Appendix A: Supplemental Tables

Year	Private Funding	Federal Funding	ARRA Funding	Total Funding
Year 2008	Private Funding $78,490,497	Federal Funding $143,724,845	ARRA Funding N/A	Total Funding $222,215,342
Year 2009	Private Funding $76,958,649	Federal Funding $173,526,725	ARRA Funding $63,900,000	Total Funding $314,385,374
Year 2010	Private Funding $74,135,764	Federal Funding $274,541,512	ARRA Funding $59,900,000	Total Funding $408,577,276
Year 2011	Private Funding $66,758,516	Federal Funding $233,120,629	ARRA Funding N/A	Total Funding $299,879,145
Year 2012	Private Funding $71,814,178	Federal Funding $260,135,755	ARRA Funding N/A	Total Funding $331,949,933
Year 2013	Private Funding $72,940,246	Federal Funding $232,639,886	ARRA Funding N/A	Total Funding $305,580,132
Year 2014	Private Funding $59,356,793	Federal Funding $250,517,114	ARRA Funding N/A	Total Funding $309,873,907
Year 2015	Private Funding $65,026,914	Federal Funding $277,609,115	ARRA Funding N/A	Total Funding $342,636,029
Year 2016	Private Funding $72,699,481	Federal Funding $291,735,773	ARRA Funding N/A	Total Funding $364,435,254
Year 2017	Private Funding $74,126,021	Federal Funding $307,750,413	ARRA Funding N/A	Total Funding $381,876,434
Year 2018	Private Funding $67,352,634	Federal Funding $326,860,127	ARRA Funding N/A	Total Funding $394,212,761
Year 2019	Private Funding $74,326,593	Federal Funding $349,875,753	ARRA Funding N/A	Total Funding $424,202,347
Year 2020	Private Funding $73,073,062	Federal Funding $345,842,322	ARRA Funding N/A	Total Funding $418,915,385

Table 10. Federal and private autism research funding from 2008 to 2020, including supplementary funding provided by the American Recovery and Reinvestment Act (ARRA) in 2009 and 2010.

Strategic Plan Question	Year	Federal	Private
Strategic Plan Question Question 1: Screening and Diagnosis	Year 2019	Federal $20,917,125	Private $1,960,889
	Year 2020	Federal $27,388,952	Private $2,507,612
Strategic Plan Question Question 2: Biology	Year 2019	Federal $167,654,187	Private $24,613,163
	Year 2020	Federal $165,552,455	Private $24,736,804
Strategic Plan Question Question 3: Genetic and Environmental Factors	Year 2019	Federal $57,942,502	Private $24,041,016
	Year 2020	Federal $53,850,226	Private $19,475,869
Strategic Plan Question Question 4: Interventions	Year 2019	Federal $40,426,210	Private $6,552,181
	Year 2020	Federal $29,763,206	Private $6,073,684
Strategic Plan Question Question 5: Services and Supports	Year 2019	Federal $18,489,414	Private $2,180,709
	Year 2020	Federal $30,313,072	Private $4,990,695
Strategic Plan Question Question 6: Lifespan	Year 2019	Federal $17,065,214	Private $991,012
	Year 2020	Federal $17,291,396	Private $677,877
Strategic Plan Question Question 7: Infrastructure and Prevalence	Year 2019	Federal $27,381,101	Private $13,987,623
	Year 2020	Federal $21,683,015	Private $14,610,521

Table 11. Federal and private funding amounts for each Question area of the IACC Strategic Plan in 2019 and 2020.

Strategic Plan Question	Year	Specific to Objectives	Core/Other
Strategic Plan Question Question 1: Screening and Diagnosis	Year 2019	Specific to Objectives $21,882,829	Core/Other $995,185
	Year 2020	Specific to Objectives $29,048,232	Core/Other $848,332
Strategic Plan Question Question 2: Biology	Year 2019	Specific to Objectives $186,317,244	Core/Other $5,950,106
	Year 2020	Specific to Objectives $189,340,601	Core/Other $948,658
Strategic Plan Question Question 3: Genetic and Environmental Factors	Year 2019	Specific to Objectives $81,983,518	Core/Other $0
	Year 2020	Specific to Objectives $73,153,361	Core/Other $172,734
Strategic Plan Question Question 4: Interventions	Year 2019	Specific to Objectives $46,398,497	Core/Other $579,894
	Year 2020	Specific to Objectives $35,261,544	Core/Other $575,346
Strategic Plan Question Question 5: Services and Supports	Year 2019	Specific to Objectives $19,795,124	Core/Other $875,000
	Year 2020	Specific to Objectives $34,278,767	Core/Other $1,025,000
Strategic Plan Question Question 6: Lifespan	Year 2019	Specific to Objectives $18,056,126	Core/Other $100
	Year 2020	Specific to Objectives $17,969,273	Core/Other $0
Strategic Plan Question Question 7: Infrastructure and Prevalence	Year 2019	Specific to Objectives $36,276,966	Core/Other $5,091,758
	Year 2020	Specific to Objectives $31,378,726	Core/Other $4,914,810

Table 12. 2019 and 2020 funding amounts for autism projects assigned to a specific Strategic Plan Objective and for projects designated as Core/Other by Strategic Plan Question area.

