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!
beacons of electricity
light electric fright
clap flap clap?
unusual as a horse using a telephone
catography of cataloguing cats
glows, purple sparks
finesse, drum beat drumbs
Talk thought, thought talk, aut talk
Eyes, glances, flashes, glasses
of energy, feels right
that spinner, spin that autism treatment wheel
be gone, boxes be gone
rollicking and autistic zebra fish?
badge, green badge, drop badge, no badge
stim stimmm, mmmmm
‘phones, plugs, ‘phones
Following me, following you
place. Blue line?
I want to connect?
time time timetable
out, space out
pain, head full
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.