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2013 IACC Autism Spectrum Disorder Research Portfolio Analysis Report

Introduction & Analysis Framework

In 2009, the Interagency Autism Coordinating Committee (IACC) launched its Strategic Plan for Autism Spectrum Disorder Research, providing a framework to guide the efforts of Federal and private funders of autism research. The IACC Strategic Plan, developed with extensive input from a broad array of Federal and public stakeholders, organizes research priorities around seven general topic areas represented as consumer-focused “questions.” The questions are divided further into research objectives that address key research needs, gaps, and opportunities identified by the Committee. Each objective includes a recommended budget that serves as an estimate of how much the Committee projects it might cost to conduct the research-related activities described. The IACC Strategic Plan was updated in 2010 and 2011, leading to a total of 78 objectives on autism research.

Following the development of the IACC Strategic Plan, the Office of Autism Research Coordination—the office within the National Institutes of Health (NIH) that manages the activities of the IACC—began issuing a series of IACC Autism Spectrum Disorder (ASD) Research Portfolio Analysis Reports to provide the IACC with comprehensive information about the status of autism research funding among Federal agencies and private research organizations in the U.S. The reports align data on individual research-related projects with objectives in the IACC Strategic Plan, providing an accounting of how much funding has gone toward support of projects related to Strategic Plan objectives and highlighting trends. This information has been used to help the IACC in their efforts to monitor ASD research efforts and track progress made each year toward achievement of objectives in the IACC Strategic Plan for ASD Research. The 2013 IACC ASD Research Portfolio Analysis Report, in addition to information on progress made toward each of the 78 objectives in the IACC Strategic Plan in 2013, also provides an analysis of progress that was made over the six-year period from 2008-2013.

To accompany the IACC 2013 ASD Research Portfolio Analysis Report, detailed 2013 Federal and private organization project data are available in the Autism Research Database, a database accessible via the IACC website (https://iacc.hhs.gov/funding/data/). Launched in 2012, this database provides stakeholders with a centralized place from which to gather valuable information about ASD research that can support their efforts to serve the autism community.

The IACC Strategic Plan Questions and Corresponding Research Areas

The Office of Autism Research Coordination (OARC) requested 2013 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 research areas corresponding to the seven questions of the 2011 IACC Strategic Plan for ASD Research are represented by the icons to the left of each question.

Subcategory Classification

In 2010, OARC introduced the subcategory classification system (Figure 2) to the IACC Portfolio Analysis Report to help the Committee and other readers of this report better understand the types of research encompassed by the projects in the research portfolio —especially those projects that are categorized as outside the objectives of the Strategic Plan but within a question’s research area. For the subcategory analysis, each project in the 2013 Portfolio Analysis Report was assigned to a subcategory based on the research area it addressed. The application of subcategory coding to projects in the portfolio helped to break the portfolio into easy-to-understand topical areas. For example, within Question 1 (Screening and Diagnosis), the projects were divided into four subcategories: Diagnostic and screening tools, Early signs and biomarkers, Intermediate phenotypes/Subgroups, and Symptomology.

IACC Strategic Plan Questions and Corresponding Research Areas by Subcategory
IACC STRATEGIC PLAN QUESTIONS AND CORRESPONDING RESEARCH AREAS by SubCategory

Figure 2. A subcategory classification system was created to allow an understanding of the autism research portfolio based on simple research topics that are relevant to each of the IACC Strategic Plan questions. Appendix D provides detailed definitions of the subcategory research areas.


ASD Research Funders and Funding in 2013

Who funded ASD research in 2013?

Ten Federal agencies and eight private funders provided their autism funding data for this analysis. These 18 agencies and organizations are listed in Table 1. The Patient-Centered Outcomes Research Institute (PCORI) is a new private funder submitting ASD research to the IACC Portfolio Analysis. PCORI was authorized by the Patient Protection and Affordable Care Act of 2010 to fund comparative clinical effectiveness research to help inform healthcare decision-making. Some funders included in previous years' Portfolio Analysis Reports either did not have projects to report in 2013 or did not choose to participate in this year’s analysis. Brief summaries of the mission areas and portfolios of the different Federal agencies and private organizations included in this analysis appear in Appendix A.

Agencies and Organizations Included in the 2013 IACC Portfolio Analysis
Federal Agencies Private Organizations

Federal Agencies

  • Administration for Children and Families (ACF)
  • 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)

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)
  • Patient-Centered Outcomes Research Institute (PCORI)
  • Simons Foundation (SF)

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

Table 1. Projects from ten Federal agencies and eight private organizations were included in the 2013 IACC Autism Spectrum Disorder Research Portfolio Analysis Report.

How much ASD research was funded in 2013?

Combined, the estimated Federal and private investment in ASD research in 2013 was $305,580,132. While overall funding for autism research decreased by $26 million from 2012 to 2013, the proportion of Federal and private funding remained relatively constant over this period, with the proportion only shifting by roughly 2% from Federal to private since 2012. In 2013, the Federal government provided 76% ($232.6 million) and private organizations provided 24% ($72.9 million) of the total funding for ASD research (Figure 3).

Graph of private versus federal autism research funding.  Private had about 72 million dollars and federal was about 232 million.

Figure 3. In 2013, 76% of ASD research was provided by Federal sources, while 24% of funding was provided by private organizations.

What funding trends were observed?

  • Combined Federal and private investment in ASD research decreased from 2012 ($331.9 million) to 2013 ($305.6 million) (Figure 4).
  • Private investment in ASD research was higher in 2013 ($72.9 million) than in previous years ($66.8 million in 2011 and $71.8 million in 2012).
  • The amount of Federal investment in autism research reported in 2013 ($232.6 million) was lower than the amount reported in 2012 ($260.1 million), and slightly lower than the 2011 level ($233.1 million).
  • As stated in previous 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 those years.
  • One factor that may have contributed to the decrease in Federal funding for ASD research from 2012 to 2013 is that the overall budget of the National Institutes of Health (NIH), the largest Federal funder of ASD research, was reduced from $30.8 billion in 2012 to $29.1 billion in 2013.
  • While one new private funder (the Patient-Centered Outcomes Research Institute) was added to the 2013 Portfolio Analysis, the new funder contributed only one project in 2013, so the impact on the total funding was relatively small.
Bar Graph of combined federal and private autism research funding.

Figure 4. This figure illustrates levels of autism research funding from combined Federal and private sources during 2008-2013 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 2013. 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. Table 2 also provides some additional information about the institutions and states that had a large number of projects in 2013.

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.

Which U.S. institutions received the most autism research funding in 2013?

Institution 2013 Funding 2013 Project Count

Institution

National Institutes of Health – Intramural Research Program

2013 Funding

$21,775,796

2013 Project Count

17

Institution

University of California, Los Angeles

2013 Funding

$17,361,222

2013 Project Count

45

Institution

University of California, Davis

2013 Funding

$16,603,446

2013 Project Count

54

Institution

University of North Carolina, Chapel Hill

2013 Funding

$13,905,807

2013 Project Count

38

Institution

Yale University

2013 Funding

$9,141,660

2013 Project Count

36

Institution

Columbia University

2013 Funding

$8,566,328

2013 Project Count

22

Institution

Massachusetts Institute of Technology

2013 Funding

$7,758,566

2013 Project Count

14

Institution

Boston Children’s Hospital

2013 Funding

$6,969,353

2013 Project Count

23

Institution

Stanford University

2013 Funding

$6,483,950

2013 Project Count

31

Institution

University of California, San Diego

2013 Funding

$5,697,893

2013 Project Count

18

Which states received the most autism research funding in 2013?

Institution 2013 Funding 2013 Project Count

Institution

California

2013 Funding

$64,365,170

2013 Project Count

261

Institution

Massachusetts

2013 Funding

$36,163,166

2013 Project Count

127

Institution

New York

2013 Funding

$31,419,366

2013 Project Count

132

Institution

North Carolina

2013 Funding

$17,636,048

2013 Project Count

63

Institution

Connecticut

2013 Funding

$15,289,885

2013 Project Count

51

Table 2. Institutions and states with the most ASD-related research funding from Federal and private sources in 2013.

How much ASD research funding did each funder provide in 2013?

Each of the 18 stakeholders, agencies, and organizations that participated in the 2013 Portfolio Analysis had ASD research projects that were active in 2013. In all, 1,279 projects were funded in 2013, totaling $305,580,132 (Table 3).

The National Institutes of Health (NIH) was the leading Federal (and overall) contributor of funding for ASD research in 2013 with a total of $175.9 million, funding 410 projects. NIH funding for autism research decreased by $14.7 million from 2012 to 2013; the agency experienced a $1.7 billion reduction in overall budget during the same period. The next largest Federal funder in autism research was the Department of Education, with $22.7 million, followed by the Centers for Disease Control and Prevention (CDC), with $16.1 million. The Department of Education experienced a $6.8 million decrease in funding from 2012 to 2013, while CDC funding in autism research stayed the same. As in previous years, the Simons Foundation and Autism Speaks were the largest private funders of ASD research in 2013, with investments of $50.4 million and $18.6 million, respectively. The percentage of overall ASD research funding provided by each agency is depicted in Figure 6.

2013 ASD Research Funding by Agency/Organization
Funding Agency/Organization Project Count 2013 Funding

Funding Agency/Organization

National Institutes of Health (NIH)

Project Count

410*

2013 Funding

$175,908,374

Funding Agency/Organization

Simons Foundation (SF)

Project Count

267

2013 Funding

$50,445,045

Funding Agency/Organization

Department of Education (ED)

Project Count

130

2013 Funding

$22,716,258

Funding Agency/Organization

Centers for Disease Control & Prevention (CDC)

Project Count

26

2013 Funding

$16,077,048

Funding Agency/Organization

Autism Speaks (AS)

Project Count

183

2013 Funding

$18,632,127

Funding Agency/Organization

Health Resources and Services Administration (HRSA)

Project Count

25

2013 Funding

$7,201,186**

Funding Agency/Organization

Department of Defense – Army (DoD-Army)

Project Count

49

2013 Funding

$4,514,151

Funding Agency/Organization

National Science Foundation (NSF)

Project Count

38

2013 Funding

$2,349,449

Funding Agency/Organization

Patient-Centered Outcomes Research Institute (PCORI)

Project Count

1

2013 Funding

$1,757,884

Funding Agency/Organization

Environmental Protection Agency (EPA)

Project Count

1

2013 Funding

$1,660,178

Funding Agency/Organization

Agency for Healthcare Research and Quality (AHRQ)

Project Count

6

2013 Funding

$1,233,747**

Funding Agency/Organization

Department of Defense – Air Force (DoD-AF)

Project Count

1

2013 Funding

$966,000

Funding Agency/Organization

Centers for Autism and Related Disorders (CARD)

Project Count

19

2013 Funding

$602,300

Funding Agency/Organization

Brain & Behavior Research Foundation (BBRF)

Project Count

49

2013 Funding

$562,986

Funding Agency/Organization

Autism Science Foundation (ASF)

Project Count

28

2013 Funding

$389,000

Funding Agency/Organization

Organization for Autism Research (OAR)

Project Count

20

2013 Funding

$340,235

Funding Agency/Organization

Autism Research Institute (ARI)

Project Count

24

2013 Funding

$210,669

Funding Agency/Organization

Centers for Medicare & Medicaid Services (CMS)

Project Count

1

2013 Funding

$13,495

Funding Agency/Organization

Administration for Children & Families (ACF)

Project Count

1

2013 Funding

$0

Funding Agency/Organization

Total

Project Count

1,279

2013 Funding

$305,580,132

*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./p>

Table 3. The table lists the total funding and number of projects provided by the 18 Federal agencies and private organizations included in the 2013 Portfolio Analysis. Together, the agencies and organizations funded 1,279 projects in 2013, representing an overall investment of $305,580,132.

The figure illustrates the percentage of total ASD research funding contributed by the 18 Federal agencies and private organizations included in the 2013 Portfolio Analysis.

Figure 6. The figure illustrates the percentage of total ASD research funding contributed by the 18 Federal agencies and private organizations included in the 2013 Portfolio Analysis. NIH provided the largest proportion of funding (57.6%), while Simons Foundation made the largest contribution of the private organizations (16.5%).

Summary of ASD Research Funding in 2013

As outlined in this section, numerous Federal and private funders invested in ASD research conducted across the country in 2013. Funding for the overall autism research portfolio decreased 8.0% from 2012 to 2013, with Federal funding falling 10.6% and private funding growing 1.6%. Over the six-year span from 2008-2013, funding increased by 38%, suggesting continued overall growth in support of ASD research.


ASD Research Areas and Progress in 2013

What areas of ASD research were funded in 2013?

To better understand what areas of research were funded in 2013, projects were aligned with the corresponding questions in the 2011 IACC Strategic Plan. Figure 7 illustrates the breakdown of the research funding according to the Strategic Plan’s seven questions related to Screening and Diagnosis (Q1), Biology (Q2), Risk Factors (Q3), Treatments and Interventions (Q4), Services (Q5), Lifespan Issues (Q6), and Infrastructure and Surveillance (Q7). Identifying how current research investments correspond to the Strategic Plan provides an understanding of how funders have directed investments across each of the priority areas identified by the IACC, as well as an indication of which areas are well supported versus those that may be in need of additional attention or development.

Pie chart shows percentage of funding by Strategic Plan question.

Figure 7. Topic areas are defined by each question in the IACC Strategic Plan. The seven questions of the Strategic Plan are represented in the clockwise direction, beginning with Screening and Diagnosis (Question 1) and ending with Infrastructure and Surveillance (Question 7).

ASD research funding in 2013 supported projects relevant to all seven of the critical questions in the IACC Strategic Plan for ASD Research. As in previous years, the largest portion of funding addressed the underlying biology (Question 2) of ASD (32%). This was followed by research into treatments and interventions (Question 4) for ASD (19%), including behavioral therapies, pharmacological treatments, and technology-based interventions. Question 3, research aimed at identifying potential causesand risk factors for the disorder, followed closely with 18% of total funding. Investment in research infrastructure and surveillance (Question 7) stayed the same as 2012 at 14%. Research to improve screening and diagnosis (Question 1) of ASD showed the largest change —a 2% decrease —from 11% in 2012 to 9% in 2013. Research focused on services (Question 5) and lifespan issues (Question 6) remained the smallest areas of funding (7% and 1%, respectively). The percentages of funding for each question were similar to those seen in 2012.

When the number of active projects that align with each question, as opposed to the total funding for these projects is considered, the distribution is subtly different due to differences in the relative sizes of projects falling under each of the seven question categories. In 2013, the percentage of total projects aligned with each question were as follows: Question 1, 10%; Question 2, 37%; Question 3, 11%; Question 4, 20%; Question 5, 10%; Question 6, 2%; Question 7, 9% (Figure 8). For example, the number of projects aligning with Question 5 is considerably greater than might be expected based on the proportion of overall funding aligning with this question, demonstrating that individual projects in this area tend to be smaller in size. In contrast, there are fewer projects aligning with Question 3 and Question 7 than might be expected based on the percentages of funding. This indicates that the size of the awards for infrastructure and surveillance projects (Question 7) and projects related to investigation of risk factors (Question 3) tend to be larger, reflecting the greater cost that would be expected for carrying out research in these areas, which often require large-scale studies (Question 3) and database/biobank development and maintenance (Question 7). Figure 8 shows the distribution of active projects among the Strategic Plan questions.

Pie chart shows 2013 projects aligned to Strategic Plan questions.

Figure 8. 2013 projects aligned to Strategic Plan questions.

How many new research projects were added in 2013 compared to ongoing research?

Each project included in the Portfolio Analysis is classified as either “Ongoing” or “New.” Ongoing projects were active in the previous year (2012), and new projects became active and received funding for the first time in the current year of the analysis (2013). In 2013, approx¬imately 77% of overall ASD research funding went to ongoing projects while 23% went to new projects. Since most research projects are funded for a duration of mul¬tiple years of work, a larger number of ongoing projects compared with new projects would be expected.

However, it is interesting to note that research related to screening and diagnosis (Question 1) and research related to lifespan issues (Question 6) had higher proportions of funding devoted to new projects compared with the overall average. In contrast, funding for infra¬structure and surveillance (Question 7) had a higher portion of funding going to ongoing projects, which would be expected due to the long-term infrastructure and data resources these projects provide to the autism research community (Figure 9).

Bar chart shows The percentages of ASD research funding going to new versus ongoing projects varies between Strategic Plan questions.

Figure 9. The percentages of ASD research funding going to new versus ongoing projects varies between Strategic Plan questions.

What types of research are funded by the different agencies and organizations?

The Federal and private funders included in this Portfolio Analysis Report fund a wide range of autism-related research projects. As shown in Figure 10, Federal and private funders contributed to funding for each of the question areas in the IACC Strategic Plan for ASD Research in 2013. However, the proportions of Federal and private funding varies by question area, suggesting that some areas align more closely with Federal or private priorities and/or capabilities. For example, infrastructure and surveillance projects (Question 7) received nearly equal support from Federal and private sources, while research on screening and diagnosis (Question 1) and services (Question 5) is largely supported by funding from Federal sources.

In addition to the variation in Federal and private support of research in each question area, the type of research represented in the portfolios of individual funders varies based on the mission of each individual agency or organization. Figure 11 depicts the proportion of funded projects for each agency and organization for each of the seven question areas of the IACC Strategic Plan. Figure 12 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.

Bar chart shows Federal vs Private funding by question.

Figure 10. Federal and private funding was provided for each Strategic Plan question area in 2013, although the proportion of Federal vs. private funding varied between question areas.

Bar chart Percentage of Funding by Each Funder According to Question

Figure 11. The proportion of each Federal agency and private organization's funding in the Portfolio Analysis organized by IACC Strategic Plan question for 2013. ACF was not included in this figure since they did not have any funding reported in 2013.

