November 21, 2006

Community Feature: Through the Storm

Stars and Rain Institute and documentary film makers spread awareness about autism

While some parents wonder how their children will care for them when they are old, others worry about how they will care for their child. By age two and a half, Feng Jiawei was different from other boys. °°He couldn't talk,°ą says his mother. °°And when we talked to him, he didn't acknowledge he'd heard us.°ą After taking him to several different hospitals in their hometown of Harbin, they were finally given a diagnosis: autism.

A developmental disability, autism results from a neurological disorder that affects the normal functioning of the brain. Communication skills, social skills, and reasoning skills develop abnormally. Although it is estimated that there are approximately 500,000 autistic people in China, it's still relatively unknown to many people. The Internet became a valuable resource to the Feng family, and eventually they found a website for the Beijing Stars and Rain Institute for Autism.

Now 5 years old, Feng Jiawei and his parents, along with 74 other families, came from across China to begin the Stars and Rain program for autistic children and their parents on August 14. At that point he was still completely dependent on his parents: he could not wash his own face, dress himself or speak. Attempts by his parents to teach him resulted in outbursts of biting, hitting and yelling.

The first few weeks of classes were challenging. °°It was chaos,°ą says Robin Aspey [photographed left, center] who is shadowing the Fengs (and another family) as part of a documentary he's directing on the Stars and Rain Institute and parents of autistic children. °°There were children just walking about °­ I was worried.°ą

The 11-week program is designed to help children acquire self-care, learning readiness and speaking skills ¨C depending on the severity of the child's case. For parents, there are separate classes on the emotional impact of caring for an autistic child in addition to workshops on teaching methodologies.

The program is based on applied behavior analysis, a systematic process of studying and modifying behavior through a manipulation of the environment. For example when a child loses his or her temper, parents are instructed to record the time and place of the incident as well as important details like other factors that led to the incident, along with the child's facial expressions and body language. Desired behavior and skills are taught by breaking them down into steps and repeating them over time.

In the ninth week of the program, Feng Jiawei's mother has noticed an enormous improvement in his behavior. °°His language skills have improved. He can say a few things now. He also respects rules and is more obedient.°ą

As the course winds down, many of the parents are unsure how they will fare without the support of Stars and Rain. °°They are anxious about going home°ą says Aspey. °°Now they have to go back to work [or find new jobs in the case of many parents who could not get 11 weeks of leave from their previous ones]. They realize that this is sort of a bubble.°ą

After returning home, parents will bear the responsibility of caring for their children alone. Drawing attention to the scant resources available for Chinese parents of autistic children is one of Aspey's goals (along with his partners Alexander Haase and Dai Yuerong) in making this documentary. Social security programs, special insurance for the disabled or financial assistance programs are virtually unknown. °°I hope [viewers'] hearts go out to these people,°ą Aspey says when asked about the impact he wishes to make. I hope that they are moved and feel the need to do something about it.°ą Ashleigh Braggs.

The documentary team still needs RMB 80,000 to professionally edit and complete their project.

To make a donation, contact the Beijing Stars & Rain Education Institute for Autism. Call 8537 3236 or visit http://www.autismchina.org./

Extracted f rom: THAT"S BEIJING