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July 26, 2011

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Autism needs vast, help scarce

AT first glance, 5-year-olds Ting Ting and Xiao Xiao look like other children who move about and whose faces light up when they sing.

But they are autistic and they could not be admitted to a regular public kindergarten a year ago. It has taken a year's special training at a private center run by a non-governmental organization to make them eligible for public school in the fall.

They are very lucky, since there are only seven or eight NGO-run training centers for autistic children in Shanghai and 10 classes for special needs children at primary schools citywide, each class with capacity of 10 seats including those with autism.

The need vast, the resources scarce.

Autism is developmental disorder that typically appears in the first three years of life, and affects the brain's normal development of social and communication skills. There is a range of autism: Some patients are extremely withdrawn and non-communicative, others are less impaired, but all have problems socializing and empathizing.

"It's a huge shock to parents when their children are diagnosed of autistic. The suffering is hard to imagine," says Chen Jie, principal and founder of the Shanghai Qingcongquan Training Center for Children with Special Needs in Changning District.

Qingchongquan literally means green, bright spring.

Autism Center

The center on Hami Road, which opened in 2004, has enrolled 20 children aged from two to six.

"The best period for autistic children to begin treatment is before they are six years old. Early intervention is vital to the future development of the children, so they cannot wait," says Xu Junyun, a teacher at Qingcongquan.

The center contains small individual classrooms painted in bright pink, blue, green and yellow. "We Have Love," says a sign on the wall. Training includes sensory awareness and response (face to face), communication, physical activities, behavior modification, music and other classes.

Except for one-on-one training, other classes contain five to six children and two teachers. "The peaceful and pleasing environment makes both the kids and parents feel love and peace," Xu says.

The center offers seminars and education for parents, as well as groups where they can share their feelings.

"Almost all the parents came here with desperation and sadness. Here they don't feel alone anymore. This psychological support is very important," Xu adds.

Teaching an autistic child is far more difficult than teaching a normal child. "They need to be taught everything. They need to be pushed, whatever they do, which is challenging for parents and teachers," says Xu. Teachers and parents are frustrated by children's reaction, or lack of reaction, and the need to teach something again and again.

Xu says she likes the "pure" environment, compares the children to "angels" and says teachers carry on because they do not want to let the parents down.

Xu gave up a high-paying job at an international school last year and joined Qingcongquan, where she earns half the salary.

"You should treat these children as your own child," says Xu, adding that it takes enormous patience and sense of responsibility.

The center has around 20 full time teachers, with an average age of 25 years. Most have backgrounds in education and charity work, one in philosophy.

"In China there is no specific major or courses to train special education teachers for autistic children," says principal Chen. The center trains and tests its teachers.

Volunteers help out for holidays and outings. Some expat volunteers are from the US, UK, various European countries, Japan and South Korea.

After one-year's training in Qingcongquan, Ting Ting and Xiao Xiao will enter a regular kindergarten next month.

Training Success

"They are lucky, but admitted by a regular kindergarten is not the final criteria for judging special education," says Chen, adding that each case is different, requiring different training with different goals. "Our goal is to train them to be independent and to look after themselves. I'm pleased with a child's every single small step forward," she says.

This kind of basic training for an autistic child costs around 3,000 yuan (US$375) per month. The center's operating expenses are at least 40,000 yuan a month.

The center receives support from businesses and charitable organizations. More nongovernmental organizations are helping.

The Changning District government has also helped, providing a new location with lower rental fees last September.

"Compared with our previous center in old apartment, this is totally different," says principal Chen. The old apartment was small and neighbors complained about the noise.

Before she founded Qingcongquan seven years ago, Chen used to work in sales and marketing.

At first she was one of three people who wanted to make a contribution to preschool education. "To our surprise, the first group who came to us were autistic children. I can remember the pain in the hearts of their parents," Chen says.

Parents worry about how their children will cope, how they will communicate, protect themselves, take care of themselves and manage after their parents die.

"Their children are like a heavy stone in their hearts, weighing parents down so they cannot breathe," she says.

Since Chen is also a mother, she decided to help the families of autistic children, and Qingcongquan was formed.

At first, financial support came from friends and colleagues donating a few hundred yuan or maybe a thousand.

There not enough training centers in the city, and only seven or eight autism training centers run by nongovernmental organizations, such as Qingcongquan, says Chen.

Out of Shanghai's 17 districts and one county, there is only one primary school in each of 10 districts with a class for special needs children, including autistic children at least 6 years old, according to Chen.

"Compared with the need, the number is nothing," says Chen.

According to Xinhua news agency, there are an estimated 800,000 known cases of autistic children in China, mostly likely underestimation. The number of known cases in Shanghai is more than 8,000.

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