Bar chart showing Percentage of Total ASD Funding by Question According to Funder

Figure 12. The portfolio of each Federal agency and private organization’s autism-related projects by Strategic Plan question for 2013. Please note that this figure is based on funding amount from 2013. Thus, while funders may support additional areas of research, that may not be reflected in this particular year. Note that the Administration for Children and Families (ACF) had one active project, and therefore is included in the analysis, but the active project received no funding in 2013.

How did the research projects funded in 2013 align with the objectives in the IACC Strategic Plan?

The 78 Strategic Plan objectives were developed by the IACC to set priorities for investment, and they represent areas where the Committee perceived gaps in research that required further research efforts. The 2013 autism research-related projects were matched with the best fitting research objective in the Strategic Plan, though in some cases, projects could only be assigned to a Strategic Plan question, and for the objective category, were assigned to Core/Other. The Core/Other category captures projects that may be related to crosscutting or “core” activities that help support the autism research field, projects in well-established areas of science that do not fit within the parameters of the specific research objectives outlined in the Strategic Plan, or projects that represent emerging areas of research. The Core/Other designation was developed by the IACC because the Committee felt it would help readers understand that even though activities in this category fall outside the specific research objectives of the Strategic Plan, they represent projects that are contributing in important ways to the progress of ASD research.

Analysis of the 2013 project portfolios to determine the proportion of projects that fit within Strategic Plan objectives versus the proportion that did not fit within Strategic Plan objectives (Figure 13) showed that in 2013, 25% of the funding went to projects that were not specific to a particular objective. In addition, Figure 14 shows that every question of the Strategic Plan included projects that were not specific to a particular objective (projects coded to Core/Other). Of all seven questions of the Strategic Plan, Question 2 contained the largest proportion of funding that did not align with any specific objective (47%). More detail on the types of research represented by projects that were categorized as Core/ Other can be found in the subsequent chapters of this report that are focused on each Strategic Plan question.

Pie chart showing Percentage of funding for specific objectives vs non objectives

Figure 13. 25% of funding went to projects that were not specific to a particular Strategic Plan objective, and were designated Core/Other.

Bar chart showing ASD funding alignment with IACC Strategic Plan Objectives

Figure 14. Each question in the Strategic Plan contained projects that were not specific to a particular objective, designated Core/Other. Funding for projects that fall under specific objectives are indicated in blue, and Core/Other projects are indicated in yellow. Subcategory analysis provided within the summary for each question of the Strategic Plan provides a description of the research areas addressed by all projects, including those assigned to Core/Other.

Summary of Progress toward IACC Strategic Plan Objectives

The 78 objectives in the Strategic Plan describe specific research priorities identified by the IACC, each with a goal date for initiation and a professional judgment estimate of the budget that may be required to accomplish the objective.1 Each ASD project that received funding in 2013 was evaluated with respect to the 78 objectives in the 2011 IACC Strategic Plan for ASD Research2 in order to determine which Strategic Plan question and objective it fulfilled. Analysis of the full portfolio of Federal government and privately funded projects aligned with the IACC Strategic Plan objectives yielded information about the progress that has been made toward completion of the objectives in the 2011 Strategic Plan. In 2013, this analysis indicated that of the 78 objectives in the IACC Strategic Plan, 95% (74 objectives) were underway or completed (green or yellow in the stoplight figure as explained below) (Figure 15). Further discussion of the progress toward achievement of individual Strategic Plan objectives is found in subsequent chapters of this report. The analysis also enabled assessment of areas of research where more work may be needed to achieve Strategic Plan objectives.

Upcoming chapters in this report give an overview of the progress on completing objectives in each question of the Strategic Plan in 2013. The overall progress for each question over the period from 2008-2013 is denoted by a stoplight figure at the end of each chapter. Within each stoplight figure, the number in the green light indicates the number of objectives that have been considered completed, the number in the yellow light indicates the number of objectives partially completed, and the number of objectives in the red light indicates the number of objectives where no progress has been documented through the portfolio analysis. Each of the chapters describing the progress in the seven Strategic Plan question areas also contains a table that provides information about the progress made toward completion of the Strategic Plan objectives over a six-year period from 2008 through 2013.

Color coded image showing Summary of Overall Progress on Strategic Plan Objectives through 2013

Figure 15. This figure provides the percentage of the total number of IACC Strategic Plan objectives that have been completed to date, based on an analysis of funded projects assigned to each of the Strategic Plan’s 78 objectives. As of 2013, 95% of objectives were either complete or partially complete (had all or some of the required funded projects), with 5% of objectives having no activity/assigned projects.

1Professional judgment budget estimates for each of the IACC Strategic Plan objectives were formulated by scientific and program experts in the field and provide an estimate of what it may cost to conduct each of the projects described. The IACC provided these budget recommendations as guidance to Federal agencies and partner organizations on the potential cost of conducting the recommended research. The IACC’s role in research is advisory, and the Committee does not have its own research budget to conduct or support research.

2The 2011 IACC Strategic Plan is the most recent update of the Strategic Plan where new objectives were added. The subsequent 2012 and 2013 Updates of the Strategic Plan did not include any edits to the objectives, therefore the objectives as described in the 2011 IACC Strategic Plan were used to code the 2013 projects to specific objectives.


Analysis of Progress toward IACC Strategic Plan Objectives by Research Area

Strategic Plan Question 1 and Associated research area

Aspirational goal: Children at risk for ASD will be identified through reliable methods before ASD behavioral characteristics fully manifest.


Research Focus of Question 1

Question 1 of the IACC Strategic Plan (“When should I be concerned?”) pertains to the issues surrounding screening for and diagnosis of ASD, with a focus on early identification of children showing signs of ASD so that they have the opportunity to receive interventions and supports that will lead to improved outcomes. The objectives within this chapter of the Strategic Plan include research to develop biomarkers, screening tools, and diagnostic instruments to aid in early identification. Question 1 also includes research to better understand and overcome barriers to early identification, including efforts to increase access to health services, and to develop or adapt screening and diagnostic tools for use in a wide variety of community settings, at low cost, and in diverse populations. The Committee also prioritized the need for screening and diagnostic tools for use in adolescents and adults, and for improved measures that can be used to assess intervention and service needs. Projects addressing issues related to adult screening and diagnosis may be captured either within Question 1 or Question 6 of the Strategic Plan (Question 6 focuses on issues relevant to transitioning youth and adults on the autism spectrum). In an effort to describe the research funded in Question 1 in 2013, a word cloud was generated using the project titles listed under this question research area (Figure 16). The size of each word within the word cloud indicates the frequency of its use in project titles. The word cloud visually portrays the main research themes and topics that were funded in Question 1.

Word cloud representing themes in Question 1 project titles.

Figure 16. Word cloud representing themes in Question 1 project titles.

Analysis of 2013 Question 1 Portfolio

When analyzing the distribution of research dollars across the seven question areas described in the IACC Strategic Plan, projects assigned to Question 1 comprised 9% ($27.7 million) of the total ASD research supported by Federal and private funders in 2013. The number of projects assigned to Question 1 totaled 127 projects, which was 10% of all projects included in the portfolio. The largest funders of research pertaining to Question 1 are the National Institutes of Health, Simons Foundation, and Autism Speaks. Progress made in Question 1 is measured through nine objectives. Figure 17 provides a detailed overview of each objective’s total funding in 2013 as well as the number of projects assigned to each objective.

Bar chart showing Question 1 objectives broken down by their funding and project count.

Figure 17. Question 1 objectives broken down by their funding and project count.

In 2013, four Question 1 objectives achieved their recommended annualized funding target, three partially achieved their annualized funding target, and two had no active projects or funding. As was the case in 2011 and 2012, the Question 1 objective receiving the most funding in 2013 was 1.L.A, which focuses on identifying biomarkers for ASD; it received 34% ($9.4 million) of the Question 1 funding in 2013. This was followed by Objective 1.L.B, which supports the development of behavioral and biological measures for diagnosis and risk assessment, accounting for 28% ($7.8 million) of Question 1 overall funding. Objectives 1.L.A and 1.L.B had the largest amount of projects as well. All other objectives received less than 15% of Question 1 funding in 2013, and only 1% of Question 1 funding went to projects categorized as Core/Other, which are projects not specific to Question 1 objectives. Studies to under¬stand the impact of early diagnosis on choice of intervention and outcomes (1.S.D) did not have any activity in 2013. Although Objective 1.S.F was also not funded in 2013, it was already considered completed due to workshops convened in previous years. Table 4 lists all the objectives and their progress to date.

Question 1 Subcategory Analysis

With the development of the subcategory categorization scheme for the IACC ASD Research Portfolio Analysis, all projects can be categorized into broad research-related topic areas or themes, including projects that did not fit within the specific research objectives laid out in the Strategic Plan. This enables a more comprehensive understanding of the distribution of all projects across the general research areas aligning with Question 1. Overall, projects in Question 1 neared $27.7 million in 2013 and were divided into four subcategories: Diagnostic and screening tools; Early signs and biomarkers; Inter¬mediate phenotypes/Subgroups; and Symptomology (Figure 18).

Of the four subcategories related to Question 1 (Screening and Diagnosis), in 2013 the largest proportion of funding was devoted to identifying Early signs and biomarkers for ASD (43%), which contained 56 projects. Included in this subcategory were biological indicators (including genetic, metabolic, and brain structure/connectivity) and behavioral biomarkers that can be used for screening/ diagnosis or to measure progress or treatment response. The development of Diagnostic and screening tools (32%), which accounted for 36 projects, was the second largest research investment in Question 1. This was followed by research characterizing Symptomology (14%; 25 projects). The subcategory receiving the lowest proportion of funding included research on identifying/ characterizing Intermediate phenotypes/Subgroups of people with ASD (12%) with only 10 projects.

Pie chart showing Question 1 funding by subcategory in 2013.

Figure 18. Question 1 funding by subcategory in 2013.

Progress Made on Question 1 from 2008-2013

Figure 19 shows the trend in Question 1 funding over time. When considering annual funding for Question 1 from 2008-2013, portfolio analysis data showed that funding levels stayed relatively flat since 2008, with the exception of 2009 and 2010, during which Federal funding for autism research was increased due to the American Recovery and Reinvestment Act.

Graph showing Question 1 ASD research funding from 2008-2013.

Figure 19. Question 1 ASD research funding from 2008-2013. Funding for Question 1 was moderate and stayed relatively flat over the six-year span.

Progress made on Question 1 Objectives from 2008-2013

After six years of funding, four of the Question 1 objectives were considered completed in terms of the recommended amount of total funding invested. Of the remaining Question 1 objectives, partial progress was made on four, while no progress was documented through the portfolio analysis data collection on one objective (Figure 20). Table 4 provides an overview of progress made on all nine of the research objectives within Question 1 over the period from 2008-2013.

Stop light with red = 1, yellow = 4, and green = 4, showing progress of 9 question 1 objectives

Figure 20. Overall status of progress for the nine Question 1 objectives.


Question 1: When Should I Be Concerned?

IACC Strategic Plan Objectives Funding
Year 2008 2009 2010 2011 2012 2013 Total

IACC Strategic Plan Objectives

Develop, with existing tools, at least one efficient diagnostic instrument (i.e., briefer, less time intensive) that is valid in diverse populations for use in large-scale studies by 2011.

IACC Recommended Budget: $5,300,000 over 2 years

Funding 2008

1.1
$75,000
2 projects

Funding 2009

1.S.A
$4,728,120
15 projects

Funding 2010

1.S.A
$4,963,192
15 projects

Funding 2011

1.S.A
$2,387,955
8 projects

Funding 2012

1.S.A
$2,214,544
8 projects

Funding 2013

1.S.A
$3,200,652
10 projects

Funding Total

$17,569,463

IACC Strategic Plan Objectives

Validate and improve the sensitivity and specificity of new or existing screening and diagnostic tools, including comparative studies of general developmental screening versus autism-specific screening tools, in both high-risk and population-based samples, including those from resource-poor international settings and those that are diverse in terms of age, socio-economic status, race, ethnicity, gender, characteristics of ASD, and general level of functioning by 2012.

IACC Recommended Budget: $5,400,000 over 3 years

Funding 2008

1.2
$1,246,922
8 projects

Funding 2009

1.S.B
$3,973,711
11 projects

Funding 2010

1.S.B
$2,443,557
11 projects

Funding 2011

1.S.B
$1,120,246
10 projects

Funding 2012

1.S.B
$2,255,138
13 projects

Funding 2013

1.S.B
$3,634,193
20 projects

Funding Total

$14,673,768

IACC Strategic Plan Objectives

Conduct at least three studies to identify reasons for the health disparities in accessing early screening and diagnosis services, including identification of barriers to implementation of and access to screening, diagnosis, referral, and early intervention services among diverse populations, as defined by socioeconomic status, race, ethnicity, and gender of the child, by 2012.

IACC Recommended Budget: $2,000,000 over 2 years

Funding 2008

N/A

Funding 2009

1.S.C
$139,072
1 project

Funding 2010

1.S.C
$0
0 projects

Funding 2011

1.S.C
$28,000
1 project

Funding 2012

1.S.C
$629,521
3 projects

Funding 2013

1.S.C
$1,038,848
5 projects

Funding Total

$1,835,441

IACC Strategic Plan Objectives

Conduct at least two studies to understand the impact of early diagnosis on choice of intervention and outcomes by 2015.

IACC Recommended Budget: $6,000,000 over 5 years

Funding 2008

N/A

Funding 2009

1.S.D
$0
0 projects

Funding 2010

1.SD
$0
0 projects

Funding 2011

1.S.D
$0
0 projects

Funding 2012

1.S.D
$0
0 projects

Funding 2013

1.S.D
$0
0 projects

Funding Total

$0

IACC Strategic Plan Objectives

Conduct at least one study to determine the positive predictive value and clinical utility (e.g., prediction of co-occurring conditions, family planning) of chromosomal microarray genetic testing for detecting genetic diagnoses for ASD in a clinical setting by 2012.

IACC Recommended Budget: $9,600,000 over 5 years

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

1.S.E
$2,180,042
3 projects

Funding 2011

1.S.E
$690,019
1 project

Funding 2012

1.S.E
$1,273,122
4 projects

Funding 2013

1.S.E
$983,936
3 projects

Funding Total

$5,127,119

IACC Strategic Plan Objectives

Convene a workshop to examine the ethical, legal, and social implications of ASD research by 2011. The workshop should define possible approaches for conducting future studies of ethical, legal, and social implications of ASD research, taking into consideration how these types of issues have been approached in related medical conditions.

IACC Recommended Budget: $35,000 over 1 year
*completed in 2011

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

1.S.F
$0
0 projects

Funding 2011

1.S.F*
$71,489
1 project

Funding 2012

1.S.F*
$0
0 projects

Funding 2013

1.S.F*
$0
0 projects

Funding Total

$71,489

IACC Strategic Plan Objectives

Identify behavioral and biological markers that separately, or in combination, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD, and evaluate whether these risk markers or profiles can improve early identification through heightened developmental monitoring and screening by 2014.

IACC Recommended Budget: $33,300,000 over 5 years

Funding 2008

1.3
$2,885,940
14 projects

Funding 2009

1.L.A
$16,465,034
43 projects

Funding 2010

1.L.A
$13,270,045
45 projects

Funding 2011

1.L.A
$12,416,466
43 projects

Funding 2012

1.L.A
$12,894,621
40 projects

Funding 2013

1.L.A
$9,357,851
37 projects

Funding Total

$67,289,957

IACC Strategic Plan Objectives

Develop at least five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015.

IACC Recommended Budget: $71,100,000 over 5 years

Funding 2008

1.4
$5,773,203
18 projects

Funding 2009

1.L.B
$8,760,010
34 projects

Funding 2010

1.L.B
$15,228,060
52 projects

Funding 2011

1.L.B
$9,376,400
42 projects

Funding 2012

1.L.B
$12,813,396
39 projects

Funding 2013

1.L.B
$7,822,255
38 projects

Funding Total

$59,773,324

IACC Strategic Plan Objectives

Identify and develop measures to assess at least three "continuous dimensions" (i.e., social reciprocity, communication disorders, and repetitive/restrictive behaviors) of ASD symptoms and severity that can be used by practitioners and/or families to assess response to intervention for people with ASD across the lifespan by 2016.

IACC Recommended Budget: $18,500,000 over 5 years

Funding 2008

1.5
$912,159
2 projects

Funding 2009

1.L.C
$861,069
6 projects

Funding 2010

1.L.C
$3,893,622
22 projects

Funding 2011

1.L.C
$2,353,440
15 projects

Funding 2012

1.L.C
$2,600,028
15 projects

Funding 2013

1.L.C
$1,224,987
7 projects

Funding Total

$11,845,305

IACC Strategic Plan Objectives

Not specific to any objective (Core/Other Activities)

Funding 2008

1. Core/Other Activities
$18,229,985
63 projects

Funding 2009

1. Core/Other Activities
$9,766,926
37 projects

Funding 2010

1. Core/Other Activities
$3,643,562
18 projects

Funding 2011

1. Core/Other Activities
$2,310,877
16 projects

Funding 2012

1. Core/Other Activities
$2,175,749
13 projects

Funding 2013

1. Core/Other Activities
$389,937
7 projects

Funding Total

$36,517,036

IACC Strategic Plan Objectives

Total funding for Question 1

Funding 2008

$29,123,209
107 projects

Funding 2009

$44,693,942
147 projects

Funding 2010

$45,622,080
166 projects

Funding 2011

$30,754,892
137 projects

Funding 2012

$36,856,119
135 projects

Funding 2013

$27,652,659
127 projects

Funding Total

$214,702,902

Question 1: Multiyear Funding Table, see Appendix C for a color-coding key and further details.

Table 4. Multiyear funding table for Question 1.


Strategic Plan Question 2 Biology

Aspirational goal: Discover how ASD affects development, which will lead to targeted and personalized interventions.


