World Autism Awareness Day at the UN: Tackling Shared Global Challenges

The title of the day’s discussion came directly from a United Nations resolution passed unanimously by the General Assembly on December 12, 2012. Seventy nations co-sponsored the resolution, which calls on all member nations to develop programs to enhance access to autism services and advance opportunities for persons with autism to become active and valued members of their communities.

Ban Soon-taek, spouse of the UN Secretary-General Ban Ki-Moon, delivered a videotaped message (above). The Secretary-General addressed attendees in a message delivered by Shamshed Akhter, the UN assistant secretary-general for economic development.

“Now is the time for a more inclusive society,” he urged. “Let us continue to work hand-in-hand with persons with autism. Let us help them to cultivate their special strengths and meet their challenges, while enabling them to lead the productive lives that are their birthright.” The Secretary-General called on world leaders to seize the opportunity of an upcoming UN meeting on disability and development to make meaningful change in the lives of individuals and families affected by autism around the world.

Other opening speakers included Executive Director of the World Health Organization Jacob Kumaresan, Bangladesh Ambassador and Permanent Representative to the United Nations Abdul Momen, ambassadors from Qatar and Bahrain and a representative from the United States.

Self-Advocate Moderates Panel 

Autism self-advocate Ari Ne’eman moderated the panel discussion. Ne’eman is the president and co-founder of the Autistic Self Advocacy Network. In 2010, President Obama appointed Ne’eman to the National Council on Disability.

Ne’eman called on the National Institutes of Health and private research foundations to commit a greater proportion of autism funding toward services research for adults with autism. He also called for greater inclusion of persons with ASD in the development of such programs.

“From our point of view, what we want are same things listed in the UN Convention on Persons with Disabilities,” he said. “That includes respectful awareness-raising that’s consistent with the desires of persons with disabilities.”

A Parent’s Perspective

Autism Speaks Board member, actress, author and autism advocate Holly Robinson Peete provided a parent’s perspective. “Even with considerable economic means, our family experienced challenges in getting our son RJ the necessary services,” she said. “I can only imagine how that challenge is amplified for families without financial means.”

Peete also spoke of the great need to combat stigma and increase access to care in underserved populations, including ethnic minority communities in North America. “Regardless of ethnicity, race, and socioeconomic status, all parents want the best for their children – to live a happy and healthy life where they are accepted by society and their full potential as an individual can be realized.”

Bangladesh Leads by Example

“Bangladesh can speak from firsthand experience that, even with limited resources, countries can make a difference in their autism communities,” said Saima Wazed Hossain, chairperson of the Bangladesh’s National Advisory Committee on Autism. Bangladesh’s efforts of the last two years have included autism training for community health workers, educators and early childhood caregivers. Bangladesh’s autism community has also engaged other advocacy and healthcare groups.

Autism Speaks Tackles Disparity

Panelist and Autism Speaks Chief Science Officer Geri Dawson, Ph.D., discussed efforts by Autism Speaks Global Autism Public Health Initiative (GAPH) to build capacity for autism services worldwide. GAPH helps nations build locally effective and culturally sensitive community programs under the guidance of parents, community workers and government representatives.

“The goal is equity instead of disparity in access to services for individuals across the lifespan and around the globe,” Dr. Dawson said. Both high- and low-income countries face many of the same challenges in raising awareness and delivering screening and services, she noted. “Only by working together, sharing experiences and expertise and making the best use of limited resources, can we make a difference,” she urged.

Cost-Benefits of Effective Intervention and Support

David Mandell, Sc.D., of the University of Pennsylvania, described his Autism Speaks-funded research on autism costs for individuals, families and societies. “The direct and indirect costs of autism rival or surpass those of many chronic diseases for which we have made prevention and treatment a major public health cause,” Dr. Mandell said. These costs include a dramatic loss in work productivity among parents of children with autism and the undeveloped potential of adults with autism.

Currently, the United States is making substantial financial investment in education services for young children with ASD. “But this hasn’t been paralleled by support for adults,” Dr. Mandell reported. In particular, programs are needed to help young adults with autism make the transition into higher-education, gainful employment and greater self-sufficiency.

While investments in early intervention are relatively high in the United States, Dr. Mandell cited studies showing that the early intervention services delivered in the community tend to fall short of what’s needed to significantly improve abilities and quality of life. “We urgently need cost-effectiveness studies to establish the economic value of high quality early intervention,” he concluded. With support from Autism Speaks, Dr. Mandell is pursuing such research. He is also studying the economic return on programs that help adolescents make the transition to a more independent and productive adulthood.

Autism Speaks Senior Vice President of Scientific Affairs Andy Shih, Ph.D., closed the day’s discussions with a special thanks to the UN representatives attending. “The resolution on autism that you unanimously adopted just four months ago in the UN General Assembly, reconfirms our global commitment,” he said. “We are grateful and proud that the resolution will play an integral part in the broader global disability movement.”