Four years ago, in Autism's Outcasts, I wrote about the exclusion from public consciousness,  and from autism research,  of those with autism and intellectual disabilities.  I am re-posting the research portion of Autism's Outcasts below. The comment overall talks about the media tendency, as demonstrated at that time by CBC and CNN, to exclude the harsher realities of severe autism, including those with associated with intellectual disability, from their generally feel good portrayals of autism disorders. At the time I was unaware that  the DSM5 autism "experts" would soon thereafter take steps to officially cast the intellectually disabled out of the Autism Spectrum Disorder by the express exclusionary language of the introductory paragraph of Mandatory Criterion A and that it would be based on the same autism research bias against the intellectually disabled that was known both to a humble autism dad like me and to DSM5 Neurodevelopmental Committe captain Dr. Catherine Lord who acknowledged that bias 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 express exclusion of the severe to profound intellectually disabled in the DSM5 Autism Spectrum Disorder is found in the introductory paragraph of Mandatory Criterion A:

Even if a person exhibits all the persistent deficits of Mandatory Criterion A, B, C and D that person will not receive an autism diagnosis if the Criterion A deficits can be explained by "general developmental delays" or intellectual disability. Unlike those who will not receive an autism disorder diagnosis because they do not exhibit all the mandatory criteria for a DSM5 ASD diagnosis those with severe intellectual deficits who meet all of the criteria will still be excluded on the basis of the faulty, non evidence based logic that, even though an intellectually disabled may exhibit all the mandatory criteria for the new ASD, including the 3 deficits listed under category A, it doesn't matter because .... they are severely intellectually disabled.  

No explanation for the exclusion has been provided that makes any sense.  I have read the public comments by Dr. Catherine Lord, I have attended IMFAR and asked Dr. Susan Swedo directly about this exclusion and no sensible explanation for casting out the intellectually disabled from the autism spectrum has been provided.  

The DSM5 generally, and the DSM5 Autism Spectrum Disorder specifically, have been explained on the basis that the changes introduced reflect current research.  With respect to autism however that explanation is not satisfactory.  It is not satisfactory because those with severe autism deficits, particularly those with profound intellectual disability have been excluded, merely for reasons of convenience, from much autism research,  as set out in the 2008 Autism's Ouctasts comment that follows:

"Autism Research - Exclusion of Lower Functioning Autistic Subjects

In The face of Autism research as reflected in the IMFAR looking glass, Research in Autism Spectrum Disorders 2 (2008) 385–394, authors James M. Bebko, Jessica H. Schroeder, Jonathan A. Weiss, Kerry Wells, Kristen McFee and Gayle M. Goldstein reviewed the abstracts from a major autism conference (IMFAR) from 2004 to 2006. They found an increase in the proportion of studies with preschool or infant participants. There was also a decrease in studies using lower functioning samples, and an increase in studies using Mixed samples. The use of control groups generally decreased, and the use of cognitively impaired comparison groups remained low:

Associated with this profile in the use of comparison groups in studies presented during this time period is an apparent decreasing representation of individuals with low or moderate intellectual impairments in the studies. One risk of such a trend is that our understanding of autism may become biased to the higher end of the functioning continuum. It is important that research continue to include individuals with cognitive impairments to ensure that our knowledge based on etiology, assessment, and intervention continues to expand across the entire range of expression of the disorder." [Bold highlighting added HLD]
The autism research bias in favor of the higher end of the functioning continuum and against the intellectually disabled at the lower end of the autism spectrum has been reflected in the recent research such as fMRI research which excludes severely autistic children from their studies because of the difficulties they present as subjects particularly the difficulty in ensuring compliance and limited motion during the use of the fMRI.  The researchers' solution? Just exclude and ignore the intellectually disabled, severely autistic from their studies and generalize to the entire spectrum while doing so.  The researchers are willing to make an unsubstantiated generalization to the entire spectrum because it is convenient to do so.  As a parent of a son with severe autism and profound developmental delays I do not have such a luxury when it comes time for anxiety inducing activities like haircuts, shaves and dental procedures.

