A neurological condition that can render standard forms of communication like tone of voice, facial expression and even spoken language unnatural and difficult to master, autism has traditionally been seen as a shell from which a normal child might one day emerge. But some advocates contend that autism is an integral part of their identities, much more like a skin than a shell, and not one they care to shed.
The effort to cure autism, they say, is not like curing cancer, but like the efforts of a previous age to cure left-handedness...
On e-mail lists frequented by autistics, some parents are derided as "curebies" and portrayed as slaves to conformity, so anxious for their children to appear normal that they cannot respect their way of communicating.
I note that the cost of treating autism is high, and that ought to create a lot of momentum for people who argue that treatment is not desirable. But there is a big difference in interest between "high-functioning" autistics and other autistics. If the high-functioning autistics win support for the idea that they should be appreciated for their distinctive differences and that treatment is oppressive and abusive, won't that tend to undermine the availability of treatment for those who are not high-functioning? You can see why those who care about non-high-functioning autistics are afraid of the acceptance movement.
Reading to the end of the article after drafting that last paragraph, I realize that, although I tried to present both sides of the extremely complex problem, I leaned towared the liberationists by writing "autistics" and not "persons with autism." Those who want the condition treated see it as separate from the person, something they hope to remove. Those who do not say things like "describe me as 'an autistic' or 'an autistic person,' versus the 'person with...' ... Just like you would feel odd if people said you were a 'person with femaleness.' "
UPDATE: An emailer provides some very helpful insight:
Thanks for pointing out the article. Unfortunately I am rather familiar with Asperger's, as three of my children have it.
I think they are using misleading language when they speak of disease and cure. Aspergers people are essentially emotion-blind. This makes interacting with others fraught with misunderstandings, and is a substantial handicap in dealing with other people. Imagine trying to get the day's work directives from your boss when the small-talk and the assignment seem of equal importance. As far as I know there is no "cure" to give them the neurotypical understanding of body language or voice tone. But we've found that the didactic approach seems to help them figure out "what to do next."
Teaching a child protocols sometimes helps: if the other person does X, you can say Y or Z. Some people have had success teaching children how to recognize facial expressions. I'm trying to drum up interest in experimenting with using acting coaches to teach about body language.
None of these are "cures" and none deal with the various quirks that come with the Aspergers package. Quirks don't matter so much, provided you can communicate without misunderstanding. We can easily make a place in our lives for someone with an intense fascination with doorknobs; which I suppose is what they mean by acceptance. But I very much want my own children to be able to figure out when you can joke with a policeman and when you cannot.
Unfortunately the intensive training you need is exceedingly expensive, and some things work with one kid and not with another.
ANOTHER UPDATE: The day after running the above-linked article, the NYT runs a long article about the difficulties of getting insurance companies to pay for the very expensive treatment:
Insurers have long raised objections about the very nature of autism treatment. Edward Jones, a senior official of PacifiCare Behavioral Health and chairman of the American Managed Behavioral Health Association, an insurance industry group, asked, "Is this really an educational service or a therapeutic service?"
A diagnosis for autism is included in the Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association. Treatment of some kind for most disorders in the manual is covered by health plans.
According to Mr. Jones, though, "most people feel it is a biological, neurological disorder, but that cannot be proven." He added that "we don't seem to have any biological treatment for autism."
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