In China, lack of developed support network adds to burden of parents with autistic children

From first part of Xinhua story:

BEIJING -- Lack of developed support network adds to parents' burden, He Na reports in Qingdao, Shandong province.

Most people would be upset if you thought they looked 10 years older than their real age. Wang Yonglin, 35, has learned to smile and say he's used to it.

Once an energetic, sports-minded man, Wang is thin and looks tired. He has a few gray hairs. The changes began in 2009.

"I found my daughter was different from other kids," said Wang, who lives in Qingdao, in East China's Shandong province.

"She was easily irritated or annoyed, often murmured to herself, didn't like talking and paying attention to others. She did not like watching cartoons, but was only interested in the weather forecast."

Realizing that her behavior was not just quirky, Wang and his wife, Li Ping, took their daughter to a nearby hospital for tests.

The results of a series of examinations, including an intelligence test, eventually showed that their daughter was autistic.

The term refers to people who appear withdrawn from the outside world, who are self-absorbed and do not communicate with others. It covers a wide range of behavior and severity.

"Autism? I hadn't heard of the word before. And the doctor said straight-out that we needed to be mentally ready to accept that fact, because children who have autism will have it all their lives and there is no cure at present," Wang said.

Though he held the test results in his hands that day, he still hoped the doctor had been wrong. When daughter Jia Jia gets older, he thought, the situation can be better. But it has been more than two years, and there's been no improvement.

"I sent her to primary school, and the teacher complained that my daughter was seldom listening during class and was always looking down and playing with the little gadget in her hands," he said. The day's gadget could be anything - a pencil, a watch, a scoop.

Last month, they took Jia Jia, who is now 6, to Qingdao Children's Hospital on the chance she had recovered or that the original diagnosis was wrong. The result tore his hope to shreds.

"I felt my world collapse," said Wang, a former nonsmoker who now goes through two packs a day.

Wang and Li often feel hopeless, he said. They cannot sleep through an entire night and have even thought of suicide. "We gave up the idea finally, for who will take care of her if my wife and I die?

"You know, the most difficult thing is you have tried your best, but still can't see any hope. And even without hope, you still have to smile to face an innocent daughter every day."

Doctors suggested that Jia Jia is still young enough that some improvement is possible, so Wang and Li have sent her to a specialized school for language and basic behavior training.

"I do not expect too much for her future," Wang said, "but do wish she will be able to take care of herself when we are too old to look after her."

Feeling marooned

The couple thought they were the unluckiest people, stranded alone in the world with such a problem, but there are millions like them. The World Health Organization estimates that China has at least 1 million children with autism.

And autism is ranked No 1 among mental disorders in China, according to a presentation on Nov 4 at the International Autism Research Collaboration Development Conference in Shanghai. The data include only diagnoses in hospitals and research centers, so the actual number may be much higher, experts warned.

"You can't tell that children are autistic just by looking at them," said Hu Qinbo, president of Qingdao Shengzhiai Rehabilitation Center. "But when you stay with them for a while, you will find their behavior to be abnormal."

The center opened in 2003, and has 31 autistic students ages 3 to 12. They arrive at 8 am and leave at 4:30 pm five days a week.

"The core symptoms of autistic children are impaired social interaction and communication, restricted and repetitive behavior, and language barrier," Hu said.

One of them is 3-year-old Le Le. The little girl from China's Northeast has a round face, big eyes and long lashes. Her hair is tied up in colored rubber bands, and she's as cute as can be in her red sweater and a yellow vest.

But Le Le never talks, never plays with others. She can make some sounds to express her mood, but cannot speak.

"Le Le, which one is yellow?" asked Li Chao, a teacher at the center who just began their one-to-one class. The little girl kept staring at the building blocks but did not respond. Li repeated the question several times, but Le Le appeared to not hear it.