Appendix B: Federal Agency and Private Organization Descriptions

Federal Agencies – Department of Health and Human Services (HHS)

Administration for Community Living (ACL)

Formed in 2012, ACL serves as the federal agency responsible for increasing access to community supports, while focusing attention and resources on the unique needs of older adults and people with disabilities across the lifespan. ACL awards grants primarily to state and local governments, nonprofit organizations, institutions of higher education, and small businesses. Some are awarded in accordance with formulas (mandatory grants) established in legislation, while others are awarded in a competitive process (discretionary grants). ACL funds the AutismNOW web resource hosted by the Arc, which provides information for the autism community on topics including detection, intervention, education, transition from high school into early adulthood, employment, advocacy, community inclusion, aging issues, and public policy.

Agency for Healthcare Research and Quality (AHRQ)

The mission of AHRQ is to produce evidence to make health care safer; higher quality; more accessible, equitable, and affordable; and to work within HHS and with other partners to make sure that the evidence is understood and used. Grant applications submitted to AHRQ undergoes a peer review process, and the Agency decides which applications to fund based on scientific and technical merit, Agency research priorities, and availability of grant funds. AHRQ’s autism portfolio includes projects to evaluate the comparative effectiveness of autism interventions and to conduct systematic reviews of the literature on topics such as autism screening and autism interventions, with the goal of evaluating the strength of the evidence supporting practices and identifying gaps in research. AHRQ also funds projects aimed at disseminating information about best practices and other findings from their reviews to researchers, practitioners, the patient community, and other stakeholders.

Centers for Disease Control and Prevention (CDC)

The mission of CDC is to protect America from health, safety and security threats, both foreign and in the U.S. To accomplish this mission, CDC conducts critical science and provides health information that protects the nation against expensive and dangerous health threats, and responds when these arise. CDC awards and administers grants and cooperative agreements to transfer money, technical assistance, and expertise to partners in exchange for their contributions to federal public health goals and objectives. CDC’s autism research portfolio includes projects to collect data on autism prevalence, factors that may contribute to autism, and projects to improve awareness, early detection, and intervention. CDC funds the Autism and Developmental Disabilities (ADDM) Network, a group of programs that aim to estimate the number of children with autism and other developmental disabilities living in different areas of the United States. CDC also funds the Study to Explore Early Development (SEED), which is currently the largest study in the United States to help identify factors that may increase the probability of autism and other developmental disabilities.

Food and Drug Administration (FDA)

The FDA is responsible for protecting the public health by ensuring the safety, efficacy, and security of human and veterinary drugs, biological products, and medical devices; and by ensuring the safety of our nation’s food supply, cosmetics, and products that emit radiation. The Administration achieves this mission by applying the latest technology and science-based standards to the regulatory challenges presented by drugs, biologics, medical devices, food additives, and tobacco. The FDA supports the Autism Biomarkers Consortium for Clinical Trials (ABC-CT) in collaboration with NIH and other funding partners.

Health Resources and Services Administration (HRSA)

HRSA is the primary federal agency for improving access to health care services for people who are uninsured, isolated, or medically vulnerable. HRSA fulfills its mission through grants and cooperative agreements. Applications submitted to HRSA undergo technical review by a panel of independent experts, and HRSA determines who will receive awards based on input from the technical review and ensures that the projects are financially viable and comply with program requirements. The Maternal and Child Health Bureau (MCHB) supports autism-related programs through the Autism CARES Act of 2019, including projects to increase awareness, reduce barriers to screening and diagnosis, promote the development of guidelines for evidence-based practices, and train health care professionals to provide screening as well as diagnostic and early, evidence-based intervention. Flagship programs include the Autism Intervention Research Networks (AIR-B and AIR-P), the Developmental Behavioral Pediatrics Research Network (DBPNet), and the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program.

National Institutes of Health (NIH)

The NIH is the nation's medical research agency and works to turn scientific discoveries into better health for all. NIH provides financial support for research and research-related activities in the form of grants, cooperative agreements, and contracts. Applications for funding are assigned to an NIH Institute or Center (IC) and a scientific review group for evaluation of scientific and technical merit. Applications undergo a rigorous two-stage review carried out by non-federal scientists, followed by Advisory Councils or Boards. Following review of all applicable information, the IC considers the score given to an application during the peer review process, the IC’s portfolio balance, public health needs, programmatic relevance, IC priorities, requirements specified in congressional appropriations, and availability of funds to determine which applications are funded. NIH supports a broad range of research on autism, including projects on the basic neuroscience of autism, genetic and environmental factors, diagnosis, interventions, and services research. One of NIH’s flagship autism programs, the Autism Centers of Excellence (ACE) Program, funds a collection of research centers and networks across the country that conduct research on autism. To support and accelerate research on the biology underlying autism and effective interventions for autistic individuals, NIH created the National Database for Autism Research (NDAR) as an informatics system and central repository for data from people on the autism spectrum. Beginning in 2020, data that were previously stored in NDAR, as well as new data from autism studies, are now incorporated in the National Institute of Mental Health Data Archive (NDA).

