Awareness, understanding, acceptance

Today is the first of April— April Fools’ Day. It’s also the start of Autism Awareness Month. An ironic combination, since I know plenty of autistic people who can’t stand April Fools pranks whatsoever, and since so many on the spectrum have trouble with untruths… but I digress.

Something I’ve noticed, as I keep an eye on Twitter searches and Google Reader, is that what counts for autism awareness is… rather shallow, honestly. One particular ‘awareness’ campaign I’ve seen referenced a lot lately involves putting blue lightbulbs in one’s outside lights, and wearing blue clothing. If I may ask… how does this even indicate that autism exists to someone who doesn’t know about it, much less indicate what autism actually is?

And that’s another thing. Many of these awareness-raising efforts that I’m finding describe more about the campaign itself than about, well, what they’re raising awareness for. At least one site I’ve seen people linking to describes the awareness campaign in great detail on the front page, but hides the actual description of autism several links deep, below the fold.

Surely I can’t be the only one who sees this as a problem?

Honestly, I think we need to move beyond mere awareness. With all the public service announcements and such that I’ve seen, I’d venture to say lots of people are aware that there’s some sort of condition known as autism, that it exists, and that a lot of people have it. But as someone who actually is on the autistic spectrum, I’ve also noticed that this awareness generally doesn’t make people any more clued in about autism.

What we need is understanding of autism—which automatically encompasses awareness as well; if you understand something, after all, you’re surely aware of it.

People don’t get that autism comes in many forms—that, as some people have said, “if you’ve seen one autistic person, you’ve seen one autistic person.” That despite PSAs shining a spotlight on extreme cases, not all cases are of equal severity. That even among cases of equal severity, it may present quite differently from person to person.

People don’t get that autistic kids grow up to be equally autistic adults, because so much of the materials used for awareness exclusively show children, even when they do mention in a side note that autism is a life-long condition.

People don’t get that autism isn’t just about socialization and communication– that it also has sensory aspects, too. That the reason an autistic kid doesn’t listen may be because he or she can’t decipher speech due to garbled sensory input. That the reason an autistic kid doesn’t want to hug or maintain eye contact may be because he or she finds it literally painful.

People don’t get that events, and sometimes even social structures themselves, can be confusing at best and inaccessible at worst to an autistic person—and that it’s not necessarily the autistic person’s fault. People often don’t even imagine that autistic people might want to participate in events and in society, despite plenty of evidence to the contrary—much less consider what might make these things so inaccessible or how to remedy them. Nor do they imagine that autistic people might find ways around these accessibility barriers and be active participants.

And often, people don’t get that other people sometimes just like to be left alone… both autistic and neurotypical. (I could probably go on a whole other rant about introversion and how it’s treated by society as a whole…)

If people understood autism to the same extent that they were aware of it, we might even begin to see more acceptance. That even in the worst times, even when they’re acting out, even when communication is a serious challenge, autistic people are still human—and still deserve to be a part of society, treated with respect, as much as everyone else.

I’ve noticed something related quite often in many discussions of autism that I’ve followed both online and offline: an othering of autistics, an ‘us versus them’ where the ‘us’ is non-autistic and the ‘them’ is autistic. This sort of discussion is almost always uncomfortable for me, because generally—even as a ‘high-functioning’ autistic—I feel far more kinship with the ‘them’ in this equation than with the ‘us.’

And it’s amazing how many prominent figures in the dialogue about autism make these same mistakes, over and over and over again.

Today has been declared Autism Acceptance Day by Paula Durbin-Westby, as a counterpart to the World Autism Awareness Day that is occurring tomorrow. And that is why I’m posting this today: to stress that society as a whole really need to go beyond awareness into understanding and even acceptance of autism.

There is one project I’ve been helping out with that is a wonderful antidote to this lack of understanding and acceptance: The Gateway Project. What they’re trying to do is to help make things more accessible for autistic people—and they’re doing it with active help from people on the spectrum. All of their studies are designed with four values in mind: they are inclusive of autistic people in the planning stages, are written to be respectful of autistics, are designed to be accessible to autistics from the start, and are intended to produce results that are actually relevant to autistic people in day-to-day life. You’re welcome to participate even if you’re not autistic; these studies are partly designed to observe how experiences differ between people on and off the spectrum, so that it becomes apparent what could use improvement in order to produce these relevant results.