Message from the INSAR President - October 2017
Monday, October 30, 2017
Posted by: John Aliberti
INSAR President’s Message
I felt it was a huge privilege to attend the Africa Regional International Meeting for Autism Research (IMFAR) in Stellenbosch in South Africa, 7th-9th September 2017. It was held in the beautiful grounds of the Spier Wine Estate, some 45 minutes from Cape Town, and was a part of the Congress of the South African Association of Child and Adolescent Psychiatry and Allied Professions (SA-ACAPAP).
This was the second ever Regional IMFAR, the first being in Shanghai, China in 2015. The Regional IMFAR meetings are a very high priority for INSAR, since the Annual INSAR conferences are mostly held in North America or (every 4 years) in Europe, but INSAR aspires to be truly international. Organized by Professors Petrus de Vries and Naoufel Gaddour, the Africa Regional IMFAR was a huge success. Many important lessons emerged.
First, Africa is home to 1.2 billion people, across 54 countries, approximately half of whom are under 18 years old, so are classed as children. If we assume autism occurs at the same prevalence rate there as has been established in other countries, of around 1%, this would equate to approximately 12 million autistic people in Africa. The vast majority of these may go undiagnosed because of a lack of trained clinicians or specialist services. Many children may not be identified because they don’t go to school (https://spectrumnews.org/news/south-african-children-autism-may-lack-access-schools/).
Second, many African countries are low and middle income, and in many communities there may be far more urgent needs to meet, such as clean drinking water, housing, sanitation, etc., This means that detection of autism and support services for autism may be way down the list of priorities, let alone conducting autism research.
Third, how autism is understood in different cultures may be very different, and the tools used in Western, high income countries may not translate in African, low income countries (https://spectrumnews.org/news/studies-highlight-need-adapt-autism-tests-african-cultures/).
Fourth, there are a small number of clinicians in Africa who work with autistic people and who are interested to develop autism research. INSAR needs to see how to support such individuals, perhaps through mentoring or imaginative funding schemes, in order to enable autism research in Africa (and other low income countries) to grow.
Fifth, there were some terrific keynote talks, with important take-home messages. Professor Roy Richard Grinker, Director of the Institute for African Studies and a parent of a child with autism, spoke about stigma, and looked at this from an anthropological perspective, as a social process, cross-culturally. He questioned whether autism should be seen as a mental illness, and reminded us that like all diagnostic labels, autism is a social construction. How it will be understood will therefore be highly culturally variable.
Professor Linda Theron, Department of Educational Psychology at the University of Pretoria, spoke about resilience, which she argues requires the presence of significant adversity. Her talk was more part of the SA-ACAPAP, rather than the Regional IMFAR, but had huge implications for all young people. She concluded from her study of teenagers in poor communities that the importance of love from a mother-figure is a key predictor of good outcomes among such children.
There were also exciting talks from INSAR’s past presidents Professors David Amaral (on the Autism Phenome Project) and Geri Dawson (on early detection and early intervention of autism).
Finally, it was apparent that African clinicians and aspiring researchers working in the field of autism were so pleased to have the opportunity to come together, to discuss their work and exchange ideas, hear latest research, and forge new collaborations. Ideas were flowing from the poster sessions and symposia.
I look forward to the next round of Regional IMFAR applications (details will be released in early 2018) and the third such conference, in a part of the world that would really benefit from having a light shone on the autism research they currently do and aim to do. In the meantime, do consider coming to the INSAR 2018 Annual Meeting, May 9-12, in Rotterdam, Netherlands.
INSAR President 2017-2019
Cambridge University, UK
Published online in Wiley Online Library (wileyonlinelibrary.com).
2017 International Society for Autism Research, Wiley Periodicals, Inc.
INSAR President’s Message – October 2017
Autism Research, 10:1716. DOI: 10.1002/aur.1876