Other Federal Departments and Agencies

Defense Advanced Research Projects Agency (DARPA)

DARPA’s mission is to make pivotal investments in breakthrough technologies for national security. DARPA pursues opportunities for transformational, rather than incremental, change in collaboration with academic, corporate, and government partners. Program managers, individuals at the top of their field from academia, industry, and government agencies, are invited to DARPA for three-to-five-year terms to run programs with ambitious goals and high-level vision, funding researchers in academia and across industry. DARPA recently funded a project using artificial intelligence to validate biomarkers for autism.

Department of Defense – Army (DoD – Army)

The DoD is charged with coordinating and supervising all agencies and functions of the government directly concerned with national security and the U.S. Armed Forces. Within the DoD’s Army Defense Health Research Program, the Congressionally Directed Medical Research Program (CDMRP) Autism Research Program (ARP) was established in 2007, with the mission to improve the lives of individuals with autism by promoting innovative research that advances the understanding of autism and leads to improved outcomes for those on the autism spectrum. The projects that the ARP funds span the scope of the IACC Strategic Plan. In addition, other CDMRP Research Programs such as the Neurofibromatosis Research Program (NFRP) and the Tuberous Sclerosis Complex Research Program (TSCRP) also fund research projects relevant to autism. CDMRP applications undergo both peer and programmatic review to ensure scientific excellence and programmatic relevance. Review panels are made up of scientists, clinicians, consumers from advocacy communities, members of the military, and other specialists as applicable to the award mechanism and program area. Consumers on the review panel play a major role in ensuring that the research is relevant and has the potential to make a significant impact on the affected community.

Department of Education (ED)

The mission of ED is to promote student achievement by fostering educational excellence and ensuring equal access. ED offers both discretionary grants awarded in a competitive process and formula grants which use formulas determined by Congress and has no application process. For funding opportunities through ED’s Institute for Education Sciences, applications undergo a peer review process similar to that of NIH before funding decisions are made. The Department funds a portfolio of autism-related projects concerning the development and delivery of educational interventions and services, particularly for children and transition-age youth. A large portion of ED’s funding goes towards developing practitioner training as well as investment in training researchers.

Environmental Protection Agency (EPA)

The mission of the EPA is to protect human health and the environment. EPA co-funds the Center for Children’s Environmental Health (CCEH) at the University of California, Davis with the National Institute of Environmental Health Sciences, NIH, which conducts research into how environmental exposure to toxins might interact with a person’s genes and immune system to influence the probability and characteristics of autism. Applications for EPA funding opportunities go through a rigorous peer review by a panel of external experts in the applicable fields of study. Grant applications that receive high scores from the peer review then undergo an internal programmatic review involving program experts from the EPA. Following these reviews, EPA’s National Center for Environmental Research Director will determine what applications will be recommended for funding.

Institute of Museum and Library Services (IMLS)

The mission of IMLS is to advance, support, and empower America’s museums, libraries, and related organizations through grantmaking, research, and policy development. IMLS funds research grants to develop services that aim make libraries and museums more accessible for autistic individuals. All proposals submitted for IMLS competitive awards are reviewed by library and museum professionals who know the needs of communities, can share promising practices, and are well versed in the issues and concerns of museums and libraries.

National Endowment for the Arts (NEA)

The NEA is an independent federal agency and the largest funder of the arts and arts education in communities nationwide and a catalyst of public and private support for the arts. One of the core functions of the NEA is funding research into the value and impact of the arts. NEA's autism research portfolio includes projects on the use of art to advance health and well-being for autistic individuals, such as through arts-based interventions, and on how the arts can be used to prepare individuals on the autism spectrum for employment. Proposals for funding submitted to the NEA are reviewed by a panel of individuals who represent a broad range of artistic and cultural viewpoints, as well as wide geographic and ethnic diversity, to provide advice about the artistic excellence and artistic merit of proposals in a variety of funding categories.

National Science Foundation (NSF)

NSF is an independent federal agency, formed by Congress to promote the progress of science and to advance the national health, prosperity, and welfare. NSF funds basic research in biology, mathematics, computer science, and the social sciences as well as technology development, but it does not focus on health or disease-related research. Applications submitted to NSF undergo peer review by external expert reviewers. The NSF Program Officer then reviews the proposal and input from reviewers and make recommendations for funding based on various factors, including significance, potential to be transformational for a field, capacity for building a new and promising area of research, or achievement of specific program goals. Although NSF does not have a program focused on autism, it funds several projects that involve basic science or technologies with the potential to be applied to autism in the future. NSF is a leading funder of projects involving technological interventions and supports, including artificial intelligence, robotics, and virtual reality technologies that could be used to enhance daily living skills and activities of individuals with disabilities.

