Sunday, March 27, 2011

Will The Intellectual Disability Elephant In The Autism Room Be Mentioned On World Autism Awareness Day?

From 30% to 60% of children with an autism spectrum disorder (ASD) have an IQ measure that falls in the intellectual disability (ID) range.

(Catherine Rice et al., Risk for cognitive deficit in a population-based sample of U.S. children with autism spectrum disorders: Variation by perinatal health factors, Disability and Health Journal, Volume 3, Issue 3, Pages 202-212 (July 2010)

The above range refers to the entire range of Autism Spectrum Disorders including Aspergers whch, by definition, excludes anyone with an intellectual disability. If you exclude Aspergers from the calculation then you are looking at a figure similar to the 80% figure referenced for non-Aspergers autism referenced in the 2006 Canadian Senate brief of the Canadian Psychological Association.  Yet we continue to ignore intellectual disability in our public discussion of autism.  Intellectual Disability is very much the elephant in the autism room.

One aspect of autism awareness events that puzzles me about autism awareness events is the extent to which they don't really raise awareness about the realities of autism disorders.  In many cases there will be no mention of the fact that autism disorders are exactly that ... disorders ... diagnostic categories listed in the Diagnostic and Statistical Manual of Mental Health Disorders of the American Psychiatric Association.  As the father of  a son with Autistic Disorder and "profound developmental delays" .... intellectual disability .... I have long been annoyed by the persistent attempts to hide under euphemisms like "profound developmental delay" and under blurred professional terms like "co-morbidity" the obvious fact that Autistic Disorder is actually a form of intellectual disability.  I am not just talking about IQ test scores although I am not a member of  the trendy IQ scores don''t count crowd.  Serious functional impairment in daily life is a real characteristic of Autistic Disorder. 

With news that the DSM5 would formally combine Aspergers with Autistic Disorder and PDD-NOS into the New Autism Spectrum Disorder the media rushed to report that some with Aspergers were concerned about being lumped together with the "other" autism categories, the categories which included those with Intellectual Disabilities.  No discussion of, absolutely no discussion, occurred, outside of this humble blog, about the possible negative  impact on the many with Autistic Disorder and Intellectual Disability of having the Intellectual Disability aspect of autism hidden further from public view.

Don't hold your breath while you search for information about Intellectual Disability and Autism on World Autism Awaerness Day.  On World Autism Awareness Day you are unlikely to find any mention of this important aspect of autism reality.  Unless you check this blog, Facing Autism in New Brunswick.  


Stranded said...

But then it would become a problem and something would have to be DONE about it. No no, lets leave it as a difference, we just have to be tolerant and speak to autistic children in patronizing sing song voices, put them in body socks and it will all be ok.

Adrianna said...

I, of course, agree with this assessment. I have a difficult time finding support groups for FHA/Asperger's that don't center around the "We're just geeks!" theme.

Anyway, IQ scores are limited in their ability to assess true potential, but they provide a reliable baseline and can identify problems that interfere with one's testing ability. If you cannot fit round pegs in round holes, that's a pretty reliable indicator that you have an ID. People like that are in a very different situation than someone who could theoretically be a genius but just needs to find an IQ score "in his language," so to speak.

Claire said...

"...the obvious fact that Autistic Disorder is actually a form of intellectual disability." Good lord, Harold, you are living dangerously today (the truth of the statement notwithstanding)! Wondering when the attack comments will be hitting...

Autism Mom said...

NO, it will not be mentioned.

Anonymous said...

I have signed up at Bloggers-unite and found you there. I will try to help spread the word the best I can.
I am not educated on Autism but I am trying. I have added your link to the post I am making to post on April 2 or before, along with your message "One aspect of autism awareness events..."

I hope my blog opens an eye or two and will help in a positive way for this cause.