New Autism Definitions: What's in a Name?

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Article first published as New Autism Definitions: What's in a Name? on Technorati.

Two boys with autism at the penguin exhibit at Sea World, both very different with the same diagnosis.Recently the American Psychiatric Association voted to redefine many of the definitions of various mental disorders in the Diagnostic and Statistical Manual of Mental Disorders. Among many of the controversial changes, Asperger's Syndrome has been removed as a diagnosis, and added to the over-reaching autism label. There has been a heated debate as to the over-reaching implications of this decision, including the possibility that many who qualified for services no longer qualify.

The decision was not an easy one, being the result of 7 years of discussion, research, and debate. And, as part of the scientific process, the committee that developed these definitions will monitor their impact. This is the fifth release of the Diagnostic and Statistical Manual (DSM), and in each release definitions have changed.

Now, this brings up some interesting discussions, none the least focus on the need for an actual label for a child who has autism. This might sound a little heretical, I have often wondered what good a separate label within the autism spectrum does for children or professionals. Isn't autism descriptive enough?

I say this with the following understanding:

  1. Autism spectrum disorders represent specific symptoms of varying degrees of severity. Someone with Asperger's can have the same basic symptoms as someone with Pervasive Developmental Disorder, or someone with full blown severe autism. They have been previously thought of as separate disorders as they were discovered, but as similarities bound them together within the autism spectrum, they became identified as separate points within the spectrum.
  2. No two children on the spectrum are the same. Even if they both are diagnosed with Asperger's, often their therapists and parents need to personalize their treatment to their specific needs.

So, I just don't see why it's so necessary to have a diagnosis beyond autism. At least with our experience, once our child has been diagnosed with autism, they qualified for special services. We therefore didn't pursue any additional definitions for our children. This saved money (autism as a diagnosis was not covered by our insurance in Utah), and didn't make that much difference in our children's lives.

Now, that being said, there is the concern that those children and adults that are so high in the Asperger's Syndrome spectrum that they no longer qualify as autism, and therefore would not get the benefit of therapy. Several parents are concerned about this, as they should, because therapy and services can mean the difference between a productive member of society and someone who is eventually placed on disability because they are unable to hold a job or function in society.

I'm not going to debate alternatives, responsibilities, and support avenues outside of formal services, because that is dependent on too many variables. But there is a concern on where the definition ends, where services end, and whether or not they should.

I don't envy those doctors that participated in that DSM committee, because of the level of responsibility that they took upon them in adjusting their definitions. In fact, there is a chance that the overall estimate of children with autism could adjust, throwing the argument of an epidemic into a spin. Still, for my children, labels just don't matter. They are children who happen to have varying levels of autism spectrum symptoms, and as such have the benefits of services to help them succeed. And for me, that's good enough.