…according to the somewhat optimistic promise on the button that you may have noticed on the left of my blog, I am now supposedly blogging for autism awareness.
You may also have noticed that I don’t, so far, appear to have been living up to this promise. This is not for lack of trying, but, as usual, for lack of spare time – I have spent the month so far trying to work on this post while feeling that blogging for autism awareness is something I might be able to see my way clear to finding a few minutes to do some time around, oh, say, September. Of 2009. Possibly. But there is currently at least some of April left, so here is my first stab at a Blogging For Autism Awareness post.
If someone with a handy crystal ball had told me, a few months back, that I would be Blogging For Autism Awareness This April, I would probably have been fairly surprised. I do not mean that in the "I never expected to find myself dealing with the world of autism" sense (that, I’d completely expected) – I mean that I would have been surprised at the idea that I’d think blogging for awareness was something to which I could productively contribute. People already are aware of autism – everybody’s heard of it, haven’t they? I wouldn’t have had any particular inspiration as to what I should say to increase this awareness. "Hey, everyone! Did you know that some people are autistic?" doesn’t really seem like a promising beginning to pad out to blog-post length.
After all, everybody knows the important stuff about autism. Right? We’ve all read the newspaper articles and the magazine stories and the heart-wrenching True Life stuff about Our Autism Nightmare or My Child’s Terrible Affliction. So we all know about autism. Don’t we? Helpless, hopeless, a life-destroying disaster that renders a child incapable of enjoying life or doing any of the things normal people do, unaware of what’s going on around him, and, barring miracles, devoid of hope for any sort of future.
In other words, the general public thinks about autism in pretty much the same way as it used to think about physical disability. A few decades ago, that last sentence would have exactly described the kinds of attitudes a child in a wheelchair would have to face. People talked about them as though they weren’t there, assumed they were incapable of learning, working, or contributing usefully to society, and wrung their hands over the tragedy of it all. Disabled people tried to point out that they’d actually vastly prefer it if everybody else shut up with the pity and the stupid assumptions and got on with something useful, like building ramps, but unfortunately nobody really seemed to want to listen. Which, of course, is still the case to a depressing degree. But, in general, society’s attitude towards the physically disabled has improved a hell of a lot over the last several decades. There’s still a long, long way to go. But if you heard someone today describing children in wheelchairs by gushing about what a tragedy it was, how awful it must be for them to have such hopeless lives, and how awful it must be for their families to have to bear such a burden, then you’d probably recognise that they were being both ignorant and offensive.
When it comes to the autistic, however, we think absolutely nothing of talking that way about them. It’s standard phraseology for any story about autism. How often does it ever occur to any of us that we might be just as wrong – and causing just as much offense – as we would be if we talked about other forms of disability in that way?
Over the past few months, I’ve been reading a lot about autism, browsing through weblinks. At first I was just trying to brush up on my knowledge of diagnosis and current treatment approaches, and the stuff I found when I Googled was pretty standard stuff along those lines – DSM criteria, early signs to look for, applied behavioural analysis therapy, biomeds, yadda yadda yadda. And then, gradually, I found more and more links to webpages and essays that challenged a lot of the traditional views about autism and its treatment. Quite a bit of the stuff I was reading was from autistic people themselves – the very people that we’ve always thought to be incapable of communicating. They’re voicing their opinions, loud and clear, on just what they think of society’s attitudes. It makes fascinating, thought-provoking, challenging, uncomfortable reading. Turns out we’ve assumed a whole lot of stuff about autistic people that’s wrong.
We’ve assumed that, because autistic people have a hard time speaking and often can’t learn to speak at all, that this must mean that they can’t communicate. In fact, lots of them can learn how to communicate fluently in other ways – just as a deaf or paralysed person might find it easier to use communication tools other than speech, so can autistic people. Many can type far more articulately than they can talk. Others might benefit from using picture card systems.
We’ve assumed that, because autistic people don’t seem to react to their surroundings, this must mean that they’re not aware of them. In fact, it seems the lack of reaction is more likely to be due to lack of processing/reacting skills than to lack of awareness – just as a totally paralysed person can hear everything you say despite not being able to respond to it, so too can even a severely autistic person. (And… you know all those times people talk about what an awful burden it is to have an autistic child or how autism is some kind of terrible living death? Yup. If you’re talking that way in front of an autistic person, or writing that stuff in a newspaper that they can read, or putting it on a television programme where they can see it, then that person is probably listening and understanding. And is probably just as hurt and offended by having their life described in such a way as a non-autistic person would be.)
We’ve assumed that, because a life looks different from ours, it must not be worth living. We’ve assumed that autism is a terrible affliction and that the only hope for people thus afflicted is for us to come up with A Cure, something that will get rid of that awful autism and let the person be just like everybody else. In fact, it seems that most autistic people don’t want that at all. What they want is to have practical help with dealing with the ways their disability impacts on their lives, help that starts from the point of what they actually need rather than from an assumption that the most important thing is for them to look as normal as possible. To be allowed to be different, as long as those differences do not harm others. To have their opinions listened to.
As I read more and more on those subjects, I was amazed and excited and saddened. Amazed by how little I’d really known about autism, after a lifetime of interest in the subject. Excited by all that I was learning. And saddened that these issues aren’t far more widely known about. The growing popularity of computers and the Internet mean that autistic people have more chance than ever before to let people know how they really feel about the way that autism is portrayed in society and about the treatment (in both senses of the word) that autistic people get. But very few people know that these things are even issues. In fact, the impression I’ve been getting is that a lot of people aren’t even interested in hearing more when autistic people try to tell them. People don’t want to listen. But we need to. Otherwise, autistics will continue to be short-changed.
So that’s why I’m blogging for autism awareness this April.