ASD Research Funders and Funding in 2017 and 2018

Who funded ASD research in 2017 and 2018?

Nine federal agencies and fourteen private funders provided their autism research funding information for the 2017-2018 ASD Research Portfolio Analysis Report. These 23 agencies and organizations are listed in Table 1. The IACC and OARC routinely review the funding landscape and offer opportunities to new funders to join the IACC portfolio analysis effort in order to provide a more comprehensive depiction of federal and private contributions to ASD research in the U.S. For the present report, five new private organizations were identified and added to the analysis. These new additions are as follows: the Escher Fund for Autism/Escher Family Fund, the FRAXA Research Foundation, the Geisinger Autism & Developmental Medicine Institute, the New Jersey Governor’s Council for Medical Research and Treatment of Autism, and the Tuberous Sclerosis Alliance. Within the portfolios of funders who focus on rare genetic disorders with strong links to autism, only projects that directly study aspects of autism were counted as autism projects and included in the present report analyses. The five new funders contributed 1.5% ($5.6 million) and 0.44% ($1.75 million) of total funding in 2017 and 2018, respectively. The research projects that are included by these new funders are important in understanding the ASD research landscape but do not dramatically change the portfolio’s trends. Some agencies and organizations included in previous years’ analyses did not have projects to report in 2017 or 2018 or chose not to participate in the present analysis. Brief summaries of the mission areas for each agency and organization that contributed to the 2017-2018 Portfolio Analysis can be found in Appendix A of this report.

Federal Agencies

Private Organizations

Federal Agencies Administration for Community Living (ACL) Agency for Healthcare Research and Quality (AHRQ) Centers for Disease Control and Prevention (CDC) Department of Defense – Army (DoD – Army) Department of Education (ED) Environmental Protection Agency (EPA) Health Resources and Services Administration (HRSA) National Institutes of Health (NIH) National Science Foundation (NSF)

Private Organizations Autism Research Institute (ARI) Autism Science Foundation (ASF) Autism Speaks (AS) Brain & Behavior Research Foundation (BBRF) Center for Autism and Related Disorders (CARD) Escher Fund for Autism/Escher Family Fund (EFA) FRAXA Research Foundation (FRAXA) Geisinger Autism & Developmental Medicine Institute (GADMI) New England Center for Children (NECC) Organization for Autism Research (OAR) Patient-Centered Outcomes Research Institute (PCORI) Simons Foundation (SF) The New Jersey Governor’s Council for Medical Research and Treatment of Autism (NJMRTA) Tuberous Sclerosis Alliance (TSA)

Table 1. Projects from nine federal agencies and fourteen private organizations were included in the 2017-2018 IACC ASD Research Portfolio Analysis Report.

How much ASD research was funded in 2017 and 2018?

Combined, the estimated federal and private investment in ASD research was $381,876,434 in 2017 and $394,212,761 in 2018. Overall funding for autism research increased by $17.4 million from 2016 to 2017 and by $12.3 million from 2017 to 2018. The addition of the five new private funders to the portfolio analysis accounted for 32% ($5.6 million) of the increase from 2016 to 2017 and 14% ($1.75 million) of the increase from 2017 to 2018. Without including the contributions of the five new funders, the funding increase from 2016 to 2017 was $11.8 million, and the increase from 2017 to 2018 was $10.6 million.

The relative proportions contributed by federal and private funders during this period remained relatively unchanged from year to year. In 2017, the federal government provided $307.8 million in ASD research funding and accounted for 81% of overall funding. Private organizations provided $74.1 million in funding, which accounted for 19% of the total funding in 2017 (Figure 3). In 2018, the federal government provided $326.9 million in ASD research funding and accounted for 83% of overall funding. Private organizations provided $67.4 million, which accounted for 17% of the total funding in 2018 (Figure 4).

Figure 3. In 2017, 81% of ASD research was provided by federal sources, while 19% of funding was provided by private organizations.

Figure 4. In 2018, 83% of ASD research was provided by federal sources, while 17% of funding was provided by private organizations.

