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Grassroots Push for Vietnam Policy on Autism

A boy relaxes with lights in a 'Snoezelen' room during yoga classes for children who typically have autism, brain injuries or developmental disabilities, in Lima, Peru, Jan. 27, 2012.
Many countries around the world mark April 2 as World Autism Awareness Day, an event adopted by the United Nations in 2007 to bring global attention to autism spectrum disorder [ASD] and autism. Vietnam held its first symposium on autism last month, which many hope will lead to improved government policy on education and health guidelines for mental health disorders. It's part of the effort by parents of autistic children to push for improved care.

Despite the increasing number of special education schools in Vietnam, the country, like many in Southeast Asia, has no national policy on how to treat autism spectrum disorder (ASD).

ASD describes a group of complex brain development disorders that affect tens of millions of people around the globe, and is characterized by difficulties in social interaction and communication.

Many of those afflicted do not have access to adequate treatment. According to Dr. Nguyen Thi Hoang Yen, vice director of the Vietnam National Institute of Educational Sciences, however, there has been a growing understanding of the condition among health professionals in Vietnam in the last few years.

“I confess that many people with autism were in the hospital and they considered them like mad people or very severe mental disorder. In comparison with now, I think more people realize about the autism so they don’t see the autism like a pure mental disorder,” said Yen.

Parents step up

Yen said the change is partly because of improvements in the health care system, especially for children, and access to research done in other countries. But the driving force has been parents.

In March, scientists from the United States, along with officials from the ministries of health, education and labor, took part in a symposium that many people hope will be the first step toward setting a national framework to help people with ASD.

Yen says the symposium was largely initiated by the Hanoi Club for Parents of Children with Autism. The club arranges workshops with local and foreign specialists and maintains a support network for parents.

“In the year 2002, we established the first parents club for the children with autism in Hanoi. At that time were only 40 families come together with some professionals in special education and now it’s more than 500 families,” he said.

One parent, who identified himself only as "Hung," said he and his wife first noticed there was something different about their son when he was one-and-a-half years old.

“Normally when you talk to a boy or a girl normally they have eye contact, they listen and they react, like smiling, whatever. However, with my boy I realized a problem with this. Even when I said something he didn’t care and he act by himself,” said "Hung."

They took him to the hospital for tests and were told three months later that their son has ASD. The doctors told him because their son was still very young all they could do is interact with him as best they could. When he was three or four they could make a better assessment of what he needed.

Varying treatments

Instead, Hung and his wife sought information from online forums and attended club meetings to learn what autism was and what they could do about it. In the last two years the couple has tried a variety of different approaches, but says the number of methods available can be very confusing.

Autism specialist Tony Louw is director of Learning Strategies in Ho Chi Minh City, which offers intervention services for adults and children with developmental delays. He said as countries work to improve policies for mental health, pressure from parents often is a catalyst for government action.

He added that in his six years in Vietnam, parents have become a lot more active in seeking information, mostly through the Internet.

“What we find is that explaining about diagnosis of autism is a lot easier than explaining about other difficulties that their child might be experiencing," said Louw. "Because those parents might be bringing to the table some background and understanding on the fact that autism already exists and what it might actually look like. And that’s been a big change while I’ve lived here in Vietnam.”

Local media report the number of people being diagnosed with autism in Vietnam has increased in recent years. It is unclear if that is from improved reporting methods, though, or an actual rise in the number of affected individuals.