Introduction and Analysis Framework

The Office of National Autism Coordination (ONAC) at the National Institute of Mental Health (NIMH), National Institutes of Health (NIH) supports the activities of the IACC. The first IACC Autism Research Portfolio Analysis Report was issued in 2008 to provide the Committee with comprehensive information about the status of autism research funding among federal agencies and private research organizations in the United States.

The 2008 Portfolio Analysis Report, along with extensive input from federal and public stakeholders, informed the development of the first IACC Strategic Plan for Autism Spectrum Disorder Research that was published in 2009. The Strategic Plan provides a framework to guide the efforts of federal and private funders of autism research. The IACC Portfolio Analysis Reports align autism research projects with Objectives described in the IACC Strategic Plan. The reports present funding for research projects related to Strategic Plan Objectives and track funding over time. The IACC has used this information in their efforts to monitor autism research and determine progress made each year toward accomplishing the Objectives in the IACC Strategic Plan.

The 2016-2017 IACC Strategic Plan for Autism Spectrum Disorder, which was the most recent edition of the Strategic Plan when this report was prepared, organizes research priorities around seven general topic areas represented as community-focused "Questions." Each Strategic Plan Question includes three to four primary Objectives, and there is one Cross-Cutting Objective on autism in women and girls. This 2019-2020 IACC Autism Research Portfolio Analysis Report presents trends in autism research funding from 2008 to 2020 and alignment of research projects with the primary Objectives of the 2016-2017 IACC Strategic Plan, as well as the Cross-Cutting Objective. An analysis of funding for projects that align with the Cross-Cutting Theme on disparities in autism, introduced in the 2017-2018 Portfolio Analysis Report, is also included.

To ensure that the portfolio analysis represents the most comprehensive view of the U.S. autism research landscape, ONAC and the IACC regularly review available information about autism research to identify additional funders to partner in this effort. In 2019 and 2020, five federal funders and four private funders, each of which is supporting autism biomedical and services research, were added to the portfolio analysis. This ensures that the Portfolio Analysis Report provides as accurate an estimate as possible of total autism research funding in the United States.

Accompanying the 2019-2020 IACC Autism Research Portfolio Analysis Report is detailed federal and private funder project data, available in the Autism Research Database (ARD) and accessible via the IACC website (https://iacc.hhs.gov/funding/data/). This database provides the autism community and other members of the public with a centralized place from which to gather valuable information about autism research that can support their efforts to serve the autism community. See Appendix E for additional information about the ARD.

The IACC Strategic Plan Questions and Corresponding Research Areas

ONAC requested information on 2019 and 2020 autism research projects funded by federal agencies and private organizations, including the annual funding amount and the relevance of each project to the seven critical Questions of the 2016-2017 IACC Strategic Plan. The seven IACC Strategic Plan Questions are also represented by corresponding research areas, illustrated below (Figure 1).

• Strengthen the evidence base for the benefits of early detection of autism.
• Reduce disparities in early detection and access to services.
• Improve/validate existing or develop new tools, methods, and service delivery models for detecting autism in order to facilitate timely linkage of individuals on the autism spectrum to early, targeted interventions and supports.

• 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.
• Support research to understand the underlying biology of co-occurring conditions in autism and to understand the relationship of these conditions to autism.
• Support large-scale longitudinal studies that can answer questions about the development of autism from pregnancy through adulthood and the natural history of autism across the lifespan.

• Strengthen understanding of genetic factors for autism across the full diversity and heterogeneity of those with autism, enabling development of strategies for reducing disability and co-occurring conditions in autism.
• Understand the effects on autism of individual and multiple exposures in early development, enabling development of strategies for reducing disability and co-occurring conditions in autism.
• Expand knowledge about how multiple environmental and genetic factors interact through specific biological mechanisms to manifest in autism phenotypes.

• Develop and improve pharmacological and medical interventions to address both core symptoms and co-occurring conditions in autism.
• Create and improve psychosocial, developmental, and naturalistic interventions for the core symptoms and co-occurring conditions in autism.
• 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 on the autism spectrum, 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 the 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 autism surveillance systems to further understanding of the population of individuals on the autism spectrum, while allowing comparisons and linkages across systems as much as possible.

• Support research to understand the underlying biology of sex differences in autism, 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.
• Support advances in research and improvements in services access and delivery that reduce disparities for underrepresented and underserved populations.

Figure 1. The seven Questions, corresponding research areas, and the 23 Objectives of the 2016-2017 IACC Strategic Plan, including the Cross-Cutting Objective on autism in women and girls, as well as the Cross-Cutting Theme on disparities in autism.

Subcategory Classification

In 2010, the Subcategory classification system (Figure 2) was introduced to the IACC Portfolio Analysis Reports. The application of Subcategory coding to projects helps to divide the portfolio into easy-to-understand topical areas, such as "Cognitive Studies," "Family Well-Being and Safety," and "Data Tools." This breakdown helps the Committee and other readers of the report understand the types of research encompassed by the projects in the research portfolio. For the Subcategory analysis, each project was assigned to a Question and then a Subcategory based on the research area it addresses.

Figure 2. The Subcategory classification system used to code projects in the Portfolio Analysis Report. This allows for an understanding of the autism research portfolio based on simple research topics that are relevant to each of the IACC Strategic Plan Questions. Appendix C provides detailed definitions of the Subcategory research areas for each Question.