How a Beijing autism centre is battling prejudice and China’s nascent welfare system to provide hope for families living with autism
It’s just past 10am and at the Beijing Stars and Rain Group Home in a bleak eastern suburb of the capital, 17-year-old Zhu Yao is unsettled about cookies.
He’s pacing nervously and clenching his fists because at this time every day he begins the long, surprisingly complex task of baking cookies. He cracks the eggs, preps the dry ingredients, blends the mix, and rolls the dough flat before stamping out miniature heart-shaped sweets baked in a convection oven and sold for 15 kuai per dozen. Today, though, the process is halted because there are no eggs.
“Zhu Yao, relax,” says Lafayette, a volunteer working at the Group Home. “We’ll start in a second, as soon as we can.”
Zhu Yao’s rigid inflexibility, his absolute insistence that life be predictable and routine, is a symptom of his disorder – autism. At the Group Home, a converted three-story villa, Zhu Yao and five other moderate to severely autistic kids between the ages of 12 and 18 receive treatment five days a week from 9am to 5pm.
The need for such a facility is evident to anyone who cares to look. It’s become a widely accepted fact among healthcare professionals that the reported prevalence of autism is skyrocketing across the world. This trend didn’t skip China. However, while early-intervention facilities aiming to educate young children with autism have popped up in China’s developed areas, facilities providing meaningful life skills for older children who will soon graduate China’s nine-year compulsory schooling system are painfully few.
“The incidence of autism in the past ten years in China is undoubtedly increasing,” says Dr Guo Yanqing, a child psychiatrist at Peking University No. 6 Hospital and a pioneer in treating children with autism in China. “It’s difficult to know whether it’s because more and more people are aware of the behavioral phenomenon of people with autism, or because the actual occurrence is increasing, but it’s a trend.”
A star is born
Beijing Stars and Rain, now one of the most celebrated autism rehabilitation facilities in China, began in 1993 as the country’s first NGO targeting the disorder. It was founded by Tian Huiping, a native of Sichuan province, who was disheartened when her two-year-old son Yang Tao was diagnosed with autism. Ms Tian’s home town near Chongqing lacked any practical treatment facilities at that time, so in 1992, she made the 1,500 km journey to Beijing, where she thought the situation would surely be better. It wasn’t.
The public school system in Beijing was over capacity and underfunded. Kids with special needs were relegated to homeschooling or obsolete local schools catering to the physically disabled. No private, specialised educational institutes existed. In response, Tian rallied investors – mostly other parents of autistic kids – and founded her own center, aimed at improving the lives of children with autism by training their care-givers and parents in Western, science-based treatment methods and offering their three- to six-year-old children one-on-one instruction with experienced teachers.
“We were founded to tell Chinese society and parents the truth about what autism is and how to accept a child with special needs,” Sun Zhongkai, the Home’s Communication Director, says. “A lot of parents feel ashamed. They think: I did some bad things in a past life, so I deserve this.”
The early-childhood center offers four 11-week training courses per year, at a cost of 6,500 yuan (roughly £650) per course. Fifty families from all walks of life and all corners of China escort their children for the sessions. Many kids are led there by unaccompanied mothers, in Beijing for the first time, while their husbands stay in their home provinces to deal with affairs and earn money. They stay in bare-bones apartments rented from local villagers for about 700 yuan per month, and group together according to their home towns – speaking faraway dialects and reminiscing about their local cuisines.
The childhood center has gained a celebrity status of sorts, with a waiting list of at least 50 names and one year long. In 2007, an English-language documentary about the school made splashes at international film festivals and the centre’s treatments have been covered by CNN, CCTV and a horde of other domestic media outlets. In 2010, a Chinese film studio scored a box office success with a movie starring Jet Li based roughly on Tian Huiping and her son Yang Tao’s lives.
“Everyone was impressed by Stars and Rain when it was founded”, says Dr Tad Pu, child psychiatrist and founder of Rainbow Consulting, another Beijing-based autism rehabilitation center. “It was the first to do it.”
Expanding opportunities – at a cost
Since Stars and Rain was founded in 1993, at least three other private autism treatment facilities have opened, in addition to more than half a dozen catering to international students. Among them is Wucailu, founded in 2003, which has become China’s largest autism-specific education center, with around 250 kids, all Chinese nationals, enrolled in three campuses in Beijing. For 4,800 yuan (about £480) per month, students there, all between three and six years old, receive one-on-one teaching – in addition to music and art therapy, group learning and life skills – on clean, well-lit campuses with chandeliered hallways and sun-filled classrooms.
“We opened because the market needs it”, Fu Xueyin, the Vice Principal of Wucailu, says. “For newly diagnosed, there’s no time to wait.”
Despite the proliferation of such schools, there remain some thorny problems. Even with the local governments of first-tier cities in China now giving subsidies of up to 2,500 yuan per month to families of children with autism, the costs of private institutions remain out of reach for many – assuming they can get their foot in the door in the first place. “The waiting list for private centers and international schools is intense”, Dr Pu explains. “You get in through connections, priorities, relatives and friends of the people who run the place. In the end, it’s: do you know the principal?”
In second and third-tier cities in China’s hinterlands, the situation is far worse, Sun Zhongkai says. “Most kids need to stay at home; they can’t come to public school. Big cities now have autism schools, but in the small cities and rural areas, nothing. They don’t know what autism is.”
At Stars and Rain, the session cost of 6,500 yuan represents more than a month’s salary in Beijing, but could amount to a year’s savings for a rural family. “At the center, out of 50, 10 per cent are very poor. Some sell everything to come. One family ate nothing but noodles the entire time they were there”, says Sun.