Social Security Administration (SSA)

The mission of the SSA is to advance the economic security of the nation’s people through compassionate and vigilant leadership in shaping and managing America’s Social Security programs. SSA funds research on retirement and disability for undergraduate students, graduate students, and recent PhD recipients. While SSA does not have an autism-specific program, the Administration funds research on employment for individuals on the autism spectrum through its disability research programs.

Private Organizations

Autism Research Institute (ARI)

ARI’s mission is to meet the needs of the global autism community through research, networking, education, and support for families and people of all ages on the autism spectrum. ARI is dedicated to developing a standard of care for individuals with autism and their families and funds a range of research with a particular emphasis on investigation of the biological underpinnings of autism, including immune and metabolic pathways.

Autism Science Foundation (ASF)

ASF’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing, and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. ASF funds the Autism Sisters Project, which recruits unaffected sisters of individuals with autism to help researchers understand the female protective effect. ASF also supports the Baby Siblings Research Consortium, a network of researchers studying the earliest behavioral and biological features of autism. In addition, ASF funds pre- and postdoctoral trainees to conduct basic and clinical research relevant to autism, including studies focused on a wide range of topics such as identification of biomarkers, molecular and cellular mechanisms, genetic and environmental factors, interventions, and service delivery.

Autism Speaks (AS)

Autism Speaks is the world’s largest autism science and advocacy organization, dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism; and advancing research into causes and better interventions for autism and related conditions. Autism Speaks funds a broad profile of autism research ranging from basic neuroscience and the molecular causes of autism to implementation and testing of interventions for those diagnosed with autism. Autism Speaks supports the Autism Care Network, which connects families, researchers, and health care teams across the United States and Canada to continuously improve person- and family-centered autism care. Autism Speaks also collaborates with Google and the wider research community to create MSSNG, the world’s largest genomic database on autism, with the goal of providing the best resources to enable identification of autism subtypes and provide better diagnostics and more personalized interventions.

BRAIN Foundation (BRAIN)

The mission of the BRAIN Foundation is to support translational research that will lead to the development of FDA-approved treatments and improved standard of care for co-occurring conditions in individuals with autism. The BRAIN Foundation’s research portfolio includes funding for research to develop biomarkers, study immunity and gut dysfunction in autism, understand cellular-level differences that contribute to autism, and conduct clinical treatment trials, as well as initiatives that seek to increase access to care and bridge the gap between research, clinical care, and technology through outreach physician programs.

Brain & Behavior Research Foundation (BBRF)

BBRF is the nation’s top non-governmental funder of mental health research grants and funds basic neuroscience research to elucidate the molecular mechanisms underlying brain disorders and conditions. BBRF’s autism research portfolio primarily includes studies on the genetics and molecular mechanisms underlying autism.

Eagles Autism Foundation (Eagles)

The Eagles Autism Foundation supports the highest quality and most impactful autism research and care to improve the lives of individuals with autism and their families and foster the acquisition of knowledge, technologies, and discoveries that will bring new opportunities in the future. The Foundation’s research portfolio includes research on screening and diagnosis, the biology underlying autism and co-occurring conditions, genetic and environmental factors that may contribute to autism, interventions, and services.

Els for Autism Foundation (ELS)

The Els for Autism Foundation is committed to better understanding the aspirations of people with autism and helping them reach their full potential through better understanding of autism and facilitating the development and delivery of treatment therapies, educational, training, recreational, and independent living programs; developing global outreach to facilitate the sharing of best practices and programs; and raising awareness and promoting the value, acceptance, and inclusion of people with autism. The Foundation’s research portfolio includes studies to improve diagnostic tools, better understand the biology of autism and the genetic and environmental factors that contribute to development of autism, and improve interventions and services.

Escher Fund for Autism/Escher Family Fund (EFA)

The Escher Fund for Autism is a donor advised fund at Schwab Charitable. Together with sister fund the Escher Family Fund of Silicon Valley Community Foundation, it promotes science education and spearheads research projects to examine disruptive germline programming and gametic effects of drug, smoking, and chemical exposures, with an emphasis on risk for ensuing abnormal neurodevelopment in offspring.

FRAXA Research Foundation (FRAXA)

FRAXA’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. The Foundation directly funds research grants and fellowships at top universities around the world. It partners with biomedical and pharmaceutical companies, large and small, to bridge the gap between research discoveries and actual treatments. Fragile X syndrome is the leading known single gene cause of autism, and FRAXA funds research projects that are related to understanding autistic features in Fragile X.

New England Center for Children (NECC)

NECC is a private, nonprofit autism research and education center dedicated to transforming the lives of children with autism worldwide through education, research, and technology. NECC strives to be a global leader in the provision of effective, evidence-based educational services for the millions of underserved children with autism and their families.

