About 95% of people with autism live in low- and middle-income countries

Founding director of the Centre for Autism Research in Africa (CARA) based at the University of Cape Town (UCT), Professor Petrus de Vries, has called for autism researchers worldwide to work in closer partnership with families and communities, and to build more capacity for autism research in low- and middle-income countries (LMIC). He delivered the opening lecture at the major annual global conference on autism, attended by 2000 people from over 50 countries this week.

Professor de Vries’ address to the International Society for Autism Research (INSAR) was provocatively titled: “What kind of research should we do and where should we do it?”, he  made two key points - Firstly, he emphasized the need for all research in autism and other neurodevelopmental disorders to be ‘socially responsive’ by being based in close partnership with family and community stakeholders. Secondly, he pointed out the stark fact that 95% of people with autism and other developmental disabilities live in low- and middle-income countries, where almost no expertise, services and research exist to support sufferers and their families.

In his address, he coined the phrase ‘disparity truth’ (the fact that most people with autism live in LMIC but most research is done in high-income countries). He challenged INSAR and the broader autism research community to deal with this inequity in the next decade, by building greater capacity in LMIC for research on autism and related disorders.

He said: “I used my research in neurodevelopmental disorders over the last twenty years to show how listening to what is important to the individuals and families who live with these disorders is the only way to make sure we do research that is meaningful and directly relevant to their lives.” He showed how his research team at UCT had put this into practice by rethinking their research priorities and strategies to ensure they did research of meaning to local communities. Prof de Vries added “It took us in exciting research directions we would never have anticipated!”

Additional Information

1) The Centre for Autism Research in Africa (CARA) is an interdisciplinary research group based in the Division of Child & Adolescent Psychiatry at the University of Cape Town. For further information about CARA, please see www.cara.uct.ac.za.

2) The International Society for Autism Research (INSAR) is a scientific and professional organization registered as a non-profit in the USA. It is devoted to advancing knowledge about autism by promoting the highest quality of research. For further information about INSAR, please see https://www.autism-insar.org.

3) The summary of Prof de Vries’ address is given below:

What kind of research should we do and where should we do it?

In 2001 the International Society for Autism Research (INSAR) was founded and held its first international conference. The 20^th anniversary of INSAR is a good time to reflect on the kind of research we should be doing in the autism and neurodevelopmental community, and to consider where we should be focusing our research efforts over the next 20 years. In this keynote, we will discuss two related research journeys. The first is the story of Tuberous Sclerosis Complex (TSC)-Associated Neuropsychiatric Disorders (TAND) to illustrate how close partnership with the TSC community shaped our research questions and research strategies. The second is the story of autism in Africa to illustrate how the realization that 95% of people with autism live in low- and middle-income countries (LMIC) led to a paradigm shift in our research.