it’s important that we keep talking about it.

Most people are aware of autism. Even if they are not, much of the awareness that is being spread around probably isn’t going to help them towards becoming the sort of aware we might want them to be. Some awareness campaigns are empty of significant substance that would actually help educate and spread real understanding. Others are actively backwards and harmful as described above.

Below, I’ve created a list of 30 things I wish the world could know about autism and the ableism that too often surrounds it – one thing for each day of Autism Acceptance Month. The list is geared mainly towards allistics and potential allies of the autistic community. As it will hopefully demonstrate, it is not so much autism that is in need of public awareness, but the ableist attitudes and practices that people often attach to it. As a society, I think we are more in need of Ableism Awareness Month than anything else at this point (see Erin Human’s post series for a great primer on this).

And, of course, it would be great if people didn’t stop at mere awareness of these things, but took actual steps to act on this stuff in day-to-day life. We can spend time endlessly trying to spread around progressive rhetoric (in the hope people will listen), but ultimately we want the ideas behind this rhetoric to become embedded in the collective mindset and reflected in everyday behaviour and practice.

You can also check out the Twitter Thread for these 30 steps:  https://twitter.com/SianIsAt/status/1111599117275484160

And a YouTube video I made on the topic: https://www.youtube.com/watch?v=P6ptTiPjWRY&t=5s

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30 STEPS FOR AUTISM ACCEPTANCE

.

  1. BEWARE AWARENESS: People are generally aware of autism. We have awareness. Awareness can also be really bad and dangerous. Sometimes ignorance is a better alternative. Really, though, we need #AcceptanceNotAwareness and #AutismUnderstanding
  2. ABLEISM ALERT: Does awareness help #ActuallyAutistic people? A lot of our difficulties stem from ableism which may stem from the wrong sorts of awareness. We need Ableism Awareness Month. For a primer check our Erin Human’s post series
  3. AUTISM SPEAKS (STILL) SUCKS: Despite attempts to clean up rhetoric, not much has really changed. The NT-run “charity” claims to speak for autistics, but achieves quite the opposite, shouting over or ignoring autistic advocates especially #AutismSpeaksDoesNotSpeakForMe #AutismSpeaksForItself #BoycottAutismSpeaks
  4. #LIUB IS NOT A MEANINGFUL ACTION: It does nothing to actually help autistic people. It only promotes “awareness”, and often misguided awareness (read: fear-mongering) given the links to Autism $peaks. #RedInstead #LIUR #LightItUpGold
  5. AUTISTIC ADVOCACY: Good alternatives to Autism Speaks are autistic orgs like ASAN, AWAN, Autistic UK, along with hundreds of individual advocates. Autistics are not limited to self-advocacy, we should be running the whole show. #AutisticsRise #AutisticApril #iamanadvocate
  6. AUTISTICS SPEAKING: We have a lot to say. We are the real experts on autism and on ourselves, so a lot of that stuff is very valuable. Seek out our voices, learn from them, amplify them, don’t drown them out with your own. #WeAreLikeYourChild 
  7. WHERE CAN YOU FIND US?: The autistic online community is thriving. Find us, listen to us, ask us questions at #AskingAutistics or #AskAnAutistic. Try #ActuallyAutistic Twitter, Tumblr and YouTube or the vast autistic blogosphere. You can check out my resources page for a place to start.
  8. DIFFERENT NOT LESS: Autism is not being broken, it’s a different way of experiencing and being in the world. Disorder, deficit, dysfunction, disease, etc should not be OK terms to use. Stop saying them and start calling out others who use them. #PositiveAboutAutism
  9. DOWN WITH BINARIES, BOXES AND LINES: Autism is autism. There is far more that unites us than divides us. Diagnostic divisions are kind of arbitrary. Nor are we “fixed” at certain points along a (mythical) spectrum. An autism “constellation” or “colour wheel” is a more appropriate metaphor. 
  10. FUNCTIONING FAIL: To call someone “high” or “low” functioning is arbitrary, archaic and highly ableist. “Is that NT high or low functioning?” – this question doesn’t make sense, nor should it for autistics. #FunctioningFluctuates. Plus, “functioning” often reflects ableist norms.
  11. EVERYONE COMMUNICATES: Not speaking is not the same as having nothing to say. Some of us communicate via alternative means like typed words. All of us – speaking or not – communicate non-verbally and through behaviour. Just because it’s not your native language doesn’t mean there’s no message. #BehaviourIsCommunication
  12. WHAT IS AUTISM EVEN?: Most think of autism as a “social communication disorder” and stop there. But social behaviour doesn’t exist in a vacuum. Socialising is sense-making, meaning social behaviourial differences are the product of perceptual differences. Perception → Cognition → Behaviour. Autism is a set of sensory perceptual differences at root. 
  13. SENSORY IS CORE: What would autistics benefit from most? Social skills training? Not really. ABA? Really not (see 14). Sensory perception is fundamental to how all of us experience the world. For many autistics, perception is INTENSE, and so low arousal environments are often a big help above all else. #Sensory
  14. ABOLISH ABA: Given our heightened sensory-social sensitivity, intensive in-your-face behavioural intervention is the very antithesis of what we need. It is also unethical, teaching us our bodily autonomy is not our own and geared towards normalisation #ABAIsAbuse #YesThatABAToo
  15. BIOMED IS BIGTIME BS: Quack, quack, quackery. These “treatments” are expensive, time-wasting, unnecessary, illogical, probably illegal (or should be), immoral, abusive, painful, and potentially fatal. Please stop. #Autism #Biomed #Quackery #AutismAcceptance
  16. A CURATIVE FOR “CURE” MENTALITY?: You can’t cure or prevent autism without being a eugenicist, i.e. without destroying the person you started with. There is no removing autism once it already exists. In future, society may develop a way to prevent us from existing in the first place. But is this a future we want? It sure isn’t the future we want. It shouldn’t be what you want either. Surprisingly enough, we want quality of life, not to not exist.
  17. LANGUAGE MATTERS: The words we use are important. They lay the foundation and they have a very real impact. Rhetoric shapes representations, shapes thoughts and feelings, shape actions. How we talk about autism is critical. Unsure what words to use? Simply follow the lead of autistic people.
  18. USE IDENTITY-FIRST LANGUAGE: Autism is a defining identity, not an appendage to an otherwise “normal” person. IFL is the majority preference of the autistic community. This deserves to be respected. Allistics should not get a say in this. You can read more about more thoughts on this here.
  19. INTERSECTIONALITY ISSUES: Autistics come from as wide a variety of backgrounds and groups as non-autistics. We are every age, gender, sexuality, race, culture, class and disability type. It would be just too convenient if we were all cis white middle class males. Occupying multiple positions of marginality usually means less visibility, more ableism and more disadvantage in life. We need greater awareness of and action against intersecting systems of oppression. #SheCantBeAutistic #RacialisedAutism #NeuroQueer
  20. REMAKING REPRESENTATION: Autism has traditionally been seen as the domain of white middle class boys. Just because some of us get more visibility than others, doesn’t mean the rest of us don’t exist. We need to up representation of autistic adults, autistic females, trans and non-binary, autistic people of colour, and autism across a wider range of classes, cultures and countries. #SheCantBeAutistic #RacialisedAutism #NeuroQueer
  21. WHAT NOT TO SAY: If someone is telling you they are autistic, pay consideration to your response. What would you want to hear if it was you? Avoid pitying, condensation, contradiction, minimising, unsolicited advice. For some specifics of what to perhaps avoid saying, see here.
  22. THE TRUTH ABOUT VIOLENCE: This is something that is done to us far, far more than something that is done by us. Media and popular representations around autism and violence are often highly erroneous and damaging. In actuality we are a group that is highly vulnerable to abuse. Moreover, this abuse is more likely not only to be ignored and accepted but even celebrated. This needs to change.
  23. NOT ALL STAKEHOLDERS ARE EQUAL: Autistic people matter the most in debates about autism because it is our own lives at stake. #NothingAboutUsWithoutUs, yes. But also we should push for more, to be leaders, not just included in the status quo. Our representation, voices, needs and preferences should be first and foremost.
  24. “CIVILITY” CAN BE A BARRIER: We’re talking about our rights here. Having them granted to us shouldn’t have to depend on our asking nicely in accordance with the rules of respectability politics. We shouldn’t even have to ask. Turns out, we’re having to fight. In the words of Autistic Hoya we need our “shoes off, and fists up”.
  25. SOCIAL MODEL: To a large extent, disability (to be distinguished from impairment) is located in wider social structures and attitudes. This is to say that many of us would not be or feel disabled in an autistic majority world that would likely be adapted to our needs. The (sensory and social) environment is perhaps the most important thing to pay attention to.
  26. WHAT’S CO-OCCURRING?: What many of us struggle with most are mental and physical/neurological conditions that commonly accompany autism. We need research, services and interventions to help with these, not with “treating” autism itself.
  27. SOCIALLY DIFFERENT NOT DEFICIENT: Social connection can take many different forms. For example, socialising can take place through silence. One way is not necessarily better than any other. Neuro-bigotry is asserting that one way is the only way and the best way.
  28. EMPATHY IS A 2-WAY STREET: Rather than a ToM “deficit” located within the autistic mind, social difficulties in autism are perhaps best explained by the mismatch in ToM between neurotypes. NTs seem to struggle just as much with Theory of Autistic Mind. I’d highly recommend Damian Milton’s work on the double empathy problem for more on this.
  29. APPEARING ≠ FEELING: Autistic people are not unfeeling, emotionally immature or delayed. If anything, we often feel more and perhaps more complexly. We certainly experience and express emotions differently. This isn’t the same thing as not having them. Our outside may not match what’s inside in a way you might expect. Don’t judge us based on appearance.
  30. WE ALL HAVE EQUAL INTRINSIC WORTH: Worthiness as a human being is not dependent on being able to speak, on being “independent”, on being employed, on being in a relationship, on being “just like everyone else”. Just being is enough. 

 

 

Autistic Travel Anxiety

1

Autism and travelling may not strike people as the most likely bedfellows. And it’s rather easy to see why. Travelling is like experiencing the outside (NT-dominated) world on steroids. It tends to combine many of the aspects of the world that autistic people find most anxiety-producing and challenging, all in one intensely concentrated package from which it can be hard to escape: sensory (over-)stimulation, social contact (especially with strangers, new acquaintances, small talk, etc), the need for planning and organisation, the ability to cope with change and unpredictability, the need to be flexible, the need to have a certain amount of energy, and so on. In fact, the very pinnacle of the travel experience (at least certain types of travel, perhaps more on the adventurous side of things) is often defined by assertions to “get out of your comfort zone”, “meet lots of new people”, “embrace uncertainty”, “expect the unexpected”, “try roughing it”, “try this new thing” – all things which don’t exactly scream “autism-friendly”.

Of course, there are many different forms of travel and it is definitely possible to avoid certain aspects, maximise other aspects and generally design a travel experience that is more autism-friendly than not (whatever this might mean to you). However, there’s no doubt that this in itself can pose a massive challenge. Because of the nature of travel, there are always likely to be at least a few things which don’t fit that comfortably with us (as is the case with everyone, of course – it’s just likely to be more things and at a more intense level for autistic people), even with the most carefully-crafted adventure.

At this point, I also want to mention that autism has a lot of stereotypes surrounding it. Not all of these (or many, or even any of them) apply to all autistic people, and certainly not all of the time, across all contexts. Even if an autistic person does conform 100% to the stereotypes of preferring to be alone, needing a low-arousal environment and an unchanging routine (among other things), they may decide that they want and are able to change all this up and make sacrifices for a period of time in order to reap the benefits that travel can bring.

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My relationship with travel

My own thoughts and feelings about travel are quite complex and conflicted. In fact, I have something of a love-hate relationship with it. I grew up in the privileged position of travelling quite frequently and widely with my family as a child and teen. Then I embarked on a series of my own adventures in my late teens and early twenties, largely within the context of studying Geography, French and International Development at university. My Dad is a keen traveller and I think this had an important impact on me in terms of fueling my love for travel, one I’m very thankful for. I grew up seeing him reading travel brochure after travel brochure, watching holiday programmes and hearing about the various exotic places he’d been. To this day, I get excited thinking about all the places in the world and what it would be like to visit them, and my bucket-list has become overwhelmingly long as a result. To a large extent, I feel that the travel bug is in my blood and relatively stuck there, for better or worse.

Then I found out I was autistic. In the years since I slowed down where travel was concerned (especially in terms of independent, longer trips). I became “more autistic” (see this post for an explanation of what I mean by this), more sensory sensitive and more anxious about venturing out to new pastures alone (not that I hadn’t felt anxious before – far from it). I needed time to process my diagnosis, learn about autism and myself, and connect with a new-found community. I still need and want to dedicate most of my time and energy to these things. However, the more time has gone on, the more I’ve felt the pull of other parts of my identity and my past interests and passions – with travel being prime among them.

In general, I feel conflicted by a pull to indulge the part of me that needs/wants sensory calm, plenty of alone time, a predictable routine and lots of special interest time, versus the part of me that craves newness, stimulation and adventure. All of these things are me, and all of these things are related to my being autistic (yes, including the craving for adventure!) This is because my autism is all of me, not one part or appendage, it informs every single one of my perceptions, thoughts, feelings and experiences. And yet sometimes, I do feel as though I have two different people or brains inside my head pulling me in opposing directions. Sometimes it can be quite alarming how quickly and easily I can shift perspectives and change my mind about things – even about decisions I thought I was 100% certain about.

I think the answer, like so many thing in life, is balance. The question, though, is where is that balance to be found? I need a bit of newness and adventure in my life – and travel is a great way to get that. But mostly I need stability. I think most of the difficulty lies with forcing myself out of that stable safe comfort zone when that is where I spend most of my time. After all, the more you are in your comfort zone without stepping out, the harder it is to get out, even just for short visits. It is always the transition out that is the hardest. I find that once I am out it is not so bad.

So what is the point of this post? Well, as I describe below, I am currently facing the prospect of my first solo trip abroad in 4 years, the first since my autism discovery. I feel I have changed a lot since my last solo trip (which was to North America) in 2015. For example, it seems astounding to me now that I did this trip without my noise-cancelling headphones! I rarely step outside my front door without headphones on these days.

For the other autistic people out there who have a requirement, need or passion for travel, combined with stress and anxiety about doing so, the below might help with how to move forward. It will cover the three main areas I have been struggling with (and that others might struggle with too): (1) travel indecision (whether you want to go in the first place, and whether it is a good idea for you to go), (2) identifying sources of travel-related anxiety, and (3) practical coping strategies if you do decide to go ahead (update: #3 will be covered in a separate future post!).

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To go or not to go? Dealing with travel indecision

A few weeks ago I booked to go on a sightseeing trip to Central Europe for 10 days in early May. I thought about where I wanted to go, when and (the all important) why. I carefully weighed the pros and cons. I planned a route and rough itinerary. I booked all of the transportation and most of my accommodation. And then a couple of weeks later, having done all this planning and booking, I “decided” that I no longer wanted to go.

I’ve put “decided” in quotation marks because it wasn’t really a decision. I can have quite a lot of trouble when it comes to making decisions, especially lately. Really, it was more a gut feeling of anxiety, dread and discomfort, one that I was rather reluctant to have to live with for the next few weeks (and especially in the few days leading up to the trip, as well as during the actual trip of course). Since that day of quite suddenly getting cold feet I’ve been wavering back and forth, unable to come to a final decision about whether or not to go ahead. My departure date is fast approaching. It’s about a month away. This may seem like plenty of time to some, but I’m the sort of person who needs and likes to have a lot of time to get mentally and physically prepared for travel.

A difficulty with making decisions is something that quite a few autistic people seem to grapple with. This is one reason we often rely on routines, which eliminate the need to constantly make a series of small decisions about our day-to-day living. It seems that a similar sort of difficulty might apply to bigger decisions as well. I realise that the decision to go travelling isn’t the most life-changing one (at least not for a small rather spur of the moment trip like this), but it is pretty big in my mind right now. The decision of whether or not to go will have a huge and determining impact on the next 10 weeks of my life. And from my perspective now, this seems like a big deal, even if in the scheme of my entire lifetime it will likely work out to be rather minuscule.

Anyway, some autism-related things which I think can contribute to difficulty making decisions in general (for me at least) include the following. I think some of it stems from executive functioning issues, some from alexithymia, some anxiety and perhaps some with balancing internally vs. externally derived wants and priorities.

  • Having quite a logical and detail-oriented mind. This can mean that I tend to see a lot of the variables and potential consequences involved in a decision – perhaps too many, and all from a logical perspective. A list of pros and cons often turns out to be quite balanced with each side equally valid and compelling, which leads to grid-lock. Perhaps most people take emotions into greater account. Whilst I do have strong emotions in relation to big decisions, they can be a bit vague, difficult to identify and explain, impossible to quantify and measure, and hence ultimately hard to act on.

  • In addition to the above, I can also have a difficulty holding all of the relevant points to consider in my head at once. This is why writing them down helps. (But then inevitably the list ends up being quite long and also difficult to consider as a whole.) It is as though I have compartmentalized decision-making processes in my head for different aspects of the decision and have difficulty integrating everything together to come to an overall position.

  • Anxiety can also cloud the decision-making process. In contrast to the above, having strong negative feelings – especially if they are hard to pinpoint and explain – can overpower a logical cost-benefit approach. Something may seem like a good decision on paper, but it may just feel totally wrong. For an autistic person, anxiety in relation to travel is likely to be higher and so perhaps more likely to cloud or influence decision-making. And this can actually go either way. It could be that having the knowledge anxiety may be preventing us from doing something could sway us to do it (which may or may not end up being the best decision).

  • Feeling overly pressured (even without any actual external pressure, the pressure can be entirely internalised) to travel because of expectations and associations. For example, travelling might be seen as a sign of a person’s “normality”, ability, competence, “coolness”, dynamism, worldliness, even sociability, and so on. For myself, this is something I have internalised a fair amount. I have internalised the belief that travelling is a very worthwhile thing to do, to the extent that I actually think this to be true. Perhaps it is true. The reality, though, is that it is subjective. Markers of success and wellbeing should be specific to the person concerned. The problem is that societal markers of success can hold a lot of sway over us. Where does autism come into this? Well, obviously, the above is something that applies to everyone. But some autistics may be more at risk of being swayed by external pressure, and for the worse. There are perhaps two reasons for this. First, what we may need/want for wellness and satisfaction in life is likely to be a bit different (or at least achieved in a different way) to the neuro-majority. So internalising majority views could end up being more out of line with our own self and hence more detrimental than it might be for an NT. Second, some of us are naturally quite compliant, people-pleasing, and eager to fit in. Indeed, some of us have been explicitly taught to be this way through behavioural training. This may compel us to do what others are doing or to try to live up to the values that society holds in high esteem.

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Weighing the pros and cons of a trip

The standard advice for decision-making is to list and compare pros and cons. This is what I did before booking. The pros list came out stronger, which is why I ended up booking. But now, looking back I realise that my weighing of the options was largely based on logic and “what makes sense”. The problem with pro/con lists is that it can be hard to take emotion into account and assign it accurate weighting. For example, you could come up with 100 pros and minimal cons, and yet be left with an overriding feeling of “this is wrong” or “I just don’t want to” – something which can be hard to quantify and rationalise in such a list.

My gut feeling is that I no longer want to go on this particular trip and when I think about cancelling I feel a huge wave of relief. In this sort of situation I’m not sure whether it’s best to go with your gut or with what is the “rational” response (to not waste money, to not “give in” to the anxiety, etc). In other words, I’m not sure whether I’ve actually changed my mind and come to the conclusion that this is no longer the best decision (from a rational perspective), or whether it is just anxiety influencing what I think I want to do. Trying to remind myself of why I wanted to go in the first place might help clear this up bit.

Unfortunately I chucked out my list of pros and cons after I (thought I’d) made the decision to go (I was that certain). I will briefly try to replicate it here from memory. This list is fairly generic and can be applied to others who are thinking about the potential benefits and drawbacks of travel. 

Pros:

  • See and do new things. See visually beautiful things (architecture, nature, art, etc). Stimulate the senses and mind. Have fun. Get new perspectives. People watch and see how things are in other parts of the world.

  • Have a break from home and routine. Come back feeling refreshed and motivated to return to normal life. Memories, stories, photos, videos.

  • I feel travel is something that is worthwhile, beneficial and something I want/should want to do. I like the idea of travelling more in future, and so this trip would be a step in the right direction. In this context, not going (when I don’t really have a good reason besides “it makes me anxious”) might set a bad precedent for the future given my ambitions.

  • A challenge to see how well I cope. An experiment to see where my limits lie now (because they seem to have changed since a few years ago). Hopefully, a sense of satisfaction and increased confidence upon completion.

Cons:

  • Anxiety in the preceding weeks, and especially days. Very high anxiety the day before, on the day, and perhaps at various points during the trip, especially at the start. (On the other hand, I’m not sure if I might be overplaying how anxious I might feel during the actual trip, because I find anticipatory anxiety is the worst part.) For specific sources of anxiety, see below.

  • My excitement and motivation for the particular places I am going is not huge. (This is more an “interim” trip, because I can’t go where I most want to at this current time.)

  • Financial expense

  • Time out of routine work and projects – in terms of time needed for preparation, for the actual trip, and for recovery

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Sources of autistic travel anxiety

I’m feeling a lot of generalised anxiety about my up-coming trip and am having difficulty pin-pointing why specifically. So I decided to make a list of what I think is behind my anxiety. It’s not hugely specific, and broad enough that others might be able to generalise it to their own situation. Most of the points apply to the actual travel experience, rather than pre-departure which admittedly can also be stressful. Obviously, you don’t have to be autistic to experience any of these. In fact, travel anxiety is hugely common – a search on YouTube revealed endless videos on the subject. Still, all these things are likely to be more common and heightened among the autistic population, as they are in everyday life.

  • The shock of everything being new and routine being almost 100% thrown out of the window.

  • Sensory stress, particularly sound (I am visiting a series of noisy capital cities), and especially given my heightened sensitivity at this point in my life.

  • Social stress: I hate talking to strangers. I dislike and am bad at small talk. I don’t like unexpected interactions. I struggle to communicate comfortably when there is background noise. I get exhausted from seeing and being surrounded by people for long periods. I don’t like queuing or crowds.

  • Organisational stress: Navigation and the risk of getting lost. Being on time and the risk of missing connections. Planning sequences of activities for each day. Needing to write lots of things down and juggle various documents and papers. Doing all this in the context of newness, sensory and social stress.

  • The unexpected. Even if nothing unexpected ends up happening (and based on past experience, it will, and when you least expect it), I experience an almost constant background fear that anything could go wrong at any moment.

  • The (admittedly small) risk of something real really going wrong (e.g. injury, attack, meltdown, harassment, being badly delayed/stuck/seriously lost, losing important things, etc)

This list is specific to me and my particular upcoming trip to Central Europe. Other people might have additional anxiety about things like using public transport, flying, airports (which – perhaps rather perversely for an autistic person – are places I actually love!), getting ill, getting lonely, and so on. Also, if I was going to the developing world I might add things to my list of worries like: creepy crawlies, getting bitten/infected/seriously ill, homesickness, culture shock, language barrier, perhaps greater risk of harassment or exposure to danger, and so on. 

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UPDATE!  (early May)

I actually decided not to go ahead with this trip after all. I think it was the right decision because since cancelling I’ve felt a huge amount of relief and little to no regret whatsoever. This doesn’t mean I’m put off travelling in the future. I’m still super passionate about seeing the world, and already have itchy feet to go certain places. Just that this particular trip, and perhaps it’s timing, wasn’t quite right for me. I’ve definitely learnt quite a lot about what I need in a trip to reduce my anxiety (e.g. travelling with someone else) and to enhance my motivation (I need to be really excited about the country or city) and will definitely keep this in mind when I make future plans.

Following on from this discussion around indecision and sources of travel anxiety, I was also going to discuss some practical coping strategies for dealing with anxiety during the actual fact of travelling. But this is a huge area, and there’s so much I have to say about it. I’ve therefore decided to leave it a while and return to this topic in a few months or so, perhaps just before the next time I plan to travel (and hopefully actually go through with it this time!)

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YouTube video on autism and language

“The language we use around autism matters”

I’ve started making YouTube videos of myself talking about autism – eek! (also see this video on “why talking is hard” – forthcoming)

The first video I’ve made is about autism and language. Here it is:

It is not about the ways in which autistic people are (presumed to be) “disordered” in language usage. Rather, it is about the ways in which a lot of nonautistic society is (truly) disordered in their language use around autism.

I wrote a script to help me remember what I wanted to say in the video. In some ways the script helps, in other ways it really does not (see above mentioned “why talking is hard” video for more on why this is). Since I went to the trouble of writing a script I thought I may as well include it here. In case some of what I said in the video isn’t that clear, you can refer to the script. What I’ve written below also ended up expanding on the original script, so there’s more detail for those who are interested. I think it’s also useful to have a list of the terms I mentioned, since there were a lot.

There are perhaps 3 principles that should guide our language use:

  1. What autistic people want (most important)

  2. What is empowering and helpful to autistic people (also important)

  3. What is scientifically accurate (least important, partly because this only reflects subjective value judgement anyway)

1

Language use around autism is a controversial issue. I’m not really sure why this is (well, actually it’s because of prejudice, ignorance and ableism…), because to me it is quite simple. The people who we are talking about – in this case autistic people – should have the first and last say in the language that is being used to describe them. It is the opinion of the autistic community that matters, nobody else’s. Of course, the autistic community is not a monolithic entity and every individual within it is going to have their opinion. But polls and anecdotal evidence consistently demonstrate that autistics generally prefer the more neutral, positive and progressive language, as opposed to a lot of the more traditional deficit-based terms that are still very much in circulation. For example, the majority of autistics state that they prefer identity-first language over person-first language. This means, I think, that wider society (namely, allistic people) should be using identity-first language in order to respect the preference of the autistic majority (whilst using person-first on a case by case basis with autistics who express this as their preference). Autistic people can use whatever language they please because it is their own neurology being talked about. You can refer to another post I wrote recently on this very topic.

2

It is the case that certain terms (leaving aside for a moment how scientifically “accurate” they are) are more positive and progressive and thus hold the potential to be more helpful and empowering to those they are describing. This should matter. It should be a strong reason for us to be opting for the more progressive language. There is no benefit to using deficit-model type thinking and language for autistic people. Some of us may simply not care or be affected by the language, which is fair enough. But a lot of autistics do feel offended and negatively impacted. Even if we don’t realise it, words and the attitudes they convey can plant (even quite subtle) thoughts and feelings within us about autistic people somehow being lesser or broken. It can and does lead to negative self-perception and self-esteem issues that have real life consequences for autistic people. And beyond the individual, negative language is only going to create and further perpetuate a negative atmosphere around autism in the general culture. All of this helps no-one except for those people with a vested interest in “curing” or other vanquishing autism out of existence, and those who are generally invested in trying to convince everyone how bad autism is. Framing autism in a negative way certainly helps with these things. And this is precisely the major reason why we should care about using more progressive language.

3

Some people (namely researchers) are going to argue that we need to use terms that are scientifically accurate and that autism is rightfully and truthfully classified as a “disorder” or as a “condition”, or whatever it may be. For example, Simon-Baron Cohen has done work around trying to prove that autism can not in fact be rightfully thought of as a “disorder”, and has used his scientific findings to back up an argument for using “condition” instead. This is a step in the right direction (although, personally, I still don’t like “condition”), but I think the whole thing is rather beyond the point. This is because the scientific terms we use – like all words – are socially constructed and essentially reflect what are only subjective value judgments. As a society we can and should be able to choose the terms we use. Science doesn’t decide for us. Humans have created language (language is not a naturally-occurring thing), and thus humans have the power to control and change language according to our own criteria.

With all this being said, below are some lists of terms and phrases that I – along with plenty of other autistics – think it would be good if everyone could stop using (especially nonautistics, who shouldn’t get to have a say in this). I’ve also listed a few terms that would be good to use as alternatives.

Terms to avoid using in relation to autism

  • Disorder / ASD

  • Condition / ASC

  • Syndrome

  • High and low functioning

  • Severe and mild

  • Impaired, triad of impairments

  • Deficit, dysfunction

  • Disease (even more concerning, I’ve also seen sickness and illness!)

  • Tragedy

  • Epidemic or wave

  • Burden

  • Problem

  • Challenging

  • Autism as a fate

  • Thief, prison, monster, being “trapped”

  • Suffer from

  • Afflicted by, touched by, affected by (though this latter one is being quite “sensitive” I’ll admit)

  • Autism as other, not human, alien

  • Robot or machine metaphors

  • Autism as a puzzle, or as somehow involving missing pieces or parts

  • Autism as being “in one’s own world”

Nice words to use instead  🙂

  • Autism – quite simple (and much shorter than many of the above!)

  • Autistic

  • Asperger’s (ideally I’d say drop the syndrome)

  • Different

  • Disabled

  • Neurodivergent / neurodivergence

  • Neurodifference

  • On the spectrum (although I think we could be a bit critical of the spectrum metaphor)

  • Aspie, autie (although some find these a bit “cutesy” and perhaps childish)

  • Neuroqueer

Phrases not to say to an autistic person

These tend to apply most often when you are meeting a new person who is autistic or if someone you already know is disclosing to you. The following phrases imply one or more of the following, that: a) autism is an inherently negative thing (which, unsurprisingly, is an inherently offensive thing to hear), b) that you really don’t understand autism (which is fair enough, but you can avoid exposing your lack of knowledge by taking time to listen and learn from the person instead!), and c) that you don’t think being autistic is a thing that really matters (to that person, to yourself, or to wider society).

  • I’m sorry

  • That must be so hard

  • You must be high-functioning?

  • You don’t look autistic!

  • You can’t be autistic!

  • You’re not that bad!

  • You can’t tell / You seem so normal

  • Have you tried xyz?

  • But you can do xyz…!

  • We’re all a bit autistic

  • We’re all different

  • Isn’t that over-diagnosed these days?

  • Don’t worry, it doesn’t matter, I treat everyone the same!

  • You’re not like x autistic person I know – especially not good if refering to a child

  • Where are you on the spectrum?

  • What’s your special talent?

  • Autism doesn’t define you

  • Why do you want to label yourself?

  • But you’re so nice/friendly/outgoing/empathetic!?

  • Equally, a non-response can be a bit off-putting…

A good alternative might be something along the lines of “wow, interesting, so what is that like for you?” Or perhaps asking more specific questions about that person’s experience.

Let me know in the comments if there’s anything I’ve missed, and I’ll add it to the list!

Language matters

This is a response post to invisible i’s YouTube video “I’m worried about The Autism Community”. However, these thoughts have been brewing within me for quite a while (hence why the post became rather long and rambly… I got a little carried away). I was always going to write a post along these lines, but watching Katy’s video just triggered me to do it right now.

(As a side note, I actually filmed a video myself a couple of weeks ago talking about the very topic of autism and the language we use around it (and doing exactly the sort of “policing” Katy seems to be against). But I’ve yet to edit or upload it. I’m new to this and currently battling with the whole upload process. I’m hoping it will be up soon).

Katy made a few points in her video, which I’ve listed below. I agree with some of what she said (at least partly), but mostly I disagree. This post will try to explain why.

Disclaimer: Even though I’m singling out Katy in this post, this debate obviously applies much more widely, and none of this is meant as a personal criticism or attack. (For the record, I think the invisible i channel is great, and Katy seems like an awesome person who clearly does a lot of valuable work for this community). Still, I disagree with much of what was said in this particular video, and it left me feeling pretty frustrated. This post is a way to vent my thoughts and feelings, and hopefully to encourage further debate with those who are interested in engaging. I genuinely like hearing what everyone’s opinions are – including if you disagree with me. One thing I agree with Katy about is the importance of being willing to have conversations, of not shutting them down, of not only tolerating but encouraging a wide variety of views (whilst, of course, being mindful of if and when a line is being crossed). With that said, here are my thoughts.

The main points in the invisible i video include:

  1. Calling out how some autistic people have a tendency to think or state that they are speaking “on behalf of the autistic community”, with the assumption that we all share similar views.

  2. That this is especially the case regarding language use, and Katy gives the classic example of an autistic person correcting an allistic person for using person-first language (pfl).

  3. That language, and specifically the need to police it, does not really matter.

  4. That there is an over focus on the language issue, something which is off-putting to (namely allistic?) people and serving to divert conversations from the original purpose/actual content of the discussion.

My response to each of these points (roughly following 1-4):

1.

I agree that no one autistic person or group of autistic people can or should claim to speak for all autistics. This isn’t right. There can be real danger in representing the community as if it were one monolithic homogeneous entity where we all think, feel and act the same, whether it be about autism or anything else. I therefore agree we should avoid using phrases that are too all-encompassing and generalising, such as “on behalf of the autistic community, xyz”.

However, I do feel that the sentiment and purpose underlying such a phrase are valuable. Autistic people should be educating others on things that are important to the community as a whole. We should also be wary about veering towards the other extreme in terms of thinking that there can be no such thing as an autistic community (because we are all so different). Of course there is such a thing as an autistic community. It is also the case that there are many needs, preferences, values and ideals which are held in common by a lot of people in this community.

It is the case that the majority of autistic people say they prefer identity-first language (ifl). It is okay and right for us to let the wider world know about this fact. Using phrases such as “most autistic people prefer…”, “the majority of the community prefer…”, or “there are a lot of us who prefer..” would be good alternatives to the more blanket statement mentioned above. In fact, I think making the preferences of the majority of the community more widely known, understood and respected is a really important thing to be aiming for.

Some are going to say that this risks erasing those whose views don’t fall in line with the majority. This is true to an extent. But, ideally, people should be aware that preferences will differ on an individual basis and remain open to and respectful of this, all whilst acknowledging that there is a majority preference. This majority preference should, I think, become the majority way of talking about autism. This way we are offending the least amount of autistic people (and it is only autistic people we should be concerned about offending in this debate, not allistics – we are talking about how to describe autistic people after all). Also, those who say they have no preference regarding language use (like Katy), presumably aren’t offended by ifl, so there’s no loss in using it in these contexts. I understand why these people may be offended by a blanket statement which excludes their views, and this is why using statements like “most autistic people prefer…” is the most useful approach.

I’d like to think we can have a majority preference to represent the community, whilst still respecting the diversity and divergence of opinions found within.

A slight tangent: There seems to be a trend at the moment whereby people are feeling compelled to preface a lot of what they say about autism or their own experience with something along the lines of “I can’t speak for every autistic person”, “this is just my own experience”, or “not every autistic person feels like this”. I’ve done this myself, and I presume it stems from a worry of being called out for being seen as trying to represent the entire autistic community or the whole experience of autism. Something about these statements has felt slightly off to me for a while, but I struggled to pinpoint exactly what or why (on the face of it, it seems like a fair enough statement to make). Then, while reading the wonderful “Radical Neurodivergence Speaking” blog, I came across a criticism of this very tendency which shed some light on why it feels a bit wrong. In a post about “Bad Autistics” making good activists, Neurodivergent K writes:

“It’s not difficult to figure out how to be a “good” autistic. Just preface everything you say with “this only applies to me, of course”… [On the other hand] We [“bad autistics”] don’t apologetically state our experiences, all wrapped in disclaimers that no other freak like us will necessarily experience the same thing the way we did.”