New Jersey Governor’s Council for Medical Research and Treatment of Autism (NJGCA)

NJGCA was created by state appropriation in 1999 and has been issuing research, clinical, and educational enhancement grants since 2000. The Council’s vision is to enhance the lives of individuals with autism across their lifespans. The mission of the Council is to advance and disseminate the understanding, treatment, and management of autism by means of a coordinated program of biomedical research, clinical innovation, and professional training in New Jersey.

Organization for Autism Research (OAR)

The mission of OAR is to support research that directly impacts the day-to-day quality of life of those with autism. This includes research to inform and improve education, communication, self-care, social skills, employment, behavior, and adult and community living. In this context, it extends to issues related to family support, the efficacy of service delivery systems, and demographic analyses of the autism community.

Patient-Centered Outcomes Research Institute (PCORI)

PCORI helps people make informed health care decisions and improves health care delivery and outcomes by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader health care community. PCORI’s research portfolio primarily includes studies on improving services, including in educational settings, for children, transition-age youth, and adults on the autism spectrum and their families.

Simons Foundation (SF)/Simons Foundation Autism Research Initiative (SFARI)

The mission of Simons Foundation is to advance the frontiers of research in mathematics and the basic sciences. Simons Foundation’s single largest initiative is SFARI, which seeks to improve the diagnosis and treatment of autism by funding, catalyzing, and driving innovative research of the greatest quality and relevance. The Simons Foundation autism portfolio includes research on genetic and cellular factors underlying autism, identification of genetic and environmental factors that contribute to autism, and development of potential treatments. Simons Foundation supports the Simons Simplex Collection, SPARK for autism, and Autism BrainNet, three major programs that conduct research and provide important research resources for the autism community.

Thrasher Research Fund (Thrasher)

The Thrasher Research Fund provides grants for clinical, hypothesis-driven research that offer substantial promise for meaningful advances in the prevention, diagnosis, and treatment of children’s diseases, particularly research that offers broad-based applications. The Fund provides support for studies to improve medical interventions for autism and co-occurring conditions.

Tuberous Sclerosis Alliance (TSCA)

TSCA is dedicated to finding a cure for tuberous sclerosis complex (TSC), while improving the lives of those affected. Serving as a leader in the rare disease community, TSCA’s goals are to accelerate research, improve access and quality of care, support and empower constituents, educate and mobilize to increase investment, and build and strengthen organization. An estimated 40-50% of individuals with TSC have autism, and TSC is a leading genetic cause of syndromic autism. TSCA funds research that focuses on the connection between autism and TSC.

Appendix C: Subcategory Definitions

Diagnostic and Screening Tools

This Subcategory includes projects that are developing new autism diagnostic and screening tests, as well as those establishing the usefulness of new or revised assessments for autism symptoms. It also encompasses projects aimed at improving early identification services and adapting clinical assessments into other languages for use in multi-lingual community settings and countries in addition to the United States.

Early Signs and Biomarkers

Projects which use a variety of methods to search for signs of autism in very young children (generally under age 3) that could be used for diagnosis, such as eye-tracking, physiological measures, and autism-specific behavioral patterns are included in this Subcategory. More examples include projects investigating metabolic measures, such as the levels of specific chemicals, hormones, or proteins in the blood that could be used as biomarkers of the disorder.

Phenotypes/Subgroups

Included in this Subcategory are projects aimed at identifying distinct subgroups of people with autism, or those that share common morphological, physiological, or behavioral features. Projects in this Subcategory use a variety of methods to identify and distinguish these groups.

Spectrum of Characteristics

These projects seek to define the broad range of autism characteristics, including both biological and behavioral features. Among these studies are some that examine how children and adults with autism vary in their development of social communication, language, cognitive ability, sensory sensitivities, and executive functioning ability. Other projects seek to understand how differences in neurocognitive development can contribute to phenotypic variability in those with an autism diagnosis. In previous editions of the Portfolio Analysis Report, this Subcategory was named “Symptomology.” There were no changes made to the inclusion criteria for this Subcategory.

Cognitive Studies

These are studies of psychological and mental processes, including memory, producing and understanding language, solving problems, and making decisions. Projects in this Subcategory consist of those that investigate theory of mind, social cognition, emotion regulation, and recall and memory.

Computational Science

Computational methods and modeling allow for the synthesis and study of large and complex sets of data. Some projects in this Subcategory collect extensive experimental biological and behavioral data and use powerful computing techniques to reveal new insights. Other aspects of computer science are also included, such as developing statistical modeling techniques to better understand the biology of autism.

Co-Occurring Conditions

Research on physical and mental health conditions that often co-occur with autism is included here, such as seizures/epilepsy, sleep disorders, gastrointestinal dysfunction, autoimmune disorders, attention deficit hyperactivity disorder (ADHD), anxiety, depression, and suicidality.

Developmental Trajectory

Projects in this Subcategory often include longitudinal studies following various aspects of biological and behavioral development in the same individuals over time. Examples include brain growth, face processing, change in neural connectivity over time, and development of communication skills and language processing. These studies often compare children with autism to their unaffected siblings or other typically developing children.

