A recent post at savageminds/SavageMinds encouraged me to check out the blog Gene Expression, and I found a use of language that particularly disturbed me. To confess my own personal bias, I am very mildly autistic, and my undergrad-advisor-turned-close-friend has an aspie child; I also have a number of friends my own age with AS. I think a lot about the discourse of autism in the media and would like to try to write/research that fairly soon.

The original post is here. The term as used in the article is defined like this:

"ethno-autism, roughly speaking, [is] an inability to conceive other peoples and cultures as fully fleshed out organisms who have their own creativity, histories and genius, and most importantly values congruent with those of modern Western civilization."

Speaking as someone with autism here, I'm going to say that this is a gross misrepresentation of autism as a condition. The analogy they're making is between the autistic's supposed inability to understand other people's thoughts and feelings and the, dare I say bigots?, referred to on the site failing to understand the humanity of other cultures. This, however, is a dangerous and unhelpful metaphor. It's not that we don't understand THAT other people have thoughts and feelings in the way that bigots have a blind, unthinking hate: it's that their thoughts and feelings seem unpredictable to us. My friends and I have had long discussions of how Wittgenstein's notions about the ways in which we use language in the Tractatus and PI are similar to the autistic experience, and I think that's an awfully good metaphor. We play language games to try to communicate with our neighbor, but ultimately we cannot know that they mean the same thing that we do when we use a word. Their brain is a black box.

A common aphorism thrown around the autistic community is: "NTs (neurotypicals, the opposite of autistics) assume everybody thinks like them until proven otherwise; autistics assume nobody thinks like them until proven otherwise." Because, a lot of the time, other people's motivations don't make SENSE. The experience of being an autistic is a lot like the experience of being an ethnographer--we're in a culture we don't understand, and forced to rely on our ability to observe to learn, get by, and adapt to the world.

In short, this metaphor is using ableist language, and it's simply not an appropriate one for an anthropologist (at least if they buy into almost any of the standard doctrines and theories of our field) to be using, because it's really dragging the autistics down by casting almost a moral judgement on our condition. I have an easier time understanding when people use ableist expressions like "blind luck," because, while it's still insensitive and shouldn't happen, the word has a meaning outside disability in the English language, and those metaphors have gotten really divorced in most people's heads from disability. But autism? Autism has no meaning other than being the name of a specific, rather well known, genetic condition with environmental triggers. Yes, a gene expression. Does anyone see the problem here?

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All that said, I'm going to say that I have NO idea what a really profoundly autistic person's reality is like, and that people may very well equal lamps for them (as in the popular conception). Also that all children go through a developmental stage where they don't understand the motivations of others, and that this stage is prolonged in children with autism, and the media likes to make us forget that there are adult autistics. All this discourse in the media lately has been centered around proving that autistics supposedly don't use the same cortex in the brain as other people do to process people, which I think is basically wrongheaded and reductive. I haven't done enough research yet to understand all of it well enough to write a really great commentary, plus I haven't touched the subject in a while as I've been busy on other projects.

But here are two interesting articles:
http://www.sciencemag.org/cgi/content/full/286/5445/1692
http://news.xinhuanet.com/english/2005-03/07/content_2661318.htm

And a website written by autistics: http://www.autistics.org -- if you visit nothing else on this site, visit, in this order, 1, 2, 3 (this is humor people!).

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I also saw a really good episode of Missing: Without A Trace this week. It was about a young child who had autism and runs away during a museum trip. It was a really thoughtful portrayal of not only his disability (and they actually made a genuine effort to research the symptoms and what an ABA behavioral therapist does, apparently, although it didn't portray the disorder as quite as bad as it can be), but the kinds of family struggles and frustrations a disability often engenders.

From entertainyourbrain.com:

“Without a Trace” (CBS; ends at 10 PM)-The FBI team searches for a 12-year-old autistic boy who vanishes from a Manhattan museum while on a school field trip. In addition to being a very moving and accurate story that depicts a family with an autistic child, as well as some of the varied traits of the affected child, the actors who play the parents, Christine Tucci and Vincent Angell, are really married and are themselves the parents of a 3-year-old autistic son. According to Christine and Vincent, this is probably the most important role of their lives, considering their connection to the topic, and they applaud the writer of the episode for the accuracy of their portrayal. Also, Christine and Vincent taped a PSA that will run at the end of the episode encouraging parents to seek out early diagnosis and intervention, directing viewers to www.autism-society.org.

The episode is entitled Volcano, and I also found out that the device the father uses to locate the son is real and is called CareTrak/Project Lifesaver. Here is a thread in an autism community discussing it.

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And, in the NY Times, they're talking about a kind of quackery that frustrates me: the belief that mercury in the water causes autism. People, there is *NO* (I have searched and searched) reliable public health data to be found that supports this claim. And children are suffering through dubious medical treatments for it.



This post will probably continue to be updated.

(people coming here from savage minds, photoethnography.com, and gnxp: you should be able to comment as anonymous users--signing the name you're using over there and/or linking to your blog would be helpful for me though!)