Compounding the financial burden is the near-paralysing social stigma that many Chinese parents face while raising a disabled child. “Now, with the one child policy, there’s so much pressure for your child to be perfect. Any disability is looked upon with shame,” Sun explains.
For parents who do seek help through China’s educational system, which ostensibly protects the rights of special needs children to attend public institutions for nine years of compulsory education – usually from six- to 15-years-old – the path is, all too often, a dead-end. “There is a serious lack of trained special education teachers. In schools like Beijing Normal, which have a special education program, few decide to teach in the area”, says Dr Pu, adding that during a year when he hoped to recruit teachers from the University, he could find none willing to teach autistic children.
At Beijing Normal, one of China’s premiere teaching colleges, only about 20 graduates each year major in special education, says Hu Xiaoyi, the college’s Associate Professor of Special Education. The lack of interest is due in part, she believes, to the low prestige attached to a job that often requires hours of hand-holding, redirection and behavior analysis techniques that can be maddeningly repetitive.
“The problem is, the incidence of autism has increased incredibly”, she says. “Most children with autism go to NGOs; public schools cannot accommodate them…NGOs have teachers who weren’t trained – any major. Our special education graduates like to go to public schools for the salary and the status. The NGO wants, but they don’t want to go. It’s a real problem.”
And it’s a problem that is evident at Stars and Rain Group Home, where Zhu Yao will soon graduate.
The Group Home
Li Shuai, Zhu Yao’s 24-year-old teacher, studied psychology in Shandong province and came to Beijing in 2009 to work at the Home. Warm-hearted and baby-faced, with an electric smile that cracks open any time he’s around his students, Li Shuai’s passion for his work shows. Still, he never took teaching courses and leapt into his work unpracticed and overwhelmed. “I just tried my best to read the research and know the situation,” he says. “It’s not easy, never. But I just try.”
At the Home, the students’ days are regimented and broken down into discreet chunks, each segment involving a specific task to complete and a specific goal to reach. It’s an orderly, well-defined environment that allows the students to thrive.
In the morning, students have a group circle-up for speaking and listening skills. Then they go to individual lessons, physical therapy, and an arts-and-crafts class where the more advanced make bracelets or cookies and the lower functioning work on simple art projects.
They eat a group lunch, practicing table manners and feeding skills, and in the afternoon work on life skills like teeth brushing, hand washing, dressing, and sweeping and mopping. At 5pm, assistants with a non-profit group home for disabled people come to walk the children to their overnight home, ten minutes away. This routine repeats itself, without fail – or as close to it as possible – Monday to Friday, until the kids’ families come to pick them up on Friday afternoon for a weekend at home.
What happens when they leave?
“Of course we want to make these kids as independent as possible,” Li Shuai says, “because when they leave here, they may have nothing.”
The problem is too big for society to ignore. With the first official diagnoses of autism in China being issued in Beijing in 1984, the earliest cohorts of recognised autistic individuals, numbering in the hundreds of thousands, have reached adult age and the opportunities available to them are, by all accounts, dismal.
“Very, very few find some jobs, and if they do, they have the job because of their parents, because their parents run a company and provide a position for the kid to do some simple thing”, says Dr Guo Yanqing at Peking University Hospital No. Six. According to Dr Guo, there are few NGOs catering to such individuals, and the social safety net, as it exists in many Western countries, is in its early stages here.
“You’d have a hard time finding a single autistic individual finding a job in China’s society”, says Dr Tad Pu. “Companies don’t want to be responsible for the supervision, the overseeing of that individual.”
Very soon, Zhu Yao will face this challenge head-on.
The tall, handsome son of a mid-level government official, Zhu Yao was diagnosed with autism when he was four years old and has been at the Group Home since it opened seven years ago. He’s self-reliant, but prone to jarring verbal outbursts and awkward facial contortions when he’s overstimulated, as he often is. He’s obsessed with cleanliness, refusing to shake hands during the morning circle with any student he suspects might harbor germs, and insists on mopping the living room floor each afternoon.
He loves to bake cinnamon-raison cookies and would happily spend hours using a pair of scissors to snip out intricate paper shapes. He listens to his teachers, tries his best to obey the rules and genuinely enjoys himself at the center.
When Chang Le, a severely autistic student who walks around the center in a constant slow-gated daze, wanders off or gets his hand on something not intended for him (cookies most often) it is usually Zhu Yao who redirects him.
No-one stays at Stars and Rain forever, though. The Government cuts off funding for 18-year-olds and Zhu Yao will be leaving the Home soon, his eighteenth birthday having passed recently. After moving out, he will almost certainly live full-time at his current evening home, a facility that houses about 20 patients, most of them with severe learning difficulties.
The prospect of him wasting away at a non-profit for the mentally disabled, mindlessly cutting paper or staring at the television is almost more than Li Shuai can bear. “I just wish he would be able to find a job”, he says. “He’s good at making cookies. Maybe a bakery would hire him.”
On this day, when the eggs finally arrive, Zhu Yao is back in his element, mixing, folding and rolling the cookies that he’s come to see as an essential part of his day. The fact that this routine, and the other iron-clad rituals he’s developed at this centre over six years, will be wiped clean when he leaves in a few weeks doesn’t faze him.
It is Li Shuai who seems to bear the burden of Zhu Yao’s fate, as smiling, he watches over his pupil. “He’s my favourite”, he says softly. “I just don’t know what we’ll do without him”.
A certified special educator in the USA, Nick Compton recently finished a Master’s program at Tsinghua University in Beijing on autism provision in China. He interviewed health officials, teachers, parents and NGO leaders, and volunteered at Beijing Stars and Rain Group Home. He is conversationally fluent in Chinese and most interviews were conducted in a mix of English and Mandarin.