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‏إظهار الرسائل ذات التسميات DSM-5 Autism Do-Over. إظهار كافة الرسائل
‏إظهار الرسائل ذات التسميات DSM-5 Autism Do-Over. إظهار كافة الرسائل

Autism Research Bias and the DSM-5 Autism Do-Over Exclusion of Those with Intellectual Disabilities


Why has the APA decided that the DSM-5 Autism Spectrum Disorder should eliminate or substantially reduce the numbers of persons with ASD who are intellectually disabled?   The removal from an ASD diagnosis of persons with ID will be accomplished by the express wording of Mandatory Criterion A of the DSM-5's New Autism Spectrum Disorder which requires "A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays.."  Where the numbers of persons with intellectual disability constitute the vast majority of persons with Autistic Disorder under the DSM-IV they will now be removed from the autism spectrum under the DSM-5 Autism Do-Over which will now define autism largely in terms of the current Asperger's definition of social communication and repetitive behavior deficits.  The DSM-5 Autism Spectrum Diosrder would be more accurately titled Aspergers Spectrum Disorder.  But why the substitution of Asperger's for Autism in the DSM-5 Autism Do-Over?

The answer may be found in the convenience of autism researchers, clinicians and pharmaceutical manufacturers.  It is easier to treat, and even research, high functioning autism and Aspergers than to deal with patients and subjects with classic, severe autism and intellectual disability.  Interviewed for an article in the Financial Times about the DSM-5's new autism spectrum diagnostic criteria Dr Craig Erickson, chief, Christian Sarkine Autism Treatment Center, Indiana University School of Medicine noted the presence of  a high functioning autism bias in autism research:

"The DSM-5 modifications will be great for drug development, as there will be greater standardization in clinical trials, said Dr Craig Erickson, chief, Christian Sarkine Autism Treatment Center, Indiana University School of Medicine. With hardened criteria, there will be better, clearer studies that are easier to interpret, he said. DSM-5 changes will be a positive for research as the improved diagnostic clarity would ensure proper enrollment criteria, Ring agreed.


Erickson noted that there is often a bias in clinical trials, where high-functioning patients are typically enrolled as they are more readily able to tolerate routine procedures such as blood tests part of clinical trials. Further, it is easier to make improvements in less-impaired children, Elliott said, noting the Phase II Kuvan in autism trial included children with IQs in the 50-60 range as well as Asberger patients.


To avoid a bias in developing treatments only for higher-functioning patients, it would be especially advantageous to target specific symptoms rather than a broad lump of ASD so that specific interventions can target symptoms for a particular severity, for example stereotypic motor movements, Elliott said."

I have commented several times about what I perceived as high functioning bias in autism research.  Dr. Erickson confirms my perception as Dr. Catherine Lord has done previously 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]

The APA has stated in its form letter reply to those who submitted concerns to them about the new Autism Spectrum Disorder criteria that the new definition is based on existing research:

"The
[DSM-5 Autism Spectrum Disorder] proposal is based on years of accumulated clinical, epidemiological, and neuroscience research which was thoroughly examined by the members of the DSM-5 work group on Neurodevelopmental Disorders."


A problem with that explanation  is that the research on which the DSM-5 autism spectrum disorder is based is biased in favor of high functioning autistic and Asperger's subject participation.  The existing research as admitted by Dr. Lord and Dr. Erickson tends to exclude the severely challenged, intellectually disabled population.  The new DSM-5 reflects that research bias by expressly excluding the intellectually disabled from a DSM-5 era Autism Spectrum Disorder diagnosis.

The DSM-5 Autism Do-Over will exclude the intellectually disabled to make life easier for autism researchers, clinicians and pharmaceutical manufacturers.  There is no compelling reason to expressly exclude the intellectually disabled from the ASD except for the convenience of these groups.

There is no legitimate research basis for removing the intellectually disabled from an autism spectrum disorder diagnosis.  There is only bias ... bias against the intellectually disabled. 

Intellectual Disability and the DSM-5 Autism Do-Over: Catherine Lord Then (2003) and Now (2013)


Catherine Lord, and her highly influential views about autism and intellectual disability seem to have changed a bit since the 2003 article published below and the DSM-5 Autism Do-Over which will be published in 2013.  For those who quibble over the reference to 2013 as being "now" they should know that Dr. Lord and the DSM-5 subcommittee have no intention of changing any of the wording of the DSM-5 Autism Do-Over which will take effect in 2013. For the intellectually disabled  the future is now, they are no longer part of the autism spectrum. 

As Dr. Lord has already confessed, the DSM-5 committee of which she is a member has already targeted the intellectually disabled for exclusion  from the DSM-5's New Autism Spectrum Disorder. That confession is also confirmed by the exclusion language in mandatory criterion A of the DSM-5 which excludes an autism diagnosis where the social communication deficits are accounted for by general developmental delay. The writing is on the DSM-5's purple wall.

If there is any change at all in the wording of the DSM-5 Autism Do-Over it will be at the higher functioning end and will favor inclusion of more persons who are least affected by an "autism" disorder.  Persons with high functioning autism and Aspergers have powerful allies in the major mainstream media institutions; allies like Amy Harmon of the New York Times.  For the MSM and Hollywood autism is Aspergers. 

The intellectually disabled who comprise the vast majority of those with DSM-IV Autistic Disorder are never mentioned in those highly influential circles and the recent firestorm over exclusion from the DSM-5. The uproar is over the possible exclusion of the highest functioning persons with an ASD, persons who can work in rock bands, run successful businesses, graduate from university, cavort with New York media and New Jersey and Washington political figures and committees.

Dr. Catherine Lord and her DSM-5 committee will continue with their plans to separate intellectual disability completely from the autism spectrum as though there were no connection between the two.  But Dr. Lord did not always see the intellectually disabled as a lower caste to be excluded from the autism spectrum rooming house as illustrated in this 2003 journal article abstract:

Evidence for Latent Classes of IQ in Young Children With Autism Spectrum Disorder


Jeffrey Munson, Geraldine Dawson, Lindsey Sterling, Theodore Beauchaine, Andrew Zhou, Elizabeth Koehler, Catherine Lord, Sally Rogers, Marian Sigmand, Annette Estese, and Robert Abbotte

Autism is currently viewed as a spectrum condition that includes strikingly different severity levels; IQ is consistently described as one of the primary aspects of the heterogeneity in autism. To investigate the possibility of more than one distinct subtype of autism based on IQ, both latent class analysis and taxometrics methods were used to classify Mullen IQs in a sample of 456 children with autism spectrum disorder. We found evidence for multiple IQ-based subgroups using both methods. Groups differed in level of intellectual functioning and patterns of verbal versus nonverbal ability. Results support the notion of distinct subtypes of autism that differ in severity of intellectual ability, patterns of cognitive strengths and weaknesses, and severity of autism symptoms.


In 2003 Dr. Catherine Lord (and Dr. Geraldine Dawson of Autism Speaks) saw the intellectual ability patterns as a significant basis for distinguishing subtypes of autism that differ in severity.  Apparently her views have changed ... dramatically ... since then.  To the great detriment of the vast majority of those with Autistic Disorder and intellectual disabilities.

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