Monday, June 22, 2009

Does Exclusion of Low Functioning Autistics from Autism Research Distort Public Understanding of Autism Disorders?

Why are Low Functioning Autistic persons excluded from autism research as in the recent study purporting to show that autistics solve some problems faster than non-autistic persons? To me it seems like "cherry picking" the participants as Roger Kulp called it in a comment about the Soulières Mottron Dawson study:

"could someone remind me what they mean by "additional neurological condition"? Seizures? Nonverbal learning disabilities? Sterotypy or self mutilation? Developmental delay ?You don't have to be low functioning,you just have to be a nonaspie to be excluded from a lot of these studies.

By cherry picking your subjects like this,you can exclude and distort all you want.

In both the articles about this study,and the ones about the 2007 study,they make a point of saying that at least 40-50 % of all "autistics" are not learning disabled,and imply we should focus on the ones that don't.There is an obvious neurodiversity/aspie bias in the media."

Roger's comment suggests that the exclusion of low functioning autistic persons from autism research might be done, intentionally, to misrepresent the nature of autism. In essence Aspergers is substituted for "autism". The many low functioning persons with Autistic Disorder can now be considered to have separate co-morbid conditions which are not really part of true "Aspie" autism.

The exclusion of low functioning autistic persons from autism research is followed by their exclusion from research press releases and from the public understanding of autism. Perhaps that is the ultimate goal of researchers Soulières, Mottron, and Dawson when they cherry pick participants for their "autism" research.




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8 comments:

Socrates said...

There are a number of criteria used to judge if it's ethically acceptable to use kids in studies.

It's difficult to meet these conditions with lfa kids.

farmwifetwo said...

I think the Low/Severe end needs to be represented and then separated. There are some like my youngest son who is very bright with a language delay that is keeping him behind. He decoded words and reads at a beginning Gr 3 level but comprehension appears (yes, used that word deliberately) at a Gr 1. Why?? Because he answers black/white questions. He cannot extrapolate what might happen next, what is the consequences of that behaviour etc. Abstract is something he does not understand.

He can use a calculator to do his Math, because he doesn't understand that he can go from using fingers and counters to memorizing the math facts.

He doesn't understand written problems but is mastering basic graphing.

There are many strengths/weaknesses that should be tested for this style of learner.

Then there are others like your son that are more developmentally delayed, that too needs to be tested. To discover where the break downs in brain function and learning occur.

How are we to help these children to become "more" and speak for themselves if we can't help them??

I also think it's time that those with Asperger's stop claiming to have Autism... They don't. They are part of a "spectrum of disorders"... they do not have AUTISM. Therefore they cannot speak for those that do. That's misrepresentation of what their diagnosis is.

Researchers must also separate these groups as well. They too are distorting their results by ignoring that Aspergers/NLD/PDD/Autism are all different.... My son has severe non-verbal PDD... He is learning to speak and right now it's all mands or oral book reading. It's not conversation so it's still "non-verbal". It's PDD because he doesn't have anxiety or behavioural issues. He does have sensory ones. It's PDD because he is capable of learning in any environment as long as he has 1:1 teaching to show him exactly what's going on. He does pick up a lot in the group setting and he enjoys being part of the group.

I don't claim that he has "classical autism"... those with Asperger's shouldn't claim they have "autism" either.

S.

jypsy said...

"Why are Low Functioning Autistic persons excluded from autism research as in the recent study purporting to show that autistics solve some problems faster than non-autistic persons?"

I suggest you ask the author about why people were included or excluded, rather than engage in wild speculation. There are reasons and they aren't "cherry picking".

Below is an invitation that arrived in my mailbox yesterday. Why are they excluding "high functioning" autistics? I'm sure it's not "cherry picking" just because they haven't explained it all to me in this letter.

I don't at all believe there is an "exclusion of low functioning autistic persons from autism research".

