China's autism parents walk lonely road for help

BEIJING Wed Apr 1, 2009 4:09am EDT

1 of 6. An autistic child reacts during a therapy session at the Stars and Rain School for autistic children in Beijing March 23, 2009.

Credit: Reuters/Jason Lee

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BEIJING (Reuters) - When Li Mingqiu was two, his parents noticed that he had lost the ability to speak, didn't respond to his name, and was fixated by television commercials.

Even though the hospital gave him a clean bill of health, his mother was convinced there was something wrong. After exhaustive research on the Internet, she came up with the answer: autism.

For decades, autism went largely undiagnosed in China even as in the West awareness was growing of the condition. China only recognized autism as a disability in 2006.

"Autism is very unknown in China. If you ask people on the street, 90 percent of them have never heard of it," said Tian Huiping, the founder of China's pioneering school for autism, Stars and Rain, in the suburbs of Beijing.

Mingqiu is one of China's luckier children because he was diagnosed early. By the time many autistic children arrive at the special schools springing up across China, they are too old for therapy that might give them some semblance of a normal life.

"The only way we know to improve the prognosis is early intervention. That's what makes early diagnosis so important. The earlier, the better," said Li-Ching Lee, an epidemiologist at Johns Hopkins University Bloomberg School of Public Health.

In the West, autism and related disorders strike between two and six of every 1,000 children, or one in every 166 children. With China's enormous population, that means at least 2.6 million people might have autism, although there is no conclusive data.

"There are a lot of resources and expertise concentrated in Beijing, but it takes a lot for families to travel here, financially," said Lee, who is developing screening tests for the disorder.

"The facilities for education are here but not in the provinces. Where I work in Shandong, there are no education and treatment facilities specifically for autism."

A lack of proper diagnostic tools in Chinese and various cultural factors such as the inability of parents to compare development milestones against siblings due to the one-child policy are among the factors inhibiting diagnosis.

Autism is a developmental disorder which appears in the first few years of life and affects the brain's development of social and communication skills. The exact causes of autism are unknown but there is extensive research underway.

Chinese parents, most of whom have only one child, have founded schools and associations to deal with autism because of the dearth of state support.

China's rudimentary social services mean that parents often rely on children to take care of them in their old age. But parents of autistic children may instead find themselves trying to support their autistic child in their old age as there are no programs or facilities for teens or adults with the disorder.

"For a family where the child is disabled, the future is very, very dark," said Tian, whose adult son is autistic.

GRASSROOTS COPING

China now has about 100 preschools for autistic children, many of them run by NGOs that send their teachers to Stars and Rain to learn from its model. Most teaching materials are sourced from overseas, then translated into Chinese.

"It takes a long time to train people," Lee said. "A lot of people here work very hard to make this happen."

Awareness is growing. In Guangzhou, NGOs mark World Autism Day on April 2 with events to share education tips with parents of autistic children.

Some provinces have also begun to set up state-backed schools, in a sign that autism, known in Chinese as "lonely syndrome," is finally getting recognition.

Families come to Stars and Rain for an 11-week course on social skills for the children and coping skills for the parents.

With cartoons painted on walls and the shouts of children at play, the center is filled with the hubbub of any kindergarten.

In the playground, children in a relay race show no signs of trying to run fastest as they orbit a chair and drift back to their teams. But they have learned to take turns, to pass the baton, and to respond to verbal commands, and their cheering parents looked relieved.

"Now, the fifth week of class, is the best time, because the parents see their kids' progress, and feel confident," Tian said.

"Two or three weeks more, and they will worry again about the future, and what will happen when they are dead."

In 1986, Tian left her infant son for a coveted opportunity to study abroad for two years in Germany. When she returned, he had developed the first signs of autism, a condition that only three doctors in China could diagnose at the time.

Frantic to help him, Tian quit her job as a professor to found Stars and Rain in 1993, when the boy was eight.

"I never believed that if I just made a lot of money I could get him the security and respect he needed. He will only be safe when all the children like him are secure and respected," said Tian, a petite woman.

Many parents have no resources to draw on for help outside their family, and many are riven by the shame and the stress.

"When I started here in 2004, most of the parents wouldn't tell anyone they had this problem," said Wang Peipei, at the school's development department.

"Now more and more are open about telling people, pressing for their kid's rights and for more help, but society still isn't very aware of autism."

Seven-year old Shao Zhennan, a handsome boy with a big smile and bright eyes who couldn't speak or distinguish colors when he first came to the school, plays peek-a-boo from across the room before mustering the courage to approach and say hello.

"He wants to communicate with you but he doesn't know how," said his mother, Sun Yanhong.

(Editing by Megan Goldin)

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