Wednesday, February 17, 2010

asperger's chic

I've always been turned off by what I have come to call Asperger's Chic. By that I mean the fascination that people off the spectrum have with people on a particular part of the spectrum, people with the Asperger's label. People off the spectrum are amazed by some of these folks' ability to memorize, how some of them have keen senses of sight or hearing, or the way they can do their own thing in the face of what seems to the rest of us to be oppressive and aggressive forms of popular culture. Those lucky folks with Asperger's. They remember everything. They see everything. And they don't give a damn.

The New York Times recently ran an op-ed piece about the new edition of the DSM, the Diagnostic and Statistical Manual of Mental Disorders: In the new version, editors have removed labels such as Asperger's and PDD (pervasive development disorder) in favor of the more general term, autism spectrum disorder. The editors reasoned that the labels obscured as much as they illumined. They were wrong as often as they were right.

While many clinicians welcome this move for these reasons, the author of the editorial piece hailed it for another. The writer, the father of a daughter who had received the Asperger's label, thinks its time to get over what I call Asperger's Chic. He called out his readers to stop understanding this part of the spectrum as the good part and the other parts as devastating. He asked his readers to interrogate their impulse to see Asperger's as the cool sort of autism.

I have some sympathy with the writer. I cringe when people congratulate me on my child's early reading or his capacity to memorize all the presidents. I get riled when people assume that it's great that my kid will be insusceptible to some of our culture's lower offerings. But think about it for a moment. Wouldn't I rather have a kid whose brain works?

Because I feel this way, I hit the roof when I read the editorial's last lines: "We no longer need Asperger’s disorder to reduce stigma. And my daughter does not need the term Asperger’s to bolster her self-esteem. Just last week, she introduced herself to a new teacher in her high school health class. 'My name is Isabel,' she said, 'and my strength is that I have autism.'”

Isabel, I'm glad you feel that way, but I don't share in this perspective. Or maybe I should say that I cannot see autism as an unqualified strength. There's no way to utter that sentence without also acknowledging all of the difficulties, all of the struggles, all of the ways that a goofy brain can be both fun and maddening. I would never want Martin to feel that he has some sort of terrible weakness. And I acknowledge the way his particular brain might find interesting and unexplored ways to interact with the world. But not without missteps. Not without pain.

Will getting rid of Asperger's Chic just lead us to Autism Chic?


  1. I admit I've clung to the idea of Asperger's as being the "good" part of the spectrum, for my own sanity regarding my son, without thinking about the impact of that belief. Your post was very eye-opening to me. I am not in favor of abandoning all distinctions on the spectrum, b/c I think that will slight all sorts of people. Or am I just protecting myself?

  2. I agree with you - while I consider my son's autism to be part of who he is, it's not all that he is. He has to work *so hard* all day just to get to some reasonable level of coping. I don't think that he is a special unicorn or some mythical creature that should be treated as such. We are trying to teach him to live in the world, since I don't think that we can teach the world to let him live in it happily, the way that he is.

  3. I thought of you while listening to DAYS of NPR's coverage of the DSM revisions and countless stories about autism and asberger's. I'm glad to hear you weigh in on this. You continue to educate me with every post.