Kathryn Cramer points to a fascinating article in the NY Times about Austistic advocacy groups fighting against attempts to cure Autism. Certainly reminds me of the point I made just the other day about ADHD having both drawbacks and advantages.
Tuesday, December 21, 2004
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4 comments:
It was a very funny article, and one that I got quite a few copies of and references to, by email.
And I think it totally missed the point of all the attempts to "cure" autism. In fact, it's fair to say that NOBODY tries to cure autism. What people try to do is mediate between the desires and fascinations of the autistic individual and the requirements of people around them.
An example: hyperfocus is fine and dandy, but if the individual is so hyperfocused that they soil themselves because they forget their bodies while playing chess, they should know how to clean themselves up. Right?
Sometimes, it's even a good idea to learn the skills of actually figuring out before the soiling occurs. This may detract from the hyperfocus but it is a Very Good Thing for many reasons, including future permission to play chess in the club and danger of e-coli-type disease transmission.
The strengths of ADHD can have similar chaotic effects on the lives of people around them. Getting into agreements with others (I loved Tammy's post about that on her Notes.Co.Il blog) is a constructive way of dealing with it. But contrast that to the fact that individuals with autism have the additional difficulty that they often do not really comprehend that others can have needs that get trampled on.
I think that the mutual livability of the autistic individual and their family or other caretakers is the essential goal of most treatment. I'm not talking "get into Princeton" or "become a lawyer/doctor/engineer" here - it's expectations like "don't pee on the toilet seat" and "let other people talk during mealtimes, even if the subject is not one of your fascinations" that individuals on autism spectrum tend to need help with, if they are ever to fit into a productive lifestyle.
I do not wish that my son did not have autism - I wouldn't exchange his beautiful mind for all the gold in the world. But I will work tirelessly to help him get along in the irritating real world, even though this means I'll be intruding on his focus (and even though I acknowledge that his fascinations/obsessions are of primary importance to him, and may be crucial to our world - as many scientists' obsessions turned out to be). And that intrusion is uncomfortable, and he may (and does!) protest.
That said, I'm all for neurodiversity, as long as mutual respect should go with it, as soon as the individuals concerned are capable of understanding the word "mutual".
There was another NYT article on autism very recently, this one focused on early detection and intervention: http://www.nytimes.com/2004/12/14/health/14auti.html?ex=1104209875&ei=1&en=a0547ea5b5942396
Unlike Shunra, I was not amused. The story of what happened in Canada positively horrified me. I'm all for autistic individuals finding strength in their autism. That doesn't mean that everything about autism is a strength, nor that any attempt to change the course of autism is an abuse.
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Shunra wrote, "mutual respect should go with it, as soon as the individuals concerned are capable of understanding the word mutual"
The claim that autistics are incapable of understanding social responsibilities and therefore don't deserve social respect is the same argument used by slaveholders to justify keeping blacks as property.
Human beings are entitled to respectful treatment simply because they are human beings.
I agree with shunra for the most part, and in fact a number of autistics have similar sentiments. For example:
http://www.autistics.org/library/anotherparent.html
But I also agree the anonymous person who objected to the comment about understanding "mutual" although I wouldn't phrase it so strongly. In my opinion, "treatment" for autism should be like teaching a foreigner how to manage in our society. And the adjustment should be mutual. Many people expect that a minority should entirely adjust to a majority. If Deaf people can't communicate with most people, well they should get cochlear implants and/or learn to read lips! In my opinion it would benefit everyone if we instead had most people knowing at least fingerspelling. Maybe it could be taught in schools. That would help some people who learn best by doing things, too. Some people think you install ramps or some other material accomodation and tell people "Be nice" and you'll get integration. You have to work at integration. You have to stop tearjerker infomercials begging for money, you have to dispell stereotypes, and most of all, you have to get people to recognise that not everyone is the same. Plenty of people assume that a tantrumming kid is spoiled, even if they've heard of sensory overload. Plenty of people say things like "everyone is..." "humans are..." and "we all..." about things that AREN'T ture of everyone. For example, "Humans are social creatures." Well at least 1 out of 166 of us aren't. Are they not human?
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