Opening up on autism

World Autism Day was on April 2, and to commemorate the occasion, buildings in Shanghai and Beijing lit up for the cause. Liu Zhihua and Nick Compton tell us more about this still mysterious condition in China.

It was an occasion to be blue, as the sixth World Autism Awareness Day fell on April 2.

But in China, the autism community has reason to cheer as more effort is invested to understand more about the condition.

One 32 million yuan ($5.15 million) project was launched last November, by the Ministry of Health and the Children's Hospital of Fudan University in Shanghai, to estimate the prevalence of autism in China and create universal protocols for screening and treatment.

Since the first reported autism case in the Chinese mainland in 1982, society's understanding and acceptance of the disorder has been evolving, making life for families with autistic members easier, but still far from ideal.

Zhang Zhengwei, a mother to a 20-year-old autistic son in Beijing, finds life now very different from what she imagined it to be.

The family's first priority is the safety and happiness of their only child, and her sacrifices are too many to list.

Still, Zhang is at peace.

"Things have been much better than in the past," Zhang says. "People know about autism, and there are a lot of centers offering help."

When her son was little, there was still widespread ignorance about autism, Zhang says, and the family did not get an accurate diagnosis until the child was 5 years old.

Zhang is not alone.

Autism, one of the world's fastest growing developmental disorders, has no cure. The only way to reduce damage is to get children programmatic education and intervention as early as possible, which may help to teach them self-help skills and lessen disruptive behavior.

Only one or two decades ago, autistic children in China usually failed to get an early diagnosis.

Even when parents had their child diagnosed with autism, they were clueless as to how to deal with the situation, because there were few institutes providing education and intervention.

Zhang Zhuo, in his 40s and a native of Jiujiang, Jiangxi province, knows this from experience.

Within a few months of his son's birth, Zhang Zhuo realized something was wrong. The baby seemed indifferent to his parents' attention and refused eye contact.

Aged 5, the son was diagnosed with a disorder Zhang Zhuo had never heard of - autism. The diagnosis changed Zhang's life.

"The first time I knew what autism meant, I felt as if the sky had fallen on me," Zhang Zhuo says.

He enrolled his son in a costly private institute in Wuhan, Hubei province, and traveled every weekend to see him.

In 2004, motivated by the inconvenience of traveling and the economic burden, Zhang Zhuo established his own training center in Jiujiang, which grew fast.

He got help from Star and Rain, now one of the most celebrated private autism facilities in China, founded in 1993 by Tian Huiping, a mother to an autistic son.

Zhang Zhuo's success was bittersweet.

"Parents like me founded training centers and other facilities. We had no choice. There was no support elsewhere, and we had to help ourselves," Zhang Zhuo says.

Through the relentless effort of parents like Zhang, the situation has changed for the better.

Hundreds of facilities for autistic children have sprung up all over China and many local governments now subsidize families of children with autism.

The public is also more tolerant and compassionate toward the autistic, Zhang Zhuo says.

Fang Jing, mother to a 22-year-old autistic son, and founder of Elimautism, an autism facility in Qingdao, Shandong province, agrees.

"People used to be ignorant of the condition," Fang recalls. "Most people blamed the parents for their children's autism."

Many thought autistic children became that way because their parents spoiled or abused them, or because they did something indecent and fate worked its course. Parents of autistic children were afraid to take them out in public because of the stigma.

Now, with easy Internet access, and the effort by the government and autism community to spread autism-related knowledge, more people know about the disorder.

But there is some concern about the number of privately run autism institutes in China.

Jia Meixiang, one of the most reputable experts in autism diagnosis and intervention in China, says government should be the prime service-provider to autistic people, not society.

Many private institutes lack sufficient resources and expertise, and may end up doing more harm than good. Besides, with parents willing to pay any cost for their children, this is also fertile ground for fraud, Jia notes.

She says the government should at least establish strict admission criteria for service providers, and enforce standards on fees, if it cannot provide the service through a public system, Jia says.

It is hoped that the recently launched national survey will help form the foundation of a national database, and enable the government to better support the autistic population, according to Wang Yi, the director of the survey.

Contact the writers through liuzhihua@chinadaily.com.cn.

(China Daily 04/03/2013 page19)