Portfolio Analysis Report
IACC Autism Spectrum Disorder Research
Introduction and Analysis Framework
The Office of Autism Research Coordination (OARC) is the office within the National Institutes of Health (NIH) that manages the activities of the Interagency Autism Coordinating Committee (IACC). In 2008, OARC began issuing a series of IACC Autism Spectrum Disorder (ASD) Research Portfolio Analysis Reports to provide the IACC with comprehensive information about the status of autism research funding among federal agencies and private research organizations in the United States.
In 2009, the IACC produced its first Strategic Plan for Autism Spectrum Disorder Research, providing a framework to guide the efforts of federal and private funders of autism research and developed with extensive input from a broad array of federal and public stakeholders. The 2016-2017 IACC Strategic Plan for Autism Spectrum Disorder organizes research priorities around seven general topic areas represented as community-focused “Questions.” Each Question includes three to four primary Objectives; there is also one Cross-Cutting Objective on the topic of ASD in females. For the most recent 2018-2019 Strategic Plan Update, the Committee agreed that the 2016-2017 IACC Strategic Plan reflected a comprehensive review of the state of the field and therefore no updates to the Objectives were needed. For more details on the Objectives and a description of the latest advances in the field represented by each Question, please reference the 2016-2017 Strategic Plan and the 2018-2019 Strategic Plan Update.
The IACC Portfolio Analysis Reports align data on individual research-related projects with Objectives in the IACC Strategic Plan, providing an accounting of how much funding has supported projects related to Strategic Plan Objectives and highlighting trends. This information has been used to help the IACC in their efforts to monitor ASD research and track funding progress made each year on the Objectives in the IACC Strategic Plan. The 2016 Portfolio Analysis Report was the first portfolio analysis measuring progress made toward the 23 Objectives in the 2016-2017 IACC Strategic Plan. The present 2017-2018 IACC ASD Research Portfolio Analysis Report continues to monitor research funding progress on the 2016-2017 IACC Strategic Plan Objectives, as well as provide an analysis of progress that was made from 2008-2018. In addition, the 2017-2018 Portfolio Analysis Report includes an analysis of projects focused on racial and ethnic disparities in ASD research and introduces a Question 6 subcategory analysis that provides more detail on the breadth of research on ASD lifespan-related issues. These new sections of the portfolio analysis will be described in greater detail within the report.
In order to ensure that the portfolio analysis represents the most current and comprehensive view possible of the autism research landscape in the U.S., OARC and the IACC periodically review available information about autism research funded by U.S. organizations and add new funders willing to partner with the IACC in this effort. In 2017 and 2018, five new private funders were added to the portfolio analysis, each of which is supporting projects in their portfolios related to autism biomedical and services research.
To accompany the 2017-2018 IACC ASD Research Portfolio Analysis Report, detailed federal and private organization project data are available in the Autism Research Database (ARD), accessible via the IACC website (https://iacc.hhs.gov/funding/data/). This database provides stakeholders with a centralized place from which to gather valuable information about ASD research that can support their efforts to serve the autism community.
The IACC Strategic Plan Questions and Corresponding Research Areas
The Office of Autism Research Coordination (OARC) requested information on 2017 and 2018 autism-related 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 for ASD. 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 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 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 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 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 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 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 seven Questions, corresponding research areas, and 23 Objectives of the 2016-2017 IACC Strategic Plan.
In 2010, OARC introduced the subcategory classification system (Figure 2) to the IACC Portfolio Analysis Report to help the Committee and other readers of this report better understand the types of research encompassed by the projects in the research portfolio, especially those projects that are categorized as outside the specific Objectives of the Strategic Plan but within a Question’s research area. For the subcategory analysis, each project was assigned to a subcategory based on the research area it addressed. The application of subcategory coding to projects in the portfolio helps to divide the portfolio into easy-to-understand topical areas. Previously, projects in Question 6 (Lifespan Issues) were not assigned subcategories because the number of projects in this Question area was fairly small. This number has grown in recent years, however, and the 2017-2018 Portfolio Analysis Report introduces five new subcategories for Question 6 (see below).
Figure 2. The subcategory classification system 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. The 2017-2018 Portfolio Analysis Report introduces five new subcategories for Question 6 (Lifespan Issues). Appendix B provides detailed definitions of the subcategory research areas for each Question.
Please note: The terms "person with autism," "person with ASD," "autistic person," and "person on the autism spectrum" are used interchangeably throughout this document. Some members of the autism community prefer one term, while others prefer another. The Committee respects the different opinions within the community on the use of this language and does not intend to endorse any particular preference. In addition, the terms “autism” and “autism spectrum disorder (ASD)" are used interchangeably throughout this document unless otherwise noted.