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Portfolio Analysis Cover 2013
Portfolio Analysis Report
IACC Autism Spectrum Disorder Research
2013
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 5 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.

Analysis of Progress

 
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