Yesterday, the New York City Korean Community Autism Project announced the release of new materials to improve early autism screening and care in New York City’s Korean-speaking community. The project is among the first to adapt, translate and evaluate materials for improving early diagnosis and intervention for autism in an ethnic minority American community.
Autism Speaks and its funded researchers developed the materials with the guidance of the project’s Community Advisory Board. The work included extensive interviews and focus groups with parents, service providers and other concerned community members. It built on existing English-language materials developed by Autism Speaks and the Centers for Disease Control and Prevention (CDC). The latter included information from the CDC’s “Learn the Signs. Act Early” campaign.
At last night’s event, project leaders presented flyers and other information developed to help the community’s parents and healthcare providers recognize the early warning signs of autism. These materials will be distributed through local daycare centers, schools and primary care offices. They are also available on the Autism Speaks website, here.
The community’s input also guided the Korean-American translation and adaptation of Autism Speaks popular 100 Day Kit. This tool kit helps families make the best use of the first three months following their child’s diagnosis. (Download the Korean version here.)
"This project is exciting news in the Korean-American autism community,” said Community Advisory Board member Sunghee Byun. “When my son was diagnosed with autism, the hardest thing was not his diagnosis. The hardest thing was a lack of awareness on autism and the importance of the early intervention in the community. I did not know where to turn for guidance. This project will be another stepping stone for the families and children affected by autism in the Korean-American community."
Closing the gap in autism diagnosis and care
Research suggests that delayed diagnosis and intervention is common in minority communities. Barriers can include language, lack of culturally appropriate care and inadequate health insurance and healthcare facilities.
“Research on Asian families in general, especially among those where English is not spoken at home, suggests delayed diagnosis and under-diagnosis of autism,” said health services researcher David Mandell, Sc.D., the project’s principle investigator. “Often this is because pediatricians attribute developmental delays to children having English has a second language.” Dr. Mandell is an associate professor at the University of Pennsylvania’s Perelman School of Medicine.
“It is increasingly clear that early diagnosis and intervention can make a tremendous difference in quality of life for children with autism and their families,” added Andy Shih, Ph.D., senior vice president of scientific affairs for Autism Speaks. “We want to spread knowledge of this in the Korean community. Early intervention has proven effective in improving IQ, language ability and social interaction. The earlier, the better.”
The knowledge gained through this project holds promise for helping other underserved populations, Dr. Shih added. “With dramatic increases in autism across diverse populations, we need reliable methods to not only translate texts into foreign languages but to make these texts meaningful in different cultures,” he explained. Reducing disparities in autism care is the overarching goal of Autism Speaks Early Access to Care initiative.
For more information about the New York City Korea Community Autism Project in Korean, click here. For English, click here. For more information on Autism Speaks Early Access to Care initiative, click here.