In December 2010, Autism Speaks joined the Albanian Children Foundation and the Albanian Ministry of Health to develop a regional partnership that can advance autism services and research in South-East Europe. At that meeting, members of five ministries of health (Albania, Bosnia and Herzegovina, Croatia, Macedonia and Slovenia), the Albanian Children Foundation and Autism Speaks pledged to collaborate with support from the World Health Organization (WHO).
Specifically, the newly formed South-East European Autism Network (SEAN) pledged to:
- Raise public and professional awareness in the region
- Provide information resources for parents and professionals
- Collect public health data on the locations of individuals with autism
- Conduct professional training in the areas of diagnosis, clinical management and early intervention
- Provide evidence-based services for both children and adults
- Support the establishment of a regional committee to meet biannually with the goal of developing guidelines and recommendations on public health and autism
Over the last 12 months, Autism Speaks has been working with our partners in the region to ensure that the network is properly organized, identify national coordinators and grow the SEAN membership. Bulgaria, Kosovo and Montenegro recently signed the pledge; and Greece and Serbia may also soon join.
Last week, I and Andy Shih, Ph.D., Autism Speaks vice president for scientific affairs, attended the first official SEAN network meeting, held in Ljubljana, Slovenia with the support of the Slovenian Ministry of Health and the Institute of Autism Spectrum Disorder. Over 300 people attended this conference for national coordinators, local professionals, researchers and families.
Among the speakers was Antonio Persico, M.D., from Campus Bio-Medico University in Rome, who talked about the importance of multi-disciplinary approaches to help identify persons with autism. Connie Kasari, Ph.D., from University of California Los Angeles, presented on current models of early intervention and evidence for its delivery in schools. Lynn Brennan, Ph.D., an independent Applied Behavior Analysis (ABA) consultant, introduced a new video-based parent training ABA program she is developing in collaboration with Deborah Fein, Ph.D., from the University of Connecticut.
The conference was followed by a meeting for the national coordinators, the SEAN secretariat (Albanian Children Foundation) and technical advisors from WHO and Autism Speaks. Andy delivered the welcome alongside representatives from the Slovenian Ministry of Health and the Slovenian Ministry of Labour, Family and Social Affairs.
The national coordinators made short presentations on the state of autism care and research in their country. Though these countries vary greatly in the degree to which they’ve addressed autism, all face common challenges. In many cases, for example, diagnostic services are not available outside of a country’s capital city. Many countries simply lack the resources and manpower to diagnose the increasing number of children with autism who are being referred to their clinics. In addition, all the national coordinators spoke of the need to have more diagnostic, screening and awareness materials translated into their national languages. They also described a general lack of information on how many children are affected by autism within each country and a lack of public health infrastructure to identify undiagnosed children and adults.
In prioritizing SEAN’s first projects, we agreed to design a survey to assess baseline public health data from each country. This will help each country assess what it needs to improve clinical practice and measure future progress.
The network will also work together to translate Autism Speaks tool kits and other awareness materials and to increase national and regional awareness through World Autism Awareness Day and Light It Up Blue.
The network’s training priorities will revolve around diagnosis and early intervention. Autism Speaks will organize a training workshop at the Regional Centre for Autism in Albania later this year. The network also agreed to explore ways to work more closely with the WHO South-East European Health Network.
SEAN members plan to meet again in April 2013 in Sarajevo, Bosnia and Herzegovina. At that time, the national coordinators will report on the progress they have made in improving awareness and services for families within the region since these first crucial meetings.
Our efforts in South-East Europe are an important part of our Global Autism Public Health Initiative (GAPH). GAPH embodies Autism Speaks’ commitment to the global mission of improving the lives of all individuals with autism. Our international partners include families, researchers, institutes, advocacy groups and governments in over 30 countries. By working together, our partners contribute significantly and collectively to a greater understanding of autism.