Families struggle to cope with autistic children

Top: Teacher Liu Nini works on language with Le Le, a 3-year-old girl with autism, at the Qingdao Shengzhiai Rehabilitation Center. Each lesson lasts about 20 minutes. Above: Can sea mammals help? The ultrasound emitted by dolphins is thought to stimulate dormant brain cells in autistic children, leading to improved language and communication abilities. This boy had his encounter at a rehabilitation center in Shenzhen, Guangdong province, in April. Photos by He Na / China Daily and Li Musheng / for China Daily

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The term refers to people who appear withdrawn from the outside world, who are self-absorbed and do not communicate with others.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.

Why?

Many parents blame themselves for the suffering of their children.

"Autism has a strong link to genetic abnormalities. That is generally accepted," said Kuang Guifang, director of the psychology department at Qingdao Children's Hospital. "Birth defects, environmental causes such as heavy metals and pesticides, and childhood vaccines also are blamed."

But experts say that the causes of autism are still unclear after more than 60 years' research worldwide. The results of researchers from various countries often differ.

Treatment

"Whenever I meet the parents of autistic children, I tell them the importance of early intervention," Kuang said. "For many children, early intervention makes a big, big difference."

"Most of the signs of autism begin before a child is 3 years old," said Liu Zhiyun, director of Tianjin Autism Rehabilitation Center. "Early behavioral or cognitive intervention can help autistic children gain self-care, social and communication skills."

Each child's problems are different, so one-on-one teaching and training are preferred, and that puts a high demand on the teachers' knowledge of autism and psychology.

"Autism is considered to be lifelong," said Sun Ling, director of adolescent psychology at Tianjin Mental Health Center. "Parents really need to have good psychological preparation themselves. Parents' active involvement and cooperation in training play a vital role.

"Although there is no known cure, there have been reported cases of children who recovered worldwide. Some of them even work and marry as normal people. Though they still have some defects in social communication, at least they can take care of themselves," she said.

Despite high functioning by some patients, "less than 5 percent of autistic people show unusual abilities, such as in drawing, music and numbers. The intelligence quotient of almost half of autistic people is lower than average level," according to Wu Bolin, professor at the Institutes of Biomedical Sciences, Fudan University, as quoted by Science and Technology Daily.

Those who are severely affected may exhibit extreme forms of self-injurious, repetitive, highly unusual and aggressive behaviors. In such cases, doctors suggest pharmaceutical treatment to control behavior.

Money problems

Zhang Hui from Daqing, Northeast China's Heilongjiang province, is in Beijing to care for her autistic grandson and observe his training.

After two years, the 5-year-old boy has made big progress. Not only have his symptoms of hyperactivity disorder improved, but he can also utter some words.

But the progress is hard earned and well paid. The family has spent about 120,000 yuan ($18,900) during the past two years. To keep expenses down, the boy's grandparents' eat sprouted beans for their main meal. "His parents still work hard in Daqing and save every penny just so the boy can take care of himself one day," Zhang said.

China has only about 500 rehabilitation centers to meet the increasing demand, and most are privately owned. Fees range from 2,000 yuan a month for the smallest ones to 4,000-5,000 yuan for well equipped private centers.

Autistic children were added to the government's list of disabled people in 2006, which in some cities may make them eligible for a subsidy, but it lags the huge expense of rehabilitation.

"Many parents cannot make ends meet every month. How can they have extra money for the tuition?" said Tian Zhongmin, who was a lawyer before she founded a training center for autistic children in Beijing.

"Renting the schoolhouse, hiring teachers and daily expenses, all my savings have almost gone during the past three years. I really want to help them, but without other financial support, I can count the days until closing.

"We've already reduced the tuition fee to the lowest point," she said, "but our fund is really limited. I do hope society and the government could give this more attention and support."

Many private centers share Tian's worries. Kuang, the psychology department head at Qingdao Children's Hospital, said most charities like to donate money for children who can recover quickly, from something like surgery for congenital heart disease. But for autistic children, the "investment" cannot produce a quick result, and may show no yield whatsoever.

Call for support

"Autism is not a rare disease. It needs more support from society and the government," said Li Jing, an assistant researcher from the Chinese Academy of Social Sciences who is involved in longtime research on autism. "Due to the lack of related knowledge, autistic children have not been paid enough attention and many children missed the best therapy period."

"At present China still has no authoritative data related to children with autism, and is without a practical method for preliminary screening and effective intervention measures," Kuang said.

There's a big shortage of professional medical staff and teachers as well, she said. "China's autistic research is still at the infant stage. The government also needs to increase input and investment in research and education."

Li Chao trained at Qingdao Shengzhiai Rehabilitation Center to work with autistic children. "We had 20 classmates when I was in school," she said, "but now only another woman and I still work as autistic teachers."

Autism is a difficult problem worldwide, but some countries have reported achievements.

Kuang said, "I stayed in Vienna, Austria, for three months, and visited many autistic centers. In Vienna, as long as parents can provide a record of the diagnosis, the children can be accepted at local autistic schools. Most of the schools are built in communities and local government covers all the tuition fees.

"Of course, China's actual condition is different from Austria's, but it can be an example that China learns from in some way. We can make some experimental centers in some cities to see whether they can be promoted nationwide," she said.

"Though China still doesn't have unified regulations on autistic rehabilitation centers," Li said, "the China Disabled Persons Federation has already begun exploring ways to strengthen the regulation in the field and aim at establishing some basic regulations and guides in service methods, facilities and donations."