Research Focus of Question 2

Question 2 (“How can I understand what is happening?”) addresses the underlying biology of ASD. Research in this field focuses on identifying the biological differences and mechanisms in early development and throughout life that contribute to ASD, as well as the characterization of the behavioral and cognitive aspects of ASD. Projects range from basic neuroscience using cellular and animal models to clinical studies. Taken together, the aim of the research represented by Question 2 is to understand the biological processes underlying ASD from the molecular level to sensory, motor, behavioral, and cognitive development and functioning.

A word cloud was created using the project titles listed under Question 2 to provide a visual representation of the research funded in 2013 Figure 21. The size of each word within the word cloud indicates the frequency of its use in project titles. The word cloud visually depicts the main research themes and topics that were funded in Question 2.Word cloud representing themes in Question 2 project titles.

Word cloud representing themes in Question 2 project titles.

Figure 21. Word cloud representing themes in Question 2 project titles.

Analysis of 2013 Question 2 Portfolio

Among the seven question areas described in the IACC Strategic Plan, Question 2 accounted for the largest portion of the ASD research portfolio in 2013. Following similar trends as previous years, research on the biology of ASD (Question 2) comprised 32% of total funding ($96.9 million) and 37% of all projects (476 projects). The agencies and organizations with the largest investments in Question 2 are the National Institutes of Health, Simons Foundation, and Autism Speaks. All nine objectives in Question 2 experienced at least some progress in 2013. Figure 22 provides a detailed overview of each objective’s total funding in 2013 as well as the number of projects assigned to each objective.

The majority of projects that were categorized under this question did not fit into any of the specific Question 2 research objectives and were assigned as Question 2 ore/Other ($45.8 million, 47%), similar to what was reported in previous years. As is described in the previous section of this report, projects designated as Core/Other correspond to research areas that were already established and/or well-funded at the time the Strategic Plan was developed, as well as areas of emerging science that may not have been captured in the Strategic Plan objectives. The next largest portion of funding went to Objective 2.S.D ($18.6 million, 19%), which focuses on the underlying biology of genetic conditions related to ASD, such as Rett Syndrome and Fragile X Syndrome. Objective 2.S.G, which includes projects investigating a link between specific genotypes and functional or structural phenotypes, had the next greatest portion of funding ($12.6 million, 13%). Across portfolio analyses, Objectives 2.S.D and 2.S.G. have received the largest portion of Question 2 funding consistently since 2009. Table 5 lists all the objectives and their progress to date.

Bar chart showing Question 2 objectives broken down by their funding and project count.

Figure 22. Question 2 objectives broken down by their funding and project count.

Question 2 Subcategory Analysis

Due to the large proportion of research in Question 2 that could not be assigned to a particular objective, the subcategory analysis was particularly useful in under¬standing the distribution of research on the underlying mechanisms of ASD. Research in this area covers a broad array of science, and therefore Question 2, which received approximately $96.9 million of total funding in 2013, was divided into several subcategories. These include: Cognitive studies; Computational science; Co-occurring conditions; Developmental trajectory; Immune/Metabolic pathways; Molecular pathways; Neural systems; Neuropathology; Sensory and motor function; and Subgroups/Biosignatures (Figure 23).

As was the case in 2011 and 2012, the Question 2 subcategory with the largest portion of funding was Molecular pathways (32%; 170 projects), which includes investigating systems of genes, proteins, and other molecules that are involved in ASD and related disorders. Research exploring the Neural systems (18%) was the second largest investment and included 82 projects. The third largest subcategory focused on projects aiming to identify Subgroups/Biosignatures (17%; 62 projects). Research into the Developmental trajectory of ASD, including longitudinal studies that follow social, behavioral, and physical development over time accounted for 9% of Question 2 funding and included 21 projects. Projects investigating Sensory and motor function and Co-occurring conditions both accounted for roughly 5% of funding and included 26 and 25 projects, respectively. Cognitive studies accounted for 4% of ASD funding and included 23 projects. Research in Computational science (18 projects), Immune/Metabolic pathways (31 projects), and Neuropathology (18 projects) all accounted for about 3% of funding in 2013.

Bar chart showing Question 2 funding by subcategory.

Figure 23. Question 2 funding by subcategory in 2013.

Progress Made on Question 2 From 2008-2013

Figure 24 shows the trend in Question 2 funding over time. Overall, funding for projects within Question 2 was higher than those of other question areas. When considering annual funding for Question 2 from 2008-2013, portfolio analysis data showed that funding levels for this question potentially seemed to plateau somewhat in recent years, despite having undergone a significant increase from 2008-2013.

Line chart showing Question 2 funding by strategic plan question.

Figure 24. Question 2 ASD research funding from 2008-2013. Funding for Question 2 rapidly increased, and then leveled off, over the six-year span.

Progress Made on Question 2 Objectives From 2008-2013

As of 2013, five of the nine Question 2 objectives were considered completed in terms of meeting their overall budget recommendations, while four objectives were considered partially completed (Figure 25). The funding received for Question 2 Objective 2.S.C in 2013 was enough to change its overall status from “partially completed” as of 2012 to “completed” as of 2013. Objective 2.S.C addressed the need to increase awareness among the autism spectrum community about the importance of brain and tissue donation to further basic research. Table 5 provides a snapshot of progress made on all nine of the research objectives within Question 2 over the period from 2008-2013.

Stop light with 0 as red, 4 as yellow and 5 as green, for question 2 overall progress.

Figure 25. Overall status of progress for the nine Question 2 objectives.


Question 2: How Can I Understand What is Happening?

IACC Strategic Plan Objectives Funding
Year 2008 2009 2010 2011 2012 2013 Total

IACC Strategic Plan Objectives

Support at least four research projects to identify mechanisms of fever, metabolic and/or immune system interactions with the central nervous system that may influence ASD during prenatal-postnatal life by 2010 (Fever studies to be started by 2012).

IACC Recommended Budget: $9,800,000 over 4 years

Funding 2008

2.2
$3,377,568
18 projects

Funding 2009

2.S.A
$3,584,634
30 projects

Funding 2010

2.S.A
$4,972,407
37 projects

Funding 2011

2.S.A
$2,013,417
25 projects

Funding 2012

2.S.A
$3,049,827
26 projects

Funding 2013

2.S.A
$2,801,876
29 projects

Funding Total

$19,799,729

IACC Strategic Plan Objectives

Launch three studies that specifically focus on the neurodevelopment of females with ASD, spanning basic to clinical research on sex differences by 2011.

IACC Recommended Budget: $8,900,000 over 5 years

Funding 2008

2.3
$0
0 projects

Funding 2009

2.S.B
$1,370,107
5 projects

Funding 2010

2.SB
$1,096,678
5 projects

Funding 2011

2.S.B
$150,000
1 project

Funding 2012

2.S.B
$3,239,998
5 projects

Funding 2013

2.S.B
$2,859,333
7 projects

Funding Total

$8,716,116

IACC Strategic Plan Objectives

Identify ways to increase awareness among the autism spectrum community of the potential value of brain and tissue donation to further basic research by 2011.

IACC Recommended Budget: $1,400,000 over 2 years

Funding 2008

2.4
$0
0 projects

Funding 2009

2.S.C
$726,911
2 projects

Funding 2010

2.S.C
$17,000
1 project

Funding 2011

2.S.C
$22,000
1 project

Funding 2012

2.S.C
$90,120
1 project

Funding 2013

2.S.C
$674,525
5 projects

Funding Total

$1,530,556

IACC Strategic Plan Objectives

Launch three studies that target improved understanding of the underlying biological pathways of genetic conditions related to autism (e.g., Fragile X, Rett syndrome, tuberous sclerosis complex) and how these conditions inform risk assessment and individualized intervention by 2012.

IACC Recommended Budget: $9,000,000 over 5 years

Funding 2008

N/A

Funding 2009

2.S.D
$9,171,542
48 projects

Funding 2010

2.S.D
$13,162,905
57 projects

Funding 2011

2.S.D
$12,360,956
64 projects

Funding 2012

2.S.D
$18,452,242
83 projects

Funding 2013

2.S.D
$18,627,373
94 projects

Funding Total

$71,775,018

IACC Strategic Plan Objectives

Launch three studies that target the underlying biological mechanisms of co-occurring conditions with autism, including seizures/epilepsy, sleep disorders, wandering/elopement behavior, and familial autoimmune disorders, by 2012.

IACC Recommended Budget: $9,000,000 over 5 years

Funding 2008

N/A

Funding 2009

2.S.E
$3,893,300
11 projects

Funding 2010

2.S.E
$4,611,058
14 projects

Funding 2011

2.S.E
$4,807,760
23 projects

Funding 2012

2.S.E
$3,218,960
22 projects

Funding 2013

2.S.E
$4,848,555
23 projects

Funding Total

$21,379,633

IACC Strategic Plan Objectives

Launch two studies that focus on prospective characterization of children with reported regression to investigate potential risk factors by 2012.

IACC Recommended Budget: $4,500,000 over 5 years

Funding 2008

N/A

Funding 2009

2.S.F
$0
0 projects

Funding 2010

2.S.F
$401,595
2 projects

Funding 2011

2.S.F
$339,709
3 projects

Funding 2012

2.S.F
$251,830
2 projects

Funding 2013

2.S.F
$316,476
3 projects

Funding Total

$1,309,610

IACC Strategic Plan Objectives

Support five studies that associate specific genotypes with functional or structural phenotypes, including behavioral and medical phenotypes (e.g., nonverbal individuals with ASD and those with cognitive impairments) by 2015.

IACC Recommended Budget: $22,600,000 over 5 years

Funding 2008

N/A

Funding 2009

2.S.G
$5,903,875
21 projects

Funding 2010

2.S.G
$9,149,672
39 projects

Funding 2011

2.S.G
$11,105,408
45 projects

Funding 2012

2.S.G
$15,618,073
44 projects

Funding 2013

2.S.G
$12,646,192
49 projects

Funding Total

$54,423,220

IACC Strategic Plan Objectives

Complete a large-scale, multidisciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of individuals, with a special emphasis on females, youths, and adults with ASD, change over time as compared to typically developing people by 2020.

IACC Recommended Budget: $126,200,000 over 12 years

Funding 2008

2.5
$8,523,806
49 projects

Funding 2009

2.L.A
$2,721,384
6 projects

Funding 2010

2.L.A
$2,283,875
6 projects

Funding 2011

2.L.A
$972,559
5 projects

Funding 2012

2.L.A
$6,160,017
9 projects

Funding 2013

2.L.A
$5,201,378
7 projects

Funding Total

$25,863,019

IACC Strategic Plan Objectives

Launch at least three studies that evaluate the applicability of ASD phenotype and/or biological signature findings for performing diagnosis, risk assessment, or clinical intervention by 2015.

IACC Recommended Budget: $7,200,000 over 5 years

Funding 2008

N/A

Funding 2009

2.L.B
$1,532,262
16 projects

Funding 2010

2.L.B
$450,271
2 projects

Funding 2011

2.L.B
$324,241
4 projects

Funding 2012

2.L.B
$1,321,632
8 projects

Funding 2013

2.L.B
$3,096,581
13 projects

Funding Total

$6,724,987

IACC Strategic Plan Objectives

Not specific to any objective (Core/Other Activities)

Funding 2008

2. Core/Other Activities
$23,701,450
133 projects

Funding 2009

2. Core/Other Activities
$34,348,933
163 projects

Funding 2010

2. Core/Other Activities
$55,114,888
246 projects

Funding 2011

2. Core/Other Activities
$41,127,339
228 projects

Funding 2012

2. Core/Other Activities
$48,851,715
261 projects

Funding 2013

2. Core/Other Activities
$45,800,151
248 projects

Funding Total

$248,944,476

IACC Strategic Plan Objectives

Total funding for Question 2

Funding 2008

$40,621,403
202 projects

Funding 2009

$63,252,948
302 projects

Funding 2010

$91,260,349
409 projects

Funding 2011

$73,223,388
399 projects

Funding 2012

$100,254,414
461 projects

Funding 2013

$96,872,439
476 projects

Funding Total

$465,484,942*

Question 2 Multiyear Funding Table, see appendix for a color-coding key and further detail.

*This total reflects all funding for projects aligned to current objectives in the 2011 IACC Strategic Plan and incorporates funding for projects that may have been coded differently in previous versions of the Plan.

The totals reflect the funding and projects coded to this Question of the Strategic Plan in the particular year indicated at the top of the column. When reading each column vertically, please note that the projects and funding associated with each objective for 2008 may not add up to the total at the bottom of the column; this is due to revisions of the Strategic Plan that caused some objectives to be shifted to other Questions under the Plan. The projects and funding associated with these reclassified objectives are now reflected under the Question in which they appear in the 2011 Strategic Plan.

Table 5. Multiyear funding table for Question 2.


Strategic Plan Question 3 Risk Factors

Aspirational goal: Causes of ASD will be discovered that inform prognosis and treatments and lead to prevention/preemption of the challenges and disabilities of ASD.


Research Focus of Question 3

Question 3 (“What caused this to happen and can it be prevented?”) focuses on the risk factors associated with the development of ASD. Research related to Question 3 looks at the role of genetics, epigenetics, and the environ¬ment in the development of ASD, as well as the interactions between risk factors. Question 3 objectives address topics such as the need to develop improved approaches to study environmental exposures and gene-environment interactions, and to explore the potential roles of the microbiome and epigenetics on etiology. Also included are studies of risk factors and protective factors (factors that may protect an individual from developing ASD, even in the presence of other risk factors).

To describe the research funded in Question 3 in 2013, a word cloud was generated using the project titles listed under this question (Figure 26). The size of each word within the word cloud indicates the frequency of its use in project titles. The word cloud visually portrays the main research themes and topics that were funded in Question 3.

Word cloud representing themes in Question 3 project titles.

Figure 26. Word cloud representing themes in Question 3 project titles.

Analysis of 2013 Question 3 Portfolio

In 2013, research on risk factors associated with ASD (Question 3) accounted for $55.7 million (18%) of total ASD research funding and included 145 projects (11% of all projects). The largest funders of Question 3 are the National Institutes of Health, Simons Foundation, and the Centers for Disease Control and Prevention. Question 3 consists of 15 objectives, all but one of which experienced at least some level of activity in 2013 (the objective that had no activity was completed in a previous year). Figure 27 provides a detailed overview of each objective’s total funding in 2013 as well as the number of projects assigned to each objective.

Bar chart showing Question 3 project count and funding by objective.

Figure 27. Question 3 objectives broken down by their funding and project count.

Objective 3.L.D received the largest proportion of funding in 2013, which supports multiple sites within a large-scale study that collects data on environmental factors before and during pregnancy to assess any potential risk factors ($17.8 million, 32%). This was followed by the objective that had previously received the largest proportion of Question 3 funding in 2011 and 2012, 3.L.B ($12.3 million; 22%), which identifies genetic risk factors for ASD. All of the other objectives in Question 3 received a smaller portion of funding and number of projects. In addition, objective 3.S.G was completed by a workshop convened by the National Institute of Environmental Health Sciences (NIEHS) in 2011; objectives 3.S.B, 3.S.F, and 3.S.K did not receive any new funding in 2013 though they still had active projects. Table 6 lists all the objectives and their progress to date.

Question 3 Subcategory Analysis

Projects in Question 3, which made up nearly $55.7 million of total funding in 2013, were divided into four subcategories to determine the funding distribution across the research areas relating to understanding and identifying risk factors for ASD. These subcategories include: Environmental risk factors; Epigenetics; Gene-Environment studies; and Genetic risk factors (Figure 28).

Pie chart showing Question 3 subcategories.

Figure 28. Question 3 funding by subcategory in 2013.

In 2013, investigating the role of environmental risk factors, genetic susceptibility, and/or the context of human physiology (Gene-Environment) accounted for the majority of research funding (43%). Studies focused on Genetic risk factors were the second largest research investment (37%). Projects considering only Environmental risk factors received 11% of funding for projects within Question 3. Projects on Epigenetics received 9% of funding, which included studies investigating DNA modifications and exploring altered gene expression due to environmental influences.

Progress made on Question 3 from 2008-2013

Figure 29 shows the trend in Question 3 funding over time. While research on risk factors remained supported at high levels over the six-year period compared to some of the other question areas, the overall trend showed an initial increase followed by a gradual decrease and then a general leveling off of the annual funding level from 2011-2013.

Line graph showing Question 3 funding by strategic plan question.

Figure 29. Question 3 ASD research funding from 2008-2013. Funding for Question 3 initially showed a steady decrease, and then leveled off, over the six-year span.

Progress Made on Question 3 Objectives From 2008-2013

As of 2013, nine of Question 3’s objectives were considered completed, while the remaining six were partially completed based on the total recommended budget levels (Figure 30). Of the nine completed objectives, five changed from an overall "partially completed" status as of 2012 to a "completed" status as of 2013. The objectives that have been newly completed in 2013 include: 3.S.C, which expands existing large case-control and other studies to enhance targeted gene-environment research; 3.S.D, which enhances existing case-control studies to enroll racially and ethnically diverse populations affected by ASD; 3.S.H, which includes studies to inform understanding of environmental risk factors for ASD in pregnancy and the early postnatal period; 3.S.I, which includes studies on microbiome differences between individuals with ASD; and 3.S.J, which includes studies focused on the role of epigenetics in the etiology of ASD. Table 6 provides a snapshot of progress made on all 15 of the research objectives within Question 3 over the period from 2008-2013.

Stop light with red = 0, yellow = 6, and green = 9, showing progress of 15 question 3 objectives

Figure 30. Overall status of progress for the 15 Question 3 objectives.


Question 3: What Caused This To Happen And Can It Be Prevented?

IACC Strategic Plan Objectives Funding
Year 2008 2009 2010 2011 2012 2013 Total

IACC Strategic Plan Objectives

Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011. Studies should investigate factors contributing to phenotypic variation across individuals who share an identified genetic variant and stratify subjects according to behavioral, cognitive, and clinical features.