Immune/Metabolic Pathways

These projects focus on understanding the biological mechanisms of metabolism and the immune system that may be altered in autism, typically using cell cultures and animal models. This largely includes studies on inflammation and inflammatory molecules (i.e., cytokines), as well as on the role of the mitochondria, energy metabolism, and oxidative stress. Also included in this group are projects seeking to identify specific immune and metabolic triggers in early prenatal and post-natal life, such as maternal infection, maternal auto-antibodies, and environmental exposures.

Molecular Pathways

This Subcategory includes studies on specific molecules and proteins (other than the immune and metabolic systems) that may be involved in the development of autism and related genetic disorders (e.g., fragile X syndrome and Rett syndrome). Many of these projects use animal and cellular models to explore the biological effects of specific candidate genes and to identify common molecular pathways, including alterations in synaptic functioning and intracellular signaling cascades.

Neural Systems

Studies in this Subcategory explore the structure and activity of the brain and underlying neural systems involved in autism, including functional connections between brain regions. Many projects seek to identify the precise neural networks and circuits underlying communication and language processing, social interactions, and behavioral issues. These studies frequently employ imaging techniques, such as functional magnetic resonance imaging (fMRI) and diffusion tensor imaging (DTI), and other physiological measures of brain activity, such as electroencephalography (EEG).

Neuropathology

These projects typically include post-mortem examination of brain tissue from individuals with autism. Many of the studies in this Subcategory explore how the architecture of the brain may be altered in individuals with autism or how gene expression varies in different areas of the brain.

Sensory and Motor Function

Projects in this Subcategory explore the neural underpinnings of motor skills and abilities in children with autism and assess visual, auditory, and other sensory processes in the brain.

Subgroups/Biosignatures

Because there is so much heterogeneity among individuals with autism, research to understand how certain subgroups of individuals that share certain behavioral or biological characteristics could help clarify some of the underlying biology in autism. This can be done by searching for certain biological factors (“signatures”), such as patterns of gene expression, hormone levels, or structural differences in the brain, that define a particular subgroup. Many of these projects try to make the connection between certain genes with a known or suspected link to autism and the observable characteristic, or phenotype, that they cause.

Environmental Factors

This Subcategory includes projects investigating environmental factors that may contribute to the development of autism. Examples include studies of how changes of the microbiome, environmental exposures, assistive reproductive treatments, paternal factors, and maternal factors (such as diet, medications taken during pregnancy or to induce labor, perinatal conditions, child and maternal response to immune challenge) may contribute to autism, and registries where many of these factors can be tracked simultaneously.

Epigenetics

Epigenetics is the study of how changes in behaviors, physiology, and/or the environment (including paternal and maternal factors) can affect gene activity without changes in DNA sequence. Unlike genetic changes, which change the actual sequence of nucleotides in DNA, epigenetic changes can modify how DNA sequences are read and how genes are expressed (such as through methylation of DNA). These changes can be transient and reversible, or they may be heritable in some circumstances. Projects in this Subcategory seek to identify some of the influences that may lead to these epigenetic changes and how these epigenetic changes may contribute to autism development.

Gene-Environment

These studies include efforts to identify and understand how the interactions of environmental factors (including paternal and maternal factors), genetic susceptibility, and/or human physiology (e.g., the immune system, metabolic processes) may contribute to the development of autism. (Note: While epigenetic studies are a subset of gene-environment studies, they are tracked as a separate Subcategory because there is a substantial number of these projects, and the topic of epigenetics is of significant public interest.)

Genetic Factors

Projects in this Subcategory seek to identify new genes that are implicated in increased probability of autism or to better understand genetic factors that were previously identified.

Behavioral

Projects in this Subcategory involve a wide array of behavioral research and training methods, including applied behavior analysis (ABA), naturalistic developmental behavioral interventions (NDBI), cognitive-behavioral therapy, discrete trial training, Early Start Denver Model, imitation training, joint attention training, Lovaas method, pivotal response training, sibling-mediated interventions, and social skills training.

Complementary, Dietary, and Alternative

This Subcategory includes research on acupressure; acupuncture; antioxidants; use of dietary and nutritional supplements, vitamins, and minerals; probiotics; and special diets (e.g., gluten-free, casein-free).

Educational

Nearly all research in classroom settings falls under this Subcategory, including curricula, educational best practices, inclusive education programs, math and reading training, positive behavioral supports, special education programs, TEACCH (Treatment and Education of Autistic and Related Communication-Handicapped Children), and the “Social Stories” approach.

Medical/Pharmacologic

This Subcategory includes research on drugs (e.g., antidepressants, anticonvulsants, antipsychotics, anxiolytics, melatonin, and stimulants) to treat autism and its co-occurring conditions, as well as medical therapies such as transcranial magnetic stimulation (TMS).

Model Systems/Therapeutic Targets

Animal models of autism and those that are being used to develop or test new drug treatments, as well as cell lines used to discover new drug targets or to screen potential drug candidates, are included in this Subcategory.

