Combating the stigma of AUTISM

awareness of the condition. At the same time, autism itself is being redefined — the newest edition of the US manual for mental disorders, released weeks ago, collapsed some categories of autism, including Asperger’s 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% of enrolled students — is up 50% from four years ago, according to the city’s Education Department. Diagnoses among Asian students have also jumped. But while they make up 16% of the school system, they account for only 8% 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% 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 the state of 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 experi- ences. Several said the diagnosis strained their marriages.

One, Kim Mee-hee, 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 child’s siblings would struggle to find spouses in the Korean community. 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 literature on autism designed 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 paediatricians, preschools and early-childhood centres.

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.

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 demonised’’.