I think this is why it feels wrong to me: Quite simply, nonautistic people do not feel the need to preface statements about their own experiences in this way. Why is this? It’s likely because we (rightly) take forgranted that every (nonautistic) person is an individual and that (nonautistic) society is diverse as hell. Yet, somehow this doesn’t seem to quite apply when it comes to autism. Why else would we feel a pressure to keep stating/reminding people that we are in fact individuals with our own experiences, that these experiences do not necessarily apply to others, and that our community is not made up of a bunch of undifferentiated clones? Basically, I agree with the sentiment behind these sort of preficing statements – that we are all different, that we can ultimately only speak for ourselves* – but the fact these statements are not simply being taken forgranted, as they are for most of society, I think hints at some underlying ableism and prejudice.

(*without underplaying the value in how experiences can often be applied for widely.)

Anyway, I’ve gone off on a tangent here. Back to the main points…

2.

Focusing now on the identity-first vs. person-first language debate a bit more closely… To me, it is quite simple. Most autistic people prefer ifl. We should respect the needs of the majority. This is not the same as ignoring the fact that there are minority views. But I think that majority should rule. It does in most contexts, often because this is the only way things can move forward (e.g. as with elections). Minority opinions, should be just that: minority. Not ignored, erased or vindicated, but less frequently encountered, in proportion to the frequency with which they are held by members of the community. There are good reasons why there is a majority perspective and these deserve to be respected and reflected in the language use that predominates in and around the autism community.

I do not have an issue with autistic people who prefer pfl or who have no preference regarding language. My own opinions are that a) ifl is the more progressive option, and b) language does matter. But this does not mean I do not tolerate, understand or respect those who think otherwise.

However, something which I must admit does irk me is when autistic people state they prefer pfl or that they have no preference, when they have not necessarily gone out of their way to read up on the debate and the background of some of these terms. I don’t think it is a great situation for people to be stating a preference or non-preference in the context of a lack of education or critical thought on the issue (not to say that everyone or even most do this). Ideally, people should read around and think critically about various terms before coming to a decision. I say this because it still, to this day, genuinely surprises me that an autistic person can not only accept pfl, but actively embrace it. I didn’t decide that I prefer ifl on a whim, or simply because lots of other autistics seem to. I read a lot about the debate from a wide variety of sources and this led me to the inescapable conclusion that ifl is progressive whilst pfl, frankly, is veering into rather ableist territory. I’m not going to go into the debate itself here (this post is getting long enough as it is), but for anyone who is interested and would like to know more, comment or message me, and I can point you to a few useful resources). Overall, I think that if more autistic people were aware and well-informed about the ins and outs of the debate, then more would side with ifl. This may sound a bit arrogant, but I genuinely think that it would be the case.

I’m not blaming people if they lack this deeper background knowledge. It is all too easy to be unaware that this information even exists. If I’m blaming anyone/thing, then it is the fact that a large portion of the autism community is dominated by allistic-led organisations that do not necessarily have our best interests at heart, or that serve to divert attention and resources away from the progressive – and I would argue most valuable – part of the autism community (i.e. the autistic community, and especially the work of autistic (self-)advocates). It is this side of things that I’m so grateful to have discovered relatively early on in my own post-diagnostic explorations, and where I learned about the importance of language, and the problems associated with pfl, and many other terms besides. I believe it is really, really important that people – especially autistics themselves – are aware of why certain terms could be considered problematic, about the history of these terms, and about the power/political value of adopting alternative language. People should make up their own minds, yes. But ideally this should be done in the context of educating yourself, reading up on a variety of perspectives, and thinking critically about everything, before coming to a decision. Above all, it should mean avoiding unthinkingly accepting the status quo or the language of those around you (especially for an autistic who may be surrounded by allistics who are accustomed to and even insist upon using pfl).

What I have a big problem with is the way some allistics use language to describe autism/autistic people. Focusing specifically on the ifl/pfl debate, I do not think it is okay for allistics to use pfl. This is not the preference of the majority of the autistic community, and this should be respected. In no way should the preferences of the autism community (inclusive of nonautistic parents, professionals and researchers involved with autism) hold sway over that of the majority of the autistic community. Other people who are not part of a minority group do not get to have a say in how that group self-identifies. It’s as simple as that. Therefore, the worst thing possible for an allistic person to do regarding this issue is to defend the use of pfl, especially when they are educated about the debate and aware that many autistics have a problem with it. What is okay, of course, is if an allistic person uses pfl innocently. This applies to those who are new to the community especially, those who are simply not aware of the difference nor informed about why this is an important issue to many. These people need to be called out (nicely) and preferably informed about the whys (e.g. through directing them to a good article on the topic). It is only when an allistic person knowingly goes against the autistic majority, actively backlashing against ifl and defending pfl, that there is a problem and where niceness can rightfully take a backseat. It is OK to be wrong (in the eyes of the majority) out of ignorance, it is not OK to be wrong in full knowledge of what you are doing. And why are you wrong in the first place? Quite simply: It is not your neurology we are talking about, so you can kindly stop inputting into the debate.

(Note: I believe that the only time allistics should use pfl is in relation to specific autistic individuals that have stated this as their preference. The autistic person holds sway in this debate in one-to-one interactions (hence either pfl or ifl can be used). The autistic community should hold sway over broader interactions and wider society (hence only ifl should be used).

As I’ve said previously, I accept and understand that some people have no particular preference about language. However, I personally disagree with this perspective. Here is why:

 –  It is failing to acknowledge the problems with pfl.

 –  It is failing to acknowledge that ifl is a progressive alternative.

(I know some autistics disagree with both of the above, but I hope this is disagreement coming from an informed position.)

 –  It is failing to acknowledge that language is important in the world generally, and that in the autism community it is implicated in a whole lot of ableism. In fact, language is perhaps the main way in which ableism is reflected and propagated.

I haven’t discussed the third point yet, so I’ll move onto it now.

3.

In her video, Katy states that she isn’t the sort of person to filter or police her own language around autism. She also implies that this a good thing. First, to be super literal about it, I would respond that we all need to mind our language to some extent, otherwise we’d constantly risk offending others (plus there are some terms that are outright harmful, that require avoiding). So the notion of not filtering or policing language as somehow being an inherently good thing, I don’t think is necessarily right. “I don’t police my language” is not a reason to not (want to) police language. And by not policing your own language what you are really saying is that you either don’t know or care about the meanings that various terms embody (meanings which sometimes differ for different people), and essentially that you don’t think (some, many or all of) the words we use in communication hold much importance. Clearly, we cannot say that words do not matter, that they do not convey meaning, that they do not have an impact. And some words tend to offend a lot of people – people who have a right not to be offended (especially when the words in question have everything to do with them, and nothing to do with the allistic people using them). The offence being caused (which has real life implications I should add) should override the “free speech” of allistics who want to use these words.

Katy makes her ambivalence pretty explicit in the video, stating she “doesn’t care” (about the terms used around autism, and more specifically, I think, about the pfl/ifl debate). I would ask, “Well, why not?”. “Not caring” isn’t a good enough reason to back up a position on a subject. Actually, the fact of “not caring” is a pretty good reason to discredit a person’s position in a debate entirely. People should care enough to read up on both sides of the debate and to have an opinion. If they truly don’t care and don’t have an opinion then this is fine of course, but if this is the case it’s probably best to stop inputting into the debate. If they decide neither side is right or wrong or credible they should explain why, not simply state that they “don’t care”. Katy states the ifl/pfl (and perhaps more language-focused debates) simply aren’t important to her, and that she “can’t flip a switch” to suddenly make it feel important. My response would be that there is no magic involved in this. Starting to care about something usually involves taking an active approach, namely in terms of seeking out materials which lay out the debate and explain why it is important.

Language is important. We should care about it. Without language, there would be no debate at all (let alone a debate about a debate!). Without caring about language, there would be a free-for-all, a lot of unplesantness, offences and upset (even more than there are now). The unpleasantness, offence and upset that we have now is largely the result of autistic people starting to fight back and insist that they get their voices heard on issues. This is only a good thing (the fighting back, not the unpleasantness) and it needs to keep happening until we have inclusion on our own terms. Language matters because it reflects and shapes how we think about ourselves and others and how we act in the world. Language in the autism community matters because it often reflects or reinforces ableist attitudes and practices, or purposefully attempts to critique and depart from such ableism.

4.

In the video, Katy also raises a worry that the whole language issue can be off-putting to some people (I assume these people are mainly allistics, especially newcomers, or at least those being “attacked”), and that it is making them reluctant, even scared to engage in the community as a result. As a side note, I genuinely question the accusation that “harm” that is being done to these allistic people* (see further below for more). I agree with Katy’s comment that we should not be using this debate as a reason to shut down conversations (unless, I think, the person is outright defending pfl in full knowledge of what the autistic majority think about it, something which says a lot about their likely underlying attitudes). As Katy says, a lot of the time it is not meant maliciously (rather it results merely from a lack of understanding), hence there is no reason to respond maliciously. We shouldn’t shut down conversations about the actual content because of potential language issues. But nor should we shut down the conversation about language. It is an important conversation to have. When it comes to specific instances, autistics can point out the language issue if they want and then proceed to have a conversation about the actual content. If the person being called out is put off by having been corrected, and doesn’t want to continue the conversation purely because of this, then this is their problem, nobody else’s (and frankly a bit touchy considering it’s not even about their own neurotype).

(*Note, autistic people should not be called out for their language use, because it’s their neurology and so their decision.)

To conclude, I think my main frustration with this video can be summed up as follows. The principle topic of Katy’s video is around raising “worry” and even criticism at the way some autistic people call out problematic language use (as defined by the majority of the community). But, overall, I think this is a massive red herring when viewed in the wider context of what is going on in and around the community. The real issue is the distasteful and damaging language that most of society still uses around autism and autistic people, not with the way that some autistic people are trying to counter these usages. Hence, I think raising the issue of autistic “backlash” as a major worry for the community, is a bit backwards. (Of course, it is a worry for those people who are using problematic language, or at least we should want it to be, this is the precise purpose of the “backlash”.)

Frankly, I think it’s a bit rich to paint allistics as the victims in all of this (e.g. Katy’s comment about feeling bad for them and wanting to give them a hug!), especially in the context of what many autistic people have to deal with hearing day in day out and, more generally, given the ableism that is rife in society (including in this particular ifl/pfl debate). Katy talks about how a lot of businesses who are looking to make themselves “autism-friendly” worry about doing so and about getting involved in the community for fear of backlash at “getting it wrong”. If they are worried about backlash, there is one easy solution: Ask us what we think, listen to us, respect what the majority of us have to say. If we say using ifl is the preference of the majority in the community, use ifl in your business, and the problem is solved. It’s rather simple (that is unless you think the opinions of nonautistic “autism parents” or “autism experts” are more important than ours – in which case we have a problem). Just stop using ableist terms. If you are not sure what is ableist, then ask us. If you were “trying your best, but getting it wrong”, then you likely didn’t ask or pay respect to what we have to say. Don’t take it personally when we state our preferences or correct you. Just listen to what we say and try to act on it next time.

I do not think that the main issue in our community is that allistics are “scared” of us/the autistic community (more so the exact opposite, if anything). Anyway, I think NTs can hack it. What we are “doing” to them is nothing compared to what they are doing to us*. Calling out ableism is not a sin. Our “backlash” is not nearly in proportion to the amount of ableism and misinformation that there still is around autism in society. Regarding the comment that some autistics can be very “guarded” about language, or just generally: I think being “guarded” is a relatively justifiable way to be, given the current context. Being guarded doesn’t mean being nasty, it means being alert to ableist or potentially ableist language, attitudes, commentary and actions. We need people who are willing to fulfill this role if we want to make progress.

(*Not to be too “us” vs. “them”: Only what some of them are doing)

I agree that it is important to be respectful, and where possible nice as well. But, at the end of the day, the niceness or not of the words or the debate is not the most important factor. Delivery, tone, undercurrents, and so on, are important – especially when communicating with allistics – but they are not the most important thing. Content should be the most important thing. If the delivery is a bit blunt and not quite sugar-coated to your liking, then so be it (especially given that this tends to be an inherent characteristic of many autistics’ communication style, and hence something that could do with being understood and accepted). Autistics’ being purposefully disrespectful and malicious is another thing, but this is limited to a very small minority (smaller still, I think, than the minority of allistics who are purposefully inciting offence). The vast majority of autistics calling out problematic language are just trying to be helpful, even if it doesn’t seem that way to the recipients. It is not a personal criticism if you are asked to stop using pfl. It is a helpful, well-intentioned gesture aimed at pointing you in the right direction, one that will help smooth your future interactions with the autistic community.

Katy emphasises that we should be working towards inclusion. I totally agree. But we should want inclusion on our own terms. Inclusion does not include being frequently offended, triggered, frustrated or even just a little but bothered by the language that is routinely being used to describe you and people like you. True inclusion means not letting allistics get away with shaping the terms of the debate, and not letting the prejudices of outsiders dictate what is said and not said. It means choosing these things for ourselves. We shouldn’t have to compromise. We shouldn’t even have to ask. It is our community. It is about us. It is our debate.

Introducing: “The Autism Sense Project”

New name, new aim!

I’ve recently decided that I want to work towards creating two books about autism, rather than just one. The single book I have been working on for the past year and a bit has become unmanageably large, meaning that a) it will be some time before it’s in any state to be released to the world, and b) no publisher is going to get on board with it anyway (although I may well decide to self-publish).

I also came to realise that what I’m trying to do actually splits quite well into two book projects, as I explain below.

The first part of my project was – and still is – to contribute to a better understanding of autism (in terms of the scientific theories we have). The second part, meanwhile, was/still is focused on autism understanding (or rather, misunderstanding), looking at how autism/autistics are situated (both discursively and materially) in society, and the ways in which we may resist these placements. Check out the first ever post in this blog for more details on these two aspects. Rather than trying to combine these two rather large and lofty aims under one banner, I am going to split the content into two, as follows:

The first book has a working title, “Making Sense of Autism”. There are two meanings to this title. The first is the obvious one and has to do with working towards a better understanding of autism (i.e. what makes sense about autism). The second is a more hidden meaning, but one that is core to the book and central to how I think this understanding can and needs to be reached, namely through focusing on the sensory perceptual aspect of autism. In other words, the key message of the book is that understanding “sensory” is key to understanding autism in general.

The second book is focused on the autism (mis)understanding side of things. I’m less sure about the title for this one, but was thinking something along the lines of “Autstanding” (again, see the first post in this blog for more on this name). Obviously, this is a merging of autism and understanding, something which needs to be achieved within society. But “aut” comes from the Greek “autos” meaning self, and so “Autstanding” can also be read as self-understanding. So, again, we have two potential meanings, one referring to understanding at the societal level, the other at the individual level. And this is precisely what the book seeks to encompass. It is going to look at issues of (mis)understanding, acceptance and ableism at the micro-scale (among autistics themselves, as well as nonautistics), as well as at the macro-scale, and at the ways the two intersect and reinforce one another. “Austanding” is on the short side and probably requires clarification in the form of a subtitle. Again, I’m not sure about this at the moment, but my first idea was something along the lines of “Autism understanding in an Allistic world” or “Autistic selves in Allistic society” – but these can be improved on with a bit more thought.

Finally, I need a new name for this blog – and for my online platform more generally. I’ve come up with “Autism Sense”. I think it’s fairly catchy and rolls off the tongue quite nicely. It encompasses the double meaning (“what makes sense about autism” or “what is sensible with regards to autism”, whilst hopefully getting across that the sensory domain is very important in autism). The double meaning is clear to me, and hopefully it will be to others as well*. I’ve also decided to throw in “the” and “project”, making it “The Autism Sense Project” (to try to encompass the fact it’s an umbrella for multiple things – 2 books, a blog, YouTube videos, artwork), but I’ll probably use the shorter “Autism Sense” as well.

I’d really appreciate any feedback anybody might have on this name (or anything else I’ve written). I can have a tendency to over-think these things and perhaps trying to be too clever with names so that the meaning I want to get across ends up not being so apparent to outsiders. Anyway, for now at least, here’s to “The Autism Sense Project”. Wish me luck!

Autism discovery: 2 years on

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In this post I discuss some of what I’ve learnt about myself, my life, autism and various other things, along with some of the changes I’ve tried to make (or, alternatively, not make) since my diagnosis in summer 2016. The post is entitled “2 years on”, but I actually wrote most of this in Spring 2018, then subsequently “forgot” (i.e. procrastinated) about it for a while before updating and editing it in December 2018. So technically it is an account of my thoughts somewhere between 1.5 and 2.5 years since diagnosis, which averages out at 2 years anyway.

Before getting into the details of my own life, I want to spend a bit of time discussing the issue of “change” following an autism diagnosis in more general terms. (I’ve also touched on this very topic in anther post if you’re interested in reading more.)

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Change post-diagnosis

One huge issue that tends to arise post-diagnosis is the question of change. Specifically, whether or how much you feel you need to change, want to change, should change and can change, in which ways and for what reasons. Where do you draw the line between what you accept and embrace about yourself and what you might want to change? Should you expect for expectations to be adjusted post-diagnosis, and if so in what direction or under whose influence? Those who have just received a diagnosis are likely to have been experiencing recent difficulties in their life, which might make the need for change especially strong. The sudden influx of new information and understanding that an autism diagnosis brings, can trigger a new level of self-awareness and motivation which typically makes post-diagnosis a time that holds a lot of potential for change.

But this doesn’t mean that making changes is easy, especially in the context of autism. How can you change (especially if you face roadblocks of varying kinds)? Is change even the right option for you? Or is change inevitable, something that is always going to happen to us no matter how much we might resist it? Perhaps the key lies with trying to gain better control over changes that are going to happen anyway. Which changes are the right changes? How are you supposed to know what “right” even means? We may have difficulty identifying our own needs, or even preferences, or distinguishing between fears that we have for very good reason (because something really isn’t a good fit for us) and fears that are holding us back from things we really want and that could be overcome for the better. What if we feel pressured by expectations coming in from the outside, or if we feel conflicted by our own defences? How are we supposed to know how much change we can deal with (especially if this seems to fluctuate over time depending on our energy and sensitivity levels)?

A lot of tricky questions, no doubt. But for some things, it’s almost a no-brainer. For instance, with new knowledge about sensory issues it makes sense to take a look at your daily life and environment and to try to minimise the impact of as many triggers as possible. This might not always be as easy as it sounds, but these are still comparatively small changes – even if they go a long way towards improving a person’s wellbeing (which is precisely what makes them no-brainers). These sorts of changes centre around adjusting the environment and making adaptations around the person to help make life easier for them. The trickier changes, perhaps, both from an ethical and practical stand-point, are those centred around changing the person themselves. Some autistic traits can be problematic for the person concerned or for those around them. But there can also be a danger that comes into play if improving or changing yourself starts to fit a bit too comfortably with notions of becoming “less autistic” (which ultimately might mean “less you”). Some autistic traits may be very hard, even impossible, to change and may require accepting instead. Indeed, there are also many neutral and positive traits that would definitely benefit from acceptance at the very least.

I’ve written quite a lot elsewhere (e.g. the previous blog post, also my forthcoming book) about the wider theoretical framework for considering change, especially the ethical debate around how much we should expect the individual to change versus focusing on societal accommodations (as essentially encompassed in the medical versus social models of disability). In this post, I’m going to focus on the more practical and personal side of things. I’ll list some of the main changes that have occurred for me personally in the months since receiving a diagnosis, including those that were deliberately chosen and adopted, as well as changes that naturally happened to me, whether for good or bad.

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What’s changed in my life 2 years on?

In a way, a lot has changed since my diagnosis. In other ways, nothing much has really changed at all. Perhaps this is because there are different sorts of changes, and some forms can take a while to makes themselves apparent – especially in the context of something like an autism diagnosis which can take a lot of time to process. Receiving an autism diagnosis was huge, one of the best – and certainly one of the biggest things – to have ever happened to me. I’ve discussed previously how I was initially impacted – from the first few hours and days after, up until about a year later (focusing especially on the emotional aspect). So check out this post (link) if you’re more interested in this side of things. Below, I’m discussing more concrete changes that have happened in my second year since being diagnosed. Have things changed now that I’m further down the line? And how might I expect them to keep on changing in future?

Here is a list of the changes – big and small – that have occurred since my autism diagnosis (whether I welcomed them or not). Some were things I actively pursued to improve my self, my environment or relationships with other people (although I haven’t written much on the latter – I think this might require a separate post!) Others were unforeseen or problematic changes that, as I’ve said, happened to me.

Feelings about autism and being autistic

(Note, for some discussion on how I’ve progressed in my actual knowledge about autism, the autism world and the autistic community, refer to this post).

Feelings about my diagnosis

I feel that some of the negative emotions I had post-diagnosis (or that I think I had – see alexithymia below) – sadness, regret, frustration, etc. – have dissipated quite a lot. However, it is hard to be sure about these things and I do still experience largely inexplicable and sometimes unidentifiable fluctuations in my feelings. I know that I feel somehow troubled or overwhelmed (and I know it is in relation to autism and being diagnosed – because it happens only after watching, reading or talking about certain autism-related things) – but I don’t know exactly how or why I feel the way I do. As I mentioned, this is alexithymia in action. Also, interestingly, I sometimes think it might be the alexithymia causing me to feel overwhelmed more than the actual triggering emotion itself.

Update December 2018: I would now say that I have mainly only positive emotions attached to autism/my diagnosis/being autistic… and even that my approach is perhaps what some may say is “too positive” (though I don’t think this is really a thing). (A lot of this, of course, is due to the fact I have a very intense interest in autism, and it’s hard not to feel very positive about one’s “special” interests.) When I look back on the early post-diagnostic days, I think I was conducting somewhat of an intellectual operation on my own emotions. I was somewhat in a mode of telling myself that I should feel positive, that I want to feel positive, that it is bad, pointless and counterproductive to feel negative. Whilst I was definitely feeling more positive than negative about autism and my own diagnosis, I think a significant part of this was at an intellectual level (hence why I thought and wrote at one point that I feel as though I am “lying” to myself about feeling positive). Now, however, I cannot mistake the fact that I feel overwhelming positive, proud and passionate about autism and being autistic. It is a real feeling, one that I actually feel, and very strongly, independent of any intellectual thought. And it seems to keep growing with time. I don’t even need to think about it or check in with myself, I just feel it. And the happy feeling always seems to be there whirring around in the background, even if I’m not consciously focusing on it. Needless to say, this is great and I love it. It may indicate that the intellectual approach I took earlier actually worked, or else it was just a natural progression that was always going to happen anyway.

My perspective on other people’s perspective

In the past couple of years I’ve increasingly come to realise how much misinformation and prejudice there is out there about autism. This certainly isn’t the fault of autistic people, or even the “perpetrators” themselves. It’s very much a systemic thing (ableism) which is precisely what makes it so pernicious, powerful, often invisible and hard to fight against.

My feelings about how others feel about autism have fluctuated quite a bit. But, overall, I have progressed to feeling a lot more sensitive to seeing others propagate misinformation and negativity. The evolution in my thinking has been most obviously reflected in my language use, including in quite subtle ways (e.g. in editing this article 9 months after first writing it, I find myself disliking and deleting all the instances of “affected” (by autism) that I had seemingly used without awareness or concern at the time – it just feels too medicalised and negative). At first, I had to engage in some self-policing in order to stop myself repeating certain words that I disliked but that I was hearing or seeing on a regular basis. Now, it’s almost always natural for me to avoid these words and phrases and their underlying sentiments. What I do find a bit hard, though, is seeing other autistic people using “pathology paradigm” language. It makes me feel a bit irritated and sad, even though I know they have every right to use the whatever terms they please. This doesn’t stop me thinking, though, that this would and should be changed if there was more education and discussion around language. I think it’s important, and something we shouldn’t dismiss as minor or as all about individual choice (our language choices have wider societal implications).

Perhaps this increased sensitivity isn’t really surprising considering some of the following factors. I’ve learnt more about what autism really is and what it is really like – in all its diversity – and this inevitably takes me further from mainstream accounts. I’ve learnt more about ableism, about disability as a social construct and about how wrongly disabled people in general have been (and still are being) treated in this world. I’ve started venturing into the self-advocacy scene which is populated with so many interesting and progressive-minded people. In spending so much time reading about autism and the experience of being autistic, I inevitably receive a lot of repeated exposure to language, ideas and practices that are irritating to hear about, erroneous, hostile and sometimes downright dangerous. The repetition starts to grate after a while. And no, I haven’t desensitised to it, nor do I think this would be a good thing. I am more sensitive, more irritated and more angry about the way autism is commonly (mis)represented and responded to by many autism “experts”, some parents and by society at large. But I think this is a good thing. We need to be sensitive and angry about these things, otherwise nothing is going to change.

Self-awareness about my autistic self

In the weeks following my diagnosis, I was still in a place of some degree of doubt, confusion and lack of awareness about my autistic ways. Also, and something I find quite problematic now, I felt concerned with where exactly I was on the “spectrum” (now a term I’m not overly keen on, let alone with the notion of wanting to “fix” myself to one place on it) and with trying to compare myself to other autistic people that I encountered or heard about.

Now, having learnt more about myself through the lens of autism, and about autism more generally, I’ve obviously gained a far more accurate self-knowledge (whilst avoiding falling into the trap of asking “how autistic am I?” – “how am I autistic?” is perhaps a far more useful question). This includes insights into my life at various points in the past and about some of the changes I’ve been experiencing more recently (see the “more autistic” section below). Overall, though, I would emphasise that it can still be hard to get a clear perspective on myself at times – how I am autistic, how and why various traits can be subject to change over time or across contexts, and so on. It can also be tempting to try to compare and contrast yourself with NTs or other autistics. This can be useful to a degree, especially if you are making meaningful comparisons, but in general it isn’t really the healthiest. I’d recommend just trying to focus on understanding yourself (although others can certainly help with this – especially other autistics*) and on comparing yourself only against a previous version of yourself (if this is helpful).

*I came across a great quote by Elizabeth Bartmess, an autistic self-advocate, recently that speaks to this point – “let’s keep exploding with collective autistic self-knowledge”.

Self-consciousness about the autism label

The more time has gone on the more comfortable I’ve become with the thought and knowledge that I am autistic, and more precisely with the knowledge that others know I am autistic. I was never uncomfortable per se (and certainly not in terms of how I viewed myself), but I was quite self-conscious about the identity in the eyes of others, partly because of the magnitude and new-ness of it all, and partly because I was very sensitive to how I knew most people would interpret an autism diagnosis – as something that is essentially negative. Initially, it felt weird knowing that those around me were seeing me through this new lens. I felt slightly vulnerable talking about autism, and even just using the word.

All this has changed now. It has changed hugely. Partly because autism is a special interest (so how could I not want to talk about it), but also because the mere passage of time has served to make it less of a foreign-feeling thing in my life. Knowing I am autistic now feels comforting, it feels like home and it feels like me. In the earlier days, I also felt some degree of self-consciousness, even paranoia about whether and how I “appear autistic” to other people. I try to care a lot less about this now. I actually find comfort and pleasure in noticing when I do “act” or “appear” autistically in some way, and in noticing this in other autistics too.

Update December 2018: For the past few months I’ve been walking around with no less than three autistic pride/advocacy badges pinned to by backpack (with one being rather large and noticeable). Initially, I felt pretty self-conscious out in public, and would even take measures to cover them up at some points (rendering the whole exercise pointless). But, in large part, this is precisely why I wanted to wear them out in public. I wanted to face and overcome these feelings, feelings that I didn’t want, that weren’t really mine, and that shouldn’t be there – feelings of self-consciousness and even shame about being autistic. And it’s truly amazing how quickly desensitisation kicks in – now, most of the time, I tend to forget they are there.

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Social life

Meeting others autistics

After being diagnosed, it was a few months before I took steps to meet other autistics. This took the form of an opportunity I was lucky to be presented with: there happened to be a dedicated “autism centre” for autistic adults in my city which runs various social groups and drop-ins. I felt a need to take a more active approach to socialising with people other than my immediate family, and meeting other autistic people seemed like an obvious place for me to start. This was very scary at first, and it can still make me anxious nowadays (although looking back now, the decrease in my anxiety over time has been quite huge).

A big change that has occurred since being diagnosed relates to my level of social motivation. For perhaps the first time in my life I actually feel positive and excited about socialising with people (outside of the few people I am close to). I still get anxious, but this has lessened considerably as I’ve become increasingly familiar with the environment and the people there. I would actually characterise the anxiety more in terms of a positive adrenaline (as opposed to involving emotions of fear and dread). I have a strong motivation to want to connect with others despite the difficulties and related social anxiety (i.e. my body gets into a heightened state despite the fact I want to be there talking with people).

I feel I’ve done okay in terms of getting involved and talking a bit about autism and things in general with some of the others in the group. I’ve certainly made acquaintances, and am perhaps progressing to friendship with some people. I’ve surprised myself in this regard and feel I’ve become a lot more practised and comfortable in verbal self-expression and simply being and (somewhat) relaxing around others I don’t know well. At the very least, I feel less self-conscious and more self-accepting about various autisticky things I might do. Of course, it should be easy in an accepting environment full of autistic people, and venturing into the non-autistic social world (especially if people are unaware of your diagnosis) does seem rather more threatening.

Things haven’t always been smooth and easy in this particular autism social group. I’ve often felt some frustration – either because the environment hasn’t been right for me to get properly involved (too much blah blah or distracting background noise), or because of a lack of people (or lack of the “right” sorts of people that I’m personally able to connect with). So in some ways my (overly high?) expectations to make meaningful connections, even close friends, haven’t been met yet… I still have some hope, but need to balance this with the realisation I will likely need to try other places as well.

It has been a very valuable thing to be around other autistic people and I’ve felt some connection and sense of belonging with a handful of people I’ve met, even if these were just short-term encounters. Beforehand, “autistic people” had felt like a bit of an unknown entity to me. Not having met any others, it was easy to have stereotypes and a lack of realness in my conceptualisations. Now, I have a better feel for what we are like, how we are different in different ways, the similarities we share, how we are just like anyone else, and what makes us different to the majority people.

Putting myself out there socially has sometimes been challenging because it highlights the difficulties I have, sometimes quite starkly. Having kept to myself a lot in the past has perhaps contributed to me not necessarily having a very clear focus on various social difficulties purely through a lack of regularly exposing myself to challenging social situations (obviously I knew, but I wasn’t constantly in situations that reminded of the fact, and when I was perhaps I was in denial or simply lacked the understanding to comprehend what could be going on with me). Now, with the autism knowledge, it’s been interesting to observe and analyse these issues through the lens of a new set of explanations (e.g. auditory processing issues and resulting meaning deafness), providing me with an all-important understanding about why things can be hard. I’ve found it especially interesting how much easier or harder socialising can be made according to the environment and the type of people. So, in a way, I’ve been realising just how very situation-dependent many of my social “issues” are. At the same time, though, the autism knowledge highlights just how pervasive and probably intrinsic certain aspects can be as well.

Trying to “improve” my “social skills”?

This is something that was at the very forefront of my mind following my diagnosis (something along the lines of, “wow, I’m autistic.. do I need to “fix” things about myself, and how can I do it?”). I was thinking about taking measures to actively learn rules around small talk, non-verbal communication, even considering whether I could start being more expressive and lively with my face, intonation, gestures, etc (i.e. making more effort to “pass” or “mask”).

The more time has gone on, the more this idea has seemed kind of ludicrous. First, I think it would be very hard – I have a particular difficulty with acting in any way other than how I am/feel naturally (although many autistics, especially females, do find themselves naturally mimicking those around them or actively teach themselves to do so – I haven’t done this much for whatever reason, at least not at a conscious level). Even if I could learn, I’m not sure that this would be the healthiest approach. Where would it lead? To me investing a ton of energy in acting surface level “social skills”, and perhaps with a loss of meaning and feeling as a result, not to mention the after-effects and long-term impact of masking. Social interaction is already draining enough without this.

*Update December 2018: It definitely isn’t the right approach – not just because it it hard, prone to failure and can be personally damaging over the long-term, but also for the ethical reasons (“why should we have to?”, “how can we make society more accepting of autism if we can’t feel free to be ourselves?” etc.)

Nowadays, I definitely fall more within the camp of trying to learn to be around others whilst remaining as natural as possible, with the end goal being to feel good, rather than appear good (and chances are anyway that if you genuinely feel “good”, you will appear “good” and so will the other person as a result). Of course, being able to feel good is a challenge in itself in many situations. But it’s perhaps a more manageable and ultimately healthier approach then investing heavily in mimicking NT non-verbal communication. This might entail learning to be more myself, to relax and feel comfortable, to let go of scripts and “rules” that are artificial or don’t feel good, to be honest and real, and to embrace communicating autistically if this is what helps. I’ve made some progress along these lines. I feel more free to be myself, like I can be more open about my thoughts, feelings, likes, dislikes, things I find annoying or difficult, and like I can avert my eyes more, stim and move around more, take more time before responding and so on. This is clearly much easier in an autistic-autistic environment, but at least it’s a good place to start (and, of course, to perhaps stay!).

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Emotions and alexithymia

I have definitely experienced quite a change in terms of my emotional life, namely in that my emotions have been at the forefront of my experience a lot more, sometimes to the point of overwhelm and feeling unable to do anything. Alongside the intensity, it is also hard to understand what I am feeling and why. Discovering the concept of alexithymia has helped me understand this and I’ve come to the realisation it probably affects me quite a lot, and in two main ways. It affects my baseline state which is a state of neutrality and a state of not being that bothered by emotions. But when I do have emotions they tend to be intense and hard to understand (and sometimes I think it’s the very fact they are hard to understand that makes it uncomfortable and intense in the first place). When this happens, I feel torn between wanting to purge these feelings from myself and wanting to inhabit them as fully as possible in order to try to understand them and also to revel in the fact that I am feeling so much.

I’ve never felt more emotional at any other point in my life than I do now. I would characterise my mood and emotions as being quite neutral the vast majority of time, and this was certainly the case for most of my life pre-diagnosis. Post-diagnosis, my emotions have been triggered quite intensely in ways they’ve never really have before. Perhaps I was more alexithymic (and/or perhaps partially shutdown in certain situations) when I was younger, and now I’m becoming better at feeling in touch with myself and my own emotions. Whilst a lot of this could simply be down to age and maturity, I’m sure that the autism discovery has a lot to account for this as well, and in two main ways. First, the discovery itself is a source of a lot of emotions. Second, knowing about my autistic identity has freed me up quite a lot internally. I’ve spent a lot of time alone, focusing on myself and reflecting on my life without many external demands or pressures. I’ve also stopped suppressing some of the thoughts and feelings that I was having before because the autism diagnosis rendered them both explicable and valid.

My intense emotions are triggered by anything that is autism-related, especially following periods of socialising with other autistic people or being in contexts where autism is at the forefront. I still get a lot of feels and emotional overwhelm in relation to these things even 2 plus years on, which I’m a little surprised by. I have difficulty identifying what the emotions are and why I have them. They are very intangible feelings that manifest as aches/surges/tinglings/swoops in my stomach and chest. They last 2-3 days and then dissipate and I return to my normal operational state of “neutral”. Sometimes I like having these feelings and want to grasp and immerse myself in the emotion, but other times it is just too much and I want to be able to move on to other things. A defining aspect of being in this state is that I feel unable to transition into doing anything else that would require much thinking or feeling – probably because my head and heart are already too full.

