A couple of months ago, one of “Kerim’s posts”:/2005/06/19/funny-you-dont-look-jewish/ led to a mini-discussion in the comments section about the site “Gene Expression”:http://gnxp.com/. Within this discussion, the use of the term ethno-autism was brought up. As defined by Razib, the author of “this post”:http://www.gnxp.com/MT2/archives/001967.html at Gene Expression, ethno-autism 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.
This wasn’t the first time that I had heard this type of analogy. In another time and place (my vagueness here is deliberate to respect the confidentiality of the people involved), I reacted to an analogy between autism and the incapacity to perceive that others may think differently than oneself. And at yet another time, I read an article (wish I could provide a reference but I lost it) that stipulated that autism was an extreme form of the “male brain”.
In any case, the usage of the term ethno-autism caused a bit of a reaction within the discussion following Kerim’s post (don’t worry, nothing violent) and, at the time, I felt unable to pursue the matter in depth, having an autie in my family and being close to the situation. However, Kathy (aka museum freak) from Livejournal had “this”:http://www.livejournal.com/users/museumfreak/272758.html to say about the term:
. . . 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.
I’m inclined to agree with Kathy here. I would add that, rather than make such an analogy to describe extreme ethnocentrism, which is what is actually being described in Razib’s post as far as I can tell, it would seem to be preferable to simply call it what it is. The analogy between extreme ethnocentrism and autism obscures the fact that most extreme ethnocentric people are not autistic and are actually perfectly capable of understanding that people from different cultural backgrounds as them might think and perceive the world differently than they do.
Now, I don’t think that Razib was intentionally trying to propagate a negative imagery of autism. He did admit that he hadn’t put much thought into it so I’m assuming that, like many, he’s working under the assumption that there is one single form of autism.
This leads me to my main point (well, one of them anyway): the term “autism” has been thrown around all over the media in the past . . .say . . .decade or so and yet there is still very little social awareness of the realities of this way of being (you’ll understand soon why I call it a way of being rather than a “condition” or “disorder”.) In North America, and possibly elsewhere, we live in a society where I would assume the majority of people have been sensitized to the needs of people with “physical handicaps” and who would acknowledge that holding a door open for a person in a wheelchair is the proper thing to do. However, when it comes to what many people would describe as “mental handicaps”, the mainstream attitude carries more of a tendency to judge and ridicule than to understand and help.
The mainstream view of autism and related modes of perception is highly negative: tragedy, dismay, trauma, difficulties are all words that are commonly associated with the life of an autie and her/his family. By no means am I saying that it’s easy and that everyone would be happier if they were autistic. However, I think that there are interesting alternatives in thinking about autism. The most interesting ways come from autistic people themselves.
For example, I’m highly interested in a recent discovery that I’ve made by following a series of links beginning with Kathy’s post: there exists an “autistic culture”:http://en.wikipedia.org/wiki/Autistic_culture consisting of auties, aspies, cousins and allies. The shared belief is that:
autism, as a unique way of being, should be embraced and appreciated, not shunned or cured
There is an “Autistic Pride Day”:http://en.wikipedia.org/wiki/Autistic_Pride_Day. There are people who seek recognition of “neurodiversity”:http://en.wikipedia.org/wiki/Neurodiversity. Heck, they’ve even got t-shirts! The similarities with queer pride movements are unmistakable and like with any other sub-culture, I’m certain that there is divergence within the group about various issues. In any case, I’m curious to see what kind of momentum this movement will take. I have a feeling that as people become more sensitised, Autistic Pride will become better known.
In the meantime, I’m also curious about how autism is dealt with cross-culturally. What do ethnographers have to say about the way people who would be diagnosed as autistic by North American or European psychologists are treated within their own societies? Are people ostracised? Accepted? Nurtured? Considered to be functional members of the cultural group? Have special status? Not considered as abnormal? What changes came about in various local conceptions of “autistic” people due to colonisation? What changes are coming about due to globalisation?
Perhaps there are obscure answers to these questions here and there in various ethnographies . . . but has there been cross-cultural research specifically aimed at finding out how various societies deal with what psychologists would label as autism and how the individuals themselves relate in their respective social contexts? Is there, perhaps, cross-cultural research that shows that in some cultural contexts, being autistic is not seen as a disadvantage but merely as another variation?
It would also be interesting to have an anthropological look at the above-mentioned autistic culture. As a social movement and as a self-identified culture (who, by the way, actually wrote a “letter to the U.N.”:http://en.wikipedia.org/wiki/Autistic_community#Letter_to_the_United_Nation in an attempt to be recognised as a minority) with a core set of beliefs, they have gone beyond being “subjects” of psychological inquiry and have much to contribute to our understanding of culture and society. It would be even more interesting if the anthropologists who did the research were autistic themselves. After all, as Kathy pointed out in her post:
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.
