Autism Research Funders and Funding in 2019 and 2020

Who funded autism research in 2019 and 2020?

Fourteen federal departments and agencies and 16 private organizations contributed their autism research funding information for the 2019-2020 Autism Research Portfolio Analysis Report. These 30 funders are listed in Table 1.¹ The IACC and ONAC routinely review the funding landscape and offer opportunities for additional funders to join the IACC portfolio analysis effort. This regular review enables the report to provide a depiction that is as comprehensive as possible of federal and private contributions to autism research in the United States. Additionally, new funders often expand the scope of autism research and fill in gaps in the field. For the present report, five federal funders and four private organizations were identified and added to the analysis. These additions are the Defense Advanced Research Projects Agency (DARPA), the Food and Drug Administration (FDA), the Institute of Museum and Library Services (IMLS), the National Endowment for the Arts (NEA), the Social Security Administration (SSA), the BRAIN Foundation, the Eagles Autism Foundation, the Els for Autism Foundation, and the Thrasher Research Fund. Added funders accounted for 0.5% ($2.3 million) and 1.2% ($4.9 million) of total funding in 2019 and 2020, respectively. The research projects that are added by these funders are important in understanding the autism research landscape but did not alter the overall funding trajectory observed in the portfolio. Some agencies and organizations included in previous years’ analyses did not have projects to report in 2019 or 2020 or chose not to participate in the present analysis. Brief summaries of the mission areas of each agency and organization that contributed to the 2019-2020 Portfolio Analysis Report can be found in Appendix B.

Federal

Private

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

Private 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)

* Funders newly added to the Portfolio Analysis Report in 2019 and 2020

Table 1. Projects from 14 federal agencies and 16 private organizations were included in the 2019-2020 IACC Autism Research Portfolio Analysis Report.

1. Within the portfolios of funders who focus on rare genetic disorders with strong links to autism (e.g., the Tuberous Sclerosis Alliance), only projects that are directly related to autism were included in the present report analyses.

How much autism research was funded in 2019 and 2020?

Combined, the federal and private investment in autism research was $424,202,347 in 2019 and $418,915,385 in 2020. Overall funding for autism research increased by 7.6% ($30.0 million) from 2018 to 2019. From 2019 to 2020, total autism funding decreased by 1.2% ($5.3 million).

Funders newly added to the portfolio analysis accounted for 7.6% ($2.3 million) of the increase from 2018 to 2019. Not including the contributions of the seven additional funders, funding increased by 7.0% from 2018 to 2019 ($27.7 million). Without newly added funders in 2020, the decrease from 2019 to 2020 was 1.5% ($6.5 million).

The relative proportions contributed by federal and private funders during 2019 and 2020 remained similar from year to year. In 2019, the federal government provided $349.9 million (903 projects) in autism research funding and accounted for 82.5% of overall funding. Private organizations provided $74.3 million (701 projects) in funding, which accounted for 17.5% of the total funding in 2019 (Figure 3). In 2020, the federal government provided $345.8 million (891 projects) in autism research funding and accounted for 82.6% of overall funding. Private organizations provided $73.1 million (682 projects), which accounted for 17.4% of the total funding in 2020 (Figure 4). This breakdown of federal and private funding is consistent with what has been observed in previous years: 83% federal, 17% private in 2018; 81% federal, 19% private in 2017; and 80% federal, 20% private in 2016.

Figure 3. In 2019, 82.5% of autism research funding was provided by federal sources, while 17.5% of funding was provided by private organizations.

Figure 4. In 2020, 82.6% of autism research funding was provided by federal sources, while 17.4% of funding was provided by private organizations.

How many new autism research projects were added in 2019 and 2020 compared to ongoing research?

