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Portfolio Analysis Cover 2012
Portfolio Analysis Report
IACC Autism Spectrum Disorder Research
2011 - 2012
Who funded ASD research in 2011 and 2012?

The Office of Autism Research Coordination (OARC) requested 2011 and 2012 autism-related research project and funding information from several Federal agencies and private organizations, including the annual budget for each project and its relevance to the seven critical questions/chapters of the 2011 IACC Strategic Plan for ASD Research, illustrated below (Figure 1).

IACC Strategic Plan Questions and Corresponding Research Areas

Figure 1. The Seven IACC Strategic Plan Critical Questions and Corresponding Research Areas. An organizational chart. There is one item at the top of the organizational chart, labeled ASD research and the IACC strategic plan. There are seven items below. The first item is labeled screening and diagnosis, with the following text below: Question 1. When should I be concerned? The second item is labeled biology, with the following text below: Question 2. How can I understand what is happening? The third item is labeled Risk Factors, with the following text below: Question 3. What caused this to happen and can it be prevented? The fourth item is labeled treatments and interventions, with the following text below: Question 4. Which treatments and interventions will help? The fifth item is labeled Services, with the following text below: Question 5. Where can I turn for services? The sixth item is labeled lifespan issues, with the following text below: Question 6. What does the future hold, especially for adults? The seventh and final item is labeled: Infrastructure and Surveillance, with the following text below: Question 7. What other infrastructure and surveillance needs must be met?

Figure 1. The research areas corresponding to the seven questions of the 2011 IACC Strategic Plan for ASD Research are designated in the oval above each question.

Twelve Federal agencies and eight private funders provided their autism funding data for this analysis. These 20 agencies and organizations are listed in Table 1. Funders submitting data for the first time include: the Administration for Community Living (ACL), a component agency within HHS that was formed in 2012; the U.S. Air Force (AF); the Substance Abuse and Mental Health Services Administration (SAMHSA); and the Brain & Behavior Research Foundation (BBRF).

Agencies and Organizations Included in the 2010 IACC Portfolio Analysis

Federal Agencies Private Organizations

Federal Agencies

  • Administration for Children and Families (ACF)
  • Administration for Community Living (ACL)
  • Agency for Healthcare Research and Quality (AHRQ)
  • Centers for Disease Control and Prevention (CDC)
  • Centers for Medicare & Medicaid Services (CMS)
  • Department of Defense (DoD)*
    • Air Force (AF)
    • Autism Research Program (ARP)
  • Department of Education (ED)
  • Environmental Protection Agency (EPA)
  • Health Resources and Services Administration (HRSA)
  • National Institutes of Health (NIH)
  • National Science Foundation (NSF)
  • Substance Abuse and Mental Health Services Administration (SAMHSA)

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)
  • Organization for Autism Research (OAR)
  • Simons Foundation (SF)
  • Southwest Autism Research & Resource Center (SARRC)

* The DoD Autism Research Program and Air Force reported as two separate entities for the purpose of this Portfolio Analysis.

Table 1. Projects from 12 Federal agencies and eight private organizations were included in the 2011-2012 IACC Autism Spectrum Disorder Research Portfolio Analysis Report.

How much ASD research was funded in 2011 and 2012?

Combined, the estimated Federal and private investment in ASD research in 2011 and 2012 was $299,879,145 and $331,949,933 respectively. While overall funding for autism research increased by $32 million from 2011 to 2012, the proportions of Federal and private funding remained constant over this period. In both 2011 and 2012, the Federal government provided 78% ($233.1 million in 2011 and $260.1 million in 2012) and private organizations provided 22% ($66.8 million in 2011 and $71.8 million in 2012) of the total funding for ASD research (Figures 2 and 3).

2011 Federal vs. Private Funding for ASD Research
Total Funding: $299,879,145
Number of Projects: 1,227

In 2011, 78% of ASD research funding was provided by Federal sources, while 22% of funding was provided by private organizations.

2012 Federal vs. Private Funding for ASD Research
Total Funding: $331,949,933
Number of Projects: 1,312

In 2012, 78% of ASD research funding was provided by Federal sources, while 22% of funding was provided by private organizations.

