Autism as a ‘culture-bound syndrome’
While thinking about anthropological approaches to health and illness, here is a piece of the cross-cultural understandings of what we in the West call ‘autism’.
Although autism was first defined and described in 1934, it took 40 years for it to be officially recognized by the American Psychiatric Association as a disorder other than childhood psychosis. In France, as recently as 2004, autism was seen as a form of schizophrenia rather than a developmental disorder. Today in South Korea, children with autism are frequently diagnosed with a condition called Reactive Attachment Disorder — often associated with child neglect — while among the Efe pygmies in Central Africa, a child who begins exhibiting autistic behaviour is understood to be under attack by the family’s ancestors and is sent to another village far away where he will not have contact with blood relatives.
These are some of the startling facts gleaned from Unstrange Minds: Remapping the World of Autism, by Roy Richard Grinker, professor of anthropology and director of the George Washington Institute of Ethnographic Research. Grinker’s interest in the disorder is professional as well as personal. His daughter Isabel was diagnosed in 1994, and his warmth and compassion for autistic children and parents alike shines through this immensely readable and informative narrative that looks closely at how culture influences the ways we understand, classify and treat autistic-spectrum disorders.
I read this article a while ago but it came back to me in a flash when I heard that the Korean perpetrator of the Virginia Tech massacre was diagnosed with autism, but only after he migrated to the USA. Seems that his personality was otherwise characterised in the Korean context — I wonder if he was diagnosed with ‘Reactive Attachment Disorder’? What I find interesting here is that the different understandings of a particular cluster of behaviours reveals cultural differences between different scientific traditions; the supposedly universal discourses of science prove to be culturally relative after all.
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Quite a lot of contemporary ethnography deals with the ‘cultural construction’ of accepted Western psychiatric categories. In that sense the cultural variability of meanings attached to forms of diability or behaviours which would attract a label of autism in the West (if I can use such a gross term) is not very surprising. But it is fascinating.
Recently the first report attempting to estimate the number of Australians with an autism spectrum disorder has been completed (March 2007). The estimate is one in 160 Australians. The numbers of individuals diagnosed with autism has grown alarmingly, even in the last five years. Much debate exists in the ‘autism community’ (of which I am a member, ie a carer) as to whether the elasticity of this category has increased, the rates of diagnosis have simply improved through early intervention or there really is a ‘silent epidemic’.
I would be really interested to hear of anyones experience of autism during fieldwork. It may help to know that autism is characterised by a triad of impairments: difficulties in communication (including limited speech or no speech); difficulties in social interaction and obsessive or repetitive behaviour. A common autistic trait is pervasive anxiety and another one is a set of sensory ‘oddities’ – oversensitivity and undersensitivity. My son, for example, is very sensitive to loud noises and has an enhanced sense of smell.
Im currently working on an ethnography of autism in Sydney (parent experiences of diagnosis and early intervention).
Difficulties in communication, social interaction, obsessive behaviour or oversensitivity etc may not always the signs of autism. Classifiying every little difference as a medical problem and putting such people into institutions is an important characteristic of the modernity and modern culture. It reminds me of the great New Zealand writer Janet Frame, who is known for her shyness and humility. She was born in 1924. She worked as a teacher, and one day while she was teaching she had a panick attack in the classroom and had to leave. In 1947 she was diagnosed with schizophrenia (today she would have diagnosied with autism), and had to stay in mental institutions and have many shock treatments for eight years. She published her first book in a mental hospital, got a literary prize, and after that she was released. Later on a psychologist described her as someone who is sane but a quiet person who likes to be on her own unlike many other people.
Many people are making this connection. If you are interested in a cross cultural assessment of autism then I would recommend the recent book by Roy Grinker on autism
Best wishes
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Thanks mcewen. Do you mean that same Grinker book that was mentioned in the original post, Unstrange Minds? Or another book?
Rose, thanks for a great comment. Do you have any thoughts on the validity of the different explanations for the increase in diagnoses of autism? And where does one draw the line? Are there clear categorical distinctions that can be made? I’ve always had the impression that ‘autism’ is one of those syndromes where there seems to be a continuum between those individuals functioning within the ‘normal’ spectrum and those for whom the condition is considered to be pathological. Many academics, for example, have qualities that seem close to autism 😉 I remember reading Oliver Sacks’ case studies of high-functioning autistic individuals in An Anthropologist on Mars. They often found academic work, or work with animals, appealing as it was possible for them to avoid the intricacies of interpersonal interactions most of the time.
