"Communities" in Community Engagement: Lessons Learned from Autism Research in South Africa and South Korea

"Community-based research requires collaboration with the population where research is conducted. There is no one-size-fits-all method of community engagement."

Little research has been conducted on behavioural characteristics of children with autism spectrum disorder (ASD), with little reliable information yet reported from developing countries. To respond to this lack of data, the project "Engaging Communities in Research in South Korea and South Africa" undertook community-based participatory research to engage diverse communities with 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 programme for 18- to 36-month-old Zulu-speaking children in South Africa. The goal was to find supportive solutions for children with autism, while also increasing knowledge of the cross­-cultural aspects of the condition.

The researchers found that, despite the differences in wealth between these communities, ASD is under-diagnosed 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.

Country-specific processes and findings include:

• South Korea: A recent prevalence study was launched with the hope that it would help increase awareness - decreasing stigma - and expand special education services in the country. Screening by means of community engagement gave more accurate prevalence data than what would have been ascertained by exclusively using health records. The community-based methods used in this study allowed researchers to identify otherwise unrecognised high-functioning ASD children. In the study, families and teachers expressed mistrust of the medical community, as well as fear of stigma and loss of confidentiality. The researchers employed ethnographic interviews and focus groups in order to address these concerns, which had contributed to the under-diagnosis of the condition.
• South Africa: Researchers used methods of community engagement to reach low-resource and underserved populations in a KwaZulu-Natal (KZN) autism-screening programme. As in many low- and middle-income countries, early intervention for ASD is often neglected, as resources are focused on short-term survival issues. During the course of the research, interviews were conducted with parents, teachers, health care professionals, traditional healers, and clergy. These interviews explored what services are available, what should be included in the research materials, and how to translate the screening and diagnostic tools. Involvement of bilingual (Zulu/English) parents supported accurate language and cultural relevance of the evaluation tools used in the study. Two important barriers to community participation in South Africa were poverty and the AIDS epidemic. Poverty limited parents' ability to seek ASD-related medical attention unless symptoms were severe. Many children were being cared for in centres called crèches, where awareness of autism was very limited. HIV/AIDS often complicates recognition, as it can result in developmental delays. According to the researchers, the study contributed openness in discussing the topics addressed. Participants reported feeling inspired to continue discussions and build social networks to deliver better care. However, they questioned the value of an ASD diagnosis if there are few services available for treatment. Some also questioned the benefits of a "western" diagnosis vs. a "traditional" diagnosis.

The authors make it clear that stigma is a major barrier to research participation in both countries. There are also various language and cultural differences between communities, and many people do not trust researchers. Together, these issues underscore the importance of working closely with families in ways that respect their values and culture. "Successful community-based research requires knowledge about how the burden of care is distributed amongst family members, what families know or understand about services, and their ideas of advocacy and treatment." The researchers stress that culture can be the key to finding effective solutions for communities. "Community engagement as a tool to consider culture in autism management...provides opportunities to improve research processes as well as to produce meaningful solutions for communities in need."