IACC Recommended Budget: $43,700,000 over 4 years

Funding 2008

3.2
$4,065,392
14 projects

Funding 2009

3.S.A
$13,926,663
11 projects

Funding 2010

3.S.A
$16,688,932
14 projects

Funding 2011

3.S.A
$2,207,214
7 projects

Funding 2012

3.S.A
$1,699,432
6 projects

Funding 2013

3.S.A
$4,965,929
11 projects

Funding Total

$43,553,562

IACC Strategic Plan Objectives

Within the highest-priority categories of exposures for ASD, identify and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011.

IACC Recommended Budget: $3,500,000 over 3 years

Funding 2008

3.3
$713,227
4 projects

Funding 2009

3.S.B
$0
0 projects

Funding 2010

3.SB
$0
0 projects

Funding 2011

3.S.B
$0
0 projects

Funding 2012

3.S.B
$100,000
1 project

Funding 2013

3.S.B
$0
1 project

Funding Total

$813,227

IACC Strategic Plan Objectives

Initiate efforts to expand existing large casecontrol and other studies to enhance capabilities for targeted gene-environment research by 2011.

IACC Recommended Budget: $27,800,000 over 5 years

Funding 2008

3.4
$4,703,867
4 projects

Funding 2009

3.S.C
$8,033,454
9 projects

Funding 2010

3.S.C
$4,824,779
8 projects

Funding 2011

3.S.C
$5,714,408
10 projects

Funding 2012

3.S.C
$3,626,803
9 projects

Funding 2013

3.S.C
$4,680,036
6 projects

Funding Total

$31,583,347

IACC Strategic Plan Objectives

Enhance existing case-control studies to enroll racially and ethnically diverse populations affected by ASD by 2011.

IACC Recommended Budget: $3,300,000 over 5 years

Funding 2008

3.5
$84,628
2 projects

Funding 2009

3.S.D
$103,827
3 projects

Funding 2010

3.S.D
$0
0 projects

Funding 2011

3.S.D
$0
0 projects

Funding 2012

3.S.D
$0
0 projects

Funding 2013

3.S.D
$3,168,451
2 projects

Funding Total

$3,356,906

IACC Strategic Plan Objectives

Support at least two studies to determine if there are subpopulations that are more susceptible to environmental exposures (e.g., immune challenges related to infections, vaccinations, or underlying autoimmune problems) by 2012.

IACC Recommended Budget: $8,000,000 over 2 years

Funding 2008

N/A

Funding 2009

3.S.E
$1,739,200
13 projects

Funding 2010

3.S.E
$1,162,679
10 projects

Funding 2011

3.S.E
$419,215
5 projects

Funding 2012

3.S.E
$287,218
5 projects

Funding 2013

3.S.E
$282,300
7 projects

Funding Total

$3,890,612

IACC Strategic Plan Objectives

Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” as potential causes of ASD by 2012.

IACC Recommended Budget: $56,000,000 over 2 years

Funding 2008

3.1
$7,600,673
19 projects

Funding 2009

3.S.F
$2,952,960
14 projects

Funding 2010

3.S.F
$166,362
5 projects

Funding 2011

3.S.F
$0
3 projects

Funding 2012

3.S.F
$75,000
1 project

Funding 2013

3.S.F
$0
1 project

Funding Total

$10,794,995

IACC Strategic Plan Objectives

Convene a workshop that explores the usefulness of bioinformatic approaches to identify environmental risks for ASD by 2011.

IACC Recommended Budget: $35,000 over 1 year
*This objective was completed in 2011

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

3.S.G
$0
0 projects

Funding 2011

3.S.G
$46,991
1 project

Funding 2012

3.S.G
$0
0 projects

Funding 2013

3.S.G
$0
0 projects

Funding Total

$46,991

IACC Strategic Plan Objectives

Support at least three studies of special populations or use existing databases to inform our understanding of environmental risk factors for ASD in pregnancy and the early postnatal period by 2012. Such studies could include:

  • Comparisons of populations differing in geography, gender, ethnic background, exposure history (e.g., prematurity, maternal infection, nutritional deficiencies, toxins), and migration patterns; and
  • Comparisons of phenotype (e.g., cytokine profiles), in children with and without a history of autistic regression, adverse events following immunization (such as fever and seizures), and mitochondrial impairment. These studies may also include comparisons of phenotype between children with regressive ASD and their siblings.

Emphasis on environmental factors that influence prenatal and early postnatal development is particularly of high priority. Epidemiological studies should pay special attention to include racially and ethnically diverse populations.

IACC Recommended Budget: $12,000,000 over 5 years

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

3.S.H
$1,527,866
13 projects

Funding 2011

3.S.H
$4,657,095
16 projects

Funding 2012

3.S.H
$4,096,317
13 projects

Funding 2013

3.S.H
$5,137,711
12 projects

Funding Total

$15,418,989

IACC Strategic Plan Objectives

Support at least two studies that examine potential differences in the microbiome of individuals with ASD versus comparison groups by 2012.

IACC Recommended Budget: $1,000,000 over 2 years

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

3.S.I
$53,960
3 projects

Funding 2011

3.S.I
$439,971
4 projects

Funding 2012

3.S.I
$255,332
6 projects

Funding 2013

3.S.I
$960,391
8 projects

Funding Total

$1,709,654

IACC Strategic Plan Objectives

Support at least three studies that focus on the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes via epigenetic mechanisms to alter gene expression, by 2012.

IACC Recommended Budget: $20,000,000 over 5 years

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

3.S.J
$5,072,389
15 projects

Funding 2011

3.S.J
$5,341,237
19 projects

Funding 2012

3.S.J
$6,122,724
22 projects

Funding 2013

3.S.J
$4,972,257
19 projects

Funding Total

$21,508,607

IACC Strategic Plan Objectives

Support two studies and a workshop that facilitate the development of vertebrate and invertebrate model systems for the exploration of environmental risks and their interaction with gender and genetic susceptibilities for ASD by 2012.

IACC Recommended Budget: $1,535,000 over 3 years

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

3.S.K
$733,922
5 projects

Funding 2011

3.S.K
$463,841
3 projects

Funding 2012

3.S.K
$90,000
3 projects

Funding 2012

3.S.K
$0
3 projects

Funding Total

$1,287,763

IACC Strategic Plan Objectives

Conduct a multi-site study of the subsequent pregnancies of 1,000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014.

IACC Recommended Budget: $11,100,000 over 5 years

Funding 2008

3.7
$2,742,999
1 project

Funding 2009

3.L.A
$3,740,812
2 projects

Funding 2010

3.L.A
$2,971,093
2 projects

Funding 2011

3.L.A
$2,864,377
1 project

Funding 2012

3.L.A
$2,875,202
2 projects

Funding 2013

3.L.A
$411,571
2 projects

Funding Total

$15,606,054

IACC Strategic Plan Objectives

Identify genetic risk factors in at least 50% of people with ASD by 2014.

IACC Recommended Budget: $33,900,000 over 6 years

Funding 2008

3.8
$37,043,410
83 projects

Funding 2009

3.LB
$49,905,587
79 projects

Funding 2010

3.L.B
$34,432,884
60 projects

Funding 2011

3.L.B
$25,383,346
59 projects

Funding 2012

3.L.B
$23,041,231
74 projects

Funding 2013

3.L.B
$12,260,187
51 projects

Funding Total

$182,066,645

IACC Strategic Plan Objectives

Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the prenatal and early postnatal period of development by 2015.

IACC Recommended Budget: $25,100,000 over 7 years

Funding 2008

3.6
$1,803,628
13 projects

Funding 2009

3.L.C
$1,992,228
10 projects

Funding 2010

3.L.C
$820,320
10 projects

Funding 2011

3.LC
$379,913
5 projects

Funding 2012

3.L.C
$353,000
5 projects

Funding 2013

3.L.C
$490,000
4 projects

Funding Total

$5,839,089

IACC Strategic Plan Objectives

Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including United States populations, to collect data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed) to analyze targets for potential gene/environment interactions by 2015.

IACC Recommended Budget: $44,400,000 over 5 years

Funding 2008

3.9
$17,297,788
29 projects

Funding 2009

3.L.D
$9,135,505
12 projects

Funding 2010

3.L.D
$11,464,011
10 projects

Funding 2011

3.L.D
$11,567,250
10 projects

Funding 2012

3.L.D
$13,549,160
12 projects

Funding 2013

3.L.D
$17,799,693
15 projects

Funding Total

$80,813,407

IACC Strategic Plan Objectives

Not specific to any objective (Core/Other Activities)

Funding 2008

3. Core/Other Activities
$6,791,008
52 projects

Funding 2009

3. Core/Other Activities
$8,512,980
39 projects

Funding 2010

3. Core/Other Activities
$1,312,450
7 projects

Funding 2011

3. Core/Other Activities
$724,770
5 projects

Funding 2012

3. Core/Other Activities
$315,607
3 projects

Funding 2013

3. Core/Other Activities
$537,826
3 projects

Funding Total

$18,194,641

IACC Strategic Plan Objectives

Total funding for Question 3

Funding 2008

$82,846,620
221 projects

Funding 2009

$100,043,216
192 projects

Funding 2010

$81,231,647
162 projects

Funding 2011

$60,209,628
148 projects

Funding 2012

$56,487,026
162 projects

Funding 2013

$55,666,352
145 projects

Funding Total

$436,484,489

Question 3: Multiyear Funding Table, see Appendix C for a color-coding key and further details.

Table 6. Multiyear funding table for Question 3.


Strategic Plan Question 4 Treatments and Interventions

Aspirational goal: Interventions will be developed that are effective for reducing both core and associated symptoms, for building adaptive skills, and for maximizing quality of life and health for people with ASD.


Research Focus of Question 4

Question 4 asks “Which treatments and interventions will help?” and covers a range of intervention approaches currently being considered, including pharmacological, behavioral, educational, occupational, technology-based, and alternative/complementary/integrative medicine approaches. Research in this field encompasses the development of new treatments using model systems and small-scale experiments as well as full-scale clinical trials. Question 4 also includes studies to assess the safety and effectiveness of treatments already in use in the community.

A word cloud was created to describe the research funded in Question 4 using the project titles listed under the question research area (Figure 31). The size of each word within the word cloud indicates the frequency of its use in project titles. The word cloud visually portrays the main research themes and topics that were funded in Question 4.

Word cloud representing themes in Question 4 project titles.

Figure 31. Word cloud representing themes in Question 4 project titles.

Analysis of 2013 Question 4 Portfolio

Research focused on interventions and treatments (Question 4) received $58.1 million (19%) of total ASD funding in 2013. The number of projects assigned to Question 4 totaled 262 projects, which was 20% of all projects included in the portfolio. A large number of agencies and organizations invest in treatments and interventions; however, the three largest funders are the National Institutes of Health, Department of Education, and Simons Foundation. Progress was made on all 12 of the Question 4 objectives in 2013. Figure 32 provides a detailed overview of each objective’s total funding in 2013 as well as the number of projects assigned to each objective.

As in previous years, the Question 4 objective receiving the most funding focuses on the development of model systems targeting areas for new interventions (4.S.B; $14.3 million, 25%). The second largest funded objective was 4.L.D which supports community-based studies assessing the effectiveness of interventions and services ($11.7 million; 20%). Objective 4.S.D followed with $10.4 million (18%) and supports investments in randomized controlled trials for early intervention. All other objectives received less funding in 2013, and 10% of Question 4 funding went to projects categorized as Core/Other. Table 7 lists all the objectives and their progress to date.

2013 Bar Chart of Question 4 project count and funding by objective

Figure 32. Question 4 objectives broken down by their funding and project count.

Question 4 Subcategory Analysis

Question 4 represents research on a wide array of different approaches to treatments and interventions for ASD, ranging from medications to alleviate core and co-occurring symptoms, to behavioral therapies and technologies to improve communication, socialization, life skills, and learning. Projects under Question 4 accounted for approximately $58.1 million of total funding in 2013 and were broken down into these seven subcategories: Behavioral; Complementary, dietary, and alternative; Educational; Medical/Pharmacologic; Model systems/Therapeutic targets; Occupational, physical, and sensory-based; and Technology-based interventions and supports (Figure 33).

The subcategories for Question 4 (Treatments and Interventions) illustrate the many approaches to treatments and interventions supported by autism research funders. In 2013, the largest amount of funding supported projects to develop Behavioral interventions (35%), including applied behavior analysis (ABA), cognitive therapy, and social skills training. Research on Model systems/Therapeutic targets (25%) followed, focusing on early development of animal and cellular models that mimic characteristics of ASD to test experimental therapies. Educational (classroom-based) interventions received 14% of funding, Medical/Pharmacologic interventions received 13% of funding, and Technology-based interventions and supports received 7% of funding. The subcategories with the smallest amounts of funding included Occupational, physical, and sensory-based (4%) and Complementary, dietary, and alternative (2%) interventions.

2013 Bar Chart of Question 4 project count and funding by objective

Figure 33. Question 4 funding by subcategory in 2013.

Progress Made on Question 4 From 2008-2013

The trend in annual Question 4 funding over time is shown in Figure 34. Overall, research funding focused on treatments and interventions maintained a consistently high level over the six-year time span. In the most recent years, Question 4 has had one of the largest proportions of funding compared to other Question areas.

2013 Line Chart of Question 4 funding by Strategic Plan Funding

Figure 34. Question 4 ASD research funding from 2008-2013. Funding for Question 4 remained primarily flat, but relatively robust, over the six-year span.

Progress Made on Question 4 Objectives From 2008-2013

Based on the cumulative funding over six years, four objectives were considered completed, while the remaining eight objectives showed partial progress as of 2013 (Figure 35). Although all of the Question 4 objectives experienced some degree of growth in 2013, this is the same overall status across objectives that was reported for this Question in 2012. Table 7 provides a snapshot of progress made on all 12 of the research objectives within Question 4 over the period from 2008-2013.

Stop light with red = 0, yellow = 8, and green = 4, showing progress of 12 question 4 objectives

Figure 35. Overall status of progress for the 12 Question 4 objectives.

Question 4: Which Treatments And Interventions Will Help?

IACC Strategic Plan Objectives Funding
Year 2008 2009 2010 2011 2012 2013 Total

IACC Strategic Plan Objectives

Support at least three randomized controlled trials that address co-occurring medical conditions associated with ASD by 2010.

IACC Recommended Budget: $13,400,000 over 3 years

Funding 2008

4.2
$4,583,171
5 projects

Funding 2009

4.S.A
$4,733,841
6 projects

Funding 2010

4.S.A
$3,787,700
4 projects

Funding 2011

4.S.A
$1,826,542
4 projects

Funding 2012

4.S.A
$2,174,124
3 projects

Funding 2013

4.S.A
$1,687,680
6 projects

Funding Total

$18,793,058

IACC Strategic Plan Objectives

Standardize and validate at least 20 model systems (e.g., cellular and/or animal) that replicate features of ASD and will allow identification of specific molecular targets or neural circuits amenable to existing or new interventions by 2012.

IACC Recommended Budget: $75,000,000 over 5 years

Funding 2008

4.S.B
$15,879,827
42 projects

Funding 2009

4.S.B
$20,162,709
70 projects

Funding 2010

4.SB
$23,229,501
92 projects

Funding 2011

4.S.B
$21,606,118
89 projects

Funding 2012

4.S.B
$21,232,514
94 projects

Funding 2013

4.S.B
$14,344,873
86 projects

Funding Total

$116,455,542

IACC Strategic Plan Objectives

Test safety and efficacy of at least five widely used interventions (e.g., nutrition, medications, assisted technologies, sensory integration, medical procedures) that have not been rigorously studied for use in ASD by 2012.

IACC Recommended Budget: $27,800,000 over 5 years

Funding 2008

4.6
$641,285
8 projects

Funding 2009

4.S.C
$3,252,941
29 projects

Funding 2010

4.S.C
$1,509,745
18 projects

Funding 2011

4.S.C
$2,254,724
18 projects

Funding 2012

4.S.C
$1,288,226
17 projects

Funding 2013

4.S.C
$1,863,225
22 projects

Funding Total

$10,810,146

IACC Strategic Plan Objectives

Complete two multi-site randomized controlled trials of comprehensive early intervention that address core symptoms, family functioning and community involvement by 2013.

IACC Recommended Budget: $16,700,000 over 5 years

Funding 2008

4.7
$4,236,869
5 projects

Funding 2009

4.S.D
$7,540,613
9 projects

Funding 2010

4.S.D
$10,306,148
18 projects

Funding 2011

4.S.D
$11,156,647
20 projects

Funding 2012

4.S.D
$8,848,130
21 projects

Funding 2013

4.S.D
$10,426,942
21 projects

Funding Total

$52,515,349

IACC Strategic Plan Objectives

Convene a workshop to advance the understanding of clinical subtypes and treatment personalization (i.e., what are the core symptoms to target for treatment studies) by 2011.

IACC Recommended Budget: $50,000

*This objective was partially completed in 2011

Funding 2008

N/A

Funding 2009

4.S.E
$0
0 projects

Funding 2010

4.S.E
$0
0 projects

Funding 2011

4.S.E*
$26,000
0 projects

Funding 2012

4.S.E*
$0
0 projects

Funding 2013

4.S.E*
$5,000
1 project

Funding Total

$31,000

IACC Strategic Plan Objectives

Launch randomized controlled trials of interventions including biological signatures and other measures to predict response, and monitor quality of life and functional outcomes in each of the following groups:

  • Five trials in infants and toddlers by 2013. IACC Recommended Budget: $30,000,000 over 5 years (revised in 2010)
  • Three trials in school-aged children and/or adolescents by 2013. IACC Recommended Budget: $18,000,000 over 5 years (revised in 2010)
  • Three trials in adults by 2014. IACC Recommended Budget: $18,000,000 over 5 years

Total IACC Recommended Budget: $66,000,000 over 5 years

Funding 2008

4.3 & 4.4
$12,109,516
16 projects
& 30 projects

Funding 2009

4.S.F
$9,791,270
42 projects

Funding 2010

4.S.F
$7,575,212
30 projects

Funding 2011

4.S.F
$5,445,599
23 projects

Funding 2012

4.S.F
$6,255,438
21 projects

Funding 2013

4.S.F
$2,444,294
13 projects

Funding Total

$43,621,329

IACC Strategic Plan Objectives

Support at least five studies on interventions for nonverbal individuals with ASD by 2012. Such studies may include:

  • Projects examining service-provision models that enhance access to augmentative and alternative communication (AAC) supports in both classroom and adult service-provision settings, such as residential service-provision and the impact of such access on quality of life, communication, and behavior;
  • Studies of novel treatment approaches that facilitate communication skills in individuals who are nonverbal, including the components of effective AAC approaches for specific subpopulations of people with ASD; and
  • Studies assessing access and use of AAC for children and adults with ASD who have limited or partially limited speech and the impact on functional outcomes and quality of life.

