DSM-5: Buh bye, Asperger’s?

One of the more controversial proposed changes in the DSM-V concerns eliminating Asperger’s Disorder as its own diagnosis. The rationale for the proposal is provided on the DSM-5 site, here. The proposal has met with a lot of opposition from those who call themselves "Aspies" proudly and feel that the proposal would take away their identity, reduce the likelihood of people seeking diagnosis due to the stigma of the label "autistic," make it harder for students to get necessary services in school, and overall, be a step backwards. Elizabeth Landau of CNN described some of the opposition here, and it has been discussed all over the Internet. But not everyone objects to the proposal. In an op-ed, Disorder Out of Chaos, Roy Richard Grinker writes about the issue and his daughter:

The proposed new diagnostic criteria, by describing severity and functioning along a single continuum, would also capture the often unpredictable changes among children with autism. When Isabel was 3, she had all the symptoms of autistic disorder, but if she walked into a doctor’s office today as a new patient — a chatty, quirky high school senior — she would more likely be given a diagnosis of Asperger’s disorder. Narrow diagnostic categories do not help us understand the way a person will develop over time. We no longer need Asperger’s disorder to reduce stigma. And my daughter does not need the term Asperger’s to bolster her self-esteem. Just last week, she introduced herself to a new teacher in her high school health class. “My name is Isabel,” she said, “and my strength is that I have autism.”

As a researcher by training, I respect the work the DSM-V work group has done on this issue and its position that if we cannot demonstrate a reliable and valid difference between Asperger’s and Autistic Disorder, then we should not have a separate diagnosis. I also, however, appreciate the concerns of those who feel that after finally having a label that they have embraced, they do not want it taken from them. Of equal concern to me is what will happen to students under I.D.E.A. In New York State, for example, a student who is classified under the educational classification of "Autism" must be given certain services, services that may or may not be necessary and appropriate for some students who are currently diagnosed as Asperger’s. Will districts be less inclined to classify students for fear that it will cost them more economically in special education funds, or will they classify students who are diagnosed as having Autistic Disorder as "Other Health Impaired" for educational classification purposes? I think we may be in for some confusing times ahead if the proposal is approved. I’m not saying that it shouldn’t be, just that there may be more educational consequences than we have as yet considered.