What funding trends were observed?

• ASD research funding increased from 2016 to 2018. In 2016, combined federal and private investment in ASD research was $364.4 million. In 2017, the combined federal and private funding was $381.9 million, an increase of 4.8% from the previous year. In 2018, the combined federal and private funding was $394.2 million, an increase of 3.2% from 2017 (Figure 5). The addition of five new private funders to the Portfolio Analysis Report accounted for a portion of these yearly increases but not all (see previous section for details).
• The amount of federal investment in ASD research increased 5.5% in 2017 ($307.8 million) from 2016 ($291.7 million). It increased 6.2% in 2018 ($326.9 million) from 2017.
• The amount of private investment in ASD research increased 2% in 2017 ($74.1 million) from 2016 ($72.7 million). It decreased 9.1% in 2018 (67.4 million) from 2017.
• As stated in previous IACC Portfolio Analysis Reports, the American Recovery and Reinvestment Act (ARRA), which provided an additional $63.9 million in 2009 and $59.9 million in 2010 to support autism research projects, created a temporary increase in total autism research funding levels during those years, resulting in a high of $408.6 million in reported funding in 2010. In 2011, levels significantly decreased in comparison to 2010 but have been slowly increasing in recent years.

Figure 5. This figure illustrates levels of autism research funding from combined federal and private sources during 2008-2018 based on data collected for the IACC Portfolio Analysis of those years.

Where is research being funded in the U.S.?

Figure 6 shows the distribution of autism research projects across the U.S. funded by both federal agencies and private organizations in 2018. The map shows that research is concentrated along the east and west coasts of the U.S. 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 2017 are Yale University and the University of California, Davis. In 2018, in addition to Yale University, the University of California, San Francisco was a top funded institution. The University of California, Davis has many investigators collaborating on major 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 new 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. The University of California, San Francisco includes researchers also involved in the SSC and the Autism Sequencing Consortium (ASC), two major research initiatives investigating the genetic composition of ASD.

Many of the other institutions with significant amounts of funding are involved in large genetic, biological, and environmental research networks in an effort 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 had the largest number of projects in 2017 and 2018.

Figure 6. A map of the United States displaying the geographic distribution of autism-related research projects in 2018 funded by federal agencies and private organizations.

Which U.S. institutions had the highest levels of funding in 2017 and 2018?

Institution	Funding Amount	Project Count
Institution Yale University	Funding Amount $23,213,557	Project Count 53
Institution University of California, Davis	Funding Amount $20,790,859	Project Count 61
Institution University of California, Los Angeles	Funding Amount $12,949,918	Project Count 42
Institution University of California, San Diego	Funding Amount $12,282,101	Project Count 35
Institution University of North Carolina, Chapel Hill	Funding Amount $10,193,081	Project Count 33
Institution National Institutes of Health - Intramural	Funding Amount $9,263,100	Project Count 12
Institution University of Rochester	Funding Amount $8,801,038	Project Count 11
Institution Stanford University	Funding Amount $8,614,935	Project Count 31
Institution Drexel University	Funding Amount $7,329,527	Project Count 20
Institution Vanderbilt University	Funding Amount $7,233,063	Project Count 45

Institution	Funding Amount	Project Count
Institution University of California, San Francisco	Funding Amount $23,532,985	Project Count 84
Institution Yale University	Funding Amount $22,653,002	Project Count 61
Institution University of California, Davis	Funding Amount $18,774,068	Project Count 55
Institution University of California, San Diego	Funding Amount $14,183,592	Project Count 34
Institution University of California, Los Angeles	Funding Amount $12,665,795	Project Count 42
Institution University of North Carolina, Chapel Hill	Funding Amount $10,193,081	Project Count 33
Institution National Institutes of Health - Intramural	Funding Amount $9,886,842	Project Count 9
Institution Stanford University	Funding Amount $9,726,935	Project Count 31
Institution Drexel University	Funding Amount $8,086,635	Project Count 20
Institution Washington University, St. Louis	Funding Amount $7,435,650	Project Count 23
Institution Massachusetts General Hospital	Funding Amount $7,350,538	Project Count 20

Table 2 Institutions with the most ASD-related research funding from federal and private sources in 2017 and 2018.