Dear Parents:

Dr. Steven Shaw's research group in the Department of Educational and Counselling Psychology at McGill University in Monteral, Canada is seeking families with a child diagnosed with Autism (lower functioning) between the ages 6 and 18. Families will participate in a research study investigating the relationship between stereotypy (repetitive motor or vocal behaviors commonly exhibited by children with autism) and emotion regulation.

Participation involves a parent completing a short questionnaire over the phone that asks about the child's stereotyped behaviors. Parents will also complete two brief online questionnaires that ask about the child's emotions, daily behaviors, developmental level, and diagnostic history. All information will be strictly confidential. The total time to complete the study is approximately 2 to 4 hours. Families will be compensated for their participation.

Please contact Sarah at researchstudy.mcgill@gmail.com if you are interested in participating in this research study.

Autism Reality NB said...

Socrates

Perhaps you could articulate the reasons why it would be unethical to have LFA kids involved in THIS study?

As the father of a low functioning autistic son, diagnosed with autistic disorder and assessed with profound developmental delays, and as a lawyer I see no ethical restrictions on having my son participate in test completion study. This does not involve the testing of a new invasive medication or treatemtnt, essentially it involves writing an exam, much like in school.

I see no ethical issues which would have precluded participation of LFA subjects.

Autism Reality NB said...

jypsy

1. Please refrain from telling me how to exercise my freedom of speech, particularly on a public matter which affects my son.

2. I did not engage in ANY wild speculation. I reported the following facts:

a) The study involved ONLY High Functioning Autistic persons and EXCLUDED Low Functioning Autistic Persons.

b)The study participants, as a read of the study itself shows were carefully and intentionally chosen.

c) The official U de M press release did not mention that the study was based entirely on High Functioning Autistic persons or that Low functioning autistic persons were excluded.

d) The press release generalized the results to persons with "autism" which includes persons with Low Functioning Autism.

It is a reasonable inference to conclude from these incontrovertible facts that the authors of the study and press release WANTED the public to believe that their study results applied to all autistic persons even though it was based only on High Functioning Autistic persons.

jypsy said...

Mr. Doherty,

1. I did not "tell" you how to do anything, I made a "suggestion" you are free to ignore.

2. You speculated, among other things that the selection "might be done, intentionally, to misrepresent the nature of autism". That is a pretty wild speculation IMHO.

a-d. How does this compare to all other press releases and media articles about all other autism studies?

Asking the author(s) would clear up all speculation (wild or not) and "inference" ("reasonable" or not). But if you'd rather speculate and draw inferences than actually know and understand, I certainly won't stand in your way....

Autism Reality NB said...

jypsy

I accept your clarification. Please refrain from making such "suggestions" in future comments on this blog site.

You keep referring to "pretty wild speculation".

It is nothing of the sort. It is a reasonable inference draw from facts which you have not refuted.

You ask me to address all other studies and press releases? Get serious. I am discussing this press release and this study.

If you can't refute the facts I have set out, and you can't then please tell me why you think the inference I have drawn is unreasonable given those facts. I don't think you can.

jonathan said...

Harold: The likely reason that lower functioning autistics were specifically excluded from the Souleries et. al. study is that it involved functional magnetic resonace imaging in which a subject has to lie still in a hollow, narrow metal tube and cooperate with the experimenters to do the task and be able to sit still and not make head movements which would cause artifacts to confound the measurements. I suspect that most autistics with IQ's lower than 85 or whose functioning level was so severe that they would have behavioral problems reflective of lower functioning would not be able to sit still in the fMRI scanner and complete the tasks, so Souleries had no choice but to exclude them.

It is true that Souleries failed to acknowledge the limitations in her study that exclusion of the lower functioning autistics caused as well as the disingenous spin that she and Mottron presented to the media, which would imply to someone ignorant of the facts that the results of this study could be generalized to all autistics and I agree with you that this is indefensible.

It would be great if someday technology could be applied so that lower functioning autistics could be included in brain imaging and event related potential and mu wave studies and things like that. Hopefully someday science will find away around this and I think if that were the case scientists would start studying lower functioning autism more than they do and these people would be actively recruited as research subjects.
It would be great if experimental techniques could be deve