Have I learnt any coping strategies? I’m sure that merely having the awareness and knowledge about what is happening and why is a massive help. It means I know what to expect and so don’t feel so blind-sighted when I get overtaken by the emotions. The best tool that I can recommend is writing. Before my diagnosis I wasn’t really in the habit of externally expressing my deep thoughts and emotions – either in speech or in writing. I’d tentatively started journaling a year or two beforehand, but it felt quite exposing writing my thoughts and feelings down (especially with the knowledge that others might somehow find and read them!). But post-diagnosis, I started writing copious amounts about how I was feeling and now it’s become second-nature whenever I feel overwhelmed or want to work things out. I find writing is a really great way for getting thoughts and feelings out and for relieving a sense of urgency that I have around wanting to capture, document and explain them. I feel that I can relax more knowing it is all down on paper (even though I rarely look back over what I have written – which shows its mainly in the process, the actual product seems not to matter so much). Writing appears to almost trivialise the thoughts and emotions, taking some of the feelings and impact out. This is good in a way – it makes it easier to process and move on, although the downside is that it makes it harder for me to try to inhabit and prolong the emotion.

Another great strategy I’ve found is listening to music. I’ve found this invaluable in terms of helping me to really feel my feelings. It has to be the right music and I tend to fixate on listening to only one or perhaps two artists at a time (I can find it quite painful to transition between different genres or even artists in a given space of time – although I’m getting better at this now). Of course, the passing of time, especially a night of sleep, is a sure way to help the emotions dissipate. I usually need to leave most of the following day free for me to rest and process without having needing input too much new information – especially not anything emotional or involving other people. This way I’m able to recover much more quickly and find that I feel extra motivated and energised in returning to my usual routine the next day.

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Becoming “more autistic”, stress and self-care

So, I’ve become “more autistic”. (Note – the reason I’m using quotation marks is that it’s not really possible to become “more” or “less” autistic – autism isn’t a sliding scale or even a spectrum. Autistic people – just as any people – are simply liable to experience various changes in their traits according to their stress levels which, in turn, are largely dependent on their circumstances and environment.) I’ve written elsewhere about the how of my becoming “more autistic”. In terms of possible explanations for why this has happened, I think there are 3 main reasons:

Stress: My traits have likely increased because of stress-related factors, especially related to the sensory triggers I am currently dealing with on a daily basis at home. Other sources of stress probably include the intellectual and emotional intensity of processing my diagnosis and thinking about what it means for the future, as well as being at a rather unstable place in my life with the prospect of big life-changing decisions around work, home and relationships looming on the horizon.

Awareness: My awareness of my traits has increased massively which probably has some bearing on my self-perception and “how autistic” I seem to myself. So it’s partly simply a question of being more aware of what has always been there.

Acceptance: I’m sure that my traits have increased in reality as well because of the way I’ve embraced autism and relaxed more into my natural self, or how I’ve been learning about and (consciously or subconsciously) adopting autistic coping strategies – the kinds that make you look “more autistic” (like averting eyes, or stimming).

In particular, I’ve gained a whole new awareness around autistic sensory issues. Before my diagnosis, and before even having properly come across the concept of autism, I’d become increasingly aware of my intensifying dislike of noise. But other than this, I didn’t think of myself as being sensitive in any of the other senses. Now that I’ve gained so much more knowledge, however, it’s blatantly clear that I do have sensory issues in pretty much every modality and, more than this, that some of them (noise, light, movement) are probably core to a lot of autistic traits more generally (especially around social and EDF).

My awareness of visual sensitivities has developed as I’ve become more aware of how things like lights, movements, patterns and colour can affect an autistic person. I’ve also found that even just the act of taking in visual input – whatever it is – and especially if is messy, chaotic, unfamiliar – takes up energy. I’ve come across Irlen syndrome/scotopic sensitivity syndrome recently through reading Donna Williams and realise that I identify quite a lot with it. I think my visual sensitivity might explain the issues I have with using technology as well – I find looking at screens (even with the brightness turned down to zero and with colour adjustment) very tiring and overloading after a while, although I think this must be due to information overload as well.

Alongside this growing knowledge and awareness, my sensory issues have intensified to quite a significant degree the past couple of years. Correspondingly, my reactions have become more intense and anger/rage is sometimes an issue, which is wasn’t really before. I’ve never been a meltdown person, but now I’m questioning whether some of the reactions I’m experiencing are sort-of meltdowns, “mini meltdowns” perhaps, because they’re certainly not full blown or totally out of control.

The main way I try to deal with sensory issues is through avoidance – whether through avoiding situations themselves (hard to do when the noise is infringing on the place where you live), or by going into situations armed with earplugs, noise-cancelling headphones and dark sunglasses. I’m also learning to address my reactions when I do get to the point of overload – finding safe ways to release the intense build-up of negative energy so that it doesn’t become destructive – and a lot of this is relatively new to me, hence the (feeling of) becoming “more autistic”.

Below I’ve listed some self-care strategies that I (try to) use to help with processing overwhelm, sensory overload and energy levels. In a way, I’ve been “forced” into this due to experiencing increased sensory issues, nervous system stress and heightened autistic traits, but I think learning a lot of these strategies is only a positive thing and useful to maintain throughout life, even during times of less stress. They include:

  • Stimming! – I’ve been taking a more proactive approach to stimming, aided by the new awareness that what I am and have been doing is actually stimming. I feel more free to move my body in ways that feel good or necessary because I now know what it is, the purpose that it serves, and that it is both normal and beneficial for autistic peope. I no longer view something like fidgeting as a “bad habit” to be suppressed. I bought some stim toys, but also find that more “naturalistic” ways of stimming often work just as well – perhaps because these are the ones I’ve grown up with and become used to. I’ve become aware of the ways in which stimming helps me in social situations. I also discovered and semi-purposefully adopted some new autistic stims – especially pacing around and hand flapping – that I tend to do when I’m alone or at home. These really help me process what I’ve just been doing and make it easier to transition to the next thing.
  • Meditation – I made it my goal to learn and practice meditation for 2018. I found it useful for the first few months – probably because I was taking it quite seriously. But more recently I’ve been slipping away from practising “properly” and have fallen into something that is more akin to sitting in a meditative position (or sometimes not even this) and just letting my thoughts run wild and loose. This is not strictly meditation because I get lost in my thoughts and tune out of the present when I’m supposed to be tuning in, but I’ve found that even this is helpful (and perhaps necessary to help me catch up with processing) and I think it is better than nothing. I do hope, though, that I will regain the motivation and energy to start meditating the “proper” way again. It sure takes a lot of discipline. And, unfortunately, it seems that the more stressed you are or the more unprocessed thoughts and feelings you have accumulated (i.e. the more in need of being able to meditate you are), then the harder it is.
  • Naps – I’ve been finding that my energy levels and processing capacity before reaching the point of overload and a sort-of shutdown have really diminished over the past couple of years. I can only assume that this is the product of heightened sensory sensitivities and increased autistic traits in general. I’ve been getting into the routine of having a nap after lunch which I’ve found invaluable in helping to recover processing space, dampen the discomfort of sensory over-stimulation and regain motivation for the rest of the day. It makes such a positive difference (and science also highlights the benefits of napping), that I don’t even feel guilty about doing it.
  • Diet – I made a ton of progress in this area a couple of years prior to my diagnosis when I developed a special interest in nutrition that essentially led me to cut out all processed foods and refined sugars from my diet. I’m still going strong with this and feel confident that I can easily keep it up for life. More recently, I’ve developed greater awareness along the following lines: how different foods make me feel at certain times of the day (e.g. carbs at lunch aren’t great for my energy or mood, but are fine in the evening), experimenting with being vegetarian, vegan, gluten-free and dairy-free, discovering that I had some vitamin-mineral deficiencies, ensuring that I eat regularly to keep my energy levels up (I’ve noticed how before meals when my blood sugar is low I feel anxious and my thoughts are all scattered). Unfortunately, one thing my diet has not helped with are my digestive issues. A part of me, though, thinks that the root explanation for this may simply be stress.
  • Exercise – In addition to my usual running routine coupled with occasional dancing around the house, I’ve recently taken up tai chi (thanks to a great introductory workshop at Autscape), and I really hope to get into yoga more as well this year. I like the idea of boxing (though with a punchbag, not a person) and may try to get equipment so I can do this at home in future (I hate having to go to gyms or classes in order to exercise). I should do more of all these things – especially dancing – because they feel so good (especially in the aftermath). Movement is so important, especially for a body with an accumulation of stress hormones and especially in a world where most of us spend so much time just sitting.

There are so many more things I’ve read about which could really be worth a try, especially various mind-body techniques. I came across the Polyvagal theory a few months ago and have been meaning to try out some of its suggestions for de-stressing the body. I also made a sensory diet for myself earlier in the year, but rarely look at it and haven’t been able to make the effort to apply it to my actual routine in any sort of systematic way. I seem to have a major blockage when it comes to this. Perhaps I don’t really want to, or I’m afraid it will be too hard, or I have an issue with starting, or I don’t really find it that interesting, or I feel overloaded with the amount of information and stuff already in my life… which is where the next section comes in.

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Information processing, overload, executive functioning, routine and lifestyle

When I first started learning more about autism, I didn’t think that executive dysfunction (EDF) was something that really applied to me. I’ve always been a pretty organised person. But I’ve since realised that there are a number of reasons for this, namely that I instinctively developed various coping strategies that mask the underlying issue, even to myself. One of these strategies was simply feeling averse to taking on too many different things at once. I’d presumed it was just a personal preference or choice that I wanted to focus on only one or two things major things at any given point in my life, when actually it was probably a necessity.

I’ve learned more about EDF and the role that routine and various other strategies can play in minimising it. Executive functioning encompasses quite a broad array of things and whilst there are aspects that I don’t struggle with much or at all, and may even be better than average at (inhibition, self-regulation and control, organisation and planning) there are a few areas where I do encounter problems (decision-making, attention switching and multi-tasking, working memory, transitions). Here are a handful of issues that arose for me post-diagnosis:

  • Processing capacity – I’ve become both more susceptible to and aware of information overload, especially around technology use, but also even just through doing things like writing or reading. This has become worse over the past few months, as if I am becoming overloaded by any and all information (both external and internal) in itself, and by the very processing involved in simply existing. In short, it seems to take me a lot more energy to navigate and successfully complete a day than it did in the past. A few years ago, I just took it for granted that I would have enough energy to last the whole day without needing to take a lot of breaks to recoup spoons. All of the strategies listed in the self-care section help me with this. Also, trying to focus on doing just one task at a time, minimising multitasking as much as possible and easing myself through transitions (with time to process what has been and to predict/visualise what is next) are great helps.
  • Routine and time-checking – I am very reliant on routine and feel out of sorts when I deviate from it, especially if wildly or unexpectedly. At the same time, I can feel confined and constrained by routine, and it can certainly suck the spontaneity and spice out of life if followed too stringently. I feel compelled to plan out the sequence of activities for the day in my head and this in itself is a source of anxiety (because it can sometimes be hard to do), especially when I become too rigid about the timings of things when there is no real necessity. To circumvent this, I’ve been trying to clock watch a lot less. But I find I can be quite all or nothing with this – the more I keep track of the time, the more I feel the need to. On the other hand, I also did an experiment to see how long I could go without looking at the time – and I managed to look only once a day (quite an achievement I thought!) This was a rather freeing experience, but obviously it’s simply not convenient or possible for most people in most situations (I did the experiment during a very slow-paced holiday when it didn’t really matter what time it was). At the moment, I’m working towards a happy medium – time checking when it serves some genuine purpose and makes my life easier, but otherwise trying not to.
  • Transitions – I am finding that making shifts between activities, spaces, states of thought and mood is becoming increasingly hard. Allowing time to process is the key here. I’d recommend taking time to sit or lie down, perhaps close your eyes, breath and let things just process in your brain before trying to visualise the steps involved in what you’re going to be doing next. I find that pacing around along a short repetitive route really helps with thinking. I’ve also noticed in myself that it is the transition itself and the first few moments of the new activity that can be painful, but soon after this everything is fine and the brain seems to shift gears and catch up with the new thing you’re doing. In fact, it seems that the best way to deal with the discomfort of the transition is just to do the transition. You need to move on in order to get over the previous thing you felt stuck on. If you stay in the same place/state, lingering on the edge of a transition, then this can actually prolong the discomfort and the sense or reality of being stuck.
  • Excessive conscious thinking, using left brain too much, being too focused on goals and closure – I’ve been realising that I am probably quite left-brain dominant and also find it hard to switch my conscious processing brain off. Whether or not this is related, I can also find it hard to spontaneously feel or follow my wants in the moment. I need to plan things out in advance and am usually excessively aware of what I am doing in the present moment. I also find it hard to engage in things that don’t seem to me to serve some useful purpose, i.e. just doing something because I feel like it or it feels good, as opposed to working on a project with a defined goal (I am an INTJ after all). I am getting better at balancing this though. I’m making a conscious(!) effort to intersperse more right brain, creative, fun or spontaneous activity into my day, things like art, music, dancing, playing guitar, humour, spending time with animals, and with other humans.
  • Technology – I have a love-hate relationship with technology and the internet. I need/want it a lot – and perhaps even more than I currently use it – and yet I also need/want less of it because it very easily overloads me. I do need/want it, yet I also need/want to be free of it. I’m sure, like most things, balance is the key. I suspect I am currently using it too much. And despite the fact I want and need to use it for so many things (work, research, writing, social media, entertainment), I’d probably feel better if I used it less. Overall, I have reduced by computer time a little over the past couple of years because I find it saturates my brain and makes my body feel tense after more than a couple of hours (although I push to do at least 3-4 hours a day, sometimes 5, so I can get things done – and this doesn’t even include looking at my phone or iPad).
  • Special interests – This one is still very much a big unknown for me. I am still massively and almost exclusively focused on autism (although my other interests around travel and music are making more of an appearance these days too). Yet I have to admit I am feeling less enthused than I was a few months ago. Some of the spark is rubbing off! I am learning less, because I know more and things can sometimes feel a bit stale. I do still feel passionate and very interested in my overall project around writing a book, blogging, connecting with the online autistic community and hopefully getting into doing advocacy through all of these things. But sometimes I do think that a large part of what is driving me is a need for closure – simply to finish what I’ve started (even though I am a very long way off finishing(and “finishing” isn’t even a thing that can be applied anyway – there will always be more to learn, the world of autism is constantly changing, which is great, but can also feel a bit overwhelming and unsettling when you have a deep urge to try to know and keep up with everything there is). Sometimes I get saturated with autism stuff and feel a need to dip into some of my other past interests – to engage with a more diverse range of videos, films, books, communities and topics of conversation. When I do this for even a short while, I always feel a strong urge to focus on autism again. I’m not diversifying (much) yet. And I’m not sure I want to.

What the cutting-edge of social neuroscience has to say about autism

(Plus, how it is saying it.)

I’ve just finished reading a few pages on autism found within the book “Social” by Matthew Lieberman. The author is a leading researcher in the field of social neuroscience and the book is a sweeping overview of how our social brains work to make us the social creatures that we are. (Of course, the “our”, “us” and “we” here refer to neurotypicals, as they are necessarily assumed to constitute the entirety of the audience for any book that isn’t autism-specific – and sometimes even for books that are autism-specific, but I digress…)

It was simultaneously one of the best and worst things that I’ve read about autism from outside of the field of autism studies and the autism world more generally. It is written by a nonautistic neuroscientist who researches the social brain, but who doesn’t specialise in autism per se. He does, however, have a few things to say about autism and autistic people (or about people “fated” by autism as he so charmingly puts it) in his book.

The actual content of what he has to say about autism is pretty progressive (when compared to some of the more established theories out there), and I will get to this below. The author knows his stuff and does a great job of outlining and reconciling some of the messy data on a few different aspects of the autistic social brain (and on all social brains really), including issues surrounding amygdala functioning, the mirror neuron system, central coherence and plenty more. With some important caveats, which I will get into, the ideas within these few pages are well-worth looking over. They helped elucidate a few points for me and certainly stimulated my thinking.

But first, I want to address what was not so good about what was written, namely how the author wrote about and represented autism. Sadly, this is nothing out of the ordinary and will probably fail to shock just about everyone (after all, the author’s purpose is not to shock – he is simply recycling received ideas about autism). But therein lies the problem. Ableism vis-a-vis autism is rife, it is commonplace and it is taken for granted. So much so, that ableist attitudes are not uncommonly interpreted as signs of someone with lots of “sympathy” and “good intentions” who is simply doing their best to “help”. It often starts with and is most clearly reflected in language use. So here is a list of the not-so-riveting remarks concentrated within just a few pages of the book (warning: sarcasm alert for some of my commentary).

– The author calls autism a “profound disorder” – Apparently just having “disorder” isn’t enough, for autism – devastating as it is – we need to make sure we say profound.

– He calls autism “sad” – Twice. How very sad (*fighting back tears*)

– He calls autism “tragic”. How pitiful. A reflection of society’s pathological (not to mention highly repetitive) need to ostracise, shame and pity those perceived as different perhaps?

– When recounting his drug-induced “autistic-like” experience (see below) which made him appear odd, awkward, and antisocial, he includes the comment: “which, hopefully, is not how I come across the rest of the time” – His attitude is clear, and why think twice before stating it? We all know how awful any sort of social difference or deviance is. God forbid being autistic, what a complete embarrassment that would be. Who could possibly want to be autistic? He certainly doesn’t want it for himself, he’s clearly way too good for that. (Another issue: conflating autism with social avoidance).

– He refers to those who did not develop autistically, compared to those who did, as being “not so fated”. Nice. That’s actually one I haven’t heard before. 

– And my personal favourite, he says “If empathy is the peak of the social mind, autism is sadly one of its low points”. Poor autists, so lowly. (But at least we tend not to go around systematically denigrating and shoving an entire group of people to the bottom of a metaphorical pile.)

So there we have it: yuk. I don’t know why I was so affected or annoyed by reading these remarks because, as I said, this sort of language and the attitudes that underpin it are all too common. I have noticed, though, that nonautism-specific books – those books that cover neuroscience or psychology more generally (i.e. focusing on the typical population by default) but which mention autism in passing – seem to contain some of the most pathologising attitudes and language, even if the science they are relating with regards to autism is actually fairly progressive. There are some notable exceptions, but I find that most autism-specific books are not so bad in this regard. This is probably because the people writing them realise that autistic people, their parents and those that work with them constitute the primary audience and probably don’t want to see themselves or their loved ones referred to in such dehumanising and troubling ways.

In these more general neuroscience and popular psychology books, however, where autism is only touched on in passing, it is as though the author could never possibly conceive that an autistic person – or someone close to one – might ever pick up their book. We are simply assumed to be “social aliens” (as one subheading in the book is titled), those situated on the outside of “real people” and their “real social world”. These neurotypical generalist neuroscientists are positioned outside the world of autism, and they are likely not engaging with autistic people in any meaningful way, or at all (outside of neuro-imaging studies).

I think this is why I find the pathologising language in these books so troubling. These authors form part of the vast majority of the population that are not part of the autism world (comprised of autistics, parents, allies and autism professionals), and so they reflect the attitudes that likely reside outside of the autism world. Although said autism world is a very divided place, and certainly home to plenty of deficit-y and often curebie negativity, it is – of course – also home to the most progressive and enlightening views about autism that there are (usually coming from autistics themselves). Sadly, these progressive views are still unlikely to be found anywhere outside of the autism world (just pick up a popular general overview on social neuroscience or psychology that mentions autism, and you will see), whilst the mainstream views of the autism world (autism-as-deficit-slash-tragedy-and-urgently-in-need-of-cure mentality) do percolate further out into the non-autism world. This could lead me into the importance of advocating more widely and not simply preaching to the choir, but that’s a digression. So, instead, onto the actual content of what “Social” has to say about autism…

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Within these few pages, the author is mainly trying to shed light on the intriguing yet ever-complex and as-yet-unanswerable question of what autism essentially is. What lies at the core of autism? What is the primary mechanism at work, and what can be more rightfully thought of as secondary developmental consequences?

Mainstream theories and assumptions about autism centre around the primacy of a theory of mind (ToM) deficit. Lieberman unequivocally states that impaired theory of mind is a thing in autism, and that this supposed fact is not up for debate (stating, rather bluntly I might add, that “there is little debate among scientists over whether autism is associated with impaired theory of mind. It is”). Of course, this position could be subject to all kinds of critique (see, for example, Damian Milton’s “double empathy problem”). But in making this statement Lieberman is also betraying his lack of “interactional expertise” with the autistic community, and failing even to acknowledge that such a community exists – let alone that it could have its own theories and forms of knowledge in circulation. His statement that ToM deficits “appear to explain many of the difficulties autistics face in daily life” is especially revealing in this regard. I’m not sure that many autistic people would immediately identify a supposed ToM deficit as the major source of their difficulties. (It would more likely centre around things like sensory issues, anxiety, mind-body disconnects, or feeling misunderstood by others.)

Instead of troubling received wisdom about theory of mind and autism, the author hones in on the question of causality: is impaired ToM the cause or consequences of autism? This is undoubtedly an important and fascinating question, one that gets right to the heart of the question “What is autism?”. This is where things gets interesting, because Lieberman brings in the Intense World theory. I won’t go into the details of Intense World here, but suffice to say that the theory puts forward a promising set of arguments and findings that are a refreshing departure from the ubiquitous “social-first” accounts of autism. It foregrounds the actual internal experience of autism and, as Lieberman states, because of this very fact, it appears to be rather counter-intuitive (although perhaps only to NTs – intense world theory makes perfect intuitive sense to me as an autistic person and for many other autistics too). Unfortunately, despite some compelling empirical evidence, Intense World theory remains controversial and apparently there are few researchers willing to dedicate themselves to exploring it further. This is a shame given the relative acceptance it has within the autistic community (not to mention the fact that – in my view – it is the closest we have come to an accurate understanding of autism).

In his book, Lieberman includes a personal example to illustrate the core tenet of the intense world theory of autism. This revolves around the notion that an intense internal experience – one arising from chaotic sensory perceptions – results in the sort of social behaviours (namely avoidance and awkwardness) that are seen to be characteristic of autism.

The author recounts a bad drug trip, from his days as a college student, in which two things happen. First, from the outside, he states that he must have appeared very awkward, anti-social and disinterested in the social world around him (for example, he notes that he didn’t say much, distanced himself from others and avoided eye contact). Second, he details his internal experience, describing it as “one of the worst days of my life”. His senses became very intense, dialed up to eleven, and this changed how he perceived and responded to the social stimuli around him:

“That drug had heightened all my senses… It was all just too much for me to process, All the perceptions we have that are usually in the background were suddenly in the foreground and much too intense. An unmoving environment would have been distressing enough, but I was surrounded by people making noise and full of facial reactions, gestures and other sudden movements. All of it was very intense to me, surprisingly unpredictable, and frankly, terrifying.”

I was surprised and fascinated to read about his experience, because it is a rare thing for a neurotypical to be claiming some degree of first-hand insight into the experience of being autistic. Of course, we don’t know the extent to which his senses were heightened by the drug, nor how closely his experience might have approximated an autistic one. The author is right to emphasise that he in no way thinks or wants to imply that taking these drugs made him temporarily autistic. Nevertheless, there is a slight danger in even implying a link between a neurotypical’s bad drug trip and an actually autistic experience, even if there appear to be some superficial similarities in how each side is describing their experience. It is also slightly troubling to see such a negativistically framed experience (described as “one of the worst days of my life”) being equated with autistic experience. It is simply adding to the mass of information already out there which is spreading fears and myths about just how “awful” autism is.

Moreover, I also found it slightly depressing that the story of an NT having what is a possible approximation of an autistic-like experience can seemingly count for more – in terms of providing ideas and evidence for various theories about autism – than the experiences of actually autistic people themselves. Lieberman does include one “anecdotal” piece of evidence from an autistic person in the book. But these “anecdotes” shouldn’t be mere side considerations or supportive add-ons, they should be placed at the core of our theorising about autism. They should be where we start to form our theories and where we should keep returning to see how the science is or isn’t matching up to lived experience. Lieberman is presenting his neurotypical “autistic-like” experience as a form of supporting evidence for the Intense World theory. But why not refer to the masses of evidence coming from the actually autistic who could tell you the very same thing? Shouldn’t our voices count for more, or at least count at all?

Despite all of this, these few pages of the book do contain a lot of value in the way that they spotlight the often large disparity between internal sense-felt experiences and how this translates (or doesn’t) to the outside. It is encouraging us to think twice before making assumptions and judging a book by its cover – a well-worn cliché that applies to all, but perhaps especially where autistic people are concerned. Lieberman is forwarding the important notion that autism is characterised by hyper- as opposed to hypo- sensitivity to sensory, social and emotional stimuli. (Although, curiously, he also appears to contradict his entire argument in later stating that autistics are nevertheless “insensitive to the social world”. Perhaps this is only indicative of just how counter-intuitive all of this is for NTs… He just stated that appearances do not necessarily reflect internal experiences, and yet here he is falling into the trap he outlined only a couple of pages previously.) The author also highlights that internal experience and outward behaviour do usually connect to one another (a fact that behaviourism fails to consider or acknowledge), even if the connections appear counter-intuitive and back-to-front. Here is another pertinent quote along these lines:

“People could not have guessed my internal experience from my outward behaviour. My behaviour and experience were intimately connected, but in a non-obvious way. My outward behaviour was antisocial, but this is not because I was uninterested in the social world. Rather, I was overwhelmed by the social world. To put a fine point on it, I was overwhelmed by everything, but the social world was the most overwhelming part”.

Lieberman then returns to the issue of ToM, suggesting that living in an intense world promotes social avoidance which, in turn, causes a young autistic person to miss out on many of the typical social learning experiences that lead to the maturation of the ToM mechanism and neurotypical social behaviours. Hence, he forwards the view that sensory perceptual differences are primary to autism and that a developmental perspective is needed to explain the subsequent emergence of the social (as well as the repetitive) aspects. This is a very promising avenue (setting aside the assumption that autism must necessarily be associated with ToM deficits) and it certainly makes a lot more sense than the “social-first” accounts.

However, I think the author makes one important oversight in the above theory. He neglects to mention or account for the impact of intense sensory perception in the real-time, here-and-now of any given social interaction. In other words, it is not simply the potential developmental consequences of sensory issues for ToM – via the mediating factor of social avoidance – that we need to account for (for one thing, not all autistics are primarily socially avoidant, not even at a young age). Autistic sensory perception is going to shape social perception and response even if you’ve never skipped out on a social encounter your entire life.

This oversight is made clear when Lieberman notes that autistics miss out on seeing and hearing many social inputs. The reality, of course, is that we do see and hear social inputs – actually far too much – and that the main issue is that we process the input differently (because of its intensity). Thus, it is not simply a question of input, as Lieberman assumes (and as though if we simply had exposure to all the social inputs at a young age that NTs do then we would not continue to develop autistically). It is how the inputs are being processed that is at issue (something likely set in stone very early on, even prenatally), not merely the level of exposure to them.

This then leads us back to some potentially interesting conclusions about ToM. In fact, his bad drug trip illustrates the point I want to make quite nicely. The author is an NT with a presumably typical ToM. He did not become autistic or even “a little bit” autistic that day. Yet his senses were dialed up, he felt socially overwhelmed and was socially avoidant – all aspects characteristic of autism. And yet, despite all this, obviously his ToM had not changed. His sensory perception had changed, though. This suggests that having an impaired ToM is not necessary in order to experience social overwhelm and subsequent avoidance. Alternatively it could also point to the possibility that ToM can be subject to temporary suppression during overloading situations.

Perhaps this is what Lieberman was experiencing (a ToM that was present but which couldn’t be outwardly expressed or perhaps even internally accessed due to overload), and perhaps this is what is happening for autistics too. Autistic ToM likely does exist, but may well be functioning differently (e.g. perhaps in a delayed or overly conscious manner) and in a situation-dependent manner that is largely related to the intensity of perceptual inputs and the availability of processing bandwidth. In sum, then, sensory perception could well be impacting ToM outside of any intermediary developmental mechanism. Yet, as this book demonstrates, researchers still appear to be neglecting the importance of “sensory”, overlooking its likely very direct impact on social functioning, and instead relegating it to an indirect function (in this case mediated through early social avoidance). On the plus side, at least some researchers are now at least starting to acknowledge some role for sensory perception in autism, even if it is a rather indirect one.

Overall, despite some seriously questionable aspects – especially in terms of the language and underlying issues with representation, as well as the uncritical approach to ToM – the book “Social” points towards some interesting avenues that will hopefully represent future directions for autism research. I’m currently in the process of writing a book about autism and I explore the issue of causality between sensory and social aspects a lot there, among many other things, so keep an eye out for that if you’re interested in reading more.

Everything wrong with “Extreme Love: Autism”

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I usually appreciate Louis Theroux’s documentaries, but this particular one – about autism – was rather painful to watch. It’s sad and worrying to see how harmful attitudes and practices get propagated and normalised in mainstream media, including in shows that you usually respect and enjoy. After watching the documentary, I felt the need to list all the aspects I found troubling. It wasn’t all bad for sure; there were some okay bits. But here is a not-so-short list of where I think it went wrong and how this episode constitutes a bad and dangerous (but unfortunately all too normal) (mis)representation of autism:

– Don’t call it “Extreme Love”, as if loving us requires super human amounts of effort and sacrifice

– ABA – just no

– Don’t hold and move a child’s head in order to force eye contact

 – Excessive high fiving is infantilising, especially for adults

– Don’t stare at an autistic person or repeatedly try to elicit a direct verbal response when it is clear they don’t want to engage. Don’t represent this lack of “normal” response as a tragic abnormality

– Meltdowns are NOT tantrums! (And perhaps find a better strategy than sitting on or forcibly restraining your child)

– Don’t confine autistic adults to a life of menial rote work or suggest that this is all they are capable of

– Where were the AAC devices?

– Don’t enforce compliancy for the sake of compliancy

– Don’t ask a parent whether they wish for a cure. Parents, don’t say that yes, of course you want your child to be cured

– Do not imply that your autistic child is hard to love. Do not say that you don’t get much joy from them, and especially not when they are standing right there! (Wtf! No wonder you have a strained relationship with your child if this is what they are hearing you say)

– Don’t heroicise the parents, saying it is a miracle that they can live with us

– Don’t make assumptions that autism must be responsible for strained marital relationships and family breakdown

– Don’t focus solely on outward behaviours, completely neglecting to draw attention to the internal experiences driving them

– Don’t suggest that your kid miraculously became verbal following a religious ceremony

– Don’t say God gave you an autistic child in order to test you, to make you a better person or because he knew you could handle it

– Don’t scream at your kid to stop screaming (unsurprisingly, this only provoked more screaming)

– Watch the patronising tone, questions and “praise”

– Don’t say that one autistic person is better than, improved or “higher” up than any other

– Don’t say that your child is trapped in their own world, oblivious to what day it is or to anything going on around them

– Don’t imply that we are aggressive or dangerous

– Don’t say that you wish your child had been neurotypical and express sorrow and grief at their way of being in the world

Is this too much to ask?

Autistic Speaks

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Over the past few months I’ve been reading and re-reading Melanie Yergeau’s “Authoring Autism“. It’s a brilliant book (to say the least) that has really helped me progress in my understanding of autism’s and autistic people’s placement and treatment in society. It has inspired me to write this blog post about some of the ways in which autism is misunderstood by nonautistic society and how autistics are seeking to counter problematic mainstream framings. I used some thoughts from the book as a starting point and ultimately the post ended up going in a few random and different directions according to how my thoughts flowed.

Themes I touch on include: diagnosis, disclosure, how autism is misunderstood, redefining autism, passing, functioning, ABA, ableism and, of course, the importance of autistic voice. Sometimes I am addressing a neurotypical reader, sometimes an autistic one – I hope it is clear which one at what time. I’d love to hear any feedback you may have in the comments.

Note: Melanie Yergeau also has a couple of interesting videos up on YouTube (e.g. this one on “Shiny Identities“) and I thought I would also try to make my own video based on some of the text in this post. I will link to it here once it’s finally done. I’d like to say a big thank you to Melanie (should she ever find this) and recommend that everyone pick up her book!

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Autistic Speaks

Autism remains critically misunderstood. They say that we are deficient, defective and disordered. That our brains and bodies are broken and dysfunctional, diseased even. We have missing Theory of Mind (ToM) modules or broken mirror neurons. We cannot comprehend and empathise with – or perhaps even apprehend the existence of – other minds.

We are cast as decidedly “less than”. Less than fully aware (of both ourselves and others), less than comprehending, less than empathetic, less than communicative, less than intentional, less than living, less than fully human. In the collective imagination, we are pictured as empty lifeless shells, our innards bombarded by and exploding outwards as symptomatological cluster f*cks: defecits in social-emotional reciprocity, impairments in social imagination, stereotyped and repetitive movements, bizarre meaningless behaviours, narrow, restricted and ultimately uninteresting interests…

This “lacklustre lack list” (as Melanie Yergeau puts it) is permanently pinned to the autistic bodymind, ultimately serving to degrade our humanity. We are storied and treated as though we are rhetorically halved – demi-rhetorical in fact – and hence effectively rhetorically (and sometimes materially ) negated and erased. We do not function as fully human – at least not compared to the fully functioning neurologically typical (who presumably function so well that they lie above and beyond any “functioning” measure or spectrum). Being “less than”, we are diminished to a state of virtual non-existence, a sort of “lifeless living” that is worse than death.

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Of course, they, the so-called “experts”, have us wrong. Autism “experts” have misunderstood us, the autistic (the real experts), in critical and (to us at least) all too obvious ways. Perhaps this is because they have not been listening to our voices.

What about Autism Speaks? Do they not stand up for autism/autistics? Not quite… In fact, they achieve the very opposite through attempting to stand above, over and in for us. Autism Speaks (aka nonautism) speaks over autistics. The reality is that “autism” does not speak. Rather, NTs speak for autism. But autistics certainly do speak. “Nothing about us, without us”, we say. We are speaking, but are they listening?

And, in case you were wondering, we are in fact a “we”. We are an “us”. Not a “culture of one”. Nor can we be divided. We cannot be categorised and separated into “this” and “that”, “these others” and “those others”, however much you may want to force us into neat yet distanced and limiting containers. We are not “high functioning” or “low functioning”, “mild” or “severe”. We are all autistic. Autistic equals. All equally valuable autistics. Fully autistic and human and equal. Equals with each other, and equals with you. All of us.

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We are not “less than”. We are, in fact, “equal to”. This fact might seem like stating the blindingly obvious (I hope). And yet, we live in a world where such sentiments about equality are still commonly denied (even if only implicitly), where they need to be stated, repeated and advocated for continuously.

What’s more, we are quite often “more than”. We certainly sense and perceive more. We may move more. We very often feel more. We may think a whole lot more as well.

We may not share quite as much, at least not in ways that others may readily understand. But this does not mean that our internal life is not “equal to”. In fact, it is probably in many ways “more than”, and this itself is very often the source of our so-called problems. Too many sensations, too many movements, too many emotions, too many thoughts. 

If you listen and watch carefully, you will start to notice how we are in continuous interaction with our environment. We are not shut off and out. Impervious to the outside world. Trapped inside the autos of autism. It is the very opposite. We receive and process the world at a more intense level. We end up with a lot more of the outside in our inside. We are skinless, shell-less, boundary-less. It is you, the NTs, with the skins and the shells, the filters and the barriers, the immunity to much of the outside.