IACC Recommended Budget: $3,000,000 over 2 years

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

4.S.G
$1,907,721
11 projects

Funding 2011

4.S.G
$2,830,851
13 projects

Funding 2012

4.S.G
$4,991,831
17 projects

Funding 2013

4.S.G
$3,904,625
9 projects

Funding Total

$13,635,028

IACC Strategic Plan Objectives

Support at least two studies that focus on research on health promotion and prevention of secondary conditions in people with ASD by 2012. Secondary conditions of interest include weight issues and obesity, injury, and co-occurring psychiatric and medical conditions.

IACC Recommended Budget: $5,000,000 over 3 years

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

4.S.H
$225,877
2 projects

Funding 2011

4.S.H
$222,265
1 project

Funding 2012

4.S.H
$956,827
4 projects

Funding 2013

4.S.H
$724,478
3 projects

Funding Total

$2,129,447

IACC Strategic Plan Objectives

Complete at least three randomized controlled trials on medications targeting core symptoms in people with ASD of all ages by 2014.

IACC Recommended Budget: $22,200,000 over 5 years

Funding 2008

4.8
$1,380,376
12 projects

Funding 2009

4.L.A
$1,168,146
10 projects

Funding 2010

4.L.A
$1,924,932
11 projects

Funding 2011

4.L.A
$1,527,858
12 projects

Funding 2012

4.L.A
$3,713,783
14 projects

Funding 2013

4.L.A
$4,189,239
12 projects

Funding Total

$13,904,334

IACC Strategic Plan Objectives

Develop interventions for siblings of people with ASD with the goal of reducing the risk of recurrence by at least 30% by 2014.

IACC Recommended Budget: $6,700,000 over 5 years

Funding 2008

4.9
$14,256
1 project

Funding 2009

4.L.B
$132,263
2 projects

Funding 2010

4.L.B
$307,349
3 projects

Funding 2011

4.L.B
$14,256
2 projects

Funding 2012

4.L.B
$362,987
2 projects

Funding 2013

4.L.B
$1,180,706
2 projects

Funding Total

$1,180,706

IACC Strategic Plan Objectives

Conduct at least one study to evaluate the safety and effectiveness of medications commonly used in the treatment of co-occurring conditions or specific behavioral issues in people with ASD by 2015.

IACC Recommended Budget: $10,000,000 over 5 years

Funding 2008

N/A

Funding 2009

4.L.C
$1,061,222
7 projects

Funding 2010

4.L.C
$2,302,240
7 projects

Funding 2011

4.L.C
$2,834,887
8 projects

Funding 2012

4.L.C
$277,072
3 projects

Funding 2013

4.L.C
$665,668
7 projects

Funding Total

$7,141,089

IACC Strategic Plan Objectives

Support at least five community-based studies that assess the effectiveness of interventions and services in broader community settings by 2015. Such studies may include comparative effectiveness research studies that assess the relative effectiveness of:

  • Different and/or combined medical, pharmacological, nutritional, behavioral, service-provision, and parent- or caregiver-implemented treatments;
  • Scalable early intervention programs for implementation in underserved, low-resource, and low-literacy populations; and
  • Studies of widely used community intervention models for which extensive published data are not available.

Outcome measures should include assessment of potential harm as a result of autism treatments, as well as positive outcomes.

IACC Recommended Budget: $37,500,000 over 5 years

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

4.L.D.
$8,765,832
32 projects

Funding 2011

4.L.D.
$6,296,024
32 projects

Funding 2012

4.L.D.
$10,186,313
45 projects

Funding 2013

4.L.D.
$11,745,499
50 projects

Funding Total

$36,984,668

IACC Strategic Plan Objectives

Not specific to any objective (Core/Other Activities)

Funding 2008

4. Core/Other Activities
$14,075,905
54 projects

Funding 2009

4. Core/Other Activities
$15,560,011
59 projects

Funding 2010

4. Core/Other Activities
$6,290,634
49 projects

Funding 2011

4. Core/Other Activities
$4,777,350
37 projects

Funding 2012

4. Core/Other Activities
$3,862,655
29 projects

Funding 2013

4. Core/Other Activities
$5,714,722
30 projects

Funding Total

$50,281,277

IACC Strategic Plan Objectives

Total funding for Question 3

Funding 2008

$53,968,973
178 projects

Funding 2009

$63,403,016
234 projects

Funding 2010

$68,123,891
277 projects

Funding 2011

$60,819,121
260 projects

Funding 2012

$64,149,900
270 projects

Funding 2013

$58,065,840
262 projects

Funding Total

$368,530,738*

Question 4 Multiyear Funding Table, see appendix for a color-coding key and further details.

*This total reflects all funding for projects aligned to current objectives in the 2011 IACC Strategic Plan and incorporates funding for projects that may have been coded differently in previous versions of the Plan.

The totals reflect the funding and projects coded to this Question of the Strategic Plan in the particular year indicated at the top of the column. When reading each column vertically, please note that the projects and funding associated with each objective for 2008 may not add up to the total at the bottom of the column; this is due to revisions of the Strategic Plan that caused some objectives to be shifted to other Questions under the Plan. The projects and funding associated with these reclassified objectives are now reflected under the Question in which they appear in the 2011 Strategic Plan.

Table 7. Multiyear funding table for Question 4.


Strategic Plan Question 5 Services

Aspirational goal: Communities will access and implement necessary high-quality, evidence-based services and supports that maximize quality of life and health across the lifespan for all people with ASD


Research Focus of Question 5

Question 5 (“Where can I turn for services?”) focuses on services and supports for people with ASD. Objec-tives address issues including access to services for both individuals with ASD and their families, impact of self-directed care, coordination among State and local agencies’ community-based supports, and the assessment of the health, safety, and mortality of people with ASD. Question 5 also includes research to develop and evaluate the training of service providers (pediatricians, teachers, social workers, etc.), and improve the efficacy, cost-effectiveness, and dissemination of evidence-based practices.

In an effort to provide a visual representation of the research funded in Question 5 in 2013, a word cloud was generated using the project titles listed under this question (Figure 36). The size of each word within the word cloud indicates the frequency of its use in project titles. The word cloud visually portrays the main research themes and topics that were funded in Question 5.

Word cloud representing themes in Question 5 project titles.

Figure 36. Word cloud representing themes in Question 5 project titles.

Analysis of 2013 Question 5 Portfolio

Projects assigned to Question 5 comprised 7% ($20.0 million) of the total ASD research supported in 2013. Question 5 consisted of 125 projects, which was 10% of the total number of projects. The largest funders of Question 5 are the Department of Education, the National Institutes of Health, and the Centers for Disease Control and Prevention. Of the nine Question 5 objectives, three objectives achieved their recommended annual funding target, four partially saw activity, and two objectives (5.S.B and 5.L.D) had no active projects or funding in this year. Figure 37 provides a detailed overview of each objective’s total funding in 2013 as well as the number of projects assigned to each objective.

The majority of projects that were categorized under this question did not fit into any of the specific Question 5 objectives and were assigned as Core/Other ($7.3 million, 36%). The next largest portion of funding went to 5.L.A, which supports projects improving dissemination, implementation, and sustainability of evidenced-based interventions ($6.7 million, 33%). Objective 5.L.C, research focused on the evaluation of new and existing training of service providers, followed with $3.4 million and 17% of Question 5 funding in 2013. Objectives 5.S.B and 5.L.D were not funded in 2013, but have received funding in previous years. Table 8 lists all the objectives and their progress to date.

2013 Bar Chart of Question 5 funding by Objectives

Figure 37. Question 5 objectives broken down by their funding and project count.

Question 5 Subcategory Analysis

Projects within Question 5, which accounted for approximately $20.0 million in 2013, have been categorized into five subcategories which reflect the general scope of research on services and supports: Community inclusion programs; Efficacious and cost-effective service delivery; Family well-being and safety; development and evaluation of Practitioner training; and Services utilization and access (Figure 38).

In 2013, research falling under the development and evaluation of Practitioner training subcategory accounted for almost two thirds (64%) of the funding for Question 5. Projects related to research on Efficacious and cost-effective service delivery, which covers research projects that assess current service delivery models as well as developing new and efficient ways of providing services, followed with 18% of the Question 5 funding. Research focused on disparities and potential barriers to access are covered in Services utilization and access and accounted for 10%. Family well-being and safety research projects received 6% of funding, and projects relating to Community inclusion programs received 2% of Question 5 funding in 2013.

2013 Question 5 funding by subcategory

Figure 38. Question 5 funding by subcategory in 2013.

Progress Made on Question from 2008-2013

Figure 39 shows the trend in Question 5 funding over time using the adjusted funding total from Table 8. The adjusted funding (solid line) reflects funding for projects aligned to objectives in the 2011 IACC Strategic Plan that may have been coded differently under previous versions of the plan. Research related to Question 5 was funded at relatively low levels when compared to other question areas. Funding for projects within Question 5 appeared to decrease slightly after 2010.

2013 Question 5 funding by strategic plan question

Figure 39. Question 5 ASD research funding from 2008-2013. Funding for Question 5 remained relatively low over the six-year span and decreased slightly after 2010.

As mentioned in the 2011-2012 Portfolio Analysis Report, adjustments in reporting were made to only report autism-specific and research-related portions of larger projects. An estimated line for Question 5 funding in 2010 (dashed line) is included in the graph to enable a more accurate comparison among years. To calculate the estimated line for 2010, the same methodology for the prorated rates used in 2011 to 2013 was applied. (The projects that included practitioner training were prorated starting in 2011 to include only the portion of funding pertaining to development and evaluation of training, and not portions related to delivery of training). When these adjustments are made to the 2010 data set, the change from 2009 to 2010, and 2010 to 2011, appear to be less significant. Overall, when comparing 2008 funding for Question 5 with 2013 funding the general trend is upward, though Question 5 also gained several new objectives from the latest version of the Strategic Plan, which also contributed to the rise.

Progress Made On Question 5 Objectives From 2008-2013

An assessment of progress made on Question 5 objectives over the six-year funding period shows that three objectives were considered completed as of 2013. The other six objectives achieved partial progress toward their overall recommended budgeted goals since 2008 (Figure 40), despite the fact that two of these objectives did not see activity in 2013 specifically. Although many of the Question 5 objectives experienced growth in 2013, the overall status of Question 5 objectives did not change since 2012. Table 8 provides a snapshot of progress made on all nine of the research objectives within Question 5 over the period from 2008-2013.

Stop light with red = 0, yellow = 6, and green = 3, showing progress of 9 question 5 objectives

Figure 40. Overall status of progress for the nine Question 5 objectives.

Question 5: Where Can I Turn For Services?

IACC Strategic Plan Objectives Funding
Year 2008 2009 2010 2011 2012 2013 Total

IACC Strategic Plan Objectives

Support two studies that assess how variations in and access to services affect family functioning in diverse populations, including underserved populations, by 2012.

IACC Recommended Budget: $1,000,000 over 3 years

Funding 2008

5.2
$0
0 projects

Funding 2009

5.S.A
$499,999
1 project

Funding 2010

5.S.A
$2,061,834
9 projects

Funding 2011

5.S.A
$1,351,793
8 projects

Funding 2012

5.S.A
$1,364,087
6 projects

Funding 2013

5.S.A
$1,090,183
6 projects

Funding Total

$6,367,896

IACC Strategic Plan Objectives

Conduct one study to examine how self-directed community-based services and supports impact children, youth, and adults with ASD across the spectrum by 2014.

IACC Recommended Budget: $6,000,000 over 3 years

Funding 2008

N/A

Funding 2009

5.S.B
$446,340
6 projects

Funding 2010

5.S.B
$291,635
6 projects

Funding 2011

5.S.B
$0
1 project

Funding 2012

5.S.B
$0
0 projects

Funding 2013

5.S.B
$0
0 projects

Funding Total

$737,975

IACC Strategic Plan Objectives

Implement and evaluate five models of policy and practice-level coordination among State and local agencies to provide integrated and comprehensive community-based supports and services that enhance access to services and supports, self-determination, economic self-sufficiency, and quality of life for people with ASD across the spectrum and their families, (which may include access to augmentative and alternative communication [AAC] technology), with at least one project aimed at the needs of transitioning youth and at least one study to evaluate a model of policy and practice-level coordination among State and local mental health agencies serving people with ASD, by 2015.

IACC Recommended Budget: $25,000,000 over 5 years

Funding 2008

N/A

Funding 2009

5.S.C
$0
0 projects

Funding 2010

5.S.C
$4,225,315
15 projects

Funding 2011

5.S.C
$600,000
3 projects

Funding 2012

5.S.C
$600,000
2 projects

Funding 2013

5.S.C
$340,000
2 projects

Funding Total

$5,765,315

IACC Strategic Plan Objectives

Support two studies to examine health, safety, and mortality issues for people with ASD by 2012.

IACC Recommended Budget: $4,500,000 over 3 years

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

5.S.D
$159,135
3 projects

Funding 2011

5.S.D
$0
1 project

Funding 2012

5.S.D
$5,000
1 project

Funding 2013

5.S.D
$0
1 project

Funding Total

$164,135

IACC Strategic Plan Objectives

Test four methods to improve dissemination, implementation, and sustainability of evidence-based interventions, services, and supports in diverse community settings by 2013.

IACC Recommended Budget: $7,000,000 over 5 years

Funding 2008

5.4
$2,596,838
3 projects

Funding 2009

5.L.A
$5,460,809
10 projects

Funding 2010

5.L.A
$7,747,912
22 projects

Funding 2011

5.L.A
$5,840,814
24 projects

Funding 2012

5.L.A
$7,210,677
32 projects

Funding 2013

5.L.A
$6,659,367
26 projects

Funding Total

$35,516,417

IACC Strategic Plan Objectives

Test the efficacy and cost-effectiveness of at least four evidence-based services and supports for people with ASD across the spectrum and of all ages living in community settings by 2015.

IACC Recommended Budget: $16,700,000 over 5 years

Funding 2008

5.3
$0
0 projects

Funding 2009

5.L.B
$103,722
5 projects

Funding 2010

5.L.B
$0
0 projects

Funding 2011

5.L.B
$0
0 projects

Funding 2012

5.L.B
$499,995
1 project

Funding 2013

5.L.B
$771,534
2 projects

Funding Total

$1,375,251

IACC Strategic Plan Objectives

Evaluate new and existing pre-service and in-service training to increase skill levels in service providers, including direct support workers, parents and legal guardians, education staff, and public service workers, to benefit the spectrum of people with ASD and to promote interdisciplinary practice by 2015.

IACC Recommended Budget: $8,000,000 over 5 years

Funding 2008

6.3
$30,000
1 project

Funding 2009

5.L.C
$132,494
6 projects

Funding 2010

5.L.C
$36,433,257
83 projects

Funding 2011

5.L.C
$6,048,734
30 projects

Funding 2012

5.L.C
$3,724,262
29 projects

Funding 2013

5.L.C
$3,425,120
29 projects

Funding Total

$49,793,867

IACC Strategic Plan Objectives

Evaluate at least two strategies or programs to increase the health and safety of people with ASD that simultaneously consider principles of selfdetermination and personal autonomy by 2015.

IACC Recommended Budget: $2,700,000 over 3 years

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

5.L.D
$296,840
5 projects

Funding 2011

5.L.D
$279,999
4 projects

Funding 2012

5.L.D
$54,999
3 projects

Funding 2013

5.L.D
$0
0 projects

Funding Total

$631,838

IACC Strategic Plan Objectives

Support three studies of dental health issues for people with ASD by 2015. This should include:

  • One study on the cost-benefit of providing comprehensive dental services, including routine, non-emergency medical and surgical dental services, denture coverage, and sedation dentistry to adults with ASD as compared to emergency and/or no treatment.
  • One study focusing on the provision of accessible, person-centered, equitable, effective, safe, and efficient dental services to people with ASD.
  • One study evaluating pre-service and in-service training program to increase skill levels in oral health professionals to benefit people with ASD and promote interdisciplinary practice.

IACC Recommended Budget: $2,700,000 over 3 years

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

5.L.E
$196,457
2 projects

Funding 2011

5.L.E
$443,860
3 projects

Funding 2012

5.L.E
$307,784
2 projects

Funding 2013

5.L.E
$510,972
2 projects

Funding Total

$1,459,073

IACC Strategic Plan Objectives

Not specific to any objective (Core/Other Activities)

Funding 2008

5. Core/Other Activities
$1,247,714
5 projects

Funding 2009

5. Core/Other Activities
$2,004,687
8 projects

Funding 2010

5. Core/Other Activities
$13,436,737
66 projects

Funding 2011

5. Core/Other Activities
$11,553,704
63 projects

Funding 2012

5. Core/Other Activities
$9,060,297
62 projects

Funding 2013

5. Core/Other Activities
$7,250,109
57 projects

Funding Total

$44,553,248

IACC Strategic Plan Objectives

Reported funding for Question 5*

Funding 2008

$1,685,222
13 projects

Funding 2009

$8,648,050
36 projects

Funding 2010

$64,849,122
211 projects

Funding 2011

$26,118,904
137 projects

Funding 2012

$22,827,101
138 projects

Funding 2013

$20,047,285
125 projects

Funding Total

$144,175,684

IACC Strategic Plan Objectives

Adjusted funding for Question 5

Funding 2008

$3,874,552
9 projects

Funding 2009

$8,648,051
36 projects

Funding 2010

$64,849,122
211 projects

Funding 2011

$26,118,904
137 projects

Funding 2012

$22,827,101
138 projects

Funding 2013

$20,047,285
125 projects

Funding Total

$146,365,015

Question 5 Multiyear Funding Table, see appendix for a color-coding key and further details.

