By Ling-Mei Wong
One in 88 American children are affected by autism, according to the Centers for Disease Control and Prevention. That makes autism more prevalent than juvenile diabetes, pediatric cancer and pediatric AIDS combined. And yet autism remains misunderstood, and is considered an incurable curse.
“Many parents ask, ‘What’s the recovery rate? What are the chances our child functions like a typical child and interacts with his peers?’” said Khanh Ngan Hoang, a Vietnamese-American psychologist.
Autism spectrum disorder is a complex neurological condition marked by impaired social skills and communication. Children have restricted interests or repetitive behaviors, such as turning on lights or opening and closing doors repeatedly. It is four times more common in men, with 80 percent of the diagnosed being boys.
A crucial part of autism treatment is diagnosis — the earlier the better. Autistic children under 3 who completed 40 hours a week of applied behavior analysis (ABA), an intensive evidence-based intervention, were able to enroll in mainstream kindergarten classes. However, Asian communities face stigmas that prevent children with developmental disabilities from being assessed and treated.
“There are a lot of cultural barriers I see in the Asian American community that prevent help-seeking,” Hoang said. “Shame is a big concern. Saving face also has a lot of bearing on the Asian community. Asians are more apt to seek medical assistance rather than mental assistance because of a lack of research on mental health.”
Research shows children from non-English-speaking families are less likely to be identified for screening and evaluation, and are often diagnosed at later ages than children whose parents are proficient in English. Hoang is working with these families to ensure children have access to the early screening and the intensive interventions.
“ABA involves the parents heavily,” said Hoang, who is a clinical supervisor for advanced doctoral students in psychology the Center for Autism and Related Disorders (CARD) Assessment Center. “It assumes the parents are proficient in English, which would facilitate treatment better than for parents with language barriers. Typically, a team would come to the parent’s house, do training with the child and ask the parents to generalize those skills.”
While ABA treatment can be taxing and intrusive, it makes a real difference to affected children. Medical insurance covers ABA and advocacy groups such as Autism Speaks raise funds for families who cannot afford the co-payments.
“Every cultural belief has something to it,” Hoang said. “Some believe you’re born with predetermined fate, which prevents you from getting help or changing. Fear is real.”
Treating autism is a team effort. While the child is the one diagnosed, having ABA therapists and advisors at home for 40 hours a week requires the whole family’s support. A 2009 analysis by CARD found 38 cases of recovery from autism using ABA.
“We need the parents’ involvement and willingness to accept treatment,” Hoang said.
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