On that note, I leave you with a passage from Jim Sinclair’s text “Don’t Mourn For Us”:http://web.syr.edu/~jisincla/dontmourn.htm which is quite telling about the relationship between autism and differences of perception:
Yes, that (relating to an autistic person) takes more work than relating to a non-autistic person. But it can be done–unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can’t relate.
13 thoughts on “Autistic Culture: celebrating neurodiversity”
Thank you for this excellent and important post. The intersection between anthropology and “disabilities” is a fascinating (and underutilized) mode of inquiry. In Culture as Disability, McDermott and Varenne examine some of the same questions you raise, although not about the autism spectrum specifically. The Institute for the Study of the Neurologically Typical is a must visit for anyone interested in autistic culture; as someone who could be classified as “NT,” reading the pages on this site was humbling and instructive.
The citation for the male brain is:
Baron-Cohen, S. (2002). The extreme male brain theory of autism. Trends in Cognitive Sciences, 6(6), 248-54.
It’s quite controversial and very interesting to read. I have a 4-year-old son with PDD who is one of the greatest people I know.
Your question about the cross-cultural perceptions of austism is very interesting…something worth looking into for sure.
Thanks for the comments guys. I do think that anthropologists could contribute a lot to the understanding of various phenomena that have until recently been strictly the domain of psychology. The contexts within which psychologists usually study things such as autism, asperger’s and so forth are North American/Western European and I don’t think we should assume that the realities of auties and aspies are the same everywhere.
Jeremy: thanks a lot for the links! I will make sure to look through them.
Patrick: thanks for the reference. I knew I had seen that “male brain” thing somewhere. Not that I agreed with it.
There was a similar move in economics to refer to Autistic Economics and a journal in France follows a line about the mathematical orientation of mainstream economics is autistic.
As to Autistic pride, as a disability issue it goes deeper than gay pride. The presumption that able bodied cognition is understood or correct is what is challenged by Autistic persons claiming an alternate cognition. In a broader sense Disabled Rights has not got it’s arms around Cognitive Rights. That requires serious study of nerudiversity.
This subject is one of my life’s preoccupations, and I am very glad to see more discussion of it in anthropological circles. You might be interested to read several recent posts from my blog, including “Autism as Metaphor and Insult”:http://neurodiversity.com/weblog/article/27/autism-as-metaphor, “Autistic People Speaking About Autism”:http://neurodiversity.com/weblog/article/26/autistic-people-speaking-about-autism, “The Autistic Distinction”:http://neurodiversity.com/weblog/article/34/autistic-distinction, “Autistic Autobiography Online”:http://neurodiversity.com/autobiography.html many of the other link collections at “http://www.neurodiversity.com”:http://www.neurodiversity.com
This subject is one of my preoccupations, and I am very glad to see more discussion of it in anthropological circles. You might be interested to read several recent posts from my blog, including Autism as Metaphor and Insult, Autistic People Speaking About Autism, The Autistic Distinction, Autistic Autobiography Online, Neurodiversity: The Concept, Autistic Advocacy, and many of the other link collections at http://www.neurodiversity.com.
Doyle Saylor wrote:
“There was a similar move in economics to refer to Autistic Economics and a journal in France follows a line about the mathematical orientation of mainstream economics is autistic.”
This got me curious so I googled the term “autistic economics” and found this: http://www.jape.org/jape50_rankin.pdf. The similarity between the above-mentioned analgies is glaring:
“The charge is that (neoclassical)economics as a discipline is unduly detached from the real world. Ratherthan engage in the pursuit of open-minded learning about reality, as othersciences and social sciences purport to do, neoclassical economicswithdraws into an abstract world defined by its own assumptions.”
Regarding: “As to Autistic pride, as a disability issue it goes deeper than gay pride. The presumption that able bodied cognition is understood or correct is what is challenged by Autistic persons claiming an alternate cognition.”
I wouldn’t necessarily say that the movements are exactly the same but I would say that there are parallels between them. For instance, on both parts there is a desire for social recognition that what is regarded by the mainstream as “normal” or “natural” is limiting to many and ignores other ways of being. In the case of queer pride, we’re talking about other ways of being sexual and/or of being gendered. In the case of Autistic Pride, I would imagine that we’re talking about ways of perceiving and/or ways of relating?
One major difference between the movements, I think, is the kinds of resistance that they face. In the case of queers, the main form of resistance is the old “it’s a choice and you will all go to hell for making it” thing. In the case of autism, perhaps the main form of resistance is plain old ignorance and misrepresentation? Or would you say it’s something else instead of or in addition to this?
I’m not sure whether I correctly understand this statement: “In a broader sense Disabled Rights has not got it’s arms around Cognitive Rights.”
So you mean that Disabled Rights in general is mostly geared toward “physical disabilities” and is uninclusive of “cognitive disabilities”?
Thanks for the input!
Thanks for those great links! I’m particularly interested in the move toward the greater inclusion of autistic people in policies about autism. I’ve read about that before and I can imagine the struggle against institutions that somehow think that others would know better than autistic people themselves about what’s best for them.
I’ll be keeping track of this blog.
