By Dana Marnane, Vice President, Awareness and Events, Autism Speaks
I was thrilled to have been asked to participate in an autism conference this past weekend in Doha. Qatar. This wasn’t my first trip to Doha – I visited two years ago following the 2008 launch of our partnership with the Shafallah Center for Children with Special Needs. I worked with the team there on the launch of their awareness program as well as presented with my colleague Sheila to families about how to advocate for their child. That was an exciting trip and I felt I was really helping, but it was nothing compared to this visit.
The result of four years of work in the region, this conference brought together three gulf region countries to determine if they were ready to collaborate. They were! The Shafallah Medical Genetics Center , which is a part of the whole Shafallah Center, and the director, Hatem El Shanti, M.D., played host for the event. Invited were the leaders of autism research organizations in Saudi Arabia and Oman and their teams. Mohammed Al Dosari, M.D., founder and general director of the Faisal Autism House led the Saudi team and Yahya Al Farsi, MD, assistant dean of Sultan Qaboos University led the Omani contingency. Despite their differences in culture, resources and facilities, these three groups met openly to discuss collaboration in the areas of diagnosis, epidemiology, genetics and treatment. With the assistance of Autism Speaks own Andy Shih, Ph.D. and Michael Rosanoff, M.P.H., Eric Fombonne, M.D. and Joachim Hallmayer, M.D. they created working committees to address all these core issues.
Now why was this such a big, historical event? One reason is that very little research has been conducted in the gulf region – they have autism, just like every other country – but no data and answers to inform and galvanize the community. United, they will move faster and more efficiently to determine the causes, ascertain better treatments and move the whole world closer to the causes of autism. Many countries in the gulf region have consanguineous marriages – they will explore this among many other causes including environment to determine if any are potential factors in autism. They are translating and adapting diagnostic tools and early intervention methods, like the Early Start Denver Model which has shown great success in the U.S. These tools will enable earlier diagnoses, better treatments and improved outcome and also will validate our own tools, perhaps leading to even better ones. Their research will help to inform research in the U.S. and beyond. This was truly an amazing meeting and I am looking forward to collaborating with all three countries on raising awareness around their efforts to lessen the stigma that still exists there and to help accelerate their efforts. Stay tuned!!