Autism in China
January 12, 2008 by Kristina Chew, PhD
Filed under Health
自閉症, zi bi zheng (formed of the three words “self,” shut/close,” “obstruction”) is the Mandarin for “autism,” with the suggestion that it is a condition in which the self is withdrawn, shut and closed up in itself. A January 9th Wall Street Journal article profiles the efforts of Ma Chen to create and fund a school and other efforts to help autistic children (thanks to Mike Stanton at Action for Autism for highlighting this). Ma’s daughter, Yu Miao, was born in 2000 and has autism. The China Disabled Persons’ Federation estimates that 104,000 children in China have learning disabilities, mostly autism, but the number is probably higher.
There are few schools for autistic children in China: Go here to read about the Kangda Training Center in Zhengzhou and here to read about autism centers in Shanghai. The Wall Street Journal recounts Ma’s patient and persistent efforts over three years to get government approval for a school for autistic children, the “Carnation Children’s Rehabilitation Center” in Hangzhou. The Center was first funded by Ma and her husband selling their apartment and emptying out their savings; slowly, private donations have been made, and teachers recruited. Ma has opened up two more schools, one in Taizhou and one in her own hometown and finding enough funds to keep them open is a major struggle.
Her schools, and others like them, get no government money. They survive by charging between $200 and $300 in monthly tuition. It is a staggering amount for China, even in wealthy provinces like Zhejiang, where the annual per-capita income for urban residents in 2006 was $2,400.
A few poor parents are given free tuition, but even middle-class families can’t afford more than a few months of classes. Typically, a family enrolls a child for several months and one family member comes to learn how to communicate better with the child. Family members learn how to stop the children from hurting themselves and help them express themselves so they feel less frustrated.
The parents also learn that their child isn’t being naughty — and, hopefully, to stop beating their child, still a common reaction to an autistic child. Some dream their child will learn to read and write and join a regular elementary school. But most can afford classes just long enough to deal with the child’s most pressing problems.
The day after arriving in Taizhou, Ms. Ma and her backers met at the school. As they prepared to hold a training session, Ms. Lu surveyed the 20 teachers and whispered to Ms. Ma: “There are too many teachers here. You only have 26 children. You’ll go bankrupt.”
Her schools lose about $10,000 a year. But Ms. Ma has little choice. China, a nation of 1.3 billion, trains fewer than 100 special-education teachers each year. This year, a class of 30, specialized in autism, graduated. The rest are trained in education for the blind, deaf and those with other impairments. Ms. Ma tries to hire the specialists but their numbers are so limited that she has to train most of her teachers. She trains teachers for six months. Even then, they still can’t handle more than one or two autistic children at a time, she says.
So the schooling has to be especially intensive. The bottom line: Ms. Ma’s schools have about a one-to-one student-teacher ratio, making it almost impossible to break even.
The Wall Street Journal comments, to a lesser extent, on how autism is understood in China.
In China, as in many developing countries, disabilities like autism were long ignored or considered taboo. According to traditional views, birth defects were a sign that parents hadn’t lived a virtuous life. Some mentally disabled people found work in the fields, but often were shut in to spare the clan a loss of face.
Researchers from the Johns Hopkins Bloomberg School of Public Health are conducting a population-based epidemiologic pilot study in China to screen for autism in children. At last year’s Institutional Meeting for Autism Research (IMFAR), they reported that they will need to culturally modify Western-developed tools in China and also to modify them according to geographic region: There is no difference between “he” and “she” in Chinese and some gestures, such as pointing, are considered culturally inappropriate and are suppressed.
Anna Wang, who emigrated to California from China and has a teenage autistic son, notes that “’There’s this cultural stigma that you must have been sinful to have a child like this……You must have eaten something wrong when you were pregnant.’” Wang and her husband, Albert, started the Friends of Children with Special Needs Dream Center in Fremont, California, some ten years ago. The Center is described as a “‘village’ where friends transform into family who look out for the group — especially each other’s kids”; it is located next to a number of brand-new apartments that are a supported living environment for developmentally disabled adults. In China, Ma Chen is thinking ahead to the future and, along with other parents, seeks to turn an overgrown field into a working farm, “’so my daughter will have a place to live when we’re dead.” And I very much share Ma’s worry about where my own child will be when Jim and I are gone.
I’m personally interested in learning about autism in China as I’m third-generation Chinese on both sides of my family (all of my immediate relatives now live in the US). And, I am very curious about how autism is understood—diagnosed and perceived—-in China. For instance, in Chinese culture, a lack of gestures and wanting to be quiet and alone are considered socially desirable behaviors in young children. When I look back to Charlie’s first year—-Charlie had few gestures and was quiet and content to be by himself—-I wonder if some of these cultural attitudes were unconsciously at work in me. My native language is English but I’ve studied Mandarin and, to a much lesser extent, Cantonese, but I have also wondered if my knowing Chinese, which is a tonal language, has helped me to better figure out Charlie’s sometimes less-than-clear utterances.