Wow — I am coming to this one a bit late but right on! A few years ago I saw a research proposal by a linguistic anthropologist who was proposing to observe autistic children as sort of the zero-level of social communication. It was presented in this very common-sensical way that was reminiscent of the way “primitive man” used to be used as a “minus-model” of humanity. that is, if only one could find some test population free of the frou-frou of modernity, civilization, whatever, one could figure out what human beings were basically all about. Here the autistic kids were proposed as just such a “minus model” of humanity: by looking at their putatively stripped-down version of what it is to be a social human being, one could locate some of the (fixed) parameters of humanity. This minus-model is one I think is going to be coming up *a lot* more (deja vu all over again) in studies of people with different kinds of genetic differences. Anthropologists, I agree, are well-positioned (because of their disciplinary history) to point out the problems (moral, logical, evidential, etc.) of these “minus models” as “natural experiments” about what it means to be “fully human”. (whoa, that was loaded with scare quotes — but the prospects are scary!).
So you mean that Disabled Rights in general is mostly geared toward “physical disabilities” and is uninclusive of “cognitive disabilities”?
Yes that is correct. Disability Rights has attempted to address the issue, but the technical problems are difficult to account for. There is a lot of jargon and formulas for describing different sorts of cognitive disabilities. But let’s take some extremes, schizophrenia, and developmental disabilities. Autism in lumped into DD’s (Developmental Disabilities), but deserves to be considered on it’s own.
What does Schizophrenia rights mean in relation to Neurodiversity? With Autism, we sort of know that emotion structure that most ‘able-bodied’ people have is one difference between them and Autistics. The face based transmission of information between parent and child is affected in Autistics in theory. This suggests some way to understand neuro-diversity. And Schizophrenia?
The issue is in my view how Disability Rights might have a big impact upon global culture by opening us up to distinctions only vaguely understood in terms of mental regimes. Another Disability is Dyslexia. Basically, some researchers think that is some ‘impairment’ of motion detection. The importance of this is that vision is dual in nature. Two basically distinct channels with different evolutionary histories. One sees motion the other is tuned to see inanimate landscapes. http://www.bbsonline.org/documents/a/00/00/05/11/
This now appears to be a major symptom of Alzheimers (motion blindness), and in some people with Migraines. What sort of information is being carried cognitively?
When we research cultures, how do we understand these subtle cultural forces in human society? That’s where Disability Rights faces some high obstacles in terms of understanding the ‘cognitive’ rights. But at the same time seems to shed a light upon areas of human development not really seriously considered before.
Going back to Autism. If it is a normal variant, meaning that when language is not the resource most humans use to think with, then all the brain power can shift in other cognitive directions. What does that imply in terms of say a global civilization?
Autism’s Forgotton working past.
It is very hard to believe but Autism has been figured out and the thought process has NEVER been in print before. A group of unadmitted autisitcs ranging in age form teenagers to 80 years old has met online (worldwide internet Anthropology) to discover our double blind experiements in autism have yielded a thought process and a life style not ever in print before. When We think our OPTIC vision is turned OFF (as is the hearing at times) and in effect we think with your daydreams. We convert those day dreams to words speech or actions.
We know each other online by our picture thought ,keen senses ,preferance to be alone and indeed a Pain tolerance. Proficient picture thought we learned on our own by trial and error we seem to be the builiding blocks of traditional thought. Perhaps some day we might be seen as the living missing link in evolution? We have a long way to go however, despite being Autisms BEST functioing population modern Rain Man Autism will not admit to us as we unintentionally deflate the autism of today. Second 95% of us are GLBT and no GLBT population could ever be admitted to in autism circles.
Plese look at the blog http://http://prerainmanautism.blogspot.com for more.
Look up Alan Turing 1912-1953 on the Web to seen old working autism in action! Rich Shull Author Autism Pre Rain Man Autism ,inventor of the Turing Motor a 70 % efficient, green car motor.
Neurodiversity is great and all, but the real question is if this movement is authentic, in regards to their stance on accepting people for who they are on spectrum…how do they explain autism cases like seen on You Tube under “autism self injury” or “autism seizures” or “portrait of autistic student with self injurious behavior” or “autism epidemic out of control” ….why doesn’t the neurodiversity movement talk about this side of autism spectrum disorder? WHY? There is something very very wrong with the fact they don’t.
Wouldn’t it be for for the same reason that people either invoke or deny claims of ethnicity, often switching ethnic identities throughout the day, similar to code switching.
Such things most like have more to do with how they align themselves with individuals’ “projects” (Otner’s term), than with any mutually agreed upon reality. Such things are “authentic” if someone says it is, just like anything else. Psychologists will usually tell you that mental disorder categories are simply arbitrary categories on a sliding scale. So, the distinction of who is in and out depends more on whether a psychiatrist is a lumper or a splitter, and whether any autistic individual either helps or hurts any other’s agenda.
This is actually testable using regression techniques. Maybe, someone should do it.
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