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Wednesday, May 9, 2012

The Politics of DSM-5

At The New York Times, Benedict Carey reports on the annual meeting of the American Psychiatric Association:
The proposed definition of autism, which would eliminate related labels like Asperger’s syndrome and “pervasive developmental disorder,” came under fire in January, when researchers at Yale University presented evidence that about half of the people who currently have a diagnosis on the higher functioning end of the “autism spectrum” would no longer qualify under the new definition.
At this week’s annual meeting, researchers presented data from an unpublished study of some 300 children, finding that the proposed definition would exclude very few who currently have a diagnosis of autism or a related disorder.
But meeting attendees got mixed messages on autism. In a talk on Tuesday, Dr. Susan E. Swedo, head of the panel proposing the new definition, said that many people who identify themselves as “aspies,” for Asperger’s syndrome, “don’t actually have Asperger’s disorder, much less an autism spectrum disorder.” Dr. Swedo is a researcher at the National Institute of Mental Health.
The issue is hardly settled. Findings from published studies are conflicting, but three recent analyses provide support for the Yale estimate, and more papers in the pipeline are also documenting a significant reduction in numbers of those who would qualify under the new criteria. Getting such a diagnosis is critical to obtain state-financed services for children with special needs.
“I certainly hope the D.S.M. task force is right, that the numbers won’t change much,” said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and senior author of the study presented in January. But if the new definition does not change who gets a diagnosis, he asked, “Why mess with it at all?”
At MedPage Today, John Gever is more explicit about Dr. Swedo's comments:
The head of the American Psychiatric Association committee rewriting the diagnostic criteria for autism spectrum disorders took on the panel's critics here, accusing them of bad science.
Susan Swedo, MD, of the National Institute of Mental Health, said a review released earlier this year by Yale University researchers was seriously flawed. That review triggered a wave of headlines indicating that large numbers of autism spectrum patients could lose their diagnoses and hence access to services.
Swedo spoke at the American Psychiatric Association's (APA) annual meeting, in her role as chairperson of the work group developing new diagnostic criteria for neurodevelopmental disorders in DSM-5, the forthcoming fifth edition of the APA's Diagnostic and Statistical Manual of Mental Disorders.
She was especially incensed by reports in consumer media about the Yale group's study, led by aNew York Times article with a "blaring" headline that read, "New Definition of Autism May Exclude Many, Study Suggests." The Yale study, according to the Times article, found that most patients with Asperger's syndrome and about 25% of those with overt autism would not qualify for those diagnoses under DSM-5.
Bloggers in the autism spectrum community then got the numbers wrong and claimed that DSM-5 would deprive 65% of all autism patients of their diagnoses, "striking fear in the hearts of families," Swedo said.
In fact, she said, the Yale study and hence the Times and other reports messed up. "I can assure you that it is not true," she told APA meeting attendees.