Opinion Conversations on the science of autism research.

Service impact

by  /  29 June 2012

One persistent concern is how the changes might affect access to services for people with the disorder. For example, critics of the DSM-5 say they worry the new criteria will push some people off the spectrum, making it more difficult for them to gain access to special-education services and other support.

The Autistic Self Advocacy Network (ASAN), a national community organization run for and by adults on the autism spectrum, released a report in early June on how the new criteria will influence eligibility for special education, Social Security and other programs.

The verdict: Although there are some areas for concern, the changes are mostly good.

For example, some states specifically exclude people with Asperger syndrome or PDD-NOS from mandated services, a distinction that can no longer be made under the DSM-5. So these people may benefit from the changes.

However, the report also suggests that if some people, particularly those diagnosed as having PDD-NOS, do not meet diagnostic criteria for autism, they will lose their access to services. 

Under the DSM-5, people who have trouble with social communication but don’t meet the full diagnostic criteria for autism would be diagnosed with social communication disorder. The precise definition of this alternative diagnosis is not yet clear, nor is it apparent how those who mediate access to services, such as state governments and schools, will interpret it.

One possibility ASAN proposes is to include social communication disorder within autism, calling it ASD–Social Communication subtype or something similar. That way, laws that explicitly mention autism would still apply to this group.

If indeed a significant number of people diagnosed with PDD-NOS move to a diagnosis of social communication disorder, are they impaired enough to require legally mandated services? That’s a question that should be answerable empirically.

At least one clinician who works with this group says the answer is yes. “In our experience, people with a PDD-NOS diagnosis often miss out on a full diagnosis due to a lack of restrictive and repetitive behaviors,” William Mandy, lecturer in clinical health psychology at University College London, told me at the conference in May. “But I think a lot of them have profound communication difficulties on a level with autism.”

2 responses to “Service impact”

  1. Steven Kapp says:

    As the co-author of the Autistic Self Advocacy Network’s DSM-5 policy brief on potential services implications, I appreciate SFARI’s coverage. ASAN also released a second brief heavily supported by the empirical research literature with more a more comprehensive summary of our positions and recommendations. For example, nuances of social context and compensation raise concern about the diagnostic sensitivity of the proposed criteria, which have the risk of exacerbating the underdiagnosis of adults, women and girls, and racial and ethnic minorities. Both briefs can be found at this link: http://autisticadvocacy.org/2012/06/asan-public-comment-on-dsm-5-asd-criteria/

  2. RAJensen says:

    Steven Kapp makes no sense at all. His view is contrary to what the DSM5 working group is trying to accomplish. As was pointed out by Allen Frances the editor of DSM-IV (1994) the field trials of DSM-IV failed to predict the false epidemics of autism, attentional disorders and bi-polar disorders. Autism is not being underdiagnosed it is being overdiagnosed according to many. If Kapp wants to feel better he might recommend that the new diagostic category of social-communication disorder be given the feel good label of Asperger Syndrome as long as Asperger Syndrome is correctly moved out of the Autism Spectrum Category where it never should have been in the first place.

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