Which states had the highest levels of funding in 2017 and 2018?

Institution	Funding Amount	Project Count
Institution California	Funding Amount $80,062,765	Project Count 291
Institution New York	Funding Amount $43,512,924	Project Count 142
Institution Massachusetts	Funding Amount $38,357,051	Project Count 229
Institution Maryland	Funding Amount $29,190,996	Project Count 58
Institution Connecticut	Funding Amount $23,291,057	Project Count 57
Institution Pennsylvania	Funding Amount $21,617,332	Project Count 87
Institution North Carolina	Funding Amount $16,998,820	Project Count 64
Institution Georgia	Funding Amount $10,417,396	Project Count 44
Institution Florida	Funding Amount $9,052,043	Project Count 33
Institution Tennessee	Funding Amount $7,776,659	Project Count 47

Institution	Funding Amount	Project Count
Institution California	Funding Amount $83,499,573	Project Count 282
Institution Massachusetts	Funding Amount $39,111,089	Project Count 231
Institution New York	Funding Amount $38,503,289	Project Count 145
Institution Maryland	Funding Amount $28,936,874	Project Count 45
Institution Connecticut	Funding Amount $24,098,417	Project Count 67
Institution Pennsylvania	Funding Amount $22,113,779	Project Count 89
Institution North Carolina	Funding Amount $16,740,739	Project Count 61
Institution Florida	Funding Amount $10,354,383	Project Count 39
Institution Georgia	Funding Amount $9,916,057	Project Count 42
Institution Washington	Funding Amount $9,177,308	Project Count 33

Table 3. States with the most ASD-related research funding from federal and private sources in 2017 and 2018.

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

While the majority of U.S. ASD research funding is awarded to investigators at U.S. institutions, several of the agencies and organizations from which the IACC/OARC collects information invest in ASD research internationally. While a few federal agencies funded projects at international institutions, most of the international research was supported by private organizations (Table 4). In 2017, 20 countries outside the U.S. received support for ASD research from U.S. agencies and organizations represented in the Portfolio Analysis, with total funding of international projects amounting to $9.3 million and 72 projects (Table 5). Overall in 2017, 2.4% of total funding went towards institutions outside of the U.S., and 4.8% of all projects were at international institutions. The countries that received the largest portion of international funding in 2017 were the United Kingdom and Canada.

In 2018, 17 countries outside the U.S. received support for ASD research from agencies and organizations represented in the Portfolio Analysis, with total funding of international projects amounting to $11.8 million and 75 projects (Table 5). Overall in 2018, 3% of total funding went towards institutions outside of the U.S., and 4.9% of all projects were at international institutions. As in previous years, most of this international research was supported by private organizations. As in 2017, the countries that received the largest portion of international funding in 2018 were Canada and the United Kingdom.

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

Table 4. List of U.S. funders of international ASD research in 2017 and 2018.

