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UN panel develops strategies for supporting people with autism

Autism Speaks and UN Permanent Missions of Bangladesh and Qatar convene expert panel on World Autism Awareness Day 2016
April 01, 2016

On the occasion of World Autism Awareness Day, Autism Speaks and the United Nations Permanent Missions of Bangladesh and Qatar co-hosted a UN panel to develop strategies for supporting and empowering people with autism around the world.

The expert panel – Addressing Autism: Strategies for the Global Community Sustainable Development Goals – built on the goals of last year’s UN Sustainable Development Summit. At the summit, world leaders adopted the 2030 Agenda for Sustainable Development, which set 17 goals to end poverty, fight inequality and injustice, improve health and well-being, and tackle climate change in sustainable ways by 2030.

“Children and adults with developmental disabilities have a special place at the heart of the UN Sustainable Development Agenda, because they are among the most vulnerable members of society,” explained Andy Shih, Autism Speaks senior vice president for global public health research. “This is our unprecedented opportunity to inform world leaders about innovative interventions that can empower and enhance the well-being of those with developmental disabilities – and in doing so directly address global disparities in health, education and inclusion.”

Delivering a plan for action
The panel’s discussion will become the basis for a document on recommended measures to address the needs of individuals and families affected by autism and other developmental disabilities and mental health issues. The memorandum will be shared with UN member states to inform their plans for implementing the 2030 Agenda for Sustainable Development.

Autism Speaks Co-founder Suzanne Wright introduced the expert panel, saying: “Our goal is to transform the world into a place that protects the rights and dignity of all individuals with autism… Autism does not discriminate based on race, religion or political persuasion. Yet stigma remains a critical concern in many parts of the world.” (See videoclip below.)

Developmental psychologist Kimber Bogard, director of the Forum on Investing in Young Children Globally, moderated the panel. “I think that this meeting is very important because it addresses the issue of inclusion as countries move toward implementation of sustainable development goals,” Dr. Bogard said. "It’s vital to include individuals with developmental delays and disabilities as part of a larger global development plan.” Dr. Bogard also emphasized the need for a "coordinated approach to move research, policy and practice forward." 

Panelists included:

* Saima Wazed Hossain, chair of the National Advisory Committee on Autism of Bangladesh.

* David Nabarro, UN assistant secretary-general and special adviser on the UN 2030 Agenda for Sustainable Development;

* Paulyn Jean Rosell-Ubial, assistant secretary of the Department of Health in the Philippines;

* Werner Obermeyer, deputy executive director for the World Health Organization (WHO) office in New York;

* Maureen Durkin, a population health expert with the University of Wisconsin School of Medicine and Public Health; and

* Stephen Shore, autism self-advocate and Autism Speaks national board member.

Panelists shared ideas and lessons learned from national and international efforts to address the needs of children and adults with developmental disabilities, including programs aimed at reducing stigma and increasing community inclusion.

The innovative programs discussed by the panel included the WHO Parents Skills Training Program, developed in collaboration with Autism Speaks and pilot tested in China last year. The program trains regional and community master trainers on strategies that parents can use to foster the development of children with developmental delays and disorders including autism.

Autism and sustainable development
Panelists drew connections between autism and the goals of the 2030 Sustainable Development Agenda.

“With 70 million people affected by autism around the world, we will not be able to achieve the Sustainable Development Goals without including autism in each of them,” Dr. Durkin said. Developing practical diagnostic tools and increasing service capacity in practical ways need to be high up on the agenda in achieving the sustainable development goals for the autism community, she added.

“It’s important to look at establishing environments that are enabling,” Mr. Werner Obermeyer said. “We need to bring in persons with disabilities into the decision making.”

“Good sustainable development is about ensuring that all people can participate [in society], regardless of their ability,” Dr. Nabarro agreed. “[Autism] is not just a health issue,” he added. “The health sector has to be there, of course, but you also have to get wider societal involvement…. To ensure that no one gets left behind, politicians needs citizens to help make sure this happens.”

Challenges ahead
The panelists also discussed some of the national and global challenges to the development and implementation of autism and developmental disability programs and policies.

“A lot of work needs to be done on surveillance [to determine autism prevalence],” Mr. Obermeyer emphasized. “We do not have much data outside of Europe and the Americas.”

“Stigma is a tremendous barrier to achieving the Sustainable Development Goals, particularly when it comes to disabilities and autism,” Ms. Hossain said. So too is convincing policy makers to prioritize a disability that affects just one to two percent of the population in countries with more widespread public health challenges such as access to sufficient food and safe water, she added.

“While there are many challenges, there are many opportunities with regard to the Sustainable Development Goals,” Dr. Bogard said. “Global change begins here,” she added referring to the recommendations that will come out of the day’s panel discussion.

Early progress
In addition, several panelists shared insights from their work with individuals and families affected by autism and other developmental disabilities and mental health conditions.

“We are moving from awareness, to acceptance, to appreciation of the differences in people with autism,” Dr. Shore said. “Rather than looking at autism as a disordered way of being, we’re beginning to look at autism as a different way of being.”

Dr. Rosell-Ubial noted that the Philippines has already passed laws to ensure the rights of persons with disabilities. In collaboration with Autism Speaks and Autism Hearts Philippines, the country is also implementing the WHO Parent Skills Training program, starting in areas stricken by Typhoon Haiyan.

And Mr. Obermeyer noted that the Parent Skills Training Program is part of WHO’s larger Mental Health Global Action Program.

In the coming months, the panel organizers will be circulating a draft document that encapsulates the day’s discussions and proposes actions that can become part of the Sustainable Development Agenda.