To evaluate trends in funding directed towards the continuation of ongoing research versus newly initiated projects, the status of each project included in the portfolio analysis is classified as either "Ongoing" or "New." Ongoing projects were active in a previous year, and new projects became active and received funding for the first time in the specified year of analysis. Since most research projects are funded over multiple years, a larger number of ongoing projects compared to new projects is expected. In 2019, 70.0% ($297.1 million) of overall autism research funding went to ongoing projects while 30.0% ($127.1 million) went to new projects. In 2020, 74.4% ($311.7 million) of total autism funding was assigned to ongoing projects while 25.6% ($107.2 million) were new projects. This breakdown is similar to historical trends, which show that ongoing projects typically account for 70-80% of total funding and new projects account for 20-30% (Figure 5).

Figure 5. The percent of autism research funding from 2009 to 2020 directed to ongoing versus new projects.

Funding for new projects increased by $34.9 million (37.8%) in 2019 ($127.1 million) compared to 2018 ($92.2 million). This is at least partially due to the initiation of several large new projects funded by the National Institutes of Health, National Science Foundation, and Department of Defense – Army. In 2020, total funding for new projects ($107.2 million) decreased by $19.9 million (15.7%) compared to 2019. However, 2020 funding for new projects was still $15.0 million (16.2%) more than 2018 funding levels.

What funding trends were observed?

• Overall, autism research funding increased from 2018 to 2020 (Figure 6).
  
  • In 2018, the combined federal and private investment in autism research was $394.2 million.
  • In 2019, the combined federal and private investment in autism research was $424.2 million, an increase of 7.6% ($30.0 million) from the previous year.
  • In 2020, the combined federal and private investment in autism research was $418.9 million, a decrease of 1.2% ($5.3 million) from 2019.
• The amount of federal investment in autism research increased by 7.0% ($23.0 million) in 2019 ($349.9 million) from 2018 ($326.9 million). It decreased by 1.2% ($4.0 million) in 2020 ($345.8 million) from 2019.
• The amount of private investment in autism research increased by 10.4% ($7.0 million) in 2019 ($74.3 million) from 2018 ($67.4 million). It decreased by 1.7% ($1.3 million) in 2020 ($73.1 million) from 2019.
• As described in previous IACC Portfolio Analysis Reports, the American Recovery and Reinvestment Act (ARRA) provided an additional $63.9 million in 2009 and $59.9 million in 2010 to support autism research projects. This created a temporary increase in total autism research funding during those years, resulting in a high of $408.6 million in 2010. In the years following, funding levels decreased in comparison to 2010. With steady increases in recent years, 2019 and 2020 autism funding levels surpassed the previous high in 2010.
• According to an analysis of the impact of inflation over time, however, autism research funding peaked in terms of purchasing power in 2010 at $385.2 million in inflation-adjusted 2008 constant dollars (Figure 7).

Figure 6. 2008-2020 autism research funding from federal (yellow) and private (blue) sources based on data collected for the IACC Portfolio Analysis Report of those years. Yellow dashed shading indicates supplementary funding provided by the American Recovery and Reinvestment Act (ARRA) in 2009 and 2010. Funding amounts in this figure are rounded to nearest tenth of a million. See Table 10 in Appendix A for exact funding amounts for each year.

Figure 7. The history of combined federal and private autism research funding from 2008 to 2020 in actual dollars (blue) and 2008 constant dollars (yellow), based on data collected for the IACC Portfolio Analysis Report for those years. The dotted lines indicate funding levels excluding ARRA stimulus funds, which provided supplementary funding in 2009 and 2010. Inflation effects were calculated using the Biomedical Research and Development Price Index (BRDPI).

From 2008 to 2020, funding increased by 88.5% ($196.7 million), demonstrating an overall trajectory of growth in support of autism research. However, funding has varied from one year to the next during that time (Figure 6). An infusion of funds from the ARRA in 2009 and 2010 took autism research funding to a high of $408.6 million in 2010, but funding then decreased in 2011. There was an increase in 2012, followed by decreases in 2013 and 2014. Steady growth occurred from 2015 through 2018. In 2019, the autism research portfolio was funded at its highest level ever at $424.2 million, representing a 7.6% ($30.0 million) increase from 2018. While this increase over a one-year period is not unprecedented, it was larger than the average yearly increase of 4% from 2016 to 2018. In 2020, funding levels decreased by 1.2% ($5.3 million) compared to 2019, though this was still 6.3% ($24.7 million) higher in comparison to 2018.