(And the gluten-free casein-free diet seems a lot less daunting if you’re used to rice in its various forms as the main staple on the table.)
I was sitting next to a Chinese guy on the train today, who was speaking into his mobile phone.
I assume he was speaking Cantonese. Having heard that Chinese is a largely tonal language, for the most part in listening to the sounds I did not detect a greater range of tones than I hear in English, the only sound I did hear that I would consider awkward for me to produce was what sounded to me like a urr sound which everytime it cropped up seemed very incongrous with the rest of the vowel sounds. More like a bit of West country burr had snook in. Since I have problems with my r’s (not good when your name is Larry Arnold I frequently have to spell it on the phone) it’s not a sound I can readily make (had trouble with the “non je ne rrrrregrrrrete rrrrien r learning French too)
I would actually suspect that if one has some degree of speech impediment the language one speaks might make the effect of that worse or less depending on how much the sound you have difficulty with is essential in conveying phonetic distinction between words
100 spec. ed. teachers trained a year? Good grief.
“And, I am very curious about how autism is understood—diagnosed and perceived—-in China.”
I think Dr. Grinker would probably be the fellow to ask about that, or so I would guess.
“they reported that they will need to culturally modify Western-developed tools in China and also to modify them according to geographic region”
From my very first readings of the DSM and ICD I have always been struck by how culturally biased the diagnostic criteria were. I’m glad people are finally looking at autism in the context of different cultures.
I would actually suspect that if one has some degree of speech impediment the language one speaks might make the effect of that worse or less depending on how much the sound you have difficulty with is essential in conveying phonetic distinction between words
One of my boys cycled through all sorts of sounds when he babbled as a baby. The ones he was best at were not sounds common to English. Hubby and I sometimes joke that if we spoke something other than English as a native he wouldn’t have such a hard time with developing his speach.
Samantha, our son has a sound he makes that seems almost impossible for me: zzzzzzzt, or something like that. What would that be? French (like zut alors!)?
I’ve always thought the criteria were very Westernized, but…well, I guess that’s to be expected given their provenance.
“Hubby and I sometimes joke that if we spoke something other than English as a native he wouldn’t have such a hard time with developing his speech.”
I’ve wondered at this with my son, who is very attentive to musical pitch, rhythm, and melody. Perhaps a language that relied more on these for linguistic distinction would have been somewhat easier for him to understand—but I speculate!
@Larry, there’s also /ng/ sounds—-ngaw is “I” (it’s pronounced like waah in Mandarin).
I am minded of something I saw on a white-supremacist site; that racial differences are not only intellectual, but have to do with character and social relationships.
The point the guy tried to make, was (truncating and paraphrasing a whole bunch) that the Bantu are too rowdy to get along in civilized society, the Han are too tame to resist oppressive government, and we white nordic folks are, as Goldilocks would have it, just right.
Snork.
Oh, on racial differences? The external appearance has only to do with esthetics; it’s the part between the ears which counts. The AKC has encouraged breeding for appearance in dogs for years, and produced some really bad, scary, good-looking dogs.
I remember a woman who picked her husband for their handsomeness, and had to put up with their bullitude and good-for-nothingness.
Breed for behavior, dammit!
Sometimes I think we were better off when our marriages were arranged by our parents
Umm, that’s “husbands”, plural. Yep, she had several, they were good-lookin, and they were mean to her and abandoned her.
hi Kristina,
My name is Whitney Hoffman, and I run the LD Podcast. I have started a ChipIn campaign to try to raise money for Ma Chen, a mother of an autistic daughter in China, who has started a school for autistic children. Her story was highlighted in the Wall Street Journal recently, and she is looking for funds to try to buy a farm, so the children will have a place to go and something to do to support themselves after they finish school. With no real social safety net in China, without this sort of program, the future of these children is uncertain at best.
I think all of us moms can make a difference. I would love to enlist your support, and if you feel comfortable, to reach out to your community as well. With small donations, many of which have been in the $5 to $20 range so far, we’ve already raised over $500 to date, in the past week.
For the $10,000 US this farm will cost, whatever money we can raise in the next 60 days will go a long way to making a long term impact on the lives of autistic children in China.
the link to the chipin page can be found here:
http://ldpodcast.chipin.com/ma-chen-autism-school-in-china
Thank you so much for what you are doing, the support others find through your blog, and for considering this request.
Whitney Hoffman
The LD Podcast
http://www.ldpodcast.com
ldpodcast (at) gmail.com
This is all really interesting. I have been thinking of conducting a study into Autism in tonal languages but my prediction would have been that due to the (often) mono-tone nature of speech in people with ASD comprehension might be reduced and interaction made more difficult. I never considered the musical perspective. Anyone got any more information on this?
Thanks