China moves to tackle autism with first study of prevalence
It's World Autism Day, and Beijing is launching a study of autism's prevalence amid concerns that families are not getting the help they need
At 14, Ma Baiqi is the type of quiet, sensitive child you just want to hug, and keep hugging.
He has a mischievous, dimpled grin and lights up on praise, nodding his head in victory any time he's given a compliment. In the face of criticism or anger, he sinks like a hurt puppy: head hung low, mouth pursed, his eyes often dampened by tears. Given half a chance, he'd spend a whole day outside his group home in Beijing blowing the heads off dandelions and watching the seeds float away on the wind.
Ma is one of the untold millions on the mainland affected by autism, the pervasive developmental disorder marked by delays in communication, difficulties in processing sensory information, and an absolute and rigid reliance on routine and predictability. While health-care providers and scientists around the world claim the global prevalence of autism has exploded in the past few decades, China has remained an enigma, with no nationwide data or reliable surveys to determine the prevalence of the disorder in the world's most populous country.
That will soon change, as Fudan Children's Hospital in Shanghai, in conjunction with the national health authorities, has embarked on an ambitious, three-year, 32-million-yuan (HK$39.5 million) project to determine the prevalence of autism in China and charter new protocols for diagnoses and treatment.
"The goal is in the next three years to not only train core groups of individuals with a high level of skills in terms of diagnosis and intervention, but also to deliver a public health statistic that would help guide them (the central government) in development and implementation of social policies," said Dr Andy Shih, the vice-president of scientific affairs at Autism Speaks, a US-based advocacy group that is providing advice on the project.
"As part of this overall growth in autism research in China, this reflects the overall interest of the government agency, in terms of autism as a health priority (and) a scientific priority."
The project has three tiers and is co-ordinated between the Fudan hospital and seven partner hospitals spanning the breadth of the mainland, according to its director, Wang Yi , who is head of the neuroscience department at Fudan Children's Hospital. With a completion deadline of 2015, it is funded by 32 million yuan granted by the ministry of health before it was merged into the National Health and Family Planning Commission earlier this year.
In the first phase, which begins in July and will last four to six months, staff at the eight hospitals will be trained and a pilot survey will be carried out. The second phase, an epidemiological study to obtain a true count of the number of autism sufferers on the mainland, will take at least one year. It involves a sample size of up to 200,000 geographically diverse middle school pupils aged six to 12, Wang said. In the final phase a nationwide database will be set up for hospitals and service providers to share screening, diagnoses and treatment statistics and protocols.
"Before we can treat autism, we need to do some basic work in the clinic," Wang said. "China now doesn't have the simple statistics we need. There is no reliable or consistent data."
Wang predicts 1.5 per cent of the sample may have autism, far outpacing the most recent official government statistic, in 2005, of 1.1 per 1,000, or 0.11 per cent. The new study comes in the face of an eye-popping report last year by the US Centres for Disease Control that estimated one in 88 children in the United States (one in 54 boys) had a condition on the autism spectrum, costing the country US$137 billion a year. In South Korea, a 2011 survey of the total population of children aged seven to 12 year in a selected community found one in 38 was autistic, the highest ratio ever recorded.
With more reliable statistics comes a better understanding of how drastic the stakes are, Wang said. While the newly installed government of President Xi Jinping has made mental health a linchpin of its social welfare policy, autistic individuals and their families have been dogged for decades by a dearth of resources, barriers to education and deeply entrenched stigmas and misunderstandings.
"From our end, we see a lot of autistic families suffering," said Fu Xiuyin , vice-president of Wucailu, a private, early childhood autism rehabilitation centre with three branches in Beijing. "We really need the exact figures to plan our organisation, and to figure how many schools we need in the future to better serve these families."
Wucailu's 250 pupils enjoy bright classrooms, plush facilities and well-trained teachers; but the fees average 4,800 yuan per month, at least 1,000 yuan more than the typical urban worker makes in a month.
For the millions of families on middle to low incomes struggling to support loved ones with autism, such facilities are out of reach. Despite nine years of education being compulsory, few public schools have the facilities or teachers to accommodate autistic pupils. The public schools that do exist for handicapped children are summed up in a single word - "lacking" - by Hu Xiaoyi , associate professor of special education at Beijing Normal University, one of the country's top teaching colleges.
"The problem is the incidence of autism has increased incredibly," Hu says. "Most children with autism go to [facilities run by non-governmental organisations], as public schools cannot accommodate them."
The central government has met the increasing demand for special education by promising to implement across-the-board social welfare stipends to support families caring for an autistic member. The problem, Fu says, is that directives from Beijing are carried out differently from region to region, so financial support for Beijing residents affected by autism (up to 2,000 yuan a month) is different from the level of support in Shanghai, which is different from the amount offered further inland. The differences are not entirely based on local incomes or treatment costs, Fu says; they often come down to the whims of local bureaucrats.
"There is no good policy yet," US-trained child psychiatrist Tad Pu, the managing director of an autism consultancy in Beijing, says. "There is more and more awareness, yes, but it's not from the government or the provinces. It's society becoming better informed."
Liu Jing , a child psychiatrist with nearly 25 years' experience at Peking University No6 Hospital, one of the first institutions in the country to diagnose and treat autism, says the results of the new survey will undoubtedly pressure the government to focus more attention on the disorder, which she estimates affects at least 22,000 families in Beijing alone.
"We will better know the true prevalence in China … and the government will then use this data to make policy."
Liu says the situation is particularly dire in rural areas, where few, if any, specialists are trained to diagnose autism, and where even basic services are lacking.
"In rural areas, the situation is bad," she says. "A lot of parents still don't have the [appropriate) knowledge. Their family is poor. They have no knowledge. There is not enough money to help their children get training."
Liu believes the survey will help reveal the depth of the largely unexplored crisis.
At Ma Baiqi's group home, a three-storey villa on the far eastern flank of Beijing, the five autistic children aged 11 to 17 spend their academic day learning how to brush their teeth, shake a stranger's hand and calm themselves in the face of sensory overload. Teachers try to coax eye contact and verbal responses with communication cues. Still, Ma and his four classmates spend most of the day floating, singly, from room to room, each seemingly absorbed in his own world.
Ma's mother, Shi Guifeng , is a university-educated, high school psychology teacher who suspected her son was different at the age of three when he wasn't interested in playing with his kindergarten peers. He is one of the lucky few on the mainland; he was diagnosed at a leading hospital, received early childhood intervention and is now at a respected group home with American-trained staff.
Even so, Shi, who gets a subsidy of 200 yuan a month from the Beijing government for her son's care, says that without more government support and attention, the strains of caring for Ma, especially as he approaches adulthood, will become unbearable.
"There's just no way," she says, "Maybe with this new survey and the government's new attention, it will get better. I hope. We all hope."