Contributors to Funding Trends

Over the years of portfolio analysis tracking, fluctuations in funding have been observed, which can result from factors such as the release of new initiatives and sunsetting of other initiatives, changes in organization budgets and priorities, changes in government appropriations, and the effects of using certain funding mechanisms. For example, some funders allocate all funding to a project in the first year, while others disburse the funds over regularly spaced intervals. These different disbursement mechanisms may result in fluctuation of overall funding levels from one year to another. Additionally, some funders may not have an established and consistent autism research portfolio and thus may provide one-time or sporadic funding for specific autism-related projects or initiatives. Availability of resources for different funders, particularly those in the private sector, may also vary from year to year.

In this Portfolio Analysis Report, a decrease in funding was observed from 2019 to 2020. The above factors may have contributed. It is also important to note that the decrease in 2020 funding levels coincided with the start of the coronavirus disease 2019 (COVID-19) pandemic. Research across many scientific disciplines was affected by the pandemic, and autism research may have been similarly impacted. Monitoring of the 2021 and 2022 funding cycles in future Portfolio Analysis Reports will shed further light on variations in funding levels and the overall trajectory of growth of autism research in recent years.

Where is autism research being funded in the United States?

Figure 8 shows the distribution of autism research projects across the United States funded by both federal agencies and private organizations in 2020. The map shows that research is concentrated along the east and west coasts and in major metropolitan areas or areas with large universities in the middle portion of the country.

The U.S. institutions that received the largest amounts of funding in 2019 and 2020 are the University of California, Davis (UC Davis); Yale University; and the University of California, Los Angeles (UCLA). UC Davis has many investigators collaborating on major autism research initiatives such as the Baby Siblings Consortium and SPARK. It is also the site of the UC Davis MIND Institute, UC Davis Center for Children’s Environmental Health and Disease Prevention (CCEH), and the Center for the Development of Phenotype-Based Treatments of Autism Spectrum Disorder. Yale University is similar in that researchers at the institution are collaborating on several large multisite research projects, such as the Simons Simplex Collection (SSC) and the Autism Biomarkers Consortium for Clinical Trials (ABC-CT). UCLA includes researchers also involved in the Baby Siblings Consortium, as well as the SSC and the Autism Sequencing Consortium (ASC), two major research initiatives investigating the genetics of autism. Many of the other institutions with large amounts of funding are involved in large genetic, biological, and environmental research networks in efforts to increase the study size and quality of the research being conducted. Tables 2 and 3 provide additional information about the institutions and states that received the largest amounts of autism research funding in 2019 and 2020.

Figure 8. A map of the United States displaying the geographic distribution and number of autism research projects funded by federal agencies and private organizations in 2020.

Which U.S. institutions had the highest levels of funding in 2019 and 2020?

