Biased Research on Perceptions of Autism

Over at Astrid's Journal, Astrid is talking about a recent study that claimed to look at "lay perceptions" of autism. While she does have a point that there is a divide in the autism community in how autism is portrayed, the study she cites is absolute nonsense.

The "study", and I use that term loosely, gave ten "lay" people (people not involved in the autism world) a "semi-structured" interview about autism and then looked at the data using "interpretative phenomenological analysis" and "discourse analysis". Yes, those are real things.

Based on their analysis, the authors came up with the following conclusion -

Participants demonstrated clear views (although not necessarily correct) about the nature, origins and manifestations of autism. They drew upon their understanding of normal child development to make these assessments and they made judgements about the ability of individuals with autism to attain social independence. It is recommended that interactions between lay people and people with autism may help develop positive conceptualisations of autism.

I have not read the study, nor do I intend to, because by the time you actually read the study (or the conclusion), you have missed the point. Where any discussion of this "study" should have stopped is at the point where they point where you see that the results are based on the opinions of just 10 people.

To be fair, Astrid does note that "the study group was very small (only ten participatins), so no generalizations should be made" but I think that is the wrong way to think about the "study". Ten random people cannot be representative of anything, especially a population as large as the "lay" autism population (think billions).

So, the question is then what are these ten peoples' opinions being used to represent? Or to borrow a line from the person who writes The Last Psychiatrist, what do the authors want to be true?

To help answer that question, I would direct your attention back to an earlier "study" written by the same two people that looks suspiciously familiar. In this "study" the authors gave a "semi-structured" interview to 9 young people with high functioning autism who were "capable of providing a verbal account of their perceptions of autism and diagnosis experiences" and looked at the data using "interpretative phenomenological analysis".

Notice the setup. Another infinitesimally small group whose opinions were analyzed and taken to mean something. The conclusion from this "study"?

In relation to the existing literature, it is suggested that the effects of diagnosis, or disclosure of diagnosis, from the perspective of the person with autism be given greater consideration.

So, what do the authors want to be true? They want to people with autism (presumably the high functioning ones) be given a greater voice in describing their autism and "lay" people to interact with them so that they can develop a positive attitude towards autism.

OK, fair enough, people with autism are people just like everyone else and have the right to have their voices heard. But what do we do with the vast number of children with autism who aren't able to communicate well enough to provide their perspectives of autism? Do we let the young, high functioning adults give a perspective for them?

Should we keep on ignoring their needs while singing kumbaya and thinking happy thoughts about autism?

The real questions are how did this nonsense get published in the first place and how did the authors get away with suggesting that they are talking about the other people's perceptions of autism. If they wanted to voice their opinions about autism, they should write articles that state that these are their opinions and publish them as such.

We don't need more junk pretending to be science.

References (and I use that term loosely)

Huws JC, Jones RS. Diagnosis, disclosure, and having autism: an interpretative phenomenological analysis of the perceptions of young people with autism. J Intellect Dev Disabil. 2008 Jun;33(2):99-107. PubMed PMID: 18569397. DOI: 10.1080/13668250802010394

Huws JC, Jones RS. 'They just seem to live their lives in their own little world': lay perceptions of autism . Disability & Society, 25:3:331-344. DOI: 10.1080/09687591003701231