Proposed Changes to the Asperger's Diagnosis

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What’s in a name? That’s the question people are asking as the American Psychiatric Association (APA) considers revisions for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), which is due to be released in 2013. Also known as the bible of mental health disorders, the DSM helps mental health professionals classify the symptoms and conditions affecting their patients.

No More Asperger’s?

One of the revisions being considered for the DSM-V is categorizing Asperger’s syndrome (and another mild form of autism, pervasive developmental disorder not otherwise specified) under “autism spectrum disorders.” Asperger’s syndrome is currently a separate diagnosis in the DSM.

Once a little known disorder, Asperger’s has gained a great deal of awareness since 1994 when it became an official part of the medical dictionary, in part due to more accurate diagnosis and greater attention in popular culture.

Asperger’s syndrome is a mild form of autism that is characterized by social awkwardness, sensory differences, repetitive patterns of behavior and physical clumsiness. Children with Asperger’s are also blessed with better-than-average verbal skills, high intelligence and fixated interests that make them virtual masterminds on the narrow topics they enjoy.

Arguments Against the Proposed Change

The proposed change to the Asperger’s diagnosis is not without controversy. Those who oppose clustering Asperger’s with other autism spectrum disorders argue that people with Asperger’s see themselves as gifted, comparing themselves to icons like Thomas Jefferson and Albert Einstein, while autism has more of a stigma attached to it.

“This is their identity, which is really being taken away,” Dania Jekel, executive director of the non-profit Asperger’s Association of New England, said in an article on CNN. “If everybody’s sort of lumped together, we’re going to lose that.”

Other opponents argue that fewer services will be available if Asperger’s syndrome isn’t defined separately from autism because children with autism often have different needs than those with Asperger’s. In addition, they argue, the Asperger’s diagnosis is used by health insurers, researchers, state agencies and schools, and deleting it may lead to gaps in treatment.

Tony Attwood, a renowned psychologist and the author of The Complete Guide to Asperger’s Syndrome, expressed concern over the change, saying, “The general public has either a neutral or fairly positive view of the term Asperger’s syndrome.” But if Aspies are told to be evaluated for autism, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.”

Arguments in Favor of the Proposed Change

Proponents of the change have been equally vocal. They argue that describing Asperger’s syndrome as a form of autism is more scientifically accurate since research hasn’t reliably identified the biological markers for the various subtypes of autism.

According to Catherine Lord, director of the University of Michigan’s Autism and Communication Disorders Center, who is on the APA committee evaluating autism, one underlying reason for the change is that the term Asperger’s is vague. Her concern is that the more vague the diagnosis, the more difficult it may be to get children the assistance they need at schools that offer autism services but exclude those with Asperger’s.

“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Dr. Lord. “Asperger’s means a lot of different things to different people. It’s confusing and not terribly useful.”

Certainty in an Uncertain Time

One proposed change to the DSM that seems to have garnered widespread acceptance is an overall shift in approach to treating mental disorders. The new DSM will take a more holistic view of psychiatric patients, recognizing that people often suffer from a number of health problems affecting mind and body. For children with Asperger’s, this would mean greater attention to, diagnosis of and insurance coverage for common co-occurring disorders such as anxiety and attention disorders (such as ADHD).

In response to the arguments on both sides, the APA has introduced a website that allows the public to comment on the proposed changes. As the debate rages on, the autism and Asperger’s treatment communities, as well as individuals and families wait to see what will unfold in 2013.

Whatever materializes in the DSM-V, a label only means so much. If a child is suffering from social skill deficits and other issues typical of Asperger’s, there are programs that can help. Talisman Programs in North Carolina offers summer camps for children and teens with Asperger’s and ADHD, as well as Southeast Journeys, a school for teens with Asperger’s, where young people receive expert guidance and social skills training based on their individual needs, not a label.

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