It crushed another Korean mother — twice. First, she said, when her son received the diagnosis, and again when friends saw it as a sign that she herself was sick. To cure him, they said, she needed psychotherapy.
Sun Young Ko, of Forest Hills, whose 8-year-old son, Jaewoo Kwak, was given a diagnosis of autism 18 months ago, said her own mother refused to discuss her grandson with relatives or friends. "She's kind of hiding," Ms. Ko said.
Raising an autistic child is hard enough, let alone raising one in a culture in which the stigma surrounding autism still runs high. Now, inspired by a 2011 study of a South Korean city that found relatively high rates of autism, a leading advocacy group is teaming with churches, doctors, schools and news organizations in Flushing, trying gingerly to bring Korean parents around to the idea that if there is something unusual about their child, concealing it and avoiding help are absolutely the wrong things to do.
"More so than other populations, Korean-Americans really measure their own self-worth, and the worth of the family, in terms of what the child is able to achieve and what the child means to the family," said Roy Richard Grinker, a professor of anthropology at George Washington University and the senior author of the South Korea study.
"If I have a child with autism, there is no effect on our house value, on the ability to make friends and on an ability to get promoted at work," said Dr. Grinker, who wrote the book "Unstrange Minds: Remapping the World of Autism" about life with his autistic daughter, Isabel, now 21. "A lot of Korean families fear that."
It is a crucial moment for autism across the United States. The number of children who receive a diagnosis of autism has been rising for years, without any consensus about why, other than increased awareness of the condition. At the same time, autism itself is being redefined: the newest edition of the country's manual for mental disorders, released weeks ago, collapsed some categories of autism, including Asperger syndrome, under the umbrella of "autism spectrum disorder." Some experts have predicted the change will lead to fewer diagnoses, and hence cuts in public spending on therapy and special education.
In New York City, the number of public school students classified as having autism this year, 10,199, or roughly 1 percent of enrolled students, is up 50 percent from four years ago, according to the city's Education Department. Diagnoses among Asian students have also jumped. But while they make up 16 percent of the school system, they account for only 8 percent of those with autism diagnoses.
The South Korea study, which was financed by Autism Speaks, the same advocacy group behind the Queens effort, screened 55,000 students in the Ilsan district of the city of Goyang. Researchers found that 2 percent of them were autistic, but that two-thirds of those students had not previously received a diagnosis or any psychological or special education services. The prevalence was surprising, because it was nearly twice the rate reported in the United States, according to the Centers for Disease Control and Prevention. A similar study is under way in South Carolina.
The Korea study attributed the large number of undiagnosed cases to the stigma of autism. In recent interviews, sometimes through translators, Korean mothers of autistic children in the New York area opened up about their experiences. Several said the diagnosis strained their marriages. One, Mee Hee Kim, said it contributed to her divorce. The mothers also described the subtle ways that they and their children were shut out of normal social or familial encounters, a problem parents from many cultures report, or how they isolated themselves, retreating from invitations to dinner parties or play dates.
Some also worried that their autistic children's siblings would struggle to find spouses in the Korean community. Ms. Ko, 42, the mother of Jaewoo, said the sadness led her to contemplate suicide, though she never attempted it.
Often, a diagnosis leads to guilt.
"In my experience, so many people ask me: 'Did you do something wrong? Do you guys fight each other in front of the kids?' " said Anna Im, the mother of a 14-year-old autistic boy. "Koreans believe these little things affect the child and they become autistic."
The outreach effort in the Flushing area, where the bulk of the city's 90,000 Korean residents live, began with a round of interviews in the community and an adaptation of autism literature for Korean readers. In late April, the local Korean news media were briefed on the project. Then the translated autism materials were spread to 60 pediatricians, preschools and early childhood centers.
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