I’d also be interested to hear more about your fieldwork. If you would like to post something here on the blog you would be more than welcome.
I wonder if introversion could be mixed with the ‘normal’ spectrum of Autism. I think you can find autistic traits in most people. I worked as an early intervention therapist with 3-5 year old children with Autism a few years ago and found that I started to see mild traits of autism in everyone. Allot of people have little routines for example a morning routine, that when deviated from they will feel like their day has got off to a bad start or just feel uneasy as though they have forgotten something. Nervous habits like nail biting are similar to stims in Autism as well. I wonder where the line actually is between “normal” and “autistic”. There is a great book written by a woman with Autism where she describes seeing a window display and finding it so appealing that she wanted to lick the glass of the window and so she did. A sort of impulsive sensory reaction, like people that go through a department store and have to touch everything…I’m not saying everyone is autistic, I am just considering the possibility that many more people display possible autistic traits that would not be diagnosed as autistic individuals.
I am a graduate student at UC Berkeley and I’m working on an ethnography of Autism here in the Bay Area. I would be interested in connecting with Rose Lilley (who is working on one in Sydney). Please feel free to email me at lashayla (at) berkeley (dot) edu.
My interest in Autism developed through my work with children and families. I returned to graduate school after working in the field of early autism intervention because I became interested in the socio-cultural construction of Autism, how it is constructed through the language of the diagnosis, the intervention… etc. Also, I’ve become interested in how it’s a “disorder” that has been constantly recreated as we learn more about people’s individual experiences, and as we become more informed about the “science” of human behavior and cognition.
I would be very interested to communicate further on this topic, anybody who wants to e-mail me: de_clerck_cindy@hotmail.com.
i am currently doing ethnography in Beijing China on recognition and awareness issues of families with autistic children…
I am a graduate student at Teacher College, Columbia University and am also interested in doing ethnographic work on individuals with Autism – probably first in the New York area, and then hopefully cross-culturally. Please let me know if you’d like to communicate further. You all seem to have wonderful ideas.
The culture you live in determines where the line between “Autistic” and “normal” is (and likely not just a line on a 1-dimensional spectrum but a line that may vary for a number of subtraits).
I read somewhere that in a survey they found the smallest percentage of diagnosis in the German-speaking part of Switzerland and the highest in Japan.
Germans-Science(esp. Switzerland), engineering, and a language that is typically spoken in a very clear way compared to most other languages.
Japanese-Highly elaborate sets of unspoken social rules that people take very seriously. Very conformist and group-centered. Sometimes the pressure even leads to a condition called “hikikimori” where an individual feels so much like they don’t belong or aren’t living up to expectations that they drop out of society. This isn’t considered autism as it comes at later ages, not so much a lack of social skills but reaching an extreme “there’s no point” conclusion about socializing because of one’s experiences in society. Although they still have the highest rate of autism as well.
Doesn’t look like a coincidence. I have Asperger’s and have given a lot of thought to the subject of culture and realized had I been born in a German country or even just anywhere in western Europe I probably wouldn’t have many social problems at all. Why am I autistic? Simple, I grew up in a culture where socializing is highly superficial(ex: people take you as unpleasant if you don’t always smile, I think smiling all the time cheapens its value, and people never answer “bad” to “how are you?”), unnecessarily loud(as people keep trying to be louder more and more as the years go on, as influenced by the loud commercials and ads we have everywhere, meaning more stimulation and lowering the threshold for the development of oversensitivity problems), and where the slightest criticism is taken as rudeness(which I even internalized for a great deal of my life and that certainly was no help at all) and intellectuals are frequently bashed by the media and called arrogant. It doesn’t help that my favorite subject is politics, something you’d think would help with social skills, but here politics is marred by apathy and stupidity so I’m S.O.L. If there is significant clash between one’s own personality and the culture around oneself that makes it harder to pick up on social skills during childhood as you get less practice when you get shunned by your peers. That autism can be seen even in infants is not evidence against this as the culture will be reflected even with the parents. My guess is that if it wasn’t for my parents being reasonably intelligent I may have even been nonverbal at first, because it would’ve been hard to bond with them. Instead it was just harder to bond with peers. My country has simply become so badly off intellectually that intelligence is a direct barrier to learning social skills(because there aren’t that many intelligent people here to communicate with).
I’m not discounting genetics. Genetic difference is the reason why I get it and other Americans don’t. Cultural differences is why I get it but someone with a similar brain and genetics in Germany or Switzerland would probably have been fine.