The Importance of Lived Experience Perspectives – Insights From the IACC

During National Autism Acceptance Month, NIMH and the NIMH Office of National Autism Coordination  celebrate the important contributions of autistic people in our families and our society, and we reaffirm our support for their acceptance, inclusion, and full participation in all aspects of community life. This April, we would like to highlight NIMH’s unique role in federal autism coordination efforts and reflect on how the lived experiences of autistic people and their families have shaped federal autism research, services, and policy.

We have the privilege of serving as the Chair and Executive Secretary of the Interagency Autism Coordinating Committee (IACC) . The IACC is a federal advisory committee established by Congress and currently authorized under the Autism CARES Act of 2019. The committee includes federal officials from agencies that support autism research and vital services for people with disabilities, as well as public members, including autistic adults, family members, advocates, researchers, and service providers from diverse communities around the country.

The IACC serves as a forum for community engagement and provides an important point of convergence and collaboration. Federal agency members and public members work together to develop and provide advice that informs the Secretary of the Department of Health and Human Services, federal agencies, Congress, and the President. This advice guides the activities of federal agencies and helps ensure that federal programs are responsive to the needs of the autism community.

Reflecting community needs

In working with the IACC, we have seen how community voices, reflecting the lived experiences of autistic people and their families, can contribute to important advances in federal autism activities. Public input on the co-occurring mental and physical health conditions often experienced by autistic individuals is one such example. These conditions can include seizure disorders, gastrointestinal problems, and disruptions in sleep. They can also include mental disorders and mental health conditions such as anxiety, depression, attention-deficit/hyperactivity disorder (ADHD), self-injury, and suicidal ideation. Many autistic individuals also have learning disabilities or additional developmental conditions and disabilities.

For many people with autism, co-occurring conditions can contribute to lost opportunities and decreased productivity, poor health outcomes, and, in some cases, premature death. Discussions initiated by public members of the IACC, along with public comments received at IACC meetings and at an IACC-sponsored town hall , helped to shape the research objectives on co-occurring conditions in the inaugural 2009 IACC Strategic Plan .

The topic of co-occurring conditions remains an IACC priority today. The 2021-2023 IACC Strategic Plan  includes comprehensive recommendations for research investigating the biology underlying co-occurring conditions and autism, as well as interventions and services to address these conditions across the lifespan. Just last year, the IACC issued a Request for Information  seeking additional community input on the topic and received responses from more than 1,200 people. Themes and priorities from these responses will be included in the forthcoming IACC Strategic Plan Update, which will focus on the impact of co-occurring conditions on the physical and mental health of people on the autism spectrum. The update aims to further identify opportunities for research and services to improve well-being for autistic people.

Representing diverse experiences

Hearing from people with lived experience has shed light on additional issues important to the autism community, including wandering and elopement, the needs of transition-age youth and adults, and autism in girls and women. Autistic people and family members have also emphasized the breadth of experiences and challenges across the spectrum of ability and disability and the need for a range of personalized tools, interventions, services, and supports rather than a one-size-fits-all approach.

Based on input from autistic people and families from diverse and underserved communities, the IACC has prioritized the need to increase equity and reduce disparities experienced by autistic individuals across race, ethnicity, culture, sex and gender, socioeconomic status, and geographic location, including rural and urban communities. This also includes the need for more researchers and service providers who come from diverse communities and have lived experience with autism and disability.

The 2021-2023 IACC Strategic Plan includes two cross-cutting recommendations – one on equity and disparities and one on sex and gender – to intensify focus on addressing gaps in these areas and increase equity for all autistic people. The committee also continues to support priorities to ensure that autism research and services meet the needs of individuals across the whole spectrum, including those with the highest support needs, and across the full lifespan into older adulthood. Importantly, the strategic plan emphasizes inclusion and acceptance of all autistic people and reducing barriers to their participation in every aspect of community life.

Prioritizing collaboration and inclusion

In all of this work, consideration of diverse viewpoints and experiences from across the autism community and a spirit of cooperation, collaboration, and civility have been crucial. As the autism landscape continues to evolve, collaboration between federal agencies and community members will remain a cornerstone of progress in improving the health and well-being of autistic people and their families.

Community engagement plays an important role across the broad portfolio of federal research, services, and policy activities related to disabilities, mental health, and physical health. Federal agencies gather public input through federal advisory committees; solicit public comments through formal requests for information; and engage individuals with lived experience in grant review panels, community engagement programs, and community-based participatory research. Lived experience perspectives strengthen federal programs and help ensure federal research and services address the issues most important to those whom they serve.

During Autism Acceptance Month, let us honor the contributions of autistic individuals and others with lived experience; strive to ensure that their voices, perspectives, and priorities are heard and represented in federal activities for research, services, and policy; and work toward a more inclusive society for all.