WORKING TO COMBAT THE STIGMA OF AUTISM by Al Baker, via NYTimes.com
Parents of autistic children, like Jaewoo Kwak, 8, can face stereotypes and misconceptions in the Korean-American community.
Autism, or the fear of it, chased one Korean mother from her Queens church. “I very carefully told the mom: ‘I think your child is a little different. Why don’t you take the test for autism?’ ” said the Rev. Joy Lee of the Korean Presbyterian Church in Flushing. “She told me, ‘Oh no, my child will be O.K.’ So then she quit. After that, she did not pick up the phone.”
Ms. Ko said her own mother refused to discuss Jaewoo with relatives and friends after he was given his diagnosis.
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 ratereported 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.
In a year or so, researchers will measure whether several early childhood agencies that contract with the city are seeing spikes in requests for help from Koreans grappling with autism. The hope is that whatever is learned about the disparities can be used to assist other ethnic groups and immigrant populations.
“We are trying to build a model, for outreach and facilitation, that would support immigrant families, minority families, to access services available from school systems and from cities and states,” said Andy Shih, an official at Autism Speaks who is managing the initiative.
As diagnoses of autism have become more common, some early intervention providers have taken advantage of the growth in public spending, and lax oversight, by billing for services that were not needed or never provided. Dr. Shih acknowledged that some businesses might “exploit parents scared and confused about how to best support their children.”
That is why, he said, Autism Speaks took care in translating and disseminating the literature on autism, and engaged only with providers recommended by the city’s Bureau of Early Intervention. “We want to get it right and make it useful,” Dr. Shih said.
Unscrupulous providers are not the only potential pitfall. Young Seh Bae, 48, who leads a committee of the Korean American Behavioral Health Association and is the mother of a 16-year-old boy with autism, said she worried that a focus on Koreans, in both the South Korea study and the Flushing effort, could exacerbate stereotypes.
“When you look at the different cultures, and compare the disabilities issues, why do you have to just look at Korea?” she said. “Why don’t you look at certain parts of the United States? What about Oregon? Or Oklahoma?”
And though the study in South Korea was “rigorous,” Dr. Winston Chung, an assistant professor of psychiatry at the Geisel School of Medicine at Dartmouth, said it should be viewed carefully because the researchers used tools designed by a Western culture to measure children in an Eastern one. Typical behaviors in a “Confucian society,” where the norms for eye contact, gesturing social reciprocity and expressing oneself are “profoundly different,” and where the skill of nunchi — measuring someone’s mood and desires without speaking — is valued, could be misconstrued as autistic in some cases, he said.
“In Korean culture, harmony is prioritized, and some kids growing up with this social pressure might be better off keeping their heads down and mouths shut, and these tendencies could be mistaken for autistic traits from a Western perspective,” said Dr. Chung, whose parents were born and live in Korea.
Still, community leaders acknowledge that resistance to autism diagnoses “is a continuous problem,” said Assemblyman Ron Kim, a Korean-American who grew up in the Flushing area.
But it is better than a generation ago, he said, when families thought autistic children were possessed, “where they were literally demonized.”
- Autistic child’s breakthrough gains worldwide fame (kvue.com)
- David Mitchell: learning to live with my son’s autism (guardian.co.uk)