A storm was set off in January after a study by Yale University researchers said that proposed new diagnostic criteria for autism would result in far fewer children receiving the diagnosis. While that might sound like a good thing — the number of children diagnosed with the neurodevelopmental disorder has skyrocketed to 1 in 88 since 1999 when my now teenage son Charlie was diagnosed — many parents and many individuals who are themselves on the autism spectrum strongly objected to the changes.
DSM (for Diagnostic and Statistical Manual of Mental Disorders) criteria affect treatment, research and insurance; they impinge on decisions about whether or not someone will receives therapeutic and educational services. The proposed new definition would remove the diagnoses of “Asperger’s Syndrome” and “pervasive developmental disorder not otherwise specified” (PDD-NOS). Instead, there would be one all-encompassing category, “autism spectrum disorder” (ASD), and individuals would be assessed as having varying severities of certain criteria, in the areas of social interactions, communication ability and repetitive behaviors.
My son Charlie isn’t affected by the changes in criteria. His diagnosis has always been “autism,” plain and simple; sometimes people have said he has “classic autism.” Some families we know have seen their children’s diagnosis change from “mild autism” and/or PDD-NOS to Asperger’s. As there is currently no biomarker for autism, a diagnosis is made via the observations of experts, following the DSM criteria.
At the annual meeting of the American Psychiatric Association this week, researchers presented data from an unpublished study that found that the new criteria will not lead to drastically fewer numbers of autism diagnoses. The New York Times says that 300 children were tested (the Wall Street Journal says that over 600 were tested.)
A comment made by Susan Swedo, a senior researcher at the National Institute of Mental Health and head of the working group about the DSM revisions, at a panel on Tuesday seems likely to spark some further controversy. According to the New York Times, Swedo 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.”
The January study had found that as many as 35% fewer children currently receiving services would lose them. The APA had posted the proposed new criteria for autism as well as for other conditions online and has received over 10,500 comments many of them “critical,” says the New York Times. In addition, organizations including GRASP (Global and Regional Asperger Syndrome Partnership) which represent adults and teenagers on the spectrum have raised a huge outcry.
Some critics, especially Dr. Allen Frances, former task force chairman and professor emeritus at Duke University, have argued that the autism criteria have become too broad, leading to autism becoming the latest “fashionable” diagnosis for parents and individuals to seek out. But if there is no huge difference in the numbers of those diagnosed with the old versus the new criteria, why should they be changed at all, some are asking: “Why mess with it at all?” says Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and senior author of the January study.
Who should be able to say what autism is, psychiatrists and clinicians or those who are on the autism spectrum and those who daily care for those on the spectrum?
As the New York Times notes, the APA task force is assenting to withdraw revisions for criteria that would have increased the number of people identified as having psychotic or depressive disorders. The new version of the DSM is scheduled for released in May of 2013.
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