2019			2020
Institution	Funding Amount	Number of Projects	Institution	Funding Amount	Number of Projects
Institution University of California, Davis	Funding Amount $19,055,796	Project Count 55	Institution Yale University	Funding Amount $22,230,716	Project Count 60
Institution Yale University	Funding Amount $18,675,010	Project Count 59	Institution University of California, Los Angeles	Funding Amount $21,140,137	Project Count 56
Institution University of California, Los Angeles	Funding Amount $16,411,818	Project Count 54	Institution University of California, Davis	Funding Amount $19,015,227	Project Count 48
Institution University of California, San Diego	Funding Amount $14,614,854	Project Count 34	Institution University of California, San Francisco	Funding Amount $13,425,180	Project Count 37
Institution National Institutes of Health - Intramural	Funding Amount $12,416,823	Project Count 9	Institution Stanford University	Funding Amount $13,346,677	Project Count 33
Institution Stanford University	Funding Amount $11,865,520	Project Count 33	Institution National Institutes of Health - Intramural	Funding Amount $12,846,533	Project Count 10
Institution Vanderbilt University	Funding Amount $11,839,693	Project Count 43	Institution University of California, San Diego	Funding Amount $10,815,459	Project Count 29
Institution University of California, San Francisco	Funding Amount $11,143,393	Project Count 40	Institution Vanderbilt University	Funding Amount $10,725,463	Project Count 37
Institution University of North Carolina at Chapel Hill	Funding Amount $9,644,125	Project Count 41	Institution Washington University in St. Louis	Funding Amount $9,916,891	Project Count 18
Institution Washington University in St. Louis	Funding Amount $9,062,734	Project Count 21	Institution University of North Carolina at Chapel Hill	Funding Amount $9,914,723	Project Count 38

Table 2 Institutions with the most autism research funding from federal and private sources in 2019 and 2020.

Which states had the highest levels of funding in 2019 and 2020?

2019			2020
State	Funding Amount	Number of Projects	State	Funding Amount	Number of Projects
Institution California	Funding Amount $93,953,199	Project Count 301	Institution California	Funding Amount $95,052,698	Project Count 287
Institution New York	Funding Amount $42,457,087	Project Count 137	Institution New York	Funding Amount $41,899,517	Project Count 148
Institution Massachusetts	Funding Amount $38,355,616	Project Count 244	Institution Maryland	Funding Amount $32,372,192	Project Count 54
Institution Maryland	Funding Amount $29,964,749	Project Count 47	Institution Massachusetts	Funding Amount $32,344,358	Project Count 221
Institution Pennsylvania	Funding Amount $25,336,307	Project Count 99	Institution Pennsylvania	Funding Amount $25,923,058	Project Count 105
Institution Connecticut	Funding Amount $21,266,559	Project Count 67	Institution Connecticut	Funding Amount $24,514,654	Project Count 66
Institution North Carolina	Funding Amount $19,059,491	Project Count 69	Institution North Carolina	Funding Amount $18,360,721	Project Count 66
Institution Tennessee	Funding Amount $13,585,462	Project Count 47	Institution Georgia	Funding Amount $12,475,254	Project Count 44
Institution Georgia	Funding Amount $11,663,448	Project Count 46	Institution Tennessee	Funding Amount $12,145,086	Project Count 41
Institution New Jersey	Funding Amount $9,281,096	Project Count 21	Institution Missouri	Funding Amount $11,605,126	Project Count 35

Table 3 States with the most autism research funding from federal and private sources in 2019 and 2020.

Which countries received autism research funding from U.S. funders?

While the majority of U.S. autism research funding is awarded to investigators at U.S. institutions, several of the funding agencies and organizations invest in autism research internationally. International research was supported by private organizations and the National Institutes of Health and Department of Defense – Army (Table 4).

In 2019, researchers in 19 countries outside the United States received support for autism research from U.S. agencies and organizations included in the portfolio analysis, with funding for 79 international projects amounting to $12.4 million (Table 5). This accounts for 2.9% of total 2019 funding, and 4.9% of all projects were conducted at international institutions. The countries that received the largest portion of international funding in 2019 were the United Kingdom and Canada.

In 2020, researchers in 18 countries outside the United States received support for autism research, with funding for 65 projects amounting to $11.2 million (Table 5). In 2020, 2.7% of total funding went towards institutions outside of the United States, and 4.1% of all projects were conducted at international institutions. As in 2019, the countries that received the largest portion of international funding in 2020 were the United Kingdom and Canada.

