Challenges and Innovation in Autism Research Approaches in South Africa

Background: Autism research in South Africa faces daunting obstacles, including lack of prevalence data for autism and other developmental disorders, and lack of funding for chronic, non-communicable diseases that do not directly lead to child mortality. Potential participant cohorts are often not well identified, are dispersed over a large geographical area, and are linguistically and culturally diverse. This challenging context calls for adaptations to the traditional research methods and processes used in the Global North.

Objectives:  This presentation will discuss the challenges to expanding autism research within South Africa, as well as the promise that research on this multilingual, multicultural and genetically-diverse, yet understudied, autism population holds.

Methods:  The presentation will draw on cognitive, survey, and behavioural data collected by the Autism Research Group at the University of Cape Town, South Africa. The authors will also describe the process of starting autism research within a middle-income African country, and offer insight into the success and pitfalls of this process.

Results:  In South Africa, children are diagnosed with autism fairly late in childhood, creating challenges in identifying participants for studies on early identifiers or mechanisms in ASD, as well as studies on early intervention. Encouragingly, research on existing screening and diagnostic tools tentatively show that several of these tools are reliable for use in South African population groups. Use of these tools, as well as increasing awareness of autism generated by ongoing research studies, promises to steadily lower the age of diagnosis. An advantage to research recruitment of children with ASD in South Africa is that many school-age children are in autism-specific schools, which facilitates identification of potential participants. Regarding studies of biopsychosocial pathways in autism, the use of techniques such as magnetic resonance imaging is limited by the cost and availability of equipment and local expertise. However, lower-cost, portable devices to measure peripheral physiological processes are ideal for use in studies with limited funds or where participants are spread over vast areas. Cognitive and diagnostic-observational research are challenged by lack of data on the validity and reliability of the use of standardised tests developed in the Global North in a multilingual and multicultural society such as South Africa. In this area, the field is open for more international collaborations on the development of culturally-unbiased and low-cost or free assessment tools. In the area of intervention research, community-based interventions are more likely to be sustainable in the long term than one-on-one interventions. Inclusion of families and other stakeholders in developing research priorities and developing or adapting interventions are crucial.

Conclusions:  Africa has much to offer autism research. The diverse nature of the South African population holds great promise for better describing the complex genetic, molecular, physiological and behavioural presentation(s) of autism. It is hoped that our experiences – successes and pitfalls - in expanding autism research at the University of Cape Town fosters increased autism research in Africa.