We autistics may close off, cover up, withdraw, shut down, meltdown, and more, but this is because we need to self-protect. There may be too much noise, too much light, too much movement, too much blah blah. Too much. But ultimately, the way we are is adaptive, it is logical and it serves a purpose. It is not random or meaningless. It it essential to our beingness. It is autistic. It is also very human. Autistic humans. Human autistics. One and the same.

Autistic traits are not only, or even mainly, negative. Autism does not equal “challenging behaviour”. Autism and autistic behaviour are not one and the same thing. Autistic behaviour stems from autism, certainly. But it is mediated by a hugely crucial factor: the environment. Provide us with the right environment and it can make all the difference to us, and to you. The positives will come to light. We will flourish. We will still be autistic, just as autistic as ever. But we will have less negativity in our lives, and hence less problematic behaviour, just as would be the case for anyone. Autistic “challenging behaviour” is not autism, it should not be taken for-granted as such. Nor is it meaningless. Behaviour is communciation. We are trying to tell you there is a problem. Help us to address it if you can and you will see.

We resonate and merge with, in both the social and non-social worlds. We are less discriminatory in our sensory filtering, so all the stimuli impact us deeply. We see beauty others miss. We may be profoundly affected by emotions others skip over. We echo, stim, repeat, perseverate. We crip, queer, invent and involute. We self-diagnose and disclose, narrate and rhetoricise. Whether verbally or not, whether intentionally or not. We embrace meaning, we are full of it, yet we can also reject it (whether meaningfully or not) and venture beyond, expanding the realm of the rhetorical.

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All of this might sound a bit weird. A bit paradoxical. Perhaps this is because of the misunderstandings that abound. After all, the world is not used to thinking about autism positively, critically, queerly, or indeed autistically.

“What exactly is autism anyway?” you may be asking by this point. Hmmm, let’s see… defecits in social communication and repetitive, rigid, blah blah, bleurgh… Down with the DSM. Dump it. Down the drain it goes. Woosh!

Want real insight? Want autism at its essence and in all its diversity? Listen to autistics. We will tell you…

You see, our sensory perceptions are quite intense. We are strongly affected by everything around us. This is because we have an especially high information processing sensitivity. So what, you say? Well, this affects our visceral state which affects how we move (or don’t move, as the case may be). Social communication is all about movement after all – the muscles involved in speech production, facial expressions, gestures, posture, regulating eye gaze and even in controlling muscles in the inner ear that help regulate what we hear. Our intense sensory perceptions affect our information processing, affects our visercal state and our movements, affects our communication and behaviour.

Surely this is a more logical way to think about autism. More logical than “autistics lack ToM because they are autistic and… autistics are oblivious to other minds?” Why do we lack ToM, ToM theorists? ToM is not the be all and end all. It is not situated at the core of everything, or anything for that matter. What about our senses, perceptions, physiology and motor movements? These lie at the heart of us, of every person. Maybe our reality is a bit different to yours? Surely you can use your fully functional and superior ToM to comprehend this. Our sensory perceptual reality is different. Our information processing and cognitive styles are different. ToM results from this, it is a secondary outcome. Perhaps, then, we simply have a different ToM as a result. Autistic theory of mind. Maybe we should be asking “theory of whose mind?”

Ultimately, autism pervades (that much you have right). It affects every aspect of our existence. Autism is all of us. Not just one part of us. Nor, god forbid, a separate entity entirely that has tragically latched onto an otherwise “normal” person. Autism + person are inseparable, hence we have “autistic person”, not person with (separable and – we hope – potentially detachable) entity of “autism”. You don’t want to define someone by their autism. News flash: Autism does define us. It isn’t the sum of everything we are; we have just as many multiple identities as anyone else. But it can’t be separated from any part of us either. Just as your neurotypical status is inseparable from you.

*

I had – and still have – difficulty speaking with people. I didn’t know why at the time. I thought it might be my fault (“my brain is working too slowly to keep up”). I thought it might be their fault (“why are they doing everything so fast?”). I was isolated from my peers. I isolated myself. I didn’t know why. Oddly perhaps, I don’t remember feeling unhappy about this. I was close with my family and that was enough. I hyperfocused and found purpose in my studies and interests. I didn’t really feel much about it. Perhaps because I didn’t let myself feel. Now, though, I feel it more. Perhaps that’s because now I know why. It feels safer and more acceptable to let myself feel it. It’s nobody’s “fault” after all, least of all mine. Is there even anything “faulty” at all? Lacking the knowledge I was autistic perhaps, the lack of self-understanding, the lack of access to autistic community, but not my autism itself.

Eventually, I underwent diagnostic assessment for “Autism Spectrum Disorder” / “Asperger’s Syndrome”. “Why the disorder?”, “Why the syndrome?”, I thought silently. Why am I being directed to and through mental health services? I am not mentally ill. Why am I having to refer to the DSM, a manual of mental disorders? “Don’t worry, it’s not a disease” the psychiatrist informed me after he made the diagnosis. “Well that’s comforting”, I thought. Now I know people out there think autism is a disease… nice.

I wanted and needed a diagnosis to confirm my newly found identity, to validate and even to liberate my very self. Unfortunately, such a procedure involves subjecting oneself to a heavily pathologised medical model of autism that lays out pretty much every aspect of autistic beingness in terms of a checklist of supposed deficits, dysfunctions and failings. Just what I needed!

Yet diagnosis is important. Really, though, it should be less about medical professionals and their checklists and more about self-identification and self-acceptance. Ideally, the post-diagnostic journey should signal a shift well away from and beyond the pathology paradigm. A bucket load of thoughts and emotions are unleashed that require processing. I embarked on a journey that led towards acceptance and increasingly towards pride and advocacy. I am still on this journey, and probably always will be. It can sometimes be a tricky road to travel, yet hugely necessary and rewarding at the same time.

Self-acceptance involves looking at the dominant view of autism (and the forces that create and reproduce this dominant view) with a critical eye. It means reframing what society thinks it knows about autism – what we are told by professionals, parents, charities, media and broader publics – and recasting these messages in a more accurate (not to mention empathetic) light. It means adopting a different starting point, one that stems from our own lived experience and from the perspectives of other actually autistic people, us, the real experts, the ones who should be shaping the narrative from the get-go. Many of us are trying very hard to do this – whether through small actions that impact on those around us, or through larger-scale advocacy – but we are rarely listened to as a priority.

I needed permission to be, to be my (autistic) self, whatever this might be. Self diagnosis + official confirmation provided me with this permission. Yet somehow I still needed more. It was not quite enough. I still felt some shame, the sense that something was “wrong” with me. I felt a pressure to change, rather than to simply be. I thought I ought to try to “better approximate the rhetorical trappings of the neurologically typical” as Melanie Yergeau puts it (see p.116 of Authoring Autism). Perhaps this is unsurprising given the existence, persistence and escalation of therapies that are explicitly designed to change us, to convert autism to nonautism – always the preferred option. ABA, social skills curricula, special ed programs, and worse (e.g. biomedical treatments), are all designed to change some core aspect of who we are, conveying to ourselves and to the world that there is something amiss here, something broken and in need of fixing by those who know best.

Diagnosis often paves the way for intervention, especially where children are concerned (autistic adults, meanwhile, are usually simply swept aside). Early intervention is where it is at. Intervention designed to build and shape a more suitably neurotypical person out of the raw materials of the empty ToM-less shell that is the autistic. This is not the road to acceptance and understanding, or even to conventional notions of “success”. Of course, we are told otherwise. We are told “it is for your own good” and “you will thank us later”. We will be happpier this way, if/when we can change. We will be closer to, even indistinguishable (*fingers crossed*) from our peers, closer to the norm, so of course we will be happier – who could question such a thing?

Happier? Surely they don’t mean this? Perhaps they mean that they will be happier when we are more “normal”. But they are conflating us and them – such brilliant ToM. Perhaps they mean we will become more “high functioning”? But whose “functioning” are we talking about? And “functioning” at what cost? The reality of “passing” for many autistics is one of loss of self, of intense fatigue, mental ill health and ultimately burnout, possibly worse. Passing is the masking of autism, and so of self. ABA is the masking of autism, and so of self. Intervention is not about the curing, or even the changing, of autism. This is because autism itself cannot be made to disappear (this, at least, behaviourists appear to understand). It is about the covering of autism. The plastering over of an authentic autistic self with a surface level, plasticky, socially acceptable facade. So shiny on the outside, yet so suffocating from the inside.

*

Autism belongs to the autistic, and so autism is in need of being reclaimed. What does it mean to be autistic? We need to redefine, reinvent and own the answers to this question.

What might our challenge involve? It might mean casting light on nonautism and on ableism. It might mean the questioning of what are decidedly allistic constructions of sociality and successful rhetorical exchange, and of the privileging of sociality itself (see Authoring Autism, p.197).

Where does the solution lie? Cure autism? Or cure ableism? Ignore and actively supress autistic voices? Or challenge the hegemony of narrow neuro normative narratives?

I think it starts with our own selves. We need to feel proud and accepting of our autistic selves. Do we feel able and safe to sport autistic flares publically with pride? Should we? Will people notice, care or comment on these flares? Will they elicit questioning, even denials of our diagnostic status and autistic disclosures?

Autistic pride badges, and disclosure more generally, are potentially powerful (though admittedly sometimes unsafe) things. They are the opposite of hiding. Hiding signals shame and/or oppression, whilst openness signals pride and/or safety. It often requires a certain amount of privilege to be able to publicly disclose an autism diagnosis. This is a sad fact, one that needs changing. Autistics who are able to disclose safely should consider exercising this privilege. Being openly and proudly autistic is an important means towards changing societal perceptions about autism and towards increasing the number of autistics who are able to identify both to themselves and to the world.

In her blog, “Autistext”, Melanie Yergeau writes, “when socialising through speech, I will almost always be awkward” (link to post here). Thinking about and repeating such a refrain in my head (a phenomenon known as echologia) makes me feel good. Why? Because it relieves a sense of shame and a need to hide. It demonstrates that the shame attached to such things as awkwardness is far worse than the actual thing itself (which isn’t really that bad, not bad at all). Melanie is admitting to such shameful/not actually shameful things. Moreover, she is accepting of it, going on to say “I am OK with that awkwardness” and that, in fact, she is learning to embrace, reclaim and redefine that awkwardness.

In so doing she is not only helping herself towards self-acceptance and pride. She, and others like her, are posing a challenge to the rigid norms and ideals that govern society, sociability and notions of what it means to be a fully rhetorical and valuable human being. Stigma and shame are the problems, not autism. It is ableist narratives that need to be fought against, not autism. We need to reclaim and redefine our autistic awkwardness. Is it even awkward (to ourselves, to other autistics) at all? This can only start with and from within ourselves, and expand through coming together as an autistic community.

Autistic people. Autistic humans.

Autistic commonplaces. Austitic community.

Autistic invention. Autistic involution.

Autistic culture. Autistic pride.

Autistic rights. Autistic advocacy.

Autistic rhetoric. Autistic authorship.

AUTISTIC VOICE. AUTISTIC SPEAKS.

Autism Is

exploding brain

What does autism mean to you? Autism is such a complex and multifaceted entity that it defies being captured in any concise, straightforward way. As I was contemplating my answer to this question, I realised just how many opposite extremes can be associated with autism. So I decided to craft a poem that plays on some of these opposing and sometimes conflicting traits. I don’t want to suggest that autistics experience only extremes. That would quickly get very exhausting (and it’s simply untrue). There is plenty of grey area, balance and middle ground too. Nevertheless, here is my take on the extremes of autism.

Autism is…

Hypersensitive / Sensory seeking
Straight forward / Unfathomable
Acute awareness / Unknowing blindness
Fitting and following / Forging your own path
Flying free / Locked in and out
A light-bulb moment / Lost in the dark
Unwavering dedication / Love found, love lost
A million thoughts / A blank mind
Running wild / Wrapped still and tight
Painfully shy / In your face
Obsessive order / Organised chaos
Attention to detail / Overwhelmed by options
Strict rigidity / Spontaneous fluidity
Big bear hugs / Do not touch!
A curious mind / Aversive to change
 Intensely focused / Scatter-brained
Copying and blending / Standing up and out
Vivid imagination / What’s going to happen?
Unfiltered / Walls up
Constant processing / Imminent shutdown
Thirst for knowledge /  Too much information
Feeling too much / Unknown feelings
Hair trigger emotions / meditative peace
I want to be heard / Too much exposure
Anxious and avoidant / Facing your fears
Seeing everything at once / One thing and nothing else
Black and white / A spectrum of colour

Autism is…

One extreme,

The other extreme,

And everything in-between.

What I’ve learned about autism, autistics and the autism world

meiying-ng-71590

It’s been a little over 19 months since my autism diagnosis. Since 19 is my lucky number, I thought I would write a brief update post. Initially I considered writing about the changes that have happened in my life now that it has been over a year and a half since receiving my diagnosis, but I’m not sure how helpful or relevant this would be to others, plus it’s quite personal and convoluted.

Instead, I thought I would write more generally on what I have learnt about autism, autistic people and the autism world. Autism has become a super intense special interest of mine over the past 19 months and I thought I would try to condense down some information into a few points. 

I can find this quite tricky to do, partly because I’m very much in the midst of it all (I’m currently working on researching and writing a book) which can make it hard to see the wood for the trees sometimes. I can also find it hard to consciously/voluntarily access all the information I’ve accumulated, especially in summarised form, despite it surely being stored somewhere in my brain. I’m very much still in the process of building up an overarching framework of understanding. And, for me, this needs to be done from the ground up; building on thousands of little detailed pieces to form some sort of coherent all-encompassing whole – or at least that’s the aim.

That said, here are probably the top 5 things I’ve learnt about autism over the past 19 months or so:

  1. Autism is not bizarre, mysterious or unknowable. In fact, it encompasses an extremely logical, understandable and very human set of ways and responses which are based on a different way of sensing and perceiving the world. Understanding the “whys” of autism (at least at the psychological/behavioural level) simply requires getting to know and having empathy for the differing internal experience of an autistic person.
  2. Autism is not inherently a medical “disorder”, it has been socially constructed as such. Nor is it inherently problematic, though the context we live in (i.e. the non-autistic world) can often make it challenging. Nor is autism an “epidemic”. It has a strong genetic component with autistic traits having existed throughout history, being widely distributed across the population and likely holding considerable evolutionary value for our species.
  3. A person’s autism cannot easily be measured, nor should this be an aim. “How autistic” someone is – i.e. their “functioning” level – is fluctuating, subjective, kind of arbitrary and often misleading. Above all, intelligence does not correlate with the strength of autism or with “functioning”. A so-called “severely” autistic, “low-functioning” individual can have a high IQ (if they have a low IQ then they may have an intellectual disability and this is not autism, despite the fact the two do often co-occur) which is being camouflaged by sensory-perceptual and communication difficulties.
  4. Most definitions and understandings of autism focus on external observable criteria based around social communication and restricted, repetitive behaviours (usually framed as deficits, as in the “triad of impairments”). In reality, it is more accurate, useful and respectful to view autism as being fundamentally about information processing issues stemming from sensory perceptual differences. Of course, a whole host of traits across diverse domains then spring from this, but “sensory” really is core to explaining almost everything about autism.
  5. What can look like hypo-sensitivity is usually the result of hyper-sensitivity. Being autistic means having a more intense perception of the world. Contrary to popular myths, it does not mean being cut off from the world, being immune, insensitive, unfeeling, uncaring, unknowing. It actually means we are a lot more sensitive than most to our environment and to the people in it. The impression we can give of being shut off or out is because we see, hear, feel and sense too much and need to self-protect as a result.

I’ve also learned a bit about other autistic people. Here are perhaps the top 3 things:

  1. Every autistic is different. When you’ve met one autistic… you’ve met one autistic. This phrase (first coined by Stephen Shore, I think) has become a bit of a cliché. But it is so true and sweeping stereotypes still have a strong hold, so it’s worth repeating (and keep on repeating) until people’s notions about autism become more nuanced. We are as different from one another as neurotypical people are. At the same time, just as NTs share certain similarities (based on their shared operating system), so too do autistics.
  2. We can all be at very different places in terms of our understanding of, identification with and feelings about autism/being autistic. Some of us identify very strongly, demonstrating acceptance, even pride, and may feel passionate about the autistic community and promoting autistic rights. Others may harbour negative feelings about being autistic. And there are plenty of people who are somewhere in-between, whether exhibiting ambivalence, disinterest, passive acceptance, or whatever. Being autistic does not guarantee that you know a lot about autism, that you identify with the label or are interested in autism advocacy. These things have a lot to do with a person’s experiences, personality, interests, circumstances, levels of self-awareness, and so on. The degree of identification can also very easily change throughout a person’s life.
  3. Being autistic does not define your personality. Autism does not negate the possibility of any personality trait in a person. It is possible to be extroverted and autistic, even to be very social, spontaneous or highly empathetic and autistic. We have stereotypes for a reason – there are plenty of introverted, solitary and rigid autistic people, and there clearly exists an important pattern between autism and certain personality traits and preferences. But our understanding should not stop here. Anything is possible. Autism is not equivalent to personality, although it certainly has an important influence in shaping it. On a related note, autistics are perhaps more likely to exhibit opposite extremes in behaviour and personality, in relation to one another and sometimes within the same person at different times. Whereas neurotypicals are more likely to cluster around the middle of a spectrum for a given personality trait, an autistic person is more likely to be at one extreme or the other. This reinforces point 1 about every autistic being different. 

Finally, I’ve become increasingly familiar with the autism community and disability rights and politics more generally. The top 5 things I’ve learned:

  1. There’s a lot of misinformation and prejudice about autism out there. Before I’d started to educate myself on these issues, I’d (wrongly) assumed that things might have progressed further forward than they have. For sure, we’ve made huge improvements, but there’s still a long way to go before we have true understanding, acceptance and appreciation, and not simple awareness (which in itself we still haven’t fully achieved).
  2. There is also a lot of fighting and political stuff between the various groups (autistic people, parents, professionals, general public) and perspectives (e.g. cure vs. acceptance) that make up the autism world, and sometimes even within the same groups. Autism is an emotionally-charged topic for a lot of people and can evoke a lot of feelings, a strong sense of urgency and plenty of competitive and desperate behaviour.
  3. The experts don’t know it all. In fact, they have been – and still are – wrong (or at least in the dark) about a lot of things. There’s actually a lot we still don’t know about autism (especially when it comes to basic causes and neurological mechanisms). It is hugely complicated and we should be humble enough to admit when we don’t know and to let go of theories that don’t match up with science or lived experience.
  4. Autistic voices are out there (especially online) and want to be heard. Unfortunately, all too often, autistic people are overlooked as the sources of knowledge, insight and “experts by experience” that we are. We are often excluded from the very discussions we should be central to – because they are about us! “Nothing about us without us” is a popular saying in the self-advocacy movement.
  5. Autistic connection, community and culture are important things. There should be more opportunity for us to develop and engage in these things, both online and in real life. It can often be a lot easier for us to feel understood, to feel at ease and comfortable with ourselves and to feel a sense of belonging with others on the spectrum. But… at the same time, we shouldn’t assume that autistic people will get on just because we are all autistic. Just as we don’t expect all NT people to get on by virtue of being NT. There is so much more to a person than their autism/non-autism. Two autistic people may not gel for a whole host of reasons, just as with any people anywhere. We should be mindful of this and remain open to making connections across the neuro divide. However, post-diagnosis especially, it is clearly understandable if an autistic person wants to focus on getting involved with other autistics – especially if they’re socially isolated, or have had a lot of bad experiences in the neurotypical world. It can be a safe place to start (and to stay for good if that’s what suits them). 

 

Processing emotions post diagnosis (part 2)

Copy of Copy of Copy of Copy of Vantage Points

PROCESSING AN AUTISM DIAGNOSIS:

A road map for overcoming negative thoughts/emotions and focusing on the positive

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Negative thoughts & emotions

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1 – Stigma of autism in society

2 – The reality of many negatives associated with autism

3 – Worry about negative perceptions from others. Possible negative reactions to disclosure.

4 – Sadness at (real or potential) difficulties of being autistic

5 – Shame

6 – Comparisons with other autistic people

7 – Comparisons with neurotypical people

8 – Overplaying the autism factor?

9 – Sense of alienation

10 – Worry about the future

11 – Doubting the impact self-awareness/diagnosis can make

12 – Regret over late diagnosis

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Positive reframing or resolution

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1- Questioning stigma. The value of difference.

2 – Nothing can be entirely positive

3 – People are generally not mean, just misinformed. Most will be positive or neutral.

4 – There are many positives (esp. if you’ve been lucky with your circumstances).

5 – Focus on what’s right for you, not societal norms.

6 – Every autistic person is different. Be empathetic.

7 – You’re not comparing like with like. The norm is highly subjective. The norm can often be problematic.

8 – Accept the feeling (it’s normal) and give yourself time.

9 – There are more similarities than differences. The discovery of a new community!

10 – Reasons to be hopeful

11 – Knowledge is power. Relief, understanding and empowerment.

12 – Potential drawbacks to earlier diagnosis. Gratitude to have found out now at least. (This one can be reversed in cases of early diagnosis.)

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#6

NEGATIVE                                          

COMPARISONS WITH OTHER AUTISTIC PEOPLE

It’s a very natural and often strong desire that most of us have to draw comparisons between ourselves and others. Some are more prone to doing this than others, and it seems that autistic people may actually be more immune to this than most. But this certainly isn’t always the case: many autistic people are prone to making comparisons with others, and some are actually far more sensitive to this than the average person. Personally, I have a pretty strong tendency to make judgements about myself, others and to draw comparisons which then effect how I feel. In relation to other autistic people – whether I meet them in person, watch a video or just hear about them– if they seem “more autistic” than me this can make me feel more at ease and perhaps confident about myself (especially in terms of social abilities). Conversely, if I seem “more autistic” than them, this can often make me feel insecure. This is probably at least partly related to a perceived/actual pressure to appear “normal”.

This is a ridiculous (though understandable) attitude, that I wish I could break out of. It’s not healthy or nice for either myself or the other people I’m judging. And what does it say about my underlying attitude towards autism (or at least “appearing autistic” to others in certain ways)? All I can say is that it clearly results from decades worth of internalised ableism combined with the usually innate human instinct to compare ourselves to others and to want to fit in. I really wish I wasn’t quite so judgemental, because it doesn’t reflect what I really believe and want to feel. I think this is a good example of how we can often understand things on an intellectual level (in this case, “being different is not only acceptable but awesome and valuable”), but not quite on an emotional level (“I want to seem as normal as possible”, “people who look different are weird”) because of years of conditioning, plus the innate instinct.

POSITIVE

EVERY AUTISTIC IS DIFFERENT (AND THIS IS GREAT)

Feeling somehow “better” than other autistic people for being or appearing more “normal” is something I feel really ashamed to admit to – even though (I hope) this is never reflected in my external behaviour, just internal thoughts that I can’t seem to help thinking. Trying to be mindful of this tendency is a good start, and I have got better at noticing and then trying to shift away from it. This can be helped through applying understanding. Learning about how autism works in all its immense diversity helps me keep valid explanations in my mind for the behaviours I witness in others. Applying empathy is really important. People are the way they are, often for very good reason, nobody can really help it, most people are just trying their best with the means that are their own, and so on. It should be easy for me to feel empathy towards autistic people, and generally it is. It can also help to think about how I’d feel if I knew someone was judging me in a certain way. Superficial judgements about people you barely know can end up being pretty flawed, perhaps especially so in relation to autism (where external appearances can sometimes be deceptive).

The judgements I make about others really have nothing to do with them, and everything to do with me. There’s a part of me that is clearly insecure about being autistic or appearing autistic to others. But, I don’t think this reflects what I really believe about being different (at least not on an intellectual level). I think it has to do with emotional conditioning based on years of living in a society where the underlying message is something along the lines of needing to be like and be liked by those around us.

Most important is to keep in mind that every autistic person is different. We all have different experiences, strengths and challenges and this is completely fine and to be expected. Comparing autistic people to each other is not comparing like with like. We are all autistic in different ways, to different degrees, and with vast sets of confounding variables relating to personality, upbringing, life experiences, values, health, etc which get added to the mix. So really these are meaningless comparison we should try to avoid making, or at least make an effort to reframe and detach from any judgements we do end up forming.

#7

NEGATIVE                                          

Comparisons with neurotypical people

Comparisons can go two ways: Viewing yourself either a) unfavourably or b) favourably compared to others/the neurotypical majority. When taken to extremes, these comparisons can lead to feelings of shame and depression or of arrogance and superiority, respectively.

a –

This tendency is at the heart of many of the emotions already discussed here, including sadness, shame and vulnerability among others. It is all too easy to compare yourself to neurotypical people because they are everywhere and most of their values, assumptions, patterns of perception, thought and behaviour are so taken for granted. It can be especially hard for undiagnosed autistics who do not have the all-important explanation for why they are different. See the section on shame for more on this theme.

b –

Comparisons can also go the other way: Considering yourself in a superior light and perhaps having a tendency to judge others negatively. A small minority of autistic people take the pride thing too far, holding the belief that their autism in fact makes them superior to others. They might uphold common autistic values and traits such as honesty, logic or intelligence as sacrosanct and in need of respect and accommodation from others at any cost. (An interesting side note – I know that some autistics with high IQs don’t seem to hesitate from sharing this information with others. This could be interpreted as arrogance, but equally I’m pretty sure most of these autistic people don’t see it this way, not realising how such a comment comes across to others. To them they are simply stating a fact and that is it!) Given the current negative context surrounding autism, we definitely need to be leaning towards emphasising the positives, but sometimes there is a danger of going too far in the other direction. Adopting an arrogant attitude is a coping strategy that Tony Atwood identifies among some autistics, especially undiagnosed. It’s often triggered by past negative experiences and judgements and usually stems from feelings of insecurity.

In relation to myself, whilst I don’t harbour feelings of superiority, I do tend to be quite a critical person (although it’s not often I make any negative judgements known to others – most of the judging stays inside my own head). I’m pretty critical of many aspects of mainstream society and the types of things a lot of people seem to spend their lives doing. This includes everything from eating junk food to drinking (too much) alcohol, buying consumer crap to filling hours watching mindless entertainment. Making unhealthy lifestyle choices (not exercising, smoking), to being preoccupied with appearances (make-up, grooming, fashion). And especially working meaningless or even harmful jobs that are implicated in perpetuating environmental depletion, consumerism, poor health and addiction.

Now, this has nothing to do with autism per se. Except that it does because neurotypicals make up 99% of the population, so when I’m making negative judgements about society, I’m essentially talking about what is a neurotypical society. Of course, I’m not saying that autistic people (including my younger self) don’t engage in the above behaviours, that would be absurd. But sometimes I can’t help wonder whether a lot of these behaviours are a product of neurotypical brain wiring and whether perhaps in an hypothetical majority autistic society we might be able to make some improvements on these things. So essentially, I can be pretty judgemental of mainstream society and many of its “typical” ways, which effectively implicates NTs, especially as some of it seems to stem from arguably quite neurotypical ways of being (for example, strong impulse to do what others are doing without questioning it, or needing high levels of stimulation that can lead to stress, mindlessness, addiction)

Is there something about being autistic that can make a person more or less prone to being judgemental? On the one hand, many autistics highlight that they are remarkably non-judgmental towards others – perhaps because they are simply not wired to draw comparisons or to be competitive in this way. However, this isn’t the case for all and I can see how certain common autistic traits (logic, honesty, black and white thinking, perfectionism, strong morals, etc.) could lead a person to develop a strongly judgemental attitude about what is right and wrong in other people and society more widely.

POSITIVE

You’re not comparing like with like!  The norm is highly subjective. The norm can often be problematic.

Dealing with feelings of inferiority

Whilst not wanting to condone an arrogant attitude, it is helpful to try to adopt a more critical approach as a way to combat negative comparisons. It’s therefore helpful to tap into aspects of what I outlined above: being critical of mainstream society and typical modes of behaviour, whilst avoiding sliding into feelings of superiority.

I’m pretty sure that one of the biggest reasons for my positive attitude towards autism/being autistic is related to how I view mainstream society – its values and ways of doing things. I was schooled in this way of thinking for a good few years, mainly through studying International Development with a strongly critical edge at university. This involved looking at the workings of neoliberal capitalism and how the (hidden/not so hidden) power relations underpinning it are implicated in so many problems in our world: poverty, extreme inequality, environmental destruction, corruption, discrimination, exploitation, violence, slavery, paid slavery (i.e. most jobs?) and arguably mental health issues and stress-related health problems as well. Basically, there are a lot of things about our world that are just plain bad and through my studies and interests I became quite attuned to adopting a critical approach towards describing and analysing why this was. As a result, when it came to learning about autism and how it is situated in society, it was natural for me to apply this same critical mindset.

In many ways, I don’t particularly see mainstream society as worth fitting into. I don’t want to have the typical life that most people have – working a conventional job, living in the suburbs, raising kids, going out to shops or restaurants or bars for “fun”. This is an attitude I already had pre-autism discovery and I’ve found it’s a pretty comforting and liberating attitude one to have. In fact, I had a pretty serious desire to escape it all to go and live in a cabin in the wilderness. And now I understand why. I’m pretty sure I would not feel this way, at least not to the same degree, if I was not on the spectrum.

For me, and perhaps others as well, it can be a positive case of not fitting into something you don’t really care to fit into. (The problem arises of course when there’s sometimes no choice but to fit in order to, say, earn money, or as a means to getting to somewhere you do want to be). Can you argue that a person is disabled if what they’re disabled from doing are things they don’t want to do anyway, e.g. working in an open-plan office, socialising in groups, spending an afternoon in the town centre? (Though I understand perhaps the “disability” is in not wanting to do these things in the first place!)

Alternatively, I can see how an autistic person who has not been exposed to this sort of subject matter, or who is not used to making lots of critical interpretations, could hold a slightly idealistic view of society. They may feel quite desperate to fit in with it and resentful if they struggle to do so – whether that be through having a certain job, socialising regularly or in typical ways, basically wanting to do a lot of the things that society upholds as important. But the norm is very subjective. There is nothing much that is inherently right or wrong (unless you are hurting yourself, others or the planet), we just decide that certain things are right or wrong for social-cultural reasons. And this reasoning can be subject to questioning, because it is not natural, objective, necessarily logical or even delivering beneficial effects in a lot of cases.

I think a critical attitude is a good thing to have and something to be encouraged. The world is wrong in so many ways and we urgently need people who are willing to think and act in ways to try to change it for the better. Obviously this is in no way exclusive to autistics. The world is full of critical thinkers and people choosing to break from the conventional mould. But, in my case at least, I’m pretty sure autism plays at least some role in encouraging critical and divergent thinking and perhaps a clearer perspective on social norms (being more able or willing to question them).

I think there’s an argument to be had that many of the things wrong with the world perhaps reflect NT behaviours taken to the extreme. This is a vast and potentially offensive over-generalisation, but there could be some truth in it – they do make up 99% of the population after all! I think that being autistic makes it more likely that I will question, avoid or take action against certain negative aspects in society – purely because they may simply be intolerable for me to live with personally. Being in some ways on the fringes of typical society means being outside of a lot of the negativity and destruction that goes on. And it just so happens that a lot of this stuff is not just bad for me/autistic people, but bad for a lot of individuals, for the environment and society at large. It could be that most NTs just don’t have the degree of sensitivity that might alert them to the harm that is being done (e.g. with junk food).

It’s interesting to consider a remark made by Nick Walker that working to create a more autism-friendly society would basically be equivalent to creating a more human-friendly society (because we’ve gone too far in one direction in terms of noise, intensity, speed, stress, even connectivity). Being sensitive can be a valuable thing. It’s sort of like the canary in the coal mine effect: Autistic people are generally suffering more from the excesses of society, but this should be read as an alert that there is something wrong with society, not with the (sensitive) canary. If more people were intolerant of things like noise, ugliness, chaos and freneticism, as most autistic people are, perhaps the world would be a nicer place to live in sensory and aesthetically wise, with less stress and other negatives. It’s interesting to consider the hypothetical benefits of a world in which the numbers were reversed (i.e. 99% autistic). I’m not saying NTs can’t or don’t embody many of these values. These are all human qualities. It’s just that autistics, being more sensitive, are perhaps better wired to become or stay attuned to them. Examples of a more autism/human-friendly society might include:

– More macro-level empathy (rather than preoccupation with only an immediate social circle), more quiet, slower pace, less hectic lifestyles, more time for intellectual pursuits, less intense competitive crazy work culture (with no open-plan offices!), less time wasting on (pointless?) socialising (especially the type that even NTs don’t really enjoy, like meetings for the sake of meetings at work), less herd behaviour, less overstimulation, more peace, stronger appreciation for nature, more visual beauty, more empathy for animals, perhaps less pointless economic activity and menial jobs (especially customer service oriented), perhaps less expectations and standards around gender, and more acceptance of diversity and difference?

So we’ve addressed how the norm can be highly problematic and perhaps not worth fitting into, as well as being extremely subjective, open to questioning and amenable to change, or at least with options for escaping and crafting your own alternatives. These are all valuable things autistics may be especially well suited to doing.

Other tips for dealing with feelings of inferiority vis-a-vis the NT majority might include:

– If as an autistic person you were NT instead, it’s true that you would probably struggle less with certain things you currently find hard. But you might also find certain things you find easy as an autistic person much harder as an NT. You would still have issues in your life, they’d just be different ones.

– Remember that everybody has problems. We just don’t know about them as well as we know about our own. People, and perhaps NTs especially, can be very good at hiding their problems. I also heard mentioned (by Sarah Hendrickx think) that autistics can sometimes be prone to forgetting the fact that most people struggle in some way or another. This could be related to social isolation and not having much chance to hear about others personal issues, or perhaps because of finding it hard to focus on the wider context.

– A final point, remember that you are not comparing like with like. A good metaphor I’ve heard some people use (most recently in the fantastic Odd Girl Out by Laura James): An autistic person comparing themselves to a neurotypical person is like a cat judging itself by dog behaviour. We are wired differently. We shouldn’t expect to meet neurotypical standards. Even if we push ourselves to, we may well find that attaining these standards does not make us happy. We can have our own autistic standards that are right for us as individuals.

Dealing with feelings of superiority

Autistic people can certainly be a step ahead of neurotypicals when it comes to certain things, but this doesn’t make us any better than them. We’re all different. We all have our strengths and weaknesses and we shouldn’t use these as a basis for developing criticism and negative judgements towards others. Just as we don’t want the NT majority looking at us through a narrow lens with lots of preconceived notions in mind, we shouldn’t fall into the trap of thinking this way about them either. If we want understanding, acceptance and accommodation, we need to practice these very things towards the non-autistic majority, leading by example if necessary.

We should certainly value and take pride in our strengths, qualities and accomplishments. But we should try to disconnect these feelings from the temptation to make judgements and comparisons with other people. Anchoring your self-esteem to points of external comparison is what leads to feelings of inferiority or superiority. Ideally, when we appraise how well we are doing it should only be in reference to our earlier selves. How we are progressing against ourselves over time – what can perhaps be thought of as a “vertical” comparison, rather than “horizontal” or “diagonal” ones that extend to other people.

