On World Autism Awareness Day, April 2, Autism Speaks co-hosted a United Nations panel –“Science, Collaboration and Answers for the Global Autism Community” – with the countries of Qatar and Bangladesh. Co-sponsors included the Permanent UN Missions of India, Nigeria and the Republic of Korea.
“It’s an honor to be here on World Autism Awareness Day – a day that every member country of the United Nations has sanctioned,” said Autism Speaks co-founder Suzanne Wright in opening remarks.
Added Madam Ban Soon-taek, spouse of UN Secretary General Ban Ki-moon: “We are proud to have walked closely with Autism Speaks for the past eight years. We are so impressed by the commitment of its founders Suzanne and Bob Wright to support individuals, families and communities affected by autism.”
Global Autism Awareness
In 2007, Qatar partnered with Autism Speaks to spearhead the passage of the UN’s World Autism Awareness Day Resolution. Passed unanimously by all UN member states, the resolution embodies a commitment to improve the quality of life of children and adults affected by autism.
Since then Autism Speaks has partnered with Bangladesh, other UN member states and the World Health Organization to develop, pass and implement additional autism and developmental disabilities resolutions and international commitments.
In this tradition, Autism Speaks has continued to co-host – with Qatar and Bangladesh – annual UN events on World Autism Awareness Day.
Advances in Science, Collaboration and Evidence-based Services
Rebecca Jarvis, chief business and economic correspondent for ABC News, moderated the afternoon scientific session.
Saima Wazed Hossain, chairperson of the National Advisory Committee on Autism of Bangladesh, gave an overview of how she and her colleagues – including parent advocates – worked with 13 government ministries to incorporate autism services into their existing public health, education and employment agendas. “We met with each minister individually, inviting a family member of someone with autism to go with us,” she explained. “The key was not asking them to find new money, but to make good choices that could provide support for those with autism.” The Bangladeshi model – now an exemplar for other resource-poor and middle-income nations – focuses on empowering and educating parents so they can make changes in their communities.
Amal Al Mannai, chief executive officer of the Qatar Foundation for Social Action, described its mission of providing guidance on developing an “inclusive and enabling society” where people with autism and other developmental disabilities can prosper.
Andy Shih, Autism Speaks senior vice president for scientific affairs, provided an overview of Autism Speaks work in more than 60 countries. Dr. Shih’s Global Autism Public Health (GAPH) team provides guidance to governments and parent-advocacy groups on developing national autism policies and culturally appropriate services around the world.
Joining Dr. Shih by video were GAPH team members sending World Autism Awareness Day progress reports from Albania, Morocco, Mexico and Peru. (See video above.)
“Our goal is to work in collaboration with local stakeholders to deliver practical, feasible and sustainable services,” Dr. Shih concluded. “No two countries have the same needs. So you can think of GAPH as precision medicine on a community level.”
Mohammed Badr Al Sada, executive director of Qatar’s Al Shaffalah Center, described the center’s mission to provide comprehensive services for children and teens with developmental disabilities and their families. The center is in the final phase of developing an autism school curriculum that can serve as a model for the region. The center has also developed innovative vocational programs with major employers including Qatar Airways, with the support of Qatar’s Ministry of Trade and Commerce.
Devora Kestel, of the Pan American Health Organization, highlighted the “treatment gap” for children with autism in low-resource world regions. “In underdeveloped and middle-income countries an almost unbelievable 80 percent of children with autism and other developmental disorders do not receive treatment,” she said. “Yet there are reasons for optimism given recent international commitments.” Dr. Kestel credited parents and caregivers of children with developmental disabilities with driving the progress.
She noted that tools for empowering parents were among the priorities identified by the first World Health Organization conference on autism in 2013. “We are taking that task seriously,” Dr. Kestel said, in welcoming the first “Capacity Building Workshop on Parent Skills Training for Developmental Disorders,” co-sponsored by Autism Speaks and WHO in Geneva next week (April 7-10).
Steve Scherer, of Toronto’s Centre for Applied Genomics, introduced Autism Speaks’ historic MSSNG (pronounced “missing”) autism genomics program, which he directs. The program's mission is to finding the missing answers to autism through genomics and open science.
“MSSNG is the largest whole genome sequencing project in the world and the only one I know of that’s making data open access to researchers and families,” he said. “We join in celebrating World Autism Awareness Day today by beginning the transfer of the next 1,000 genomes into its database.”
By sequencing the genomes of 10,000 participants from families affected by autism, MSSNG will go beyond empowering research to connect families affected by similar genetic subtypes of autism.
“While we’ve begun this work in North America, we need participation from all the countries represented at this table,” Dr. Scherer said. “Each child with autism is like a snowflake, and we need to understand all the forms of autism.” Dr. Scherer also noted that international research is particularly important for understanding how genetics interacts with different environmental influences to produce autism.
Helen Tager-Flusberg, past president of the International Society for Autism Research (INSAR), described the organization’s commitment to bringing together autism scientists, professionals and families from around the world. “With representatives from more than 40 countries each year, our goal is to increase participation from scientists and other stakeholders from lower income countries.” To make this happen, INSAR offers discounted rates and is planning its first world-region conferences, beginning in Shanghai later this year.
Mesbah Ansari, a counselor with the UN Mission from Iran, spoke as a father and certified Pivotal Response Training (PRT) therapist who, with his wife, runs a national PRT training program for Iranian parents and therapists. He urged the UN to include autism on its universal health agenda with the twin goals of parent empowerment and the creation of a more “autism friendly world.”
“Too long we’ve concentrated our resources only on therapists,” he said. “Now we know that it’s important to train parents and guardians in the skills and techniques they need to treat their beloved children in the natural environment of their homes.”
Mr. Ansari welcomed the upcoming WHO-Autism Speaks workshop on parent skills training. “My wife and I use our training in all aspects of life with our son,” he added. “We’ve made it a method of life rather than a treatment.”
Usman Sarki, UN ambassador from Nigeria, emphasized advocacy and engagement on a global level. “The world needs to be able to trust the United Nations to provide the highest standards and to hold governments and leaders accountable to their commitments.”
View a video of the full event, including welcoming remarks, panel discussion and presentations below.
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