Saturday, February 20, 2010

What to Call It - Asperger's, or Autistic Disorder?

I have to say I have mixed feelings about the recent proposal by the American Psychiatric Association (APA) to "change" the diagnosis of Asperger's Disorder to Autistic Disorder (Autism Spectrum Disorder). Yes, I understand the rationale of subsuming Asperger's into the existing Autistic Disorder category, at least purely in terms of diagnostic categorization for professionals. However, it's a different story when I think about parents and the average layperson.

What do most, and I mean most, people think of when they hear "Asperger's"? They usually don't know quite what to think! Or, they're too confused to know how to describe it. At least until they hear more about what Asperger's really is and is not. And even with more information most adults I've encountered still need a lot of time to "get" what it is.

Now, what do most people think of when they hear "Autism"? Severe. Rain Man. Barely functioning. But, those perceptions and descriptors really in no way apply to most who have Asperger's. In fact, Asperger's symptoms can be so mild as to be almost imperceptible to the average person. They can also be very noticeable, depending on the situation and setting and individual. But, Asperger's does not usually look at all like how most adults think of Autism.

The point is that I am concerned that way too many parents will hear the diagnosis of "Autistic Disorder" or "Autism Spectrum Disorder" and jump to one of two inaccurate conclusions. For one, many will drop into even more intense denial than is already common because their child is now being called autistic, when their child may "look" nothing like they understand autism to be. And, related to that, many parents whose children would have previously been diagnosed with Asperger's may now proclaim the whole diagnostic process, and outcome, to be bogus and useless because the evaluators are calling their child something that seems in no way true!

I'm so concerned about this because it can already be very difficult to help parents really understand what Asperger's is and, therefore, help them help their children in appropriate ways. And I understand why. But, at least being able to talk about the diagnosis as "not Autism per se" can help make headway and get where we need to be and work together. So, please, APA - take this reality into account before making the change.

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