Country	2017 Funding Amount	2017 Project Count	2018 Funding Amount	2018 Project Count
Country Australia	2017 Funding Amount $216,833	2017 Project Count 5	2018 Funding Amount $199,649	2018 Project Count 5
Country Austria	2017 Funding Amount $99,559	2017 Project Count 1	2018 Funding Amount $99,789	2018 Project Count 1
Country Belgium	2017 Funding Amount $151,600	2017 Project Count 2	2018 Funding Amount $0	2018 Project Count 1
Country Canada	2017 Funding Amount $3,344,472	2017 Project Count 25	2018 Funding Amount $4,114,706	2018 Project Count 26
Country France	2017 Funding Amount $250,000	2017 Project Count 6	2018 Funding Amount $394,433	2018 Project Count 8
Country Germany	2017 Funding Amount $0	2017 Project Count 1	2018 Funding Amount $0	2018 Project Count 0
Country Hong Kong	2017 Funding Amount $120,000	2017 Project Count 1	2018 Funding Amount $240,000	2018 Project Count 1
Country Ireland	2017 Funding Amount $290,750	2017 Project Count 3	2018 Funding Amount $217,700	2018 Project Count 3
Country Israel	2017 Funding Amount $91,997	2017 Project Count 2	2018 Funding Amount $0	2018 Project Count 3
Country Italy	2017 Funding Amount $150,504	2017 Project Count 2	2018 Funding Amount $208,068	2018 Project Count 5
Country Netherlands	2017 Funding Amount $17,500	2017 Project Count 2	2018 Funding Amount $88,796	2018 Project Count 4
Country Portugal	2017 Funding Amount $5,000	2017 Project Count 2	2018 Funding Amount $0	2018 Project Count 0
Country Pakistan	2017 Funding Amount $0	2017 Project Count 1	2018 Funding Amount $0	2018 Project Count 0
Country Singapore	2017 Funding Amount $67,500	2017 Project Count 1	2018 Funding Amount $0	2018 Project Count 1
Country Spain	2017 Funding Amount $16,079	2017 Project Count 1	2018 Funding Amount $16,079	2018 Project Count 1
Country Sweden	2017 Funding Amount $0	2017 Project Count 0	2018 Funding Amount $35,000	2018 Project Count 1
Country Switzerland	2017 Funding Amount $34,892	2017 Project Count 1	2018 Funding Amount $149,525	2018 Project Count 2
Country Taiwan	2017 Funding Amount $0	2017 Project Count 1	2018 Funding Amount $0	2018 Project Count 0
Country Turkey	2017 Funding Amount $0	2017 Project Count 1	2018 Funding Amount $0	2018 Project Count 1
Country United Arab Emirates	2017 Funding Amount $2,100	2017 Project Count 1	2018 Funding Amount $2,200	2018 Project Count 1
Country United Kingdom	2017 Funding Amount $4,362,001	2017 Project Count 13	2018 Funding Amount $6,026,179	2018 Project Count 11
Country Total	2017 Funding Amount $9,265,786	2017 Project Count 72	2018 Funding Amount $11,792,123	2018 Project Count 75

Table 5. Countries outside of the U.S. that received funding from U.S. federal agencies or private organizations to support ASD research in 2017 and 2018.

How much ASD research funding did each funder provide in 2017?

In 2017, the 23 agencies and organizations that participated in the portfolio analysis supported 1,508 ASD research projects, totaling $381,876,434 (Table 6). The National Institutes of Health (NIH) was the leading federal (and overall) funder of ASD research in 2017 with a total of $249.6 million, funding 551 projects. NIH funding for autism research increased by $15.2 million from 2016 to 2017. The next largest federal funder was the Department of Education (ED), with $17.4 million, followed by the Centers for Disease Control and Prevention (CDC), with $15.3 million. ED’s research funding decreased slightly from 2016, by $2.2 million. The CDC’s funding stayed relatively constant from 2016 to 2017. As in previous years, the Simons Foundation (SF) and Autism Speaks (AS) were the largest private funders of ASD research in 2017, with investments of $55.3 million and $9 million, respectively. The percentage of overall ASD research funding provided by each agency and organization in 2017 is depicted in Figure 7.

