Ever since I became aware of autism politics, I have been bombarded with the slogan that autism is not disability, it is difference; that disability is (primarily) a social construct, and that autism wouldn’t be considered or treated like a disability if we were just thought of it more like a difference instead. That there is nothing “wrong” with autism per se, it’s simply a different way of being.
The claim that autism is best thought of as difference, has to have this sort of strong meaning behind it to be meaningful at all. If all people meant was that we should call autism difference because autistic people are in some senses different, then the statement is trite and not in any way combating existing paradigms or attitudes (of course autism is a “difference,” no one would deny such a claim). No, for the statement to have any power or purpose, it has to be juxtaposed with the notion that there is otherwise something essentially negative or intrinsically disabling about autism; that it is a difference instead of being seen as *insert current attitude that you want to challenge and change* (ie, disability).
As someone who loves an autistic person (someone who is my very own flesh and blood), I am sympathetic to the aim of making autism appear more friendly, familiar, less frightening or alarming. I want people to see my son as just another fascinating and fantastic individual. But I do not like the rhetoric of simply recasting autism as a difference in the way I keep encountering that claim. The same part of me that wants my son to be accepted (the parenting part), also needs people to continue to think of it as a disability and not more-so a difference, and I feel that I need to say why, because I don’t think the reasons are well understood or often thought about by those who want the rhetoric to change. All the reasons I am going to go through come from the experience of parenting an autistic child (or, if you prefer, from parenting my autistic child, I do not presume to speak for any other parent).
I’m only going to go through three reasons for why I feel uncomfortable and dissatisfied with the “difference” rhetoric, the reasons that I think go underappreciated the most. There are plenty of other reasons that most people will already be familiar with and hardly need recapping (such as the harsh reality of the worst autism has to offer).
Reason number one: Autism is real. As a parent with an autistic child, I could not possibly enumerate the number the times I have had to confront and argue against the notion that autism is not a real condition. The arguments take these common forms: autism is simply an excuse for rudeness; or a made-up condition for overly paranoid and anxious parents; or a parent’s excuse for a badly behaved undisciplined child; or a parent’s way to throw people off the fact that their child’s problems are a pure product of abuse. So here’s the thing then: If you tell the already-doubting public that autism is just “difference,” you play into existing perceptions that it’s not a real or a serious condition; you reinforce for these people the idea that there is nothing unusual or particular about autism, it’s just the normal and predictable outcome of bad parenting, parental abuse, or a rude person’s decision to act like that (etc).
Oh sure, if you had a spare ten minutes of their uninterrupted attention, you might be able to make yourself better understood about how you do think it’s real, it’s just not as “bad” as people think it is. But the fact is the message is predominantly thrown around like a happy-clappy slogan, and to people who already think the worst of what autism “really” is, you’re not helping them to confront their ignorance or prejudices, you are more likely to be reinforcing them.
Reason one doesn’t matter to you, because you think the message won’t be misinterpreted or you for some reason don’t think that part of the public is worth targeting with the message of difference, OK. How about reason two then, which is closely related to reason one: The people who do think autism is a real condition, but only when it is severe enough to be obvious to anyone who meets the child for even ten minutes, and believe the rest of the growing number of autistics is mass misdiagnosis serving the desires of parents who want to jump on the trendy autism diagnosis wagon.
I wish these people were the joke they sound like, but they’re not. Their numbers are even higher than those who think autism isn’t a real condition at all (and those numbers are frightening enough). These are the people who conspiratorially whisper to me how clearly my own son has autism, but so many of the children they meet with the diagnosis don’t have it. Some of them don’t bother whispering; they shout it in blog form or vomit it all over any half-related comment discussion. Just a few days ago I read a blog post by parents lamenting the fact that so many parents these days seek out an autism diagnosis just because their child is different. That’s right, because their child is different, as in, talks a bit slower than other kids, is a bit eccentric, or plays with toys in an unusal manner. The particular blog post I’m referring to – which was not a stand-alone view by any means – proudly and loudly voiced the view that parents should just be more accepting of the differences among children, instead of rushing to label them with “autism.”
