Saturday, August 11, 2007

The Relative Invisibility of Autistic Adults

This is something of a political rant.

I found myself wondering why there seems to be much less visibility in the general culture and in official, offline-based resources for autistic-spectrum people for issues related to autistic adults and their relationships than there is for issues related to autistic children and their parents.

You hear all the time about the statistics of 1 in 150 kids being diagnosed with autism, speculation on what causes so many kids to have autism, therapies for kids with autism, and resources for parents of kids with autism. My boyfriend gets a periodical flyer/newsletter from an AS advocacy group, and most of the articles in it are geared toward children and teenagers. Most of the offline groups listed on itswebsite are geared toward children and teenagers and their parents.

I remember going with my boyfriend to a class on adolescent and adult autism-spectrum conditions for therapists and social workers looking to work with autistic-spectrum people. He was serving on a panel in that class. After the panel, the panelists were allowed to interact with people in the class, and I followed my boyfriend along to some of those small discussion groups so they could talk to both of us about the relationship. Some of the people asked us where they could find more information about adult autism, and we directed them to the online forums we knew of.

Why the invisibility of the autistic adults? Why do you have to go to somewhat obscure corners of the web that few non-autistics would hear about or seek out?

I wonder if it's because all these people who sell or buy into the popular model of autism as a disease are hoping to convince themselves and the world that, if you choose the right therapies, your kid will either grow up not to have autism anymore, or not have to rely on strategies to accommodate their autism in their adult relationships. That isn't so, for better or for worse. Quite likely for the better, IMO, because I find that trying to maintain an intimate relationship with an Aspie and understand the issues of adult autism in general has been encouraging me to question things I take for granted, and to become more compassionate, even towards myself. If it is not fair to judge autistic people as being less valuable because of the things they find difficult, how is it fair for me to judge myself as lacking value because I'm "too normal" and thus "not special?"

Some quacks and so on would want to perpetuate the notion that autism rates are indeed exploding rapidly for reasons other than the recent recognition of the broader spectrum - which would require there being many fewer autistic adults than autistic kids - so as to get people to buy into the reasoning behind their "cures," which is that some avoidable or reversible external agent such as mercury in vaccines, pollution, or allergies to increasingly genetically and chemically altered foods is causing all or almsot all autism, and therefore avoiding these agents with their special diets and treatments will cure it.

But perhaps the reasons behind the invisibility are not so dire. Perhaps it's simply a matter of autism being easier to recognize in children than in adults, since autistic adults have often taught themselves coping mechanisms or learned to communicate effectively. Or maybe it's a simple matter of people naturally wanting to invest in the children, who are the nation's future, in genral.

The idealist in me wants to see more people questioning their assumptions and treating and valuing all people as equals, regardless of their neurology. And I think greater visibility of adult autism, in theory, could help with that: it will alert us to the fact that not everyone around us thinks and feels the way we do, and some of the people we encounter in our daily lives could feel and think in ways we usually don't imagine. But the cynic in me says that as long as people don't see easy money or other shortcuts to satisfaction via learning to consider that the people in our daily lives might think and feel in ways we do not expect (and that those differences might be useful), adult autism will stay under the popular radar. Or if it does become more visible, it will be the same miracle cure quick buck angle that we see with childhood autism.

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