Lives Changed and Lessons Learned in South Asia

Tuesday, February 19, 2013 View Comments

Posted by Michael Rosanoff, Autism Speaks associate director of public health research and scientific review

Five years ago, I was a relative newbie at Autism Speaks. We had just celebrated the first official World Autism Awareness Day that April. A few months later, we introduced our Global Autism Public Health (GAPH) initiative, and I made my first international trip for Autism Speaks – to India. This past week, as I returned home from my fifth and most emotional trip to the region, I have been reflecting on how the world of autism has changed in the five short years since the United Nations passed the World Autism Awareness Day resolution. In particular, my thoughts center on how South Asia may be leading the way.

With global prevalence exceeding 1 percent and rivaling that of HIV infection, autism is no longer the concern of a few. It affects whole communities and demands an appropriate public health response. The challenges around autism – its identification, treatment and even advocacy – speak to the complexity of the disorder.

It has long been debated whether autism and its management should be the responsibility of medical professionals or of the education sector. In fact, not only does autism require the attention of both, it’s also an issue of social welfare, human rights and even employment, among other national concerns. To this day, progress toward improving our understanding of autism and its care has been stifled by inadequate government support and a lack of coordinated action. Now, we’re thrilled to see change happening in exactly these areas, only it’s happening 7,000 miles from home.

Last week, at an event inaugurated by Sonia Gandhi, government officials from eight countries converged on New Delhi, India. They unanimously adopted the Charter of the South Asian Autism Network (SAAN) with little hesitation. The countries of South Asia have such similar challenges that they readily embraced the need to tackle them together.

Stigma, lack of awareness and limited capacity for detecting and treating autism are widespread in countries where developmental issues play second fiddle to infectious disease and hunger. But as more children than ever are surviving into adolescence, the governments of South Asia are coming to grips with the reality that more and more of their children are being diagnosed with autism.

With guidance from the World Health Organization and Autism Speaks, SAAN pledges to share ideas, experiences, expertise and resources to get the biggest bang for their buck in a region where a buck can go a long way.

What is most intriguing about this network approach is that collaboration between countries is also helping to improve systems within individual countries. India has been the undisputed leader on autism in the region. In the 1990s, a powerful and far-reaching advocacy movement helped establish a government-supported National Trust for persons with disabilities, including autism. As a result, autism awareness has continued to rise in India, as quality services become increasingly available.

Still, India’s autism movement has yet to reach its full potential. At last week’s conference, Indian Health Minister Ghulam Nabi Azad identified two distinct barriers that SAAN can help overcome. The first is greater collaboration between governments and communities in the region in their efforts to improve both autism awareness and delivery of services. The second is increased coordination between the various ministries and the community inside individual countries such as India. What led Mr. Azad to this observation was an impressive presentation made by the delegation from neighbor state Bangladesh.

In the last two years, Bangladesh has dramatically changed the landscape of autism within its borders. Now we’re seeing this transformation spread throughout South Asia. Saima Wazed-Hossain, a U.S.-trained school psychologist, envisioned changing the lives of families with autism in her home country. While we have met many passionate and dedicated advocates around the world, Saima was in a unique position to get the attention of the Bangladesh government. Her mother is the prime minister. Saima enlisted the help of Autism Speaks through our GAPH initiative and recruited the former chairperson of the Indian National Trust, Aloka Guha, who was on the forefront of India’s disabilities movement.

The plan was to understand the situation of autism in Bangladesh and establish a strategy to overcome limitations. The key to its success was inclusive collaboration. Connecting community with government every step of the way led to the completion of both a situational analysis and strategic action plan in less than twelve months. Then, rather than delegate the action plan to one ministry, Bangladesh established an autism taskforce of eight government ministries. These were led by the health ministry and included education, social welfare, labor and even finance. Each had a clear understanding of its role in the plan.

This coordination accelerated the pace of change in Bangladesh. Today, doctors and teachers are being trained, parents and communities have better access to information, and employers are creating job opportunities for adults with autism.

Now change is accelerating across the entire region and perhaps the world. On December 12, 2012, the United Nations General Assembly adopted a new resolution on autism, calling on governments to take immediate action to improve access to long-term healthcare, education and intervention for persons with autism. Bangladesh led the way by drafting the resolution.

Though 7,000 miles away from South Asia, we in North American don’t want to ignore the voices of nearly one-fifth of the world’s population. If we listen closely, its not cries for help that we hear, but voices of hope. It’s time we stop thinking of the developing world as just being a world of need. It’s also a world of opportunity. An opportunity for us to learn new approaches that may help us address the needs of our own communities, especially our underserved communities.

Just a few weeks ago in Washington, D.C., the Interagency Autism Coordinating Committee (IACC) passionately addressed the lack of access to autism detection and intervention services for under-privileged communities here in the U.S. Well, countries like India and Bangladesh have been dealing with these challenges for decades. Because of it, they have innovative strategies for transferring service skills from highly trained professionals to members of the community. Similar strategies could be just what we need right here at home.

What is happening in South Asia has the potential to change the autism world. I have been fortunate to see it happen before my eyes. While there is still much work still to be done, both abroad and in the U.S., a strong foundation has been built. I’m grateful to our partners and friends in South Asia – dedicated advocates, top-notch researchers and committed governments – for setting an example of commitment for the rest of us.