Funder Autism Research Institute	Funder Escher Fund for Autism/Escher Family Fund
Funder Autism Speaks	Funder FRAXA Research Foundation
Funder Autism Science Foundation	Funder New England Center for Children
Funder Brain & Behavior Research Foundation	Funder National Institutes of Health
Funder Department of Defense - Army	Funder Simons Foundation

Table 4. U.S. funders of international autism research in 2019 and/or 2020.

Countries Receiving U.S. Funding for Autism Research in 2019 and 2020

Country	2019		2020
	Funding Amount	Number of Projects	Funding Amount	Number of Projects
Country Australia	Funding Amount $335,581	Project Count 6	Funding Amount $392,190	Project Count 2
Country Austria	Funding Amount $0	Project Count 1	Funding Amount $143,873	Project Count 1
Country Belgium	Funding Amount $55,800	Project Count 1	Funding Amount $0	Project Count 1
Country Canada	Funding Amount $4,228,595	Project Count 26	Funding Amount $3,536,508	Project Count 27
Country Finland	Funding Amount $20,000	Project Count 1	Funding Amount $45,000	Project Count 1
Country France	Funding Amount $151,764	Project Count 5	Funding Amount $78,760	Project Count 1
Country Germany	Funding Amount $0	Project Count 0	Funding Amount $35,000	Project Count 1
Country Hong Kong	Funding Amount $240,000	Project Count 1	Funding Amount $120,000	Project Count 1
Country Ireland	Funding Amount $17,500	Project Count 3	Funding Amount $0	Project Count 0
Country Israel	Funding Amount $295,800	Project Count 2	Funding Amount $214,020	Project Count 2
Country Italy	Funding Amount $323,340	Project Count 7	Funding Amount $264,640	Project Count 7
Country Kenya	Funding Amount $50,000	Project Count 1	Funding Amount $8,380	Project Count 1
Country Netherlands	Funding Amount $302,947	Project Count 3	Funding Amount $283,378	Project Count 2
Country Qatar	Funding Amount $15,000	Project Count 1	Funding Amount $0	Project Count 1
Country Spain	Funding Amount $0	Project Count 1	Funding Amount $0	Project Count 0
Country Sweden	Funding Amount $35,000	Project Count 1	Funding Amount $0	Project Count 1
Country Switzerland	Funding Amount $302,025	Project Count 6	Funding Amount $102,500	Project Count 5
Country Turkey	Funding Amount $68,200	Project Count 1	Funding Amount $68,200	Project Count 1
Country United Arab Emirates	Funding Amount $2,250	Project Count 1	Funding Amount $2,250	Project Count 1
Country United Kingdom	Funding Amount $5,978,784	Project Count 11	Funding Amount $5,955,160	Project Count 9
Country Total	Funding Amount $12,422,585	Project Count 79	Funding Amount $11,249,858	Project Count 65

Table 5. Countries outside of the United States that received funding from U.S. federal agencies or private organizations to support autism research in 2019 and 2020.

How much autism research funding did each funder provide in 2019?

In 2019, the agencies and organizations that participated in the portfolio analysis supported 1,604 autism research projects totaling $424,202,347 (Table 6). The National Institutes of Health was the leading federal (and overall) funder of autism research in 2019 with a total of $288.1 million (617 projects). The next largest federal funder was the National Science Foundation, with $19.8 million (45 projects), followed by the Centers for Disease Control and Prevention, with $13.5 million (27 projects). The Simons Foundation and Autism Speaks were the largest private funders of autism research in 2019, with investments of $62.5 million (369 projects) and $4.3 million (51 projects), respectively. The percent of overall autism research investment provided by each funder in 2019 is depicted in Figure 9.

