For a change that's intended to clarify, proposed revisions to the official definition of autism may do the opposite. More than a year before a new definition is expected to appear in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders--the standard mental-health reference used by psychiatrists and insurers--a scientific catfight has erupted over the best way to recategorize the spectrum of symptoms that comprise autism disorders. Many experts say the proposed definition, which is still being assessed, will narrow the criteria for autism. The question is, How much?
The stakes are very high: everything from research funding, insurance mandates and education costs could be affected by the proposed change. For families with autistic children, access to expensive therapies and special support in schools depends on an autism diagnosis--which in turn depends on how the disorder is defined. "I think everyone is scared," says Catherine Lord, a member of the American Psychiatric Association (APA) committee that's overseeing the changes. "I've probably gotten 100 e-mails from people saying, What are you doing?"
The concern reflects the growing confusion over who might no longer be considered autistic: according to Fred Volkmar, a professor of child psychiatry at Yale University, as many as 76% of children currently diagnosed with Asperger's disorder--who typically have a normal or high IQ but are stymied by social interaction--and 84% of those with PDD-NOS (pervasive developmental disorder not otherwise specified) would no longer qualify. "People haven't clued in to this," says Volkmar, who predicts that the new definition could reverse the rising trend line of a diagnosis that now affects 1 in 110 children.
The APA committee, for its part, strongly disagrees. "I would be very surprised if anyone [lost] their diagnosis," says Lord, director of the Institute for Brain Development at New York--Presbyterian Hospital. "The intention is not to narrow the diagnostic criteria. The intention is to make the diagnostic criteria clearer." Indeed, many researchers are frustrated that diagnosing autism seems so consistently inconsistent. A 2009 study in Pediatrics found that 40% of children who had ever been diagnosed with autism no longer had it. Did they outgrow it? Had they been misdiagnosed?
The new definition aims to address the uncertainty, creating one central diagnosis--autism spectrum disorder (ASD)--out of many. Under the new guidelines, a high-functioning child with Asperger's could receive the same diagnosis as a nonverbal child who spends his days putting trucks and cars in uniform lines, but the diagnosis would be more descriptive. Instead of a diagnosis of Asperger's, the child may receive one of "ASD with strong language skills and high intelligence." Some children would see improved access to therapy, particularly in states like California where only those with standard autism diagnoses qualify for state services.