*The “Reported funding” totals reflect the funding and projects originally coded to this Question of the Strategic Plan, as reported in the Portfolio Analysis Report corresponding to the year indicated at the top of the column. When reading each column of the table vertically, please note that the projects and funding associated with each objective for the years 2008 and 2009 may not add up to the reported funding total at the bottom of the column; this is due to adjustments made to account for revisions in the Strategic Plan, which caused the shifting of some objectives to other Questions under the Plan. The projects and funding associated with these reclassified objectives are now reflected under the Question in which they appear in the 2011 Strategic Plan.

The “Adjusted funding” total reflects funding for projects aligned to objectives in the 2011 IACC Strategic Plan (the most recent version in which objectives were revised) and incorporates funding for projects that may have been coded differently under previous versions of the Plan.

Table 8. Multiyear funding table for Question 5.


Strategic Plan Question 6 Lifespan Issues

Aspirational goal: All people with ASD will have the opportunity to lead self-determined lives in the community of their choice through school, work, community participation, meaningful relationships, and access to necessary and individualized services and supports.


Research Focus of Question 6

With increasing societal awareness of the needs of people on the autism spectrum across the lifespan, Question 6 addresses the question “What does the future hold, particularly for adults?” Question 6 encompasses research to identify and address issues surrounding transition to adulthood, access to services across the lifespan, and quality of life. Some of the research in Question 6 represents projects that assess the long-term outcomes (in terms of measures such as quality of life, health, independence, and employment) for people on the autism spectrum, particularly with respect to interventions and services they might have received. Many projects assigned to Question 6 focus on adolescents transitioning from the education system to employment, as well as vocational/job skills and social skills training for both transitional aged youth and adults.

In an effort to describe the research funded in Question 6 in 2013, a word cloud was created using the project titles listed under this question (Figure 41). The size of each word within the word cloud indicates the frequency of its use in project titles. The word cloud visually portrays the main research themes and topics that were funded in Question 6.

Word cloud representing themes in Question 6 project titles.

Figure 41. Word cloud representing themes in Question 6 project titles.

Analysis of 2013 Question 6 Portfolio

In 2013, research on lifespan issues associated with ASD (Question 6) accounted for 1% ($3.2 million) of total ASD research funding and included 27 projects (2% of all projects). This Question area has the smallest number of projects (27) and the smallest number of funders involved —only seven organizations and agencies (Figure 11). The agencies and organizations with the largest stakes are the National Institutes of Health, Autism Speaks, and the Department of Education. Question 6 consists of eight objectives. In 2013, five objectives received funding, one objective included an active project with no funding, and two objectives did not have any active projects or funding. Figure 42 provides a detailed overview of each objective’s total funding in 2013 as well as the number of projects assigned to each objective.

Studies assessing quality of life for adults with ASD and service delivery systems (6.S.A) received the most funding in Question 6 ($1.1 million; 35%) and had the greatest number of projects (9 projects). The next largest portion of funding for this question went to projects that did not fit into any of the specific Question 6 research objectives and were assigned as Core/Other ($1.1 million, 35%). The remaining objectives in Question 6 that received funding received significantly smaller portions of funding. Objectives 6.S.B and 6.L.C did not receive funding but have been funded in previous years. Table 9 lists all the objectives and their progress to date.

Bar chart showing Question 6 objectives broken down by their funding and project count.

Figure 42. Question 6 objectives broken down by their funding and project count.

Question 6 Subcategory Analysis

Because Question 6 had so few assigned projects (27) and only $3.2 million of total ASD funding in 2013, and because many projects encompassed more than one topic, it was difficult to formulate and group the research into subcategories in the same fashion as was done for the other questions. However, this will likely change as the research field concerned with ASD across the lifespan grows and matures, allowing the development of subcategories in the future.

Progress Made on Question 6 from 2008-2013

Figure 43 shows the trend in Question 6 funding over time using the adjusted funding total in Table 9. The adjusted funding reflects funding for projects aligned to objectives in the 2011 IACC Strategic Plan that may have been coded differently under previous versions of the plan. Research related to Question 6 received the lowest level of annual funding for the six-year time period. Although there was a small increase in funding for this question area from 2009-2010, the overall trend shows that funding for this question has stayed low and relatively flat over the six-year period.

Line graph showing Question 6 funding by strategic plan question

Figure 43. Question 6 ASD research funding from 2008-2013. Funding for Question 6 remained low over the six-year span and overall experienced a gradual decrease.

Progress Made on Question 6 Objectives From 2008-2013

All of the eight Question 6 objectives have been partially completed since 2008 (Figure 44). However, only some of the Question 6 objectives saw growth in 2013, and this 2013 progress was not enough to change the overall status of any of the objectives from what was reported in 2012. After six years of monitoring progress in this Question area, none of the objectives have achieved completed status. Table 9 provides a snapshot of progress made on all eight of the research objectives within Question 6 over the period from 2008-2013.

Stop light with red = 0, yellow = 8, and green = 0, showing progress of 8 question 6 objectives

Figure 44. Overall status of progress for the eight Question 6 objectives.

Question 6: What Does The Future Hold, Particularly For Adults?

IACC Strategic Plan Objectives Funding
Year 2008 2009 2010 2011 2012 2013 Total

IACC Strategic Plan Objectives

Launch at least two studies to assess and characterize variation in the quality of life for adults on the ASD spectrum as it relates to characteristics of the service delivery system (e.g., safety, integrated employment, postsecondary educational opportunities, community inclusion, self-determination, relationships, and access to health services and community-based services) and determine best practices by 2012.

IACC Recommended Budget: $5,000,000 over 3 years

Funding 2008

6.2
$60,000
1 project

Funding 2009

6.S.A
$20,000
1 project

Funding 2010

6.S.A
$283,837
2 projects

Funding 2011

6.S.A
$542,193
6 projects

Funding 2012

6.S.A
$1,013,156
10 projects

Funding 2013

6.S.A
$1,118,557
9 projects

Funding Total

$3,037,743

IACC Strategic Plan Objectives

Evaluate at least one model, at the State and local level, in which existing programs to assist people with disabilities (e.g., Social Security Administration, Rehabilitation Services Administration) meet the needs of transitioning youth and adults with ASD by 2013.

IACC Recommended Budget: $5,000,000 over 3 years

Funding 2008

N/A

Funding 2009

6.S.B
$0
0 projects

Funding 2010

6.S.B
$700,000
2 projects

Funding 2011

6.S.B
$700,000
2 projects

Funding 2012

6.S.B
$700,000
2 projects

Funding 2013

6.S.B
$0
0 projects

Funding Total

$2,100,000

IACC Strategic Plan Objectives

Develop one method to identify adults across the ASD spectrum who may not be diagnosed, or are misdiagnosed, to support service linkage, better understand prevalence, and track outcomes with consideration of ethical issues (insurance, employment, stigma) by 2015.

IACC Recommended Budget: $8,400,000 over 5 years

Funding 2008

N/A

Funding 2009

6.S.C
$0
0 projects

Funding 2010

6.S.C
$28,000
1 project

Funding 2011

6.S.C
$28,000
1 project

Funding 2012

6.S.C
$0
1 project

Funding 2013

6.S.C
$240,000
1 project

Funding Total

$296,000

IACC Strategic Plan Objectives

Conduct at least one study to measure and improve the quality of lifelong supports being delivered in community settings to adults across the spectrum with ASD through provision of specialized training for direct care staff, parents, and legal guardians, including assessment and development of ASD-specific training, if necessary, by 2015.

IACC Recommended Budget: $7,500,000 over 5 years

Funding 2008

N/A

Funding 2009

6.S.D
$0
0 projects

Funding 2010

6.S.D
$619,163
3 projects

Funding 2011

6.S.D
$0
2 projects

Funding 2012

6.S.D
$0
1 project

Funding 2013

6.S.D
$0
1 project

Funding Total

$619,163

IACC Strategic Plan Objectives

Develop at least two individualized communitybased interventions that improve quality-of-life or health outcomes for the spectrum of adults with ASD by 2015.

IACC Recommended Budget: $12,900,000 over 5 years

Funding 2008

6.5
$0
0 projects

Funding 2009

6.L.A
$509,965
2 projects

Funding 2010

6.L.A
$2,285,071
18 projects

Funding 2011

6.L.A
$2,154,170
15 projects

Funding 2012

6.L.A
$616,119
11 projects

Funding 2013

6.L.A
$290,180
5 projects

Funding Total

$5,855,505

IACC Strategic Plan Objectives

Conduct one study that builds on carefully characterized cohorts of children and youth with ASD to determine how interventions, services, and supports delivered during childhood impact adult health and quality of life outcomes by 2015.

IACC Recommended Budget: $5,000,000 over 5 years

Funding 2008

N/A

Funding 2009

6.L.B
$718,290
2 projects

Funding 2010

6.L.B
$1,280,790
3 projects

Funding 2011

6.L.B
$1,348,557
4 projects

Funding 2012

6.L.B
$639,346
2 projects

Funding 2013

6.L.B
$353,910
2 projects

Funding Total

$4,340,893

IACC Strategic Plan Objectives

Conduct comparative effectiveness research that includes a cost-effectiveness component to examine community-based interventions, services, and supports to improve health outcomes and quality of life for adults on the ASD spectrum over age 21 by 2018. Topics should include:

  • Community housing for people with ASD;
  • Successful life transitions for people with ASD, including from post-secondary education to adult services, employment, sibling relationships, and day programs; and
  • Meeting the service and support needs of older adults with ASD.

IACC Recommended Budget: $6,000,000 over 5 years

Funding 2008

N/A

Funding 2009

6.L.C
$0
0 projects

Funding 2010

6.L.C
$774,644
2 projects

Funding 2011

6.L.C
$0
0 projects

Funding 2012

6.L.C
$0
0 projects

Funding 2013

6.L.C
$0
0 projects

Funding Total

$774,644

IACC Strategic Plan Objectives

Conduct implementation research to test the results from comparative effectiveness research in real-world settings, including a cost-effectiveness component to improve health outcomes and quality of life for adults over 21 on the ASD spectrum by 2023.

IACC Recommended Budget: $4,000,000 over 5 years

Funding 2008

N/A

Funding 2009

6.L.D
$0
0 projects

Funding 2010

6.L.D
$0
0 projects

Funding 2011

6.L.D
$75,000
2 projects

Funding 2012

6.L.D
$60,000
3 projects

Funding 2013

6.L.D
$60,000
2 projects

Funding Total

$195,000

IACC Strategic Plan Objectives

Not specific to any objective (Core/Other Activities)

Funding 2008

6. Core/Other Activities
$467,683
2 projects

Funding 2009

6. Core/Other Activities
$159,444
2 projects

Funding 2010

6. Core/Other Activities
$671,619
3 projects

Funding 2011

6. Core/Other Activities
$50,000
3 projects

Funding 2012

6. Core/Other Activities
$830,556
4 projects

Funding 2013

6. Core/Other Activities
$1,090,239
7 projects

Funding Total

$3,269,541

IACC Strategic Plan Objectives

Reported funding for Question 6*

Funding 2008

$9,796,491
9 projects

Funding 2009

$1,407,699
7 projects

Funding 2010

$6,643,124
34 projects

Funding 2011

$4,897,920
35 projects

Funding 2012

$3,859,177
34 projects

Funding 2013

$3,152,885
27 projects

Funding Total

$29,757,296

IACC Strategic Plan Objectives

Adjusted funding for Question 6

Funding 2008

$527,683
3 projects

Funding 2009

$1,407,699
7 projects

Funding 2010

$6,643,124
34 projects

Funding 2011

$4,897,920
35 projects

Funding 2012

$3,859,177
34 projects

Funding 2013

$3,152,886
27 projects

Funding Total

$20,488,489

Question 6 Multiyear Funding Table, see appendix for a color-coding key and further details.

*The “Reported funding” totals reflect the funding and projects originally coded to this Question of the Strategic Plan, as reported in the Portfolio Analysis Report corresponding to the year indicated at the top of the column. When reading each column of the table vertically, please note that the projects and funding associated with each objective for 2008 may not add up to the reported funding total at the bottom of the column; this is due to adjustments made to account for revisions in the Strategic Plan, which caused the shifting of some objectives to other Questions under the Plan. The projects and funding associated with these reclassified objectives are now reflected under the Question in which they appear in the 2011 Strategic Plan.

The “Adjusted funding” total reflects funding for projects aligned to objectives in the 2011 IACC Strategic Plan (the most recent version in which objectives were revised) and incorporates funding for projects that may have been coded differently under previous versions of the Plan.

Table 9. Multiyear funding table for Question 6.


Strategic Plan Question 7 Infrastructure and Surveillance

Aspirational goal: Develop and support infrastructure and surveillance systems that advance the speed, efficacy, and dissemination of ASD research


Research Focus of Question 7

Question 7 (“What other infrastructure and surveillance needs must be met?”) covers the topics of research infrastructure, data sharing, workforce development, ASD surveillance, and communication/dissemination of research findings and evidence-based practices. With 16 objectives, Question 7 has the greatest number of objectives of all seven questions in the Strategic Plan.

A word cloud was made using the project titles listed under this question to describe the research funded in Question 7 in 2013 (Figure 45). The size of each word within the word cloud indicates the frequency of its use in project titles. The word cloud visually portrays the main research themes and topics that were funded in Question 7.

Word cloud representing themes in Question 7 project titles.

Figure 45. Word cloud representing themes in Question 7 project titles.

Analysis of 2013 Question 7 Portfolio

Projects assigned to Question 7 comprised 14% ($44.1 million) of the total ASD research supported in 2013. Question 7 consisted of 117 projects, which was 9% of the total number of projects. The agencies and orga-nizations with the largest investments in Question 7 include Simons Foundation, the National Institutes of Health, and the Centers for Disease Control and Prevention. There are 16 objectives that fall under the Question 7 research area. Five objectives did not have active projects or funding in 2013. Figure 46 provides a detailed overview of each objective’s total funding in 2013 as well as the number of projects assigned to each objective.

Bar chart showing Question 7 objectives broken down by their funding and project count.

Figure 46. Question 7 objectives broken down by their funding and project count.

The largest portion of funding categorized under Question 7 did not fit into any of the specific research objectives and were assigned as Core/Other ($13.7 million, 31%). Of the 16 Question 7 objectives, programs enhancing the research workforce and developing interdisciplinary training (7.K) received the next largest amount of funding ($9.6 million, 22%). Objective 7.N followed with $7.6 million (17%) in funding and 23 projects; this objective funds the expansion of clinical research sites collecting and coordinating standardized and comprehensive diagnostic, biological, and medical data. Although Objective 7.G was not funded in 2013, it was already considered completed due to activity in previous years. Objectives 7.A, 7.E, 7.F, and 7.M also did not receive any funding in 2013. Objective 7.E, which supports the development of a virtual toolbox for researchers to disseminate findings, has received funding in previous years and is considered complete. However, objectives 7.A, 7.F, and 7.M have never received funding, which may be due to the wording or specificity of the goal (e.g., the “Promising Practices” papers program mentioned in objective 7.M was piloted by CMS prior to the launch of the Strategic Plan in 2009, but the program was not continued). Table 10 lists all the objectives and their progress to date.

Question 7 Subcategory Analysis

Projects within Question 7 accounted for $44.1 million of total funding in 2013. The six subcategories in Question 7 reflect the broad array of ASD research infrastructure needs that have been identified by the IACC: Biobanks; Data tools; Research infrastructure; Research recruit¬ment and clinical care; Research workforce development; and Surveillance and prevalence studies (Figure 47).

The six subcategories in Question 7 encompass a diverse set of project types, with funding distributed relatively evenly across them. In 2013, Research infrastructure received 29% of funding, followed by support for Research workforce development (22%), which supports conferences and training for autism researchers. Surveillance and prevalence studies, such as studies under the Autism and Developmental Disabilities Monitoring (ADDM) Network, and Data tools, such as National Database for Autism Research (NDAR) and the Autism Genetics Resource Exchange (AGRE) each received 15% of funding. Research recruitment and clinical care, which helps increase participation in research studies and conduct medical evaluations of participants, received 10%, and Biobanks received 8%.

Pie chart showing Question 7 funding by subcategory

Figure 47. Question 7 funding by subcategory in 2013.

Progress Made on Question 7 From 2008-2013

Figure 48 shows the trend in Question 7 funding over the six-year span of 2008-2013 using the adjusted funding totals from Table 10. The adjusted funding reflects funding for projects aligned to objectives in the 2011 IACC Strategic Plan and accounts for funding of projects that may have been coded differently under previous versions of the Plan. Research falling within this question area experienced a rapid increase in funding from 2008-2010. However, 2010 funding levels for these infrastructure and surveillance projects leveled off to a flat, moderate level from 2010-2013.

Line graph showing Question 7 funding by strategic plan question

Figure 48. Question 7 ASD research funding from 2008-2013. Following an initial increase from 2008-2010, funding for Question 7 remained primarily flat from 2010-2013.

Progress Made on Question 7 Objectives From 2008-2013

An assessment of total progress since 2008 indicates that nine Question 7 objectives were considered completed, four objectives saw partial progress toward their overall recommended budgeted goals, and three objectives —Objectives 7.A (needs assessment toward linkage of administrative databases), 7.F (replication studies), and 7.M (promising practices papers about successful services delivery strategies)—have experienced no progress as of 2013 (Figure 49). The Committee felt that 7.A was still a need, but the IACC was uncertain of whether the objective 7.F was feasible, and of whether or not 7.M had been replaced by other modes of dissemination. While a number of Question 7 objectives saw growth in 2013, the 2013 progress was not enough to change the overall status of any of the objectives from what was reported in 2012. Table 10 provides a snapshot of progress made on all 16 of the research objectives within Question 7 over the period from 2008-2013.

