Wednesday, July 20, 2011

DSM5 Exclusion? Autism Research Already Excludes Intellectually Disabled

"All children had normal IQ"

Abstract - Methods, Cheung C. et al, MRI study of minor physical 
anomaly in childhood  autism implicates aberrant neurodevelopment in infancy 

I have written several times on the exclusion of the intellectually disabled from autism diagnoses in the DSM5. Some people whose opinions I genuinely respect, but disagree with on this subject, have indicated that my interpretation of the new Autism Spectrum Disorder wording is incorrect. I am not convinced, much as I would like to be, and I have not been persuaded that my interpreation is incorrect.  

Another point I have made, which dovetails with this issue, is the exclusion of the intellectually disabled from autism research, a trend which has been going on for some time and is particularly clear in the MRI autism brains scan studies. The Cheung et al study published recently follows this trend: PLoS One. 2011;6(6):e20246. Epub 2011 Jun 8.

The exclusion of the intellectually disabled from the DSM5 Autism Spectrum Disorder, which might more accurately be called the Aspergers Spectrum Disorder, is in fact following the recent tendency to exclude the intellectually disabled from autism research. As a parent of an autistic son with "profound developmental delays" my opinion on this autism research tendency  is probably considered suspect but I would refer doubters to the statement by Catherine Lord, prominent autism researcher and DSM panelist in 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, for what appear to be nothing more than reasons of research convenience, has already excluded intellectually disabled subjects. The DSM-5's Autism Spectrum Disorder reflects this trend. The severely affected by autism, the intellectually disabled, will be excluded from the ASD, from services and from our consciousness ... out of sight, out of mind.  

6 comments:

Jon Brock said...

Hi Harold

As you know, I think you're wrong about DSM 5 - it doesn't make sense to exclude the people with the greatest needs from an autism diagnosis.

But I completely agree with you about exclusion of the intellectually disabled from autism research. As you mention, it's part convenience - speaking from experience, it's just much harder working with more severely autistic people.

But there's also a misguided (in my view) assumption that high functioning autism or Asperger's is "pure" autism and so studies of these people gives us cleaner results. Certainly the results of such studies are easier to interpret, but it doesn't follow that they necessarily can be extrapolated to the more severe end of the spectrum.

Autism Reality NB said...

Thanks for your comment Jon. I hope you are right that intellectually disabled will not be excluded from the DSM5 autism definition. I hope I am wrong on that point. It doesn't make sense to exclude those in greatest need but human behavior, including the behavior of health care professionals, has not always made sense.

jonathan said...

If you could suggest to scientists a way that severely autistic persons could be compliant in fMRI experiments, brain wave experiments, etcetera, i am sure they would be glad to hear them.

trainspotter said...

I also have to respectfully disagree with you, Jon. (Forgive my little tangent...) I have a daughter who was booted from a government provided early intervention program due to her 'low-functioning' profile- despite her outstanding progress. Unfortunately, "progress" was not determined by where my daughter began in the program but was measured against the gap between her and her neuro-typical peers (since she was almost five before she got into the program the bar was already set quite high). This is, clearly, an advantage for the 'high-functioning' children who appear far more impressive even with mild to moderate gains (and I know some HF kids who've had 4+ years in the program with minimal progress). These days, the 'low-functioning' children (those with the greatest need) don't even qualify for the intervention program in my region. What's worse, they have no where to go since all the money is being sunk into a program they're now considered "too hopeless" for.

It's bad science to exclude the 'harder to work with' from studies- but it happens. It's cruel to withhold services from those who don't make your paperwork shine- but it happens. It doesn't make sense to exclude those with the greatest need from an autism diagnosis... but 'sense' seems to be a rare commodity these days.

Autism Reality NB said...

Jonathan maybe they could ask for assistance from parents of severely autistic children who face these challenges 24-7, year after year. Or maybe they could ask those professionals who actually provide intervention services to severely autistic children to provide assistance. Some severely autistic children have been subjects of studies.

My son Conor is very severe and profoundly developmentally delayd. He has however cooperated in various scans and operations provided by dentists ... with my involvement.

Ian MacGregor said...

Perhaps the DSM V will require professional to figure whether a child's lack of social interaction is what is expected from someone with his level of intellectual disability or exceeds it. In the latter case the person would get both an ID diagnosis as well as one of autism. In the former only an ID diagnosis would be given.

Thus not everyone who is intellectually disabled would lose their autism diagnosis, but those who have profound or significant ID would be in great danger.

My daughter would certainly be in peril losing her diagnosis, but as her challenges are so much different than those who are Asperger's, I'm not sure this is a bad thing.

I do think however that plain ID does not fit. I don't know how many people with ID go through mental developmental regression and lose so much of their abilities. Also while she was able to talk and sing along with me, she was still extremely behind socially. I think something other than autism, or ID is needed to describe her condition