What about if a critical disposition or strongly held beliefs, morals and values are causing you to make negative judgements about others, or society more generally? Perhaps try to bear the following in mind. People can’t really help who they are. We are all born with a certain set of genes, personality traits and various predispositions that lead us to develop certain strengths and weaknesses. These are all things that we have no control over, yet which shape us to a significant extent. Our upbringing and to a large extent a lot of our life experiences are largely out of our control. This might sound overly deterministic, and perhaps slightly pessimistic, but in a way it’s quite a freeing notion as it perhaps relieves some of the responsibility we feel for how our lives are going. Whilst I can’t always help judging people for being a certain way, at least I don’t extend to thinking it is their fault or that a certain behaviour even reflects who they are as a person. So much about life is pure chance. If I’d had the circumstances of someone in an unfortunate position (e.g. growing up in a disadvantaged environment) I’d probably be a lot like how they are now. In short, apply empathy/sympathy. Of course, the danger here is with falling into pitying others and perhaps seeing them as “less than” even if you are not blaming them. Ultimately, it’s probably best to try not to judge in the first place. The good news is that a lot of autistic people do seem to be naturally good at doing this!

#8

NEGATIVE                                          

OVERPLAYING THE AUTISM FACTOR – MAKING TOO BIG A DEAL OF IT?

Many autistic people seem to experience a phase (just before, during and especially after diagnosis) of being very focused on autism in a variety of ways. This seems especially common among the late diagnosed and those who may have searched long and hard for potential explanations for their differences. I also get the feeling that this is something that affects females especially. This is perhaps because a lot of autistic females tend to be quite immersed in things like self-understanding, personal development, psychology and many of us are known to develop special interests in ourselves along with other people and the social world more generally.

This affected me in a big way. I’ve developed a very intense special interest in autism – most of the things I read, watch, write and think about are autism-related. I’ve increasingly become noticeably “more autistic” in many ways (for a variety reasons, of which diagnosis is probably one). I’ve become emotionally invested in the autistic identity and community. I sometimes struggle to imagine a future where I’m not completely immersed in my autism interest or focused on the fact I am autistic. And when I look back on the past, I wonder how I was able to go about life without knowing such a fundamental thing about myself.

You could easily argue that I am overplaying the role of autism in my life. Some people around me have definitely implied they think this is the case. To an extent, I agree. It’s almost 18 months since my diagnosis and I’m as immersed as ever. A part of me wonders if this is “normal” (for an autistic person) or even if it’s good for me. There are some aspects that are open to potentially negative interpretation: narrowing my field of attention, neglecting former interests and other parts of my identity, becoming out of touch with current events due to lack of interest, irritating people by talking too much about autism, perhaps creating self-fulfilling prophecies in terms of autistic traits, having a bias for wanting to connect with autistic over non-autistic people, and so on. On the other hand, deep down, I also suspect that this is probably just a phase and I am slightly afraid of what my life will look minus the intense focus on autism. I imagine the space will eventually be replaced by another special interest, but at this point it’s hard to imagine anything else ever consuming my attention as much as autism is currently doing.

On a related note, I’ve experienced some confusion over how big of a deal all this should be – being diagnosed, being autistic in an NT world, and the potential impact I should expect from this knowledge. On an intellectual level, I know it is probably best to simply accept how I am feeling and dealing with my diagnosis without questioning things too much. But for whatever reason a part of me wants some sort of objective perspective on just how important this is or should be. Am I blowing things out of proportion? Or alternatively, am I not making enough of it? I think part of my initial confusion stemmed from the reactions of those around me which sometimes felt slightly underwhelming. This made me doubt my true feelings of “this is huge”, because if they didn’t (seem to) see it as a big thing, then perhaps my perspective was a bit skewed.

All this can be quite tricky to unravel. My autism diagnosis is probably the most important, intense and fortunate thing to have happened in my life (and perhaps that will ever happen). And yet… things are more or less the same as they’ve always been (besides a new obsessive focus on autism). It can be quite a paradoxical thing to live through. On the one hand, everything has changed (and things will never be the same again). On the other hand, nothing has really changed – I’ve been given a label and access to information, but I am still the same person I’ve always been and my day-to-day reality remains largely unchanged. Ultimately, I think the psychoemotional impact of a diagnosis can be big, especially in the short-term (see #11), whilst the more concrete practical changes could take a while to materialise. We also shouldn’t assume that we’re even aware of precisely how our diagnosis is impacting us. Some changes simply go unnoticed, taking place at very abstract or invisible levels. Also, we don’t have the counterfactual to allow us to compare how our life might have been if we’d continued undiagnosed. This means it can be easy to take things for granted, simply assuming this is how things were always meant to play out.

POSITIVE

THE FEELING IS NATURAL AND LEGITIMATE. GIVE IT TIME. THINGS WILL LIKELY NORMALISE AND BALANCE OUT. AND IF THEY DON’T, THIS IS FINE TOO – REVEL IN YOUR PASSION FOR ALL THINGS AUTISM!

None of this is necessarily negative. Quite the contrary, I think it’s perfectly natural, valid and to be expected. Especially for late diagnosed people who may feel they have so much to learn in order to make up for the “lost” time of living in the dark without the autism knowledge.

I think the key thing to remember is that there is no “should”. Everyone will react to a diagnosis in their own unique way and this is entirely legitimate. You’re perfectly entitled to feel exactly how you feel. Try not to question it too much, even if the reactions of those around you seem out of sync with your own. (As a side note, having people suggest to you that you should tone down your focus on autism – or any special interest for that matter – will likely have the opposite effect and can feel threatening, encouraging the person to feel more invested in their new identity and interest.)

For those concerned they are too focused on autism:

– Think about the benefits and drawbacks of your intense focus. If you are enjoying yourself and seem to be getting something out of it, then great, just accept it for as long as it lasts. Perhaps it isn’t something you can easily control anyway.

– Whilst this certainly isn’t something that happens to everyone (some people don’t care to learn anything about their diagnosis whatsoever, whilst there are also plenty of people in between the two extremes), it is quite a common trajectory to experience. In the first few weeks, months, even years following a diagnosis, it’s quite common to feel consumed by the interest and identity.

– Keep in mind that there is another step that people often progress onto following an intense focus on autism. In fact, autistic psychologist Christian Ferrer-Stewart has mapped out the various progressions through autism discovery-diagnosis-identification-acceptance-growth. I’ve included the phases he outlines just below. But note this is a simplification and in reality it’s probably quite likely for a person to encompass aspects from more than one stage at any one time. Watch his lecture to see the original slides (they appear towards the very end of part 2) for more detail.

  • Conformity
  • Dissonance
  • Fundamentalism <- intense interest phase
  • Resurfacing
  • Self-integration

– The book, Nine Degrees of Autism, is another resource that outlines the autism “journey”. The final, ultimate, phase is deemed to be a place of greater equilibrium between autism and other aspects of your identity and interests.

– Similarly, French autistic advocate, Julie Dachez, describes the evolution of her identity in relation to autism with two Venn diagrams in this blog post.

For those fearful about the prospect of moving on and losing interest in autism:

– We can get used to feeling comfortable focusing on and identifying so strongly with autism (or any special interest for that matter). It can feel very securing and we may experience a range of positive or intense emotions reliving and immersing ourselves in the sense of understanding, relief, validation and community we’ve gained since being diagnosed. This is fine as long as it is serving us well, but we might want to consider some of the potential drawbacks as well (see section above). Autism isn’t all that we are. There are multiple aspects of our identity that might be equally worth exploring. Especially if we had a variety of different interests and activities prior to diagnosis which have since become neglected, we might want to try gradually leading ourselves back to some of them.

– Change is hard. Especially with something like this. But remember that it doesn’t have to be either/or – either obsessed with autism, or completely cut off from it. We can find a healthy middle ground if we feel that is best. But again, if you feel it is right and beneficial to be so strongly focused on autism (or you just can’t help it!), there’s nothing inherently wrong with what you’re doing. You should not feel ashamed or guilty. Autism is a massive part of your identity. It’s who you are as a person. Additionally, it happens to be an issue that requires a lot of work to understand, accept and accommodate, both at the individual and societal levels. It’s a valuable thing to focus your energy on. At the end of the day, you shouldn’t let anyone dictate to you how much or how little you focus on and invest in autism as an interest, identity and priority in your life.

#9

NEGATIVE                                          

SENSE OF ALIENATION

This point is in some ways related to the one above, because it is something that may result from an intense focus on or “overplaying” of the autism factor. There are two main factors surrounding a sense of alienation that I noticed in myself and that others might relate to as well.

a –

Now that I know for certain that I am different from others, this knowledge can sometimes serve to make me feel a bit shut out, whether in reality or just in terms of how I perceive things in my head. Most autistic people will have felt this sense of alienation before diagnosis as well, but having the definite knowledge will likely cement this feeling of being different and, for some, this may not always be an entirely positive thing.

It can affect how you view the non-autistic majority. I occasionally have a tendency to “other” NTs. When I hear about or watch an NT (for example, on TV) I might think they’re being a certain way/doing a certain thing because of the fact they are NT and I might also think that whatever it is they’re doing may not work for me because I’m not NT, that I wouldn’t be able to cope with or enjoy the same things as them for whatever reason. It can make it difficult to relate to people’s experiences. It can lead me to assume that things will be different for me, that they won’t work out in the same way, especially when it comes to what might be regarded as quintessentially neurotypical things.

Sometimes I wonder whether knowledge of the difference could make me more inclined to self-doubt when it comes to my perception or understanding, or to worry about a potential breakdown in empathy in either direction. It can also be slightly scary to consider and witness how the majority perspective is (understandably) so taken for granted. Autism, along with many other forms of difference, is simply not on most people’s radar. When I am learning about something, there won’t be a caveat stating that this information is presented by and for neurotypical people and that it might not apply to autistic people in quite the same way. Say I am reading a book that is explaining some aspect of human psychology or providing self-help tips. It will naturally be focused on and addressed to NTs without any realisation or statement that this is the case. The funny thing, of course, is that prior to my autism discovery I naturally assumed that all information everywhere applied as much to me as to any other person. It’s only post-diagnosis that I question this, remembering that I am part of a neurological minority that is not necessarily accounted for in universalistic accounts about human life. So, yes, this can feel slightly alienating.

But it’s entirely understandable to feel this way. To suddenly find out that the way you experience the world is not the universal way, can be quite something. No two experiences are the same, of course, including between NTs. Everyone is different. But some are more different than others. This slight sense of alienation is also likely part of the reason why I am immersing myself in the autistic community, where my perspective and the perspective of those like me take centre stage.

b –

This leads me onto the second point: Frustration, slight sadness and even occasional fear/uncertainty at a) not being able to live the majority experience and, moreover, b) not being able to know about the true extent of the autistic/NT difference (in general, and for me personally). In other words, just how different is different? I find the latter point particularly frustrating because it’s literally impossible for anyone to be in a position to find the answer. No one person can live both perspectives. I’m perfectly happy with the fact I experience the world differently, but this doesn’t mean I’m not curious to know what the alternative is like, especially when it is so ubiquitous. Sometimes I think it would be incredible to switch brains/realities with an NT for a day (and another autistic person, for that matter). I imagine I’d learn so much and it would likely help put my own differences in proper perspective. I find it can be so easy to forget the extent of my differences, or even the fact that I’m different at all. To me, this is normal and it’s hard to imagine any other way of being. This is the case for NTs vis-à-vis autistics as well. We can all try hard to empathise, understand and listen to each other’s experiences, but ultimately we can never truly know what the “other” side is like and it can be all too easy to take our own perspective for granted.

POSITIVE

THERE ARE FAR MORE SIMILARITIES THAN DIFFERENCES. PLUS, THE ALL IMPORTANT DISCOVERY OF A NEW COMMUNITY

As much as it’s important not to underplay the differences that being autistic makes, it’s also vital not to lose sight of the many, many similarities that bind us all together as human beings. There are, in fact, far more commonalities than differences between all of us, including between neurotypical and neurodiverse people. We do all share core human abilities and desires, including things like empathy and the need for security, connection to others and a sense of belonging.

Some interesting things have been written about the connection between autism and being human (e.g. Dan Goodley’s chapter in the book Rethinking Autism). There are societal discourses and practices at play that serve to dehumanise autistic people, especially in the case of strong autism. It’s especially important that we work to overcome fundamentally flawed and dangerous ways of thinking that equate autism with something other or less than fully human. Whilst autistic people are different, we are just as human as anyone else. Clearly, there are different ways of being human. The title of Dr. Barry Prizant’s book about autism sums it up well: Uniquely human. Some have suggested that autistic traits simply represent extremes of the human experience. There is probably nothing that autistics experience that NTs don’t also experience. The difference lies with the intensity, frequency and duration of certain experiences, along with their unique combination. Autistic experience is not outside of human experience. In a way, it’s simply a more intense version of being human.

On a semi-related note, it’s important to remember that the environment surrounding an autistic person is of paramount importance. If it is conducive to that person’s needs (usually low stimulation levels) then that person will feel calm, well-regulated and be able to function at full capacity. Autistic difficulties like sensory overload and “challenging behaviour” won’t be an issue. It’s likely that autistic people in such a state feel comfortable, natural, like themselves and in their right mind – perhaps much how an NT person feels when they are also well-regulated. It just takes more for an autistic person to be able to achieve this on a consistent basis, making it a rarer occurrence. This shows that autistics aren’t fundamentally flawed, incapable of achieving a comfortable equilibrium in terms of levels of stimulation and regulation. The issue is that we are extra sensitive to our environment and the world is not designed for us with this in mind.

Additionally, for those diagnosed with Asperger’s or who experience comparatively “mild” autism, the points of similarity with NTs are, of course, especially strong. If you are struggling with feelings of alienation it can also help to think about the millions of people in the world who are different from the norm in so many various ways. It’s by no means rare to feel alienated. Most “normal” people feel it to an extent at various times as well.

By far the best thing to do to counter these feelings is to engage with the autistic community. The opportunity to make connections with other autistic people, whether in real life or online is probably one of the best things to come out of autism discovery/diagnosis. So many people talk about the importance of finding your tribe in life. And now you have a defined and diverse group of people who share your perspective, who you can seek out, share with, learn from, offer advice and potentially develop lasting relationships with. Even if you don’t make any active efforts, merely knowing and thinking about the fact that there are so many others out there similar to you and who you can potentially connect with at any time (especially online), is a great comfort.

#10

NEGATIVE                                          

WORRY ABOUT THE FUTURE

Worrying about what is yet to come and the inevitable occurrence of change and unpredictability is an extremely common, if not core, autistic trait. Ironically, as with many autistic traits, the stress and fear involved in dealing with change tends to be exacerbated during times of stress (often involving change itself) making it even harder to deal with change just when you need to be at your strongest. Diagnosis is often a major event in a person’s life and can trigger a whole host of changes, whether voluntary or involuntary. Yet the overwhelm many autistic people feel during the diagnostic journey can make change an even scarier prospect than ever and harder to deal with if and when it does happen. I should note that I’m talking about relatively big “life” changes here, not smaller-scale everyday changes that might occur in a daily routine. Another note: This section might seem a bit doom-and-gloom, but I think it’s also one of the most important points, reflecting one of the biggest challenges people face post-diagnosis, and just in life generally.

There are perhaps two main areas to consider in relation to worrying about change in the post-diagnosis phase:

a – Worrying about the future because this is what a lot of autistic people (and people in general to varying degrees) tend to do. This may be exacerbated by experiencing stress, increased autistic traits and overwhelm from processing a diagnosis.

b – Worrying about your future now that you know you are autistic. Now that you have the knowledge, you might experience doubt, confusion and fear about what being autistic might or might not mean in terms of your future life.

I’ll focus here on point b: how the knowledge that you are autistic might affect your relationship with change. There are perhaps two main aspects to consider within this. First, worry about the practical and emotional reality of living through actual change. Second, the impact of diagnosis on your psychological state and how this might be affected in terms of your confidence about facing the future and your ability to initiate important changes.

On the whole, I am definitely much more scared about the future and the prospect of changing my current situation than I have ever been in my life. This is because of a mix of a) and b). Having the autism knowledge has made me both more and less scared about the future. But, overall, I am a lot more scared and this is in large part because of a). I seem to have become noticeably “more autistic” in recent years which is affecting my perceived (and perhaps actual) ability to initiate and deal with change (via the impact of increased sensory issues, anxiety, EDF, etc).

Having the knowledge I am autistic itself has also served to make me worry more about the future, in some of the following ways:

– Autism is a serious thing. The challenges it involves are real, significant and can often have a debilitating impact on a person’s life. Prior to being diagnosed, I suspected I was a little different to others and was certainty aware I had slight difficulties in some areas. But now I know the true extent of the difference (though this is still an area of confusion – see #8) and of the potential challenges I could be facing in future. Of course, it’s debatable whether this is a good or a bad thing, and every person’s reaction will be unique (see #12 for more on this is).

– Fear about the future can take the form of worrying that it may be harder for you to achieve certain things than it is for most people, especially around big milestones or life events, like employment, marriage, parenting or things like travelling abroad, attending big events, meeting new people, and so on. Of course, plenty of autistic people do all of these things and more with great success, but they can also be a source of struggle  and uncertainty for many others as well.

– The autism knowledge has provided me with a clearer realisation that I probably need quite a specific set of criteria and circumstances in order to maximise my functioning and happiness. This includes around work, living environment and the amount/type of people I have around me. This applies to everyone, of course. But being on the spectrum, your needs might be quite specific. You might only be able to tolerate a very quiet living environment. Or you might need to be self-employed, working alone from the comfort of your home. It might be harder to find people you click with. Ultimately, it may be harder to find or achieve what you want, as well as to have your needs understood by those around you, simply because your requirements may be more specific or niche than for most. (As a side note, if you harboured the belief or desire that you would one day magically feel “normal” or become able to cope in ways others seem to, a diagnosis can put these fantasies and hopes to bed. It can be quite common to experience this sort of future-related grief.)

– Then there’s the worry about the negative repercussions you could face (especially in terms of mental and emotional health) if you do struggle to get your needs met. This fear may be fed by the knowledge that many autistic people are indeed encountering difficulties in life and are more vulnerable across the board to things like unemployment, difficult relationships, poverty, bullying, abuse, trauma, loneliness, addiction, etc. No person is going to feel good if they fail to achieve what they set out to, fall into difficult circumstances or can’t seem to fulfill their own or others expectations. But negative feelings and reactions can be heightened on the spectrum, or at least harder to manage and resolve, especially in the absence of appropriate support. Everything is more intense, so the lows can be especially low. Having to deal with unfortunate life circumstances can be especially hard on top of the basic sensory, social and executive functioning issues most of us live with as a matter of course. Moreover, experiencing negative circumstances and associated emotions will likely serve to intensify our more challenging autistic traits.

So, to sum up, what could be the psychological impact of knowing you are autistic in terms of confidence facing the future? It could go one of three ways (or perhaps a mix of the various ways at different times).

– Positive: Increased confidence vis-à-vis the prospect of future change. You may feel more ambitious than ever and feel the need to push yourself harder than you would otherwise. It’s possible this could be fuelled by negative emotions such as anger or regret. Alternatively, if you feel you’ve already achieved a fair amount of success in life, you could well feel inspired to keep pushing further and harder, spurred on by the feeling that an autism diagnosis can only help you in your efforts. Some may also feel the need to prove themselves, even to make a positive example of their life. This could be principally for their own benefit or it could be to prove a point to others – that autistic people can achieve “normal” things, or great things. There can also be a danger of being overambitious, and potentially pushing yourself too far, although this is perhaps less likely assuming you’ve developed greater self-understanding post-diagnosis. See the positive section, just below, for more.

– Neutral: No change in how you feel about or approach the future.

– Negative: Reduced confidence when contemplating the future and reduction in perceived and/or actual ability to initiate or cope with changes. Awareness of weaknesses, limitations and potential difficulties may become heightened in your consciousness. You may come to expect difficulties, affecting your state of mind, shaping expectations and potentially even leading to the creation of self-fulfilling prophecies. Some raise the issue of using autism as an “excuse” (whether a “valid” one or not) even if only at a subconscious level. The expectations of those around you could shift downwards as well. The result of all this could be an attitude that is perhaps too cautious and conservative, a lowering of expectations and reduced confidence to confront fears.

It can be confusing to think about what can or should be changed, to what extent, and how to go about it. Where do we draw the line between what we accept and embrace about ourselves and what we might want to change? Should we expect for expectations to be adjusted post diagnosis, and in what direction? How are you supposed to know how much you can deal with (especially if this seems to fluctuate a lot over time depending on energy, health, sensitivity levels, recent events, etc.)? If you’ve become more fearful about making big changes is this because you now have a more realistic perspective – the right perspective – on what will likely work or not work for you? I know for myself that pre diagnosis I was perhaps a little naive and overambitious in some of my plans. Has my autism diagnosis helped me realign my expectations for the better, or am I now being overly cautious? These are all important and potentially confusing questions that will probably take time to work through. At least being aware of the potential issues around thinking about, initiating and dealing with change is a good starting point.

I should add that it’s not just fear that is the issue when it comes to autism and change. There’s often a more fundamental mechanism that is at least partly responsible for the anxiety. A lot of autistic people find it really hard to think about the future. We can have issues with social imagination, making it hard to visualise what we want, to assess whether it is realistic, and to consider various possibilities and alternatives. Many of us also find it hard to plan, initiate and live through change because of executive dysfunction and an associated reliance on routine and need for sameness.

POSITIVE

Reasons to be hopeful about the future

The potential for positive change:

Following diagnosis, some people may experience increased confidence at the prospect of making changes. Diagnosis can serve as a great catalyst for positive change. For some, it can be the trigger they need, perhaps have been waiting for, to set in motion much-needed changes in their life. Some may feel suddenly hopeful and excited about the potential difference that having a diagnosis could make. Having the autism knowledge can serve to increase self-understanding and awareness around your needs and preferences, hopefully increasing your ability to anticipate and perhaps avoid potential future difficulties. It can give you are a clearer perspective on what you might want or need in life. See section 11 for more on how an autism diagnosis can help when it comes to approaching the future with greater confidence.

Helping with the worry:

I don’t have much advice to give on this, because it’s something I’m still living through and struggling to deal with. All of this can be very confusing to work through and may take some time. I will say though, from experience, the longer you put off thinking about or making changes, the harder it seems to become!

To help inspire confidence about the future it can help to have a think about some of the positives you may already be working with (besides the benefits that an actual diagnosis can bring) as a basis for making further improvements in your life. This was partly covered in part 1 and basically comprises a list of all the thing you have to be grateful for or which are of help to you in your life. For me they include things like:

– A positive upbringing

– Loving and supportive family

– Having avoided many of the negative experiences commonly experienced by autistic people, e.g. bullying, mental health issues, difficulties at school, behavioural problems.

– Certain personality traits – e.g. conscientious, introspective, critical, hardworking, focused, resilient.

– Certain strengths and abilities

– Certain ways of being intelligent (there are many different ways for everyone)

– Strong morals and values

– Having had quite a few varied and interesting life experiences – moving around a fair amount, completing two uni degrees, and travelling abroad (including to some exotic and unlikely places for relatively long periods). Moreover, having coped pretty well up to now with some of these challenges, avoiding any major incidents (even if only out of sheer luck at times).

– Being female? It’s perhaps interesting to consider the impact of gender on being autistic. In some ways it can be easier for female autistics, but in other ways definitely not.

Making your own list could be a good place to start when it comes to building confidence about the future and your ability to make the changes you want to.

#11

NEGATIVE                                          

DOUBTING THE POWER OF KNOWING YOU ARE AUTISTIC

Following on from point 10 (potential confusion around just how important an autism diagnosis actually is), there can also be some doubt and disillusionment surrounding the value of having the knowledge in the first place. How much difference does it, or can it, really make?

Especially in cases where there seems to be little post-diagnostic support in place (often the case for adults), it can be easy to doubt the value of the process and the knowledge you’ve acquired. Perhaps you harboured high hopes that things would magically improve through getting a diagnosis. It’s understandable to think that a diagnosis will help, but sometimes we can have overly high expectations. The post-diagnostic period can be experienced as quite anti-climactic in some ways. People may not react how you were expecting them to (they may even express doubt about the diagnosis). There may not be any suitable services (therapists, support groups, etc.) available in your area or any clear way forward.

Above all, simply knowing you are autistic in itself is not really going to change anything in actual concrete terms. Many of the difficulties associated with autism are real and often intrinsic. Simply knowing about them isn’t going to make them go away. Even if you take the time to understand your challenges and put in place appropriate coping strategies, this doesn’t necessarily guarantee improvement. It can be a time of feeling a little confused, lost and even abandoned if no immediate support or obvious pathway presents itself.

It’s usually the case that changes (at least not big changes or positive changes of the sort we really want to see) don’t magically happen. We need to actually do things to make them improvements in areas like living situation, relationships, work, finance, health etc. This is often hard, for anyone, but especially for autistic people potentially struggling with issues around anxiety, social imagination and executive dysfunction. Following a diagnosis, we may or may not be presented with opportunities to help us work towards any changes we feel we want. If we are, then we need to be proactive about pursuing them. If not, then of course it’s even harder, and we need to make our own concerted efforts to work towards where we want to be. This can be a hard thing to do if we are feeling overwhelmed by the whole diagnostic process and its aftermath.

POSITIVE

KNOWLEDGE IS POWER

There are perhaps two main factors that point towards the power of autism discovery and diagnosis. First, diagnosis is very often an essential starting point for all sorts of potentially positive concrete changes to occur – it may just take a lot of time and energy to arrive at them. Second, the psychoemotional changes can be very great and beneficial, though these can easily be overlooked by yourself and others.

True, the power of knowledge in and of itself is limited. But it is also an essential starting point, a crucial building block for what (hopefully) comes next: understanding, accommodation, acceptance, growth, fulfilment. Without knowledge, then none of these things are really possible. At the very least, lacking knowledge makes these things harder to achieve and a lot more subject to chance.

It’s important to remember that diagnosis is only really the beginning of the journey (though it may not feel like it by this point!). It is of pivotal importance, but by no means an end point. We should take the long view and remember that big, important changes can take months, if not years, to unfold. Change is often incremental and certain changes (especially in terms of how we are feeling) can happen without us even really noticing. It takes most people a long time to figure out their lives, many never quite manage to get there. We shouldn’t rush ourselves, especially if we are feeling sensitive, vulnerable and overwhelmed by the prospect of change. Try not to be led by a sense of urgency (unless it seems right to do so) and give yourself the time you need. This will reduce stress and probably maximises the chances of making the best decisions.

Even if some of the more concrete changes you hope to experience aren’t yet unfolding in your life, there are very often important positive internal changes that emerge post-diagnosis (though these too may take time, depending on the individual). Moreover, it is these that will then form the basis for more of the “real”, external, observable change that might unfold later. I’ve already mentioned a lot of these more abstract shifts in thoughts and emotions throughout this blog series. To sum up three big ones:

Self-understanding – Being able to accurately describe and, all importantly, explain why you are how you are is foundational. Developing increased self-awareness and understanding puts you in a better position to make sense of your past and present, perhaps helping to work past emotions like regret and shame, replacing them with relief, validation, even pride. It also enables you to better identify your strengths and weaknesses, along with your needs, preferences and desires, resulting in a stronger sense of who you are as a person.

Understanding from others – The people and environment that surround us are of crucial importance, especially for autistic people who are so sensitive to these things. If the people around us display understanding, acceptance and appreciation, working with us to adapt interactions and the environment according to our needs, this makes a huge difference. It’s simply crucial in determining outcomes.

Empowerment – When you combine the above two factors hopefully what you get is empowerment: the ability to successfully identify, pursue and enact a range of self-determined changes, and to be supported in your efforts by those around you. Whilst none of us can have total control over our lives, empowerment entails having the knowledge about ourselves and others to more accurately assess the potential outcomes of various options, as well as the resources to shape our own life accordingly.

#12

NEGATIVE                                          

REGRET AT NOT KNOWING EARLIER

This one is for all the late diagnosed autistic people out there. Many of us experience feelings of regret, resentment, even anger at the fact our autism was not identified earlier. This might be directed at ourselves (for perhaps not having taken our issues seriously enough, to not have done enough to find out more or seek help), but more likely it will be directed towards various professionals (especially if they were specialists who misdiagnosed who really should have known better), and perhaps at our parents for not picking up or acting on early signs. There can be a strong feeling that life would have been better if you’d known earlier and a tendency towards blaming yourself and others for having missed the signs (presuming they were there, of course).

In my own case, prior to being diagnosed, I’d never before seen any sort of medical professional besides my GP and never about mental health issues or really anything that could have potentially been linked to autism. So blaming professionals doesn’t factor in for me. I did, though, feel a little resentful towards my parents after they told me that they’d vaguely speculated I might be on the spectrum when I was in my late teens/early twenties. But it’s not easy to be properly annoyed at them for this. They clearly didn’t have enough reason to take the possibility seriously. If there had been significant issues that were more outwardly visible, I’m sure they would have taken action to broach the subject with me or to approach professionals. More generally, I do feel a bit of regret that we never really talked about some of the social issues I was experiencing. Perhaps because I hid them quite well (even from myself?), or because they didn’t really see my withdrawn nature as a major issue (they are a lot like me in many ways), or because they simply assumed I would outgrow it with time. It would have been a good idea to have opened up more and my Mum did later acknowledge that it was a mistake not to have done so.

One very common reaction post-diagnosis is to wonder what your life might have looked like if you’d found out earlier. Would my life be any different? How different exactly and in what ways? Would things have been better, or perhaps worse? It’s all too easy to let your mind be plagued by all the possible counterfactuals, especially in relation to negative experiences that might have been avoided or handled better with the autism knowledge.

Potential benefits of an earlier diagnosis and reasons for regret might include:

– Greater self-understanding, potentially helping to alleviate feelings such as confusion, shame and self-blame. Perhaps better self-esteem and confidence as a result, as well as a greater awareness and appreciation of your strengths and abilities.

– Potentially avoiding mental health difficulties, or at least being better positioned to get appropriate support.

– Opportunities to clearly identify and thus potentially work on improving or seeking help with areas of difficulty, such as social skills.

– Sense of identity and community. Opportunities to learn from and connect with other autistic people.

– Increased understanding from others, including family, teachers, lecturers at university, employers, colleagues, potential friends, even strangers.

– Better decision-making based on greater understanding of your needs and preferences, and potentially avoiding negative experiences around work, environment and relationships as a result. Examples for myself include: I would not have set off on a volunteer project with a group of 20+ people as part of my gap year (I would have opted to do something alone or with one or two others instead). I would have made a career choice purposefully designed around seeking a conducive work environment, possibly in an area where it’s easy to be self-employed, or around a special interest. I would have been more aware of my need for a quiet, calm living environment.

Overall, I feel that regret is a fairly strong emotion in me. Like most people, I think I would have benefited from an earlier diagnosis. But, interestingly, not too early. I don’t think much would have changed if I’d been diagnosed at primary school (this would have been pretty unlikely anyway in the 1990s, and even if I was primary school age today I think there’s a good chance I could still slip through the net). If I could pick an ideal time for me it would be in my mid to late teens, around 17 or 18. I was starting to become more socially isolated from my peers around this time. This is a crucial period in a person’s life and I think having the knowledge would have set me up well before taking a gap year and going on to university (presuming I would have still chosen to do these things). I also think I was mature enough at this age to have been able to deal with a diagnosis fairly well (though probably not as well as I have now, in my late twenties).

POSITIVE

POTENTIAL DRAWBACKS TO EARLY DIAGNOSIS. PLUS, GRATITUDE TO HAVE FOUND OUT NOW AT LEAST.

Try to feel grateful that you’ve at least found out now. Some people don’t find out until really, really late, in their 50s, 60s and beyond. Plenty of people never find out at all. Think of all the autistic people of the past who lived before autism was even a recognised concept. Or the millions of people around the world, especially in developing countries, who will never have access to the knowledge or expertise that could potentially lead to a diagnosis. Whilst it should be our right to have access to diagnosis and self-knowledge, these things also clearly need to be viewed as privileges when you look at the bigger picture. Not every place has adult diagnostic services, even in the UK or US. Not every professional will understand autism in its diverse presentations or be willing to diagnose it. For others, there can be significant financial or personal barriers to pursuing a diagnosis. So try to feel grateful that you do have a diagnosis now at least. You may also feel a sense of pride and accomplishment… at having gone through the process and opened up about sensitive topics to various professionals and othersn your life…. at having been right about yourself… at the fact you are autistic!

There is a virtually unquestioned assumption in autism circles that early diagnosis and intervention is always better. This may well be the case. But there are some who argue otherwise (I’d recommend the book Rethinking Autism for more on this), as well as those emphasising the power of neuroplasticity and the notion that development is truly life-long. There are also potential drawbacks that can result from a diagnosis, perhaps especially at a young age. Of course, outcomes will depend to a large extent on the circumstances around the individual, how others react and the appropriateness of the support they receive.

Potential negatives of (early) diagnosis include:

– The autism label still carries with it a degree of stigma. While a diagnosis provides an explanation that can help prevent bullying and foster tolerance, it can also do the very opposite, serving as fuel for bullies to target or exclude the autistic person.

– There is the potential for feeling defined and perhaps limited by an autism diagnosis, including both in terms of how you view yourself and how others view you. The shaping of expectations can be a big thing. Your own expectations for yourself might change. With knowing you are autistic, you might not have thrown yourself into certain situations, including things that turned out positively. Others may lower their expectations of what they think you can achieve, shaping opportunities and development accordingly. All this can be entirely inadvertent and well-intentioned. It can be almost instinctual, stemming from an understandable desire to want to protect the person.

– You might have experienced some of the negative emotion that can be directly linked to knowing you are autistic (though these are often experience by the undiagnosed too, just in a different way), including sadness, sense of alienation and worry about the future.

– Disclosure can sometimes be a tricky issue to deal with.

– Some help can be unhelpful, even damaging. Just take a look at some of the negative accounts of ABA by autistic adults who have undergone such “treatment”. Not all professionals understand autistic people or know how best to help us. Others are simply overworked and under resourced. Being an unidentified autistic, there’s no chance of being subject to potentially stressful, even damaging “autism treatments”.

– Your sense of self will not have been defined by autism. This could have both good and bad effects. On the positive side, it means you are not at risk of internalising the negative (and usually inaccurate) discourse around autism, relating to disorder, deficits, functioning labels, or worse, disease, mental illness, epidemic, tragedy, etc. You might not have even recognised yourself as being that different from others. Speaking for myself, I still tend to forget that I am actually quite different from other people, that I am in a neurological minority, that I am on a distinct developmental pathway and technically considered disabled. Whether or not this is a good thing, it clearly stems from the fact I spent well over two decades (including the most impressionable period of my life) living without thinking any of these things about myself (and habits die hard).

– Being late diagnosed means there’s a good chance you actively went out to seek a diagnosis. In some ways this is perhaps better than a diagnosis being imposed on you whether or not you want it or are ready for it. It means you have more control over what is happening to you. If you go out looking for a diagnosis, it means you are pretty much choosing to identify with autism, that you perhaps want to embrace it, or at least that you are ready to hear it.

A few other points that may help with feelings of regret:

Remember that having a diagnosis isn’t necessarily as powerful as you might think. After all, it is only a word, a label, a concept. Whilst it can be extremely helpful, it doesn’t change who you are, what you struggle with or necessarily even enable you to change certain things you might want to.

Another factor that applied to me, and which might apply to others as well… Being quite an introspective person, I already had a pretty good understanding of my personality, strengths, weaknesses and needs and had accepted these facts about myself. Diagnosis certainly helped a lot, but it didn’t give me with a huge amount of new information about who I am as a person. What it did provide, of course, was an explanation, validation and potential ways to help. Diagnosis might be less of a revelation for those who already have relatively good levels of self-understanding. You don’t need a diagnosis or the knowledge you are autistic to be able to realise a lot of stuff about yourself and what might be best for you.

