TY - JOUR
T1 - "Communities" in Community Engagement
T2 - Lessons Learned From Autism Research in South Korea and South Africa
AU - Grinker, Roy Richard
AU - Chambers, Nola
AU - Njongwe, Nono
AU - Lagman, Adrienne E.
AU - Guthrie, Whitney
AU - Stronach, Sheri
AU - Richard, Bonnie O.
AU - Kauchali, Shuaib
AU - Killian, Beverley
AU - Chhagan, Meera
AU - Yucel, Fikri
AU - Kudumu, Mwenda
AU - Barker-Cummings, Christie
AU - Grether, Judith
AU - Wetherby, Amy M.
PY - 2012/6
Y1 - 2012/6
N2 - 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.
AB - 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.
KW - Autism spectrum disorder
KW - Community engagement
KW - Cross-cultural studies
KW - Epidemiology
KW - Korea
KW - South Africa
UR - http://www.scopus.com/inward/record.url?scp=84862172433&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84862172433&partnerID=8YFLogxK
U2 - 10.1002/aur.1229
DO - 10.1002/aur.1229
M3 - Comment/debate
C2 - 22566396
AN - SCOPUS:84862172433
SN - 1939-3792
VL - 5
SP - 201
EP - 210
JO - Autism Research
JF - Autism Research
IS - 3
ER -