The Interagency Autism Coordinating Committee (IACC) is a federal advisory committee authorized by the Autism CARES Act. It coordinates federal efforts and provides recommendations to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD). Among its responsibilities, the committee holds quarterly meetings which are open to the public to discuss committee business, agency updates and issues related to autism research and services.

The most recent IACC meeting was held on April 17, 2024. The meeting was an opportunity to recognize Autism Acceptance Month, share upcoming IACC publications and federal agency updates, and discuss international autism activities.

“IACC meetings are pivotal moments for collaboration and progress in understanding and addressing the needs of people with autism around the world,” says Dr. Andy Shih, Ph.D. chief science officer at Autism Speaks. “These meetings provide a platform for us to come together, share insights and discuss strategies for advancing research, policy and services and supports for autistic people and their families. A striking theme from this meeting’s conversations was the importance of engaging the community in all our efforts, from research to policy.”

Recognizing World Autism Month

The committee opened by recognizing April as a time to celebrate the strengths of autistic individuals, call attention to challenges faced by the autism community and reinforce a commitment to creating a more inclusive world. This year, the White House as well as the Department of Health and Human Services changed their designation of April to National “Autism Acceptance Month”, marking the first year to focus on acceptance in the U.S. Over the course of the afternoon, we heard from international advocates how their efforts are rooted in increasing awareness and understanding. The discussion emphasized how awareness and acceptance exist along a spectrum and are both key to addressing challenges faced across the world.

Global Autism Activities at the World Health Organization (WHO)

A presentation on the WHO’s public health approach to autism called attention to health inequities and highlighted the need to investigate and address the social determinants of health outcomes and to invest in innovations in service delivery.

Chiara Servili, technical focal point in WHO's Department of Mental Health and Substance Use, specifically addressed the following WHO initiatives:

• The WHO-UNICEF Global Report on Children with Developmental Disabilities, developed with support from Autism Speaks, provides an action plan, filling an important gap by outlining international commitments to inclusion and health equity; policy, advocacy, education and community action approaches; and the needed competencies to transform environments and health systems for persons with neurodevelopmental conditions, including autism.
• The WHO Caregiver Skills Training (CST) program, developed in collaboration with Autism Speaks, takes a family-centered approach to addressing communication, engagement, daily living skills, challenging behavior and caregiver coping strategies.
• The UNICEF and WHO Joint Programme on Mental Health and Psychosocial Well-being and Development of Children and Adolescents aims to strengthen the capacity of countries to implement evidence-informed and human-rights based multisectoral strategies to deliver opportunities, support and services for children, adolescents and their caregivers.

Global Autism Leadership Through Advocacy & Government

Andy Shih joined representatives from Australia, Canada and Egypt for a session focused on the development of national policy frameworks to support people with autism. Dr. Shih started the conversation with an overview of Autism Speaks’ global autism public health (GAPH) initiatives, including our role in the implementation of the CST program in over 35 countries and our support of autism advocates and local leadership on the global stage through the Advocacy Leadership Network (ALN).

Dr. Shih’s presentation emphasized the importance of solutions that are tailored to the needs, values, priorities and objectives of each individual country—and the importance of learning from local communities in the development of meaningful policy. This was followed by presentations from public policy professionals from Australia, Canada and Egypt who provided insights into the goals and strategies of their countries’ autism policies.

International Autism Research & Advocacy

Five country representatives from the United Kingdom, India, Peru, Kenya and Australia discussed the perception of autism in their countries, current challenges and how their work is addressing those needs. Autism Speaks is grateful to have helped convene this panel of representatives and look forward to continued partnerships as part of our global autism public health initiative.

Throughout the session, the issue of stigma was addressed by all as a significant barrier in diagnosis and treatment within countries like India, Peru and Kenya, and a barrier for greater inclusion and acceptance of autistic individuals within the U.K. and Australia. Challenges with and efforts to develop culturally relevant and appropriate resources and leverage open-source tools and information were also discussed. The panel ended by sharing their aspirations for future work in their respective countries. Despite widespread differences in environments, cultures, capacity and resources, a universal theme was the need for equitable access to resources reflective of communities’ priorities. Other themes included giving greater voice to autistic individuals, greater awareness and resources of intersectionality of autistic lives (LGBT and autism; parents and autism; workers with autism), and increased economic inclusion, including employment opportunities.  

Committee Business & Updates

The 2019-2020 Autism Research Portfolio Analysis Report is available and presents trends in autism research funding and their alignment to the committee’s strategic plan; an analysis of autism in girls and women; and projects addressing racial, ethnic, geographic and socioeconomic disparities.

An update from National Autism Coordinator Susan Daniels, Ph.D., provided information regarding recent White House and Autism Acceptance Month updates as well as recent autism activities and events by other federal committees, departments and agencies. Of particular interest was President Biden using his State of the Union address to urge Congress to add funding for Medicaid home and community-based services (HCBS) as well as an executive order to create more registered apprenticeship programs in the federal workforce.

Additional updates from federal agencies, public committee members and community members were shared with an extensive Round Robin Update available online.

Public Comments

The public is invited to submit written or oral comments to the committee on autism topics they believe deserve attention. While submitted comments range in focus, the meeting’s conversation was more specifically focused on the topic of co-occurring conditions.

For more information on this meeting, including referenced research, programs, speakers and a recording of the event, visit the IACC website.

The next IACC meeting will be a hybrid event and will take place on July 10, 2024.