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Spring 2014
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Revisions to a clinical manual may have unintended consequences.
As the field of psychiatry prepares to create the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), due out in 2013, the debate about how autism should be classified illustrates the complexity of the process.

The work group tasked with the behemoth job of updating the DSM—the “bible” for psychiatric diagnoses—is making a bold recommendation: eliminating the separate categories of classic autism, Asperger’s syndrome, and another mild form of autism known as pervasive developmental disorder, not otherwise specified (PDD-NOS). Instead they would be lumped together into a single category called “autism spectrum disorder.” The rationale? Some experts say there are no clear diagnostic boundaries between the three, and that autism
as a single diagnosis with different levels of severity—ranging from high functioning to profoundly impaired—will simplify the system.

Yet changing the definition of autism and grouping together previously separate diagnoses makes many professionals—including us—wary. Clinicians will now be asked to think about autism as a diagnostic possibility in cases where it would have never been considered just 15 years ago. Because epidemiological statistics are often compared without noting how definitions may have changed over time, this change may feed the so-called “autism epidemic” rather than control it.

Along the same lines, a single “autism spectrum disorder” diagnosis means that meaningful distinctions between categories will be lost. For example, children with Asperger’s and those with high functioning autism have many characteristics in common, including poor social interactions that make it difficult to maintain friendships. Children with Asperger’s are acutely aware of their social isolation and are often miserable because of it. In contrast, for youngsters with high functioning autism, the parents are the ones who typically are more concerned about the lack of friendships than the children themselves. Caregivers and clinicians who work closely with both groups do not see this as an insignificant difference.

Another major implication of these new guidelines is the potential loss of identity for the proud members of “Aspie Nation,” a term that represents the many outspoken people with Asperger’s who have fully embraced their diagnosis. Through their efforts, society has begun to accept Asperger’s; it has even become part of the popular culture. If these diagnostic changes are accepted, people with Asperger’s will suddenly have to deal with the stigma that goes along with being labeled autistic. It’s not surprising that Aspie Nation vigorously opposes them.

The DSM-5 will not be a purely scientific document; there are inevitable social, political, and economic ramifications. Although we’ve made considerable research and clinical strides in the 15 years since the last DSM was released, the primary obstacles remain the same: we still do not conclusively know what causes autism, and the diagnosis rests entirely on descriptions of behavior and function. Biologic markers, be they genetic, chemical or neuroanatomic, are needed.
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