This is a Research Study: What Can We Learn about Autism from Autistic Persons?
A new study from Psychotherapy and Psychosomatics asks
Is that a question that needs to be asked?
Over at Science Daily, a review of the study is given the title
“What Happens When We Ask Autistic Persons What Is Wrong With Them?“
I kind of think that’s the wrong question to be asking.
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POSTED IN: Diagnosis, Psychiatry
9 opinions for This is a Research Study: What Can We Learn about Autism from Autistic Persons?
AnneC
Oct 7, 2008 at 3:08 am
Re. “What Happens When We Ask Autistic Persons What Is Wrong With Them?“
Ugh, the headline is bad enough, but I sincerely hope they didn’t ask the question exactly that way to the autistic people in the study.
Frankly if someone asked me that on a given day I’d probably have little clue they meant anything about autism, and would be more likely to answer something like, “Well, I’ve got a bit of a headache, and I think my shoelaces might be coming untied.”
On the other hand, though, I think Science Daily is a UK publication, and I’ve heard Brits on occasion use the phrase, “What’s wrong with you?” much more neutrally than an American saying the same thing would suggest. I still think it’s sloppy language, mind you, but given the origins of Science Daily, it might be a bit of cultural semantic confusion at work here as well.
David N. Andrews M. Ed. (Distinction)
Oct 7, 2008 at 4:42 am
I have a serious issue when scientists start to use ‘anthropological’ research methods in order to bolster arguments for personal psychopathology: this article - based on the headline in the second link - is what seems to be doing just that.
Such methods are not for finding evidence to bolster pre-ordained results… they’re meant for finding out what is going on, and usually at the ’system’ level.
Anthropological research is about cultures, not ‘psychopathologies’.
passionlessDrone
Oct 7, 2008 at 8:58 am
Well, I don’t know if the title is all that terrible, but in my limited convsersations with autistic adults, sensory overload/integration problems have been listed as very large issue. If our goal (or one of them), is to broaden understanding of autism, I think this is a good message to get out there. I know that if I keep the possibility of extreme sensory sensitivity in the forefront of my mind,it can make me a bit more cautious as to what I expose my son to, and have a better idea of what might be causing him distress in some situations.
I say, don’t sweat the small stuff in regards to wording. There has been a lot of talk on this blog about the importance of figuring out how to help people with autism; here is an instance where when asked (perhaps with a relative lack of sensitivity), people with autism have responded that in large part what they have difficulty with is not even listed as part of the DSM. This is a good baby step in finding ways to help people with autism; understanding what they feel their deficits are.
If the questionairre had asked, ‘What’s right with you?’, sensory integrqation wouldn’t have come up and that doesn’t help anyone.
- pD
Patrick
Oct 7, 2008 at 3:47 pm
I agree that the second article has a ghastly title, and the premise of the study … study their writings… are somewhat wrong.
Trying to think about a more proper method of diagnosis and classification, perhaps the people writing these instruments are the ones that need to interact with living, modern autistics, and redesign their works.
i.e. Why was there never a question about staying up 24 hours in a row performing a favored activity on any of the evaluations I have seen?
Why don’t they ask about getting stuck on a favorite food for months at a time?
Why don’t they ask about intolerable food textures?
These are just a scant few things, I am sure there are many more.
Kristina Chew, PhD
Oct 7, 2008 at 4:07 pm
Getting stuck on a favorite food and then dropping it, perhaps?—–Charlie used to be extremely fond of one particular brand of vanilla soy ice cream. Everytime I bought it, he’d try to eat the entire container at one sitting and things got to the point that he’d insist on eating the soy ice cream before the rest of his dinner. And then over a few weeks, no interest at all, and always a firm “no” when I ask him if he’d like some.
Patrick
Oct 7, 2008 at 4:16 pm
For me, no, I usually don’t have a rebound aversion or avoidance period. But I couldn’t say that others wouldn’t, as you have pointed out.
Regan
Oct 7, 2008 at 4:30 pm
Besides a little intro and the title, the Science Digest article is a straight reposting of the article abstract.
People are talking about surveying, etc., but I didn’t see the details of the method used, the actual autobiographies drawn from, or the details of the results.
Has anyone seen the full text?
Kristina Chew, PhD
Oct 7, 2008 at 5:24 pm
I haven’t. Also to note are the research affiliations of the authors, in psychotropic research, psychiatry, psychology, cognitive neuroscience.
Université Paris Descartes, CESAMES (Centre de Recherche Psychotropes, Santé Mentale);
bService de Psychiatrie de l’Enfant et de l’Adolescent
Psychologie et Neurosciences Cognitives, Groupe Hospitalier Pitié-Salpêtrière, APHP, Paris, France
C. S. Wyatt
Oct 8, 2008 at 10:44 pm
This is quite similar to the research I conduct in the Dept. of Writing Studies at the University of Minnesota. I am pulling the full-text of this article, in both French and English, for a complete review of the methodology, but I can at least explain some of what I do:
We use tools such as TAMS (search for this online) to analyze texts. Forensic analysis of texts is increasingly common, since people do write and speak in unique ways. Given sufficient textual samples, patterns definitely emerge.
I code (tag, mark) for keywords and phrases to compare clinical discussions of autism to other discussions (written or spoken) and analyze the differences. Call this ethnographic or something else, the results are purely phenomenological — they reflect only the speaker/author’s views and understandings, nothing more.
However, this is extremely valuable. My master’s work was based on this coding technique, as is my doctoral research. What I learn is how people see their own situations, which in turn helps me develop educational approaches better suited to special populations.
I also do use neurological tests, psychological exams, and other instruments, primarily to develop a “specialized pedagogy” with some level of best practices.
It does matter that autistic individuals comment more on environment and perception than do “experts” in the field. It means we should care more about the classroom spaces, sensory inputs, and other aspects of “comfort” for these individuals. Heck, a badly lit classroom is enough to destroy my week — so “social deficiencies” are way down my personal list of concerns.
I won’t bore people further, but this is a necessary and useful field of research in my view or it would not be my specialty.
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