Figure 2 & 3. In 2011 and 2012, 78% of ASD research funding was provided by Federal sources, while 22% of funding was provided by private organizations.

  • Combined Federal and private investment in ASD research decreased from 2010 ($348.6 million) to 2011 ($299.9 million) and 2012 ($331.9 million).
  • Private investment in ASD research was lower in 2011 ($66.8 million) and 2012 ($71.8 million) than in previous years (compare to $78.5 million in 2008, $77 million in 2009, and $74.1 million in 2010), possibly reflecting changes in the U.S. economy. However, there was an increase in private funding for autism research from 2011 to 2012.
  • The amount of Federal investment in autism research reported in 2011 ($233.1 million) and 2012 ($260.1 million) was lower than the amount reported in 2010 ($334.4 million).
  • One factor that may have contributed to the decrease in overall and Federal funding for ASD research from 2010 to 2011 and 2012 is the American Recovery and Reinvestment Act (ARRA), which provided an additional $63.9 million in 2009 and $59.9 million in 2010 that was used to support autism research projects, creating a temporary increase in autism research funding levels during those years (Figure 4).
  • Another factor that may have contributed to changes in overall funding levels is that adjustments were made in the reporting of funding for some ASD services research-related projects starting in 2011. Services projects in which the research component was minimal or projects that were not ASD-specific, but focused on disabilities in general, were not included. Additionally, some large services-related projects that included ASD among multiple disabilities or contained specific portions that pertain to services research were prorated in 2011 and 2012 to reflect only the portions of the projects that are directly relevant to autism research described in the IACC Strategic Plan objectives.
  • Finally, additional Federal funders were added to the 2011-2012 Portfolio Analysis, in accordance with the IACC’s goal to make the analysis as comprehensive and current as possible and to ensure it reflects the actual state of the field. It should be noted, however, that the funders added to the analysis in 2011 and 2012 contributed only a small number of projects, so the impact of these new projects on the total funding figures was relatively small.

Combined Federal and Private Autism Research Funding 2008-2012
(millions of dollars)

This figure illustrates levels of autism research funding from combined Federal and private sources during 2008-2012 based on data collected for the IACC Portfolio Analysis of those years.

Figure 4. This figure illustrates levels of autism research funding from combined Federal and private sources during 2008-2012 based on data collected for the IACC Portfolio Analysis of those years.

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

Figure 5 shows the distribution of autism research projects across the U.S. funded by both Federal agencies and private organizations in 2012. 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. Figure 6 provides some additional information about the institutions and states that received the most research funding in 2011 and 2012.

2012 ASD Research Projects in the United States of America and Canada

A map of the U.S. and Canada displaying the distribution of autism-related research projects funded by Federal agencies and private organizations.

Figure 5. A map of the U.S. and Canada displaying the distribution of autism-related research projects funded by Federal agencies and private organizations.

a

Which U.S. institutions received the most autism research funding in 2011 and 2012?