2019 Autism Research Funding by Agency/Organization

Funding Agency/Organization	Funding Amount	Number of Projects
Funding Agency/Organization National Institutes of Health (NIH)*	Funding Amount $288,063,533	Project Count 617
Funding Agency/Organization Simons Foundation (SF)	Funding Amount $62,489,357	Project Count 369
Funding Agency/Organization National Science Foundation (NSF)	Funding Amount $19,801,919	Project Count 45
Funding Agency/Organization Centers for Disease Control and Prevention (CDC)	Funding Amount $13,545,901	Project Count 27
Funding Agency/Organization Department of Defense – Army (DoD-Army)	Funding Amount $9,862,348	Project Count 51
Funding Agency/Organization Health Resources and Services Administration (HRSA)**	Funding Amount $7,534,804	Project Count 42
Funding Agency/Organization Department of Education (ED)	Funding Amount $7,347,603	Project Count 101
Funding Agency/Organization Autism Speaks (AS)	Funding Amount $4,335,366	Project Count 51
Funding Agency/Organization Administration for Community Living (ACL)	Funding Amount $2,574,814	Project Count 11
Funding Agency/Organization New Jersey Governor’s Council for Medical Research and Treatment of Autism (NJGCA)	Funding Amount $2,200,000	Project Count 5
Funding Agency/Organization Brain & Behavior Research Foundation (BBRF)	Funding Amount $1,502,723	Project Count 71
Funding Agency/Organization Eagles Autism Foundation (Eagles)	Funding Amount $1,280,322	Project Count 8
Funding Agency/Organization Defense Advanced Research Projects Agency (DARPA)	Funding Amount $583,749	Project Count 1
Funding Agency/Organization Agency for Healthcare Research and Quality (AHRQ)	Funding Amount $526,082	Project Count 3
Funding Agency/Organization FRAXA Research Foundation (FRAXA)	Funding Amount $500,000	Project Count 18
Funding Agency/Organization Patient-Centered Outcomes Research Institute (PCORI)	Funding Amount $487,962	Project Count 7
Funding Agency/Organization Els for Autism Foundation (ELS)	Funding Amount $364,036	Project Count 7
Funding Agency/Organization New England Center for Children (NECC)	Funding Amount $311,150	Project Count 94
Funding Agency/Organization Autism Science Foundation (ASF)	Funding Amount $227,000	Project Count 28
Funding Agency/Organization Organization for Autism Research (OAR)	Funding Amount $197,292	Project Count 18
Funding Agency/Organization Tuberous Sclerosis Alliance (TSCA)	Funding Amount $178,424	Project Count 4
Funding Agency/Organization Autism Research Institute (ARI)	Funding Amount $170,200	Project Count 13
Funding Agency/Organization Escher Fund for Autism/Escher Family Fund (EFA)	Funding Amount $55,000	Project Count 3
Funding Agency/Organization Thrasher Research Fund (Thrasher)	Funding Amount $27,762	Project Count 5
Funding Agency/Organization Institute of Museum and Library Services (IMLS)	Funding Amount $25,000	Project Count 2
Funding Agency/Organization Social Security Administration (SSA)	Funding Amount $10,000	Project Count 1
Funding Agency/Organization Environmental Protection Agency (EPA)	Funding Amount $0	Project Count 1
Funding Agency/Organization National Endowment for the Arts (NEA)	Funding Amount $0	Project Count 1
Funding Agency/Organization Total	Funding Amount $424,202,347	Project Count 1,604

*NIH autism projects included in the present IACC Portfolio Analysis Report may differ from the projects listed in the "autism" spending category of NIH’s Research, Condition, and Disease Categorization (RCDC) system. While the RCDC list of autism projects informed the projects included in the present report, variations may exist due to differences in inclusion criteria. Additionally, the NIH project number shown reflects unique NIH projects. Portions of a project funded by more than one NIH institute ("co-funds") were combined and only counted as a single project. This approach differs from that used in the NIH RePORT database, where each co-fund portion is counted as a separate project.
**The annual funding amount for some projects reported by HRSA are prorated estimates for the autism-related portion of a larger project.

Table 6. Total funding and number of projects provided by federal agencies and private organizations included in the portfolio analysis for 2019. Together, the agencies and organizations funded 1,604 projects, representing an overall investment of $424.2 million.