Funding Agency/Organization	2017 Funding	Project Count
Funding Agency/Organization National Institutes of Health (NIH)	2017 Funding $249,564,078	Project Count 551*
Funding Agency/Organization Simons Foundation (SF)	2017 Funding $55,319,669	Project Count 308
Funding Agency/Organization Department of Education (ED)	2017 Funding $17,380,036	Project Count 84
Funding Agency/Organization Centers for Disease Control and Prevention (CDC)	2017 Funding $15,337,228	Project Count 28
Funding Agency/Organization Department of Defense - Army (DoD-Army)	2017 Funding $13,648,386	Project Count 41
Funding Agency/Organization Autism Speaks (AS)	2017 Funding $8,997,408	Project Count 84
Funding Agency/Organization Health Resources and Services Administration (HRSA)	2017 Funding $7,714,518**	Project Count 52
Funding Agency/Organization The NJ Governor's Council for Medical Research and Treatment of Autism (NJMRTA)	2017 Funding $2,798,035	Project Count 7
Funding Agency/Organization FRAXA Research Foundation (FRAXA)	2017 Funding $2,303,714	Project Count 23
Funding Agency/Organization National Science Foundation (NSF)	2017 Funding $1,926,563	Project Count 39
Funding Agency/Organization Brain & Behavior Research Foundation (BBRF)	2017 Funding $1,693,792	Project Count 80
Funding Agency/Organization Administration for Community Living (ACL)	2017 Funding $1,122,986	Project Count 3
Funding Agency/Organization Autism Science Foundation (ASF)	2017 Funding $905,373	Project Count 50
Funding Agency/Organization Center for Autism and Related Disorders (CARD)	2017 Funding $765,000	Project Count 10
Funding Agency/Organization Environmental Protection Agency (EPA)	2017 Funding $764,214	Project Count 1
Funding Agency/Organization New England Center for Children (NECC)	2017 Funding $301,540	Project Count 86
Funding Agency/Organization Agency for Healthcare Research and Quality (AHRQ)	2017 Funding $292,404	Project Count 4
Funding Agency/Organization Tuberous Sclerosis Alliance (TSA)	2017 Funding $231,818	Project Count 4
Funding Agency/Organization Geisinger Autism & Developmental Medicine Institute (GADMI)	2017 Funding $222,858	Project Count 4
Funding Agency/Organization Autism Research Institute (ARI)	2017 Funding $220,517	Project Count 17
Funding Agency/Organization Organization for Autism Research (OAR)	2017 Funding $189,301	Project Count 19
Funding Agency/Organization Patient-Centered Outcomes Research Institute (PCORI)	2017 Funding $124,997	Project Count 9
Funding Agency/Organization Escher Fund for Autism/Escher Family Fund (EFA)	2017 Funding $52,000	Project Count 4
Funding Agency/Organization Grand Total	2017 Funding $381,876,434	Project Count 1,508

*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. The table lists the total funding and number of projects provided by the 23 federal agencies and private organizations included in the portfolio analysis for 2017. Together, the agencies and organizations funded 1,508 projects, representing an overall investment of $382 million.

Figure 7. Percentage of total ASD research funding contributed by the 23 federal agencies and private organizations included in the 2017 portfolio. NIH provided the largest proportion of funding (65%), while Simons Foundation provided the largest private investment (14.5%).

How much ASD research funding did each funder provide in 2018?

In 2018, the agencies and organizations that participated in the portfolio analysis supported 1,543 ASD research projects totaling $394,212,761 (Table 7). The National Institutes of Health (NIH) continued to lead federal and overall ASD research funding, with a total of $273.7 million, funding 621 projects. NIH funding for autism research increased by $24.1 million from 2017 to 2018. The next largest federal funder was the Department of Education (ED), with $18.6 million, followed by the Centers for Disease Control and Prevention (CDC), with $14.4 million. ED’s research funding increased by $1.2 million from 2017, while the CDC’s funding stayed relatively the same. As in previous years, the Simons Foundation (SF) and Autism Speaks (AS) were the largest private funders of ASD research in 2018, with investments of $57.6 million and $5.7 million, respectively. SF increased ASD research funding by $2.3 million from 2017, and AS saw a decrease of $3 million. The percentage of overall ASD research funding provided by each agency and organization in 2018 is depicted in Figure 8.

