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New Health Code Would Strip Asperger’s of An Identity

February 12 2010 | by

There is an excellent opinion piece in the February 9 edition of The New York Times arguing against my position that Asperger’s syndrome, or AS, should be placed outside the autism spectrum. Here’s my take, based on my experience writing about autism and having a family member with the disorder.

Long considered a high-functioning form of autism, Asperger’s is characterized by having difficulty interacting socially, repeating behaviors, and delayed motor functioning. However, Asperger’s has until recently maintained a separate diagnosis from autism, a complex neuro-developmental disorder defined by impaired social interaction and other behaviors. Beginning with the publication of the Diagnostic and Statistical Manual of Mental Disorders (DSM V) in May 2013, the American Psychiatric Association (APA) has recommended a redrafted diagnosis to include both labels.

The new criteria require that the symptoms begin in early childhood, deficits be measured in social interaction and communication, and there are repetitive behaviors and fixated interests. The full criteria can be found here.

The opinion writer, Roy Richard Grinker, is a professor of anthropology at George Washington University and author of Unstrange Minds: Remapping the World of Autism, and he makes the compelling case that “the change is welcome, because careful study of people with Asperger’s has demonstrated that the diagnosis is misleading and invalid, and there are clear benefits to understanding autism as one condition that runs along a spectrum.” Namely, Grinker cites the fact that Asperger’s can dispel the myth that people with autism do not have intelligence and hidden abilities and that they can have careers and meaningful social relationships alike.

While it’s hard to argue with the hope that Asperger’s can serve to reduce the stigma around autism, I fear this is a naïve claim to make. Cultural discriminations between the connotations of Asperger’s and autism still exist. There is no line in the sand, especially when it comes to school districts, government agencies, and even mental health professionals.

Individuals as well must come to terms with a new way of framing their identity. The Asperger’s Association of New England, an organization with more than 3,000 members, wrote a letter to the APA committee explaining that Asperger’s should remain separate because individuals with Asperger’s “have found AS a term useful in understanding themselves, and in explaining themselves to their families and communities.” Even Michael John Carley, the director of the Global and Regional Asperger Syndrome Partnership, told NPR in an interview: “I personally am probably going to have a very hard time calling myself autistic.”

A full analysis from all viewpoints can be found at the online resource community for autism and Asperger’s, While the APA is taking public comment before adopting the revisions, I hope you will share your views, whatever they may be.

By Melissa Feldsher

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