In January, the Interagency Autism Coordinating Committee (IACC) approved a new strategic plan, as reported in Disability Scoop. The new plan provides recommendations to the Secretary of Health and Human Services regarding autism research, services, and supports, among others.
In addition, it calls for a “substantial increase” in government funding for autism research to reach $684 million by 2025, from $409.2 million in 2020. This plan also marks a shift in the language used by the Committee about autism. In a December 2022 Disability Scoop article, Susan Daniels, executive secretary of IACC, described the change as “moving away from deficits-based language and towards more neutral, strengths-based, inclusive language while also balancing the importance of maintaining accuracy when referring to issues that may be scientific, medical or clinical in nature.”
This strategic plan is the first update since 2019. According to a 2021 article on Disability Scoop, the Committee did not meet between 2019 and 2021. In that time, current committee members’ terms expired, and new members were not appointed until shortly before the 2021 meeting. Under the Autism CARES Act, the IACC is supposed to update its strategic plan each year. Federal agencies and private organization rely on the plan’s recommendations and information. Daniels told Disability Scoop that the COVID-19 pandemic and the transition to a new president in 2021 delayed the appointment of new members and the process of updating the strategic plan.
Strategic Plan Recommendations
The recommendations in the 2021-2023 Strategic Plan for Autism Research, Services, and Policy are grouped under seven topic areas.
Screening and Diagnosis
- Recommendation 1: Support research on how early detection of autism influences outcomes.
- Recommendation 2: Reduce disparities in early detection and access to services.
- Recommendation 3: Develop and adapt screening and diagnostic tools, including tools that incorporate new technologies to increase efficiency, accuracy, and timeliness of identification.
- Recommendation 1: Foster research to better understand the processes of early development, molecular and neurodevelopmental mechanisms, and brain circuitry that contribute to the structural and functional basis of autism.
- Recommendation 2: Support research to understand the underlying biology of co-occurring conditions in autism and to understand the relationship of these conditions to autism.
- Recommendation 3: Support large-scale longitudinal studies to answer questions about the development and natural history of autism across the lifespan, from pregnancy through childhood, adolescence, adulthood, and older adulthood.
Genetic and Environmental Factors
- Recommendation 1: Strengthen understanding of genetic factors that influence autism and its co-occurring conditions across the full diversity of individuals on the autism spectrum.
- Recommendation 2: Understand the influence of environmental factors on the development and progression of autism and its co-occurring conditions, enabling the development of strategies to maximize positive outcomes.
- Recommendation 3: Expand knowledge about how multiple environmental and genetic factors interact through specific biological mechanisms to manifest in autism phenotypes.
- Recommendation 1: Develop and improve pharmacological and other medical interventions that will maximize positive outcomes for individuals on the autism spectrum.
- Recommendation 2: Create and improve a variety of psychosocial, developmental, occupational, and educational interventions that will maximize positive outcomes for individuals on the autism spectrum.
- Recommendation 3: Develop and improve technology-based interventions that will maximize positive outcomes for individuals on the autism spectrum.
Services and Supports
- Recommendation 1. Develop service approaches and scale up and implement evidence-based interventions in community settings.
- Recommendation 2. Address disparities in service provision and improve access to services for all, including low resource and underserved communities and individuals and families with high support needs.
- Recommendation 3. Improve service delivery to ensure quality and consistency of services across many domains with the goal of maximizing the probability of positive outcomes and improving the value that individuals get from services.
- Recommendation 1: Support development and coordination of integrated services to help people on the autism spectrum successfully transition to adulthood and progress through the lifespan with appropriate services and supports.
- Recommendation 2: Support research and develop and implement approaches to improve physical and mental health outcomes across the lifespan, with the goal of improving safety, reducing premature mortality, and enhancing health and well-being.
- Recommendation 3: Support research, services activities, and outreach efforts that facilitate and incorporate accessibility, as well as acceptance, accommodation, inclusion, independence, and integration of people on the autism spectrum.
Infrastructure and Prevalence
- Recommendation 1: Promote growth, linkage, coordination, and security of biorepository and data repository infrastructure systems, equitable access to these systems, and inclusion of diverse samples.
- Recommendation 2: Expand and enhance the research workforce, with attention to diversity and inclusion, and accelerate the pipeline from research to practice.
- Recommendation 3: Strengthen statistical data gathering systems to advance understanding of the autistic population, while allowing comparisons and linkages across systems as much as possible.
IACC staff will make edits requested by the panel members, and a final version is expected to be released in April or May.
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.