Funding Agency/Organization	2018 Funding	Project Count
Funding Agency/Organization National Institutes of Health (NIH)	2018 Funding $273,664,260	Project Count 621
Funding Agency/Organization Simons Foundation (SF)	2018 Funding $57,638,035	Project Count 344
Funding Agency/Organization Department of Education (ED)	2018 Funding $18,613,583	Project Count 93
Funding Agency/Organization Centers for Disease Control and Prevention (CDC)	2018 Funding $14,375,460	Project Count 28
Funding Agency/Organization Health Resources and Services Administration (HRSA)	2018 Funding $7,561,591	Project Count 50
Funding Agency/Organization Department of Defense - Army (DoD-Army)	2018 Funding $6,677,362	Project Count 45
Funding Agency/Organization Autism Speaks (AS)	2018 Funding $5,696,282	Project Count 52
Funding Agency/Organization National Science Foundation (NSF)	2018 Funding $2,916,180	Project Count 39
Funding Agency/Organization Administration for Community Living (ACL)	2018 Funding $2,344,950	Project Count 9
Funding Agency/Organization Brain & Behavior Research Foundation (BBRF)	2018 Funding $811,911	Project Count 65
Funding Agency/Organization The NJ Governor's Council for Medical Research and Treatment of Autism (NJMRTA)	2018 Funding $800,000	Project Count 8
Funding Agency/Organization Agency for Healthcare Research and Quality (AHRQ)	2018 Funding $706,741	Project Count 3
Funding Agency/Organization FRAXA Research Foundation (FRAXA)	2018 Funding $665,043	Project Count 22
Funding Agency/Organization Autism Science Foundation (ASF)	2018 Funding $643,396	Project Count 34
Funding Agency/Organization Patient-Centered Outcomes Research Institute (PCORI)	2018 Funding $227,721	Project Count 10
Funding Agency/Organization New England Center for Children (NECC)	2018 Funding $223,525	Project Count 81
Funding Agency/Organization Autism Research Institute (ARI)	2018 Funding $193,157	Project Count 10
Funding Agency/Organization Organization for Autism Research (OAR)	2018 Funding $167,965	Project Count 13
Funding Agency/Organization Escher Fund for Autism/Escher Family Fund (EFA)	2018 Funding $103,500	Project Count 9
Funding Agency/Organization Tuberous Sclerosis Alliance (TSA)	2018 Funding $100,568	Project Count 3
Funding Agency/Organization Geisinger Autism & Developmental Medicine Institute (GADMI)	2018 Funding $81,532	Project Count 3
Funding Agency/Organization Environmental Protection Agency (EPA)	2018 Funding $0	Project Count 1
Funding Agency/Organization Grand Total	2018 Funding $394,212,761	Project Count 1,543

Table 7. The table lists the total funding and number of projects provided by the federal agencies and private organizations included in the portfolio analysis for 2018. Together, the agencies and organizations funded 1,543 projects, representing an overall investment of $394.2 million.

Figure 8. The figure illustrates the percentage of total ASD research funding contributed by the federal agencies and private organizations included in the 2018 portfolio. NIH provided the largest proportion of funding (69.4%), while Simons Foundation provided the largest private investment (14.6%).

Summary of ASD Research Funding in 2017 and 2018

The 2016-2017 IACC Strategic Plan calls for a doubling of the 2015 ASD research budget to $685 million by 2020. To accomplish this goal, the IACC recommended a nearly 15% annual increase in ASD research funding across combined federal and private funders. The committee recognized that this was an ambitious goal, but it 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 $394.2 million in 2018, representing a 8.2% increase in funding. While this did not meet the 2016-2017 IACC Strategic Plan recommended 15% increase, ASD research did experience a substantial growth in funding during this period (Figure 9).

From 2008-2018, funding increased by 77.4%, demonstrating a continued overall growth in support of ASD research. However, ASD funding has undergone some fluctuations from one year to the next (Figure 5). An infusion of funds from the American Recovery and Reinvestment Act (ARRA) in 2009 and 2010 took autism research funding to its highest level to date, but funding levels decreased in 2011, with gradual increases over the next few years. In 2018, the ASD research portfolio was funded at the highest level since 2010, but this was still well below the level that would be required to meet the 2016-2017 IACC Strategic Plan budget recommendation. In future years, funding trends will continue to be monitored to determine progress toward meeting the IACC’s budget recommendation.

Figure 9. The IACC recommends a doubling of the combined federal and private ASD research budget to $685 million by 2020. Based on 2017 and 2018 funding amounts, ASD research investment is increasing but is still is not at the level of the IACC budget recommendation.