Changing the Diagnoses

It's not a surprise that each time researchers and other experts revise the "bible" of psychiatric diagnosis in America, they change categories and definitions of disabilities. But when that change hits close to home—say, narrowing the definition of autism spectrum disorder—it gets a lot more press than usual.

The next edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which psychiatrists and other practitioners use as a guide to diagnose psychiatric disorders, is in the late stages of a long revision process; it goes to the printers in December. Many of the suggested changes have been posted for comment for the past year. This past week, The New York Times weighed in on two proposed changes.

In "New Definition of Autism Will Exclude Many, Study Suggests," writer Benedict Carey describes a recent analysis by Dr. Fred Volkmar that estimates how many people now classified as having Asperger's syndrome or "pervasive developmental disorder, not otherwise specified" (PDD-NOS) would not qualify as autistic under the proposed guidelines. Without the "autistic" label, these people might not qualify for extra help at school; insurers might not cover their therapy. Small wonder people started to panic (at least in the comments on the Times story). Still, as Gil Tippy of the Rebecca School in New York advised on the Thinking Person's Guide to Autism site, "If you, or your son or daughter has an appropriate diagnosis on the Autism Spectrum now, responsible clinicians will find that you or your children meet the criteria for Autism Spectrum Disorder under the new guidelines."

Another change highlighted this week would add "grief and grieving" to the list of criteria used to diagnose depression (writer Benedict Carey also mentions other changes, too). A lively discussion follows on the Times's Well blog.

Back in 2009, when discussion about the DSM-5 was starting to roll, we invited the scientists leading the revision process to describe their plan. Their essay, for our Cerebrum periodical, may not have been one of our better-read pieces at the time, but has grown in interest since. We paired it with a call from Johns Hopkins psychiatry professor Paul R. McHugh that the editors focus on disorders’ causes and disease processes, in part to improve upon what the two most recent editions of DSM have produced: “a psychiatry that’s boring.”

Early in 2011, former Harvard provost Steven E. Hyman weighed in for Cerebrum on how the process was going—his title: "Diagnostic Classification Needs Fundamental Reform." (Hyman is a member of the DSM revision task force, but was writing as an individual.) In his argument, he acknowledges that radical reform may need more time (i.e., the 10 years until DSM-6). In terms of individual diagnostic categories, though, "I would recommend that the DSM-5 take a conservative approach, leaving criteria unchanged unless compelling new evidence suggests that a change would be beneficial. Whatever the ultimate approach to the DSM-5, it is critical that the scientific community escape the artificial diagnostic silos that control so much research, ultimately to our detriment."

(Also, Seth Mnookin has posted a great roundtable discussion on the image of autism, including who speaks for autistic people and how the spectrum is covered by the media.)

–Nicky Penttila

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