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’s Diagnostic 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.
In an email from Iceland, Volkmar stated that he was not in favor of the changes that the DSM task force is proposing, for reasons including:
“It is a complication in the US if it eliminates service eligibility it is a complication for research if we radically change practice in this case we’d essentially be moving back to a much earlier and more rigid view of ‘classical’ autism (repacked as autism spectrum which I’d think is actually a misnomer—itself rather a problem!)”
But the outcome that Volkmar describes is not at all realistic, says Lord. In fact, she was unequivocal in her assurances to the contrary.
“Anyone who has a valid diagnosis of ASD [autism-spectrum disorder] now should not have to get a rediagnosis,” she said.
Lord questioned how it was possible for Volkmar to have arrived at the conclusions he did, given that the sample he was using—gathered in 1993—had not been asked the same questions to establish a diagnosis that they would be asked once the DSM V’s changes are in place.
In other words, according to Lord, the children included in Volkmar’s analysis would not meet the new criteria, because at the time they were diagnosed, they weren’t asked the questions that the new criteria will demand. The information was simply not gathered at the time of their assessments. To come to the conclusion, then, that a major portion of these children would no longer be included on the autism spectrum is the product of faulty reasoning.
“The fact that they didn’t meet the criteria—it just means that nobody asked them,” says Lord. “I don’t know how you could interpret that data—it’s just not interpretable.”
What the DSM V committee, including Lord, is proposing is to merge all the various categories that currently exist—which include Asperger’s and “pervasive developmental disorder, not otherwise specified” (also known as PDD-NOS)—into one diagnosis: autism-spectrum disorder. In addition, the DSM V would change the specific symptoms required to locate a child on the autism spectrum.
Harold Koplewicz, a child psychiatrist and the director of the Child Mind Institute in New York, also expressed concern about Volkmar's analysis.
“Unfortunately, Dr. Volkmar’s presentation—because no one has seen the paper yet—has caused tremendous alarm among parents who are now afraid that if the diagnosis gets more exclusive, that their children will be left outside the tent and won’t qualify for services,” Koplewicz said.
“We can understand why parents are anxious, but this is all very premature. The fact that a diagnosis can become more rigorous and more specific doesn’t mean that kids who do not meet the diagnosis still don’t have another disorder that also still will require intervention.”
Koplewicz, who is not a member of the DSM task force, offered his perspective on its mission.
“What the DSM V is attempting to do is to more carefully focus on a more rigorous diagnosis of kids with this very chronic and very severe illness,” he said.
The most important thing, Koplewicz said, was that the DSM task force proceed according to a scientific process—not a political one.
While Volkmar himself wasn’t available to discuss the study over the phone, his colleague and co-author, James McPartland, also at Yale, did comment on what they hope their findings will achieve.
“The idea is that this can help the process,” by which the DSM task force will finalize its criteria, McPartland said.
The DSM V committee will not finalize its new diagnostic criteria until December. However, according to Lord, the results of the first two field trials they’ve run are in, and the committee is pleased with the results.