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.
We have just celebrated the three year anniversary of Autism Speaks’ Global Autism Public Health (GAPH) initiative and what better way to mark this birthday than to see our first official GAPH partner open a new Centre for children with autism in Albania. Over the last two and a half years Autism Speaks has partnered with Liri Berisha, M.D., president of the Albanian Children Foundation (ACF) and wife of the Albanian Prime Minister, on GAPH-Albania and today saw the realization of her vision to provide state-of-the-art clinical and therapeutic care for Albanian families.
Autism Speaks was delighted to play a small part in the opening ceremony for the Centre. Those in attendance included the Albanian Prime Minister, Sali Bersiha, members of his cabinet, international dignitaries, local families and professionals. Mark Roithmayr, president of Autism Speaks, took part in the ribbon cutting ceremony along with Dr. Berisha and Domenick Scaglione, the founder of ACF. Then a selected audience was given a tour of the new Albanian Children Foundation Centre before everyone convened in the main lecture theatre for speeches and presentations of awards. Dr. Berisha spoke of how she hoped the new Centre would be like a “warm home” and a “comfortable retreat” for families to receive the necessary services they deserve. Mr. Roithmayr took great pleasure in announcing that as a result of a competitive grant process, Autism Speaks would be funding a two year study for Deborah Fein, Ph.D. to continue her work with ACF to improve autism screening, diagnosis and intervention for families in the region.
The new Centre is located just outside the Albanian capital of Tirana and is surrounded by lakes and mountains, creating a quiet and idyllic place for families to visit. The Centre will deliver early intervention using Applied Behavior Analysis, as well as diagnostic services by trained multidisciplinary teams. There is a large lecture room on the basement floor, which will allow up to 100 professionals to be trained at any time. On the top floor is a library of books kindly donated by the UK and U.S. research community, as well as technology to support distance learning and supervision. This will be a national Centre to serve families across Albania and will also support regional development through the South-East European Autism Network (SEAN), which Autism Speaks launched with ACF and the Albanian Ministry of Health in 2010.
Dr. Berisha was kind enough to acknowledge that much of the inspiration for the centre has come from meeting her friends Suzanne and Bob Wright, co-founders of Autism Speaks. As part of GAPH-Albania the last two and a half years have seen therapists receive a year’s training in early intensive behavioral intervention; textbooks for parents and teachers have been translated into Albanian, as has the Autism Diagnostic Observation Schedule – Generic (ADOS-G) and the M-CHAT screener. A group of pediatricians in Tirana have been trained to use the M-CHAT to screen for autism as part of a pilot study and international conferences have been held to provide basic training in best clinical practice. All this good work will be supported going forward by the Albanian Ministry of Health who signed onto a national strategy on autism in 2010.
These significant developments are the result of Dr. Berisha’s vision to improve the lives of children with autism in Albania. Autism Speaks has been honored to work with Dr. Berisha over the last few years and her contributions at our World Focus on Autism events have been invaluable. The new centre in Tirana is an amazing achievement and we hope you will join with us in congratulating Dr. Berisha and all her colleagues at the Albanian Children Foundation.
For the fourth year in a row Autism Speaks brought together first spouses and esteemed dignitaries, including ministers of health, from more than 30 countries around the globe for the Fourth Annual World Focus on Autism. The event, held on Tuesday, September 20, 2011, was part of an ongoing effort to raise global awareness and share best practices for countries, communities and families struggling with this non-discriminative disorder.
Mrs. Ban Soon-taek, wife of the U.N. Secretary-General, Ban Ki-moon, in her fourth year of attendance joined event hosts Suzanne and Bob Wright of Autism Speaks. Additional distinguished guests included event Co-host Dr. Cecelia McCarton, executive director and founder of The McCarton Foundation and the McCarton School, and emcee Sue Herera of CNBC’s “Power Lunch.”
Attendees convened at The McCarton School, which provides an educational program for children with autism by using an integrated one-to-one model of therapy grounded in Applied Behavioral Analysis (ABA) combined with speech and language therapy, motor skills training and peer interaction. “This school has given so much to our children with autism, and we wanted each of you to experience it firsthand today,” said Suzanne Wright. “It’s here under this roof that the meticulous work to connect with our children with autism takes place.”
United in a global cause, a record number of dignitaries attended, including the first spouses of Albania, the Republic of Cyprus, Finland, Grenada, Jamaica, the Republic of the Maldives, the Republic of the Marshall Islands, Namibia, Nigeria, the Republic of Palau, Saint Lucia, Saint Vincent and the Grenadines, Slovenia, Sri Lanka, and Turkey.
Guests toured the school and met with students, who made glass bead necklaces for the visiting first spouses. Later, the dignitaries assembled to learn about Autism Speaks’ global initiatives – including the annual World Autism Awareness Day celebrated on April 2 and Autism Speaks’ Light it Up Blue campaign; as well as Autism Speaks’ Global Autism Public Health (GAPH) initiative. GAPH initiatives championed by individual countries, as well as regional efforts including the South-East European Autism Network (SEAN) and the South Asian Autism Network (SAAN) were highlighted during the event.
In her opening remarks, Mrs. Ban Soon-taek welcomed the international group on behalf of her husband U.N. Secretary-General Ban Ki-moon stating, “autism touches so many in the world, no matter where they live, no matter how much money they have, no matter their religion, no matter their gender. And like a pebble in a pond, the effects of autism ripple outward to parents, siblings, and caregivers. Autism is at once deeply personal and truly global.”
Speakers at the event included distinguished guests Dr. Liri Berisha, spouse of the Prime Minister of Albania; Dr. Ante Zvonimir Golem, Croatia’s State Secretary for Health and Social Welfare; Professor Saima Wazed Hossain, daughter of the Prime Minister of Bangladesh; and Professor A.F.M. Ruhal Haque, MP, F.R.C.S, Bangladesh’s Minister of Health and Family Welfare; as well as Autism Speaks Vice President of Scientific Affairs Dr. Andy Shih. Each speaker offered remarks on the significance of fostering global partnerships in combating the global public health crisis of autism.
‘World’s First Ladies Take on Autism’ in the The Wall Street Journal.