Cultural Adaptation and Translation of Outreach Materials on Autism Spectrum Disorder.

In order to connect with families and influence treatment trajectories, outreach materials should address cultural perceptions of the condition, its causes, and post-diagnostic care. This paper describes the cultural adaptation and translation of the Autism Speaks First 100 Days Kit into Korean for the purpose of improving autism spectrum disorder (ASD) diagnosis, assessment, and interventions. The goal of this study is to describe a methodology for future cross-cultural adaptations and translations of outreach materials on ASD, using the Autism Speaks First 100 Days Kit as an exemplar. The research involved two stages of qualitative interviews: unstructured individual and group interviews with 19 Korean child health and education professionals in Queens, NY, followed by structured cultural consensus modeling interviews with 23 Korean mothers, with and without children with ASD, in Queens, NY and the greater Washington, DC area. We conclude that a systematic approach to cultural translation of outreach materials is feasible. Cultural consensus modeling yielded information about numerous barriers to care, had a demonstrable effect on the translation of the kit, and was efficient when employed with coherent segments of a relatively homogeneous population and focused on a single condition.

"Communities" in community engagement: lessons learned from autism research in South Korea and South Africa.

Little research has been conducted on behavioral characteristics of children with autism spectrum disorder (ASD) from diverse cultures within the US, or from countries outside of the US or Europe, with little reliable information yet reported from developing countries. We describe the process used to engage diverse communities in ASD research in two community-based research projects-an epidemiologic investigation of 7- to 12-year olds in South Korea and the Early Autism Project, an ASD detection program for 18- to 36-month-old Zulu-speaking children in South Africa. Despite the differences in wealth between these communities, ASD is underdiagnosed in both settings, and generally not reported in clinical or educational records. Moreover, in both countries, there is low availability of services. In both cases, local knowledge helped researchers to address both ethnographic as well as practical problems. Researchers identified the ways in which these communities generate and negotiate the cultural meanings of developmental disorders. Researchers incorporated that knowledge, as they engaged communities in a research protocol, adapted and translated screening and diagnostic tools, and developed methods for screening, evaluating, and diagnosing children with ASD.