Friday, March 13, 2009

Are Low Functioning Autism Subjects Excluded From Autism Research?

How often do you see studies or reports about low functioning autism? It appears that research about "autism" is skewed towards research of high functioning autism and Aspergers as in the above notice requesting research participants for an Ontario autism study. If research is focused exclusively, or almost exclusively, on participants with high functioning autism or Aspergers how much do we really know about Autistic Disorder which, by definition, includes those with low functioning autism?

I entered the words "functioning autism" into the Google Scholar search bar. The first 3 pages, the first 30 entries, all referred to high functioning autism. 2 out of the 30 results referred to low functioning autism in connection with high functioning autism. None of the results referred solely to low functioning autism. Entry of the term high functioning autism in the Google Scholar search bar produced 56,800 results. Entry of the words low functioning autism produced 44,900 results.

I am not suggesting that such searches are probative, scientific or thorough. But they leave me with an impression that autism research tends to be skewed toward high functioning Autism (and Aspergers) and tends to exclude low functioning autistic subjects. If anyone knows of any surveys of the professional literature that have been done which might confirm or refute this impression I would be interested in reading them.

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Barry Hudson said...

Hi Harold,

I too was wondering the same thing. Where our son (4 1/2 now) is going to land developmentally is still to be determined. That said, he is doing very well with his ABA therapy. I also wanted to find more research (for all "places" on the spectrum) since I want to have the best knowledge I can to help my son (no matter where he lands developmentally). I have even spent significant time in the university libraries (here in Toronto) and see most research oriented to those that can be “best outcome” potential. Preschool age research, what appears to be where the most research is done, from my experience, tends to focus on how to get to the best outcome but where a person may not reach the best outcome there seems to be a lack of information. My review is also not scientific and to be fair I have read quite a bit of research on the means of toilet training and self help skills for those that may be on the lower abilities/more significant deficits side of the spectrum but it appears just to be more focused and procedure finite in applying ABA (i.e.: teach skills very cumulatively over a VERY VERY long period of time).

I may not be entirely accurate but I see that there is a bias. Is science still giving up on more difficult conditions just like society? I don’t know but if it walks like a duck…… Here in Ontario this bias is built into the government funded therapy model – After waiting two to three years on a wait list, if your child does not progress in the stream of best outcomes you are kicked out of the program and funding stops (we have been self funding our son's therapy for two years now since I am sure if we did not do this he would have been "too autistic" to even qualify). I know families that have children that did not look like best outcome potentials early and were kicked out of government funded therapy – they persevered on their own and their children have made great gains (these are very motivated parents and they dang well deserve a gold medal for their tireless efforts). These parents could not find any research either and actually found research that focuses on global developmental delay to be more beneficial. While we live in a better age there is still quite a bridge to gap in both social understanding, and more importantly, research that will help every part of the ASD spectrum.

jonathan said...

From what I understand, research is geared more towards higher functioning autistics than lower functioning autistics due to issues of compliance. The lower functioning autistics would not sit still in an fMRI machine or do the task. They might make too many movements and not sit down and be compliant with an event related potential study, which would create artifacts in the brain wave readings and cause misinterpretation of results.

Also many of the lower functioning autistics have known genetic disorders such as fragile X, etc., which would probably exclude the bottom 10% of autistics in terms of functioning levels from research. This is because researchers want a homogenous as possible group for their research and certain genetic disorders might produce artifactual results.

Your point that this might not be representing a true picture of autism as a whole may be a valid one, but not sure how the issue could be resolved.

A Family said...

Autism research should, can and must include people in ALL ends of the spectrum, or it is not autism research. It is simply a certain part of autism. I agree with you!