DSM5 Autism Day At IMFAR 2012: Swedo Confirms Some Intellectually Disabled Will Be Excluded from DSM5 Autism Spectrum Disorder

Today was DSM5 Autism Do-Over Day at IMFAR 2012.  Dr. Susan Swedo, head of the DSM5 committee that drafted the DSM5 Autism Spectrum Disorder, spoke twice today, once at a stakeholder's luncheon  and afterwards  at an oral presentation in the Grand Ballroom.  Dr. Swedo replied to my questions after the second presentation and indicated that the DSM5 Autism Spectrum Disorder will exclude some, though not all, intellectually disabled from an ASD diagnosis.

I attended both events but did not have an opportunity to question Dr. Swedo during the luncheon as the event was simply running out of time. During the luncheon presentation she was very emotional in discussing the media criticisms of the DSM5  Autism Spectrum Disorder. At one time she accused some in the media of telling lies about the motivation behind the new DSM5.  It was not done, as alleged by some, to cut back the autism epidemic and save costs for insurers.  It was done because the DSM5, according to Dr. Swedo, reflected experience with autism disorders and careful study. It was done to improve specificity in diagnosing autism not to eliminate some.  Having heard her speak with great emotion and conviction I don't question Dr. Swedo's sincerity, her compassion or the motivation behind the redefined DSM5 autism definition.  I do disagree with the specific targeting of intellectually disabled for exclusion from the DSM5.

Dr. Swedo delivered an expanded version of her presentation in a late afternoon session.  Her remarks began, as they did at the luncheon, with a vigorous attack on the media for their DSM5 coverage and misrepresentations about exclusion of high functioning persons with autism and the motives which prompted the new definition. Dr. Swedo said nothing about the exclusion of intellectually disabled until I asked voiced my concerns during the question period about the exclusion of intellectually disabled from the DSM5 definition by operation of the "not accounted for by general developmental delays" exclusionary clause in Mandatory Criterion A of the DSM5's new ASD.  Dr. Swedo indicated that the exclusionary phrase would result in exclusion of some but not all intellectually disabled from a DSM5 Autism Spectrum Disorder.  

Dr. Swedo's comments confirm that the expansion of autism in recent editions will culminate with HFA/Aspergers as the new Autism.   Many of the vast majority of persons with autism and intellectual disability that existed prior to the DSM-IV are now being kicked to the curb; removed from the autism spectrum. 

Read more »

Severity Levels in the DSM-5's New Autism Spectrum Disorder: Requiring Support, Substantial Support and Very Substantial Support

The DSM-5 will merge the disorders now commonly referred to  as Autism Spectrum Disorders into one diagnosis of Autism Spectrum Disorder and will divide that spectrum by severity levels.  The severity levels are Level 1 - Requiring Support, Level 2 - Requiring Substantial Support, and Level 3 - Requiring Very Substantial Support.  Intellectual Disability, as expected,  is not mentioned in this classification scheme even though it is obvious that Intellectual Disability will be common amongst persons with Level 3 Autism Spectrum Disorder and non-existent in the Level 1 ASD where most persons currently diagnosed with Aspergers will be reclassified.

I believe that the failure to acknowledge fully the relationship between Intellectual Disability and Autism Disorders is a form of Intellectual Dishonesty. As long as we continue to ignore the ID Pink Elephant in the Autism Spectrum we will never conduct the research necessary to fully understand autism disorders.  The Intellectual Dishonesty of omitting express reference to Intellectual Disability aside though, the division of the New Autism Spectrum Disorder into severity levels based on the levels of support required to function should at least help remove some of the romantic veneer with which autism disorders have been coated by various Neurodiversity and purported autism self advocates over the last two decades.  There is no reason to take joy in discovering that you, or your child, have an impaired functioning level requiring support, substantial support or very substantial support.  It is hard to glorify autism disorders in those terms.  

Despite my misgivings about  the New Autism Spectrum Disorder, I have to acknowledge that  the New ASD may at least be a  start toward a more realistic approach to public discussion of autism disorders. It is hard to tell at this time though whether it will be a substantial start or a very substantial start towards a reality based approach to autism disorders.

Read more »