Let’s ignore the ignorance here; let’s ignore how hard it is to get an autism diagnosis, let’s ignore the strongly evidenced under-diagnosis going on, and let’s ignore the number of parents who refuse to seek or get a diagnosis confirmed even when those in the know plead with them to do it for the child’s own good. Let’s ignore all that, because my point is this: When you tell these people that hey they’re right, autism really is just difference, they too are reinforced in their hurtful views that parents of (comparatively mild) autistic kids just need to be more accepting of their children and stop labeling them with the latest trendy DSM output.
My mistake, you didn’t mean for those people to receive and misunderstand the “autism is difference” message either. Of course you didn’t. So let’s ignore them too, and go to reason number three.
Number three is services. As parents of autistic kids, we spend ridiculous sums of money and time pursuing a small pool of government funds and specialists, so our children have the best shot at an independent future. We fight to access what is supposedly ours by right. But accessing this pool of funds requires our children’s challenges to be seen as something negative and serious. If it’s just “difference,” then why bother pumping limited resources into helping them to “change;” parents should just accept their child, right? These children don’t need speech therapists, occupational therapists, physiotherapists, they just need acceptance and love. Hey, I was all accepting and loving of my non-toilet-trained, violent, self-harming young son, guess what, it didn’t improve his life. My acceptance and love of him was a constant, but what made the difference was all the therapists we were only able to access because his problems were seen as serious and negative. The very fact that I can sit around and read and debate about attitudes towards autism, is because my son “got better,” his autistic symptoms got so much better through therapies and interventions that I have the luxury to now wax lyrical about how it’s really just difference…
And there’s the rub. Because you know I do believe autism is best thought of as difference. I want the world and my friends and family to understand that my son is just another human being who operates a bit differently in the world than they are used to. But as long as I keep coming against so many people who (1) think autism is a fake condition, (2) that parents who get an autism diagnosis for non-severe kids are just non-accepting of their children, and (3) that autistic children (and adults) need a change in attitude rather than professional help to make their own lives easier (and believe me far too many people in government ministries that control these sorts of resources do not understand the condition or its challenges), then I’m not going to go around shouting slogans about how autism is just difference. (Um, except that time I did it on Facebook on Autism Awareness Day, but even I make errors of judgment sometimes, I know, shocker.)
Those who have damaging, dangerous and hateful views of autistics, worry me a heck of a lot more, than gently shaping the minds and attitudes of those who already understand the intricacies of the autism debates. In this messy political autism world of ours we can debate terminology and argue about “privilege” and whether to use the phrase “special needs,” and “normal,” and “inspiration porn,” and whether the kid hitting his head into the concrete ground “is autistic” or “has autism.” The facts are my son has a disability called autism, he is not “just different,” he is the most amazing person I have ever had the pleasure of knowing (he would shock you with his brilliance and insights, this kid is incredible), but he has a disability, a real good-to-god disability, and if that statement offends or upsets you, you should check your own attitudes towards the disabled, because in my books disability doesn’t make him any less of a human being. It’s fact, not a judgment; check your own prejudices before you tell me that you don’t like my words.
My point? I don’t like the “autism is just difference” message, and I want to help people understand why. Keep using it if you like, but understand why I and others might not jump on that band-wagon, and try to think about our reasons for not doing so before you attack us for being closed-minded. If I have failed to help you to understand such reasons, at least I did it in spectacular fashion 🙂
The post is finished, you can stop reading now, unless you wish to comment. Here’s the thing dear readers, recently I have had four autism blogging friends tell me or the world that they are afraid to speak their minds because autism politics have become so hateful and personal. The point and value of dialogue and reaching mutual understanding has been sacrificed to a loud obnoxious vitriolic personal bashing of anyone who dares to use the wrong words or to speak what they have experienced (their truths).
I too have been censoring myself, because to speak honestly these days is to offer your sanity and spare hours to strangers who would sooner launch personal attacks than deal with the arguments at hand.
So know this; my blog is not your platform to attack your mythical category of “neurotypical” parents (I am nowhere near “neurotypical” mind you, but that will be a blog post in the near future). And if you cannot understand what I have said, you do not have license to pretend I said something completely different and then attack me for that. To save me from such time-sucking counter-ramblings, only moderated comments will be let through on this post. That means you get to disagree with me, if you do it politely and on topic. If you can’t manage that, this is not the blog for you, go hate me elsewhere.