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Apr 02, 2016

When Huang Congcong learned on her 33rd birthday that her 3-year-old son Isaac had autism, she knew she would never want to celebrate that day again. Even now, 18 months since hearing the news, Huang, who holds a doctorate in physics, gets emotional when she talks about the build-up to the diagnosis. Isaac had become increasingly withdrawn, and he was using only simple sentence constructions such as “I want.” “The kindergarten teachers told me I worried too much, that he was just quiet,” Huang recalls. “They said my son was perfect.”

In China there is very little understanding or awareness of autism. To most Chinese people, the developmental condition Westerners know as autism translates in Mandarin to “closed-self disease,” which might suggest a drooling, nonverbal child with no hope for a normal life.

Autism — or more correctly “autism spectrum disorder” (ASD) — is the broader name for a group of mental disorders that affect approximately 1 percent of the population worldwide. Symptoms range from mild learning difficulties to extreme special needs.

A cloud of secrecy and shame hangs over the discussion of autism in China. In September 2013, Huang was contacted by one of Isaac’s kindergarten teachers, a woman who had some experience with special needs children. She recommended Isaac be tested but asked Huang to keep their conversation secret, as the head teacher might not appreciate staff members encouraging parents to enroll their children in alternative schools.

The medical landscape in China offers limited assistance to families of autistic children. When Huang took Isaac to see a leading pediatrician in Shanghai, she was advised to play with her son more. “The doctor implied that Isaac’s autism was my fault, that I neglected him," she says. "I felt so desperately guilty. Now that I know more, though, I can see the doctor knew very little about how to help our son.”

Children with autism may require help for their entire lives, or they may grow up to live and work independently. The outcome depends on the severity of the condition and on the developmental assistance received during formative years. Huang admits that she delayed seeking assistance because she was reluctant to accept that her son was less than perfect. “Apparently, autism is fairly common among highly educated people, so I’ve told my daughter not to marry anyone with an IQ higher than 120,” she says with a wry smile. Huang’s husband has an IQ of 150.

Huang Congcong and her family enjoy a lakeside view in Hangzhou, Aug. 24, 2015.  Sarah O’Meara/Sixth Tone

In the year that followed Isaac’s diagnosis at the Children's Hospital of Fudan University in Shanghai, Huang and her husband, also a Ph.D., embarked on the painful journey with which only parents with special needs children are familiar. Huang soon discovered she would need to devote the majority of her spare time and energy to helping her son develop basic life skills — she would not be able to rely on the state education or welfare systems. “When I started reading about autism,” Huang says, “I began to feel like an idiot. I felt I should have noticed Isaac’s condition a long time ago.”

For parents of autistic children, the general lack of awareness of the disease in China amplifies the inherent difficulties. Not only do parents not understand the problem, but their children also face a demoralizing social stigma. “Once we went to a park and rented a big bicycle with four seats in a row. Isaac wanted to drive, but he was only three years old and couldn’t even reach the wheel. He screamed for half an hour in the middle of a crowd of people. People were saying, ‘Where is his mother? Why does she let him throw tantrums like this?’ But I couldn’t calm him down! He had put up a wall around himself to the point that no message was getting through. This was before the diagnosis. Now I know what to do to help him, but other people still don’t understand what it’s like.”

The signs generally start to become evident around 18 months. Children with ASD tend to derive little pleasure from interacting with others, show limited verbal skills, and have difficulty controlling their movements. Boys are also much more likely than girls to develop autism.

Parents want to keep the illness a secret. They’re afraid of a positive diagnosis and the stigma it brings.

Studies show that autistic children progress best when surrounded by non-autistic children, but unfortunately the Chinese school system has little tolerance for this ideal arrangement. As soon as autistic students begin failing tests, behaving differently, and causing problems for teachers, they may be asked to leave school. “In China, there are two types of children: normal and abnormal,” says Huang. “Abnormal children go to special schools. The only criterion for entry is that you need to be able to walk to it. These are places where children with extreme developmental problems go because there is nowhere else for them to turn. My son would learn nothing there.”

