Posted by Andy Shih, Ph.D., Autism Speaks vice president for scientific affairs, and Dana Marnane, vice president for awareness and events.
This week, Autism Speaks hosted the first meeting of the recently formed Global Autism Advocacy Leadership Network (for the sake of brevity – ALN). Members of advocacy organizations from 12 countries plus Europe attended a two-day meeting in New York City. The goals of the conference were to share best practices as well as the challenges facing each group and each country and to discuss how we can learn from each other and what we can accomplish as a group.
Each group shared what their organization does, who they serve, recent accomplishments, as well as the challenges they face. The people of Aruba, for instance, have 99 languages spoken on their small island. Clearly this makes distributing information a challenge. Many countries struggle with poverty. In Mexico, for example, 80 percent of the population lives in extreme poverty. In South Africa 47 percent live at or below poverty level, unemployment is at 25 percent and only 10 percent of the population pay taxes, so there isn’t much government funding to help.
Diagnosis across large countries is another huge challenge, as is the lack of qualified doctors and services providers. In the Philippines, they estimate that there are 600,000 children with ASD but only 10 percent of these have been diagnosed, and of the diagnosed, only 2 percent are getting care.
But there is also amazing progress being made in many of these countries. Albania has a great awareness campaign and recently opened a state-of-the-art center for providing autism diagnosis and treatment. Every Army base in Bangladesh now has a school for children with autism, thanks to their government’s efforts over the past two years. In India, they have translated diagnostic tools (with support from Autism Speaks) and are conducting studies into prevalence as well as adult issues. Last year, Japan hosted a major conference with Autism Speaks, drawing huge media attention to the issue of autism. The Philippines has launched an epidemiology study with Autism Speaks serving as technical advisors, and its autism efforts have support of the department of health. Saudi Arabia, where government agencies and foundations have invested heavily in autism research and service development in recent years, has a special card to speed access to healthcare and provide discounts for those on the spectrum. Hungary, one of a few countries in Europe with a National Strategy Plan for autism, has 500 schools for people with autism and 12 residential homes for adults. Hungary is also starting an employment program and providing parent training among other resources for families. And the list goes on.
All of the attendees were committed to continuing the discussion on how to raise awareness globally. The Light It Up Blue campaign has been hugely successful in many of these countries, and participants enthusiastically discussed how we are ready to take the next step. Efforts like theirs, around the world, will also help those struggling with autism here at home. Through our global efforts, we are learning how to deliver information in many languages using different communications strategies and vehicles. We are learning how to better support individuals and families in low resource settings such as rural communities, and to deliver treatments that are feasible, effective and affordable. In these ways we in the U.S. can likewise improve our efforts and do more for our families.
In many aspects, the meeting participants varied greatly. Some work closely with their government, others less so. Some must make do with far fewer resources than others. Many have family members touched by autism, while others are simply inspired to make a difference by the joys and challenges faced by individuals and families living with autism.
But, all of them participated in the ALN meeting because like us, they want to change the future for all those who struggle with autism. That’s what unites us. That’s what makes us brothers and sisters in this mission of change.
Countries and regions attending were Albania, Aruba, Autism Europe, Bangladesh, Brazil, Hungary, India, Japan, Mexico, Philippines, Saudi Arabia, South Africa and the U.S.
Photos from the conference below.
Suzanne and Bob Wright, co-founders of Autism Speaks, welcome meeting participants.
Mrs. Dilma Arends and Mevr. Drs. Charlotte Stopel of the Aruba
Merry Barua, director at Action for Autism in India
Members of the Global Autism Advocacy