Posted by Michael Rosanoff, M.P.H., associate director of public health research and scientific review, and Andy Shih, Ph.D., Autism Speaks vice president of scientific affairs
As the readers of this blog know, the International Meeting for Autism Research (IMFAR) is being held in Toronto, Canada, this week. (See more coverage here.) It is the first time in the last four years that IMFAR is being held outside of the United States, though it is also the sixth time in seven years that the meeting is being held in North America. It is no surprise that while IMFAR does attract autism researchers from around the world, only 13 percent of INSAR (International Society for Autism Research) members are from outside of the U.S., U.K. and Canada. Of the nearly 1300 members of INSAR, only 23 are from low- and middle-income countries.
This year, INSAR has an invigorated interest in changing these numbers. For the first time, a Special Interest Group with a purely international focus was introduced to the agenda. It was the center of attention on Friday. More than 100 investigators joined the early morning session to quench their thirst for knowledge that could be applicable or adaptable to meet the needs of autism communities from their home countries, rich or poor. Co-chaired by Mayada Elsabbagh, of McGill University, and Petrus de Vries, of the University of Cape Town, “Global Knowledge Translation for Research on Early Identification and Intervention in Autism” focused on sharing research findings in early detection and early intervention to countries with vastly different access to resources and expertise.
To give a sense of the challenge, consider Africa. This continent with more than a half-billion children has only 50 registered child psychologists. We discussed training to share knowledge and build services. In countries where highly trained autism service providers are in short supply, training of community health workers and parents appears to be a clear route to helping bridge service gaps.
We also discussed packaging autism health service programs with programs for other developmental disabilities or mental health conditions. This appears to be especially important in places where mental health services are generally overlooked or public health needs beyond autism are particularly great. In this way, we hope that the delivery of autism services can have a bigger impact and better gain the support of local governments and health agencies.
Presentations from Europe, South Asia, the Middle East and Africa, demonstrated that, despite vastly different cultures and healthcare systems, countries face similar challenges in raising awareness and capacity for services and research.
This was the first time that an official global session had been held at IMFAR. However, the demand for international perspective has been growing since IMFAR began 11 years ago. Since 2006, Autism Speaks has supported IMFAR networking meetings for investigators interested in international challenges to autism research. It began with an initiative with the CDC to explore autism prevalence and risk factors through research around the world. As a result, Autism Speaks funded the first prevalence studies in India, China, South Africa, Korea and Mexico. A special international issue of Autism Research highlighted some of these exciting projects this month. (See Amy’s related blog.)
In 2008, Autism Speaks launched the Global Autism Public Health Initiative (GAPH). For the last three years, we’ve held a GAPH networking meeting at IMFAR. This year, like the last two, the meeting had a “sellout crowd” of more than 80 investigators from over 20 countries.
GAPH strives to help underserved autism communities around the world. It does so by helping develop and implement feasible, effective and sustainable programs for enhancing autism awareness, research and health services.
This year’s GAPH meeting focused on projects in Albania, Ethiopia, South Asia, Taiwan/Province of China and the United States. These projects are developing innovative, model programs of autism health service delivery to reach low-resource and underserved populations. (You can explore Autism Speaks global research using our Grant Search.)
Perhaps not surprisingly, much of the autism research to date has been conducted in high-income countries and among populations with generally greater access to autism services. Very little information exists on how to bring services to the developing world as well as underserved populations in high-income countries. We see the clear need for innovative and culturally appropriate approaches to training and service delivery. It is demonstrated by the growing demand for knowledge and by the growing participation of international researchers at IMFAR.
In 2013, IMFAR will be poised to attract an increasingly international audience. Our meeting will, for the first time, be in mainland Europe – San Sebastian, Spain. We hope that IMFAR continues to become more accessible to international participants, and we commend the efforts of INSAR to make this possible. Not only will this help deliver answers to communities around the world. We also look forward to learning from research in communities different from our own. It is quite possible that this research will uncover answers to some of the challenging autism questions that continue to challenge us here at home.
Images provided by Andy Shih.