Waterhouse & Gillberg: Why Autism Must be Taken Apart

The belief that there is a single defining autism spectrum disorder brain dysfunction must be relinquished. - Waterhouse and Gillberg, Why Autism Must Be Taken Apart

I am not going to offer too much comment on the article by Lynn Waterhouse and Christopher Gillberg itself  which, as the title indicates, argues that autism must be taken apart, at least for research purposes.  I have not yet purchased or read the article. The abstract speaks very clearly and even I, as an ignorant, hysterical, misguided parent of a son WITH severe autism disorder, intellectual disability and epileptic seizures can understand. Waterhouse and Gillberg address themselves to the important needs of studying individual variation and finding specific treatments which are difficult to achieve in the artificially combined "autism spectrum disorder". 

The authors' views are important in and of themselves as autism experts.  They are also important because parents concerns on such subjects as the characterization, the artificial, non evidence based,  unification of autism disorder(s) are automatically dismissed.  The lumping of Aspergers in with autistic disorder under the pervasive developmental category of the DSM-IV created a whole new generation of extremely high functioning, adult diagnosed"autistics" and "free ranging Aspies" who declared that THEY speak for all persons with autism. Michelle Dawson even appeared as an "autistic" before the Supreme Court of Canada in the Auton Case to oppose government funded early ABA intervention for autistic children ... other people's autistic children. 

My son can not speak for himself.  As his father I speak for him and I know him best in doing so.   As a parent I reject absolutely the right, or the knowledge base, of Michelle Dawon, JE Robison, Ari Ne'eman or anyone else to speak on behalf of my son.  To those parents who think that the insights of some high functioning autism celebrities can offer assistance to their children I hope that, in their cases, they are right and I wish them well.   

Personally I hope that the autism research community follows the direction offered by Waterhouse, Gillberg, Insel who wrote about autisms and the lack of validity of the DSM generally, and Giacomo Vivanti who has commented on the need for researchers to look beyond the "pure autism" model of autism research.  Autism heterogeneity ... it is obvious to those who live in the real world of autism disorders ... it should be obvious and should be embraced by the autism research community.

Journal of Autism and Developmental Disorders

January 2014

Why Autism Must be Taken Apart

• Lynn Waterhouse, 
• Christopher Gillberg

Abstract

Although accumulated evidence has demonstrated that autism is found with many varied brain dysfunctions, researchers have tried to find a single brain dysfunction that would provide neurobiological validity for autism. However, unitary models of autism brain dysfunction have not adequately addressed conflicting evidence, and efforts to find a single unifying brain dysfunction have led the field away from research to explore individual variation and micro-subgroups. Autism must be taken apart in order to find neurobiological treatment targets. Three research changes are needed. The belief that there is a single defining autism spectrum disorder brain dysfunction must be relinquished. The noise caused by the thorny brain-symptom inference problem must be reduced. Researchers must explore individual variation in brain measures within autism.

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SFARI Continues Misrepresenting High Functioning Autism Only Research As "Autism" Research

The Simon Foundation Autism Research Initiative, SFARI, continues to represent studies involving only high functioning autistic participants to the public as "autism" studies.  In the Children with autism have trouble recalling memories article posted January 3, 2014 SFARI reports as an "autism" study a study which excluded as participants the 50% of those with an Autism Spectrum Disorder who also have an intell5ectual disability (World Health Organization estimate, September 2013):

"Children with autism have trouble recalling memories

Laura Geggel

3 January 2014

Children with autism struggle to remember details of events from their own lives, reports a study published 27 November in Development and Psychopathology. .... The researchers looked at 63 children with autism who have intelligence quotients of 70 or higher, and 63 controls, all aged 8 to 16."

The SFARI article/opinion piece makes no mention of the large numbers of persons with autism SPECTRUM disorder who also have an intellectual disability.  It did not caution members of the public that the study results may apply only to the higher functioning 50% of persons with autism disorder.  It is repeating the misrepresentation of high functioning autism only research as "autism" research as it did just just over a week ago in the article Autism brains are overly connected, studies find. 