Stop light with red = 3, yellow = 4, and green = 9, showing progress of 16 question 7 objectives

Figure 49. Overall status of progress for the 16 Question 7 objectives.

Question 7: What Other Infrastructure And Surveillance Must Be Met?

IACC Strategic Plan Objectives Funding
Year 2008 2009 2010 2011 2012 2013 Total

IACC Strategic Plan Objectives

Conduct a needs assessment to determine how to merge or link administrative and/or surveillance databases that allow for tracking the involvement of people living with ASD in health care, education, and social services by 2009.

IACC Recommended Budget: $520,000 over 1 year

Funding 2008

6.4
$0
0 projects

Funding 2009

7.A
$0
0 projects

Funding 2010

7.A
$0
0 projects

Funding 2011

7.A
$0
0 projects

Funding 2012

7.A
$0
0 projects

Funding 2013

7.A
$0
0 projects

Funding Total

$0

IACC Strategic Plan Objectives

Conduct an annual “State of the States” assessment of existing State programs and supports for people and families living with ASD by 2011.

IACC Recommended Budget: $300,000 each year

Funding 2008

5.1
$311,670
6 projects

Funding 2009

7.B
$7,061
1 project

Funding 2010

7.B
$197,128
2 projects

Funding 2011

7.B
$88,154
1 project

Funding 2012

7.B
$0
1 project

Funding 2013

7.B
$13,495
1 project

Funding Total

$617,508

IACC Strategic Plan Objectives

Develop and have available to the research community means by which to merge or link databases that allow for tracking the involvement of people in ASD research by 2010.

IACC Recommended Budget: $1,300,000 over 2 years

Funding 2008

6.1
$6,767,808
4 projects

Funding 2009

7.C
$1,665,180
2 projects

Funding 2010

7.C
$2,785,368
5 projects

Funding 2011

7.C
$1,387,146
7 projects

Funding 2012

7.C
$985,158
6 projects

Funding 2013

7.C
$1,177,741
5 projects

Funding Total

$14,768,401

IACC Strategic Plan Objectives

Establish and maintain an international network of biobanks for the collection of brain tissue, fibroblasts for pluripotent stem cells, and other tissue or biological material, by acquisition sites that use standardized protocols for phenotyping, collection, and regulated distribution of limited samples by 2011.

  • This includes support for post-processing of tissue, such as genotyping, RNA expression profiling, and MRI.
  • Protocols should be put into place to expand the capacities of ongoing large-scale children’s studies to collect and store additional biomaterials, including newborn bloodspots, promoting detection of biological signatures.
  • Support should also be provided to develop an international web-based digital brain atlas that would provide high-resolution 3-D images and quantitative anatomical data from tissue of patients with ASD and disease controls across the lifespan, which could serve as an online resource for quantitative morphological studies, by 2014.

IACC Recommended Budget: $82,700,000 over 5 years

Funding 2008

2.1 & 2.6
$5,018,579
1 project &
1 project

Funding 2009

7.D
$436,815
2 projects

Funding 2010

7.D
$7,814,918
6 projects

Funding 2011

7.D
$8,531,425
6 projects

Funding 2012

7.D
$2,950,550
5 projects

Funding 2013

7.D
$3,369,545
8 projects

Funding Total

$28,121,832

IACC Strategic Plan Objectives

Begin development of a web-based toolbox to assist researchers in effectively and responsibly disseminating their findings to the community, including people with ASD, their families, and health practitioners by 2011.

IACC Recommended Budget: $400,000 over 2 years

Funding 2008

N/A

Funding 2009

7.E
$330,663
2 projects

Funding 2010

7.E
$390,134
1 project

Funding 2011

7.E
$533,354
1 project

Funding 2012

7.E
$0
1 project

Funding 2013

7.E
$0
0 projects

Funding Total

$1,254,151

IACC Strategic Plan Objectives

Create funding mechanisms that encourage rapid replication studies of novel or critical findings by 2011.

No recommended budget assigned by the IACC

Funding 2008

N/A

Funding 2009

7.F
$0
0 projects

Funding 2010

7.F
$0
0 projects

Funding 2011

7.F
$0
0 projects

Funding 2012

7.F
$0
0 projects

Funding 2013

7.F
$0
0 projects

Funding Total

$0

IACC Strategic Plan Objectives

Develop a web-based tool that provides population estimates of ASD prevalence for States based on the most recent prevalence range and average identified by the ADDM Network by 2012.

(This objective can be considered completed – CDC’s Environmental Tracking tool)

IACC Recommended Budget: $200,000 over 2 years

*This objective was completed in 2012

Funding 2008

N/A

Funding 2009

7.G
$0
0 projects

Funding 2010

7.G
$0
0 projects

Funding 2011

7.G
$0
0 projects

Funding 2012

7.G*
$0
0 projects

Funding 2013

7.G*
$0
0 projects

Funding Total

$0

IACC Strategic Plan Objectives

Create mechanisms to specifically support the contribution of data from 90% of newly initiated projects to the National Database for Autism Research (NDAR), and link NDAR with other existing data resources by 2012.

IACC Recommended Budget: $6,800,000 over 2 years

Funding 2008

N/A

Funding 2009

7.H
$1,932,996
2 projects

Funding 2010

7.H
$2,453,253
3 projects

Funding 2011

7.H
$1,517,596
1 project

Funding 2012

7.H
$3,679,808
5 projects

Funding 2013

7.H
$1,026,179
3 projects

Funding Total

$10,609,832

IACC Strategic Plan Objectives

Supplement existing ADDM Network sites to use population-based surveillance data to conduct at least five hypothesis-driven analyses evaluating factors that may contribute to changes in ASD prevalence by 2012.

IACC Recommended Budget: $660,000 over 2 years

Funding 2008

N/A

Funding 2009

7.I
$6,715,815
15 projects

Funding 2010

7.I
$6,137,128
13 projects

Funding 2011

7.I
$4,928,453
13 projects

Funding 2012

7.I
$6,028,878
13 projects

Funding 2013

7.I
$5,747,286
13 projects

Funding Total

$28,457,135

IACC Strategic Plan Objectives

Develop the personnel and technical infrastructure to assist States, territories, and other countries that request assistance describing and investigating potential changes in the prevalence of ASD and other developmental disabilities by 2013.

IACC Recommended Budget: $1,650,000 over 3 years

Funding 2008

N/A

Funding 2009

7.J
$494,449
11 projects

Funding 2010

7.J
$170,490
4 projects

Funding 2011

7.J
$545,414
6 projects

Funding 2012

7.J
$159,610
4 projects

Funding 2013

7.J
$151,545
2 projects

Funding Total

$1,521,508

IACC Strategic Plan Objectives

Encourage programs and funding mechanisms that expand the research workforce, enhance interdisciplinary research training, and recruit early-career scientists into the ASD field by 2013.

IACC Recommended Budget: $5,000,000 over 3 years

Funding 2008

N/A

Funding 2009

7.K
$2,527,472
7 projects

Funding 2010

7.K
$7,358,427
34 projects

Funding 2011

7.K
$4,813,286
27 projects

Funding 2012

7.K
$10,003,091
25 projects

Funding 2013

7.K
$9,560,821
31 projects

Funding Total

$34,263,097

IACC Strategic Plan Objectives

Expand the number of ADDM sites in order to conduct ASD surveillance in children and adults; conduct complementary direct screening to inform completeness of ongoing surveillance; and expand efforts to include autism subtypes by 2015.

IACC Recommended Budget: $16,200,000 over 5 years

Funding 2008

N/A

Funding 2009

7.L
$699,304
2 projects

Funding 2010

7.L
$1,429,602
8 projects

Funding 2011

7.L
$705,552
6 projects

Funding 2012

7.L
$847,002
6 projects

Funding 2013

7.L
$874,638
6 projects

Funding Total

$4,556,098

IACC Strategic Plan Objectives

Support 10 “Promising Practices” papers that describe innovative and successful services and supports being implemented in communities that benefit the full spectrum of people with ASD, which can be replicated in other communities, by 2015.

IACC Recommended Budget: $75,000 over 5 years

Funding 2008

N/A

Funding 2009

7.M
$0
0 projects

Funding 2010

7.M
$0
0 projects

Funding 2011

7.M
$0
0 projects

Funding 2012

7.M
$0
0 projects

Funding 2013

7.M
$0
0 projects

Funding Total

$0

IACC Strategic Plan Objectives

Enhance networks of clinical research sites offering clinical care in real-world settings that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g., DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments by 2012.

IACC Recommended Budget: $1,850,000 over 1 year

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

7.N
$6,662,790
3 projects

Funding 2011

7.N
$7,419,887
22 projects

Funding 2012

7.N
$5,270,828
22 projects

Funding 2013

7.N
$7,616,296
23 projects

Funding Total

$26,969,801

IACC Strategic Plan Objectives

Create an information resource for ASD researchers (e.g., PhenX Project ) to share information to facilitate data sharing and standardization of methods across projects by 2013.

  • This includes common protocols, instruments, designs, and other procedural documents and should include updates on new technology and links to information on how to acquire and utilize technology in development.
  • This can serve as a bidirectional information reference, with autism research driving the development of new resources and technologies, including new model systems, screening tools, and analytic techniques.

IACC Recommended Budget: $2,000,000 over 2 years

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

7.O
$605,338
3 projects

Funding 2011

7.O
$1,070,941
3 projects

Funding 2012

7.O
$728,000
1 project

Funding 2013

7.O
$728,000
1 project

Funding Total

$3,132,279

IACC Strategic Plan Objectives

Provide resources to centers or facilities that develop promising vertebrate and invertebrate model systems, and make these models more easily available or expand the utility of current model systems, and support new approaches to develop high-throughput screening technologies to evaluate the validity of model systems by 2013.

IACC Recommended Budget: $1,100,000 over 2 years

Funding 2008

N/A

Funding 2009

N/A

Funding 2010

7.P
$1,588,780
1 project

Funding 2011

7.P
$0
0 projects

Funding 2012

7.P
$0
0 projects

Funding 2013

7.P
$125,000
1 project

Funding Total

$1,713,780

IACC Strategic Plan Objectives

Not specific to any objective (Core/Other Activities)

Funding 2008

N/A

Funding 2009

7. Core/Other Activities
$1,000,000
2 projects

Funding 2010

7. Core/Other Activities
$13,253,709
26 projects

Funding 2011

7. Core/Other Activities
$12,314,084
18 projects

Funding 2012

7. Core/Other Activities
$16,863,272
23 projects

Funding 2013

7. Core/Other Activities
$13,732,127
23 projects

Funding Total

$57,163,192

IACC Strategic Plan Objectives

Reported funding for Question 7*

Funding 2008

N/A

Funding 2009

$15,809,755
46 projects

Funding 2010

$50,847,065
108 projects

Funding 2011

$43,855,291
111 projects

Funding 2012

$47,516,197
112 projects

Funding 2013

$43,022,248
117 projects

Funding Total

$201,050,556

IACC Strategic Plan Objectives

Adjusted funding for Question 7

Funding 2008

$12,098,057
12 projects

Funding 2009

$15,809,755
46 projects

Funding 2010

$50,847,065
108 projects

Funding 2011

$43,855,291
111 projects

Funding 2012

$47,516,197
112 projects

Funding 2013

$43,022,248
117 projects

Funding Total

$213,148,614

Question 7 Multiyear Funding Table, see appendix for a color-coding key and further details.

*The “Reported funding” totals reflect the funding and projects originally coded to this Question of the Strategic Plan, as reported in the Portfolio Analysis Report corresponding to the year indicated at the top of the column. When reading each column of the table vertically, please note that the projects and funding associated with each objective for 2008 may not add up to the reported funding total at the bottom of the column; this is due to adjustments made to account for revisions in the Strategic Plan, which caused the shifting of some objectives to other Questions under the Plan. The projects and funding associated with these reclassified objectives are now reflected under the Question in which they appear in the 2011 Strategic Plan.

The “Adjusted funding” total reflects funding for projects aligned to objectives in the 2011 IACC Strategic Plan (the most recent version in which objectives were revised) and incorporates funding for projects that may have been coded differently under previous versions of the Plan.

Table 10. Multiyear funding table for Question 7.

Summary and Conclusion

The 2013 ASD Research Funding Portfolio Analysis Report is the fifth comprehensive annual review of ASD research funding across both the Federal and private sectors. Data were collected from 18 Federal and private funders, including one which was new to the Portfolio Analysis. The diverse missions of the different funders are reflected in the ASD research portfolio across the seven questions of the Strategic Plan. In 2013, Federal agencies continued to fund three-quarters of ASD research while private organizations contributed a quarter of funding. Among the participating funders, NIH continued to contribute the largest amount of funding toward autism research.

Overall, funding for ASD research among both Federal and private funders totaled $305.6 million and spanned 1,279 projects. With six years of ASD research funding data available, it was possible to continue analyzing funding trends, enabling meaningful observations about the long-term progress of the field of ASD research over the period from 2008-2013. Over the six years, autism research showed a general upward trend in funding, increasing by 38% since 2008.

One of the key aims of the Portfolio Analysis Report is to evaluate the progress made in addressing the research priorities as outlined in the Strategic Plan objectives. In 2013, significant progress was made toward completing the objectives in the 2011 Strategic Plan, with 95% (74 objectives) of the 78 objectives either partially or fully completed. Considering the period from 2008-2013, only 5% (4 objectives) of the 2011 Strategic Plan objectives were not active at any point across this six-year window. This indicates that the vast majority of priority areas identified in the Strategic Plan objectives were deemed by government and private research funders to be worthy of investment and were implemented either partially or fully. While broad implementation efforts across the vast majority of Strategic Plan objectives demonstrated commitment of Federal and private funders to pursuing the research areas prioritized by the Committee, many areas of partial funding still left significant gaps that were not filled over this period. Further attention and additional funding may be needed in the future to stimulate and develop more robust research efforts in those areas.

In addition to analysis of progress made on completing the specific research objectives outlined in the Strategic Plan, the subcategory classification system, introduced in the 2010 Portfolio Analysis, continues to provide an alternative perspective on the content of the autism research portfolio. Even with possible future changes in Strategic Plan objectives, the subcategory analysis will allow tracking of growth and change in general research areas over time, including the emergence of new fields that attract investment from research funders.

Additional analyses on the geographical distribution of autism research funding, investments in long-term (ongoing) research compared to newly funded projects, and the types of research funded by different agencies and organizations were included in this portfolio analysis to provide more detailed information on the autism research landscape for the Committee and community stakeholders.

The annual ASD Research Funding Portfolio Analysis Report assists the Committee with carrying out its charge to monitor autism activities and to inform the process of updating the IACC Strategic Plan for ASD Research. The analysis continues to serve as a resource for the Committee, funders, and the broader ASD community to identify and address knowledge gaps, recognize emerging trends and new opportunities, and guide future research priorities to better meet the needs of families and individuals affected by ASD.

Appendices

Appendix A

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.

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 evidence-based practices, and train health care professionals to provide screening as well as diagnostic and early, evidence-based intervention. Flagship programs include the Autism Intervention Research Networks (AIR-B and AIR-P), the Developmental Behavioral Pediatrics Research Network (DBPNet), and the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program.

National Institutes of Health (NIH)

The 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.

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 transition-aged 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.

Patient-Centered Outcomes Research Institute (PCORI)

PCORI helps people make informed healthcare decisions and improves healthcare delivery and outcomes by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare 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.


Appendix B

ASD-Related Research Projects not included in the IACC Portfolio Analysis

This section contains lists of projects that are not specifically focused on autism, but may be helpful in understanding the broader landscape of ongoing research on disabilities and other topics that may be relevant to autism.