Occupational, Physical, and Sensory-Based

Therapies in this Subcategory encompass art therapy, motor training (including fine motor skills such as handwriting as well as gross motor training involving balance and posture), music therapy, occupational therapy, pet (animal) therapy, physical activity plans and exercise therapy (bike riding, swimming), physical therapy, sensory integration, therapeutic horseback riding, training in self-care and daily living skills, and vocational rehabilitation.

Technology-Based

Augmentative and alternative communication (AAC), computer applications and software, picture exchange communication system (PECS), social robots, interventions delivered via telehealth and online platforms, video modeling and virtual reality (including virtual and 3D environments to mimic social situations), and wearable sensors are all examples of the types of technology in the projects in this Subcategory.

Community Inclusion Programs

These programs provide instruction in social, communication, and leisure skills to enable individuals with autism to participate in sports, recreation, and social-integration activities in fully integrated settings and to build successful relationships with others.

Efficacious and Cost-Effective Service Delivery

This Subcategory includes programs involving web-based curricula and interventions as well as telehealth methodology, all of which could benefit those in underserved areas. Various parent training projects (to deliver a behavioral therapy, for example) using web-based methods such as teleconsultation and video feedback make distributing the training programs cost-effective and accessible across the country. Studies to improve dental care are also in this Subcategory for effective service delivery.

Family Well-Being and Safety

Studies in this Subcategory evaluate issues of caregiver stress and measures of quality of life for individuals with autism and their families, as well as assess programs to help parents navigate the service system after their child receives an autism diagnosis. It also surveys safety issues for those on the autism spectrum, including wandering and bullying.

Practitioner Training

Projects in this Subcategory seek to increase skill levels in service providers, including medical service providers, direct support workers, parents and legal guardians, education staff, and public service workers.

Services Utilization and Access

These projects include surveys of service systems available in different states, evaluations of patterns of medical service use among children with autism, comprehensive online resources for autism services, and specific efforts in several states to coordinate services for people with autism. They also evaluate disparities in diagnosis and service utilization as well as barriers to access for underserved communities.

Community Integration Supports and Services

This Subcategory includes projects that enhance community services to increase inclusion and develop interventions and supports to improve community involvement among transition-age youth and adults on the autism spectrum; this Subcategory also includes any sibling and caregiver engagement services and interventions.

Daily Life Skills

Research in this Subcategory focuses on independent living skills instruction (e.g., executive function, self-determination, goal setting) for youth and adults with autism.

Health and Behavioral Outcomes

Projects in this Subcategory focus on understanding and improving health-related outcomes for youth and adults, including interventions for autism and co-occurring conditions, behavioral outcomes, and other longitudinal studies.

Health Care Systems/Health Care Transitions

These projects are focused on efforts to improve provider-patient experiences and interactions across the lifespan; this category includes screening and diagnostic tools focused on youth and adults (not solely autism-specific tools).

Transition to Adulthood and Postsecondary Outcomes

These projects focus on services, tools, and interventions that are helpful to youth making the transition out of high school. Often, these focus on education and employment. This Subcategory also focuses on young adulthood and projects that support postsecondary outcomes such as college experiences, employment, and quality of life outcomes.

Biobanks

A biobank is a type of biorepository which stores human biological samples for use in research. Projects in this Subcategory support the collection of DNA and tissue samples from autism patients.

Data Tools

These projects include bioinformatics databases to store genetic, phenotypic, and other medical information from autism patients. They also support infrastructure for several of these major databases to interact and dissemination of data to the community and stakeholders.

Prevalence Studies

Research that measures autism prevalence in the United States and internationally is contained in this Subcategory, including the Autism and Developmental Disabilities Monitoring (ADDM) Network sites maintained by the CDC.

Research Infrastructure

This Subcategory includes coordinating centers that support multiple research projects by running tests, analyzing data, providing statistical analyses, and disseminating research to the community. These projects also support facilities that operate large, shared instruments used by several scientists to test research samples.

Research Recruitment and Clinical care

Projects in this Subcategory help increase participation in research studies and conduct medical evaluations for the participants, often collecting data that can be used for multiple studies.

Research Workforce Development

Workshops, conferences, and training programs that serve to expand the research workforce, enhance interdisciplinary research training, and recruit early-career scientists into the autism field are included in this Subcategory.

Appendix D: Autism-Related Research Projects Not Included in the IACC Portfolio Analysis

The IACC Portfolio Analysis Reports also include lists of research projects that were identified while conducting the analysis for this report and are related to autism but do not meet the criteria to be considered autism research. These lists include projects that are not exclusively focused on autism but may have implications for autism research in the future or may be helpful in understanding the broader landscape of ongoing research on developmental disabilities, intellectual disabilities, and other topics of relevance to autism. These autism-related project lists have been included as reference materials for community members, researchers, and funders. Please note that these lists are not comprehensive. If you are interested in viewing the list of autism-related research projects for 2019 and 2020, please visit the webpage below.

