Saturday, October 27, 2012

DSM5 Autism's Targeted Exclusion Of Intellectually Disabled Is NOT Based on Research Evidence

Dr. Catherine Lord has attempted to sell her DSM5 New Autism Spectrum Disorder in a comment at the Huffington Post by telling the ignorant, unwashed public that we have nothing to fear from the DSM5 Autism changes. Dr. Lord is trying to paint those who disagree with the DSM5 Autism Do-Over as irrational  thereby deflecting legitimate criticism which she and her DSM5 colleagues have not been able to credibly answer.  My criticism of the new DSM5 is two fold. 1. It expressly targets for exclusion the intellectually disabled who are also autistic and 2. It oversimplifies a complex disorder.  

I have commented for the past 2 1/2 years on the DSM5's  targeted exclusion of the intellectually disabled. The new definition excludes persons with profound intellectual disability from an autism diagnosis even if they display ALL of the diagnostic criteria.  This exclusion is derived from the convenience of researchers and clinicians who find the challenge of working with severely autistic, profoundly intellectually disabled persons too overwhelming.   Dr. Lord herself pointed out the tendency of autism researchers to exclude those with multiple disabilities and moderate and severe intellectual disability in  Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families:

""However, research in ASD has tended to use overwhelmingly White, middle to upper middle class samples, and has often excluded children with multiple disabilities and/or severe to profound intellectual disabilities". [underlining added - HLD]

Parents of children with severe autism and intellectual disabilities can not simply abandon our children. Unlike parents, autism researchers and DSM5 autism committee members do not have to find ways to work with the most challenged autism cases.  They simply exclude them by redefining them out of the spectrum.  They do so by ignoring the evidence of those diagnosed with autism and ID by existing criteria.

The express exclusion, "not accounted for by general developmental delays"  occurs in the introductory paragraph to mandatory criterion A of the DSM5 ASD definition:

"Autism Spectrum Disorder

Must meet criteria A, B, C, and D:

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:"

Lynn Waterhouse in her newly released book "Rethinking Autism" Variation and Complexity, pages 382-385, references this express exclusion and argues that the exclusion of those with intellectual disability is NOT evidence based.  She points out that the exclusion is based on a faulty, non evidence based assumption that a  person's intellectual or cognitive disability causes the social communication deficits. Waterhouse argues that the exclusion of the intellectually disabled IGNORES evidence of published, credible,  studies indicating that 55-70% of those diagnosed with autism by prior criteria experienced intellectual disability based developmental delays.  The exclusion also ignores  genetic, chromosomal and neuroscience studies showing substantial overlap between cognitive disability and social communication deficits. 

Dr. Lord confessed in the NYT Amy Harmon interview that the DSM5 team targeted intellectually disabled for exclusion from the new Autism Spectrum Disorder.  That targeted exclusion of the intellectually disabled is not evidence based. It is not helpful to understanding autism disorders generally and will cause harm to the most severely affected by autism, the ones who are, apparently, too much of a challenge for Lord and the DSM5 Autism Do-Over team. The exclusion of the intellectually disabled from the new autism disorder, while not evidence based, serves the interests of researchers, clinicians and services providers who lack the good conscience and the intestinal fortitude to work with the most severely affected by autism disorders: those with  general developmental delays, those with intellectual disability.

I don't know if the DSM5 Autism team has a motto. An accurate, honest one might be:

"DSM5, simplifying autism complexity by ignoring the evidence; helping those with autism disorders, except those who are too challenging and inconvenient."

1 comment:

Anonymous said...

The ASD diagnosis is a cash cow for professionals. Milking a quiet, cud chewing cow is preferable to wrestling with bulls (the "easy" population v. our kids) The APA, as a professional organization, exists to serve the interests of its members first - and "patients" come in second. It all comes dow to money, honey. I urge everyone to read a seminal article on medical marketing - how ADHD was created as a diagnosis: Peter Conrad’s “The discovery of hyperkinesis: Notes on the medicalization of deviant behavior” (October, 1975) Social Problems Vol. 23, pps. 12-21.