Dr. Catherine Lord stated several years ago that autism research was marked by an under representation of subjects with intellectual disabilities:

"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]

Autism research has continued to exclude persons with severe to profound intellectual disabilities, a practice questioned by Giacomo Vivanti and his colleagues in a recent article. It is now also widely recognized, at least outside of SFARI organization circles, that "autism" is very heterogeneous in nature. 

Intellectual disability is one of the  most numerically significant and important elements in the heterogeneous autism spectrum. Maybe someone could send a memo to the SFARI commentators. 

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Intellectual Dishonesty: Autism Disorders Misrepresentation Via High Functioning Autism Only Research

In the picture above SFARI presents news of two "autism" studies which purport to find that brains of persons with "autism" are overly connected as compared to those in control groups. In fact both studies intentionally and expressly excluded persons with autism and intellectual disability, approximately 50% of those with autism spectrum disorders according to the World Health Organization, from their studies. Both the studies and the SFARI news commentary describe the results as descriptive of "autism" brains rather than "high functioning autism" brains.  The studies, and the SFARI news commentary, continue the misrepresentation of high functioning autism as being representative of  all autism disorders.

In a 2008 posting on this site, Autism's Outcasts, I commented on and questioned the exclusion of low functioning autistics, those with intellectual disabilities, from media representations of autism disorders and from "autism" research. Unfortunately, these trends have continued unabated.  While the mainstream media is driven in this direction by both ignorance and profit generating high functioning representations of autism in shows such as the Big Bang Theory it is frightening to see researchers, and autism research organizations like SFARI, cling routinely to the premise that "autism research" should focus on high functioning autism exclusive of intellectual disability, pure autism,  as questioned by Giacomo Vivanti and his colleagues in Intellectual Development in Autism Spectrum Disorders: New Insights from Longitudinal Studies:

"we argue that the practice of excluding children with ID in ASD research to study “pure autism unconfounded by ID” is ill considered, just as studying the risk of cardiovascular events in individuals who are slightly overweight, or who have mild presentation of hypertension, would not be informative on the most relevant aspects affecting the outcomes of individuals with those conditions."

In the SFARI article linked above,  Autism brains are overly connected, studies find, Emily Anthes refers to two recent autism studies which she argues support the belief in the article title that "autism brains" are overly connected:

"Two of the new studies looked at resting brains and controlled for head movement. Both found that the brains of children and teens with autism show overconnectivity. In the first, published 14 November in Cell Reports, Müller and his colleagues used resting-state functional magnetic resonance imaging (fMRI) to assess short-range brain connectivity in 29 high-functioning children and adolescents with autism and 29 controls. All participants were between the ages of 8 and 18, with intelligence quotients (IQs) above 70. .......... A second study, published in the same issue of Cell Reports, turned up even more extensive evidence of overconnectivity in young children, who are typically neglected in connectivity research2. The researchers assembled three independent groups of children: 40 in California, 40 in Washington, D.C. and 30 in New York, all between the ages of 7 and 13. Each group had equal numbers of children with autism — all with IQs above 70 — and typically developing controls.”

These two studies are presented by the SFARI commentary as representative of autism generally even though persons with autism and intellectual disability were intentionally excluded from both studies.  The studies, and SFARI, also believe without any foundation that there is such as thing as "an  autism brain" and that such "autism brains" are characterized by overconnectivity.  It is, in my humble opinion, intellectually dishonest to state that there is one model of autism brain representative of all persons with autism disorders and that such brains can be described and understood by excluding from studies the 50% of persons with autism disorders, as estimated by the World Health Organization, who also suffer from  an intellectual disability.

There are consequences to the exclusion of persons with autism and intellectual disability from "autism" studies as noted by Vivanti and his colleagues:

"As the poor outcomes associated with the presence of ID in ASD result in large human and societal costs, it is important that future research systematically investigate the risk and protective factors associated with the development of ID in ASD. Indeed, excluding individuals with ID from research in ASD only renders more difficult the ultimate goal of fostering positive outcomes for individuals with ASD. "

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