Saturday, November 7, 2009

The Asperger's diagnosis

An article in today's New York Times - A Powerful Identity, a Vanishing Diagnosis - reports that the "Asperger's Syndrome" diagnosis may be eliminated from the 2012 diagnostic manual (D.S.M.-V). In its place, would be a single broad diagnosis of "autism spectrum disorder."

According to the article, the American Psychiatric Association is expected to post the working group's final proposal on the diagnostic manual's web site in January and invite comment from the public. That will be a fascinating comment thread to follow. I have not yet met an individual with Asperger's Syndrome who was reluctant to express his or her strongly felt views on a topic.

I first heard the word "Asperger's" from a speech and language teacher when our son was in first grade, in the fall of 1996. She had only recently learned about the Syndrome and thought it might fit - I ran a computer search that night, and she was right. The label didn't lead us to a miracle cure - and we weren't looking for one. It did help connect us with a virtual community of parents of kids with Aspergers and adults with Aspergers so we could start learning what others were doing to help support and compensate for the confusing range of qualities and behaviors that often appear as part of Asperger's Syndrome.

Interestingly, we first suspected that our son might have autism much earlier, and our pediatrician (who thought we were being neurotic first time parents) referred us to a respected developmental psychologist when our son was three. The psychologist tested our son and reported that he could not be autistic because he was "not retarded." Thankfully, the understanding of autism spectrum disorders has advanced significantly since then.

Soon after we discovered the Asperger's Syndrome label a child psychologist explained that, in her view, Asperger's Syndrome describes a cluster of seemingly unrelated skills and deficits that come together for some individuals on the autism spectrum - and, make no mistake, wherever you happen to fit on the autism spectrum, "life is going to be hard." It sounds like the D.S.M-V may be headed in this direction.

Our son attended a high school for kids with high functioning autism, Asperger's Syndrome and non-verbal learning disabilities. There were about 50 students and it was a good laboratory within which to test the saying that - "If you have seen one person with Asperger's . . . you have seen one person with Asperger's." These kids were all unique, and they all identified in different ways. But the truth is, almost all of them faced significant challenges that will make life hard - the two hallmarks were social awkwardness and great difficulties with organization (what psychologists refer to as executory planning). The great joy of the school, was that many of the students also presented unique and fascinating strengths and refreshing honesty.

I am watching these former high school students enter young adulthood now. And, much as I wish it was not true, I think life on the spectrum is hard. But hard does not mean bad - just hard. One of my co-workers shared a story the other day about an accomplishment. She hiked to the bottom of the Grand Canyon in early September. The next morning, as she stood in 97 degree heat in the shade she looked 7,000 feet up at the rim and saw two tiny trees at the top. And she wondered whether she could ever make it to the top. Of course, she did, one step at a time. That image works for me. It is a hard climb, but a beautiful climb, and we are taking it one day at a time.

I am going to be very interested to read and hear what the Asperger's and autism communities have to say about the proposed diagnostic changes. I've always thought that the label doesn't matter - what does matter is understanding the full range of support that might help each individual capitalize on his or her strengths and address his or her challenges. However, I think I may have been wrong. We do, after all, live in a "neurotypical" world and labels, as it turns out, can matter a lot in dealing with the social services maze.

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