If you’ve been lucky enough to avoid too many struggles growing up undiagnosed, then your sense of regret will be greatly reduced compared to someone who clearly would have benefited from the knowledge. If you have managed to avoid accumulating too many regrets, try to be thankful about this. Equally, if you feel you’ve achieved a good amount of success in life then you should definitely take pride in this. Not from the perspective that you are autistic so achieving things is harder and therefore more worthy of praise than it would be for an NT (which is sliding into inspiration porn), but from the perspective of being undiagnosed and therefore having lived potentially confused and unsupported.

Think about the benefits associated with finding out at the precise time you did. Perhaps your diagnosis came at a really useful time in your life such as an important cross-roads where you needed to make a major decision. Perhaps it helped improve a relationship or a work situation at just the right time. If nothing else, being older means having greater levels of intellectual and emotional maturity to process the diagnosis in a healthy and useful way. I think my age played a positive role in how I have reacted to my diagnosis. I’m not sure it would have been quite the same if I’d been younger, especially if it had been before the internet with all the information and support that is available now via the online autism/autistic community.

Overall, I’d say it’s pretty likely that your life would have been different, perhaps dramatically so, if you’d been diagnosed earlier. But I don’t think you could say it would have been any better. Life is often so random, the tiniest thing can end up having a monumental impact. It’s impossible to predict how things might have been different. Definitely give yourself plenty of time to process feelings of regret. This might also be a good way of learning valuable lessons for the future. Ultimately, though, we can only live in the present, and we only have the power to influence the future. Redirecting our attention here, to living in and appreciating the present and working towards a future we desire – is really all we can do.

Processing emotions post diagnosis (part 1)

Copy of Copy of Copy of Copy of Vantage Points

An autism diagnosis (as well as the often ongoing process of disclosing and witnessing other people’s reactions) can play on your mind and heart in innumerable ways, giving rise to a whole host of often mixed and confusing thoughts and emotions. One of the biggest things I struggled with post diagnosis was trying to make sense of what I was feeling. The emotions were definitely there because I could feel them, sometimes very intensely, whilst at other times they were somewhat muted and dulled but still dwelling somewhere deep down. The feelings often manifested themselves in the form of physical sensations: a tight chest, a warm feeling around my heart, a queasy stomach, a soaring feeling in my gut. But they were confusing because I couldn’t easily identify what they were, nor separate them out, assign them a precise label with any confidence, or determine where they came from. All this kind of freaked me out. I tend to live life at quite an emotionally neutral level which I find natural, easy and comforting. When something big happens and the intense emotions do get unleashed, it can be hard to deal with. 

Because of being somewhat alexithymic, I tend to intellectualise my feelings which becomes an exercise in trying to identify what I think I feel. What are these feelings? How many of them do I have? What might have triggered them? Are they a problem I need to try to do something about? Writing proved to be the most effective way of unpicking these questions and trying to add clarity to my emotional experience. But still, intellectualising and writing are not perfect methods because I’m still only getting an approximation of how I feel pretty much based on what I think it would make the most sense for me to be feeling. Often I’m not even sure that I am experiencing a certain emotion. It can seem a lot like guesswork. And sometimes, the more I start thinking, the harder it becomes to tap into the feeling, as if I can only either think about or feel an emotion at any one time. And the thinking never really seems to do the feeling justice, as if the emotion eludes any attempt at being captured and defined by mere words.

I wrote pages and pages about (what I thought were) my emotional reactions in the weeks and months following diagnosis, which proved to be quite a useful coping strategy. I also found reading about those in a similar situation served as a useful guide for common emotional reactions that might also apply to me. I ended up condensing my notes down into table format so I could more easily visualise and gain a sweeping overview of the different emotions I was having. I noticed that a lot of these were directly conflicting or oppositional and that a negative interpretation could be paired with a positive (and often more valid) perspective on the same issue. I’ve decided to include a version of that table here. I came up with 12 negative emotions that seemed to be affecting me and then a positive reframing of each one.

If you are recently diagnosed, or an autistic person dealing with a particularly heavy emotional load, and especially if you struggle with alexithymia, this might serve as a useful set of prompts for the types of emotions you might expect to experience. It may help you with trying to identify and understand certain thoughts and feelings in yourself and with potential ways of reframing them if they seem overly negative or irrational to you. As always, everyone’s experience will be unique, especially when it comes to something as personal and complex as our emotional lives. Thoughts and feelings in the post-diagnosis phase will obviously be affected by so many factors – our personality, experiences, diagnosis experience, knowledge of and level of interest in autism, the people around us and their reactions, our capacity for introspection, and on and on.

Before diving into the nitty gritty, just below you can find a summary for easy reference of the various emotions I identified and how they can potentially be positively reframed. Please let me know in the comments if you have any more that you might have personally experienced or heard about – I’m sure there must be plenty of them!

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PROCESSING AN AUTISM DIAGNOSIS:

A road map for overcoming negative thoughts/emotions and focusing on the positive

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Negative thoughts & emotions

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1 – Stigma of autism in society

2 – The reality of many negatives associated with autism

3 – Worry about negative perceptions from others. Possible negative reactions to disclosure.

4 – Sadness at (real or potential) difficulties of being autistic

5 – Shame

6 – Comparisons with other autistic people

7 – Comparisons with neurotypical people

8 – Overplaying the autism factor?

9 – Sense of alienation

10 – Worry about the future

11 – Doubting the impact self-awareness/diagnosis can make

12 – Regret over late diagnosis

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Positive reframing or resolution

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1- Questioning stigma. The value of difference.

2 – Nothing can be entirely positive

3 – People are generally not mean, just misinformed. Most will be positive or neutral.

4 – There are many positives (esp. if you’ve been lucky with your circumstances).

5 – Focus on what’s right for you, not societal norms.

6 – Every autistic person is different. Be empathetic.

7 – You’re not comparing like with like. The norm is highly subjective. The norm can often be problematic.

8 – Accept the feeling (it’s normal) and give yourself time.

9 – There are more similarities than differences. The discovery of a new community!

10 – Reasons to be hopeful

11 – Knowledge is power. Relief, understanding and empowerment.

12 – Potential drawbacks to earlier diagnosis. Gratitude to have found out now at least. (This one can be reversed in cases of early diagnosis.)

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#1

NEGATIVE                                          

There is a mainly negative stigma associated with autism in society

Negative or mistaken perceptions about autism in other people and the general culture (as reflected in things like language, the focus on impairments, the “fix-it” mentality and so on) are all too common. I worried about internalising these messages, if only on a subconscious level. Before I’d properly come to understand autism or that I might be autistic, my views were more or less in line with those of the general population. This made me all too aware of how common and easy it is to believe or simply not know certain things about autism in the absence of any proper education. I think I can be especially sensitive to external views, especially anything negative, which perhaps has something to do with being autistic itself (though I know some autistic people say they feel quite immune to external opinions and judgements). It’s all very well saying “it doesn’t matter what society thinks, just ignore them”. But a) it can be hard to ignore, b) negative discourse around autism does have very real repercussions, both psychoemotionally and in more concrete terms. You can’t argue that the way society chooses to talk about and represent a group of people (especially minority populations) isn’t important. In fact, you could argue it’s the core issue. (Also, see 3.)

POSITIVE

Questioning stigma and the value of difference

It’s important to realise that many people’s perceptions of autism and the ways in which autism is represented in wider culture are often unfair, biased and just plain wrong. (I will make a list of some common stereotypes and mistaken beliefs in a future blog post.) It can be useful to remember that this applies to many things besides autism as well. People lack accurate, nuanced understanding about many things, especially if they don’t have any experience of it personally.

The best strategy I found to help with questioning and reframing negative views was simply to go online and seek out thoughtful, critical and progressive people talking about the subject. The neurodiversity movement has gained a lot of momentum in recent years, so there’s a lot of great information out there geared towards countering misconceptions and charting a positive way forward, especially the work of autistic self-advocates.

One of the most helpful views I came across was the following: Current societal views around autism are culturally and historically contingent and highly subjective. There is nothing inherently wrong or right about autism, we choose as a society to make it one way or the other. It’s essentially a cultural decision to label autism as a disorder, to frame it in terms of mainly problematic symptoms, and even to diagnose it at all. It can be helpful to realise that logically there really is no objective natural truth for autism being a disorder. Society has constructed autism in this way just because it happens to suit society. Reading up on the social model of disability is a great idea too. It reinforces the notion that there’s nothing inherently wrong with autistic people; rather many of the challenges arise from the societal context we find ourselves in.

The neurodiversity / autistic self-advocacy movements also argue that autism is not a deficient way of being, but a different one, and one that can bring many benefits, both for the individual and society at large. From savant skills to special interests, outside-the-box thinking to unique ways of processing and appreciating the world, there is immense value in autistic ways of being. Unfortunately, society can be all too quick to overlook these positive differences. But this is starting to change and tapping into progressive developments can be very morale boosting.

As time went on I also increasingly realised that it doesn’t really matter what most people think. It is my own mindset that matters most, and I genuinely feel positive about autism and being autistic, which is great. As long as I can filter out and critically interpret whatever I hear, then I’ll hopefully be less likely to internalise problematic views. I was definitely most vulnerable to taking onboard demoralising ways of thinking or talking about autism when I knew a lot less than I do now. So increasing understanding and taking the time to think critically is really what helps. This might only be on an intellectual level at first, but hopefully it will filter through emotionally with time. Trying to share what you’re learning with those close to you is also great for encouraging more accurate and positive mindsets around autism. And if you want to contribute to the task of raising autism understanding and acceptance more widely then writing online is a great option – even if it’s just to help yourself feel better.

#2

NEGATIVE                                    

The reality that there are negatives and difficulties associated with autism

You can do all the neurodiversity-inspired “autism-as-difference-not-disorder” reading you want. But this doesn’t change the reality that there are many difficulties that come with being autistic. Moreover, not all of these challenges are merely the product of relations between an individual and wider society, as per the social model of disability. There are some difficulties that are core to the person (i.e. impairments) that have nothing to do with other people (though how others react is often key in determining outcomes and how disabling things become). Even if we could build a 100% autism-friendly society (What would this look like? Would it even be feasible?), would this eliminate all the challenges faced by autistic individuals? Probably not. Sometimes I can find it hard to deny that there isn’t some intrinsic problem or disadvantage here, especially when it comes to stronger forms of autism.

I sometimes catch myself thinking about autism in a negative way. This was especially the case in the weeks following my diagnosis. I also find that this negative mindset in itself makes me feel a bit sad, even ashamed. I had internalised some of the negativity. And I couldn’t deny that some of it is was a reality. At the same time, I didn’t want to be associated with something that is often perceived as inherently and unquestionably negative. I read things and exposed myself to progressive ways of thinking. But when I said to myself “autism is a good thing, it’s fine, I wouldn’t want to be any other way”, I couldn’t help feeling that I was partly lying to myself and perhaps in denial of the more negative but potentially realistic view of autism. (Or, more positively, perhaps this negative mentality was just a small part of me trying to test or sabotage how I truly felt.)

Of course, on an intellectual level I knew that the reality was more mixed and subtle: some parts of autism can be negative, others positive or neutral and all this changes over time and across contexts. But still, the thought of anything negative still bothered me. Perhaps this has something to do with black and white thinking: I couldn’t easily view autism as something that is both positive and negative at the same time. Or something to do with perfectionism. Or perhaps I simply felt that the negative framing didn’t reflect my own experience of autism (and that somehow others would struggle to believe this). (Also, see 4.)

POSITIVE

Nothing can be entirely positive

No one person or thing can be entirely positive or perfect and it’s important not to deny the difficulties that you or autistic people in general face. I found it helpful to approach the more negative aspects from a rational perspective. Most of them are entirely logical and here for a very good reason. Many autistic traits are a way of dealing with our heightened sensitivity to the world and without them it would likely be much harder for us to cope. Autism makes sense and this helped me accept and embrace it. I can accept things that are logical.

With autism, as with most things, a lot of the challenging aspects can be directly flipped into more positive traits by applying a different perspective on the issue. In other words, it’s a package deal. If we didn’t have the weaknesses, we likely wouldn’t have many of the positives that autism brings as well. I also think that it can prove very useful to have access to a concept that provides relatively clear insight about what some of your likely weaknesses might be, along with coping strategies that might work. In this respect, neurotypical people have less of a ready-made guide or starting point for developing self-understanding.

It can also help to think that the negative experiences many autistic people face is, in part, a result of negative perceptions in the first place. In other words, it can be a self-reinforcing cycle. This may seem demoralising, but it provides hope for change in the future, and change that may be relatively easy to achieve (compared with trying to change autistic people themselves). If you can improve perceptions and attitudes, this works towards helping improve reality, which will then feed into changing perceptions even more.

I’d also add that it can often muddy the waters to start thinking about Asperger’s and strong autism using the same frame of reference. This is getting into controversial territory, though, so I’ll leave this topic for another blog post.

(Also, see 5.)

#3

NEGATIVE                                    

Worry about negative perceptions in others

This issue is similar to point 1, but relates to encounters with actual people rather than more broadly with discourse and at the more abstract level of society. There can be some degree of worry about negative judgements or misunderstandings from other people in relation to two points:

a – People judging/reacting to the autism label itself

b – People judging/reacting to what is perceived as atypical behaviour without them knowing you are autistic (what Tony Atwood calls a “moral diagnosis”).

There are many misplaced stereotypes that people associate with autism, some of which are not only inaccurate, but also hurtful, potentially even harmful. I will outline some of the major ones in a future blog post. Here, I’ve listed some of the different types of potential negative reactions to disclosure, in descending order from the very bad to the less bad:

-Outright negative judgement and discrimination. After disclosing, the person changes how they think about or treat you for the worse and makes this obvious to you.

-The person changes their perceptions or treatment of you in a way that is not welcomed, even though they are well-intentioned. Examples include patronising behaviour, lowering expectations, making assumptions about how autism affects you, attributing everything about you to autism, etc.

-A person unknowingly lacks information and understanding and they are resistant to learning, i.e. they think they know what is autism is when they don’t and certain stereotypes and misconceptions can have a strong hold on them.

-Overplay: People reacting with a lot of concern and emotion, with the underlying assumption that autism is negative, e.g. pitying (“I’m so sorry”), inspiration porn, suggestions for ways to fix, cope, even cure.

-Underplay: Disbelief, perhaps even denial. Or downplaying via comments along the lines of “you don’t look autistic…”, “you must be very high functioning”, “aren’t we all a bit autistic?”.

-The person seems to lack any meaningful response or actively avoids pursuing the subject. Perhaps due to confusion, embarrassment or feeling that autism is a socially risky topic to talk about, or perhaps due to simple disinterest.

-A person who lacks information and understanding, but is very aware about this and open to listening and learning. (This one starts to merge into the positive reactions to disclosure.)

I think that the more overt types of prejudice are perhaps less tricky to deal with than some of the milder reactions. Overt prejudice is much rarer, of course. It’s also much more obviously wrong and therefore (hopefully) easier to challenge or dismiss. I think it’s often the comments that people think come across as well-intentioned that can actually be the most pernicious. At the end of the day, you should never have to put up with people talking about autism or autistic people in a way you aren’t happy with. Especially if it’s directed at you personally, it’s your right to correct people (nicely works best!), explaining why you have an issue with their words or behaviour.

b

The second type of issue relates to worry about appearing different to others, whilst knowing that people may be confused or offended because they don’t know you’re autistic. (One way around this, of course, is to tell people about your diagnosis, but this isn’t always easy or appropriate. Also, having others know, doesn’t necessarily put a stop to any anxious feelings you might have about being or appearing a certain way – see section 6 on shame for more on this). Speaking for myself, whilst I felt pretty happy with the autistic identity myself, when I first brought others into the picture it seemed to introduce some level of anxiety and uncertainty.

This anxiety may be rooted in common autistic social issues themselves. It may be caused, in part, by difficulty reading people, anticipating their perspectives and reactions and responding “appropriately”, creating a degree of paranoia. The worry might stem from a difficulty in knowing or being able to control how you come across to others. It may be linked to past experiences of others saying certain things or behaving in certain ways towards you. It will very likely be fed by the awareness that there are pressures to appear and relate in a “normal” way that might be difficult to uphold. I imagine that this self-consciousness and doubt probably applies most to those who are not “obviously autistic” and yet aren’t able or willing to perfectly camouflage their traits either. The people in-between, who others might notice as being a little different – perhaps unusually quiet or shy, a bit abrupt or odd in some indefinable way – but without being able to decipher much beyond that.

Sometimes people will tell you outright – in a nice or not so nice way – that you seem different. Most of the time, though, they won’t. But you may still be able to sense that they feel or think a certain way about you (autistic people often have an especially strong sense for negativity in others, especially if it’s directed towards their own selves). Gaining the knowledge that you’re autistic could serve to increase self-consciousness because now you know for certain that you are different and may appear this way to others. There can also be some degree of internal stigma that is exaggerated, even imagined. All this can lead to an element of uncertainty and paranoia along the lines of: “I know I don’t quite come across like everyone else, even if it’s generally quite subtle, but I don’t know what exactly it is that makes me seem different. Even if I did I may not be able or willing to address it”. I myself, went through a period of wanting to ask people how I come across – which I did do with a couple of people close to me. But people might not be honest with you. Alternatively, they could be too honest and end up hurting your feelings.

Of course not everyone will worry about this. Sometimes I get the impression that these sorts of reactions in autistic people can be quite extreme – either caring way too much what others think of them, or not at all. It will likely depend on a mix of personality and past experiences. Gender might have something to do with it as well as girls are generally more concerned with wanting to fit in. Perhaps even the type of autism itself could have a bearing, whether it be theory of mind abilities, the degree of sensitivity to other’s emotions (especially negative ones), or something else.

POSITIVE

Most people will be positive or neutral (those who aren’t don’t really matter). Most people don’t really care, so try not to worry. The value of having an explanation. Try to free yourself from the desire to be or appear “normal”.

a – People judging you knowing you are autistic:

Negative reactions are usually due to misinformation, not bad intentions. Most people aren’t mean, they just don’t know much about autism, and this isn’t their fault. I didn’t know much about autism before a couple of years ago and there are still so many other forms of difference that I am not informed about. People can’t be expected to know everything about everything. Of course, misinformation isn’t an excuse to go around saying thoughtless things. In fact, ideally, it should mean that people act extra sensitively, with the humility and awareness that they simply don’t know enough and can gain from listening to those that know more.

People who matter will be understanding and accepting, or at least make an effort to be. Even though they may be completely uninformed, they will be open to learning from what you have to say about autism in general and about yourself. Those who don’t make an effort to do these things, should send alarm bells ringing. In fact, it could be argued that disclosing serves as quite a useful filter for finding or keeping nice people in your life.

Things that can help when dealing with less than positive reactions and trying to inform people, include: talking about the huge diversity of autism; focusing on yourself and your particular profile of traits; correcting misplaced stereotypes; directing people towards good resources (articles, books, videos) if they’re interested in learning more; encouraging them to ask questions and making sure to keep opportunities for further discussion open in future.

Above all, people’s reactions are likely to be neutral, if not positive, especially those close to you – the people who matter most. There can be many, many positives to diagnosis and disclosure for those around you. It provides people with an explanation for the way you are. People may worry less and experience less confusion. It feels really good to be around people who are accepting and accommodating of your differences. People will hopefully be more inclined to take your concerns seriously if they weren’t before. You’ll likely feel more able to be more open and honest about the things you find challenging because now you have a legitimate and logical explanation for them. It can help take the emotional charge out of issues that previously seemed confusing. Your life should become easier as those around you strive to become more accommodating and supportive.

b – People judging you (negatively) without knowing you are autistic:

If you are late diagnosed, as I am, then this will likely remain the same as it has been throughout your life to date. There might well have been varying degrees of anxiety or shame about appearing different. And in all likelihood you will continue to come across as different – perhaps even more so if you find yourself leaning towards embracing your differences or want to stop trying so hard to “pass”. Simply knowing you are autistic certainly doesn’t make you appear any less autistic or necessarily enable you to “fix” awkwardness in social encounters. But post-diagnosis, there’s one key difference that can help immeasurably: you now know how and why you are different. You can choose to disclose your autism diagnosis to others (or explain certain aspects of yourself without mentioning the A-word if you prefer). It can be quite good ammunition to fire back against any prejudice you encounter. Best of all, simply having the knowledge in your own head can be enough to make you feel a lot better about yourself in the face of any negativity.

To get to the heart of the issue, it’s also worth thinking about the value of caring what other people think. A huge amount has obviously been written on this in the self-help literature. You might want to think about how outward behaviour isn’t necessarily a true reflection of who you are as a person. This is especially so when you are autistic which can create a degree of disconnect between the internal (experience) and the external (appearance). People can very wrongly value style (i.e. non-verbal communication) over substance. It can also be helpful to realise that we have very little to no control over what other people think. Try to give up any desire to control this, especially when it comes to how others view you. Above all, it can help to realise that most people simply don’t really care about the majority of people. They are too fixated on their own self and life, as every one of us is. People close to you should care of course and you should care about them, but hopefully values like honesty and authenticity will be central to these relationships which makes things easier.

Finally, if you feel negative or insecure about being and appearing different, this is completely understandable… but it can be worthwhile trying to reframe your perspective. Different does not mean less, it just means different. Throughout history, people have often viewed anything different as surprising, unknown and thus potentially suspect, despite the fact that there is nothing inherently wrong with difference. Humans often simply interpreted new and unknown as potentially dangerous and hence to be avoided or perhaps eliminated. This makes sense from an evolutionary perspective, when our daily survival was under much greater threat than it is for most of us now. But hopefully we might be able to evolve out of this out-dated instinct with time – or at least use our intellect and empathy to fight it.

Attitudes are starting to change in society thanks to the neurodiversity movement, along with civil rights movements and growing acceptance of difference in other domains of life as well (learning to accept one form of difference often leads to an open-minded attitude to other sorts of differences). But there’s still a long way to go. This doesn’t mean you can’t have a positive mindset yourself, though, and make a conscious choice to adopt and apply it if needed. Accepting, embracing and valuing autism is probably the most important thing you can do for yourself. Don’t put pressure on yourself to be “normal” if you feel it does more harm than good. It can feel very liberating to express your differences in wider society (e.g. public stimming) and help increase societal exposure to neurodiversity. Even if there is negativity and doubt in people around you and society at large, there’s nothing to stop you making the choice to think positive. Although it might only be on an intellectual level at first, hopefully it will feed into the emotional realm as well via genuine feelings of acceptance, pride and optimism.

#4

NEGATIVE                                    

Sadness at (real or potential) difficulties of being autistic

Emotions such as sadness, grief and self-pity can be pretty common following an autism diagnosis. This is especially the case for those who are late diagnosed who will have more experience to reflect on and are likely to have struggled due to feeling different without explanation or appropriate support. There can be sadness in relation to the past (often in the form of regret – see 12), simply in relation to the fact you are autistic (especially if you’ve internalised negative views), and in relation to the potential difficulties you may face in future (see 10).

For me, the feelings of sadness were quite slight (or perhaps they were just hard for me to grasp due to alexithymia), but included:

-A degree of sadness about some of the typical things I missed out on growing up, especially in my late teens and mainly around social stuff. This doesn’t bother me too much though. I largely excluded myself, was pretty happy being alone a lot of the time and doubt I would have flourished in attempts to be more socially integrated. A part of me does wonder if my attitude might have been different if I’d known about my autism. Perhaps I would have taken adaptive measures to be social in ways that might have been easier for me – e.g. one-to-one, quieter environments, around specific interests. It’s impossible to say what the difference might have been with a diagnosis.

-Realisation that my difficulties are lifelong. They can be managed and improved, and may fluctuate naturally, but the core issues will likely remain the same. For me, this sadness applies to social issues, especially. Before my diagnosis, I think I always imagined that at some point in the future I would get over certain barriers and magically feel at ease in social situations.

-I also have a small twinge of pre-emptive grief about the things I might not be able to achieve or (perhaps more accurately) things I could achieve but that I wouldn’t be comfortable sustaining. This isn’t a strong feeling, though, and it’s mainly in the form of a fantasy stemming from social conditioning around what people are “supposed” to do. I feel fine about who I am and about the prospect of maybe having a less than typical life, as long as it makes me happy.

Interestingly, I also felt some guilt/shame around the very fact that I was experiencing some feelings of sadness and self-pity. I felt I was being too self-absorbed and that my situation didn’t deserve pity, thinking to myself “there are so many “worse” things than having Asperger’s”. I also didn’t like the fact that the sadness must mean I felt on some level bad about being autistic. There’s a really good video from The School of Life on self-pity which I happened across around this time. It highlights the value of self-pity, which can actually be seen as a form of self-compassion, and how we shouldn’t repress it because it can actually be helpful in reducing feelings of depression and in the realisation and acceptance of difficulties.

Overall, sadness was not a huge emotion for me. I think. I’m not entirely sure because I find it hard to identify what my emotions are, especially when they are mixed in with others. A lot of the time I questioned why I didn’t feel or act more sad. To the extent that I worried I might be repressing or denying any feelings of sadness, or somehow lying to myself about feeling pretty happy about  my diagnosis.

In relation to witnessing sadness in others: I was reactive against any pitying behaviour (I didn’t want to feel there was anything to be sorry about), yet at the same time a part of me was craving more sympathy and compassion. It can be a bit tricky – figuring out how big a deal an autism discovery and diagnosis is and the sorts of reactions you should expect from those close to you – see 8 for more. I guess it’s best to just go with how you feel and try to stop second-guessing everything!

Moving beyond myself, I definitely did have feelings of sadness about the difficulties faced by a lot of autistic people in general. I felt especially bad for those struggling with being undiagnosed, mental health problems, encountering difficulties with getting diagnosed, or being exposed to negativity and perhaps growing up feeling bad about their identity/diagnosis, to the extent of wishing they were not autistic in some cases.

I also felt sad about the reality that it is undoubtedly harder to live life as an autistic person in this world. Of course, this is on average and it doesn’t mean that every autistic person will be struggling more than every NT person. I felt bad thinking that most people would not choose to be autistic (if they could choose before birth, before actually becoming autistic or knowing they would become autistic). Most autistic people would not want to change being autistic, myself included, but this is because most people do not want to change who they are once they are who they are. I also doubted that any NT would want to switch to being autistic.

I felt some degree of sadness, annoyance, even anger at the amount of negativity there seems to be around autism – to the extent that certain difficulties are painted as practically inevitable. This includes secondary problems such as mental health problems or bullying, which often seems to be expected or taken for granted. I realise this reflects the reality for many, but it doesn’t reflect my reality – certainly not wholly – and probably not the reality of every autistic person. I don’t like to feel associated with difficulties I haven’t experienced. Even those I have experienced don’t define me. I don’t like the idea of people potentially making negative assumptions about how my life might be because I am autistic.

Finally, I think many of the thoughts above had the effect of making me feel slightly vulnerable. Too open and exposed, as if people have insight into my potential issues simply through having the autism label. Of course, this is especially the case if you start talking or writing about your challenges and emotions to people in real life or on the internet. It can exacerbate exposure anxiety, which is already quite high in many autistic people. But perhaps this is precisely what we need to help reduce anxiety – exposure.

POSITIVE                                  

There are many positives associated with autism and reasons to be grateful. Plus, it’s healthy to OPEN yourself to feelings of sadness and vulnerability.

To help with thinking more positively about many of these issues, it first helps to realise that not everything can be entirely positive. Acknowledge the difficulties that you have are very real and legitimate – don’t try to deny or dismiss them. Don’t blame yourself for struggling (this is very important and something the social model of disability may help with) and don’t feel that you are underserving of compassion or support. Work to understand your difficulties: often a problem truly understood, is at least half way to being solved. Accept the issues that you can’t easily change (or don’t want to change), and focus on changing the things you want to.

Next, make sure you focus on all the positives! There are two areas to consider here. First, the positives commonly associated with autism itself and, second, the positive life circumstances that you might have had and various factors you can think to be grateful for.

Positives of being autistic: These will be different for everyone, because autism is so diverse and autistic traits mix in with everything else that makes us all individuals. Still, there are common areas of strength that are shared by many on the spectrum. These include excellent attention to detail, hyper-focusing abilities, honesty, strong morals, an appreciation for the (positive aspects of a) sensory environment that goes beyond the norm, and plenty more. I’ll dedicate an entire future post to the positives commonly associated with autism.

Positive life circumstances: These will likely help reduce the difficulties that can come with being autistic. Obviously this one is very dependent on the individual, and some people will not have been lucky enough to have had mainly positive influences in their life. Some argue that autistic people are more liable to negative life experiences because of their autism (and not just the luck of where you end up), even from very early in life. I think the orchid hypothesis (often applied to highly sensitive people) can usefully be applied to autistic people. By nature, sensitive people are more affected by their environment and thus in a way more malleable. Positive circumstances can influence them more positively than with the average person, whilst the fallout from negative experiences can be much greater than for a typical person. If you’re lucky enough to have enjoyed a good upbringing, conducive environment and mainly positive experiences, being autistic could actually be an advantage, putting you in a better position than your average NT!

I also find that it helps to focus on autism as a whole, on the fact it is a package deal. I think a big reason why I didn’t feel overly sad about my difficulties is because I knew they were intrinsically linked to other parts of my self, parts that I really value. So, for example, noise sensitivity is a huge problem for me. And yet, despite the pain and overwhelm I often experience, I find it hard to feel too down about it. Perhaps this is because I realise that getting rid of one thing would mean getting rid of a lot more and perhaps even changing who I am as a person. Noise sensitivity is a part of being sensitive more broadly – across all my senses, as well as emotionally – and there are many aspects of this I love, to the extent that I would not want to be any less sensitive. If you start thinking about challenging autistic traits and those traits or strengths you value, there are often direct connections between many of them. This might help reconcile negative feelings about the difficulties.

On vulnerability: It can be a scary emotion. But it’s also pretty powerful and potentially useful as well. Brene Brown did a great TED talk on this topic. Laura James, author of Odd Girl Out (a must read for all females on the spectrum, especially late diagnosed) also talks about the value, even beauty of opening to feelings of vulnerability. Being open and honest paves the way for increased understanding, accommodation and acceptance. Being vulnerable is a courageous thing to do and often opens avenues for connection. If you take the initiative to talk about your difficulties, this often encourages others to follow suit. It can also help diffuse the fear – if you are open about your weaknesses it almost serves to disarm people, taking away potential ammunition and actually reducing feelings of vulnerability. If it backfires and there are unwanted consequences, at least you will have learned something about the person/people involved.

Are we seeing autism reality? It’s easy to feel sad about the struggles faced by many autistic people in general because of all the negative discourse that surrounds us. But, I think issues with representation may mean that we aren’t getting a wholly accurate picture. It makes sense that we would hear about the most challenging or dramatic differences that autism can bring. These are what draw people’s attention and are what lead people to seek help. People who have been through difficulties are perhaps more likely to talk or write about their experiences (though, of course, the opposite could also be true – many people struggling will be too drained of energy to speak out). Meanwhile, we are perhaps less likely to hear about all those autistic people who are sailing along pretty much ok – including the large numbers of undiagnosed or closet autistics – simply because there’s nothing dramatic to report or they feel less need to speak about their experiences or seek advice and support. The reality is often pretty difficult, but we shouldn’t necessarily assume we have a representative picture.

#5

NEGATIVE                                    

Shame

Shame is a commonly experienced feeling for many autistic people struggling with things that seem to come so easily to other people. This is especially the case for those who are undiagnosed because of the lack of explanation and the expectations surrounding them. The true cause for their differences is not known and so the person themself, as well as those around them, searches for any or every factor that could potentially explain these differences. This might range from intrinsic things about them as a person such as personality traits, intelligence or morals, to past life experiences, co-occurring health conditions or something as banal as some aspect their appearance, such as hairstyle or dress sense. Based on comparing themselves to others, they feel that they are different. Based on others reactions to this, this difference is often interpreted in a negative light. And lacking any viable explanation, they tend to blame themselves for these perceived negative differences, leading to shame.

Of course, shame can also persist in diagnosed autistic people, though having the right explanation usually takes the self-blame aspect out of it. Autistic people, especially adults who struggle with seemingly simple tasks, may feel ashamed about any number of autistic traits – from struggling with basic daily living skills, to becoming overwhelmed by loud, busy places and needing to shutdown afterwards, to being unable to speak up in a group of people.

I think shame was quite a strong emotion in me before my diagnosis, but it was hidden deep down, perhaps because I was ashamed of the shame itself. Even now, I feel reluctant to admit that I felt or still feel a certain amount of shame about some things. I guess much of this reflects a pressure (imagined or real) to be, or at least try to appear, “normal”. Despite the fact I feel reluctant to include some of the below – because of the shame – I’ve done so anyway because I think it’s important that we feel able to be open about these things.

-I felt some shame about being very quiet and shy around people, particularly those I didn’t know well and especially in group situations. Growing up (and still today) I found it very hard to participate in a group interaction of more than 3 or 4 people. I didn’t understand why this was at the time. Sometimes I attributed it to myself – some aspect of my personality – though often I would attribute it to others as well – thinking they were talking about boring things, or being too loud or chaotic for my liking. It made me feel especially upset and embarrassed when people would highlight how quiet I was – I neither had the understanding nor the ability to give a proper response. (As a side note, never ask a quiet person why they are so quiet – it’s probably the last thing they want to hear and will likely make them feel a lot worse.) Though it’s not made explicit, it’s clear by asking this question people are indicating that they’d prefer you not to be this way, and it’s easy to interpret this as a form of criticism. Even though the person themselves might not see quietness and shyness as inherently wrong, the fact these things are generally not valued in our culture is often enough to lead to feelings of internalised shame.

-Even with the knowledge I am autistic, I can still feel slight feelings of shame, because the mere knowledge doesn’t make my traits magically disappear. In social situations, I am usually painfully aware whenever I seem to be falling short of upholding neurotypical standards. I feel bad for creating anxious, confused or uncomfortable vibes within the interaction, feelings which I think are heightened because I am so sensitive to negative cues in others.

-I also felt some shame about struggling to make friends, or for being very introverted and preferring to be alone a lot of the time. All this led me to not wanting to open up about my social differences and difficulties. I felt ashamed about admitting to these things, even to those closest to me. Our culture really values sociability and it’s an integral aspect of life. So I understandably felt reluctant to broach the subject – it felt like admitting to a huge failure on my part. I also didn’t want to cause the people around me any worry. Post-diagnosis, it became so much easier to talk about these issues, which feels extremely liberating. Now, unlike at school, I’d never feel the need to hide or even lie about my social preferences, interests or how I like spending my time.

-More recently, in the years since graduating and since having stopped conventional full-time employment, I’ve felt some shame around how I spend my days and about my life trajectory, both its recent past and its potential future course. This mainly relates to my ability to work a conventional job and achieve financial independence. I feel a little ashamed about living with my parents and not making a full-time income in a “proper” job. I also feel shame (or perhaps it’s more FOMO – fear of missing out?) when I don’t travel abroad for a while or don’t seek out enough new and challenging experiences, and instead become “stuck” in a very routine way of living. This isn’t necessarily because I want to be out doing lots of adventurous things (though a part of me does I think), it’s more about how I match up to what most other people value. Perhaps it’s a bit of both? It can be hard to disentangle how much is what I naturally want or don’t want to do, and how much is external and internalised pressure from society. If you find that you aren’t following the conventional path laid out by society, either due to a lack of desire or ability, there can be some shame/guilt around this as well – to the extent that some autistics (even those who are diagnosed) continue to try to forge out as close to typical a life as possible, even at great personal cost.

