By Casey Schwartz
The Daily Beast
Late Thursday night, front and center on The New York Times website, came surprising—and uncomfortable—news. “New Definition of Autism Will Exclude Many,” the headline said.
Earlier Thursday, at a medical conference in Iceland, Fred Volkmar, a renowned autism expert and the director of the Yale Child Study Center, had presented a few glimpses of his newest piece of research. Not yet published, his study purports to show that a new set of diagnostic criteria for autism, currently being developed by an expert panel appointed by the American Psychiatric Association, could result in a highly restrictive definition of the disorder, excluding a major portion of those who are currently considered autistic.
The definition could have far-reaching effects, because it is being prepared as part of revisions to the forthcoming DSM V, the fifth edition of the APA’sDiagnostic and Statistical Manual of Mental Disorders, a manual that is the standard reference for mental disorders, affecting everything from research and treatment to insurance coverage. DSM V will be the first major revision of the text in 17 years.
Volkmar’s study has been accepted for publication in the Journal of the American Academy of Child and Adolescent Psychiatry, and he expects it to run in March or April. At the moment, however, the study is under embargo, and its contents remain largely unknown to members of the autism research community.
In fact, Volkmar’s sudden announcement in Iceland came as a surprise to many in the scientific community.
“We’re really just hearing about this today,” says Cathy Lord, the director of the new Institute for Brain Development and a member of the DSM committee working on the diagnostic changes (Volkmar at one point was a member of the committee, but resigned). “It was not sent to the committee, it was not brought up to the committee, and it’s embargoed, so technically they’re not even supposed to be talking about it. You’re supposed to not even release the information until it comes out in the journal.”
Lord also notes that the Icelandic medical conference was a notably random forum in which to present such findings.
The news from Iceland sounded dire. But, Lord says, “families should not panic. There really is no other indication that this is going to radically constrict the diagnosis of any kind of autism spectrum disorder—and there have been numerous other studies. The concern about what Fred [Volkmar] has done—and again I don’t really know—is that he was using old data that was very sketchy.”
The reason that Lord doesn’t “really know” is that she, like others on the DSM committee, have received no prior information about what Volkmar’s analysis shows and how exactly it shows it.
What is known comes from Volkmar himself. He and his team at Yale examined the case records of roughly 1,000 children diagnosed with autism in 1993 and asked what would happen if the proposed new diagnostic criteria were applied to the group. Focusing on the highest-functioning members—372 out of the sample of 1,000—Volkmar concluded that more than half of the children diagnosed with autism in 1993 would no longer receive the same diagnosis.
Losing a diagnosis has dire implications for families who are dependent on state-funded disability services, which run the gamut for children with autism—from special schooling and behavioral therapies to long-term support, including health care and specialized housing. Proper care for a person with autism is an expensive, lifelong undertaking.
It is understandable that the Volkmar findings set off a hue and cry on websites devoted to autism. “How about it we no longer treat Stage 1 cancer, OK? After all, it’s not really that bad. Sound good America? That’s DSM 5 autism changes,” the website Age of Autism tweeted.