Institution 2011 Funding 2011 Project Count

Institution

National Institutes of Health-Intramural Research Program

2011 Funding

$19,983,481

2011 Project Count

15

Institution

Yale University

2011 Funding

$15,492,159

2011 Project Count

38

Institution

University of California, Davis

2011 Funding

$12,912,674

2011 Project Count

45

Institution

University of North Carolina at Chapel Hill

2011 Funding

$12,736,747

2011 Project Count

40

Institution

University of California, Los Angeles

2011 Funding

$10,879,866

2011 Project Count

35

Institution

University of California, San Diego

2011 Funding

$6,350,978

2011 Project Count

27

Institution

Stanford University

2011 Funding

$6,077,507

2011 Project Count

29

Institution

University of Washington

2011 Funding

$6,037,668

2011 Project Count

24

Institution

Vanderbilt University

2011 Funding

$5,507,610

2011 Project Count

25

Institution

Rutgers, The State University of New Jersey

2011 Funding

$5,468,663

2011 Project Count

3

Institution 2012 Funding 2012 Project Count

Institution

National Institutes of Health-Intramural Research Program

2012 Funding

$28,959,454

2012 Project Count

18

Institution

University of North Carolina at Chapel Hill

2012 Funding

$16,836,300

2012 Project Count

44

Institution

Yale University

2012 Funding

$15,404,956

2012 Project Count

49

Institution

University of California, Los Angeles

2012 Funding

$13,528,767

2012 Project Count

44

Institution

University of California, Davis

2012 Funding

$9,702,143

2012 Project Count

47

Institution

Stanford University

2012 Funding

$9,606,691

2012 Project Count

26

Institution

Massachusetts Institute of Technology

2012 Funding

$8,739,708

2012 Project Count

16

Institution

Cold Spring Harbor Laboratory

2012 Funding

$8,402,335

2012 Project Count

9

Institution

Emory University

2012 Funding

$7,724,973

2012 Project Count

31

Institution

Boston Children’s Hospital

2012 Funding

$7,489,814

2012 Project Count

21

Which states received the most autism research funding in 2011 and 2012?

State 2011 Funding 2011 Project Count 2012 Funding 2012 Project Count

State

California

2011 Funding

$55,702,245

2011 Project Count

234

2012 Funding

$59,927,726

2012 Project Count

254

State

Maryland

2011 Funding

$32,352,288

2011 Project Count

67

2012 Funding

$41,256,045

2012 Project Count

67

State

Massachusetts

2011 Funding

$25,109,363

2011 Project Count

119

2012 Funding

$34,417,099

2012 Project Count

124

State

New York

2011 Funding

$24,514,924

2011 Project Count

103

2012 Funding

$31,300,062

2012 Project Count

126

State

Connecticut

2011 Funding

$22,748,500

2011 Project Count

57

2012 Funding

$22,293,367

2012 Project Count

69

Figure 6. Institutions and states with the most ASD research funding from Federal and private sources in 2011 and 2012.

What Types of research are Funded by the Different Agencies and Organizations?

The government agencies and private organizations included in this Portfolio Analysis Report fund a wide range of autism-related research projects. Taken together, these projects span the entire scope of the IACC Strategic Plan for ASD Research, but the type of research represented in the portfolios of individual funders vary based on the mission of each individual agency or organization. Table 2 lists the agencies and organizations that funded projects in 2012 in each of the seven question areas of the IACC Strategic Plan. Figure 7 provides a graphic illustrating the breadth of the mission areas of the funding agencies and organizations included in the IACC Portfolio Analysis Report. While some agencies and organizations have broad portfolios that cover many different research areas described in the IACC Strategic Plan, others focus their efforts on a narrower range of research topics. Brief summaries of the mission areas and portfolios of the different Federal agencies and private organizations included in this analysis appear after Figure 7.

Which Organizations Funded Research in Each of the 7 Strategic Plan Question Areas? 2012

Question 1. Screening and Diagnosis
  • Administration for Children and Families
  • Agency for Healthcare Research and Quality
  • Autism Science Foundation
  • Autism Speaks
  • Brain & Behavior Research Foundation
  • Department of Defense – Autism Research Program
  • Department of Education
  • Health Resources and Services Administration
  • National Institutes of Health
  • National Science Foundation
  • Organization for Autism Research
  • Simons Foundation
  • Southwest Autism Research & Resource Center
  • Substance Abuse and Mental Health Services Administration
Question 2. Biology
  • Autism Research Institute
  • Autism Science Foundation
  • Autism Speaks
  • Brain & Behavior Research Foundation
  • Department of Defense – Air Force
  • Department of Defense – Autism Research Program
  • Health Resources and Services Administration
  • National Institutes of Health
  • National Science Foundation
  • Organization for Autism Research
  • Simons Foundation
Question 3. Risk Factors
  • Autism Research Institute
  • Autism Science Foundation
  • Autism Speaks
  • Brain & Behavior Research Foundation
  • Centers for Disease Control and Prevention
  • Department of Defense – Autism Research Program
  • Environmental Protection Agency
  • Health Resources and Services Administration
  • National Institutes of Health
  • National Science Foundation
  • Simons Foundation
Question 4. Treatments and Interventions
  • Autism Research Institute
  • Autism Science Foundation
  • Autism Speaks
  • Brain & Behavior Research Foundation
  • Center for Autism and Related Disorders
  • Department of Defense – Autism Research Program
  • Department of Education
  • Health Resources and Services Administration
  • National Institutes of Health
  • National Science Foundation
  • Organization for Autism Research
  • Simons Foundation
  • Southwest Autism Research & Resource Center
Question 5. Services
  • Administration for Community Living
  • Agency for Healthcare Research and Quality
  • Autism Science Foundation
  • Autism Speaks
  • Center for Autism and Related Disorders
  • Centers for Disease Control and Prevention
  • Department of Defense – Autism Research Program
  • Department of Education
  • Health Resources and Services Administration
  • National Institutes of Health
  • National Science Foundation
  • Organization for Autism Research
  • Southwest Autism Research & Resource Center
Question 6. Lifespan Issues
  • Autism Science Foundation
  • Autism Speaks
  • Department of Defense – Autism Research Program
  • Department of Education
  • Health Resources and Services Administration
  • National Institutes of Health
  • National Science Foundation
  • Organization for Autism Research
  • Southwest Autism Research & Resource Center
Question 7. Infrastructure and Surveillance
  • Autism Science Foundation
  • Autism Speaks
  • Centers for Disease Control and Prevention
  • Centers for Medicare & Medicaid Services
  • Department of Defense – Air Force
  • Department of Education
  • Health Resources and Services Administration
  • National Institutes of Health
  • Simons Foundation

