Autism gains voice in China

• Source: The Global Times
• [21:22 May 19 2009]
• Comments

Unofficial action

With help from a private kindergarten in Beijing, Tian opened Stars and Rain School on March 15, 1993, with six autistic children and six members of staff. The name comes half from the 1988 movie Rain Man, and half from “Children of Stars,” the fond nickname that Taiwanese people first used for their autistic children.

The facility focuses on educating parents in the skills and techniques required to ensure their own child’s development through four 12-week courses. As the first autism school on the Chinese mainland, Stars and Rain has helped more than 2,000 families since it was founded in 1993.

Most of the furniture, air conditioners or pool tables are donated: little pieces of paper with different donor’s names are pasted to them. In the four cramped classrooms whose walls are bedaubed with children’s art, parents are learning skills like how to teach their children to fasten a zipper: step 1, zip up a zipper that is almost fastened; step 2, learn to zip from the middle; finally, the entire zip.

While parents take class, children play in the yard outside the classroom: they run around, climb up and down a plastic slide or complain in tears that someone or other took their favorite wooden horse. The only obvious difference with a regular kindergarten is that most children are pursued by a volunteer who treats them like they were a crystal vase that might crack at any moment.

“They look like normal kids, but you will find they are living in their own small world,” said Shen Tongmiao, a volunteer from Beijing International Studies University.
“Once a boy told me there is a palace in this yard and described every detail like the color of windows and the door – electric and locking. But when I mentioned the nonexistent palace to him 10 minutes later, he could not even understand what I was talking about.”

Stars and Rain also take cares of six autistic teenagers at its Group Home from Monday to Friday.
More than 20 are on the waiting list.

Group Home director Wu Liangsheng said parents pay 17 percent of the cost, or 1,200 yuan a month. The rest comes through donation, mostly from foreign charities.

Unlike the yard, the Group Home is quiet. Three boys and a girl sit at table waiting for their dinner. When a stranger passes by, they eye him curiously. But if a passerby meets their gaze, they turn away. One boy naps on a couch, while another tries to squeeze his body into a space between the air conditioner and the sofa.

“They will adopt any position to make themselves feel safe,” said Wu. “We can only afford six teenagers, but we will take care of them as long as we have enough donations.”

Incurable

“It’s impossible to cure autism, but patients can progress with timely treatment, the earlier the better,” said Yang Xiaoling, a doctor at Peking University Sixth Hospital. “The first signs of autism usually appear younger than 3, which is the best time for treatment. If the parents miss this moment, hopes of improvement quickly fade.”

As an autism expert, Yang said she had met lots of parents who keep their autistic children at home. “Families become like a small rehabilitation center, and take on all the responsibility which should be taken on partly by the government.”

Worried parents always ask her the same question, she said: “Who will look after my child after I die?”

After learning how to diagnose autism in the United States in 1983, she founded the NGO Beijing Association of Rehabilitation for Children with Autism (BARCA) in December 1993.
BARCA did not start out with the same idea as Stars and Rain. BARCA provided desperate parents with simple, professional advice.

On November 20, 2007, more than 20 years after the first diagnosis of autism in China, China Disabled Persons’ Federation founded the first official health facility for autistic children in Beijing.

Official action

There are three rows of one-story houses in the federation’s autism facility. They look simple; the rooms are neat and uncluttered. Full-day treatment last three months and costs 20,000 yuan ($3,000), including accommodation fees for the family. More than 70 families have received treatment since it was founded.

“We send doctors to Hong Kong to learn treatment for autism, and import advanced evaluation standards from the United States. All of these cost a lot,” said Wu Weihong, director of the federation’s autism facility. “The government supports 60 percent of the cost of the facility. The other 40 percent is on our own.”

Autism is poorly understood by modern medical science, and diagnosis is characterized by elaborate detail involving a variety of complex symptoms, said Yang. That can make for long and aimless treatment plans.

Autism is a brain development disorder characterized by impaired social interaction and communication, and by restricted and repetitive behavior, according to Wikipedia.

Autism affects many parts of the brain. How this occurs is not understood, but most leading experts in the field agree on a genetic connection.

“Most autistic children have difficulty communicating with others,” said Yang. “Sometimes, they have an obsession with daily products like a plastic basin or a spoon, and totally ignore the people around them.

“Lots of autistic children write letters oppositely, and draw objects top downward and bottom up.”

Most autistic children don’t need drug treatment or expensive examinations of the kind that could generate handy profits for hospitals. Autism treatment is basically a profitless task, Yang said.

Since there insufficient social welfare resources, she said, the government could instead play a role as the manager of non-government facilities, issuing licenses or certificates.

The school was not just built for her son, but for all autistic people in the hope of a social safety net following, said Tian.

“My son can only be safe and respected when every disabled person is cared for,” Tian said. “Social support for autistic people in today’s China is what America was like 20 years ago – maybe not good enough, but it keeps improving.”

Tian’s autistic son Yang Tao is now 24 years old, and attends Beijing Huiling Community Services, a non-government health facility for people with learning disabilities.

“Living in a country with a long history of 5,000 years, everything calls for patience,” she said. “I have patience.”