title: "Communities" in community engagement: lessons learned from autism research in South Korea and South Africa.
abstract: 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.
authors.affiliation: Department of Anthropology, George Washington University, Washington, D.C., USA.
authors.forename: Roy Richard
authors.initials: RR
authors.lastname: Grinker
authors.forename: Nola
authors.initials: N
authors.lastname: Chambers
authors.forename: Nono
authors.initials: N
authors.lastname: Njongwe
authors.forename: Adrienne E
authors.initials: AE
authors.lastname: Lagman
authors.forename: Whitney
authors.initials: W
authors.lastname: Guthrie
authors.forename: Sheri
authors.initials: S
authors.lastname: Stronach
authors.forename: Bonnie O
authors.initials: BO
authors.lastname: Richard
authors.forename: Shuaib
authors.initials: S
authors.lastname: Kauchali
authors.forename: Beverley
authors.initials: B
authors.lastname: Killian
authors.forename: Meera
authors.initials: M
authors.lastname: Chhagan
authors.forename: Fikri
authors.initials: F
authors.lastname: Yucel
authors.forename: Mwenda
authors.initials: M
authors.lastname: Kudumu
authors.forename: Christie
authors.initials: C
authors.lastname: Barker-Cummings
authors.forename: Judith
authors.initials: J
authors.lastname: Grether
authors.forename: Amy M
authors.initials: AM
authors.lastname: Wetherby
mesh_terms: D000293:Adolescent; D002648:Child; D002653:Child Behavior Disorders / Q000175:diagnosis / Q000453:epidemiology / Q000208:ethnology / Q000523:psychology; D002659:Child Development Disorders, Pervasive / Q000175:diagnosis / Q000453:epidemiology / Q000208:ethnology* / Q000523:psychology; D002675:Child, Preschool; D003431:Cross-Cultural Comparison; D003430:Cross-Sectional Studies; D057210:Delayed Diagnosis; D003906:Developing Countries; D004519:Education, Special / Q000639:trends; D005544:Forecasting; D006297:Health Services Accessibility / Q000706:statistics & numerical data; D006301:Health Services Needs and Demand / Q000639:trends; D006801:Humans; D007223:Infant; D056910:Republic of Korea; D012106:Research; D012111:Residence Characteristics; D057545:Social Stigma; D013019:South Africa