IACC Strategic Plan
For Autism Spectrum Disorder
The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that advises the Secretary of Health and Human Services on issues related to ASD. The committee was established by the Combating Autism Act (CAA; Public Law 109-416) and was most recently reauthorized in 2019 under the Autism Collaboration, Accountability, Research, Education, and Support Act (Autism CARES Act; Public Law 116-60). One responsibility of the IACC is the development of a Strategic Plan for ASD, to be updated annually. The IACC Strategic Plan, first issued in 2009, serves as a guide for federal agencies and private organizations in planning ASD-related research, services and support activities. It is produced by the IACC, including federal officials and public stakeholder members, and is informed by extensive input from researchers, adults on the autism spectrum, parents, advocates, and the general public. This inclusive process ensures that the IACC Strategic Plan reflects diverse perspectives from across the autism community.
The IACC Strategic Plan, most recently revised in 2016-2017, is organized around seven general topic areas that are represented in the Plan as consumer-focused Questions (e.g., Question 1, "How can I recognize the signs of ASD, and why is early detection so important?"). Each Question is assigned a chapter that provides the aspirational goal, or long-term vision; a description of the state of the field; the needs and opportunities in research, services, and policy; and three to four broad objectives for each Question’s research topic (Figure 1). For the 2016-2017 edition of the Strategic Plan, the Committee revised the seven questions to be more aligned with current and future research priorities. In addition, the committee developed 23 new strategic objectives that address autism research, services, and policy, including one cross-cutting objective on the topic of ASD in females that spans the seven questions in the IACC Strategic Plan. Lastly, to monitor and call for significant growth in ASD research, the Committee included a budget recommendation for a doubling of the 2015 ASD research budget over the next five years. This would require a total ASD research budget of $685 million by 2020.
This 2018-2019 IACC Strategic Plan Update is the work of the IACC membership that was appointed under the Autism CARES Act of 2014. The Committee agreed that the 2016-2017 IACC Strategic Plan reflected a comprehensive review of the state of the field and provided a set of 23 new research, services, and policy-related objectives. Therefore, for this 2018-2019 Update, it would be most beneficial to the community to provide an update on progress that has been made by the Committee, federal agencies, and the broader autism community toward the issues and goals described in the 2016-2017 IACC Strategic Plan. The 2018-2019 IACC Strategic Plan Update includes:
Chapter 1: A synopsis of presentations and discussions that took place at IACC Full Committee meetings in 2018 and 2019.
Chapter 2: A recap of the activities of the IACC Working Group focused on improving health outcomes for people on the autism spectrum.
Chapter 3: A recap of the activities of the IACC Working Group focused on housing issues experienced by people on the autism spectrum and their families.
Chapter 4: A summary of the 2016 ASD Research Portfolio Analysis Report, which is the first analysis of research activities among federal and private funders as they correspond to the objectives of the 2016-2017 IACC Strategic Plan.
Chapter 5: A synopsis of the Department of Health and Human Services Report to Congress on Activities Related to Autism Spectrum Disorders and Other Developmental Disabilities Under the Autism Collaboration, Accountability, Research, Education and Support Act (Autism CARES Act) of 2014 (FY 2014 – FY 2018), highlighting recent federal activities related to ASD research and services.
Together, the Committee hopes that the 2018-2019 IACC Strategic Plan Update will provide an insightful overview of the recent efforts in ASD research, services, and outreach as they relate to the issues and goals described in the 2016-2017 IACC Strategic Plan.
2016-2017 IACC Strategic Plan Objectives
- Strengthen the evidence base for the benefits of early detection of ASD.
- Reduce disparities in early detection and access to services.
- Improve/validate existing, or develop new tools, methods, and service delivery models for detecting ASD in order to facilitate timely linkage of individuals with ASD to early, targeted interventions and supports.
- Support research to understand the underlying biology of sex differences in ASD, possible factors that may be contributing to underdiagnosis, unique challenges that may be faced by girls/women on the autism spectrum, and develop strategies for meeting the needs of this population.
- 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 ASD.
- Support research to understand the underlying biology of co-occurring conditions in ASD and to understand the relationship of these conditions to ASD.
- Support large-scale longitudinal studies that can answer questions about the development of ASD from pregnancy through adulthood and the natural history of ASD across the lifespan.
- Strengthen understanding of genetic risk and resilience factors for ASD across the full diversity and heterogeneity of those with ASD, enabling development of strategies for reducing disability and co-occurring conditions in ASD.
- Understand the effects on ASD risk and resilience of individual and multiple exposures in early development, enabling development of strategies for reducing disability and co-occurring conditions in ASD.
- Expand knowledge about how multiple environmental and genetic risk and resilience factors interact through specific biological mechanisms to manifest in ASD phenotypes.
- Develop and improve pharmacological and medical interventions to address both core symptoms and co-occurring conditions in ASD.
- Create and improve psychosocial, developmental, and naturalistic interventions for the core symptoms and co-occurring conditions in ASD.
- Maximize the potential for technologies and development of technology-based interventions to improve the lives of people on the autism spectrum.
- Scale up and implement evidence-based interventions in community settings.
- Reduce disparities in access and in outcomes for underserved populations.
- Improve service models to ensure consistency of care across many domains with the goal of maximizing outcomes and improving the value that individuals get from services.
- Support development and coordination of integrated services to help youth make a successful transition to adulthood and provide supports throughout the lifespan.
- Support research and implement approaches to reduce disabling co-occurring physical and mental health conditions in adults with ASD, with the goal of improving safety, reducing premature mortality, and enhancing quality of life.
- Support research, services activities, and outreach efforts that facilitate and incorporate acceptance, accommodation, inclusion, independence, and integration of people on the autism spectrum into society.
- Promote growth, integration, and coordination of biorepository infrastructure.
- Develop, enhance, and link data repositories.
- Expand and enhance the research and services workforce, and accelerate the pipeline from research to practice.
- Strengthen ASD surveillance systems to further understanding of the population of individuals with ASD, while allowing comparisons and linkages across systems as much as possible.
Figure 1. The 2016-2017 IACC Strategic Plan’s revised seven questions and 23 new objectives.