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Sunday, February 12, 2012

Local Response to the DSM-5 Controversy

At the last ASNCOC coffee meeting, there was a discussion about the proposed changes to the definition of autism in the upcoming DSM-5, which is due to be released in May 2013. The DSM is the manual that sets forth the diagnostic criteria for autism, and there is a great deal of concern that the proposed revisions will exclude a lot of people on the autism spectrum, particularly those who currently have a diagnosis of Asperger's Disorder or HFA. Exclusion from diagnosis equals exclusion from vital services and interventions, in schools, the community, and in the medical field (especially if North Carolina's autism insurance bill is passed).

In addition, self advocates with Asperger's have expressed a lot of dismay at having Asperger's lumped under a general category of ASD. For many, being an "Aspie" provides a sense of self-awareness and community. There is also a feeling that the public at large has at least a basic grasp of what it means to have Asperger's (as opposed to the far more nebulous PDD-NOS), and is worth retaining for that reason.

For those who have not been following the DSM-5 controversy, the changes to autism in DSM-5 will take social and communication, which were previously two categories, and blend them into one. In addition, it will be adding characteristics to the repetitive behaviors category, which will now include sensory issues. The age of speech acquisition will no longer be in the diagnostic criteria. Autistic Disorder, Asperger's Disorder, PDD-NOS, and Childhood Disintegrative Disorder will no longer be separate sub-sets; they will all now be called Autism Spectrum Disorder. A Scientific American article cited several studies that found that the overall design of the new diagnostic criteria are sound, but that they are overly narrow. In particular, studies suggested that if the criteria under category A (social / communication) were changed to require 2 out of 3 symptoms be present, rather than all 3 out of 3, it would reduce the problem of excluding higher functioning people with autism from diagnosis. Personally, I think that seems like a sensible solution, and one that I hope the APA will consider.

As for the local response to the DSM-5, you can read reactions from the Autism Society of North Carolina and TEACCH. They express a commitment to continuing to serve all people affected by autism, and a more calm and measured tone than much of what we have read about DSM-5 (unlike the NY Times article that caused alarm to ripple across the ASD community). Hopefully by the time DSM-5 is finally released in May 2013, the APA will have taken steps to address concerns that countless individuals with ASD could be excluded from the interventions that can help prepare them for independent and meaningful lives.

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