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Coming to grips with autism in China

By Nick Compton and Liu Zhihua | | Updated: 2013-04-01 18:30

The Ministry of Health and Children's Hospital of Fudan University in Shanghai, are spearheading a three-year, 32-million yuan project to reveal the prevalence of autism in China and create universal protocols for screening and treatment.

The project is the country's first nation-wide survey of autism, and will give policymakers their clearest picture yet as to the stakes of the situation at hand.

"The goal is that in the next three years to not only train core group of individuals with high level of skills in terms of diagnosis and intervention, but also to deliver a public health statistic that would help guide them (China's government) in development and implementation of social policies," says Dr. Andy Shih, tvice president of Scientific Affairs at Autism Speaks, a US-based advocacy group that is advising 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 is a three-tiered undertaking, coordinated between Children's Hospital of Fudan Univeristy and seven partner hospitals spanning the geographical berth of China, according to Wang Yi, the head of the hospital's neuroscience department, and the director of the project, which is funded by a 32-million-yuan grant from the Ministry of Health and has a deadline of 2015.

During the first phase, which will begin in July, and 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 geared towards obtaining a true count of the rate of autism in China, will take at least one year. It involves a sample size of up to 200,000 geographically diverse middle school students, aged 6-12, Wang Yi says.

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The final phase aims to set-up a nationwide database 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," Dr. Wang Yi says. "China now doesn't have the simple statistics we need. There is no reliable or consistent data."

Wang predicts that 1.5 percent of the samples may turn out to indicate autism, far outpacing the official government statistic in 2005 of 1.1 per 1,000. In China, the prevalence of autism has been surging over the past few decades, says Jia Meixiang, an autism specialist with more than 20 years' experience at No 6 Hospital of Peking University.

Liu Jing, a child psychiatrist at the same hospital estimates that 30 percent of her new cases are referred with suspicions of autism. There are few clues and much debate as to the reason behind the rate increase, but Jia says despite the increasing prevalence and growing social awareness, many in the autism community are left to fight an uphill battle as some services still lag.

Over the past decade, with public schools often turning away autistic kids, dozens of similar private treatment centers have sprouted up all over China, most started by parents of an autistic son or daughter. Some are well-staffed and self-sufficient, but many are bare-bones operations with little government support and just enough financing to keep going. With the attention brought by the new survey, Dr. Wang Yi hopes that will change soon.

"That is out goal," Wang says.

"With clear data, the government will be able to better support this population."


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