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.  

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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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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, SFARI.org’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 SFARI.org 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.

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SFARI Highlights Serious Risk of Epilepsy for Teens with Autism and Intellectual Disability

"Children with autism who are older than 13 years and have low intelligence are at the greatest risk of having epilepsy, says one of the largest epidemiological studies on the issue to date¹. Children are typically diagnosed with epilepsy after having at least two seizures — uncontrolled surges of electrical activity in the brain. About 2 percent of the general population has epilepsy². Most studies peg its prevalence among people with autism at 30 percent.

The new study, published 4 July in PLoS One, breaks down this prevalence by age. It finds that among children with autism, up to 12.5 percent of children aged 2 to 17 have epilepsy. The rate is largely driven by epilepsy in children aged 13 to 17, who have more than double that prevalence. The study also found that low intelligence — defined as having an intelligence quotient (IQ) below 70 — is associated with a cluster of symptoms seen in people who have both epilepsy and autism. The symptoms include difficulty with daily living, poor motor skills and language ability, regression and social impairment."

SFARI (Simons Foundation Autism Research Initiative), Risk of epilepsy in autism tied to age, intelligence, Laura Geggel, August 19, 2013

The information in the SFARI article above helps inform the public about a study and an issue of great importance, one that should be brought to the attention of parents, family doctors and pediatricians and clinical psychologists - the substantial numbers of persons with autism, intellectual disability, epilepsy. and the adolescent years during which many with autism and ID first endure epileptic seizures.

The study itself could be a capsule summary of my son's disorders during his first 17 years of life.  Diagnosed at age 2 (literally the day after his second birthday) , after several months of tests, Conor suffers from Intellectual Disability the ultimae taboo in autism world discussions.  Together autism and intellectual disability increase dramatically the chances of developing epilepsy.  As the article and study it reports indicate adolescence is an age when epilepsy appears for many with autism and intellectual disability.  That is exactly what happened with our son Conor.

Conor's first Grand Mal seizure, as I reported on November 17, 2012, (No Autism. Today, Conor's Grand Mal Seizure Scared The Hell Out Of Me) literally shook our world. We had reported what we thought were seizures to Conor's pediatrician 18-24 months before.  He would suddenly stare off looking away or close his eyes as though he was in pain. His pediatrician agreed they were probably seizures but indicated medication was probably not a good idea since there was no falling involved in his seizures.  On November 17 things changed dramatically with Conor's first Grand Mal.  He would later suffer a second Grand Mal,  and shortly thereafter a life threatening adverse medication reaction, which I have also reported on this blog.

Our experience led me to believe that pediatricians and other doctors, as well as clinical psychologists, should inform parents and advise them to be on the look out for the development of seizure activity in their autistic children.  Hopefully this major study reported by SFARI and the prestige of the Simons Foundation Autism Research Initiative will encourage professionals  to inform and educate parents of autistic children particularly those with intellectual disability to be on the lookout for seizure activity and how to recognize them.  They may also want to direct them to Silently Seizing written by Caren Haines, RN and mother of an autistic son who suffered from seizures.  The book pulls no punches in talking about the damage that can occur  from seizures and would be an honest introduction to the seizure activity and its risks. 

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