Figure 9. Percent of total autism research funding contributed by federal agencies and private organizations in 2019. The National Institutes of Health provided the largest proportion of funding (67.9%), while the Simons Foundation provided the largest private investment (14.7%).

How much autism research funding did each funder provide in 2020?

In 2020, the agencies and organizations that participated in the portfolio analysis supported 1,573 autism research projects totaling $418,915,385 (Table 7). The National Institutes of Health continued to lead federal and overall autism research funding in 2020, with a total of $285.5 million (598 projects). The next largest federal funder was the Centers for Disease Control and Prevention, with $14.1 million (19 projects), followed by the Department of Defense – Army, with $14.0 million (59 projects). The Simons Foundation and Autism Speaks were the largest private funders of autism research in 2020, with investments of $56.1 million (354 projects) and $7.1 million (83 projects), respectively. The percent of overall autism research investment provided by each funder in 2020 is depicted in Figure 10.

Funding Agency/Organization	Funding Amount	Number of Projects
Funding Agency/Organization National Institutes of Health (NIH)*	Funding Amount $285,474,136	Project Count 598
Funding Agency/Organization Simons Foundation (SF)	Funding Amount $56,085,170	Project Count 354
Funding Agency/Organization Centers for Disease Control and Prevention (CDC)	Funding Amount $14,143,700	Project Count 19
Funding Agency/Organization Department of Defense – Army (DoD-Army)	Funding Amount $14,002,309	Project Count 59
Funding Agency/Organization Department of Education (ED)	Funding Amount $11,501,480	Project Count 92
Funding Agency/Organization National Science Foundation (NSF)	Funding Amount $9,549,918	Project Count 50
Funding Agency/Organization Autism Speaks (AS)	Funding Amount $7,092,198	Project Count 83
Funding Agency/Organization Health Resources and Services Administration (HRSA)**	2018 Funding $6,942,278	Project Count 50
Funding Agency/Organization Eagles Autism Foundation (Eagles)	Funding Amount $2,951,505	Project Count 18
Funding Agency/Organization Administration for Community Living (ACL)	Funding Amount $2,744,441	Project Count 12
Funding Agency/Organization Patient-Centered Outcomes Research Institute (PCORI)	Funding Amount $2,604,364	Project Count 6
Funding Agency/Organization Brain & Behavior Research Foundation (BBRF)	Funding Amount $1,028,000	Project Count 49
Funding Agency/Organization BRAIN Foundation (BRAIN)	Funding Amount $930,000	Project Count 8
Funding Agency/Organization New Jersey Governor’s Council for Medical Research and Treatment of Autism (NJGCA)	Funding Amount $800,000	Project Count 5
Funding Agency/Organization Agency for Healthcare Research and Quality (AHRQ)	2018 Funding $598,119	Project Count 2
Funding Agency/Organization FRAXA Research Foundation (FRAXA)	Funding Amount $480,000	Project Count 11
Funding Agency/Organization Institute of Museum and Library Services (IMLS)	Funding Amount $476,568	Project Count 3
Funding Agency/Organization New England Center for Children (NECC)	Funding Amount $301,816	Project Count 84
Funding Agency/Organization Autism Research Institute (ARI)	Funding Amount $263,850	Project Count 14
Funding Agency/Organization Food and Drug Administration (FDA)	Funding Amount $249,430	Project Count 1
Funding Agency/Organization Organization for Autism Research (OAR)	Funding Amount $159,991	Project Count 17
Funding Agency/Organization National Endowment for the Arts (NEA)	Funding Amount $149,943	Project Count 2
Funding Agency/Organization Els for Autism Foundation (ELS)	Funding Amount $149,435	Project Count 7
Funding Agency/Organization Tuberous Sclerosis Alliance (TSCA)	Funding Amount $113,659	Project Count 3
Funding Agency/Organization Autism Science Foundation (ASF)	Funding Amount $59,000	Project Count 19
Funding Agency/Organization Escher Fund for Autism/Escher Family Fund (EFA)	Funding Amount $30,000	Project Count 2
Funding Agency/Organization Thrasher Research Fund (Thrasher)	Funding Amount $24,075	Project Count 2
Funding Agency/Organization Social Security Administration (SSA)	Funding Amount $10,000	Project Count 2
Funding Agency/Organization Defense Advanced Research Projects Agency (DARPA)	Funding Amount $0	Project Count 1
Funding Agency/Organization Total	Funding Amount $418,915,385	Project Count 1,573

