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Autism Speaks at Autism-Europe

Posted by Andy Shih, Autism Speaks' senior vice president of scientific affairs. On Sept. 27, Dr. Shih delivered a keynote address on Autism Speaks global scientific efforts at the International Autism-Europe Congress, in Budapest.

This year marked the first time that Autism Speaks officially participated in the triennial congress of Autism-Europe, an organization representing an estimated 5 million individuals with autism and their families. The association brings together more than 80 autism advocacy associations from 30 European countries. Every three years, it convenes this international conference to bring autism researchers and families closer together.

This year drew more than 1,500 participants, including representatives from 73 countries around the world. The diversity was impressive.

In my keynote address, I described Autism Speaks Global Public Health Initiative and discussed Autism Speaks' active support of the growing global autism movement. I also had the pleasure of chairing a scientific symposium titled “Genes, Body, Brain.” During this session, researchers and families discussed some of the latest findings from European research. This included innovative treatment methods such as new applications for gene-guided medical treatment and preliminary findings on methods for restoring the balance of neurotransmitters in the brain.

Amy Daniels, Autism Speaks' assistant director for public health research, gave a presentation on our Light It Up Blue campaign. Amy opened by thanking our European colleagues for helping make Light It Up Blue such an international success. We were also delighted to learn that much more of the world was “lighting it up blue” than we’d realized – particularly throughout Southeastern Europe.

Again and again, we heard representatives of advocacy groups express their strong desire to work more closely with Autism Speaks. Clearly, we all share the same goals. Yet it’s also become clear that each nation must set its own priorities in meeting its autism community’s needs.

In Sweden, for example, persons with autism have the benefit of an encompassing social welfare system that provides lifelong care, housing and employment support. This has allowed their autism community to focus on advocating for greater rights on a level less common outside of Scandinavia. Yet our global efforts also include countries where many human rights are not widely respected and autism is little understood or acknowledged.

I am reminded that in all our global collaborations, we must embrace such differences as we share opportunities for autism advocacy. This is one of the great advantages of our Light It Up Blue campaign. It has become a tremendous awareness tool that does not force any country or community into a prescribed action or goal. Rather each autism community can use it to advocate for their priority needs  

Amy and I came away from Autism-Europe appreciating that our participation helped the European autism community better understand Autism Speaks’ strategy and activities in a global context. They, in turn, strengthened our tremendous respect for each country’s unique priorities and values. Our interaction with the European autism community will enhance all of our abilities to do more for individuals and families living with autism in every country, including our own.