Wednesday, November 19, 2014

Definitions of Autism and Jerry Seinfeld

On CNN - in "London McCabe's Death Matters" - I argued that the way we talk about autism, our ideas about the condition, our ideas about disability more generally, shape the worldview that can lead to child murder. The correlation in these cases is not lack of services or money, but ideas about disability. Correlation is not causality and any individual case may have all kinds of factors, including serious mental conditions, but the correlation is there. And so I argue we need to write victim-centered narratives.

In this blog post, I want to think about how hardship narratives in the autistic parenting community perpetrate what I think are dangerous ideas about autism because they demand that autism = struggle. To do that, I'm going to look at responses to Jerry Seinfeld's interview in which he came out as possibly on the autistic spectrum.

Response to Seinfeld was varied. From the welcomes (but stop supporting Autism Speaks) to get out! It's these latter that interest me.

First - Here's a discussion about the removal of Aspergers Syndrome as a separate diagnosis, instead redefining Autism as a broad disorder with an expanded spectrum. That's really the subtext for a lot of these pieces.

The general dynamic is that autistic people are welcoming Seinfeld, while parents who are struggling mightily (and I do not deny the veracity of those struggles) want to exclude not only Seinfeld, but by extension anyone with autism who is doing pretty well.

Here's an example from "Age of Autism," an anti-vaccination group linked directly to the kind of "cure-based" discourse I talked about in my CNN piece. The author, a struggling parent, writes: "Screw You Jerry Seinfeld." The complaint is that because Seinfeld is so rich and successful, his embrace of the autism label somehow diminishes the struggles that the author is having.
And you can watch Jerry struggle with basic social engagement and making friends on his new show where he socially engages his many friends, who happen to be the most famous, popular and clever people in the world, on his new show, “I Can't Look You In The Eye or Answer Wh Questions Without Prompting.” No... that's not it. It's called “Comedians in Cars Getting Coffee.” A follow-up to the most famous comedy show of the late 20th century in which Jerry spent many years making witty banter that was frequently entered into the English lexicon. Not that there's anything wrong with that.
That reminds me... do you remember that hilarious episode where Jerry walked around his apartment on his tiptoes while flapping, wiped his poop on the wall, got lost for three days in Manhattan, was tortured by bullies and then had a seizure? Me neither.
Because again, Jerry apparently has the kind of autism that is not dysfunctional, even though autism by definition is dysfunctional. He has a non-impairing impairment. Because autism, it’s just a different way of being– even though, again, by definition, being listed in the Diagnostic and Statistical Manual of Mental DISORDERS means that it is a disorder... which means that it is disordering, dysfunctional and impairing.
 In the Down syndrome community, which is of course chromosomally based in terms of diagnosis so there's less wiggle room, there's a general tendency to cheer success. My child can do many things, but I know many people with Down syndrome with MUCH better speech and hence greater degrees of integration. I would never want to exclude such people from my son's community. But here, from Age of Autism, we have a voice trying to separate the successful from the struggling.

And it's not just the crank groups like Age of Autism. In Salon, Columbia University creative-writing professor Marie Myung-Ok Lee wrote essentially the same piece, only with clearer prose and less ranting.
Seinfeld said he hopes his announcement will help diminish the stigma of autism, an unequivocally laudable intention. Retroactively self-diagnosed adults or high-functioning autistics like Temple Grandin indeed may be living proof that one can overcome huge obstacles and live with and even flourish despite autism. Every day, dead people, too — Mozart, Newton, Einstein — are also retroactively diagnosed with autism.
What I fear is that these public faces of autism will allow society, and more important, policymakers, mentally off the hook. You can have autism and get a Ph.D.! It helps you write jokes! Your charming quirks and aggravating behaviors are now explainable. 
To veer to the other end of the spectrum, the sporadic — but steady — news of overwhelmed parents killing their own children warns of a crisis building in our own homes. Many of these cases have been mothers, but before we explain it away, as it has been, with gendered suggestions of mental illness, attention seeking, etc., let’s also remember this story about a father — and high-ranking former Bush official — who shot his autistic 12-year-old son in a murder-suicide inside their suburban McLean home.
Three problems.

First, again, the discourse of overwhelmed parented in these murder cases is not the dominate correlation. The dominant correlation relates to ideology about the fundamental nature of disability.

Second, Lee doesn't dig into the evidence behind the "news of overwhelmed parents," but just assumes that this discourse is accurate. It isn't.

Third, although I believe that Lee and the others genuinely fear that, somehow, a highly successful person with a disability might somehow erode support for those whose delays and difficulties are more acute. They aren't just making up the fear. They feel it. But why? No one cites any examples or evidence for how a successful person with autism might erode support for those for whom the challenges are more acute. As near as I can tell, it's just a gut feeling. I think it's mistaken.

The author suggests:
Being a parent of a child with severe autism in no way diminishes my respect and admiration for Jerry Seinfeld and others striving for autism acceptance. What I am proposing is separating the high-functioning end of the spectrum — perhaps calling it something else — so that we can focus on the urgent and looming issue at hand.
We had that. It was called Asperger's Syndrome. The Aspie diagnosis was a point of identity for some inside the community, but it was deemed non-scientifically accurate because there was no clear line between Aspie and Autism. Rather, there's a very large spectrum. That's our best understanding of what the condition actually is. How it makes us feel shouldn't override the science.

And here's the part where my critique of Lee gets personal. She's at one of the great universities of the world. She has a book coming out on the future of medicine from Simon & Schuster. And she concludes:
It’s only a matter of time before another child is killed, and we won’t even remember their names. We need to call autism what it is: a public health emergency, no less deadly and devastating than Ebola.
She's right that it's only another time before another child is killed. It's not, though, a public health emergency. It's a discourse and representation emergency. It's a political emergency. It's a language emergency.

I see Seinfeld's coming out as a positive, helping to shift the conversation, at least potentially. I see this Salon piece as very troubling, feeding into a kind of othering that isn't helpful and might, in fact, correlate strongly with those who do the worst things imaginable to their children.