Sunday, December 15, 2013

Emily Willingham Uses SFARI Pulpit To Misrepresent Severe Autism Disorder And Intellectual Disability

Emily Willingham argues that persons like my son, 
with severe autism disorder and intellectual disability, 
should remain invisible with the focus on those with
"pure" autism and no intellectual disability

SFARI has done Emily Willingham a favor, allowing her to use their site as a platform to further her efforts to render invisible the realities of life facing those with severe autism disorders and intellectual disabilities.  Willingham has no professional expertise in autism disorders on which to base her opinions.  Nor, as the parent of a high functioning autistic child, does she have any personal, real life experience on which to draw in pretending to know anything, anything at all, about the challenges faced by those with severe autism disorders and intellectual disabilities. To the contrary she is fundamentally ignorant of those severe autism realities.   That ignorance does not prevent SFARI from publishing her nonsensical essay "Cognitive Dissonance" in which she asserts that no attention should be paid to cognitive levels in assessing the severity of autism only to the core criteria of the autism spectrum [[At NO point in her opinion piece does Willingham refer to Autism Spectrum Disorder as a DISORDER. She refers to autism only as a spectrum, a condition or a metaphor]] :

"Each time my son, who is 12 years old and has autism, meets a new doctor, he hears the same awkward question, addressed not to him but to me: “So, he’s high functioning?”
The question communicates the assumption that the major concern and predictor of future success for a person with autism is cognitive function — and the assumption that my son’s function is sufficiently intact for me to respond “yes” when someone tactlessly asks that question in front of him. But how relevant is it?
Intelligence quotients (IQs) and severity of symptoms and manifestations can vary widely among people with autism, but the common thread obviously is the autism itself and the core deficits that accompany it. As the results of two studies published over the past few weeks emphasize, autism — along with the key deficits in social communication and interaction that define it — deserves more focus than the other variables that lend the condition its ‘spectrum’ metaphor."
Willingham refers to two new studies which, she apparently believes, support her view that only the core conditions of autism as set out in the DSM5 Autism Spectrum Disorder should be considered as relevant and deserving of focus than "the other variables that lend the condition its "spectrum metaphor"".   The 1st study compared various quality of life measures of 169 high-functioning (IQ>70) adults with ASD  to 3 groups of persons with ADHD (85), affective disorders (85) and disruptive behaviour disorders (83).  

The 2nd study referenced by  Emily Willingham is interesting in that it is based on data from the Simons Simplex Collection described by Willingham:

"(This collection of data from families that include one child with autism and unaffected parents and siblings is funded by the Simons Foundation,’s parent organization.) The [participants] teenagers all carry a diagnosis of autism spectrum disorder and are all of at least average intelligence."

Neither study compared quality of life indicators as between groups of persons with autism spectrum disorder and various levels of intellectual disabilities with those of average or higher levels.  There were no participants in either study who had an autism spectrum disorder and an intellectual disability.  The studies cited are meaningless in light of the fact that approximately 50% of those with an Autism Spectrum Disorder are estimated by the World Health Organization to have an intellectual disability: WHO, September 2013. The DSM-IV definition of Aspergers Disorder stipulated that an Aspergers diagnosis could not be given in cases where the individual had an intellectual disability.  These are significant facts of which Ms Willingham appears to remain blissfully unaware.  If the suggestion by Emily Willingham to embrace the long entrenched, misguided tendency to ignore intellectual disability in autism spectrum disorder research is accepted it will further lessen the chances that the challenges facing those most severely affected by autism spectrum disorder and intellectual disability will benefit from any such "pure" autism research. 

SFARI published the disclaimer that Willingham's opinion comment like all News and Opinion articles on are editorially independent of the Simons Foundation.  Yet the fact remains that SFARI allowed Willingham to use the SFARI pulpit to misrepresent the realities facing those with severe autism disorders and intellectual disabilities to the world. 

There is little reason to hope that persons with severe autism disorder and profound intellectual disability, people like my son, will ever benefit from "autism" research as long as Willingham, SFARI and others perpetuate the "pure" autism focus that Willingham believes would be of benefit to her High Functioning Autistic son.

1 comment:

Anonymous said...

I have no doubt this woman is autistic herself. I feel for her kids.
I find it unbelievably creepy that she left Texas, like Chew left New Jersey, and moved to the Bay area to join the other pack of rats in their endless ramblings for the pro neurodiversity movement. The fact that these people just quit their jobs and move to be in the same area shows me complete instability so take whatever they say with a grain of salt. They come across as grifters who are desperate for attention. Again, I feel for all of their kids.