Marie Myung-Ok Lee wrote a very nice piece about the politics of autism in Salon. She’s the parent of a severely autistic child. She says with all the attention paid to higher functioning autistic types, people forget about the families who are struggling with kids with severe needs.
Autism is often described as a spectrum. On one end, there are quirky, brilliant people who hold fabulous jobs and lead successful lives. On the other end, there are people who can’t communicate, who require extensive and expensive services, and who may even be of danger to themselves and others.
I actually think of autism more as a tree. Even those who are higher functioning have very different talents and challenges. But, still, there is no question that some people with autism can successfully navigate the modern world, while others require intensive support for their entire lives.
Lee proposes creating new terminology to separate the extreme ends of the spectrum. She doesn’t want people distracted by the Seinfelds and the Zuckerburgs. In order to really support families like hers, she wants a laser focus on the extreme needs of non-verbal, lower functioning kids. She would like greater awareness of the environmental causes that might be underlying the growth of autism.
I think that’s a mistake. The more people that are in the autistic tent, the more money goes to research and schools. All those cars with puzzle piece bumper stickers benefits kids on both ends of the spectrum. Lower functioning kids and their families need more help. No question about it. I just think that cutting loose half of the autistic population won’t help that cause.
Apt. 11d 
Yes, it’s interesting to see how differently autism is understood today. Did you hear about Jerry Seinfeld saying in a recent interview that he thinks he’s probably on the spectrum? COuldn’t decide what to make of that — if it was a good or bad thing that he was willing to claim the label. I suppose the danger is that people will decide that this is what autism looks like, and if Jerry Seinfeld was able to become successful and self-supporting, then . . .
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I have mixed feelings about one label that is so big, it’s damned near useless, vs. a bunch of narrower labels that describe sub-groups very imperfectly. I’m not sure which one is more useful in getting people affected what they need, whether it’s a residential setting or minor employment support or whatever.
But I agree with the author that finding environmental factors needs to be heavily prioritized.
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A few generations ago, society chose to institutionalize or ignore many people on the spectrum. Now we’re trying other options but they’re still all over the place and more piecemeal than universal. I doubt you really can be all things for all people on the spectrum but it’s a huge amount of hard work to discover and then obtain services for someone, whether yourself or someone under your care. Exhausting, draining, dispiriting work.
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