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:
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.
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).
That language, and specifically the need to police it, does not really matter.
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):
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…
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.
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.
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.