Tuesday, May 27, 2008

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New York has a piece on the "neurodiversity" wing of the autism rights movement (analogous to Mad Pride), published hot on the heels of this NYT piece. Matt Zeitlin is ambivalent:
Where the neurodiversity folks get it wrong, I feel, is in their (sometime) categorical objection to seeing any objective component to autism-as-disability. Oftentimes, their tributes to the benefits of autism can fall on the deaf ears of parents who spend massive sums and huge amounts of time just trying to get their kid not to have self-destructive tantrums or potty trained. To those parents, it’s hard to say that their kid is merely approaching cognition in a different way, he’s disabled (if the term is to mean anything at all).

I see no reason why we can’t come to some sort of compromise as outlined by Temple Grandin:
Grandin argues that both the autistic person and society have to make accommodations. “I won’t do all the neurotypicals want, but you have to go halfway,” she says. “We had manners pounded into us. We had fancy dinners at my grandmother’s, and I was expected to sit at Granny’s table for twenty minutes and I couldn’t monopolize the conversation. You can’t degeekify the geeks, but you can be a polite geek. Autism is a continuum from genius to extremely handicapped. If you got rid of all the autism genetics, you’d get rid of scientists, musicians, mathematicians. Some guy with high-functioning Asperger’s developed the first stone spear; it wasn’t developed by the social ones yakking around the campfire. The problem is, you talk to parents with a low-functioning kid, who’ve got a teenager who still goes to the bathroom in his pants and who’s biting himself all the time. This guy destroys the house, and he’s not typing, no matter what keyboards you make available. His life is miserable. It would be nice if you could prevent the most severe forms of nonverbal autism.”"
The problem with Grandin's compromise isn't that she throws too many symptoms of autism on the difference-not-disability side of the spectrum (although I certainly think she's done so), but rather that she looks at someone whose symptoms can't be spun as endearing quirks and concludes that his life must be miserable.

From what I've seen of the disabled community through Martha (old photo of us here; photo credit presumably to our mother?), my guess is that Ari Ne'eman's is the more popular point of view:
As a public-relations point, it’s nice to point to people like Vernon Smith, a guy with Asperger’s who won the Nobel Prize in economics, or Tim Page, who has Asperger’s and won a Pulitzer. But it would be a mistake to say that people carry worth and should have their differences respected only if they can deliver some sort of special talent.
Zeitlin and Grandin both seem to want to limit the range of autistic behavior that we consider truly disabling and I'm on board with them as far as that goes, but it's more important to make sure that no kind of autism, not even the most severe, is considered catastrophic.

How can we tell that someone has crossed the line from "Having a child with autism is a drag" to "Having a child with autism is a disaster?" It isn't always as obvious as whether they say things like "His life is miserable" (although apprently it can be). To take one example, though, parents who spend their autistic son's youth going from one experimental treatment to the next display an unseemly zeal for curing him that necessarily implies not just disappointment but a deep dissatisfaction; they cross a meaningful line.

It's a tough distinction to put your finger on, but if your attitude towards autism sounds like what Jim Sinclair is describing here, you're probably on the wrong side:
In his seminal invective, “Don’t Mourn for Us,” from 1993, [Sinclair] wrote, “It is not possible to separate the autism from the person. Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (non-autistic) child instead.’ Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”
The disability-as-disaster mentality isn't just hurtful to the autistic; it's bad for the rest of us. I don't want to instrumentalize the disabled and say that they're only blessings insofar as they offer the rest of us valuable learning experiences, but it's clear that really internalizing the statement "And the last shall be first" can be quite beautiful, and it can't be done without making your attitude towards disability look less like Zeitlin and Grandin's and more like Ne'eman and Sinclair's.

If a cure for autism fell from the sky tomorrow, I wouldn't have a problem with any parent who wanted to use it. (My take on cochlear implants is different, as is my take on the declining Down Syndrome birthrate, but those are other posts.) It's the frenzied scramble for a cure that I object to, and the subway ad scare tactics.

And, as a last comment on Temple Grandin's compromise: it's a strange set of priorities that leads you to say, "Your inability to form human relationships isn't important to me, but your bad manners are a real problem."

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