Well Being

Autism Is Global

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themeday.gif Autism is everywhere—–by which I do not mean that, this being April and therefore Autism Awareness Month, we are hearing about autism—what it is and what to do about it—-everytime one turns around, gets on the internet, watches a popular TV show. By “autism is everywhere,” I mean that autism is a global phenomenon. Even though “most experts would……agree that nearly all their knowledge about autism spectrum disorders is based on research in North America and the United Kingdom and that little is known about autism in other parts of the world,” it is indeed the case that “autism is a brain disorder that can affect anyone in any culture”; countries like China and India—countries with huge populations—-are just starting to use “the category of autism as a medical diagnosis” and to “count their cases.”

These statements are from the introduction of anthropologist and autism parent Roy Richard Grinker's Unstrange Minds: Remapping the World of Autism. When the book first came out in January of this year, much was made of Grinker's argument for why there is no epidemic of autism, in articles in US News and World Report, Time Magazine, and elsewhere (a recent interview with Grinker appears in the April Smithsonian Magazine) . Culture figures into Grinker's argument: The first half of Unstrange Minds shows how the medical, scientific, health care, educational, and philanthropic communities of the United States have come together (knowingly or unknowingly) “in concert” to [raise] the visibility of autism and [make] it a cause worth fighting for” (p. 171). Key to the rising prevalence of autism—-now in 1 in 150 according to the most recent figures from the Center for Diseases and Control—-is the change in the diagnostic criteria for autism, and for our growing understanding of how to identify autism.

The second half of Unstrange Minds also considers culture, or rather cultures, as Grinker describes his study of autism in India, South Korea, and South Africa, and his meetings with families in these countries. Might it be the case, Grinker writes, that “certain cultural conditions help people with autism improve their ability to learn, communicate, and participate in social and economic life” (p. 11)—-might how other countries understand autism and seek to treat autistic persons teach us here in the US something?

The global perspective of autism in Unstrange Minds has been of particular personal importance to me. I am Chinese American; my grandparents on both sides emigrated from southern China (Toisan county) in the early 20th century and settled in northern California. While my father is a University of California-trained pharmacist, I grew up thinking about illness not only according to the dictates of Western medicine. I was just as likely to take medicine to control my asthma as I was required to drink bowls of herbal soup made by my grandmother, Ngin-Ngin. My parents (both of whom were born and college-educated in the US) were just as likely to take out the stethoscope to check my breathing as they were to talk about certain foods as too “hot” and “dry,” and me needing to eat something more leng (“cool”) to balance things out. (Bowls of dong gua—winter melon—soup are leng, fried food and citrus fruits are not, per my parents.)

Ever since Charlie was diagnosed with autism back in 1999, I have wondered on and off: What would it have been like for him to have been born in China? What would have happened? I have speculated about whether it might be easier for Charlie to have had to learn Chinese, a tonal language; Jim and I found a special spirit of community at an autism center founded by Chinese American families in Fremont, California.

I do not mean to say that one culture is “better” than another in its view of autistic persons; rather, I find it more than enlightening to see how autism is understood in other cultures. (Thanks to this blog and my Autismland blog, I have been in communication with parents from other countries including Argentina and Singapore, and have learned more than much from them.) At the risk of sounding cynical, autism is becoming something of an industry here in the US—-it is both wonderful to know about all the teachers, therapists, lawyers, doctors, and many more professionals who “specialize” in autism but I wonder sometimes if we are approaching “autism expert overload”—but that still and most certainly does not mean “the answers” are here. Grinker writes in his final chapter, “Beyond the Curve”:

Sometimes in the panic of the “epidemic” we forget how lucky we are in North America—lucky to have a label that doesn't stigmatize the way it used to………..

………a Peruvian man named Julio, at thirty-two, is an assistant to Lily Mayo [who directs an autism treatment and education facility, the Anne Sullivan Center, in Lima, Peru]. He has understood the symptoms of autism since he was a teenager, and he's incredibly bright and perceptive. When terrorists were active in Lima during the 1980s, Lily depended on Julio. Water and electricity were scarce commodities and had to be closely monitored and turned off and on at regular intervals. Julio was in charge because he was the only person obsessive enough to be consistent at the tasks. Because he was treated with respect, he became comfortable with his diagnosis.
Lily Mayo is convinced that Julio's job lessened the severity of his autism and that this experience is a lesson for us all. ……. the World Health Organization found … that the symptoms of people disabled by schizophrenia in rural areas were more benign than those experienced by people with schizophrenia in urban areas because the former could play an important economic and social role, even if it was simply plowing a field or herding sheep. And Julio's case shows that we in order to help people with autism, we don't always need to fully mainstream them, or pretend that they are not different, and we don't need to simply reduce stigma. Rather, we need to provide roles in our communities for people with autism, some of which they may, in fact, be able to perform better than anyone else, just like Julio. (pp. 289-291)

We need to make a place in our communities for people with autism—to change society, to change ourselves, rather than insisting that the autistic person has to change and “fit into” mainstream society.

Here are some websites about autism around the globe (special thanks to Kathleen Seidel); please let me know about any others, too.