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NGOs Take Lead in Providing Treatment to Autism
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Xiao Bao is cute and mischievous like most 6-year-old boys. When he plays on a swing, his face lights up.

But if you spend more time with him, you will notice he seems overactive. And he's aloof, immersed in his own world.

There's a reason Xiao Bao was diagnosed with autism in July.

"Autistic children may appear to be like aliens who don't know how to communicate with others," said Chen Jie, headmaster of Shanghai Qingcongquan Autistic Children Training Center.

"They need to be taught everything. They need to be pushed in whatever they do, which is challenging for parents and teachers."

Autism is a severely incapacitating life-long developmental disability that typically appears in children by the age of 3.

It occurs in approximately 15 out of every 10,000 and is four times more common in boys than girls.

According to a report on the website, there are more than 800,000 autistic children in China, most younger than 14.

And a shortage of training centers is making life difficult for their parents. There are only four centers in Shanghai, providing treatment to no more than 150 children, despite experts' estimating that there are over 8,000 autistic children in the city.

Most of China's autism training centers are non-governmental organizations (NGOs) run by parents, who know the pain of having autistic children.

Jiang Limin, from Shanghai, is one of them.

Jiang said she suspected something was not right with her son when he was 2 years old in 1996.

The young mother took him to many hospitals before he was finally diagnosed with autism by a doctor in Beijing.

After he received treatment for three months in the Beijing Xingxingyu Autistic Children Training Center, Jiang began to look for a kindergarten in Shanghai for her son.

"We tried as many kindergartens as we could, but they all kicked him out," she recalled, shaking her head.

"Can you imagine having such a lively child, but never having the chance to send him to kindergarten?"

At first Jiang urged the government to provide support. But she soon realized that starting her own autistic training center would be more efficient as "early intervention is vital to the future development of the children, and they cannot wait."

In spring 2003, Jiang opened the first NGO autistic children center in the city, the Shanghai Xingyu Autistic Children Training Center.

The shortage of funds was a constant headache for the new headmaster. She even had to borrow tables and chairs.

A former teacher at the Xingyu center, surnamed Ruan, admitted the school was much worse equipped than she had expected when she had first visited it. She hesitated before taking the job when an autistic boy rushed to her, calling her "ayi" (aunt) as she walked into a classroom.

"His mother burst into tears of joy when she heard him calling me, as the boy had even never managed to pronounce the word 'mother' before," said Ruan. "She grabbed her son, hugged him and pleaded with me to stay with him.

"I was deeply touched and decided to stay because I am a mother too."

Teaching autistic children requires enormous patience, according to Ruan. Most importantly "you should treat them as if they were your own children."

Ruan said she is delighted whenever an autistic child glances or smiles at her, even without words.

"That simple reaction shows that I am close to them that's enough for me," she said.

Over the past three years, about 180 of the center's children have been treated by Applied Behaviour Analysis, a method developed in the United States, which is considered the most effective approach to improving the lives of people with autism. Thirty-five percent of the children have since joined ordinary local kindergartens or primary schools.

The center is currently training 30 students aged between 2 and 14.

Due to its lack of funding the Qingcongquan center is only able to provide half-day treatment for autistic children.

A few days ago a screaming boy sat in the center's playroom, surrounded by three teachers. He was in a bad mood and swiped away their hands.

Finally an older teacher managed to give him a hug, saying with a warm smile: "You have bitten and kicked me. Just tell me what I can do to make you happy again." A few moments later, he became calm in her arms.

Chen Jie said the amount of effort needed to treat an autistic child was at least 100 times that needed to educate a normal child.

"The reason we carry on with our work is that we cannot let down these parents, who we believe are the greatest parents in the world," Chen said.

"They have refused to abandon their children, and some even quit their jobs to look after them full time. They never give up and keep trying. Their presence in the center is the best proof of that."

One Jiangsu Province native surnamed Lu requested leave from her job for three months to travel to Shanghai last month to seek treatment for her autistic son.

She rents a tiny room without a private bathroom or any electrical appliances. She jokes that she lives in a time warp left behind by the city's booming economic success.

Every morning her son and her leave for a nearby clinic, where the little boy receives acupuncture for three hours, then they rush to the Qingcongquan center for a two-hour class in the afternoon.

Lu said that through it all she never loses her faith.

"I have the lowest expectations for my son, while other parents expect their offspring to go to Peking or Tsinghua universities," she said. "My goal is just to train him to be independent and look after himself. I am pleased with every single step up he takes."

Training a 'lifetime matter'

Another Jiangsu native surnamed Ye has been bringing his 6-year-old son to the Xingyu center for a long time. An unemployed father, he studies psychology whenever he has a chance.

To his delight, his son is able to speak several words, but he also pointed out that the boy would have done better if he had been diagnosed earlier.

"Many doctors have little knowledge of autism, so their diagnoses are uncertain," said Ye. "We were told to wait longer to see how things go. As a result, we have missed the best period for our son to get treatment."

He added that traditional beliefs, which say that children with odd behaviour will become normal after growing up a bit, also prevent parents from seeking early intervention.

"I believe the educational system and even society as a whole don't know much about autism, which leads to insecure social welfare for those children with special needs," said Jiang Limin, who opened Xingyu.

She said training for an autistic child was a lifetime matter, with special care and support strongly recommended even though the child may be able to study at a normal school.

"If he is neglected at school, he might become withdrawn," Jiang said. "As a result, all the efforts we put in to help him at the center would be a waste."

Jiang also suggested that the government play a prominent role in providing support for autistic children rather than leaving the tasks to parents.

According to Jiang, about 80 percent of the money to run autism training centers in Taiwan is provided by the local government and enterprises, whereas on the mainland, governments allocate no funds for this. "Relying only on tuition fees to run a training center is certainly not enough, and the poor salaries paid mean we eventually lose teaching staff," said Jiang.

Chen Jie said the Qingcongquan center has not received donations from any organization or the government since it was established, and she has no idea who to apply to for funding, especially as she often doesn't even have enough money to pay the center's rent.

"All the financial support I've got is from my friends and colleagues, with donations ranging from several hundred yuan to a thousand," said Jie.

Jiang said she was saddened by the fact that the country does not yet define autistic youngsters as disabled.

"The funds needed to train an autistic child are far beyond the cost of caring for many other kinds of disabled people," she said, adding that despite the cost, every cent used to train an autistic child was money well spent.

She mentioned her son is studying at an ordinary local primary school.

"My son's appearance in the class has raised the students' awareness of autism, prompting them to help him and care about him," she said.

"Surely our society has more warm-hearted people than those who choose to focus only on their own studies and careers. More personal value will be developed by people who help care for people with special needs.

"That's why I believe autistic children can be so valuable to our society."

(China Daily October 18, 2006)

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