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Labeling the Elephant

February 15, 2010

Today I stumbled across the New York Time’s Letters to the Editor on the subject of relabeling Asperger’s. Having been a bit out of it over the week, I didn’t know that Asperger’s was facing a possibility of being relabeled. But hey, I also didn’t know that Dick Cheney condoned torture or (still!) who won the Superbowl last weekend! Was it the Yankees? Are they a football team? As you might imagine, I’ve been a bit out of it.

Anyway, the letters on Asperger’s seem to fit in with my running theme of Monday Madness, and so will become the subject of today’s writing — as it’s 6pm already and I’m puttering in the kitchen to make this week’s meals, I thought I’d better get on here already and fulfill my promise to say something.

So the gist of the original article is that the Diagnostic and Statistical Manual of Mental Disorders (DSM – some version) is thinking about reclassifying Asperger’s Syndrome as an unspecified illness on the Autism spectrum. Currently, people with Asperger’s Syndrome are regarded in some places as high-functioning autistic and in others as having an entirely separate — and less severe or stigmatized — disorder. This has several benefits for people with Asperger’s Syndrome: they get a label, which means that there’s funding for help, and they are sometimes less stigmatized than peers who are seen to be “lower functioning.”

On the other side, the author of the original article (Roy Richard Grinker, Disorder out of Chaos) implies that the separation between Asperger’s Syndrome and the Autistic spectrum disorders is misleading and doesn’t describe functionality — which changes rapidly when kids are little. Because I’m not autistic and don’t have Asperger’s and haven’t spent much time studying or socializing with people in either category, I really can’t evaluate either side of this argument. But there is it — at least my interpretation of it.

What I find really interesting in all this is the comments, which make the following points:

  1. There is nothing wrong with separating the two categories — after all, we declare our uniqueness in myriad other ways, so why not through our diagnoses?
  2. Some terms help us navigate the world better than others. Will the diagnosis of autistic spectrum — not otherwise specified help us more than Asperger’s Syndrome has?
  3. “Quirkiness” doesn’t get help or funding, Asperger’s does.

I think what surprises me most about these comments is how aware they are of the social construction of illness. I’ve spent a bit of this weekend working on an essay on mental illness that I’m submitting for publication. Because it’s much more a personal narrative, with inserts of philosophy and psychology, I’ve not been dealing with the social construction of it. But I know it’s there. For me, I’ve seen the labeling of an illness as an immensely complicated and political decision that has a lot of negative consequences. When does one disclose? Why? What happens next? How do you face the stigma of a disclosure?

These writers see that label as a positive thing, and I find that a breath of fresh air. It’s nice to now that labels help people, at least in some cases, at least some of the time. I want to cheer on the Times and these writers for being willing to look beyond the stigma to see what’s useful in these labels and this way of looking at the world, because it’s opened up some new possibilities for how I see it. And that’s what writing, what communicating, is supposed to be about after all isn’t it? It’s about moving beyond the bubble to listen to and emphasize and care about someone else?

Well, that seems to be a longer conversation and I’ve got a lentil herder’s pie calling me from the kitchen. But I’m back, internet! Happy President’s Day to those in the U.S.!

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