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Calls to Action

Sonia Gandhi: Policy "Has Not Kept Pace" With Rising Prevalence of Autism

8 Countries Unanimously Adopt Autism Charter at Conference in New Delhi

NEW DELHI, INDIA (February 12, 2013) - Yesterday, representatives from the governments of India, Bangladesh, Thailand, Bhutan, Myanmar, Nepal, Sri Lanka, and Timor-Leste, as well as Autism Speaks and the World Health Organization (WHO), came together for the inaugural meeting of the South Asian Autism Network (SAAN) in New Delhi, India. The meeting, hosted by the Ministry of Health and Family Welfare of India, with support from the Bangladesh High Commission in India, marks the first time that such an extensive regional coalition has been formed to address autism spectrum disorders (ASD).

Sonia Gandhi, President of the Indian National Congress, addressed the urgent need to improve policy on autism at the conference.

“In India alone, we probably have over 8 million children with autism spectrum disorder. The formulation of public policy has not kept pace,” Gandhi said. “SAAN will play a major role in bringing about a revolutionary change in the mindset of society.”

Gandhi said that mothers of children with ASD and other development disorders suffer tremendously when thinking about the future of their children.

"Life-long afflicted children need life-long support. For this, we should come forward and help them," she said.

Indian Health Minister Ghulam Nabi Azad said he would work for greater collaboration on ASD between the ministries of different countries in the region and increased coordination between the various ministries in his own country to compile data and training practices for professionals. His statement followed a presentation made by the Bangladesh delegation on a successful model for inter-ministerial collaboration that has lead to dramatic changes in the perception of ASD and its management in Bangladesh.

Saima Wazed Hossian, Chairperson of the National Advisory Committee on Autism in Bangladesh and daughter of Prime Minister Sheikh Hassina said, “Our efforts over the past 2 years in Bangladesh have made us realize that in order to fully address the needs of those with ASD, our approach has to be multi-faceted, comprehensive, and integrated with other community programs.”  Hossain, who was a keynote speaker, continued, “Interagency cooperation is necessary to develop early detection and intervention programs which are incorporated within existing health, educational, and social support systems.”

The Government of Bangladesh was instrumental in the December 12, 2012 United Nations General Assembly unanimous adoption of a new resolution calling on governments to take urgent action to improve access to long-term healthcare, education, training and intervention programs for persons with ASD. Autism Speaks commended SAAN members for being some of the first to take the urgent action that was called for in the resolution, which set the pretext for SAAN and its future activities. 

Michael Rosanoff, MPH, Associate Director of Research at Autism Speaks, presented on the organization’s capacity-building work in South Asia and the developing world.

“Our efforts in South Asia have focused on encouraging public-private partnership in addressing ASD and empowering both parents and professionals,” Rosanoff said. “We have worked on translating diagnostic tools, conducting studies on prevalence, and training care providers. These efforts combined will help improve the lives of those with ASD in Bangladesh, India, and beyond.”

Presentations were also given by Helen Tager-Fluberg, Ph.D., President of the International Society for Autism Research and Director of the Department of Cognitive Neuroscience at Boston University, and Connie Kasari, Ph.D., Professor of Psychological Studies in Education and Psychiatry at the University of California, Los Angeles (UCLA).

During the conference, all 8 members of the SAAN Network officially and unanimously adopted a charter that established their commitment to the following goals.

  1. To raise public and professional awareness of ASD
  2. To provide resources for parents and professionals
  3. To collect public health data to understand the burden of ASD
  4. To conduct professional training in the areas of evidence based services to meet the life cycle needs of persons with ASD
  5. To encourage research in ASD
  6. To promote inter-country sharing of data resources and expertise
  7. To explore funding mechanisms to achieve the above goals and objectives

 

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About the South Asia Autism Network (SAAN)
Building on the momentum of the Conference on Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South Asia and the unanimous adoption of the Dhaka Declaration, in an unprecedented demonstration of regional partnership to combat the devastating autism public health crisis, the South Asia Autism Network (SAAN) was born. 

The intention of SAAN is to identify the common challenges each country is facing and form a partnership to develop solutions that will meet the needs of families and individuals on the spectrum, in a collaborative and coordinated fashion.

SAAN’s intentions include establishing a regional autism awareness campaign in South East Asia, creating joint programs for information-sharing and professional training, and defining national and regional strategies to advance autism public health research and policy development.

About Autism
Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and environmental influences. These disorders are characterized, in varying degrees, by communication difficulties, social and behavioral challenges, as well as repetitive behaviors. An estimated one in 88 children in the U.S. is on the autism spectrum – a 78 percent increase in six years that is only partly explained by improved diagnosis. 

About Autism Speaks
Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Mr. Wright is the former vice chairman of General Electric and chief executive officer of NBC and NBC Universal. Since its inception, Autism Speaks has committed more than $195 million to research and developing innovative resources for families. Each year Walk Now for Autism Speaks events are held in more than 100 cities across North America. On the global front, Autism Speaks has established partnerships and related activities in more than 40 countries on five continents to foster international research, services and awareness. To learn more about Autism Speaks, please visit AutismSpeaks.org.