By Cordelia Ross
I was aware that China was a traditional, collectivistic, developing country before I arrived here, but I had no idea what that would mean for people with autism and their families. Turns out, there is a very prominent effect of culture on the view and treatment of people with autism.
In China, there is no tolerance for anything “abnormal”.
At school, individuals’ unique talents are not sought out and encouraged. In fact, there is no such thing as “the individual”. Unlike in the United States, where personal interests and talents are discovered at an early age and nurtured, everyone in China is expected to perform at the same level. There is no special class for “math people” or “art people” or “music people”. Everybody must be equally good at math, at art, at music. Differences are frowned upon.
Which is why children with autism are not accepted into kindergartens or schools. If they can’t work in the classroom like the other students, they must not be in the classroom. If they stand out in any way, either by their appearance (students in China follow strict rules for uniforms, shoe color, even hairstyles) or their behavior, they are seen as a distraction to the other students and hinder their learning. Even the few special education schools that do exist in China cater to the hearing- and visually-impaired and those with intellectual disabilities; they lack the knowledge and skills to educate children with autism. Autism (孤独症, literally “the loneliness disease”) is still a new term in China, and there is very little awareness of the condition. Children with autism are therefore rejected from both the mainstream and special education system. Parents see this as a complete failure; without education, can their kids still become functioning members of society?
There is an important cultural element at play here. In China’s collectivistic culture, everyone must conform to the norm and contribute to society at large. Parents of autistic children believe that their children 1) don’t fit in, and 2) cannot contribute to society. But who is and what is really “normal”? And what exactly constitutes contribution to society? That’s another discussion in and of itself.
Because they cannot attend school, staying home becomes the only option for most children with autism in China, putting tremendous pressure on their parents. Fortunately, because extended families in China tend to live together, children with autism are often cared for by their grandparents. However, they may still lose all chances of developing any potential talents that they may have had. Furthermore, the Chinese government does not provide insurance or any form of assistance for the disabled. This is why parents are so intent on “normalizing” their children. Society does not accept their children’s stereotypies and atypical behaviors, so parents have difficulty accepting them as well.
I have been a volunteer at Stars & Rain for just over two months now. Founded in 1993, Stars & Rain was the very first autism center in China. It is unique in that instead of educating the children themselves, it educates their parents through an 11-week intensive training program. Because of the inadequate provision of care for autistic children in China, it would be impossible to directly educate more than a fraction of the autistic children in the country. To get around this problem, they focus on giving parents the skills to educate their own children.
Working at Stars & Rain has been an incredibly eye-opening experience, and I have met many inspiring children and teenagers, their teachers, and their families. I am looking forward to sharing my observations and their stories with you. Thank you, Age of Autism, for giving me this opportunity.
Cordelia Ross is a recent Middlebury College graduate with an interest in autism. She spent several months volunteering at the Beijing Stars & Rain Education Institute for Autism and had the opportunity to work with children with autism in China and listen to their families' stories.