Tuesday, February 23, 2010

What's in a name and is it even important?

Let someone solicit an opinion about Asperger's syndrome and a clamor of voices answer back. I would venture, to use a cliche, that it's like waving a red flag in front of a bull.

The issue that I am considering is whether Asperger's syndrome should remain a specific diagnosis or whether, as is being proposed by the American Psychiatric Association, Asperger's syndrome and other autism spectrum mileposts should be absorbed into one diagnosis of "autism spectrum disorder."

These revisions would take effect with publication of the fifth edition of the APA's Diagnostic and Statistical Manual of Mental Disorders (DSM). The APA is presently inviting comment upon these proposed changes.

Writers have issued opinions in a variety of venues, including the New York Times, arguing the relative benefits to using the single diagnosis of "autism spectrum disorder" and to keeping "Asperger's syndrome" as its own diagnosis. Most of these arguments are well-thought out and offer valid points, including self-identity with a particular term.

I am unaware of similar arguments to retain as separate diagnoses, "childhood disintegrative disorder" and "pervasive developmental disorder (not otherwise specified)."

My personal opinion is that I don't care whether my possession of certain traits is described by "Asperger's syndrome" or by "autism spectrum disorder." I make use of both terms. "Aspergian" is useful as a noun or adjective but as far as my insurance is concerned, the valid billing code term is "autism."

Of far greater concern to me is that the progress made in acknowledging a spectrum of intensity among the condition's documented traits doesn't give way to more rigidly-defined criteria as were used prior to the fourth edition of the DSM.

When I was growing up, my challenges remained unclassified. I knew that I was "different" from other people but had no access to an explanation of exactly why and how. Learning in adulthood that my differences had a name, that they were documented and understood and that there were other people like me was a revelatory moment for me.

As I was reflecting how to formulate my opinion in the current debate, my attention was struck by a recent post on the Asperger Women Association's Facebook "wall." Linking to an article about a new movie, "My Name Is Khan," Alyson Bradley AsPlanet reminded other members of the group that other people around the world "struggle to be accepted at all and dare even to mention they are on the autism spectrum."

Khan, the title character of the movie, happens to have Asperger's syndrome and, after 9/11, he undertakes to be an ambassador for Islam. His message for Americans and for the U.S. president is, "My name is Khan and I am not a terrorist."

Similarly, when I attempt to be an ambassador for Asperger's syndrome and for ASDs, I am by far most urgently concerned with broad and inaccurate stereotypes to further a political agenda: by a therapist, self-promoting her new book, attempting to assign all blame in challenged male-female relationships to the male partner with Asperger's syndrome or by a nonprofit agency's video portrayal of "autism" as a malevolent entity that deliberately destroys families.

When confronted by these examples of what I consider hate speech, does it really matter, after all, which term psychiatric professionals use to describe my condition? What matters is the degree of accuracy with which my condition is understood and depicted.

To learn more about proposed draft revisions for the fifth edition of the DSM, visit www.DSM5.org. Public comments are being accepted until April 20.

Published Feb. 23, 2010 in the Lake County Record-Bee

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