Whither Aspergers?

The news that Asperger’s Syndrome may be removed from the next edition of the Diagnostic and Statistical Manual of Mental Disorders (better known as “DSM”) is spreading like wildfire. There is already intense debate. Bloggers are writing about it too:

• Aspergers, Autism, and Ambivalence: On Losing My Label
• Autism and Aspergers in the DMV-V: Thoughts on Clinical Utility
• Autism, Aspergers, and Definitions: Names Don’t Really Matter
• Is it Autism or Aspergers, Part 2?
• Aspergers No More!
• No More Aspergers Syndrome?

Although the final edition of the proposed DSM-V will not be published until 2013, some people find the move to “merge” Asperger’s with autism disturbing.

Autism spectrum is a neurological disorder. It affects learning, language, social development, and behavior. But not all people with autism are the same. People with Asperger’s are regarded as high functioning individuals who are extremely intelligent, yet their social interactions are poor and their behavior may be awkward. In contrast, some people with autism may have extremely low IQs, as well as poor social and behavioral developments. The differences between a diagnosis of ‘Aspergers’ and ‘autism’ can be significant.

What are the reasons that the American Psychiatric Association (APA) wants to eliminate ‘Aspergers’? According to this report, one reason is because ‘Aspergers’ has become “too vague.”  I found this rationale very interesting since the next edition of the DSM eliminates “substance abuse” and will be replaced by more specific diagnoses, such as “cannabis-use disorder” and “alcohol-use disorder.” Why, then, does the DSM propose to eliminate Asperger’s and opt for generalization such as “low functioning autism” and “high functioning autism”?

To gain better insight, I read the relevant proposed revisions for Asperger’s Disorder in the proposed DSM-V. There, I learned that the rationale for eliminating ‘Aspergers’ is apparently grounded in the view that ‘Aspergers’ may be an overused term (“‘Asperger syndrome’” is used loosely with little agreement”). Furthermore, a single spectrum is just more reflective of the symptoms: patients should be given a diagnosis based on the severity of the symptoms rather than a diagnosis based on a specific “condition” within the spectrum.

Even so, there is at least one report suggesting that certain members of the APA are engaging in politics. Given that the DSM should be grounded in science, any form of politiking associated with the drafting of the DSM ought to be prohibited. Furthermore, the APA is inviting public comment. This, too, is contrary to science. According to one NPR reporter:

The APA has made a big deal of the DSM being the product of an intense scientific process. So if the group changes the contents based on interest group politics, they open themselves to fresh criticism that the DSM is less scientific than claimed.

Dr. Simon Baron-Cohen, the director of Autism Research Center at Cambridge University, wrote an op-ed in the New York Times. Dr. Cohen is concerned about the proposed changes in the DSM because there has not been sufficient scientific and cultural research to justify the change. He writes:

[S]cience hasn’t had a proper chance to test if there is a biological difference between Asperger syndrome and classic autism. My colleagues and I recently published the first candidate gene study of Asperger syndrome, which identified 14 genes associated with the condition. . . . We don’t yet know if Asperger syndrome is genetically identical or distinct from classic autism, but surely it makes scientific sense to wait until these two subgroups have been thoroughly tested before lumping them together in the diagnostic manual. I am the first to agree with the concept of an autistic spectrum, but there may be important differences between subgroups that the psychiatric association should not blur too hastily.

See also Dr. Roy Richard Grinker’s New York Times op-ed, which adopts a different viewpoint.

It remains to be seen whether Asperger’s will ultimately be lumped into autism and what impact this will have on special education. There is some concern that the proposed changes could affect special education services. One report, however, suggests that schools in Wisconsin and Minnesota will not be affected if the changes take place.

How the proposed changes could ultimately affect students with Asperger’s in school is a complex issue that special education attorneys will need to be prepared to address.

Even if the DSM-V is adopted, there is, arguably, nothing to stop psychiatrists, psychologists, and other health care professionals from using the term ‘Aspergers.’ And there is, of course, nothing to stop “Aspies” from describing themselves as such–they are proud of it.

© 2010, Matthew Stoloff. All rights reserved.

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