Parents of children with autism do everything they can to avoid this course of action, from seeking out extracurricular special needs programs and hiring expensive tutors to training themselves to be in-home educators. “I feel lucky to have access to so many resources because I live in Shanghai,” says Huang. “Most parents don’t have this luxury. In smaller cities, there’s nothing. What happens to those children?”

Two years ago, the Children’s Hospital of Fudan University launched an ambitious national research project to establish the prevalence of autism in China, with the results due later this year. Professor Wang Yi, vice president of the hospital, leads the study. She knows the system needs to change but admits that research on autism is lacking. “The World Health Organization estimates that there are 5 to 9 million autistic children in China, although we have no official data yet,” says Wang.

Early findings from Wang’s study suggest that in China autism may occur in 4 out of every 1,000 children between the ages of 6 and 12. However, this figure does not include children who drop out of school or those in special schools, so the actual number could be much higher. “The key to helping children with autism go on to lead independent lives is early intervention,” says Wang. “In general, the outcomes for children without early intervention are terrible. If the child is 18 months old, then it is not so serious. But after 6 years old, it’s a very big problem because they haven’t learned how to communicate or behave properly, so they mostly stay at home.”

The intervention phase can only begin after diagnosis. Yet according to Chen Jie, co-founder of the Qing Cong Quan Training Center for Children with Special Needs in Shanghai’s Changning District, developing a nationwide program to identify autism in young children could take decades.

Chen Jie of Qing Cong Quan Training Center for Children with Special Needs in Shanghai, Oct. 30, 2015.  Sarah O’Meara/Sixth Tone

When Chen started working at the center 11 years ago, many doctors did not know about autism. “Today, diagnostic tools and methods are better, but they still aren’t standardized,” he says. “Most Western countries have uniform standards, but in China diagnostic methods differ from one province to another. A lack of uniformity means that some children may never be diagnosed, while others could receive the wrong diagnosis.”

Professor Wang is acutely aware of this problem. The first part of her study involves training hundreds of medical staff in eight cities across China to screen for autism according to international clinical standards, with the end goal of collecting standardized data from geographically distinct locations. But despite the benefits of getting an early diagnosis for their children, some parents are reluctant to participate in the team’s screening sessions. “Parents want to keep the illness a secret,” says Wang. “They’re afraid of a positive diagnosis and the stigma it brings.”

Wang says she and the Fudan researchers often resorted to going directly to families’ homes. “Most of the children we’re looking for are not in primary schools,” she explains, “so it’s tough work for us. With the help of the local government, the police, and healthcare institutions, we found the addresses of unaccounted-for children and went to their homes. But sometimes the parents refused to talk to us.”

A third of parents whose children are in school also declined to fill out the questionnaires handed out by Wang’s researchers. “They simply don’t want the diagnosis,” she says. Wang hopes that the final results of her study will demonstrate the need for government allocation of more resources to schools and communities to better meet the needs of autistic children.

In some developed countries, there are schools that offer inclusive education — where autistic children and non-autistic children learn side-by-side with help from teachers and supervision from support staff. These schools do not exist in China, despite overwhelming evidence that they provide an environment in which autistic children can succeed, even thrive. Once Chinese children are diagnosed with autism, it is extremely difficult for parents to get them the help they need. Even in first-tier cities such as Shanghai, there are only a few specialist centers, and all of these are overburdened by high demand.

For families searching for a school that offers early intervention and rehabilitation for children, the average wait time from registration to treatment is two years. According to Chen of the Qing Cong Quan center, this is a serious problem. “If children miss out on that brief window, they may never have the chance to go to kindergarten or primary school, and parents are faced with the possibility of a lifetime of regret.”

For Chinese parents with lofty expectations for their children, the diagnosis of autism can feel like an undeserved punishment: One day you are dreaming about your son or daughter going to university, and the next you are struggling to accept that they may never lead an independent life.

Huang, who describes herself and her husband as “highly educated,” says she always expected her children would go to university. “But now I realize that Isaac may not have this opportunity,” she says. “It has taken me a long time to accept.”

Additional reporting by Wang Lianzhang.

(Header image: A boy looks out of a window at a center for autistic children in Shanghai, March 22, 2013.  Gao Jianping/Sixth Tone)