Autism Awareness Month: The Power of Community
By Joshua Gordon on April 10, 2023
April is Autism Awareness Month. At the National Institute of Mental Health (NIMH), it’s a time to reflect on our progress and reaffirm our commitment to supporting research that responds to the needs of people on the autism spectrum, now and into the future.
But we’re not doing this work alone. This year, I want to focus on the power of community. A clear example of a community in action is the Interagency Autism Coordinating Committee (IACC). The IACC advises the Secretary of the U.S. Department of Health and Human Services on autism policies, practices, and research priorities. The current IACC member roster comprises the largest and most diverse group to date, including federal officials, academic researchers, autistic self-advocates, family members of people with autism, and others.
As NIMH Director, I have the honor and privilege of serving as IACC chair. From a personal perspective, I have learned so much from my fellow members, particularly about the needs and aspirations of the many people on the spectrum, parents, and community members who have contributed to our discussions over the years. And from an institute perspective, NIMH has valued this input tremendously as we plan research initiatives that are responsive to these needs and aspirations.
Planning as a community
But the IACC’s work extends beyond the research domain, and its influence guides policy throughout the federal government. To guide federal autism efforts, the IACC is tasked with creating a strategic plan. Accordingly, the IACC recently completed the 2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy, which I’ll refer to here as the Plan. The Plan will be published on the IACC website in May 2023, and it represents a true community effort, with input from autistic people, family members, researchers, clinicians, service providers, educators, advocacy organizations, and others. The Plan also reflects a diversity of opinions and experiences, synthesized and presented with a collective voice.
This is the most comprehensive IACC strategic plan to date, spanning an array of topics that aim to address needs across the autism spectrum and the lifespan. It covers many important issues, and I really encourage you to set aside some time to check it out. Here, I’ll draw attention to just a few of the new and notable themes:
- The need for a range of solutions for people across the spectrum, including those with the highest support needs
- The Plan discusses intellectual disability, communication differences, challenging behaviors, sensory and motor differences, and co-occurring physical and mental health conditions that can result in the need for targeted or higher levels of support.
- The need for a range of solutions that cover the full lifespan
- The Plan discusses the needs of people on the autism spectrum across the entire lifespan. This is the first time the Plan has specifically addressed issues in older adulthood, including health, healthcare, and other supportive services.
- The need to increase equity and reduce disparities
- The Plan highlights intersectional issues of race, ethnicity, sexual orientation, gender and gender identity, age, language, socioeconomic status, and location.
- The role of social determinants of health and the services system
- The Plan outlines factors that significantly impact well-being for autistic people across the lifespan, including access to high-quality education, housing and transportation, employment, community integration, financial security, and safety.
The IACC strategic plan will help guide the activities of NIMH, federal agencies, and private organizations. It will also help the public, including people with autism and their family members, understand progress in autism research and activities aimed at improving autism services. In short, the IACC strategic plan will help us all work together toward the common goal of meeting the needs of the autism community.
Building collaboration and community into research
One key ongoing message is clear: The research community will need to expand to address the full range of needs of the autism community. The National Institutes of Health (NIH) has heard this message and has responded in various ways.
For example, in 2019, NIMH established career enhancement awards to advance autism services research (RFA-MH-19-100; RFA-MH-19-101). These grants were designed to provide support for an intensive period of mentored research experience, enabling experienced researchers to work with a mentor and gain new research capabilities in services for adults or transition-age youth on the autism spectrum. We expect this initiative will lead to new research collaborations and innovative approaches to addressing gaps in autism services.
In 2022, NIH awarded $100 million to support a new set of Autism Centers of Excellence (ACE) covering various research topics, such as sleep disturbances in autism, health equity in underserved communities, autism in females and gender diverse people, healthy aging, and mental health in autism. Community engagement is a core feature of the ACE program—each ACE will have an external advisory board that includes people with autism and parents of people with autism as members. In addition, ACE investigators will engage with the autism community to learn about their needs and research concerns, inform them about research findings, and plan for future studies.
Moving forward together
These are just a few examples of how the autism community is coming together to push the field forward. This Autism Awareness Month, I want to reinforce our commitment to supporting innovative, collaborative efforts to address the needs of the millions of Americans with autism. We still have a long way to go, but I know we will continue to make meaningful progress in partnership with the autism community.