Finally, I can sometimes feel shame in relation to the negativity about autism that sometimes surfaces in me. For example, I might find myself thinking negatively about a certain autistic trait I have – even if it’s quite banal, like the impulse to flap my hands. This is essentially internalised ableism. But I’m very aware that I am thinking in a negative way, and I hate that I am, which is what creates the shame – or more precisely the shame at the fact I feel ashamed. Similarly, when I’m learning about stronger autism I might catch myself thinking things like “that’s really bad”, “they seem so odd” or “I’m glad I’m not like” – horrible ways of thinking that I feel ashamed to admit to, but which can be hard to break out of. At the very least, being mindful of how you are thinking is a great start and then hopefully each of us can work on building empathy and understanding for those that fall outside social norms, including towards ourselves.

POSITIVE

Focus on what is right for you, not societal norms

Thankfully, receiving a diagnosis and understanding the reasons behind common autistic traits greatly helps alleviate any sense of shame or self-blame for many people. Simply knowing that certain difficulties are common among autistic people is so valuable. It highlights that there must be very legitimate reasons behind behaviours that are so widespread and that there is, in fact, an entirely different way of being normal (or normal way of being different!). Nobody is to blame when things seem difficult, least of all yourself, and autism isn’t something we should be in the habit of associating with feelings of blame at all.

It can be really valuable and liberating to open up about things that you previously – or still – feel ashamed about. Try to comprehend the very good reasons behind certain traits or tendencies. Talk about them with understanding people, even if it’s hard (it’s usually what we find hardest to talk about that we are most in need of talking about). If you’ve been hiding parts of your autistic self, opening up will help reveal your true nature to others – and perhaps even yourself – as well as possibly highlighting the true extent of your differences and your need for the right support. Hopefully you’ll realise that any fears of negative judgement or repercussions were exaggerated, even imagined (especially in relation to those closest to you), or that they can now be more easily ignored or challenged where you do encounter them. It can feel very empowering to do all this and many newly discovered autistic people (especially late diagnosed) report dramatic feelings of relief and feeling reduced pressure to camouflage and “pass” as NT. (It’s a bit sad isn’t it that we need to be given a very good reason – like an autism diagnosis – before we can feel free to be fully ourselves, and sometimes even this isn’t enough.)

A great way to try to reframe feelings of shame is to think about where they come from. Shame is all about other people. It involves feeling that people will perceive you negatively for not conforming to certain expected norms and associated embarrassment or fear about this. If there were no other people on the planet, shame would not exist as an emotion. Guilt is a little different, it’s more of an internally-guided emotion, whilst shame is all about comparing yourself to others and feeling bad about yourself as a result of judgements and pressures that come in from the outside.

This means that it is societal norms which cause us to feel ashamed about some things, or proud about others. But these norms can be questioned. Being socially-constructed, societal norms are effectively biased and contain no objective truth or value outside of social reality. If you start to look at this social reality with a critical eye – which is arguably a pretty easy thing to do given the current state of the world – this can make you feel a lot better about not conforming to certain social norms (see section 7 for more on this). Perhaps we can then set about constructing a new set of norms that suit us as individuals, or the autistic community more widely, ones that make logical sense and that feel right to us. Hard though it often is (especially as we all tend to internalise so much of this stuff), try to disregard societal pressures that don’t seem to fit and focus instead on what is important or good for you to do or not do.

PART 2 TO FOLLOW!

Post-diagnosis: the immediate aftermath

Copy of Copy of Copy of Vantage Points

I could write an entire book about the impact of receiving an autism diagnosis, detailing both my personal experience alongside more general reflections on the process. But I’m really going to try to condense things down (or I’ll be here forever) and try to accept that a blog post – even a whole book – could never really do the experience justice. (Update/warning: This didn’t work out and this is one of the longest posts yet.)

In this post I discuss:

– My initial emotional reaction following diagnosis

– Some thoughts that were at the forefront of my mind – about autism, myself, the label, other people

– The follow-up post-diagnostic support I received

Then, the last two posts in this series will provide:

– An overview of the varied emotions that can occur post-diagnosis, with some thoughts to help with processing or reframing them

– Thoughts on how things have progressed for me 18 months on, with a focus on some of the more concrete, practical changes that can result from an autism diagnosis

The days and weeks following my diagnosis (and disclosure to my immediate family) naturally brought about a number of intense shifts. These were mainly internal shifts – in terms of how I was feeling, what I was thinking – but also more concrete changes in terms of what I did day-to-day (though on reflection I was remarkably quick at returning to my usual routine) and my interactions with those around me. Looking back, it was a pretty confusing time, full of contradictory thoughts and emotions. After I got over the initial shock and recovery phase and gradually became more used to my newfound identity, I found the positive emotions came to the forefront and on the whole I felt pretty validated, liberated, even excited.

 

The immediate emotional impact

The first few hours following my diagnostic appointment were spent alone recovering from the intensity of it all. I felt very physically drained, almost ill, like I was recuperating from an episode of flu. I became extremely sensitive to noise and lights. My entire body was achy and tense and my skin had a horrible crawling, almost burning sensation a lot of the time. My head was filled to capacity incessantly replaying events, thoughts and snippets of conversation. Initially, I could barely look people in the eye or talk to them much and was overly blunt or sensitive when I did. I lost some capacity and interest in doing a lot of daily activities or thinking about anything other than my diagnosis. In short, I seemed to have suddenly become a lot more autistic and was continually noticing everything about myself that seemed autistic.

Emotionally, I certainly felt very relieved. Other than this my feelings were quite numbed and muted at this early stage. Then I told my parents everything, which triggered a definite shift in how I was feeling – from the bubbling excitement that characterised the pre-diagnosis period, to a state of more confused and negative feelings. In hindsight, I think disclosing was a lot more emotionally intense than the internal process I went through with discovering autism, and even with receiving a diagnosis. The process up to this point had been life-changing of course, but it had somehow felt quite easy. This was probably because I felt so positive about the discovery/identity internally and I only had myself to deal with.

Not that my family’s reaction was troubling in anyway. It’s just that disclosing for the first time and to the most important people in my life made the whole thing seem suddenly so much more real. Reality hit and it unleashed a whole barrage of emotions. It was now outside of myself, affecting other people, beyond my control. I was externalising everything I’d found out about autism and myself (or at least trying to), dealing with varying reactions/non-reactions, and this seemed to be influencing how I thought about autism and about myself in the process.

Interactions are powerful things. Witnessing and trying to make sense of other people’s perspectives and reactions – even merely being in the presence of people I’ve disclosed to – had a major effect in informing how I felt. Moreover, there seemed to be quite a significant difference between how I feel about autism/being autistic (mostly very positive) and how others and wider society perceive it (often negatively). Even though I tried hard to maintain awareness of this, to avoid internalising certain views or ways of thinking, I found this discord unsettling. I could see how people could all too easily use the autism label to make assumptions about me that were beyond my control and perhaps in direct conflict with what I actually think and feel and how I experience being autistic.

With something like autism, where there is still a lot of stigma and so many misconceptions, it can become quite toxic to read, hear and feel some of the things being said and written. This affected me, and still does of course, but I’ve increasingly learned the importance of filtering what comes in from the outside. Of course, give people the benefit of the doubt. Listen to and respect what they have to say. But then rationalise, critique and re-frame the things that feel wrong or bad and seek out the positive. This seems to become a lot easier the more knowledge a person gains about autism. Seek out people writing from a neurodiversity or social model of disability perspective or self-advocates standing up for autistic rights. The online autistic community in general is usually a pretty good place to go to feel better about things. I think it also helps that I’m naturally quite a critical and questioning person who does enjoy critically analysing things, especially at the macro societal level. If I can find a logical argument or explanation to counter something that feels troubling, then I feel better. I’d often crave alone time and need to write a lot to make sense of things so I’d feel more emotionally settled again. This usually worked a treat. As if the mere act of writing the words and intellectualsing – thinking about what I was I was feeling – made the feelings magically dissipate to a more comfortable neutral level.

A final point about other people before moving on: I sometimes found it slightly tricky to tell what people were thinking and feeling in relation to my diagnosis. Perhaps it’s just paranoia, but I’d get a nagging sensation there was some disconnect between what people were saying and what they really thought. So, overall, it seems there are some autistic traits – emotional sensitivity, theory of mind difficulties, alexithymia – that can directly influence the post-diagnosis stage, perhaps making it a little tricky to navigate in some ways. This is unsurprising of course – autism informs pretty much every aspect of an autistic person’s existence, especially during times of change, anxiety and strong emotions.

***

As the days turned to weeks I experienced a massive mix of thoughts and feelings that were pretty hard to unpick, identify or explain to myself or others. Also, things did not progress in a linear way and I never knew what stage in the process I was at I supposed to be at. I would go back and forth between feeling certain things, often for no identifiable reason, or experience very delayed reactions. I only became properly upset once, and this was completely out of the blue a whole week after my diagnostic assessment. It was very hard to understand what precisely was upsetting me. Regret about the past? Fear about the future? Sadness about certain difficulties? Something about the diagnostic process? Something about people’s reactions? Or just general overwhelm? It could have been any or all of these things. In any case, it would probably have been better to simply try to accept the way I felt, to sit with it for a while, rather than to obsess over analysing too much. Sometimes I even think it was the confusion about what I was feeling – not being able to name, fully inhabit or adequately express the feelings – that was more upsetting than the actual emotions themselves. Knowing what I do now, about alexithymia especially, I should have expected to feel confused and a bit uncomfortable. My emotions somehow very intense, yet strangely muted at the same time.

In hindsight, I experienced a bit of an emotional dip post-diagnosis/disclosure. This is pretty common of course, especially (I imagine) for those who receive a diagnosis out of the blue. I remember feeling slightly bad about the fact I was feeling a bit down. I didn’t want to view autism as a negative thing, I knew this wasn’t how I felt, and I didn’t want to convey this to others. But I don’t think my negative emotions were really about being autistic per se. They were more to do with worry about other people’s perceptions (which has thankfully faded with time) as well as some sadness and fear about past and future difficulties related to living in a largely non-autism aware/friendly society.

Following this dip, people tend to experience an upward trajectory as positive emotions and a greater sense of stability come to the forefront the more time goes on. This was definitely the case for me and I remember drawing a diagram of the emotional rollercoaster I felt I’d experienced at the time: up, then down, then back up again (this time higher than where I’d started). It’s a huge over-simplification of course – the process is not so rigid or linear. For example, there were times only a few days after my diagnosis when I felt remarkably normal as if nothing had changed and I questioned why I wasn’t acting more affected by what had happened. Had I properly processed everything? Wasn’t I learning or changing as a result? And now, more than a year later, I can have sudden bouts of feeling very intense about the whole thing. The emotions are still very raw, bubbling away under the surface and can be quite easily triggered. I’ve noticed this is often linked to times when I venture outside my comfort zone and my difficulties suddenly become apparent via the effects of the sensory, emotional and cognitive overwhelm that usually comes from being around people I’m not used to or in unfamiliar environments – especially if the event itself is autism-related. In fact, even reading an article or watching a documentary about autism, if it’s particularly powerful or relevant to my own situation, will make me emotional and completely consume my mind for a few hours.

***

Here are a few thoughts that were on my mind around this time.

I imagine they are all pretty common, so might provide some indication of what to expect in this early post-diagnostic stage.

  • Doubt. I still had an inkling of doubt in the first few days after my assessment. I was honestly still not 100% certain. I hadn’t undergone the hours of questioning and tests that I knew were involved in some diagnostic processes. A small part of me feared I’d overinterpreted my behaviour and provided too much evidence, so that the professional virtually had no choice but to diagnose me! I tried to rationalise and focus on the fact the diagnostician was clearly very experienced and seemed pretty convinced. The doubt faded with time. It faded as I started to discuss things more with my Mum, especially my childhood and her impressions of me. It faded as we realised with increasing certainty that she was also on the spectrum, as well as her own mother. It faded the more I learned about autism, the more I reflected on my past, interpreting things through an autism lens and through becoming a bit more self-aware. In fact, nowadays, I find it more and more amazing that it wasn’t picked up earlier or that I didn’t immediately identify when I first came across the concept.
  • Increased sensitivity (or “why am I becoming more autistic?”) This was and still is a big one for me, and I could go into a lot of depth analysing all the potential reasons for it. It does seem to be quite a common pattern though, especially amongst the late-diagnosed. My sensitivity (especially to noises) has been on the increase for a while – a big factor that led me to seek a diagnosis in the first place – but this intensified to a whole new level post-diagnosis. Then there was a heap of other things as well, from increased executive functioning difficulties and super intense focusing on interests, to more rigorous stimming and reduced tolerance for being around people. There are probably a few reasons for all this.
    • First, heightened awareness and knowledge of autistic traits may mean I focus on them more. I’m so much more aware of how and why I am bothered by things. This is good, but may also make me more sensitive and intolerant as well, both emotionally and physiologically.
    • Second, I gained deeper knowledge about sensory processing issues and the problems it causes me leading me to use more ear protection, which I love. BUT, blocking out noises has most likely contributed to making me more intolerant due to reduced exposure and a sensitisation process and I now feel totally reliant on using ear protection in quite a few situations (I’ll be talking a lot more about this in future posts). The stress of this seems to have had knock-on consequences for my other senses too, especially visual and touch.
    • Third, I think I felt more free to be myself (whether in terms of airing varying grievances or indulging in things like special interests or stimming more), at least at home and around my family.
    • And fourth, receiving a diagnosis has initiated a big period of change in my life, if mainly only in terms of internal emotional and psychological change. Even if I wasn’t always aware of the impact, it took (and still takes) a lot of emotional and cognitive resources to process which I’m sure must be affecting my senses, executive functioning, social motivation and general tolerance.
  • Autism as a new special interest. I’d obviously been very interested in autism pre-diagnosis. But now that I knew for certain, I no longer felt the need to hold myself back. I had so many questions and a need to understand. In fact, I felt quite uncomfortable, even fearful, that I didn’t know everything there was to know. So I ordered multiple stacks of books, dived into reading and researching online, and haven’t looked back since. This has been invaluable in terms of helping me develop more self-awareness and find new coping strategies, as well as understanding others (both the NT majority and other autistic people) and in becoming more sensitive to difference and disability in society in general. It’s provided me with a strong sense of focus and purpose and connected me with a whole new community of people. Plus it’s a lot of fun! 😀
  • Increased self-awareness and seeing myself in a new light. I was initially quite self-conscious about my new identity as an autistic person, including around my close family (though this faded pretty fast). Since being diagnosed I find myself having more moments of seeing myself from other people’s perspectives. I had a pretty good level of self-awareness beforehand, but learning about autism gave me even more and, most crucially, the explanation behind the behaviour I was noticing in myself. This applies to social situations, especially. If anything, being diagnosed has made me even more self-conscious and hyper-vigilant due to heightened awareness of everything I do or don’t do and why. But at the same time having this framework for understanding has also made me care less (though I’m still working on this) and be more accepting of what I find hard, which is helping a lot.
  • Disclosing and the people around me. This was obviously huge, especially as it had deep personal implications for some of the people in my family as well. I will do a separate post on disclosure when this series is complete. For now, I’ll just say that telling my immediate family really did alter my experience, adding new perspectives and emotions and complicating the picture quite a bit. But the more time has gone on, the more we’ve talked and the more understanding we’ve developed, it’s undeniably been a very positive thing for everyone concerned.

Post diagnostic support

I saw the specialist nurse for the second time a couple of months after my diagnosis. Around this time I still felt some regret at how I’d been too overwhelmed or unprepared to ask questions or seek enough feedback at my diagnostic appointment, so I prepared really thoroughly for this appointment and came armed with a few areas to query (it was still hard for me express myself at length though ☹). She did her best to answer some of my questions, but clearly it would have been better to have asked the professional who diagnosed me. It also reinforced for me the notion that I’m the person who knows myself best. Professional outsiders who only ever spend a couple of hours with you can only provide so much insight. Here are some of the things I asked about (some of which seem quite naïve or pointless in hindsight!):

– I felt a little unsettled by the lack of verbal or written feedback I’d received. I mentioned this and learned that the diagnostician had indeed written a report to my GP which I hadn’t seen (and which I later asked my GP about and was able to read 😉)

– I wanted to know more about the rationale for the diagnosis, so I could get an outsider’s perspective on my autistic traits which might help inform my own self-understanding.

– I was pretty concerned around this time about where exactly I fell on the spectrum. I kept wondering “exactly how autistic am I?” How do I compare with all the other people on the spectrum she’s met? At this early stage I also felt a bit weirdly but understandably self-conscious about “appearing autistic”. It can be hard to have complete self-awareness about this, so I was quite interested to know her thoughts being a trained eye. She quite rightly made the point that you can’t necessarily tell from appearances or outward “functioning” how autism affects a person internally. I now realise this is a pretty impossible question to answer anyway really

– I wanted to question her about the fact I feel I don’t identify much with some common traits (like the ability to read people) and if it was normal to have quite big areas you don’t feel noticeably affected by. She said it absolutely is and kept reiterating how very different all the autistic people she’s met are from one another. You certainly don’t need to have every autistic trait to be autistic. Apparently she’s met some autistic people who are even “better” in certain stereotypical areas (such as eye contact) than some NTs, especially women – some of whom camouflage so well you’d never think “autism” in a million years

– I wanted to ask her if she’d heard similar things from others about some of my experiences, like constant conscious processing of social situations. We talked a bit about a few different aspects of autism and how things like social anxiety, intellectualising, self-awareness and intelligence could be linked.

– I told her about my concerns with sensory sensitivities getting more intense. She said stress would be quite a common reason for this, whilst a simple lack of awareness could explain their seeming absence when I was younger.

I realise now I couldn’t necessarily expect her to give me all this information. At this stage I was at my height in terms of wanting to know things and meet and learn things from others. Yet I felt I was lacking information and answers. At this point I still hadn’t done enough research to develop a fuller understanding of a lot of aspects of autism, or even met any other autistic people. Now, thankfully, I feel a lot more informed (or I at least understand enough to realise that some questions can’t really be answered anyway).

The specialist nurse also asked me a bit about the impact of receiving a diagnosis. I tried to explain some of my emotions, but this was very hard to do at length. She talked a bit about the positives commonly associated with autism and how she envied some of them. I talked about disclosing and finding out my parents also have high levels of autistic traits. She was very pleased that I’d finally told them! I told her how obsessed I’d become with autism and she asked if I had any recommendations for her book list. I fed back about the service, saying I was very grateful for it, but that it could be improved through providing written feedback (which surely should be standard practice?). And finally she referred me to a couple of autism services and also suggested I see an audiologist about my noise hypersensitivity. All in all, it was quite interesting, even if it didn’t fulfill my overly high expectations.

Autism diagnostic assessment

Copy of Copy of Vantage Points

The day of my autism diagnostic assessment was to be one of the most important days of my life, and I knew it. I knew that it could potentially change things forever and I had a million thoughts and feelings swirling around by mind and body. But, rather ironically, there was so much going on inside me that it actually made it hard to really think or feel much of anything. On the day, especially, I was in quite a daze, not really feeling properly in touch with myself and sort of on auto-pilot mode so that I could get through. It’s a little hard for me to convey the experience and do it justice, especially since it’s now been 13 months since that day and the associated memories and feelings are (finally) becoming a lot less raw and intense. Then again, perhaps the greater sense of perspective and detachment that time brings will help me write with more clarity. I’ll go through the day chronologically, doing my best to convey what I can remember. Before we start, a word of warning: this post is awfully long!

I arrived slightly early for the appointment, so walked around the streets outside the building for a few minutes before going in. I wasn’t quite sure where I was going (not a good situation to be in at such a time!) so consulted the signposts just inside the entrance before making my way up to where I thought seemed the most likely place. I started to get a little worried when there wasn’t any obvious entrance way or person I could ask. But then, by pure chance, I saw the person I was supposed to be meeting with (recognising him from a photo I’d seen) entering the escalator to go down to the ground floor, so I followed suit. It was then that it became clear I should have reported to the main desk in the lobby on arrival. I couldn’t believe how I’d overlooked the obvious. Anyway, I eventually ended up in the right place, only a couple of minutes late.

/

The structure of the appointment

I met with a professor of psychiatry at the local university. He does research work in autism, along with other neuro-developmental conditions, and he’d set up a dedicated adult assessment clinic in the city where I live a few years ago. He was clearly well qualified and experienced and I felt glad to have ended up where I did. The first few moments were all a bit of a blur as he led me to the assessment room. I waited there for a few minutes whilst he went to fetch some notes and I used the time to make myself comfortable and get used to the room a bit.

As we began I was slightly surprised that all he had in front of him were a few pieces of blank paper. Having spent a fair amount of time researching the diagnostic procedure, I was expecting DSM/ICD criteria, checklists, schedules, perhaps even the DISCO to be laid out on his desk. This was a little disconcerting, especially as I’d read about how extensive and intensive some diagnostic experiences can be. But after all, this was a free public health service provision not a fancy private evaluation that might involve thousands of pounds and hours of neuro-cognitive testing. Some time after, I also read that reliance on diagnostic tools can actually be a sign of inexperience. I thought about this and realised it made perfect sense: the more experienced the professional the more they’ve internalised the diagnostic criteria and all the relevant questions, so they don’t need the external prompts. Having talked with hundreds, perhaps thousands, of autistic people, experienced professionals build up an internal schema of what to look for. Perhaps they can even rely on their intuition or the feelings they get from the interaction which, whilst not exactly scientific, I’m sure is probably quite a good guide.

He asked me a couple of basic questions to start off with. Based on reading my copious notes he joked that I probably know more about autism than him (at least I assume it was a joke!). He asked why I was seeking a diagnosis. I replied along the lines of “I can’t just go about my life without knowing one way or the other for sure” which he said is completely understandable. Then he explained the format of the assessment, what would happen and roughly how long it would take.

He’d read some of the notes I’d emailed over and said this had given him “a pretty good idea, so it shouldn’t take too long”. Whilst not explicit, this made it quite clear what outcome he was alluding to, and I felt some degree of relief and hope. But I still didn’t take it fully onboard, I couldn’t be sure and needed to wait to hear it said directly, in no uncertain terms. I found out some time later that the specialist nurse from the pre-diagnostic appointment had told him “she has Asperger’s!” beforehand. My AQ and EQ scores were also strong indicators, so he already had a lot of overwhelming evidence. But still, it was important to go over things face-to-face.

/

What we talked about

First, he took a developmental history, which is self-explanatory but important and it took up most of the session. He acknowledged the fact I hadn’t wanted to involve my parents at this stage which he said was fine. I did have information about the major early milestones and he highlighted the fact I never crawled, whilst everything else was in line with typical development. My main autistic trait growing up since starting nursery was general quietness and shyness with almost everyone outside my immediate family. I did have a few sensory sensitivities, but not to the extent that they were hugely noticeable and I certainly wasn’t aware of them at the time. One interesting trait is that I’ve always had issues with handwriting which I’d never understood until I found out about autism and how it can cause fine motor difficulties. I was told off a few times at school for holding pens incorrectly and still today I struggle to write more than a couple of pages without quite a lot of pain and messiness.

The professional noted that I’d been “extremely well behaved” in most situations, especially school. He also asked about imaginative play. Whilst I didn’t have evidence that I didn’t engage in it, I described my favourite childhood activities (usually quite physical and playing with real objects in a concrete way like with nature, art, sport and building things) and how I find things like acting and make believe hard today. We went through a bit about school, how I felt about it (“quite neutral”) and the academic side. Then he asked about my time at university – the group work, presentations, how I found living in London and the challenges I’d had during a few trips abroad (especially one group fieldtrip where it was virtually impossible to be alone for more than 2 minutes the entire 2 weeks!). We also touched on a few instances of social misunderstandings I’d had, though the most prominent trait was that I preferred to keep to myself a lot.

(I’ll likely do a post about autistic traits in childhood at some point in the future for more details on all this.)

Next up, we moved on to discuss my current autistic traits. Inferring from my notes, he asked if I tend to keep myself to myself. He asked how I’d feel about going to a social event where I didn’t know anyone. Surely this would unnerve most people though? Even if I knew the people I’d still be anxious. He also asked how I feel about small talk.

In relation to repetitive and rigid behaviours, he said my routine appears to be quite fixed and it seems to have become more so with age. He asked how I felt about changes growing up and now. My memory is hazy, though I definitely remember feeling unsettled by big events like moving house and schools, though all this was probably internalised. He asked if anything else makes me anxious besides social situations. I said “big changes” – normal for most people of course, but probably to a greater intensity for me as with a lot of others on the spectrum. I can find smaller changes a bit irritating depending on the situation, but I tend to be quite pragmatic and dealing with them isn’t a major issue for me.

He brought up the common autistic trait of making literal interpretations and asked if I thought this applied to me. I had noted down some examples where I’d recently taken some metaphors literally which were quite telling, but unfortunately forgot to mention them at the time. He tested me with two of his own proverbs, asking if I knew what they meant. The first I did as I’d heard it before, the second confused me greatly, though this was largely because I hadn’t clearly processed the actual words he’d said. In the subsequent written report he noted I had “some slight difficulty with over-literal interpretation of proverbs”. In relation to jokes and sarcasm I explained how I can be a bit slow on the uptake, but the main issue is not one of understanding but of externalising the appropriate response (not knowing what to say, along with the expected non-verbal side of acknowledging, smiling or laughing even if you don’t really find something funny, or even if I do).

We didn’t directly address special interests, though he picked up that I liked to read a lot (exclusively non-fiction) and that I’d really enjoyed certain TV programmes growing up, like Friends (which I watched religiously every afternoon after school). He asked whether there are some things I can talk more about than others. I said yes, obviously, like anyone, but I’m not the sort of person to go off on long monologues (though I do seem to be doing that a bit more nowadays since acquiring my autism special interest!).

He asked what I think my parents think about how I’m doing (adding that this might sound like a bit of an odd question). I was able to answer this well. But having autistic tendencies themselves, they’re perhaps less concerned or notice certain things less compared to what more neurotypical people might think or say. This is a point which he brought up, asking if my parents “are a bit like me as well”.

Towards the end, he asked if there’s anything he’d missed or that I want to add. We hadn’t discussed sensory issues at all up to this point, so I brought it up, emphasising how it’s a big issue for me. He said I was quite right to bring it up (so I’m sure it just slipped his mind, and he is actually aware how core sensory issues are for a lot of autistic people). We touched on noise hypersensitivities, deep pressure seeking, clothing preferences and habits, touch sensitivities, bright lights and issues with food textures.

I also mentioned executive dysfunction which was a bit of a grey area for me in terms of understanding whether or how I’m affected. I listed a few areas like multitasking, working memory and transitions. He didn’t seem majorly convinced for some reason, saying “I believe you when you say you can’t multitask, but leave the rest to cognitive testing” (slightly confusing as there were no cognitive tests to come…)

Finally, he asked if I’d ever seen a psychiatrist before, along with what I presume were a couple of screening questions for schizophrenia and OCD. He asked if I’d ever experienced any depression. In the follow-up he seemed to think it was quite notable that I hadn’t, saying this might mean I must be quite resilient. He added I should perhaps keep an eye out for anxiety and depression in future as they are more common on the spectrum, but then (perhaps seeing my expression) hastily added “but there’s no reason to think they will…!”

/

What we didn’t talk about

An overwhelming feeling I got from the appointment was one of regret and slight frustration at there being so much I didn’t talk about (although I was greatly consoled by all the written information I’d been able to provide). It was very hard for me to gather my thoughts in the moment, let alone express them at any great length. So I mainly gave quite short responses to all his questions and in the subsequent written report he noted I displayed “little spontaneity of speech” which was spot on. Thoughts and words just weren’t flowing that well, as they often don’t for me in many social situations or under stressful circumstances.

There were a couple of questions in particular where I wasn’t able to give much response, partly because they’re quite complex and hard to answer, but also because I had so much to say about them it was hard to even know where to start. One question in particular, “do I find it easy to tell what people are thinking or feeling?”, was quite tricky. I think I said something like “I get vibes from people…”. He asked whether I usually turn out to be right about these. All I could think to say was “I don’t know…”, to which he said something like “don’t worry, that’s fine”. With quite wide, vague and complex questions such as this, and where it can be hard to have self-awareness, I think a bit more probing, prompting and attempts at discussion would have helped.

I was a little surprised that things like non-verbal communication (especially my own) and stimming weren’t mentioned. But then I realised that these are most likely outwardly visible to him (especially in such an intense situation as this one), so there was simply no need to ask, he could just see right in front of him. There was certainly some stimming going on, my eyes were probably wandering about a fair amount and I felt kind of frozen. Also, at one point when I was rubbing the back of my neck and shifting around in my seat to get more comfortable he asked if I was okay. And at the end of the questioning he said “torture over!”, so… yeah.

/

A few thoughts on the interaction

As I already mentioned, it was hard for me to talk spontaneously or at length. Obviously I was very overwhelmed, but I also felt there was a lack of space for me to be able to think and elaborate. A lack of silences, with too many questions being fired at me and not enough probing or simply waiting. It’s common for me to feel this way though, and perhaps he wanted to simulate as typical an interaction as possible to assess how I usually am. There were also a handful of times where I either didn’t hear a particular word or phrase that he was saying (it just sounded like gibberish to me) or I heard it but only processed the meaning a few seconds later, when it was too late to respond – slightly unfortunate!

One interesting thing about the appointment is that there was a fair amount of small talk on the part of the diagnostician, along with smiles, occasional laughter, a few jokes and some instances of saying things that weren’t entirely true or serious. I felt a little unsettled or confused by some of this, especially the slight tangents where he’d mention something about his own life. I’d expected to be very much focused on the task at hand given the limited time and its potentially life-changing impact for me. I found it quite distracting when I was trying to focus on all the information I wanted to convey! It was also slightly awkward as I found it hard to respond to instances of him doing these things, either verbally or non-verbally. I understood what he was saying, but I didn’t have a response at hand in most cases or didn’t see the point in going down the route of following up on comments he made about his own life.

It was only a few days later that I realised what he might have been doing: that the small talk and talking about himself was potentially some sort of test to gauge how I would react. It could well be a standard part of his assessment process to see if and how people engage (unless I’m over-interpreting everything and he’s naturally like this as most non-autistic people are). I definitely passed (as in “is autistic”) with flying colours!

/

The outcome and my reaction

After the professional was finished asking questions and without beating around the bush he said to me, “I agree with you, I think you’re right”. It took me a second or two to realise he’d just told me the outcome of the assessment. Then my stomach dropped, or my heart soared, or my head exploded – I’m not quite sure what exactly, but it all happened internally without much external reaction. I think there was a massive wave of relief, but mainly I felt pretty numb and shocked. This was the moment I’d been waiting for, now I knew for sure, this was it: I was autistic! It’s difficult to remember how I felt in the minutes after receiving the news. Was I happy? Did I feel like bursting into tears? Was I exhausted, dizzy, disoriented? Or actually feeling quite calm and serene? Perhaps some combination of all the above; it’s honestly hard for me to recall these moments. I was trying hard to focus on the rest of the interaction and the information I was being given. It was all so much to process.

The professional went on to say that I “didn’t have childhood autism*, which is good”. He didn’t explicitly say what diagnosis he was giving me and I wished I’d asked as I had to wait a few weeks before seeing “has been diagnosed with Asperger’s Syndrome” in writing when a letter came through the post. He added that “it’s quite clear in you” whilst in some others it can be harder to spot the autism, particularly if there is overshadowing by things like depression. (*By “childhood” autism he meant classic autism involving language delay, as opposed to Asperger’s. Slightly misleading of course as aspies or autistics without language delay are still autistic in childhood, whilst “childhood” autism as in classic autism can and does persist into adulthood.)

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The follow-up: what he said

It was all a bit of a haze as I sat there and tried to focus on what he was saying for the next 20 minutes. It’s hard to recall all the specifics now. Even at the time and in the immediate aftermath a lot of it simply washed over me. I was still stuck on having heard the outcome. I needed time to digest it, my brain was saturated, it didn’t want any more information. I do greatly appreciate all the information of course. It’s the right thing to do. You wouldn’t want to hear “yes, you’re autistic, ok thanks for coming, bye now”. It was just a lot of things to assimilate all at once.

Some of the things I do remember him saying, include the following… He said “you don’t have a disease”. This was somewhat shocking! “Do people in this day and age think of autism as a disease?”, I thought, because I certainly didn’t. He also said “you’re still the same person” (perhaps because I looked a bit shocked/overwhelmed). He touched on the causes, saying there are many pathways, but genetics plays a big part. From some of the things I said during the interview it sounds like it may be something to do with my parents in my case. He mentioned how autism is characterised by differences in the social brain, but that different people have greater or lesser difficulties in various areas. He also touched on male/female prevalence, the fact he’d recently bought Rudy Simone’s Aspergirls book, and how he agreed with me about some of the questions in the AQ being slightly biased. He talked a bit about what can happen next in terms of post-diagnostic support, mentioned an autism charity in town that runs social groups, made a request for me to participate in a research study at the university, and explained how the diagnosis might help me in future with things like employment.

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The follow-up: what I said

Not a lot, barely anything actually! And this is the one thing I’d change about the experience, because it developed into a feeling of regret and missed opportunity in the following days and weeks. In particular, I felt I could have really done with some more verbal feedback explaining the rationale for the diagnosis. Even though I understood why I was being diagnosed (and would have questioned any other conclusion!), I think it would have been nice just to hear things verbalised and made more explicit to help it sink in. He could have summarised what I’d told him and what he’d understood and, even better, offered more analysis and insight from an outsider’s perspective – what he sees as more or less important, what affected his decision most, and so on. Basically I wanted to hear an explanation of how I couldn’t not be autistic!

I did ask him a couple of questions: What percentage of people in his clinic end up with a diagnosis, and also whether they see many females. Each time he asked me “why do I ask?”, in a very nice way, but perhaps the questions did strike him as a bit irrelevant. It definitely wasn’t the information I needed most at that time. Why did I ask these questions given all the much more potentially useful points I could have raised? Well, I hadn’t thought to prepare any questions (my brain hadn’t allowed me to think beyond hearing the diagnostic outcome because it was so hyper focused on that moment). And yet I knew I had an inordinate amount of questions and need for information inside me. I just couldn’t process or think clearly, so my brain just came out with what it did!

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The immediate aftermath

The diagnostician said “it was nice to meet you” and I thanked him as he showed me out the building. As I stepped outside it was like stepping into a new world, cheesy as this sounds. I felt very bizarre, like I was a different person in some way. I couldn’t look at all the people around me (too overloaded), I felt too many eyes on me and became self-conscious about how these strangers were perceiving me. Could they tell I was different in some way? I was thinking about myself differently and assuming others might be as well. Of course, I appeared and acted just the same as always, but inside I felt weirdly free, validated, relieved and happy that I finally had answers.

The town centre was too much, too noisy, too busy. I was in a complete daze and went to wander around the park a bit before making my way home. I determinedly avoided seeing anyone and went straight up to my room isolating myself for as long as possible. I had an unstoppable urge to write things down (which marked the start of an enduring habit ever since), thought a lot about how I would tell my parents the next day and then went to bed shattered and overcome by too many confused and un-/semi-processed thoughts and feelings.

