Inspiration and Progress on Autism in Southeast Europe

Tuesday, June 11, 2013 View Comments

Posted by Amy Daniels, PhD, Autism Speaks assistant director for public health research

The Southeast European Autism Network (SEAN) held its third annual meeting this month, in Sarajevo, Bosnia & Herzegovina. As many of you know, Autism Speaks played a leading role in assisting SEAN’s establishment in 2010. Then as now, SEAN’s role is to improve the lives of individuals and families affected by autism in southeastern Europe. It does so by raising awareness, enhancing research and promoting the development and delivery of effective policies and services.

This regional network has now grown to include eight countries: Albania, Bosnia & Herzegovina, Bulgaria, Croatia, Kosovo, Macedonia, Montenegro and Slovenia. (Read more about SEAN here and its role in our Global Autism Public Health initiative here.)

While each of these countries is unique, they share a number of challenges. Many have only recently emerged from war and/or the struggle to achieve independence. These are also developing economies faced with limited economic resources.

This being my first SEAN meeting, I was struck that – despite this region’s challenges – these countries have achieved astounding progress in autism awareness, services and research in just a few years.

As a group, they’ve enthusiastically embraced World Autism Awareness Day. Not only did they Light It Up Blue, they launched their own awareness campaigns. This included the ad at right from Bosnia & Herzegovina (shown here in English).

In 2011, the Albanian Children Foundation opened a Regional Center for Autism that serves as a model for the evaluation and treatment of children with autism. It also serves as a tremendous resource for autism-service providers throughout the region.

In September 2012, the First Ladies from Albania and Croatia attended the most recent World Focus on Autism event in New York City. And since the United Nations passed its Resolution on Autism last December, many SEAN countries have formally embraced autism as a national priority.

At this year’s meeting, Bosnia & Herzegovina ministers of health, education and social welfare introduced a national project on early intervention, developed with the support of UNICEF. (Together with Autism Speaks, UNICEF also co-sponsored this year’s meeting.) The project’s goal is to identify children at risk for developmental delay and provide services as early as possible. This will go far to advance identification and treatment of autism across the country.

Providers and families meet
The first day of the meeting drew health and education providers from across the region, as well as many families from Bosnia & Herzegovina.

I was struck by the enthusiasm and gratitude for new information and resources. By day’s end, many people were openly sharing their personal successes and challenges in living and working with autism.

* One pediatrician spoke about her effort to screen all children in her practice for autism.

* Another described how attending this meeting gave her greater confidence to discuss autism with parents when she had a concern about a child’s development.

* A teacher described how a student with autism was assigned to her classroom. Without experience or training, she met the challenge head on and learned all she could about how to work with him more effectively.

* A father spoke passionately about how much progress his son had made since his diagnosis. He commended the meeting organizers for taking autism seriously and making it a priority in his country.

* And a mother – who now runs a family advocacy organization in Sarajevo – expressed how much the Autism Speaks 100 Day Tool Kit helped her in the weeks and months after her son’s diagnosis. 

Autism Speaks and our Global Autism Public Health  initiative are playing a vital role in raising autism awareness and advocating for families affected by autism in Southeast European countries. I saw the clear evidence of progress, and we also learned a great deal from our SEAN colleagues at this year’s successful meeting.

Thanks and please join us!
I want to thank the Autism Speaks community for supporting this important work. Those of you in Europe and elsewhere, you’re part of our community, too! We’d love to hear more of your stories and see your comments here on our website. (You can use our comment section below.)