Website aims to help mainland China families exchange advice on autism
Platform released for Autism Awareness Day will provide doctors first database on disorder while answering questions about proper treatment
The mainland's first platform connecting medical professionals and the families of the autistic children they serve will launch this evening in Shanghai for World Autism Awareness Day.
The project, named Blue Ocean Club, consists of a website and WeChat account that researchers hope will be China's first "systematic, regulated and professional" database of the disorder, said Dr Wang Yi, vice-president of Children's Hospital of Fudan University.
The platform will be used to distribute information on treatment, invite leading experts to present speeches and provide consultations and enable affected families to share their stories.
Autism is a developmental disorder marked by delays in communication, difficulties in processing sensory information, and an absolute and rigid reliance on routine.
There is no nationwide data or reliable surveys to determine its prevalence on the mainland. Last year Fudan Children's Hospital, in conjunction with national health authorities, began a three-year study to determine the scope of the disorder.
Ten other medical institutions from seven other cities are partnering in the research. Wang, who leads the study, said the number of sufferers was rising, and treatment required the entire community's assistance.
"The treatment and intervention for autism is a long-term process, and it's impossible for people to come to hospitals to receive rehabilitation for several hours every day," Wang said. "For them, this process is 24 hours every day."
Family support and health care services in the community were therefore vital.
The study will be "seamlessly connected" with Blue Ocean Club, meaning people who register can receive advice from doctors from around the country.
"Families can chat on our website and gain a sense of belonging," Wang said. "They will find we are an organisation that can care for them and it's an organisation endorsed by the authorities."
His team is engaged in a pilot test screening involving children aged from six to 12 in Changsha , Guangzhou, Harbin and Shanghai, with 400 pupils from each city taking part. It should end by July.
Researchers will soon publish two books, one for mainland doctors and the other for people with autism, based on the latest diagnoses and guidelines from Western countries, Wang said.
Current guidelines were developed by the Ministry of Health in 2010 and Wang said they lagged behind other countries.
Dr Jiang Yanqing , from Shanghai Hongci Children's Hospital, said diagnosis standards in the United States were stricter.
"They can deal with a large number of autism patients because there is a sound support system comprised of communities, volunteers and schools," Jiang said. "But on the mainland, young autistic people can only rely on their families. If a family has an autistic child, at least one parent will quit their job to look after them around the clock."
Dr Ji Hanping , a leading figure in autism study, said uniting families was key to ensuring a "bigger voice" was heard by authorities. Ji, the director of the mainland's first official autism rehabilitation centre at Sun Yat-sen University's No3 Affiliated Hospital in Shantou , estimates the mainland has 13 million people with autism.
Hua Gangqiang , a father in Shanghai, said he stopped working 18 years ago when abnormal behaviour began to emerge in his then one-year-old son, who was later confirmed to be autistic.
"In the early days doctors told me that there was no treatment for my son and we should treat him at home," Hua, 59, said.
"After so many years of training, my son can take care of himself at home - a good result, but he would injure himself if he didn't take medication."
Hua said he was not interested in joining any organisation or exchanging information with other families, because he has no time to surf the internet.
"I hope our government can build non-profit institutions to attend to autistic people, so we can send my son there and don't have to endure the burden of extra costs," he said. "I know it's impossible for my son's condition to get any better. It worries me every day - when I become too old, who will my son rely upon?"