Q&A: Dr Mayada Elsabbagh on the Autism Research Training Program
Dr Mayada Elsabbagh
Interested in the ‘common ground’ bringing together researchers and the communities in which their findings can have an impact, Dr Mayada Elsabbagh from McGill university, Canada, coordinated researchers across the world to understand more about what we know – and don’t know – about the prevalence of autism.
How did this work come about?
This paper was the scientific, peer-reviewed version of a report for the World Health Organization. The project aimed to assemble evidence from around the globe on a number of questions around autism. We were asked to look at prevalence using a systematic review methodology.
Why is prevalence important?
In research we tend to focus on a very narrow subset of the human population, by virtue of where we’re actually conducting the research. So, most studies up until the time we did this review came from small subsets in high-income countries. Prevalence gives you an insight into the true burden of autism in different countries and so is critical for policy makers to make informed decisions.
How did you do this work?
We went to our wider research networks and invited people from different countries to contribute to the systematic review. We asked them to take their standard, mainstream search-engine approach but also asked them to use search engines that we may not have used before – those in different languages or that might highlight literature that has not made it to the forefront of autism research. For example, if you look at the main search engines in the West, you may think there are no estimates of prevalence in China; that’s just not the case.
What about places with few studies?
In areas where there was very little capacity for research we tried to get the perspective from people on the ground, ensuring any studies that had been done were accounted for. We appraised all studies to ensure they met a few standards. Those that didn’t were still mentioned in the paper, because we wanted to be as comprehensive aspossible and bring these changes to the consciousness of the wider research community.
We couldn’t find any prevalence studies on Africa – the entire continent – in mainstream literature, something confirmed by a team working in South Africa. We did get a lot of helpful information from the researchers describing the situation, though, who affirmed findings from the 1970s that defining features of autism in African children were comparable to observations made in the UK. We managed to address some of the mythology – that autism is a Western concept, for example.
Did anything surprise you?
This work presented some interesting investigative exercises! We ended up being able to say this is where data exists, and here is where it doesn’t,so if you’d like to make big claims, you better have evidence. Looking at the prevalence estimates that exist, we found very little evidence that there is a difference between prevalence in different geographical regions.
On a personal note, because I’m a brain scientist and not an epidemiologist, this was a really great learning exercise for me. Projects like these force scientists to contextualise what we do in a broader framework of how to resolve the challenges that confront communities in which we live as well as those across the world.
Our engagement with those communities may support evidence-based policies and, at the same time, provide important and relevant feedback to the research community about where the most pressing needs are, and some inspirational ideas to think differently around the research agenda. It’s this reciprocal process that I’m really interested in.
- Elsabbagh M, Divan G, Koh YJ, Kim YS, Kauchali S, Marcín C, Montiel-Nava C, Patel V, Paula CS, Wang C, Yasamy MT, & Fombonne E (2012). Global prevalence of autism and other pervasive developmental disorders. Autism research : official journal of the International Society for Autism Research, 5 (3), 160-79 PMID: 22495912
This article appears in issue 71 of ‘Wellcome News’.