Performative Acts of Autism

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Sorry if this is in the wrong place- I'm new to WP.

I paid $25 for this article, which just came out in Discourse and Society, because it's not available for free yet via online libraries. But I thought it was very interesting so I thought I'd post a summary for anyone interested.

This study was done by Jessica Lester and Trena Paulus and it's basically about the idea that autism is a constructed definition used to describe a set of behaviors which are not "normative." The reason the term autism is thrown out there by the parents in this study (of course it was children in the study because adults are rarely studied, unfortunately) was mainly because:

-Parents and "professionals" (I guess they mean doctors and educators) seem to accept that there is an autistic "look", which entails social actions, communication styles, and behaviors. They feel that others will pick up on this and so the "look" needs to be explained so people know the child isn't "stupid" or "dangerous."

-Parents do not seem to think of the child as "autistic" unless the child is around others. If they are alone with the child, he or she is merely "Bobby" or "Susie" or whoever the kid is and the parent doesn't typically mind the unique behavior and communication.

-Some parents described their children positively, but still compared them to NT children. As in, Stevie is very normal in many ways- he loves to read and he reads age-appropriate things, like about trucks and robots. He loves cookies and likes to play outdoors. He is very affectionate and has feelings. He has won prizes at school for reading and reads above his grade level, even though he is not able to talk.

***So in that example (which I paraphrased), the mom seemed to be pointing out things to dispel ideas she thought other people might have about her son, such as when she said "he has feelings". Like of COURSE he has feelings. It seemed like she said all that because he couldn't talk and she was afraid he would be judged because she knew he did not appear "normal." So she went a little overboard with how normal he was, but always in comparison with what NT children might do.***

-Parents and the autistic individual both modify behavior to be more or less "normative" depending on the situation. For example, children will attempt to act like NT in order to be accepted at school, but will display more autistic behaviors in front of a therapist.

***I was VERY interested that the fact that the individual also engaged in this modulation in behavior was NOT noted in the article. It only focused on the fact that the parents acted differently in different situations, even though a parent was quoted as saying that her child did the same thing.***

Lester noted in the article that a future article will discuss the effects of children in therapy being told that their actions and communication styles are "autistic." I'm very interested in this as well, so I'll be getting her next article when it comes out.

PS by "Performative Acts" I almost thought you meant activities like modern dance in the park! I mean like dance or performance art to describe aspects of the autism experience, such as:

"Sometimes different just means different."

"We have patchy skills. So be it."

"It's about engagement, not conformity"

I hope to see us on the spectrum build network groups and organizations which help to support each other, and I want to see us have a variety of organizations so that each of us has additional and enhanced choices. I even hope to see us engaging in fund raising including starting businesses (80% failure rate for new businesses and that needs to be known going in)

Oh, and by the way, Welcome to Wrong Planet! It sounds like you have a lot to contribute and can be a good participating member, at times of your own choosing of course.

Thanks for the interesting info. We need to continue building up the library of input from professionals, parents, friends, and from us on the spectrum. Hopefully, this body of research material will help in providing more accurate diagnoses, coping methods, effective drug treatments, and therapies. Also, it may shed more light on the causes of spectrum disorders. We need all the help we can get.

In undergraduate school for sociology, as I was mulling over going into research for autism, I was pretty frustrated about the professional opinions I was hearing about autism ("how can we cure it" "how can we help them cope" etc) and it frankly irritated me quite a lot. I was in classes with a lot of people on the spectrum and I also have several family members with AS/HFA so I feel like I have a pretty good understanding of autism even though I'm NT. I didn't get why people didn't research ASD versus NT in the opposite direction (how do autistic people deal with NTs). It seemed to me like autistic adults were invisible.

HOWEVER, I'm getting a big positive response so far as I'm talking about this to my professors in grad school. There are people who are already studying this, but it seems like there isn't an organized effort to get everyone together, so the interest isn't obvious. I think the largest "hole" in what's already being done is that there aren't enough people researching teenagers to young adults to find out how they "disappear" into looking like NTs.

And yeah, the article has a funny title. I should have clarified that I had named my post what the authors named the article.