Hoarders beware

The bible is about to be rewritten, and many are unhappy about it. But this probably isn't the one you've read: It's the Diagnostic and Statistical Manual of Mental Disorders, or the DSM, an authority for tens of thousands of psychiatrists in the United States and elsewhere. The 943-page guidebook is responsible for defining schizophrenia, post-traumatic stress disorder, ADHD, depression, and every muddled mental state in between. Insurance companies refer to the DSM to write up health coverage, and criminal courts pass sentence with its disorders in view.

Due for release in May 2013, the fifth edition of the DSM-the first major revision since 1994-may overhaul the structure of the book and include new diagnoses like binge eating disorder and psychosis risk syndrome. The manual's publisher, the American Psychiatric Association (APA), has invited public comment on its efforts at improvement, aimed at avoiding misdiagnoses and helping doctors catch the early signs of a disorder. But some psychiatrists think the changes go too far, and will result in an epidemic of "overdiagnosis," where patients receive powerful medications to treat symptoms that may actually be quite common in society.

One is Allen Frances, the former chief of psychiatry at Duke University Medical Center, who in the early '90s led the team that wrote the current edition of the manual, the DSM-IV. Frances believes the proposed changes are well-intentioned but could increase the number of Americans diagnosed with mental disorders by "tens of millions."

Take psychosis risk syndrome, one of a novel category of "risk syndromes" that would indicate whether a patient might be on the path to a full-blown mental illness: "The problem is that for every patient accurately identified, at least three or four, and as many as seven, eight, or nine people will be misidentified-people who would not have gone on to have a psychotic episode," Frances told me. "And so this means that many individuals who don't need it will receive medications that can be quite harmful." (Antipsychotic drugs have a number of side effects, including an average weight gain among teens and children of 12 pounds or more in the first 12 weeks.)

Looking back at his work on the DSM-IV, Frances now believes his team wrote definitions into the current manual that inadvertently triggered what he calls three "false epidemics"-an overdiagnosis of ADD, autistic disorder, and childhood bipolar disorder. "Very small changes can sometimes be amplified, particularly by drug company marketing, into wildfire epidemics," he said, noting that the new revision team should learn from the past mistakes. "Mark Twain said, 'History doesn't repeat itself, but it certainly does rhyme.'"

Jerome C. Wakefield, an expert on psychiatric diagnostics at New York University, said he agrees with the concerns about overdiagnosis, in spite of the APA's good motives to prevent illness early on: "The psychosis risk syndrome is a bad precedent. A lot of things give you risk for disorder. I mean, running for a bus increases your probability of a heart attack temporarily and so on. You could start pathologizing everything in life if you start pathologizing risk."

An APA researcher and member of the DSM revision team, William E. Narrow, told me by email that he and his colleagues were chiefly concerned with delivering accurate diagnoses based on the latest research: "For the risk syndromes being proposed, the benefits of early detection of these very serious disorders were deemed to outweigh the drawbacks of a false positive assessment."

APA president Alan Schatzberg has said he believes the changes will actually reduce the number of people diagnosed overall. Temper dysregulation with dysphoria is a new category anticipated to cut down on the number of kids diagnosed with childhood bipolar disorder or oppositional defiant disorder. (But critics say the new label could wrongly medicate a lot of temper-tantrum-throwing kids.) Another new diagnosis, mixed anxiety depression, is intended to treat people who don't qualify for major depression or an anxiety disorder alone. (Critics say the criteria too broadly include symptoms widespread in the general population, such as "having trouble relaxing.")

A uniquely touchy issue is the APA's proposal to remove the current distinction between "classic" autistic disorder and Asperger's disorder, combining them under the single label of "autism spectrum disorder." (Asperger's is widely viewed as a mild form of autism marked by communication disabilities, average or high intelligence, and sometimes obsessive subject interests.)

Michael John Carley, executive director of GRASP, the Global and Regional Asperger Syndrome Partnership, said there would be long-term pros and short-term cons to the relabeling. One of the cons: the seeming incongruence of lumping together, say, a socially awkward genius and a person who might be nonverbal and need lifelong care. In the world of autism, said Carley, where some people need social services while others need to be rid of them, "There's a great fear of being judged by the image of that other extreme end of the spectrum."

Some may continue to refer to themselves as "Aspies" in spite of any changes. Carley, who was himself twice diagnosed with Asperger's, said the redefinition would be a "shift" for him, but he doesn't want to play doctor either. Scientifically, he sees no reason to keep the two labels separate-the faces of autism are far too varied to make its diagnosis simple: "If this pushes all of us, collectively, to be able to truly grasp how complicated this is . . . after some trepidation, I think that this is actually a very good thing."

Wakefield believes some of the new diagnoses complicate matters a little too much: "There's a new disorder called hoarding disorder that's going to be the joy of all beleaguered spouses who are fed up with their partner saving everything." Another, binge eating disorder, would qualify those who overeat once a week for three months. "I call that 'wedding and bar mitzvah syndrome,'" chuckled Wakefield.

He added that a new category of "behavioral addictions," which would include the existing pathological gambling diagnosis, could pave the way for other addictions some psychiatrists would like to include, such as "internet addiction." Another questionable one: hypersexual disorder, applied to those whose desires disrupt their lives.

Narrows of the APA said the revision team had been careful to distinguish the new disorders from "high sex drive" or "routine overeating."

Frances, the former Duke psychiatrist, hopes a reaction from doctors and the public will prompt the DSM team to reconsider the changes it's proposed. He and Wakefield both said the team has been too secretive during the revision process of the last three years, using confidentiality agreements to prevent dialogue with other experts in the field. "Many of these issues should have been aired long ago," said Wakefield.

But Narrows disputed that, claiming the revision process "has been the most open and transparent DSM process to date," with media interviews and regular research presentations at science conferences. The proposed revisions are posted at dsm5.org, where the public can comment on the changes until April 20.