SFARI, Once Again, Continues Misrepresenting High Functioning Autism/Aspergers Only Research As "Autism" Research

SFARI blog article depiction of a resting "Autism" brain accompanying

 review of study employing only Aspergers subjects as representing 

"autism" for comparison with non autistic resting brains

SFARI continues its agenda of misrepresenting high functioning autism/aspergers only studies as representing "autism".  It has published, on its blog page, several study reviews employing only high functioning autism or Aspergers subjects as "autism" studies, knowing that the "Autism Spectrum Disorder" is marked by substantial variation, complexity, heterogeneity.  The World Health Organization, September 2013 indicated that 50% of persons on the "autism" spectrum also have intellectual disabilities.  The fact that intellectual disability is so heavily represented on the autism spectrum  has been known to extremely well informed, exceptionally intelligent sources like SFARI for decades as articulated by CDC autism expert Dr. Marsha Lynn Yeargin-Allsopp who stated that the intellectually disabled represented the "vast majority" of persons on the pre-DSM-IV autism spectrum. Yet SFARI  publishes articles and titles  equating "Aspergers" or "high functioning autism" with the entire autism spectrum as it has done again with its review of a study of activity in resting "autism brains" (emphasis added):

'Resting' autism brains still hum with activity

Maia Szalavitz

21 February 2014

"Even at rest, the brains of people with autism manage more information than those of their peers, according to a new study that may provide support for the so-called ‘intense world’ theory of autism.

The research, which was published 24 December in Frontiers in Neuroinformatics, included nine children with Asperger syndrome, aged between 6 and 14 and ten age-matched typical children. The researchers scanned their brains using magnetoencephalography (MEG), a noninvasive method that doesn’t require lying in a noisy, confined space as magnetic resonance imaging does.?"

SFARI publishes a disclaimer on the bottom of its blog page stating that "News and Opinion articles on SFARI.org are editorially independent of the Simons Foundation." The disclaimer may well provide SFARI with protection against any hypothetical legal liability for the contents of its blog pages but it does not change the reality that SFARI determines who can publish on its site and is helping to promote a gross misrepresentation of the nature of autism disorders by helping equate Aspergers with the entire autism spectrum a task already, unfortunately,   under way with the DSM-5 unified description of the various autism disorders. 

I also understand very well, as the father of a son with severe autism disorder and intellectual disability, now 18, that the inclusion of persons with severe, low functioning autism in MRI studies would be extremely difficult and probably impossible.  Articles that use only Aspergers or High Functioning Autism should be described in those terms throughout the article and title and conclusions should not be drawn about persons whose intellectual disability precludes their participation in the study.    

SFARI's failure to ensure that writers using their site privileges do not generalize to the entire autism spectrum of disorders studies involving only High Functioning Autism/Aspergers subjects is not supported by evidence and is irresponsible.  

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. "