Revisions to Autism Definition May Leave High-Functioning Patients Out

Two recently completed studies showing that a revamp of the autism definition would not exclude patients who require treatment has the American Psychiatric Association (APA) advancing towards changing the diagnosis for autism. Many experts still fear, however, that the new definition will make it more difficult for patients who would no longer meet the autism criteria to receive health, educational, and social services.

The current definition allows an individual to meet the diagnosis of autistic by displaying six or more of 12 autistic-related behaviors, but the new definition would require the individual to exhibit three social interaction and communication problems and at least two repetitive behaviors.

These new guidelines are meant to clarify the diagnostic criteria of autism spectrum disorder. The several defining terms of the condition (such as “autism,” “Asperger syndrome,” and “childhood disintegrative disorder”) have overlapping characteristics, which can make it difficult for clinicians to differentiate between the conditions. The change in criteria would merge all diagnoses under one category, autism spectrum disorder, and eradicate Asperger syndrome from the manual.

“The new criteria are somewhat stricter,” said Geraldine Dawson, chief science officer of Autism Speaks, reported Bloomsberg Businessweek. “There are a group of people who previously had Asperger Syndrome or high-functioning autism who are now no longer meeting the criteria.”

“Our fear is that we are going to take a big step backward,” said Lori Shery, president of the Asperger Syndrome Education Network. “If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”

The new definition is currently being assessed by a panel of experts appointed by the APA as they work on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM). This revision will be the first major one in 17 years and it is expected to be published in May 2012. Should the new autism definition be approved, it will be published in the new edition.

According to Bloomsberg Businessweek, Darrel Regier, the APA’s director of research, said the two studies the APA is considering in its assessment of the new criteria involved roughly 600 people with numerous, strongly related conditions. The exact results of the trials—which were completed over the last year at Baystate Medical Center in Springfield, MA, and Stanford University in Palo Alto, CA—were not provided because the findings have not yet been presented to the public or published in a medical journal. Regier did say, however, that one of the studies showed an increase in diagnosis rates by 1% under the new criteria, but the other study showed a decrease of 4% to 5%.

Regier, who is also vice chairman of the task force weighing the new guidelines, said that it is not likely the new guidelines will leave autistic patients who previously received treatment behind. Yet, the findings of a Yale School of Medicine study disagree with Regier’s statement.

Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine, and fellow researchers collected and analyzed data from a 1993 trial conducted when the last diagnostic manual was released. Of the 372 high functioning autistic children and adults Volkmar and his colleagues studied, only 45% would meet the proposed criteria for autism spectrum now being assessed.

Volkmar reported the study’s findings yesterday at a meeting of the Icelandic Medical Association and plans to publish a broader analysis, based on a larger and more representative sample of 1,000 cases, later this year.