SchaferAutismReport: In China, Grass-Roots Groups Stretch Limits on Activism

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Monday, January 14, 2008 Reader Supported Vol. 12 No. 9p

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ADVOCACYIn China, Grass-Roots Groups Stretch Limits on Activism

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PEOPLEKentucky Monthly Magazine's "Kentuckian of the Year"

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Mother: Killed Autistic Daughter To 'Fix' Her

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EDUCATIONWisconsin School Districts Adjusting To Rise In Number of Autistic Students

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MEDIAThe Autism Perspective Magazine Has Gone "Green"

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Recovery or Risk?

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EVENTSDr. Amy Yasko at International Autism Conference

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DEADLINE For February Autism Events CalendarFriday - January 25 !Submit listing here free! JANUARY CALENDAR of EVENTS!ADVOCACYIn China, Grass-Roots Groups Stretch Limits on Activism A Mother Leads Quest To School Autistic Kids; Selling the Family Home By Ian in the Wall Street Journal, January 9, 2008; Page A1. tinyurl.com/2koyd7 Taizhou, China -- For nearly two years, Ma Chen and a group of her friends have run a volunteer effort to help children with autism. They opened three schools, raised $200,000 and brought in outside experts. Now the 35-year-old mother of an autistic girl wants to turn an overgrown plot of land into a working farm for the children when they grow up. "We need to grow in size," says Ms. Ma, as she tramps through a tangle of orange trees and creeping vines. But her ambitious goals will require a bigger, better-organized charity -- and that is propelling her into delicate territory. She is part of a grass-roots movement that is testing China's tolerance of groups that operate independent of official supervision. The outcome has important implications for China. Independent centers of power, such as charities and advocacy groups, have begun popping up here in response to social problems. Beijing is gradually permitting nongovernmental organizations, but it restricts their scope. The country's leadership worries that too much civil society could stir up conflict, challenge its grip and put at risk the stability that has underpinned 25 years of fast economic growth. Ms. Ma's group has been helped by state policies that for the first time recognize intellectual disabilities as a problem. This was highlighted in October, when Chinese President Hu Jintao attended the Special Olympics in Shanghai. Ms. Ma, a long-haired woman who wears granny glasses perched on the end of her nose, isn't comfortable being pegged a social activist. Her real interest is engineering. She and her husband met at university, where they studied underwater acoustics. They married and got jobs at a defense contractor in Hangzhou, a tourist center of 4 million known for its scenic West Lake and green-tea plantations. In 2000, their daughter, Miao, was born. But after two years, Miao seemed unable to interact with people. She could say only a few words and threw tantrums, hitting herself violently. The family went from hospital to hospital and finally found one able to make the diagnosis: autism. Autism is a neurological disorder that affects the ability to communicate and interact. It can include severely restricted and repetitive behavior, as well as milder disorders such as Asperger's syndrome. Those severely afflicted need help in most aspects of daily life. The China Disabled Persons' Federation estimates that 104,000 children in China have learning disabilities, mostly autism, but based on surveys in other countries, the number is probably many times higher. 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. That has led to a dearth of knowledge on the condition. After Miao was diagnosed, Ms. Ma couldn't get an answer on what autism was or how to treat it. So she went online and discovered two schools for autistic children, one in Beijing and one in Qingdao. Ms. Ma quit her job and spent a year taking Miao to the two schools and to numerous private workshops the family paid for out of pocket. She soon found that mainstream schools didn't allow even marginally autistic children, who often have short attention spans and need more intensive teaching. She decided she'd have to start her own school. In 2003, she went to register it with the government-run China Disabled Persons' Federation. It controls which charities for the disabled may be legally established. The federation was founded to aid the physically challenged and only slowly championed the intellectually disabled. When Ms. Ma tried to register her school as a nonprofit, the federation said autism wasn't a recognized illness. Unable to operate legally, she closed her school. Three years later, she reapplied. By then, autism was a recognized disorder. Although the federation had plans to set up its own schools for autism, officials said they could accept private outfits getting involved with teaching the disabled. In 2006, the federation's Hangzhou branch approved Ms. Ma's "Carnation Children's Rehabilitation Center." Then came the next problem: money. To get the school off the ground, the family took drastic measures. They sold their apartment and emptied their savings -- in all, a loss of $100,000 in assets. The family now lives in a sparsely furnished rental in a grimy part of Hangzhou, without a car, stereo or any of the status symbols of China's middle class. Ms. Ma's situation is typical of parents with autistic children, says Theresa Lu, a retired expert on autism from Taiwan who donates her time at schools in China. "These schools are so fragile," Ms. Lu says. "I have seen so many go out of business. The parents just sell everything they have to pay for the schools until they run out of money and energy. Then they close." Ms. Ma, however, began to tap into China's new prosperity. The country's economic rise has created tremendous wealth, but few outlets for charity. A handful of official charities exist, but are widely seen as arms of the government and excite little passion. Without a legal framework to allow private charities, philanthropy in China has been stunted. So when Ms. Ma's quest spread by word of mouth, something unusual happened: Parents in Hangzhou, even some without autistic children, stepped forward. "I just thought that here was something that needed our help," says Xu Wei, a 38-year-old housewife whose husband works for Hitachi Medical Corp. Their daughter isn't autistic, but Ms. Xu says her heart broke when she saw the children with no place to go. "It is something different to do, something with meaning." Ms. Xu's family and three other families donated about $30,000 each, a large contribution by Chinese standards. They also gave their time; Ms. Xu, for example, is a former bank accountant who now handles the school's books. Buoyed by their support, Ms. Ma began to recruit teachers. Parents of other children with autism began to turn to her, hoping they'd get a better education for their children. The disabled persons' federation is starting its own schools, but runs them for profit and so has higher student-teacher ratios. Ms. Ma's school opened in April 2006. Soon after, she opened a second school, in Taizhou, and then last August, another one in her hometown. Enrollment fluctuates, but there are usually a total of about 100 students. In October, Ms. Ma and her backers gathered to hold an unofficial board meeting in Taizhou and to survey the farm for sale. They timed their visit to coincide with a training class for teachers at the Taizhou school held by Ms. Lu, the Taiwanese volunteer. The 72-year-old spends several months a year traveling to mainland China to train teachers and parents. Without a car, Ms. Ma and Miao made their way to Taizhou by bus. Ms. Ma worried for days about the four-hour trip. Like many autistic children, 7-year-old Miao dislikes enclosed spaces and can have fits of anger when cooped up. So Ms. Ma talked carefully to Miao about the trip, warning her what lay ahead. During the ride she stroked Miao, whispered encouragement, pointed to things outside and played games with her.+ Read more: tinyurl.com/2koyd7 (Thanks to B. Fishkin.)

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