Takeaways from the October 2023 IACC Meeting

October 12, 2023

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. Among their responsibilities, the committee holds quarterly meetings which are open to the public and discuss committee business, agency updates, and issues related to autism research and services.

The October 11, 2023, IACC meeting recognized National Disability Employment Awareness Month and discussed upcoming IACC publications, federal agency updates as well as the topic of mental health for individuals on the autism spectrum.

Perspective from Tom Frazier, PhD, IACC Committee Member & Autism Speaks National Board Member

“As a longtime observer but first-time participant, it is clear to me that the committee is increasingly recognizing the importance of shaping research and services for autistic people with the greatest needs, including those with intellectual disability and other co-occurring medical and mental health conditions.”

Recognizing National Disability Employment Awareness Month

Observed each October, National Disability Employment Awareness Month (NDEAM) celebrates the contributions of America’s workers with disabilities and showcases supportive, inclusive employment policies and practices that benefit employers and employees. The Office of Disability Employment Policy shared this year’s NDEAM theme of “advancing access and equity” chosen in honor of the 50th anniversary of the Rehabilitation Act of 1973, the first federal law to address civil rights and equal employment opportunity for people with disabilities.

Sunflower Bakery was also highlighted for its work to enable pathways to employment for young adults and teens with learning differences, including those diagnosed with autism. John Katz, Director of Programs at Sunflower Bakery, shared that over the past eleven years they have grown to be one of the largest workforce development programs in Maryland with a 70% employment rate after participation in their program.

Public Comments, including oral remarks by autism mom and advocate Cheryl Chafos

The public is invited to submit written or oral comments to the committee on autism topics they believe deserve attention.

A highlight of this meeting was the in-person oral testimony of Cheryl Chafos who shared the tragic story of how her 19-year-old son Zachary died after placement in a neuropsychiatric bed at a Maryland facility. She raised additional awareness to the challenges that military families with autistic loved ones face and called for additional supports for autistic individuals with co-occurring conditions that are most vulnerable in the wake of a national mental health crisis.

Read Cheryl’s story told in the Washington Post or Watch Cheryl’s interview with NBC.

Mental Health & Autism

The majority of the afternoon focused on the progress and remaining needs to expand autism mental health research and services, focusing on the following three areas.

• Autism Mental Health Research: It included presentations on emotion dysregulation, behavior, and mental health across the autism spectrum; self-injurious behavior and aggression research; support for autistic individuals with traumatic stress across the lifespan; and lived experience perspectives from autistic people, parents, and clinicians on mental health interventions and areas of need.
• Community Perspectives: The committee also welcomed six guests for a Q&A style panel, to provide a community perspective on mental health needs in autism. Autistic self-advocates shared personal anecdotes from their own experiences with mental health issues while other panelists provided insights as family members or practitioners in the mental health field. The discussion included a focus on suicidal ideation and autism; the intersection of autism and LGBT+, racial and ethnic diversity; as well as how to improve mental health accommodations.
• 
  Mental Health Service System: Three presentations provided examples of how to address the co-occurring mental health needs of autistic people by applying clinical, policy and system considerations to improving the delivery of mental health services. A presentation on The Link Center highlighted it’s mission to serve as a national resource center to improve the quality of life for people with I/DD and mental health conditions by supporting state agencies with policy development, service design, and service coordination resources, and sharing resources with individuals, families, direct support professionals, clinicians, and other policymakers.

Other Committee Business & Updates

The 2021-2023 IACC Strategic Plan is available online. It contains 24 recommendations for activities to improve health, well-being, and outcomes for autistic people with diverse needs in all communities. It includes seven community-focused topics and includes recommendations that address research, services and policy activities. It also includes a new section on equity and disparities, an expanded section on sex and gender and a new section on the impact of COVID-19 on the autism community. The plan will be submitted to Congress and the President.

An update from National Autism Coordinator Susan Daniels, Ph.D., provided information regarding recent White House activities that affect the autism community as well as recent activities and events by other federal committees, departments and agencies. Of particular interest was the recent designation by the National Institutes of Health of people with disabilities as a population with health disparities. This designation will enable more research to go toward addressing disparity and equity issues faced by people with disabilities, including autism, and ensure their representation in NIH research.

Check out round robin updates from:

• Federal agencies including the Administration for Community Living (ACL), Centers for Disease Control and Prevention (CDC), Centers for Medicare and Medicaid Services (CMS), Department of Education, Environmental Protection Agency, National Institutes of Health (NIH), Social Security Administration, Substance Abuse and Mental Health Services Administration
• Public committee members including the Autism Science Foundation; Julie Lounds Taylor, Ph.D., Simons Foundation Autism Research Initiative and Yetta Myrick, B.A.
• Community members including the Association of University Centers on Disabilities (AUCD), Autism Society, Autism Speaks, Autistic Self Advocacy Network, BRAIN Foundation, First Place – Phoenix, Ohio Center for Autism and Low Incidence and the Arce of the United States.

Announcement of funding opportunities, request for information or comments, and upcoming federal meetings or events.

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 January 24, 2024.