Sinister silence

When Li Mingqiu was 2, 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, a brain disorder which appears early in life and affects a child's social and communication skills.

"Autism is very unknown in China. If you ask people on the street, 90 percent of them have never heard of it," says Tian Huiping, founder of China's pioneering school for autism, Stars and Rain, located 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," says 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 might have a large number of autism cases, 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," says 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 are among the factors inhibiting diagnosis. The exact causes of autism are unknown but there is extensive research underway.

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

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 says. "A lot of people here work very hard to make this happen."

Awareness is growing. In Guangzhou, NGOs marked 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 says.

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 8.

"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," says Tian, a petite woman.

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

"When I started here in 2004, most of the parents wouldn't tell anyone they had this problem," says 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," says his mother, Sun Yanhong.

Reuters

(China Daily 04/06/2009 page8)