Autism spectrum disorder (ASD) is a neurodevelopmental disorder with a prevalence of around 1-2% worldwide. Despite the fact that 90% of individuals with ASD live in low- and middle-income countries (LMICs), less than 10% of all ASD research has been performed in these regions. In Africa, the research gap is even more stark – a recent scoping review by Franz et al (2017) found that less than 1% of the global research output on ASD came from Africa (1). The review noted that no ASD prevalence studies had been performed in sub-Saharan Africa, and almost no African studies had used standardized screening or diagnostic tools. The quality and size of existing studies were also limited. Remarkably, no early intervention studies or studies of educational systems for ASD had been performed before 2016.
In order to conduct high quality prevalence studies for ASD, there is a need for validated, acceptable and culturally-appropriate screening and diagnostic tools for the African context. Further, these tools require well-trained clinical research staff to be implemented. It is also important that once children are identified and diagnosed with ASD, appropriate interventions are available and accessible. Evidence in high-resource settings has demonstrated significant long-term improvements in ASD symptoms when young children with ASD receive early intensive behavioural interventions. Access to interventions for children and adults with ASD in Africa is limited by the lack of appropriate services which often require high implementation costs (2). Even in the Western Cape of South Africa, one of the better resourced Provinces of the country, the majority of children with ASD receive very limited intervention, if any.
The Centre for Autism Research (CARA) at the University of Cape Town in South Africa was founded in 2012 to address some of the core ASD research gaps on the continent. The CARA team is a highly interdisciplinary research group with backgrounds in psychiatry, psychology, occupational therapy, speech & language therapy, engineering, health and implementation science. The fundamental clinical research topics the team are currently focused on include: the evaluation and development of existing and new culturally-appropriate screening and diagnostic tools for global use; intervention research with a focus on parent/carer education and training as well as parent/carer-mediated interventions (which may be more appropriate for low-resource settings) (2); the investigation of health and education systems and policies and their impact on individuals with ASD and their families; and how technology can be used to tackle these issues in low-resource environments. Given the very limited research on ASD in Africa to date, the CARA team also places a strong emphasis on building research capacity and strengthening research and intervention networks across the continent (3).
The UN forecasts that 40% of the world’s children are expected to live in Africa by 2050, therefore the numbers of individuals with ASD on the continent are expected to increase substantially. It is imperative that culturally-appropriate screening and diagnostic tools and feasible and sustainable interventions are designed and implemented in low-resource environments to ensure that individuals with ASD, and their families, receive the appropriate care and assistance early and when intervention is most effective.
1. Franz L et al., (2017) Autism Spectrum Disorder in Sub-Saharan Africa: A Comprehensive Scoping Review. Autism Research, 10: 723-749.
2. Guler J et al., (2017) The importance of context in early autism intervention: A qualitative South African study. Autism, 1-13.
3. de Vries PJ (2016) Thinking globally to meet local needs: autism spectrum disorders in Africa and other low-resource environments. Current Opinion in Neurology, 29: 130-136.