Table 2. A list of each Federal agency and private organization in the Portfolio Analysis organized by IACC Strategic Plan question for 2012.

Areas Covered by ASD Funder Portfolio
Percent of Total ASD Funding Dollars by Question and Organization 2012

Figure showing percentages of Total ASD Funding Dollars by Questions and Organizations

Figure 7. The portfolio of each Federal agency and private organization’s autism-related projects by Strategic Plan question for 2012. Please note that this figure is based on funding amount from 2012. Thus, while funders may support additional areas of research, that may not be reflected in this particular year. For example, AHRQ also supports studies on autism interventions, but did not provide funding for such studies in 2012.

Federal Agency and Private Organization Mission Statements

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

Administration for Children and Families (ACF)
The mission of ACF is to foster health and well-being by providing Federal leadership, partnership, and resources for the compassionate and effective delivery of human services. The ACF autism-related research portfolio includes projects focused on ensuring that effective and culturally appropriate developmental screening tools and interventions are being developed and deployed in early education settings.

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 Americans and people with disabilities across the lifespan. ACL funds the AutismNOW web resource, which provides information for the ASD 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 improve the quality, safety, efficiency, and effectiveness of health care for all Americans. Their 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 create the expertise, information, and tools that people and communities need to protect their health. This is achieved through health promotion, prevention of disease, injury and disability, and preparedness for new health threats. CDC’s autism research portfolio includes projects to collect data on ASD prevalence and risk factors, and projects to improve awareness, early detection, and intervention.

Centers for Medicare & Medicaid Services (CMS)
CMS administers the Medicare program and works in partnership with State governments to administer Medicaid, the State Children’s Health Insurance Program (SCHIP), and health insurance portability standards. CMS funds studies to evaluate ASD service provision, access, and coverage, and has commissioned several reports on state-provided services for ASD.

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. The Maternal and Child Health Bureau (MCHB) supports autism-related programs through its Combating Autism Act Initiative (CAAI), including projects to increase awareness, reduce barriers to screening and diagnosis, promote the development of guidelines for evidencebased 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 mission of NIH is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability. The NIH supports a broad range of research on ASD, including projects on the basic neuroscience of ASD, risk factors, diagnosis, intervention, and services research. One of the flagship autism programs funded by NIH, the Autism Centers of Excellence (ACE), is a collection of research centers and networks across the country that conduct research on ASD. NIH also funds interdisciplinary data repositories such as the National Database for Autism Research (NDAR) to facilitate the sharing of autism research data among scientists worldwide.

Substance Abuse and Mental Health Services Administration (SAMHSA)
SAMHSA leads public health efforts to advance the behavioral health of the nation by reducing the impact of substance abuse and mental illness on America’s communities. SAMHSA funds a project to develop electronic measures of primary care screening for many conditions, including autism.

