By Lance McLemore, PRC-Saltillo Blogger
It seems that autism awareness month is upon us again. I guess I’m being my usual sour contrarian self, because I can’t help but feel a little skeptical and cynical about the whole thing. It seems like a month-long high school pep rally, but I wonder, what exactly gets accomplished? What exactly are people becoming aware of? Have the lives of autistic people improved over the last few decades?
I suppose part of the reason why I’m cynical is that I grew up in a time where not much was known about autism, and that’s only fairly recently begun to change. For a long time, the only exposure that the general population had to autism was the movie Rainman. That movie has not done the autistic population any favors. It paints an absurd caricature of autism that many of us find unhelpful at best and harmful at worst. I have spent most of my life feeling disconnected and misunderstood, so perhaps I’m a little guarded.
The biggest problem I have with autism awareness month is that I’m not convinced that it improves the lives of autistic people in any appreciable way. People wear the puzzle piece, light it up blue, give money to organizations that do very little to actually improve the lives of autistic people, put a bumper sticker on their car, etc. They pat themselves on the back for a job well done, and then the status quo resumes. I certainly don’t think this is the case for everyone. I know there are many people who have a genuine interest in improving the lives of autistic people. However, there are also many who just want to virtue signal. They need to feel like they are fighting for a good cause so they can score a few social brownie points. I get the feeling that most social movements are like that. There is some disadvantaged group of people, another group jumps in to “save” them, but it’s mostly for their own self-aggrandizement.
At this point, almost everyone is aware of autism to some degree or another. Awareness is a means to an end, and not an end unto itself. Most other people don’t seem to have any idea what should come after awareness. Progress seems to have stalled. Awareness is a necessary step, but awareness per se is not enough. Awareness of the 80% unemployment rate for autistic adults doesn’t do anything to help the situation. Awareness that a third of non-speaking autistic children graduate high school without a way to communicate doesn’t help anything. I could go on and on talking about a myriad of problems autistic people have to deal with. Now you’re aware of these and many other harsh realities, so what are you going to do about it?
Many autistic self-advocates see awareness as a prelude to acceptance, or rather that’s the ideal. I can be aware that the joists under my floor are rotting, but if I don’t act on that awareness, then the floor will cave in. Very often the goal of any intervention involving us is to make us resemble a “normal” person as much as possible. The degree to which we can be socially acceptable is the degree to which we are considered successful human beings. In the autism community this is called masking. Of course, we will never be “normal.” The best some of us can do is force ourselves to appear normal until we eventually have a mental breakdown; a persona takes a tremendous amount of energy to maintain. A lot of people pay lip service to diversity, but I’m convinced that there are very few people who actually want it. People are most comfortable around other people who are like themselves, and autistic people seem like another species. I don’t know if this has improved or if it can improve. I do know that acceptance of autism is necessary before any of our problems can be addressed. Accept autism, and then figure out ways that it can be accommodated. I look forward to the day when our needs are not seen as “special.”
Let me give an example to illustrate my point. As I mentioned earlier, the unemployment rate for autistic people is estimated to be about 80%. Being aware of this is all well and good, but it’s not enough; action must be taken. For example, employers could change the way they interview candidates. Interviewers could stop using social skills as a way to determine a candidate’s general competence. They could find ways for autistic people to show what they know rather than tell them. It seems that interviewers are more concerned about whether the candidate is likable than whether they can do the job. If two people apply for a job—one is autistic, well qualified but socially awkward, and the other is not autistic, less qualified, but more likable—in most cases the second person will get the job. It’s like the popular kids in high school deciding whether they want you in their clique. Autistic people are not going to put on a good social performance, and interviewers need to understand that. They need to find better ways of judging our suitability for the job. Better accommodations need to be available on the job: clear written instructions, email rather than phone calls and face-to-face conversation whenever possible, dimmer lighting, mentoring, and whatever else the autistic individual needs. And don’t force us to fight you to get accommodations. Things like this will actually make our lives better.
I don’t have all the answers, but I do know awareness is just the starting point. Don’t use autistic people as some social prop to score brownie points. If you actually care about our well-being, then do something to help bring about tangible improvements in our lives. It doesn’t have to be anything big. Remember that positive action must come from a place of acceptance; trying to make us more like you does not solve any problem, and it probably adds to it. Our unique way of looking at the world can be a tremendous asset if it’s recognized, nurtured, and harnessed.
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Communicators In Action - aac, language, autism, communication, disability