*NIH autism projects included in the present IACC Portfolio Analysis Report may differ from the projects listed in the "autism" spending category of NIH’s Research, Condition, and Disease Categorization (RCDC) system. While the RCDC list of autism projects informed the projects included in the present report, variations may exist due to differences in inclusion criteria. Additionally, the NIH project number shown reflects unique NIH projects. Portions of a project funded by more than one NIH institute ("co-funds") were combined and only counted as a single project. This approach differs from that used in the NIH RePORT database, where each co-fund portion is counted as a separate project.
**The annual funding amount for some projects reported by HRSA are prorated estimates for the autism-related portion of a larger project.

Table 7. Funding and number of projects provided by federal agencies and private organizations included in the portfolio analysis for 2020. Together, the agencies and organizations funded 1,573 projects, reflecting an overall investment of $418.9 million.

Figure 10. Percent of total autism research funding contributed by federal agencies and private organizations in 2020. The National Institutes of Health provided the largest proportion of funding (68.1%), while the Simons Foundation provided the largest private investment (13.4%).

Summary of Autism Research Funding in 2019 and 2020

The 2016-2017 IACC Strategic Plan called for a doubling of the 2015 autism research budget to $685 million by 2020. To accomplish this goal, the IACC recommended a nearly 15% annual increase in autism research funding across combined federal and private funders. The Committee recognized this was an ambitious goal but believed that such an increase could also have a significant impact if achieved. Since the 2016 Portfolio Analysis Report, funding for autism research increased from $364.4 million in 2016 to $424.2 million in 2019, reflecting a 16.4% ($59.8 million) increase. From 2019 to 2020 ($418.9 million), autism funding decreased by 1.2% ($5.3 million). In comparison to 2016, however, 2020 funding reflects an increase of 14.9% ($54.5 million). While this did not meet the 2016-2017 IACC Strategic Plan recommended yearly 15% increase, which would have resulted in an estimated funding amount of $685 million in 2020, autism research did experience a substantial growth in funding during this period (Figure 11). The addition of newly established funders to the portfolio such as the Eagles Autism Foundation and the BRAIN Foundation indicates that autism continues to be an area of research attention and growth.

Future Portfolio Analysis Reports will continue to closely monitor funding in support of autism research, as well as track growth in high-priority areas as identified by the IACC. As described in the Budget Recommendation of the new 2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy, the Committee has called for increased funding for research on lifespan issues (e.g., transition to adulthood, higher education, employment, housing, health care, lifelong learning, community integration, and healthy aging), evidence-based interventions and services, and disparities and the development of culturally responsive tools and services. While all aspects of the autism research portfolio require increases in funding, these are just a few of the areas identified by the IACC that are in particular need of resource growth. The new Strategic Plan also highlights priorities for supporting autistic individuals across the spectrum, including those with the highest support needs, and across the lifespan, including older adulthood, as well as ways to improve mental and physical health; increase accessibility of services, interventions, and research; and greater acceptance and inclusion of autistic individuals. These topics are further discussed in the 2021-2023 IACC Strategic Plan.

Figure 11. The IACC recommended a doubling of the combined federal and private autism research budget to $685 million by 2020 in the 2016-2017 IACC Strategic Plan. Based on 2019 and 2020 funding amounts, autism research investment is increasing but did not meet the IACC Budget Recommendation.