Proposed changes to the definition of autism might make it much less likely for a person to be diagnosed with the disorder.
A panel of experts from the American Psychiatric Association (APA) is reevaluating the definition of autism currently published in the Diagnostic and Statistical Manual of Mental Disorders (DSM). The DSM is the standard reference to determine treatment, insurance coverage, and access to services for a variety of mental illnesses. Although no current patient will be affected by the new rules, research by Yale Child Study Center Director Fred Volkmar suggests that the revision may disqualify a large number of intellectually disabled patients from receiving a diagnosis of autism spectrum disorder in the future.
Currently, a person would qualify for a diagnosis of autism spectrum disorder by exhibiting six of the twelve behaviors on the criteria list, which include social troubles, communication and play troubles, and restrictive repetitive interests. However, the potential change would eliminate Asperger syndrome and pervasive development disorder. “They are lumping things together so that there is going to be less flexibility,” Volkmar said. “They are going from 2000 combinations of the spectrum to a handful.”
Volkmar formerly served on the APA’s expert panel to update the manual, but he resigned early on. Volkmar and colleagues conducted their own study to see the revision’s impact by analyzing data from a 1994 study that served as a basis for the current autism criteria included in DSM-IV, which is the most current edition of the DSM. The researchers found that under the new definition, 65 percent of children and adults with high-functioning forms of autism would not meet the current definition of autism. “This is a concern,” Volkmar explains, “because getting the label means they are getting services.”
Experts currently working on the revised definition of autism disagree with Volkmar’s early findings. The study’s focus on a high-functioning group may have slightly exaggerated the estimated impact, the authors acknowledge. “Valid criticism would be that it’s not perfect. We don’t have the exact same definition for the disorder that we had in 1994. However, there should be studies independent of what the APA is doing for all the obvious reasons,” Volkmar said. He stressed that studies in Finland and Louisiana are showing similar results and in the next few months more studies will be available. Volkmar stated that he hopes the APA is going to be responsive to the data.
While the APA is struggling to draw the line between usual and abnormal, parents and loved ones of those with disorders are getting worried. Tens of thousands of people are receiving state-backed services to help offset the disorders’ disabling effects, which sometimes include severe learning and social problems, and the diagnosis is, in many ways, central to their lives.
Volkmar first presented his preliminary research results in September at Yale and in October at the Institute on Autism American Academy of Child Adolescent Psychiatry Meeting in Toronto. Hoping to have a voice in the ongoing debate over definitions, Volkmar and colleagues are publishing full study results in the April print edition of Journal of the American Academy of Child and Adolescent Psychiatry.