What Happened to Asperger's?

Recognized since 1944 as a form of high-functioning autism, Asperger's Syndrome disappeared from the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 2013. Why?

child playing alone
Photo: Greg Schiedemann

Flat vocal patterns. Lack of eye contact. Anxiety over any small change in routine. A child who spends recess walking in circles, talking to herself about dinosaurs. A teenager who has difficulty with basic reciprocal conversation skills, but an uncanny ability to memorize train schedules or narrate all of the Godfather movies. In 1994, the American Psychiatric Association (APA) decided that this kind of diverse array of symptoms added up to a diagnosis called Asperger's Disorder (also known as Asperger's Syndrome) and added it to the 4th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM). Asperger's quickly became synonymous with a kind of high-functioning autism in which children struggled with social skills, anxiety, and repetitive or restrictive behaviors but also tended to display impressive cognitive and verbal abilities. Estimates of prevalence vary widely, but as many as 97 children out of 10,000 were diagnosed with the disorder over the subsequent 10 years.

In May 2013, the APA published the 5th edition of the DSM--and Asperger's Syndrome disappeared.

While it was previously considered a stand-alone diagnosis (separate from autism itself or another kind of autism previously known as "pervasive developmental disorder not otherwise specified," or PDD-NOS) Asperger's Syndrome now falls under the umbrella term Autism Spectrum Disorder (ASD), in which patients could be grouped along a continuum from mild to severe. "I like the term because a spectrum sounds so inclusive," says Parents advisor Fred Volkmar, M.D., director of the Child Study Center at Yale University School of Medicine and editor-in-chief of the Journal of Autism & Developmental Disorders. "The problem is that it's a misnomer. The diagnostic criteria to put a patient on the spectrum has become more restrictive, so a fair chunk of people who would have been diagnosed before the change now don't make the cut." That's troubling because without a clear diagnosis, it can be much more difficult for these children to receive behavioral therapy and other services they need. The good--if bizarre--news is that people who were diagnosed before 2013 have been grandfathered in by the APA and can keep their diagnosis. But Dr. Volkmar estimates that as many as 75 percent of children who would have qualified for an Asperger's or PDD-NOS diagnosis in the past now wouldn't be diagnosed with ASD.

The DSM-5 does contain a new diagnosis, known as Social Communication Disorder, which may include some of the children who no longer qualify as ASD. "This diagnosis may even capture some children who weren't getting diagnosed before," says Michael Rosenthal, Ph.D., a pediatric neuropsychologist who specializes in autism at the Child Mind Institute in New York City. Dr. Rosenthal notes that the APA created the new system of diagnoses in response to problems with the old model: "When they looked at a number of major academic medical centers across the country, they found that there was no consistency in terms of the criteria being used to make diagnoses," he explains. "Individual doctors and centers had their own systems for classifying kids, but there wasn't enough continuity." Still, he acknowledges that some children, especially those with milder symptoms, may not be covered by the new criteria. "This is a big concern for those families."

Dr. Volkmar maintains that the new criteria are just too restrictive: "The way the original definition worked, clinicians had 2,688 possible combinations of diagnostic criteria that would result in a diagnosis," he explains. "Under the new definition, they have six. That may disenfranchise people from the services they need and that's a real worry."

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