The DSM5 authors claim that the New Autism Spectrum Disorder is based on current research.  It is no surprise then that the autism research bias against those with severe to profound intellectual disability is also reflected in the express exclusion of those who display all of the mandatory criteria of the New Autism Spectrum Disorder but also have the misfortune to be intellectually disabled.  Like the mainstream media, like the autism research community generally, the DSM Neurodevelopmental Committee authors of the New ASD  have, for no good reason, chosen to banish the severely intellectually disabled, Autism's Outcasts.

Shame on Dr. Catherine Lord and the DSM5 Neurodevelopmental Committee. I will think of their convenience based exclusion of the intellectually disabled from autism research and the DSM5 autism disorder as I help my son shave today. 

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:

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.

- Dr. Catherine Lord, as reported by NYT High Functioning Autism/Asperger's reporter, Amy Harmon, A Specialists’ Debate on Autism Has Many Worried Observers, New York Times, January 20, 2012

The above reference to, and quote of, Dr. Catherine's Lord about the DSM-5 committee's intent to exclude intellectually disabled from further autism diagnosis was important journalism by Amy Harmon even if it was simply an inadvertent by product of her exploration of HFA and Asperger's in the DSM-5's New Autism Spectrum Disorder.  Ms Harmon has shown considerable interest in HFA and Asperger`s while largely ignoring those severely affected by autism disorders.  To here credit her article about worried observers relates primarily to those high functioning groups but did cough up the above confession by Dr. Lord.  Ms Harmon consistent with her slant towards covering High Functioning Autism  then moved on and glossed over the admission by Dr. Lord.  In Amy Harmon World as in Dr. Catherine Lord`s DSM-5 the intellectually disabled just don`t count and will be excluded from the Brave New Autism Spectrum Disorder.

To my knowledge I am one of the first, and few, persons to comment on the intentional exclusion of the intellectually disabled from the autism spectrum in the DSM-5; despite their historical presence on the "spectrum"` as a vast majority of those with classic Autistic Disorder. One person who pursued my concerns was Lisa Jo Rudy, then of the About.com autism site, who obtained the following information from Dr. Bryan King of the APA's DSM-5's Neurodevelopmental Work Group:

"My Question for Dr. King


There seems to be a desire to remove people with "Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays" from the ASD category. Does this mean that a child with Mental Retardation (also called Intellectual Delays) no longer qualify for an Autism Spectrum diagnosis? Would that person wind up dually diagnosed with Intellectual Development Disorder and social communication disorder rather than with an ASD diagnosis?


His Response


There is no explicit desire , however, by creating more specificity we believe that people may be given diagnoses that better capture their individual conditions. The qualifier above about general developmental delays ensures that the social communication deficits are more specific, and also potentially allows for earlier diagnosis if appropriate.


Just as typically developing infants and toddlers are able to engage in very rich social communication and interaction across contexts, appropriate to their developmental level, so too most individuals with intellectual delays or disabilities are also able to communicate. On the other hand, significant deficits in social communication in toddlers may suggest the presence of autism. What the criterion above is meant to ensure is that clinicians take into account what is typical in terms of social communication abilities at a given age or developmental level, and not assume, for example, that a lack of social perception in a teenager with intellectual disability not automatically suggest the presence of autism. As is currently the case, some individuals with Down Syndrome may also meet criteria for autism; but most will not."

When I read Dr. King`s reply to Lisa`s question I was skeptical. I had difficulty rationalizing his answer with the express wording of mandatory criterion A of the DSM-5`s new Autism Spectrum Disorder which requires the presence of "persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays"

Dr. King stated that it was not the DSM-5 committees`s intent that children with mental retardation (now to be known as Intellectual Developmental Disorder) would be disqualified from receiving an Autism Spectrum Disorder diagnosis.  Dr. Catherine Lord`s appears to say exactly the opposite.  Dr. Catherine Lord takes issue with the Volkmar data base and study that has prompted the current fears over exclusion of persons with HFA and Asperger`s from a DSM-5 Autism Spectrum Disorder diagnosis.

Dr. Lord is undoubtedly correct and Amy Harmon and the New York Times need not worry.  The DSM-5 targets for exclusion from the new ASD diagnoses are not those with HFA and Asperger`s.  Those who will be excluded are the invisible autistics who are not featured in the NYT or in Hollywood movies.