To summarise this rather long post: Minus a bit of regret and frustration on my part at finding it hard to talk at length, it had been a pretty positive experience. The build-up period and anticipation had been going on for so long, I felt a bit sad it was all over. I was slightly disappointed the appointment hadn’t been a bit longer and more in-depth, involving more feedback from the professional about my traits and the rationale for the diagnosis. But all in all, it went well, I felt lucky to have avoided any difficulties along the way and most important I got the outcome I was looking for. After so many months of waiting, it was over. And whilst it would take me many more months to process what had happened (segments of the appointment were going round and round in my head until about 6 months later), it was now time to move onto the next stage in my autism journey – post-diagnosis!

Preparing for a diagnostic assessment

Copy of Copy of Copy of Vantage Points

In this post I’ll be discussing the period leading up to my diagnostic appointment – how I prepared in practical terms, some thoughts about how I was feeling, along with a few tips about the process more generally. Some of this might resonate with other people’s experiences or hopefully provide some insight into what it can be like for those considering diagnosis. Of course, this is just my experience – things can and will be different for others depending on a whole host of factors. I’ll try to keep it (relatively!) brief as a lot of what I’ve said in the previous posts in this series applies to this phase of the diagnostic process as well.

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Emotions!

The months and weeks leading up to an autism diagnostic assessment can obviously be a very anxiety-provoking time. And not only because it presents a potentially life-changing outcome that would be a big deal for anyone… Most of us undergoing the process are indeed on the spectrum or at least have some autistic-like traits making us more prone to anxiety in the first place. Some of the reasons for this anxiety might include: uncertainty over what to expect during the process, the unknowable nature of the outcome, the often mixed, complex and confused emotions, social anxiety around talking to people especially about such sensitive issues, as well as practical concerns around where you need to go, when, for how long, or completing forms and procedures as part of the assessment process.

As I previously mentioned, my dominant emotion by far was one of fear at potentially not receiving a diagnosis. Whether this be through the psychiatrist revealing that actually I can’t be autistic for x reason. Or through actually being autistic but not having the truth revealed – either through failing myself to convey enough information of the right sort or through the diagnostician being uninformed or prejudiced in some way. Above all, I was very uncertain about the sort of person I might encounter. Not because I had any particular reason to be apprehensive – my experience of the process up to now had been quite positive. I’d just heard second-hand about quite a few horror stories by this point and I think my mind was automatically preparing itself for the worst case scenario… just in case.

I also had some legitimate doubts feeding my fear that I wasn’t in fact autistic. There were several areas of the autism profile which I felt didn’t affect me a huge amount, or at the very least I was uncertain whether or not they did and lacked supporting evidence to be able to say one way or the other. Here are a few examples of where this applied for me:

– Theory of mind and reading people: I felt (and still feel to an extent) I didn’t have too much of a problem with interpreting non-verbal communication (obviously a core autistic trait). But I’ve since learnt from hearing about others’ experiences that this may be a case of not knowing what you don’t know, i.e. not having the “normal” experience to hand to be able to compare with your own and thereby understand what it is you might be missing. (This is something I’m very keen to discuss in more depth in a future post.)

– Then there was executive dysfunction which I truly felt was not a significant issue for me, especially compared to the difficulties many autistics can have in this area. It definitely wasn’t a noticeable issue for me growing up, but it has become more apparent in the past few years and months especially. I’ve also learnt a lot more about EDF in the year since my diagnosis and I’m realising how it can manifest in me, even if it is usually quite subtle and lessened through compensatory strategies.

– I even had doubts about special interests! I wasn’t particularly obsessed with any topic growing up. But I think this was because I was very focused on academics and probably adopted a couple of school/university subjects as special interests (which would make this behaviour seem less noticeable or odd to myself and others). I have had strong interests in more recent years, but still not to the extent I’d consider diagnostic. Ironically, around the time of my assessment I was fast developing a very intense interest in autism. But this was in its early stages at the time (only with hindsight can I see how it’s developed into an obsession), so I didn’t think to mention it to the diagnostician.

So I had doubts about whether I met certain core criteria. But what I’ve increasingly realised since, is that that not every autistic person has every trait, especially not strongly, not even the major ones. Despite these doubts, I knew that so many autistic traits did fit. And the explanation of autism overall somehow just felt so right. If this is also the case for you, don’t worry if there are a few characteristics here and there that you don’t identify with much or even at all. There could be all sorts of reasons for this: not every person has every trait, your difficulties could be very subtle, you could be camouflaging, well-adapted or well-supported, or you could simply lack self-awareness!

Despite the worry, I also had a lot of positive emotions around this time. This included excitement at having found a potential explanation. I was reading and watching a lot about autism and feeling a strong sense of validation and connection in relation to what I was hearing and the sort of people I was seeing. Looking back, I also seemed to be in a bit of a haze during this time, perhaps not fully aware of the implications of where this could be leading. I think I was very focused on the short-term and either couldn’t or wouldn’t let myself see much beyond the assessment in order to prepare myself for the eventual outcome. It’s understandable really as I just didn’t know what was going to happen and couldn’t seem to hold both potential scenarios (diagnosis / no diagnosis) and their implications in my head at the same time.

 

The people around you 

Another great way to help strengthen your case and calm your nerves is to talk with those close to you. It’s likely parents will be involved in the assessment itself, so it’s probably a good to discuss your thoughts and emotions together beforehand. However, this is not how I went about things at all…

One notable thing I did was to keep my autism knowledge and suspicions all to myself – from the time I first encountered the concept, right up to receiving a diagnosis. I didn’t tell anyone, not even my immediate family, what I thought I knew or what I was doing until the day after I received a diagnosis. So I spent around 18 months keeping everything to myself. This is perhaps a little unusual and I wouldn’t necessarily recommend it to others (especially if they feel they’d benefit from some sort of external support or validation), but for me it felt very right. I don’t regret going about it this way and I’d do it the same way again.

So what were my reasons for this? Being a very introverted and introspective person, I tend to need plenty of time to process things in my own head, and this is often a lot easier without any outside interference. I was worried that bringing others in at this point would overwhelm me and somehow make it harder to think and feel things in a clear, natural and unbiased way (perhaps this in itself has something to do with being autistic!). I needed time to get used to the idea and to figure out how I felt about it. It felt like a very natural thing to do, I felt very happy during this time, so I just went with it. I knew that I absolutely would be telling my family if I did receive a diagnosis – and I was excited (though very apprehensive) to do so. So I didn’t think there was anything too wrong with me taking a bit of time to live with the idea in my own head for a while.

On the slightly more negative and fearful side of things, I also had a lot of doubt about my suspicions, especially in the early days, and I felt I wanted to be sure before telling anyone. I think I feared embarrassment if I turned out to be wrong about myself, and perhaps even being accused of searching for problems where there weren’t any or of exaggerating my difficulties. I didn’t really have any history of discussing these sorts of issues with my parents or even of us acknowledging there were any issues (perhaps because they are both pretty similar to me) so it all seemed like venturing into very new territory.

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Practical preparation

Undoubtedly the best way to quell any fears in the lead up to a diagnostic assessment is to do a lot of research to develop both your understanding of autism in general and how it manifests in yourself particularly. Of course, not everyone will want to go this route, perhaps for fear that it might lead to overinterpreting behaviour or creating self-fulfilling prophecies. But if your suspicions are strong and you feel a diagnosis would really help, it’s worth fully investigating for yourself and doing the work to give yourself the best chance of getting the right outcome. Basically, it’s worth trying to make the diagnosis yourself beforehand. After all, nobody can ever know you as well as you and, especially if you do the research, you stand a very good chance of being right about yourself. A lot of adults are virtually self-diagnosed by the time they seek professional confirmation. Hopefully the diagnostician will be good, asking the right questions, listening carefully to your responses and knowing what to look for, but you never know, so it pays to come well-prepared and ready to make your case. 

If you’ve followed the steps to discovering your (potential) autistic self, the next stage is to convey the information to the person assessing you. Obviously most of this takes place verbally, although I’d definitely recommend bringing a few notes if you think this will help remind you of key things to say. I took this to extremes in my own case, coming armed to my appointment with a hefty stack of notes. I’d initially written the notes for my own benefit and my eyes only. But a couple of weeks before my assessment I began worrying about how I was going to convey this information to the psychiatrist. I knew I’d be very nervous and overwhelmed because of the potentially life-changing nature of the occasion combined with the simple fact of being in an unfamiliar setting with a stranger talking about such personal issues. I had doubts I’d be able to do justice to everything I wanted to convey, so I thought I may as well bring along some written information to make things a little easier. You might feel the same, especially if your assessment service doesn’t provide any opportunity to provide written information as part of the process (e.g. through completely an open-ended questionnaire).

In case you’re wondering what my notes looked like, here’s a description. The document contained two parts – the first listing my autistic traits, the second outlining a developmental history describing some of my experiences at various life stages. I came up with some headings for major autistic traits and then explained how I thought they applied to me, along with providing some specific examples where I could. These included areas such as sensory sensitivities, relationships, communication, behavioural, cognitive and physical/motor issues, along with a note on the extent to which these affect my life. To be fair, I also mentioned areas where I felt I didn’t fit the conventional description of autism, or where I was unsure – I wanted the right outcome after all! For the developmental part, I was able to write about my teenage and young adult years no problem, but I had a lot more blanks when it came to my younger self. I did manage to ask my Mum a few questions about this without mentioning autism and this discussion proved to be quite fruitful, though I do think it raised her suspicions a bit! As the document ended up being so lengthy, I then wrote a greatly condensed one-page summary which still managed to capture the essence of what I wanted to say, but which would be much faster to read should the diagnostician not have the time or inclination to go through everything else.

In sum, diagnosis can be a very uncertain and anxiety-provoking time, as well as extremely exciting, thought it all depends on the individual, their personality, past experiences and particular circumstances. Try to prepare yourself emotionally beforehand and throughout the process. Doing plenty of research about autism, expanding your self-knowledge along the way, preparing notes for your appointment and seeking support from those around you can all help immensely. Informing yourself about diagnostic procedures in general and trying to obtain information on the details of the specific pathway(s) open to you will also help combat the uncertainty. Reading about others’ experiences, diverse though they are, can help with this. The actual diagnostic assessment will be the subject of the next post in this series.

Seeking a professional autism diagnosis

Copy of Copy of Vantage Points

There are many different paths to arriving at a professional autism diagnosis. Some people are already convinced of their autistic identity, and seeking a diagnosis is simply to validate and confirm what they pretty much already know about themselves. Others may go into the process much more uncertain, on the fence and perhaps confused by the potential overlap with other conditions. They may have done little research (and chosen to do this because they feel too much investigating could potentially bias their own perspective) and be very much relying on hearing a professional’s interpretation. For others still, a diagnosis is sprung on them and all of the associated processing has to take place in the period after. For me, it was a mix of the first and second scenarios. It was very much a case of growing realisation and commitment whilst going through the process itself. This wasn’t because of what I learnt from the professionals along the way (they didn’t say much I didn’t already know really), but because the reality of the situation spurred me to do increasing amounts of research, develop my self-understanding and to take the possibility increasingly seriously, until I reached a point within a few weeks of my diagnostic appointment where I was almost entirely certain and just needed that external confirmation to remove all doubt and make it official.

In this post (along with the next couple), I discuss my experiences along the autism diagnostic pathway. As with most things concerning autism, experiences are highly specific to the individual, in this case influenced by my age, personality (which affected how I went about it and responded) and where I live (diagnostic provisions are still quite variable, especially for adults). The diagnostic pathway varies considerably from person to person, place to place, so this is by no means a representative picture. It reflects the experience of a 20-something female living in a large city in the UK where there happens to be a specialist autism diagnostic service for adults. I count myself as having been very lucky with my experience, but unfortunately it’s all too common for people to face significant hurdles to getting a diagnosis, including lack of understanding and misdiagnoses (especially for females), expense, long waiting lists, miscommunications and general uncertainty or a complete lack of provisioning. Despite the potential difficulties, if you feel an autism diagnosis fits you and would be of benefit in your life, it’s you’re right to seek a diagnosis and it’s well worth trying (and keep on trying) for where it will hopefully lead, even if it takes years. I’d love to hear about other people’s thoughts and experiences around diagnosis in the comments below so we can gather a range of perspectives.

 

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The diagnostic pathway

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Stage 1: See your GP

My first step was to talk to my GP about autism… except for the fact I didn’t actually mention autism to her at all, yet still managed to get referred to where I needed to go. I was apprehensive about mentioning the A-word. It would have been the first time uttering my suspicions to any living being whatsoever (besides my cat). I was prepared to do it, but decided to start off in a more indirect way. I think I was interested in seeing whether the GP might think of and mention autism spontaneously in response to a couple of the things I was saying. I mainly talked about my significant and worsening noise sensitivities and a few physical health complaints all of which she seemed to take quite seriously. She asked me how I was feeling in myself, I said “fine”, but she didn’t  waste time in referring me to the community mental health team (although I didn’t know this is where I’d been referred to at the time). It might seem a bit odd or annoying that autism is dealt with in a mental health setting. Even though lots of autistic people do have co-morbid mental health conditions, autism is not a mental health problem, but this is just how things are done, and where autism best fits in the way health services are currently structured. In hindsight, I think she mainly picked up on (and exaggerated) some changes in diet and weight that I’d experienced as this was mainly what the CMHT quizzed me about when I saw them.

My experience is perhaps a little different to most, in terms of being quite indirect, but I still managed to end up where I needed and wanted to be. There’d been no need to mention autism to progress to the next step, and being nervous about doing so meant I didn’t bring it up at this initial stage. However, I think it may have been good to mention it to the GP: it might have made things a little clearer and faster in the second stage (although it still ended up going remarkably smoothly for me). It’s also the case that indirect styles can suit autistic people who are feeling overwhelmed and perhaps going about it in this way made the whole thing less scary and was what actually enabled me to get through the initial stages of the process.

Quite a few undiagnosed autistic people (perhaps even the majority) are already involved in mental health services, and their first step would obviously be to mention autism to their psychiatrist/psychologist/therapist. Given my own experience, I can’t add much about the potential responses of non-specialist professionals. From what I’ve heard it seems to be quite variable, depending on each professional’s level of autism knowledge as well as their personality and how much time they actually have for listening to and seriously considering the concerns of the people they’re trying to help. Some may have an understanding of autism that extends to the adult and female-type presentations, including an awareness that superficial external appearances may not reflect internal experiences, others may be less well informed in this way. I’d recommend taking a page or two of clear, well-organised notes on why you think you might be autistic. It may also help to do a bit of research online – the advice on adult diagnosis from the National Autistic Society is a good place to start. Professionals – especially those you’ll encounter at the primary stage, who probably don’t know a huge amount about autism – should never dismiss your concerns and be willing to refer you onto specialists who know more. Just make sure you come prepared. Bring someone with you if you think it might help your case or communicate your concerns. And don’t give up if you hit road blocks.

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Stage 2: Mental health services

After a 3 month wait, I met with a couple of community support workers to discuss the concerns I’d raised to the GP – none of which I’d specifically related to autism in any explicit way. I adopted the same approach as with the GP: I decided to wait and see (rather naively perhaps) what questions they might ask, their reactions, whether they might bring up autism of their own accord. At this stage, I was still very uncertain and overwhelmed by the whole thing. I couldn’t quite believe in myself that I might be autistic. It felt somehow quite absurd, even though it made a lot of sense whenever I thought about it logically which was why I was doing this. I also worried about being heavily questioned, laughed at or dismissed in some way. I didn’t want to be wrong about myself, or to have this potential explanation taken away from me. Also, I knew that mentioning autism to another human being (even a stranger) would suddenly make the whole thing so much more real, something existing in the real world and not just a possibility floating around in my head that I could pretend didn’t exist for a while if I wanted. So on the one hand, I feared that the possible explanation of autism might be taken away from me. On the other hand, I was worried about my potential autistic identity becoming and feeling very real through talking about it to people in real life. I wanted it to be real, at the same time I didn’t want it to be real. I think really I wanted it to be real, but was just scared.

Mainly I still had a LOT of doubt about my suspicions. This was mainly because my knowledge of autism was still not huge, far better than the average person, but nothing compared to where it is now and still could be in the future. This doubt would have been greatly alleviated if someone had mentioned autism to me organically, rather than having to bring it up myself. But this was a rather unrealistic thing to hope for and despite mentioning a few autism-related issues (sensory sensitivities, social issues), it didn’t happen. And so towards the very end of the appointment I brought up the possibility of autism up directly. There wasn’t time to discuss much in detail. The support workers asked a couple of follow-up questions (like whether I find it hard to connect with people, what it would mean to get a diagnosis), then time was up and they left it there and said they’d discuss it with the doctor. For whatever reason, at the time, I didn’t think it would amount to much. I think I also found it very hard to read their reaction – whether they were surprised, curious, convinced or whatever – to me they just seemed quite blank! So I was not much the wiser…

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Stage 3: Specialist autism assessment service

I sort of forgot about the whole thing for a few weeks, until I got a letter in the post form the CMHT asking me to fill in the AQ-50. I completed the screening test, scoring about 38 and promptly sent it back to them. Then I received another letter saying I’d been referred to another CMHT, but I was unsure about why this was or to whom I’d been referred. It took another couple of months before I then heard from the new place I’d been referred to and I was completely shocked and scared, yet very excited, happy and grateful to realise it was a dedicated autism assessment service for adults. I’d had no idea up until that point that such I thing existed (and it hadn’t until only 3 years earlier). The letter invited me to attend a pre-diagnostic appointment in a months’ time.

I didn’t do a great deal of preparation for this appointment, at least not by my standards. I think I was still very much in a speculative stage, not entirely invested for some reason, and perhaps not fully considering what a diagnosis might mean for me. The specialist I saw started by asking me why I was seeking a diagnosis. (I don’t really get why professionals are in the habit of asking this – isn’t it self-evident that it’s because the person thinks they are autistic and if they think this it makes sense they’d want professional confirmation to know for sure?) I just said I’ve noticed quite a lot of autistic traits in myself and we launched into a discussion on these. I’d prepared a couple of pages listing my main autistic traits, which she seemed to find interesting. It helped to have the notes to hand as the specialist read through them then and there and asked me some clarifying questions about each point which gave the discussion structure. A big concern I had at this stage was that they preferred parents or other close relatives to be involved in order to help with the developmental history taking, but I was adamant that I preferred not to tell anybody at this time (I’ll explain more about this in the next post).

Again, I had difficulty reading the specialist for signs of whether she thought I might be on the spectrum or not. But in hindsight, I think it was fairly obvious she thought I was. She went away at one point and came back with a whole bunch of leaflets and asked if I wanted to be referred to a couple of autism advice/support services… a pretty clear indication really! Still, for some reason I didn’t pick up on this at the time or even in the weeks after. Perhaps I was still clouded my so much doubt and fear of having the explanation taken away that I wouldn’t let myself believe it until a professional explicitly said to me, “yes, you are autistic”.  And so I spent the next 4 months being pretty anxious about the possibility of not receiving a diagnosis.

It was only after this pre-diagnostic appointment that things really started heating up for me. Whereas before, I’d been a bit hesitant, more or less going with the flow and adopting a “just see what happens” attitude, after seeing the specialist, I became a lot more invested in the process, and to quite an intense degree. I felt I really, really qualified for and wanted a diagnosis. I started doing a tonne of research which led me to make the shift from being around 50% certain, to 80% then about 95% in the weeks leading up to the diagnostic appointment. Next up, I’ll be discussing what I did and how I was feeling leading up to my diagnostic appointment, before doing a post dedicated to the actual assessment experience itself. 

Discovering an Autistic Self

Copy of Vantage Points

This is a follow-up from my previous post, “Discovering Autism”. It continues the discussion around how I gradually came to the realisation I might be autistic. Then it provides some more general information that might help others who are on a similar pathway. 

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My experience 

I’ve talked about how I first discovered and learnt more about autism as a concept in general. But why did I think that I might be autistic in the first place? If there’s one big thing that triggered the whole process for me it’s my sensitivity to noises. This is what I initially went to the GP about and it’s definitely what gave me the impetus to start talking about autism-related issues to professionals. Moving to a noisier environment than I was used to, I became increasingly sensitive to the certain types of noises I was being exposed to (namely traffic), leading me to become stressed and even more sensitive in a vicious downward spiral. After doing some research online, I came across the concept of sensory sensitivities and sensory processing disorder. I learnt how common sound sensitivity is in autism, including some of the very sounds I find particularly bothersome. I also became more aware of other sensory issues besides auditory ones – sensitivities that I clearly have but had never really thought of as a thing. They just seemed normal to me and I’d assumed most people perceived things in a broadly similar way. After that, it didn’t take me long to come to the realisation that sensory issues are actually a core part of autism. Beforehand, I’d only really thought of autism as posing social communication difficulties. So when these two apparently disparate strands came together, I was quite amazed and convinced I must be onto something.

In terms of why autism spoke to me in the first place (before ever learning about the sensory side of things): I’d certainly experienced difficulties around social aspects, although I’d never quite known exactly what the issues were or how to explain them to myself, let alone others. In short, it was seemingly very easy for others (and myself) to chalk up my behaviour and experiences to introversion and shyness. Whilst both of these ring true, there clearly was and is so much more going on – things that learning about autism brought to light in a very exciting, slightly scary and extremely validating way. It explained my difficulties making friends and holding down jobs, my passionate interests and hyper-focusing tendencies, my dislike of change, love of routine and strong need for plenty of downtime. 

You might be wondering how I felt at this point. That’s quite a hard question to answer… It deals with emotions which, like lots of autistic people, I find hard to untangle and identify for myself, let alone start to articulate to other people (although writing things down is a definite help). I will do a dedicated post later on in this series about making sense of emotions post-diagnosis. As for how I felt after discovering I was probably autistic, but before getting a diagnosis or even starting down the official pathway… I felt mainly very excited and grateful at having found a potential explanation. Very intrigued to learn more about autism. Validated and comforted to realise there were lots of other out there like me. At the same time I had quite a lot of apprehension, uncertainty and doubt about the whole thing and where it might lead.

If you’re interested, you can learn more about the backstory leading up to my own autism discovery/diagnosis over on the About page.

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General advice

If you’ve recently (or not so recently) come across the concept of autism, think it might apply to you and are in the process of learning more about your (potentially) autistic self, here are a few guidelines that may help with navigating all the information out there.

Above all, I’d say don’t just look at the diagnostic criteria. It’s written to cover the entire autism spectrum and focuses on the most stereotypical behaviour. It’s arguably biased towards children and males. (Plus the language used will make you feel there’s something seriously wrong with you!). It’s really important to complement “official” knowledge with articles, blog posts and videos, especially content created by autistic people themselves, content that provides plenty of anecdotal evidence and insight that will likely give you a better feel for what it actually means to be autistic.

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Steps to discovering an autistic self:

– Bearing the above point in mind, do have a look at the DSM/ICD criteria. Just don’t stop there. You might also want to consider researching some of the screening and diagnostic tools out there. There are quite a few, though not all of them will be relevant. A popular one is the Autism Quotient (AQ), especially in the UK where it’s used quite widely as a screening tool in the NHS.

– Read and research as much as you can. There are books, blogs and research studies galore on autism. A good mix of academic/professional information and personal accounts is best. You can check out my Links page (currently under development) for a comprehensive list of places where you might want to start.

– Adults should bear in mind that a lot of the information out there is written with autistic children in mind. Autism, of course, is not solely a childhood issue. It can, does (and must) change and present itself differently as autistic people develop. Try to think back to your childhood to see whether you might meet the criteria for the early signs of autism, but bear in mind that various traits can appear, disappear and evolve throughout a lifetime.

– Women should bear in mind that the diagnostic tools along with a lot of received wisdom on autism is based on a profile that was mainly developed with males in mind. If you were to remain narrowly focused on a list of stereotypical male traits, you might well miss your own female autism.

– Once you feel you’ve got a good understanding of what autism is and the many diverse ways it can present itself, try to gather your thoughts and focus in on yourself. I’d suggest using your knowledge to make a list of all the major reasons you think you might be on the spectrum. Perhaps share this with someone you trust so they can feedback and hopefully help you figure out if you’re heading in the right direction. It’s particularly helpful if you can talk to your parents or someone who knew you as a young child. Many professionals require (or at least prefer) to have first-hand early developmental evidence as part of the assessment process.

– If at any point you have nagging questions or concerns, or you just feel like exchanging experiences, seeking out autistic adults is a great idea. The online autism community is a large, active and well-connected one, and there are plenty of people out there willing to offer support and advice for those considering or undergoing diagnosis.

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I did all of the above quite obsessively for about 4 months or so in the lead up to my diagnostic assessment. I accumulated quite a substantial amount of notes detailing autistic traits in all their diversity, along with my own interpretations and experiences of these where they applied. I ended up showing a lot of this information to the professional who diagnosed me and he seemed to find it pretty helpful. But I’m skipping ahead! It took me about a year to go from first seeing my GP to having my autistic identity confirmed, a story that’s the subject of the next post.

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Discovering autism

Vantage Points

In this post (and the next) I discuss the pre-diagnosis circumstances leading me to:

a) first come across the concept of autism/Asperger’s Syndrome (in any meaningful detail, and beyond the stereotypical representations which aren’t necessarily that helpful)

b) come to the realisation that I was very likely autistic.

In discussing these two aspects, I’ve tried to merge my own personal experiences with more general information that will hopefully be more widely applicable to people out there in a similar situation. This first post focuses on how I initially discovered autism and then gradually broadened by understanding up until the point where I could see a lot of the traits in myself. 

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My personal experience

So, first things first, how did I initially encounter the concept of autism? Well, I knew that a thing called autism existed. I’d also been perhaps oddly quite fascinated the few times that I had encountered autism, such as when I watched the BBC documentary “Living with Autism”. Learning a little about autism and seeing the autistic people in the programme, I felt like something about it all spoke to me in some way. I felt I was perhaps a little similar to some of the people featured, but it never for a moment occurred to me that I might actually be autistic. This was largely because virtually everything I’d been exposed to (which admittedly was not much) was based around the more classical stereotypical autism – the image that most people have in their minds when they think of autism. 

That was until I discovered Asperger’s Syndrome. Again, I’d heard the word before and I think I realised it was sort of related to autism, but I knew so little of substance. Even when I did begin to learn a little more, I never seriously thought that it might apply to me. I very much had an image of a male in my mind, perhaps someone very nerdy who loved maths and was some sort of computer genius… I first properly encountered the concept of Asperger’s over on Penelope Trunk’s blog. She’s an American entrepreneur who writes about a wide variety of topics and most of her posts have nothing to do with autism, except for the fact she happens to be on the spectrum herself. I read the few posts she had written about Asperger’s. I read them for fun really and found that I really enjoyed her very open, honest approach and blunt writing style. But it never occurred to me to reflect on why I was so interested! Eventually, I happened upon a couple of her posts that spurred me for the first time towards considering autism as a possibility in myself. One contained a link to the AQ which I took (and subsequently retook a few too many times!). I was quite surprised and a little scared to see how highly I scored – far above the cut off point for a potential diagnosis. The second post was about spotting the signs of autism in women and it was this which led me to start looking into female autism specifically and start broadening my whole conception of what autism can look like.

Over the next few months, I delved further into learning about autism, developing a better understanding of how it manifests in adults, especially females. I did a fair amount of research at this time, learning the basics such as the official diagnostic criteria, the early “warning” signs of autism and taking various online tests. But in the midst of all this, what actually stood out for me most were all the small, slightly unusual things about myself that I’d never been able to explain (or that I’d even thought warranted an explanation). Things like loving to wrap myself tightly in blankets, walking on tip toes, difficulties with handwriting, occasionally reversing “I” and “you” in my head, having messy hair, not being at all feminine, having a complete disregard for fiction (despite loving to read), and on and on. I found these small discoveries to be especially meaningful, even though they might seem kind of far off the really core diagnostic criteria. I think my reasoning went something along the lines of “these things are so small and specific and sort of odd, what are the chances I’d find people writing about them on the internet if they didn’t mean something?”. It all seemed very coincidental for so many small, seemingly disparate things to be connected under one umbrella concept. So finding out these quirks I had (and sometimes hadn’t even been consciously aware of having) were potential signs of autism was actually what convinced me the most!

Three resources really stick out to me as being light bulb moments during this time, greatly encouraging me to seek a diagnosis and giving me confidence that I was heading in the right direction. First, I found watching YouTube videos of autistic adults, especially other women, to be hugely valuable. Not only did they provide useful information, a sense of validation and emotional support, but actually seeing these people in front of my eyes (albeit on a screen) gave me my first exposure of what autistic adults can actually be like. I saw parts of myself in many of them and was left with the inescapable conclusion that if these people were autistic, that meant I could be as well. Second, is the first book that I read on autism – Rudy Simone’s Aspergirls. It’s a great read and full of illuminating information, but it was the table of traits at the back that really blew me away. Apart from a very small handful of points, it was like she was describing me. The whole thing felt very uncanny and it gave me a lot of confidence about being right. The third resource that I kept going back to was the Musings of an Aspie blog by Cynthia Kim which contains a tonne of great insight and advice, especially for females on the spectrum.

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General advice when it comes to discovering autism …

How do people typically learn about autism? If an autistic person is not identified in childhood, then as an adult they might learn about the concept in some of the following ways:

– A direct, personal connection with autism, whether that be through having an autistic relative (quite often a child who’s been recently diagnosed) or perhaps even through working in the autism field.

– Learning about autism in the media, whether it be online news articles, blog posts, documentaries, films, campaigns.

Discovering autism can occur by pure chance and come completely out of the blue. Or, perhaps more likely, the person has spent some time trying to figure out why it is they feel how they do. Researching various possibilities they eventually happen upon autism as a potential explanation. Of course, the people around them – partners, family, friends, medical professionals – might bring it up to the person as a possibility as well.

Personally, I think an autistic person at least knowing they are autistic, even if this doesn’t lead onto a formal diagnosis, is a very valuable thing in most cases. This is one of the main reasons why increasing autism awareness in society is important – so that unidentified people stand a better chance of discovering their true selves. The more information there is about autism out there, the better. Luckily with the internet, it’s never been easier to learn about autism – to stumble upon it by accident or to develop your understanding once it’s actually on your radar. But a big obstacle can sometimes still remain. An unidentified autistic person may feel what they’re learning about autism doesn’t really hold much relevance to them. Even people who know about autism, and sometimes even those immersed in the world of autism (e.g. Sarah Hendrikx comes to mind) may not immediately realise that they themselves are on the spectrum. So the quality of information is really key as well, especially for adults and for females where the signs may be quite subtle and well-hidden (even from the person themselves).

In the next post, closely tied to this one, I’ll be discussing the personal circumstances that led me to consider autism as a serious possibility in myself, as well as providing some more general advice that might be helpful to others currently going through a similar process of discovery.

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Autism discovery & diagnosis series

It’s exactly one year to this day since I received my autism diagnosis (and about two and a half years since I first properly came across the concept of autism/Asperger’s Syndrome). In honour of this milestone, I’m kicking things off on this blog with a discussion on autism discovery and diagnosis, covering both my own experience as well as hopefully providing useful information and perhaps some encouragement for others in a similar position – whether you’re contemplating or trying to get a diagnosis, currently undergoing the process, or have recently been diagnosed and you’re in the midst of processing it all.

Of course, I can only write about my own experience and perspective on that experience. Every person will have their own story of discovery/diagnosis and their own unique reactions, so not all of this will apply to everyone, everywhere. I’m hoping there might be something useful here to others. If not, it’s at least quite a cathartic process simply for me to write all this down!

Please feel free to leave comments – I’d love to hear about your own experiences and perspectives.

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All the posts in this series can be accessed below:

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Introduction to the blog

Autstanding

Welcome to the Autstanding blog, the place where understanding autism and autism understanding come together

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After first coming across the concept of autism just a couple of years ago and then receiving a diagnosis in July 2016, I’ve become pretty obsessed with trying to understand everything I possibly can about autism, both in terms of how it relates to me specifically, as well as in a much more general sense.

Society has learnt a lot about autism over the past few decades, but there is still so, so much we still don’t know. This includes some rather basic questions such as: How can we best help autistic people? What causes autism? What actually is autism? And even (very controversially perhaps) questions around whether autism actually exists (as a biomedical category outside of a socio-cultural construct) at all!

Personally, I feel driven to understand autism largely out of pure curiosity – learning how and why certain brains work differently and the implications this can have fascinates me. But, of course, there are often strong political impetuses behind efforts to increase basic understanding, and these can differ wildly (i.e. pro “cure” advocates vs. neurodiversity advocates). Unfortunately, in many contexts, current attitudes and realities surrounding autism are often quite negative. But, hopefully, working towards increasing understanding – if harnessed in the right way for the right ends – can go a long way towards bolstering the levels of awareness, acceptance and appreciation autistic people experience in society.

In short, this blog seeks to merge two aims: 1) Curiosity-driven discussions about autism rooted in a) scientific theories and research and b) the lived experiences of actually autistic people, and 2) More political aspirations geared towards changing attitudes surrounding autism for the better, with the hope that this will greatly help improve the lives of autistic people everywhere. (Not at all overambitious then!)

 

What’s with the name?

“Autstanding” is a merging of autism + understanding. These two terms can be combined in both directions:

– Understanding autism – addressing basic, yet still largely unanswered (perhaps unanswerable) questions, such as: What is autism? Why is it here? How does it manifest in different ways among different people in different environments and at different times? What does it mean – for the person, for those around them, for society? What can we do to help? And so on…

– Autism understanding – understanding that autistic people a) exist(!), b) should have the same rights as everyone else, c) should be valued for their difference, all in a bid to improve the lives and status of autistic people in society, for the ultimate benefit of all.

Efforts are being made to bolster autism awareness and acceptance (and there’s even a burgeoning autism appreciation movement), but how do we achieve these admiral goals? I’d argue that the number one way is through improving understanding. You don’t necessarily have to understand to be aware of, accepting or even appreciative towards autistic people, but it certainly helps. Though it may seem deceptively simple, understanding is quite a powerful concept. If you do it properly, with real commitment to finding out what things are like from another person’s perspective, I’d argue it’s almost impossible not to lead to positive things.

You probably haven’t failed to notice that Autstanding looks and sounds a lot like the word “outstanding”. This is coincidental, but a happy one I feel, because of some of the following potential implied meanings…

Most obviously, it might suggest that autistic people should be thought of as outstanding in the sense of being above and beyond non-autistic people in a positive sense. This makes me feel slightly uncomfortable (autistic pride gone too far), but still, it’s so far removed from most people’s conception of autism, perhaps it’s useful to be slightly disrupting in this way. Another (and I think more useful) perspective is to take a more literal meaning of “outstanding” in terms of “standing out”, which autistic people often do, whether they intend to or not. Many autistic people can’t help but stand out, and this shouldn’t be seen as a bad thing, in an ideal world it would be encouraged. We’d certainly benefit from more autistic people standing up/out to get their voices heard. Additionally, “outstanding” can be thought of in terms of an unresolved issue still requiring a lot of work, which certainly applies to autism at this current point in time. Finally, as “aut” comes from the Greek meaning “self”, Autstanding could be read as “self-understanding”, which is surely a valuable thing for autistic people to achieve (and all people in general of course).

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UPDATE: I’ve since re-named the blog to Making Sense of Autism. You can refer to my more recent post for more on this change.

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