Direct link to Autism-Related Research Projects: https://iacc.hhs.gov/publications/portfolio-analysis/2020/asd-related-projects.shtml

Appendix E: Autism Research Database (ARD)

Detailed information about all projects included in the portfolio analysis since 2008, when the IACC began tracking autism funding in the United States, are available online in the Autism Research Database (ARD). For each project, the ARD includes a short description of the funded project as well as information on the principal investigator and funded institution, the funding institution, amount funded, the award period, and how the project aligns with the IACC Strategic Plan Question and Objectives. In addition, the ARD includes analyses of autism funding by Strategic Plan Questions, Objectives, and Subcategories. Analyses of funding information by funder is also available, as well as a breakdown of federal versus private funding for each year of analysis. Multiyear funding information, broken down by Strategic Plan Objectives, is also provided, along with maps showing where autism research projects are taking place each year. In addition to U.S. funding data, information on autism projects funded by international agencies and organizations is available on the ARD.

Direct link to the Autism Research Database: https://iacc.hhs.gov/funding/data/

IACC Committee Member Roster and ONAC Staff List

Chair

Federal Members

Public Members

Office of National Autism Coordination Staff

*Also a staff member of the Office of Autism Research Coordination (OARC), within the Office of National Autism Coordination (ONAC)

About the IACC

The Interagency Autism Coordinating Committee (IACC) is a federal advisory committee charged with coordinating federal activities concerning autism spectrum disorder (ASD) and providing advice to the Secretary of Health and Human Services (HHS) on issues related to autism. The Committee was established by Congress under the Children’s Health Act of 2000, reconstituted under the Combating Autism Act (CAA) of 2006, and renewed most recently under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019.

Membership of the Committee includes a wide array of federal agencies involved in autism research and services, as well as public stakeholders, including autistic adults, family members of those on the autism spectrum, advocates, service providers, and researchers, who represent a variety of perspectives. The IACC’s diverse membership ensures the Committee is equipped to address the broad range of issues and challenges faced by individuals and families in the autism community.

Under the CAA and subsequent authorizations, the IACC is required to (1) develop and annually update a strategic plan for autism research, (2) develop and annually update a summary of advances in autism research, and (3) monitor federal activities related to autism.

Through these and other activities, the IACC provides guidance to HHS and partners with other federal departments, research and advocacy organizations, and the broader autism community to accelerate research and enhance services with the goal of positively impacting the lives of people on the autism spectrum and their families.

For more information about the IACC, see https://iacc.hhs.gov/

Editorial Note on References to Autism: The IACC supports the use of accessible language around autism in its publications. 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 term “autism” is generally used in this document, and “ASD” is used when referring specifically to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR)-defined diagnosis.

Acknowledgments

The IACC Autism Research Portfolio Analysis Reports would not be possible without the cooperation and partnership of the federal departments and agencies and private organizations that support autism research. The time and efforts of all funders who contributed to the portfolio analysis are greatly appreciated by the IACC and the Office of National Autism Coordination. Contributing funders are listed below, and descriptions of their work can be found in Appendix B.

Federal Funders

• Department of Health and Human Services (HHS)
  
  • Administration for Community Living (ACL)
  • Agency for Healthcare Research and Quality (AHRQ)
  • Centers for Disease Control and Prevention (CDC)
  • Food and Drug Administration (FDA)
  • Health Resources and Services Administration (HRSA)
  • National Institutes of Health (NIH)
• Defense Advanced Research Projects Agency (DARPA)
• Department of Defense – Army (DoD – Army)
• Department of Education (ED)
• Environmental Protection Agency (EPA)
• Institute of Museum and Library Services (IMLS)
• National Endowment for the Arts (NEA)
• National Science Foundation (NSF)
• Social Security Administration (SSA)

Private Funders

• Autism Research Institute (ARI)
• Autism Science Foundation (ASF)
• Autism Speaks (AS)
• BRAIN Foundation (BRAIN)
• Brain & Behavior Research Foundation (BBRF)
• Eagles Autism Foundation (Eagles)
• Els for Autism Foundation (ELS)
• Escher Fund for Autism/Escher Family Fund (EFA)
• FRAXA Research Foundation (FRAXA)
• New England Center for Children (NECC)
• New Jersey Governor’s Council for Medical Research and Treatment of Autism (NJGCA)
• Organization for Autism Research (OAR)
• Patient-Centered Outcomes Research Institute (PCORI)
• Simons Foundation (SF)
• Thrasher Research Fund (Thrasher)
• Tuberous Sclerosis Alliance (TSCA)

Cover Design
NIH Medical Arts Branch

Copyright Information
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.

Suggested Citation
Office of National Autism Coordination, National Institute of Mental Health, National Institutes of Health (on behalf of the Interagency Autism Coordinating Committee). 2019-2020 IACC Autism Research Portfolio Analysis Report. March 2024. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: https://iacc.hhs.gov/publications/portfolio-analysis/2020/.