China’s Uncounted Children With Autism

Author: Ty Melillo Posted on: Wednesday, 03 June 2015 02:53 1170 Category: Latest News
China has refused to do an appropriate assessment of the number of people currently diagnosed with autism spectrum disorder throughout the country. Experts predict that the must be millions of people and children that are suffering from autism spectrum disorder yet receive no help or even acknowledgement since they haven't even been diagnosed. This has lead to several dilemmas throughout China however many families are still determined to help their children who currently suffer from asd.
When her son still wasn’t speaking at 26 months old, Li Li Juan brought him to a local hospital near their home in China’s Henan province. She was told he had mild autism. Ms. Li, a middle-school teacher, couldn’t find an autism specialist in their hometown, Ningling Xian, or a school that could handle his special needs, so she received training to teach kindergarten in order for her son to attend her class. Eventually, she discovered the Beijing Stars and Rain Education Institute for Autism, the oldest autism treatment facility in China.She and her son, now 5, in February moved here, some 400 miles from their hometown, to a temporary apartment next to the clinic for three months of applied behavior analysis, or ABA, therapy. Her son has made significant improvements, such as being able to dress himself, but Ms. Li worries about his future. “My biggest fear is [what happens to him] if I leave in his lifetime,” Ms. Li says. Her concern is shared by many in China, where an unknown number of children have an autism-spectrum disorder. There isn’t a reason to think China’s rate of autism, a developmental disorder characterized by social and communication deficits, is very different from that of other countries, experts say. That means that there likely are millions of people in China with autism, though researchers are unsure about exact numbers. China has a long way to go in providing high-quality autism intervention to everyone who needs it, experts say. For instance, ABA improves children’s communication and social skills by reinforcing desired actions and ignoring unwanted ones. In all of mainland China, there are only four board-certified behavior analysts—an internationally recognized credential—to treat autism. By contrast, there are 101 in Rhode Island and more than 3,100 in California, according to the U.S.-based Behavior Analyst Certification Board. The services that do exist in China are largely for children up to 6 years old, and there are no services for adults, says Yanhui Liao, president of the Shenzhen Autism Society. For now, many therapists in China, even at the most respected clinics, learn ABA from a book, says Karina Cheung, one of the four certified behavior analysts in China, who started the Starrysky Education and Research Center in Beijing in 2012. Awareness of autism in China has grown in recent years, fueled by parental advocates and autism organizations. The government has injected significant funds into studying the condition, and in the past decade has recognized autism as a condition in need of treatment and given affected families some financial support. Autism was the focus of Sunday’s National Day for the Disabled in China. As part of that, China’s first lady, Peng Liyuan, visited with autistic children at a Beijing rehabilitation center. Chinese scientists are becoming more active in research as well, collaborating with scientists internationally on a possible genetic link to autism, one of many factors thought to contribute to the condition. China also is carrying out its first two large-scale prevalence studies. One is an eight-city, 120,000-child undertaking expected to be completed this year, says Yi Wang, director of the department of neurology at the Children’s Hospital of Fudan University, who is involved in the project. The other an 11-city, 200,000-child study through a collaboration including Cambridge University, the China Disabled Persons’ Federation, Peking University and the National Institute of Biological Sciences, says Liping Wei, a prominent autism researcher involved in that study. Dr. Wei and her team recently created what is thought to be the first Chinese-language mobile phone app to help minimally verbal children communicate. The World Health Organization has developed an autism intervention curriculum designed to train parents to interact more effectively with their children. It is also launching a field trial in 18 countries, which will include China, says Andy Shih, who manages public health and international development projects at Autism Speaks, which is involved in the trial. And in November, the country is hosting its first International Meeting for Autism Research conference, the premier conference in the field, in Shanghai. Autism Speaks has been collaborating with the Chinese government and Chinese universities on autism research since 2011. One recent morning at Stars and Rain, one class of 10 children stood in the sunny courtyard, their parents behind them. The children were supposed to follow the teacher’s lead doing simple arm movements, while the parents learned how to coach their children. The teacher went down the line of children, squatting in front of each to make eye contact and praise any who mimicked her actions. With 11 weeks of therapy completed, nearly all of the children responded to the teacher. None of them wandered around or threw a tantrum, a common occurrence when they first arrived, teachers say.In the U.S., ABA usually is conducted between the therapist and child. But in China, there are so few specialists that Stars and Rain, like many other clinics, teaches parents so they can work with their children at home. The clinic has trained 10,000 families in the past 20 years. Its wait list can be two months long for one of its 50 spaces, says Scott Sun, executive director of the clinic. In addition to improving behavior, the clinic tries to help parents understand and accept their children as they are, Mr. Sun says. Parents sometimes grow frustrated at their children for not speaking or think they aren’t smart. The clinic tries to show the parents that their children have unique strengths, Mr. Sun says. Though treatment options are improving in Beijing and some other major cities, many people still peddle untested medications and other quick fixes that promise a cure for autism. By the time families reach Stars and Rain, many have traveled all over the country to attend programs, many of which are ineffective, says Bo Long Li, the clinic’s most veteran teacher at 22 years. Sometimes the supposed treatments are harmful. Some children show up, usually from the countryside, with scabs in their mouths from where teachers were massaging or picking at their mouths to get them to speak, Ms. Bo says. Schools often aren’t equipped to teach students with special needs. Tad Pu, a child psychiatrist at Parkway Health Shanghai and a consulting psychiatrist on an autism genetic study being conducted at Stars and Rain, gives families practical advice on how to work within the educational system. With one boy with mild autism who was about to start school, Dr. Pu felt that because the boy had the ability to be mainstreamed after many years of training, telling the teachers or the school about his diagnosis would possibly result in rejection, isolation and discrimination.
“Say his mood is more sensitive, that he’s more stubborn,” he advised.

— Kersten Zhang contributed to this article.
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