The Asperger Diagnosis Challenge

February 17, 2010

By Dan Coulter

Being diagnosed with Asperger Syndrome in 1997 was one of the best things that ever happened to my son, Drew. Make no mistake, Asperger Syndrome can be duplicitous. It can give you abilities that make people shake their heads in wonder, and deficits that just make them shake their heads.

In elementary school, Drew wowed his teacher and classmates with an encyclopedic knowledge of Greek mythology, but then annoyed them with a compulsion to talk incessantly about Perseus and friends.

The Asperger diagnosis was a good thing, because it helped my wife, Julie, and I understand the reason for Drew’s behaviors -- and get him the support he needed to enhance his strengths and work to compensate for his challenges. Drew is now 26 years old. He has two college degrees, holds two part-time jobs and lives on his own.

Now the American Psychiatric Association (APA) is considering removing the Asperger diagnosis, formally called “Asperger’s Disorder,” from its diagnostic and statistical manual, and folding it into the broader diagnosis of “Autism Spectrum Disorder.” The rationale for eliminating the diagnosis is, basically, that it’s not clinically distinct enough. But I think there are strong arguments for keeping the diagnosis. Some of them have been made in New York Times articles by experts such as Dr. Tony Attwood, Dr. Temple Grandin, and Dr. Simon Baron-Cohen.

I’d like to offer a few thoughts of my own. For one thing, removing the diagnosis would have an impact far beyond how a health professional treats a patient. The diagnosis can help determine whether or not individuals receive services -- and whether they receive the right services. For example, a broad diagnosis can encourage a school district to use a blanket approach for autistic children at very different levels of development. More specific diagnostic categories can help ensure we give each child the support he or she needs, such as intense social skills training, or speech therapy, or accommodations in a classroom.

And then there’s the acceptance issue. We’ve reached the point where society is becoming increasingly aware of Asperger Syndrome. That awareness has helped people explain their condition to families, friends and employers – and gain an acceptance many have yearned for all their lives. Before my wife and I went into business creating educational videos about Asperger Syndrome and autism, I worked in broadcasting and corporate public relations for more than 30 years. I know how hard it is to establish a brand and associate attributes to it. I’d hate to give up the progress we’ve made using the Asperger “brand.” I’d love to see other brands created that could help educate people about other forms of autism.

If you’ve read my past articles, you may know about a DVD Julie and I produced about people with Asperger Syndrome who are successfully holding jobs. Being able to disclose “Asperger Syndrome” and use it to dispel misleading autism stereotypes was an important factor in helping these employees be accepted and respected by supervisors and coworkers.

In one of my corporate jobs, I worked as a media relations director for Bell Labs. There I learned the value of working with scientists to make compromises in crafting language to describe complicated technical concepts. There is great power in using terms that an average person can understand. From my perspective, the investment the autism community has made in helping people understand Asperger Syndrome is worth building on. We’ve gotten even more momentum from motion pictures like “Adam” and the HBO biopic about Temple Grandin. Perhaps the diagnosis could even be expanded to incorporate more of the attributes of high functioning autism. This could preserve the Asperger Syndrome diagnosis and eliminate the overlap with an “autism spectrum disorder” diagnosis.

My high school friend and college roommate, Bill, became a family practice doctor and stayed in my hometown as I made numerous corporate moves. Bill is the kind of doctor everyone wants. He informs his technical decisions about care by asking his patients questions that will help him determine how different options will affect their quality of life. I think considering how keeping the Asperger diagnosis will positively affect people’s lives will produce a powerful argument for its continued use. I’ve shared my thoughts with the American Psychiatric Association, which I’m confident is making a sincere effort to do what’s best for people across the autism spectrum.

If you’d like to share your perspective with the APA, you can read about the proposed diagnostic changes and offer input through this website:www.dsm5.org.

You’ll need to register on the site first, but registering is free.

After you register and log on, you can find the Asperger section of the proposed diagnostic changes by selecting the category: “Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence.” Then select the sub-category: “299.80 Asperger’s Disorder.” Click on the “Rationale” tab to read the rationale for the proposed change; then click on the “Proposed Revision” tab to access a box to provide your comments.

However you feel about this issue, letting the APA know where you stand will help the organization make a decision informed by the people it will affect most.

Let’s make sure they hear us.

ABOUT THE AUTHOR -- Dan Coulter is the producer of ten DVDs about Asperger Syndrome and autism, including the new employment guide video "Asperger Syndrome at Work.” You can find more articles on his website: coultervideo.com.

Copyright 2010 Dan Coulter    All Rights Reserved.    Used by Permission.

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