Federal Agencies – Other

Department of Defense (DoD)
The Department of Defense (DoD) is charged with coordinating and supervising all agencies and functions of the government concerned directly with national security and the United States Armed Forces. Within the DoD’s Defense Health Research Program, the Congressionally Directed Medical Research Program’s Autism Research Program (ARP) was established in 2007, with the mission to improve the lives of individuals with ASD by promoting innovative research that advances the understanding of ASD and leads to improved outcomes for those with ASD. The projects that the ARP funds span the scope of the IACC.

The U.S. Air Force (DOD-AF) also funds research on ASD, and is developing a multidisciplinary autism research and services program for military families, part of which involves the creation of a comprehensive registry to provide higher quality data for autism clinical and genetics research.

Department of Education (ED)
The mission of the U.S. Department of Education is to promote student achievement by fostering educational excellence and ensuring equal access. The department funds a portfolio of ASD-related projects relating to development and delivery of educational interventions and services, particularly for children and transitionaged 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 U.S. 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 at Davis with the National Institute of Environmental Health Sciences (NIEHS)/NIH, which conducts research into how environmental exposure to toxins might interact with a person’s genes and immune system to influence the risk and severity of ASD.

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. Although NSF does not have a program focused on ASD, it funds several projects that involve basic science or technologies with the potential to be applied to ASD in the future. NSF is a leading funder of projects involving technological interventions and supports, including robotics and virtual reality technologies that could be used to enhance daily living skills and activities of individuals with disabilities.

Private Organizations

Autism Speaks (AS)
AS is the world’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments, and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. AS funds a broad profile of ASD 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 Treatment Network, a collaboration of 14 specialty centers dedicated to providing families with state-of-the-art, multidisciplinary healthcare for children and teens affected by autism.

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 spectrum disorders and their families, and funds a range of work 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 pre- and postdoctoral trainees to conduct basic and clinical research relevant to ASD, including studies focused on a wide range of topics such as identification of biomarkers, molecular and cellular mechanisms, genetic and environmental risk factors, treatments, and service delivery.

Brain & Behavior Research Foundation (BBRF)
BBRF 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.

Center for Autism and Related Disorders (CARD)
CARD is one of the world’s largest organizations using applied behavior analysis (ABA) in the treatment of ASD, and other related disorders. CARD’s research portfolio is centered around developing new behavioral interventions, assessing existing behavioral interventions, and developing and implementing training/ intervention programs for individuals on the autism spectrum from birth to age 21.

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 ASD. 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.

Simons Foundation (SF)/Simons Foundation Autism Research Initiative (SFARI)
The mission of SF is to advance the frontiers of research in mathematics and the basic sciences. SF’s single largest initiative is the Simons Foundation Autism Research Initiative (SFARI), which seeks to improve the diagnosis and treatment of ASD by funding, catalyzing, and driving innovative research of the greatest quality and relevance. The SF ASD portfolio includes research on genetic and cellular factors underlying autism, identification of genetic and environmental risk factors, and development of potential treatments.

Southwest Autism Research & Resource Center (SARRC)
SARRC’s mission is to advance research and provide a lifetime of support for individuals with autism and their families. SARRC undertakes self-directed research, serves as a satellite site for national and international projects, and provides up-to-date information, training, and assistance to families and professionals about autism. Through integrative research, educational outreach, model programs, and collaborative initiatives, SARRC sets forth, promotes, and facilitates best practices for early intervention and the long-term care of individuals with ASDs. Their current projects focus on screening tools, data monitoring, and implementing interventions.

What was the Breakdown of Funding in 2011?

Of the 20 stakeholders, agencies, and organizations that participated in the 2011-2012 Portfolio Analysis, 19 had ASD research projects that were active in 2011. In all, 1,227 projects were funded in 2011, totaling $299,879,145 (Table 3).

The National Institutes of Health (NIH) was the leading Federal (and overall) contributor of funding for ASD research in 2011 with a total of $169.2 million, funding 446 projects. The NIH funding represented an increase from the corresponding 2010 non-ARRA funding level of $159.6 million, but a decrease from the total 2010 funding figure ($217.1 million) which also included $57.5 million in ARRA funding. The next largest Federal funder was the Department of Education, with $29.5 million, followed by the Centers for Disease Control and Prevention (CDC), with $16.1 million. As in previous years, the Simons Foundation and Autism Speaks were the largest private funders of ASD research in 2011, with investments of $50.5 million and $14.9 million, respectively.

