This post is by Mark Roithmayr, President of Autism Speaks.
It is before dawn and I am about to depart Albania. What we have learned about autism, Autism Speaks, Albania, and our role in the world is almost too overwhelming and humbling to put into words.
I was there to celebrate the opening of the Albanian Children Foundation’s Regional Centre for Autism, dedicated to helping children with developmental disabilities to receive a diagnosis, appropriate treatment and services.
Liri Berisha, M.D., and her husband the Prime Minister, Mr. Sali Berisha, took every opportunity to note that without Autism Speaks and Suzanne and Bob Wright, none of this would be possible. What a statement! As I looked at the new Centre I was in awe of all they had accomplished in a country the size of Albania. What an amazing accomplishment – and the hope they are now providing to the autism community in Albania was palpable.
In between attending events and dinners, my wife and I visited Albania’s first autism center that has been seeing families the past two years. We witnessed the wonders of the first children receiving ABA therapy in Albania and the success they have had. We met with the therapists, administrators, and Ministers who are now developing the nation’s first National Autism Strategy. And then, in the new Centre, we presented to parents who literally had tears in their eyes because of the hope that is now becoming reality for their children.
The day Suzanne got the UN to unanimously approve the creation of a World Autism Awareness Day made all of this possible. One of our many achievements is making autism a global initiative. Our Global Autism Public Health (GAPH) initiative is moving this forward at an amazingly rapid pace. We are moving nations and bettering the lives of children and families around the globe – and not by ourselves, but by helping other countries to learn from our experiences and providing guidance to create their own programs.
We are one organization among many. We are largely supported by families – those who walk and fundraise, one dollar at a time, to change the world. It’s working.
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.