South China Morning Post, Jan 4, 2006
THE POWER OF MUM
BY PAUL MOONEY
When Tian Huiping returned from graduate studies in Germany in 1987, her parents - who had been taking care of her small son - expressed concern about the toddler's lack of speech. But Ms Tian didn't want to believe there was anything wrong with her son. 'I told myself: 'Don't think too much, he's OK. Don't worry about him'.'
By the time he had turned three, Yang Tao was still not speaking. Ms Tian was anxious. She visited various doctors, but not one could tell her what the problem was. Finally, a psychiatrist diagnosed her son as being autistic, a condition present from early childhood, characterised by great difficulty communicating and forming relationships with people. The conventional advice given by doctors back then, when few had even heard of autism, was to have another child, using a loophole in China's strict one-child policy that allowed parents of handicapped children to have a second child.
'It was a difficult time,' Ms Tian said, shaking her head. 'I couldn't find anyone who could help me.'
Looking back, she says she's grateful that she was even able to get a diagnosis. Ms Tian says there are only 50 doctors in China today who are able to diagnose a patient with autism - but there are an estimated three million sufferers. 'I have met many parents over the years who didn't know what was wrong with their child,' she said.
In 1992, a friend urged Ms Tian to seek better medical care in Beijing. She was sceptical, but made one last attempt. 'Ididn't know what to do with him,' she said. 'I was exhausted.'
Ms Tian and her seven-year-old son took the train to Beijing, where they visited top hospitals, but none of the doctors knew anything about autism. One hospital kept Yang Tao in for four months while it administered herbal treatments, none of which helped.
Then, one day, Ms Tian discovered a brochure on a hospital counter that would change her son's life and the lives of thousands of other autistic children. The booklet, printed by an autism association in Taiwan, offered basic ideas on how to teach autistic children. Ms Tian read the brochure over and over again, and started using the techniques to teach her son. To her surprise, they worked.
'This gave me hope,' she said. 'It was not a hope that he could go to school or go far, but that I could do something for him.'
With no organisation providing assistance to autistic children, Ms Tian decided to open her own school. A doctor discouraged her, saying there was little she could do to help the then estimated 400,000 autistic children in China. But the large numbers galvanised Ms Tian, who said this was the first time she realised she was not just one of a few mothers with an autistic child. 'If he'd told me there were only four kids, I wouldn't have made this decision,' she said. 'But for 400,000 children, it was definitely worth doing something.'
Ms Tian quit her job, left Yang Tao at her parents' home - after six months he joined her - and returned to the capital. 'I arrived in Beijing with just a suitcase and a dream,' she said. She found a small kindergarten that agreed to provide space, and recruited four teachers, who she trained using information from the brochure. She was paid just US$36 a month for running the programme, which had just six children, and she had to sleep in a small storage room under the staircase. The kindergarten shut her down two months later, saying it wasn't profitable enough.
But teachers and parents were so excited about the progress the children had made that they looked for a new home for the school. As news of the school spread, students started applying from over China. When Ms Tian realised so many people wanted to send their children to her school, she knew she had to expand. The school changed course, and began accepting pre-school students aged three to six and their parents for an 11-week programme that would teach parents how to teach their children.
In 1997, Ms Tian found the site for her school on the outskirts of Beijing. That same year, she travelled to the US, where she learned more about teaching autistic children, and picked up books, videos, and other teacher training materials.
In the 12 years since her Stars and Rain Education Institute for Autism opened in Beijing as a kindergarten, the programme has expanded to include children of all ages - about 80 students now attend each session, along with their parents. More than 3,000 children have gone through the programme since it opened, and the waiting list is 18 months long.
In a classroom recently, 12 students and their parents watch while a teacher gives a demonstration. The young woman places a yellow pen on a small table and tells a small child to pick it up and hand it to her. When the girl follows the directions, the teacher claps her hands with excitement and says, Ni zhenbang! (You're really good!) The parents giggle with embarrassment as each takes a turn going through the same simple exercise with their own children.
The institute is 'incredibly effective', says Helen McCabe, an education professor at Hobart and William Smith Colleges in Geneva, New York, who has studied autistic education in China since 1994. Parents learn the theory behind teaching children using applied behaviour analysis and discrete trial teaching, and gain experience implementing what they've learned with their children, while teachers offer feedback. 'When they leave, they are better able to teach their child, both because of increased skills and knowledge, and also because their confidence has improved,' Professor McCabe said.
Unfortunately, China still has too few such programmes. The mainland has special education schools, but teachers aren't trained to teach autistic children, and many even refuse to accept them. About 30 networking centres have been established around China by parents - many of them alumni of the Stars and Rain programme.
Stars and Rain is now working with Heartspring, an American NGO in Wichita, Kansas, that works with the disabled. Last year, Ms Tian raised funds to send two teachers to the US, where they visited schools and programmes working with people with autism. Heartspring will send a professional teacher to Stars and Rain this year for two weeks to work with Chinese teachers, and two or three Chinese staff will visit Wichita.
Ms Tian is still disappointed that more is not being done to help families, but she remains upbeat. 'Our future depends on how fast China develops,' she said. 'Things aren't perfect, but I'm optimistic. China is changing.'