NATIONAL SCIENCE FOUNDATION (NSF)
Award Period Principal Investigator Project Title Weblink

Award Period

2013-2015

Principal Investigator

Fuh-Cherng Jeng

Project Title

Development of Experience-Dependent Responses to Voice Pitch in Newborns and Infants

Weblink

http://www.nsf.gov/awardsearch/showAward?AWD_ID=1250700&HistoricalAwards=false

Award Period

2013-2017

Principal Investigator

Michael Paradiso

Project Title

Neural investigation of the dual role of saccadic eye movements in visual perception

Weblink

http://www.nsf.gov/awardsearch/showAward?AWD_ID=1261433&HistoricalAwards=false

Award Period

2013-2018

Principal Investigator

Nicole Rust

Project Title

CAREER: The neural mechanisms underlying visual target and task switching

Weblink

http://www.nsf.gov/awardsearch/showAward?AWD_ID=1265480&HistoricalAwards=false

Award Period

2013-2015

Principal Investigator

Peter Heeman

Project Title

RI: Small: Flexible Turn-Taking for Mixed-Initiative Spoken Dialogue System

Weblink

http://www.nsf.gov/awardsearch/showAward?AWD_ID=1321146&HistoricalAwards=false

Award Period

2013-2016

Principal Investigator

Paula Niedenthal

Project Title

Behavioral and neural bases of the perception of facial expressions

Weblink

http://www.nsf.gov/awardsearch/showAward?AWD_ID=1251101&HistoricalAwards=false

Award Period

2013-2016

Principal Investigator

Alison Gopnik

Project Title

Rational randomness: Search, sampling and exploration in children's causal learning

Weblink

http://www.nsf.gov/awardsearch/showAward?AWD_ID=1331620&HistoricalAwards=false

Award Period

2013-2016

Principal Investigator

Yang Liu

Project Title

EAGER: Investigating the Role of Discourse Context in Speech-Driven Facial Animations

Weblink

http://www.nsf.gov/awardsearch/showAward?AWD_ID=1352950&HistoricalAwards=false

Award Period

2013-2016

Principal Investigator

Brian Megerko

Project Title

HCC: Small: Social Agents and Robots for Open-Ended Domains

Weblink

http://www.nsf.gov/awardsearch/showAward?AWD_ID=1320520&HistoricalAwards=false

Award Period

2013-2015

Principal Investigator

Daniel Messinger

Project Title

Gaze Durations in Infancy

Weblink

http://www.nsf.gov/awardsearch/showAward?AWD_ID=1323927&HistoricalAwards=false

Award Period

2013-2017

Principal Investigator

Emanuel Papadaki

Project Title

Sparse 3D-Data Representations from Compactly Supported Atoms for Rigid Motion Invariant Classification with Applications to Neuroscience Imaging

Weblink

http://www.nsf.gov/awardsearch/showAward?AWD_ID=1320910&HistoricalAwards=false

Award Period

2013-2016

Principal Investigator

Ivan Soltesz

Project Title

US-French Collaboration: Mechanisms of emergent OscillaTIONs in the septohippocampal network-MOTION

Weblink

http://www.nsf.gov/awardsearch/showAward?AWD_ID=1310378&HistoricalAwards=false

DEPARTMENT OF EDUCATION, INSTITUTE OF EDUCATION SCIENCES (IES)
Award Period Principal Investigator Project Title Weblink

Award Period

2008-2017

Principal Investigator

Gail Mulligan

Project Title

Early Childhood Longitudinal Study, Kindergarten Class of 2010-11

Weblink

http://nces.ed.gov/ecls/kindergarten2011.asp

Award Period

2007-2015

Principal Investigator

Steven Ingels

Project Title

(RTI) High School Longitudinal Study

Weblink

http://nces.ed.gov/surveys/hsls09

Award Period

Ongoing

Principal Investigator

Drew Malizio

Project Title

National Assessment of Educational Progress

Weblink

http://nces.ed.gov/nationsreportcard/aboutnaep.asp

Award Period

2007-2013

Principal Investigator

Thomas Fiore

Project Title

Evaluation of the IDEA Personnel Development Program

Weblink

http://ies.ed.gov/ncee/projects/evaluation/disabilities_personnel.asp

Award Period

2010-2015

Principal Investigator

Jose Blackorby

Project Title

Study of Early Intervention and Special Education Personnel and Services

Weblink

http://ies.ed.gov/ncee/projects/evaluation/disabilities_persserv.asp

Award Period

2010-2015

Principal Investigator

John Burghardt

Project Title

National Longitudinal Transition Study 2012

Weblink

http://ies.ed.gov/ncee/projects/evaluation/disabilities_ideatrans.asp

Award Period

2008-2013

Principal Investigator

Mengli Song

Project Title

Study of School Accountability for Students with Disabilities

Weblink

http://ies.ed.gov/ncee/projects/evaluation/disabilities_students.asp

Award Period

2009-2014

Principal Investigator

Tamara Daley

Project Title

National Evaluation of the IDEA Technical Assistance and Dissemination Program

Weblink

http://ies.ed.gov/ncee/projects/evaluation/disabilities_idea2004.asp

Award Period

2007-2013

Principal Investigator

Jill Constantine, Neil Seftor, Scott Cody

Project Title

What Works Clearinghouse

Weblink

http://ies.ed.gov/ncee/wwc/interventionreport.aspx?sid=295

Award Period

2007-2013

Principal Investigator

Jill Constantine, Neil Seftor, Scott Cody

Project Title

What Works Clearinghouse

Weblink

http://ies.ed.gov/ncee/wwc/SingleStudyReview.aspx?sid=10011

Award Period

2007-2013

Principal Investigator

Jill Constantine, Neil Seftor, Scott Cody

Project Title

What Works Clearinghouse

Weblink

http://ies.ed.gov/ncee/wwc/topic.aspx?sid=19

Award Period

2012-2014

Principal Investigator

Bonnie Doren, Christopher Murray, Ketih Zvoch

Project Title

Examining malleable factors associated with school and postschool outcomes of economically disadvantaged youth with disabilities: A secondary analysis of data from the National Longitudinal Transition Study (NLTS2)

Weblink

http://ies.ed.gov/funding/grantsearch/details.asp?ID=1242

Award Period

2011-2014

Principal Investigator

Karrie Shogren

Project Title

Exploring the predictors and outcomes of self-determination for secondary students with disabilities using NLTS2

Weblink

http://ies.ed.gov/funding/grantsearch/details.asp?ID=1100


Appendix C

ASD Research Progress on IACC Strategic Plan Objectives: Summary of Years 2008-2013

The tables include data (project numbers and funding) from Federal and private funders of ASD research for years 2008 through 2013, as aligned with the objectives of the 2011 IACC Strategic Plan. Please note the following:

During the updating of the Strategic Plan from 2008-2010, the wording and numbering of objectives changed. Data included in each Portfolio Analysis Report from 2008-2013 was categorized at the time with respect to the most recent iteration of the Strategic Plan where the objectives had changed. For the purpose of this six-year comparison, data from the Portfolio Analyses conducted in 2008 and 2009 were aligned with the most recent objectives, found in the 2011 Strategic Plan. The full wording of the 78 objectives listed in the 2011 Strategic Plan is depicted in the left column of the table.

The middle six columns of the table contain the data (project numbers and funding) for each individual year from 2008-2013, with the objective number (as it appeared in the annual Portfolio Analysis) listed above it. The format of objective numbers are abbreviations representing the question number (indicated by a numeral 1-7), whether the objective is a short- or long-term objective (indicated by the letter “S” or “L”, respectively), and the objective designation (indicated by a letter). The IACC recommended budget listed below the project data represents the most updated budget listed in the 2011 Strategic Plan. If the recommended budget has been revised since 2008, the year the revision took place is found in parentheses following the budget figure. Therefore, if there is no mention of a revision, the IACC recommended budget has remained constant from 2008-2011. The annual project status for each objective from 2008-2013 is indicated within the table by colored highlighting of the objective number. An objective is considered active if its status is green or yellow, and inactive if its status is red.

  • Any objective colored green has funding which is greater than or equal to the recommended funding for that year (determined by annualizing the recommended budget associated with that objective); any objective colored yellow has actively funded projects, but with funding that totals less than the annualized recommended amount; any objective colored red has no active, funded projects.3
  • Objectives whose overarching aim (e.g., the ultimate goal of the research, irrespective of the number of projects or the budget for the objective) were achieved/partially achieved either in a previous year, with less annual funding than was recommended, or with funding that was not captured in the portfolio analyses,4 are colored pale green/pale yellow.

The far right column of the table lists the sum of the total funding aligned with each objective from 2008-2013. Highlighting of each total gives an indication of the overall progress toward completing each objective.

  • Green highlighting indicates that funding fully meets the recommend budget. Yellow highlighting denotes that funding for a particular objective partially meets the IACC recommended budget, while red highlighting indicates that there has been no funding towards the particular objective.
  • Objectives whose overarching aim (e.g. the ultimate goal of the research, irrespective of the number of projects or the budget for the objective) was achieved/ partially achieved either with a lower funding level than was recommended or with funding that was not captured in the portfolio analyses, are colored pale green/pale yellow.

3 Please note that while the green, yellow, and red indicators suggest a funding status for each year and that looking across all years may give some indication of a trend, some agencies and organizations provide all the funding for multiyear grants in a single year, resulting in the appearance of “less funding” in other years; projects completing the objectives may still have been ongoing in the years where the funding appears to be less. Thus, it is important to note the numbers of projects in looking across the chart, and to keep in mind that in a series, where, for example, most of the indicators are green, that the objective is likely to be largely “complete” according to the funding-based measure.

4 Reasons why funding for certain projects may not have been captured in the portfolio analyses include projects that were supported by funding that was not specific for autism (i.e., projects that benefited autism but were supported by general neuroscience or developmental disorder funding) or projects supported by funders that did not participate in the portfolio analysis in a given year.


Appendix D

Subcategory Definitions

Strategic Plan Question 1 and Associated research area

Diagnostic and screening tools

This subcategory includes projects that are developing new autism diagnostic and screening tests, as well as those establishing the usefulness of new or revised assessments for autism symptoms. It also encompasses projects aimed at adapting clinical assessments into other languages for use in multi-lingual community settings and non-U.S. countries.

Early signs and biomarkers

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

Intermediate phenotypes/Subgroups

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

Symptomology

These projects seek to define the broad range and severity of autism symptoms, including both biological and behavioral characteristics. Among these studies are some that examine how children and adults with autism vary in their development of social communication and language. Other projects seek to understand the emergence of problem behaviors and how neurocognitive impairments can contribute to symptom development and phenotypic variability in those with an autism diagnosis.

Strategic Plan Question 2 and Associated research area

Cognitive studies

These are studies of psychological and mental processes, including memory, producing and understanding language, solving problems, and making decisions. Projects in this subcategory consist of those that investigate theory of mind, social cognition and empathy, understanding facial expressions of emotion (and how and why this is impaired in ASD), and recall and memory.

Computational science

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

Co-occurring conditions

Research on conditions that often co-occur with ASD is included here, such as seizures/epilepsy, sleep disorders, gastrointestinal dysfunction, wandering/ elopement behavior, attention deficit hyperactivity disorder (ADHD), and familial autoimmune disorders.

Developmental trajectory

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

Immune/Metabolic pathways

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

Molecular pathways

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

Neural systems

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

Neuropathology

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

Sensory and motor function

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

Subgroups/Biosignatures

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

Strategic Plan Question 3 and Associated research area

Environmental risk factors

This subcategory includes a number of projects investigating potential environmental risk factors for autism. Example projects include studies of the effects of the microbiome, environmental contaminants and toxins, maternal dietary factors, medications taken during pregnancy or to induce labor, assistive reproductive treatments, child and maternal response to immune challenge, and registries where many of these factors can be tracked simultaneously.

Epigenetics

Epigenetics is the study of heritable changes in gene function that occur without a change in the DNA sequence (such as methylation of DNA). Environmental factors can cause these changes in gene expression, and projects in this subcategory seek to identify some of the environmental influences that may lead to these epigenetic changes.

Gene-Environment

These studies include efforts to identify and understand the contributions of environmental factors, genetic susceptibility, and human physiology (e.g., the immune system, metabolic processes) that may increase the risk for ASD, as well as studies that directly examine gene-environment interactions. (Note: While epigenetic studies are a subset of gene-environment studies, they are tracked as a separate subcategory because there is a substantial number of these projects and the topic of epigenetics is of significant public interest.)

Genetic risk factors

Projects in this subcategory seek to identify new genes that are implicated in increased risk for ASD or to better understand genetic risk factors that were previously identified.

Strategic Plan Question 4 and Associated research area

Behavioral

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

Complementary, dietary, and alternative

This subcategory includes research on acupressure; acupuncture; antioxidants; cholesterol supplementation; glutathione metabolism; nutritional supplements, vitamins, and minerals; probiotics; and special diets (e.g., gluten-free, casein-free).

Educational

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

Medical/Pharmacologic

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

Model systems/Therapeutic targets

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

Occupational, physical, and sensory-based

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

Technology-based interventions and supports

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

Strategic Plan Question 5 and Associated research area

Community inclusion programs

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

Efficacious and cost-effective service delivery

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

Family well-being and safety

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

Practitioner training

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

Services utilization and access

These projects include surveys of service systems available in different States, evaluations of patterns of medical service use among children with autism, a comprehensive online resource for autism services, andspecific efforts in several states to coordinate services for people with autism. They also evaluate disparities in diagnosis and service utilization as well as barriers to access for racial and ethnic minorities.

Strategic Plan Question 6 and Associated research area

Due to the small number of projects (27 projects in 2013) and the significant overlap between topics covered in these projects, no subcategories were created for this question in the 2013 Portfolio Analysis Report. As the research field grows, subcategories that encapsulate the scope of projects in this question may be defined in the future.

Strategic Plan Question 7 and Associated research area

Biobanks

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

Data tools

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

Research infrastructure

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

Research recruitment and clinical care

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

Research workforce development

Workshops, conferences, and training programs that serve to expand the research workforce, enhance interdisciplinary research training, and recruit earlycareer scientists into the ASD field are included in this subcategory.

Surveillance and prevalence studies

Research that measures autism prevalence in the U.S. and internationally is contained in this subcategory, including the Autism and Developmental Disabilities Monitoring (ADDM) Network sites maintained by the Centers for Disease Control and Prevention (CDC).

IACC LogoAbout the IACC

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee charged with coordinating all activities concerning autism spectrum disorder (ASD) within the U.S. Department of Health and Human Services (HHS) and providing advice to the Secretary of HHS on issues related to autism. It was established by Congress under the Children’s Health Act of 2000, reconstituted under the Combating Autism Act (CAA) of 2006, and renewed most recently under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2014.

Membership of the Committee includes a wide array of Federal agencies involved in ASD research and services, as well as public stakeholders, including self-advocates, family members of children and adults with ASD, advocates, service providers, and researchers, who represent a variety of perspectives from within the autism community. The IACC membership is composed to ensure that the Committee is equipped to address the wide range of issues and challenges faced by families and individuals affected by autism.

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

Through these and other activities, the IACC provides guidance to HHS and partners with the broader autism community to accelerate research and enhance services with the goal of profoundly improving the lives of people with ASD and their families.

For more information about the IACC, see www.iacc.hhs.gov.

Interagency Autism Coordinating Committee Member Roster

Chair

  • Thomas R. Insel, M.D. Director National Institute of Mental Health National Institutes of Health Bethesda, MD

Federal Members

  • James F. Battey, M.D., Ph.D. Director National Institute on Deafness and Other Other Communication Disorders National Institutes of Health Bethesda, MD
  • Linda Birnbaum, Ph.D. Director National Institute of Environmental Health Sciences and National Toxicology Program National Institutes of Health Research Triangle Park, NC
  • Coleen Boyle, Ph.D., M.S. Hyg. Director National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta, GA
  • Francis S. Collins, M.D., Ph.D. Director National Institutes of Health Bethesda, MD
  • Denise Dougherty, Ph.D. Senior Advisor for Child Health and Quality Improvement Agency for Healthcare Research and Quality Washington, DC
  • Tiffany R. Farchione, M.D. Medical Officer Division of Psychiatry Products Center for Drug Evaluation and Research U.S. Food and Drug Administration Silver Spring, MD
  • Alan E. Guttmacher, M.D. Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
  • Laura Kavanagh, M.P.P. Director Division of Research, Training and Education Maternal and Child Health Health Resources and Services Administration Rockville, MD
  • Donna M. Kimbark, Ph.D. Program Manager Congressionally Directed Medical Research Programs U.S. Department of Defense Frederick, MD
  • Walter J. Koroshetz, M.D. Director National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD
  • Sharon Lewis Commissioner Administration for Intellectual and Developmental Disabilities Acting Principal Deputy Administrator Administration for Community Living Washington, DC
  • John P. O’Brien, M.A. Senior Policy Analyst Disabled and Elderly Health Programs Group Centers for Medicare & Medicaid Services Baltimore, MD
  • Linda K Smith Deputy Assistant Secretary and Inter-Departmental Liaison Early Childhood Development Administration for Children and Families Washington, DC
  • Michael K. Yudin Acting Assistant Secretary for Special Education and Rehabilitative Services Office of Special Education and Rehabilitative Services U. S. Department of Education Washington, DC

Public Members

  • Idil Abdull Parent Co-Founder Somali American Autism Foundation Minneapolis, MN
  • James Ball, Ed.D., B.C.B.A.-D. President and CEO JB Autism Consulting Executive Chair, Board of Directors Autism Society Cranbury, NJ
  • Anshu Batra, M.D. Parent Developmental Pediatrician Our Special Kids Los Angeles, CA
  • Noah Britton, M.A. Self Advocate Adjunct Professor of Psychology Bunker Hill Community College Salem, MA
  • Sally Burton-Hoyle, Ed.D. Family Member Associate Professor Department of Special Education Eastern Michigan University Ypsilanti, MI
  • Matthew J. Carey, Ph.D. Parent Contributor, Left Brain Right Brain Blog San Jose, CA
  • Jose F. Cordero, M.D., M.P.H Dean University of Puerto Rico Graduate School of Public Health Rio Piedras, Puerto Rico
  • Jan M. Crandy Parent Case Manager Nevada State Autism Treatment Assistance Program Chair Nevada Commission on Autism Spectrum Disorders Las Vegas, NV
  • Geraldine Dawson, Ph.D. Professor Department of Psychiatry and Behavioral Sciences Duke University Medical Center Durham, NC
  • David S. Mandell, Sc.D. Associate Professor Department of Psychiatry and Pediatrics University of Pennsylvania School of Medicine Philadelphia, PA
  • Lyn Redwood, R.N., M.S.N. Parent Co-Founder, Vice President and Board Member Coalition for SafeMinds Tyrone, GA
  • Scott Michael Robertson, Ph.D. Self Advocate President and Vice Chair of Development Autistic Self Advocacy Network University Park, PA
  • John Elder Robison Self Advocate, Parent and Author Neurodiversity Scholar in Residence College of William and Mary Williamsburg, VA
  • Alison Tepper Singer, M.B.A. Parent and Family Member Founder and President Autism Science Foundation New York, NY
OARC logo
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National Institute of Mental Health
National Institutes of Health

Office of Autism Research Coordination Staff List

  • Susan Daniels, Ph.D. Director
  • Dawn A. Beraud, Ph.D. Policy Analyst
  • Ben Feldman, Ph.D. Science Policy Analyst
  • Amanda Garton, M.S., M.S.P.P. Presidential Management Fellow
  • Angelice Mitrakas, B.A. Management Analyst
  • Stephanie Mok, Ph.D. Policy Analyst
  • Karen Mowrer, Ph.D. Science Policy Analyst
  • Julianna Rava, M.P.H. Science Policy Analyst
  • Jeffrey Wiegand, B.S. Web Development Manager

Cover Design
Medical Arts Branch, Office of Research Services, National Institutes of Health

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

Suggested Citation
Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (IACC). 2013 IACC Autism Spectrum Disorder Research Portfolio Analysis Report. April 2017. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: http://iacc.hhs.gov/publications/portfolio-analysis/2013/.

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