2011 ASD Research Funding by Agency/Organization

Funding Agency/Organization Project Count 2011 Funding

Funding Agency/Organization

National Institutes of Health (NIH)

Project Count

446*

2011 Funding

$169,199,177

Funding Agency/Organization

Simons Foundation (SF)

Project Count

185

2011 Funding

$50,451,927

Funding Agency/Organization

Department of Education (ED)

Project Count

140

2011 Funding

$29,529,855

Funding Agency/Organization

Centers for Disease Control and Prevention (CDC)

Project Count

28

2011 Funding

$16,083,474

Funding Agency/Organization

Autism Speaks (AS)

Project Count

179

2011 Funding

$14,872,052

Funding Agency/Organization

Health Resources and Services Administration (HRSA)

Project Count

36

2011 Funding

$9,950,267**

Funding Agency/Organization

Department of Defense – Autism Research Program (DoD-ARP)

Project Count

72

2011 Funding

$5,599,296

Funding Agency/Organization

National Science Foundation (NSF)

Project Count

51

2011 Funding

$1,428,639

Funding Agency/Organization

Administration for Community Living (ACL)

Project Count

1

2011 Funding

$750,000

Funding Agency/Organization

Center for Autism and Related Disorders (CARD)

Project Count

19

2011 Funding

$615,801

Funding Agency/Organization

Agency for Healthcare Research and Quality (AHRQ)

Project Count

5

2011 Funding

$491,768**

Funding Agency/Organization

Autism Research Institute (ARI)

Project Count

16

2011 Funding

$257,282

Funding Agency/Organization

Southwest Autism Research & Resource Center (SARRC)

Project Count

5

2011 Funding

$250,000

Funding Agency/Organization

Brain & Behavior Research Foundation (BBRF)

Project Count

18

2011 Funding

$146,730

Funding Agency/Organization

Organization for Autism Research (OAR)

Project Count

14

2011 Funding

$139,723

Funding Agency/Organization

Centers for Medicare & Medicaid Services (CMS)

Project Count

3

2011 Funding

$88,154

Funding Agency/Organization

Autism Science Foundation (ASF)***

Project Count

7

2011 Funding

$25,000

Funding Agency/Organization

Environmental Protection Agency (EPA)

Project Count

1

2011 Funding

$0

Funding Agency/Organization

Department of Defense – Air Force (DoD-AF)

Project Count

1

2011 Funding

$0

Funding Agency/Organization

Grand Total

Project Count

1,227

2011 Funding

$299,879,145

*The NIH project number shown reflects unique NIH projects. Projects 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 is counted as a separate project.

**The annual funding amount for some projects reported by AHRQ and HRSA are prorated estimates for the autism-related portion of a larger project.

***In 2011 ASF made a change in the timing of funding of new grant awards. Funding for some of the 2011 grants was awarded early (in late 2010) and some was awarded late (in early 2012). No funding for new awards was released in 2011, and so only ongoing investments are reported this year. However, some funding from both the 2010 and 2012 cycles supported projects that were being conducted in 2011.

Table 3. The table lists the total funding provided by the 19 Federal agencies and private organizations included in the 2011 Portfolio Analysis and the number of projects funded. Together, the agencies and organizations funded 1,227 projects in 2011, representing an overall investment of $299.9 million.

What was the Breakdown of Funding in 2012?

Each of the 20 stakeholders that participated in the 2011-2012 Portfolio Analysis had ASD research projects that were active in 2012. In all, 1,312 projects were funded in 2012, totaling $331,949,933 (Table 4).

The top three Federal funders of ASD research in 2012 remained the same as 2011. The National Institutes of Health (NIH) was the leading Federal (and overall) contributor of funding for ASD research in 2012 with a total of $190.6 million funding 452 projects, representing an increase from the 2011 funding level of $169.2 million. The next largest Federal funder was the Department of Education (ED) with $29.6 million, followed by the Centers for Disease Control and Prevention (CDC), with $17.2 million. As in previous years, the Simons Foundation and Autism Speaks were the largest private funders of ASD research in 2012, with investments of $56.5 million and $13.0 million, respectively.

