Monday, January 06, 2014

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. 


Roger Kulp said...

I find it very interesting.My sister who has HFA,a lot higher functioning than I'll ever be,has never been able to retain a memory more than two years.She has no memory at all of her life before that time.I wonder if this is unique to the higher end of the spectrum.

Anonymous said...

Beware ALL studies. The APA has totally muddled the "Autism" diagnosis. Most studies are based on very small populations, or "one shot" observations... Autism is the Dx-du-jour: want funding? want publication? Put "Autism" in your title, and you're in.

Roger, I know MANY people throughout the spectrum - some are near eidetic, some are practically amnesiac. The same sort of variety exists in the population as a whole, no? There you go: Human Spectrum Disorder: we ALL have it.

AutisticWisdom said...

We're not even talking about excluding severe/profound ID here, if it's IQ > 70 even mild-moderate cases are excluded. And that's not even considering the kids who have such scatter an IQ of 70 is meaningless. Researchers often do what is convenient; unfortunately for us, this means a lot of research that applies to only some of the ASD population.

AutisticWisdom said...

Now I read the study. Interestingly they control for IQ (supposedly) but do not control for language. Is this study really measuring memory or simply expressive language? My higher-functioning son remembers fine, but he cannot always verbalize it.

Anonymous said...

As with any psychology study, the more variables that are included the harder it is to prove your theory and get published.

Anonymous said...

Did you see Kim Oakley's 12/17 post on this topic?