Normal Is Overrated

For those who hadn’t heard, today was designated the first ever Autism Awareness Day by the United Nations. And I really expected the worst from the media, being the cynical aspie that I am.

And to be fair, there were some bits of coverage that had me screaming at the TV. Like a certain evening talk show which covered the issue of vaccines and autism in what sounded to me more like a shouting match than a rational debate. And for that matter, I’m glad I don’t get the Sundance channel either, because they showed the extended version of a certain autism ‘awareness’ film that I’ve already criticized here in the past.

But yet, despite this, today was surprisingly not a total loss when it came to coverage of autism in the media.

One thing that particularly bothers me about media coverage of autism is that it generally focuses on the most severe cases, and on top of that, generally focuses on children while completely ignoring the experiences of adults with autism. While I don’t deny that there does need to be coverage of autism in children and of the more severe end of the spectrum, the point is, that’s not the full extent of autism. To truly have autism awareness, we must touch on the whole range of autistic experience—and for that matter, we must have at least some awareness of the experiences of autistics themselves, not just the vicarious experience of parents.

Those of us who are on the ‘higher-functioning’ end of the spectrum, in fact, almost have it worse in some respects. Because many of us can maintain an appearance of typicality most of the time, it’s assumed that this façade is a natural one, rather than one which must at times be consciously applied. And even when all effort is being used to keep up this façade, it doesn’t always work quite as planned, and certain gaffes may make it quite apparent that something’s not quite normal. I liken it to running Windows in a virtual machine on my PowerPC Mac; it does run, but it’s much slower than running it on a native processor, it takes up a lot of memory and processing power, and it doesn’t even emulate the entire range of code supported by a native Pentium processor. It’s usable, and it looks OK on the surface, but using it for any extended amount of time makes it pretty clear that this is no Pentium inside this little box.

The Washington Post made a good start by printing the article Autistic and Overlooked, which asked the question of why the media seems to ignore the fact that autistic kids grow up into equally autistic adults. Even then, I felt it didn’t go far enough—among other things, repeating the same old rhetoric of autism being a “devastating disorder”—but at the least, it was a very good start in at least pointing out the lack of attention toward autistic adults.

And then, I discovered, on the web site of the magazine Computerworld, an article also posted today with the title Asperger’s and IT: Dark secret or open secret? This article not only talks about the existence of autistic adults, but specifically discusses those issues that are troublesome for those of us on the higher-functioning end of the spectrum, particularly in the workforce.

This is the sort of autism awareness that doesn’t get enough coverage in the media; this is precisely the sort of thing I’d like to see more of.

And last, but definitely not least, one of us adult autistics deserves special mention for making some significant efforts toward promoting awareness of autistics on this first ever Autism Awareness Day.

Ari Ne’eman of the Autism Self-Advocacy Network (one of the autism organizations for which I’d like to see more media coverage, incidentally) spoke at the inaugural meeting of Florida’s Autism Task Force regarding the needs of autistics; the transcript of this speech can be found here. And as if that’s not enough, Ne’eman was also appointed by Jon Corzine, governor of his home state of New Jersey, to the New Jersey Adults with Autism Task Force.

So yes, I was pleasantly surprised by some of the efforts made in the name of autism awareness today; things did not turn out nearly as discouraging as I’d expected given previous coverage that I’d seen. Here’s to even further progress on the next Autism Awareness Day!