2012 ASD Research Funding by Agency/Organization

Funding Agency/Organization Project Count 2011 Funding

Funding Agency/Organization

National Institutes of Health (NIH)

Project Count

452*

2011 Funding

$190,598,854

Funding Agency/Organization

Simons Foundation (SF)

Project Count

247

2011 Funding

$56,494,115

Funding Agency/Organization

Department of Education (ED)

Project Count

142

2011 Funding

$29,628,108

Funding Agency/Organization

Centers for Disease Control and Prevention (CDC)

Project Count

27

2011 Funding

$17,214,124

Funding Agency/Organization

Autism Speaks (AS)

Project Count

185

2011 Funding

$12,993,135

Funding Agency/Organization

Health Resources and Services Administration (HRSA)

Project Count

30

2011 Funding

$9,400,983**

Funding Agency/Organization

National Science Foundation (NSF)

Project Count

44

2011 Funding

$6,539,622

Funding Agency/Organization

Department of Defense – Autism Research Program (DoD-ARP)

Project Count

76

2011 Funding

$4,460,138

Funding Agency/Organization

Department of Defense – Air Force (DoD-AF)

Project Count

2

2011 Funding

$903,888

Funding Agency/Organization

Center for Autism and Related Disorders (CARD)

Project Count

17

2011 Funding

$583,940

Funding Agency/Organization

Brain & Behavior Research Foundation (BBRF)

Project Count

31

2011 Funding

$569,427

Funding Agency/Organization

Agency for Healthcare Research and Quality (AHRQ)

Project Count

3

2011 Funding

$490,038**

Funding Agency/Organization

Substance Abuse and Mental Health Services Administration (SAMHSA)

Project Count

1

2011 Funding

$450,000**

Funding Agency/Organization

Autism Science Foundation (ASF)***

Project Count

12

2011 Funding

$385,000

Funding Agency/Organization

Administration for Community Living (ACL)

Project Count

1

2011 Funding

$350,000

Funding Agency/Organization

Southwest Autism Research & Resource Center (SARRC)

Project Count

6

2011 Funding

$300,000

Funding Agency/Organization

Organization for Autism Research (OAR)

Project Count

19

2011 Funding

$273,182

Funding Agency/Organization

Autism Research Institute (ARI)

Project Count

14

2011 Funding

$215,379

Funding Agency/Organization

Administration for Children and Families (ACF)

Project Count

1

2011 Funding

$100,000

Funding Agency/Organization

Centers for Medicare & Medicaid Services (CMS)

Project Count

1

2011 Funding

$0

Funding Agency/Organization

Environmental Protection Agency (EPA)

Project Count

1

2011 Funding

$0

Funding Agency/Organization

Grand Total

Project Count

1,312

2011 Funding

$331,949,933

*The NIH project number shown reflects unique NIH projects and includes a small number of projects not represented in the NIH RePORT autism category. Projects funded by more than one NIH institute (“co-funds”) were combined and only counted as a single project.

**The annual funding amount for some projects reported by AHRQ, HRSA, and SAMHSA are prorated estimates for the autism-related portion of a larger project.

***In 2011 ASF made a change in the timing of funding of new grant awards. Funding for some of the 2011 grants was awarded early (in late 2010) and some was awarded late (in early 2012). No funding for new awards was released in 2011, and so only ongoing investments are reported this year. However, some funding from both the 2010 and 2012 cycles supported projects that were being conducted in 2011.

Table 4. The table lists the total funding provided by the 20 Federal agencies and private organizations included in the 2012 Portfolio Analysis and the number of projects funded. Together, the agencies and organizations funded 1,312 projects in 2012, representing an overall investment of more than $331.9 million.

Summary

As outlined in this section, numerous Federal and private funders invested in ASD research in 2011 and 2012. These investments span the range of topics outlined in the IACC Strategic Plan as well as each funder’s ASD portfolio aligning with their specific mission. A greater number of both Federal and private funders participated in the 2011-2012 Portfolio Analysis Report compared to previous years, contributing to a more comprehensive representation of U.S. ASD research funding. Funding in the overall autism research portfolio, including both Federal and private funders, increased 10.7% from 2011 to 2012. Over the five-year span from 2008 to 2012, funding increased by 49.4%, suggesting overall growth in support for ASD research.

Research Funders

 
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