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United States Government Accountability Office: 
GAO: 

Report to Congressional Requesters: 

November 2013: 

Federal Autism Activities: 

Better Data and More Coordination Needed to Help Avoid the Potential 
for Unnecessary Duplication: 

GAO-14-16: 

GAO Highlights: 

Highlights of GAO-14-16, a report to congressional requesters. 

Why GAO Did This Study: 

Autism—-a developmental disorder involving communication and social 
impairment-—is an important public health concern. From fiscal years 
2008 through 2012, 12 federal agencies awarded at least $1.4 billion 
to support autism research and other autism-related activities. The 
CAA directed the IACC to coordinate HHS autism activities and monitor 
all federal autism activities. It also required the IACC to develop 
and annually update a strategic plan for autism research. This plan is 
organized into 7 research areas that contain specific objectives. 

GAO was asked to examine federal autism efforts. In this report, GAO 
(1) analyzes the extent to which federal agencies fund potentially 
duplicative autism research, and (2) assesses the extent to which IACC 
and agencies coordinate and monitor federal autism activities. GAO 
analyzed agencies’ data and documents, and interviewed federal agency 
officials and select nonfederal IACC members. 

What GAO Found: 

Eighty-four percent of the autism research projects funded by federal 
agencies had the potential to be duplicative. Of the 1,206 autism 
research projects funded by federal agencies from fiscal years 2008 
through 2012, 1,018 projects were potentially duplicative because the 
projects were categorized to the same objectives in the Interagency 
Autism Coordinating Committee’s (IACC) strategic plan. Funding similar 
research on the same topic is sometimes appropriate—-for example, for 
purposes of replicating or corroborating results-—but in some 
instances, funding similar research may lead to unnecessary 
duplication. The potentially duplicative research projects included 
those funded by the Department of Defense (DOD), Department of 
Education (Education), National Science Foundation (NSF), and agencies 
within the Department of Health and Human Services (HHS)--
Administration for Children and Families, Agency for Healthcare 
Research and Quality, Centers for Disease Control and Prevention 
(CDC), Centers for Medicare & Medicaid Services, Health Resources and 
Services Administration, National Institutes of Health (NIH), and the 
Substance Abuse and Mental Health Services Administration. Each agency 
funded at least 1 autism research project in the same strategic plan 
objective as another agency. For example, 5 agencies awarded 
approximately $15.2 million for 20 autism research projects related to 
1 objective to test methods to improve dissemination, implementation, 
and sustainability of evidence-based interventions, services, and 
supports in diverse community settings. 

The IACC’s and federal agencies’ efforts to coordinate and monitor 
federal autism activities were limited. The IACC—-composed of federal 
and nonfederal members-—met regularly and issued several reports, such 
as a strategic plan and portfolio analysis-—a report that provides 
information on autism research projects, organized by the strategic 
plan objectives. The IACC has also released a companion database to 
its portfolio analysis. However, IACC members provided mixed views on 
the usefulness of the IACC’s meetings, strategic plan, and portfolio 
analysis in aiding coordination and monitoring. While three agencies—-
CDC, DOD, and NIH—-regularly used the committee’s strategic plan and 
portfolio analysis, others did not. Shortcomings in the data the IACC 
used for its portfolio analysis limited its ability to coordinate HHS 
autism activities and monitor federal autism activities—-as required 
by the Combating Autism Act of 2006 (CAA). For example, GAO found that 
the data used by the IACC was outdated, not tracked over time, 
inconsistent, and incomplete. These weaknesses limited the IACC’s 
ability to monitor its progress on its coordination and monitoring 
efforts—-which, in prior work, GAO established as a best practice for 
inter-agency collaboration, as well as a federal internal control 
standard. In addition, these weaknesses limited agencies’ ability to 
use these data to identify coordination opportunities and avoid the 
potential for unnecessary duplication. Such information is important 
because of the involvement of multiple agencies. Lastly, apart from 
their participation on the IACC, there were limited instances of 
agencies coordinating, and agencies did not have robust or routine 
procedures for monitoring federal autism activities. Per federal 
internal control standards, agencies should establish a means of 
communicating with other agencies; this is important to maximize the 
efficiency of the federal autism investment and minimize the potential 
for unnecessary duplication. 

What GAO Recommends: 

GAO is recommending that (1) HHS improve the usefulness of IACC data 
to enhance coordination and monitoring of federal autism activities, 
and (2) DOD, Education, HHS, and NSF improve their coordination of 
autism research. HHS disagreed with the first recommendation stating 
that it was already making adequate efforts. The agencies supported 
the need for improved coordination but, except for DOD, disputed that 
any duplication occurs. GAO continues to believe the recommendations 
are warranted as discussed in the report. 

View GAO-14-16. For more information, contact Marcia Crosse at (202) 
512-7114 or crossem@gao.gov. 

[End of section] 

Contents: 

Letter: 

Background: 

The Majority of Federally-Funded Autism Research Was Potentially 
Duplicative, while Non-Research Activities Were Not: 

The IACC's and Federal Agencies' Efforts to Coordinate and Monitor 
Federal Autism Activities Were Limited: 

Conclusions: 

Recommendations: 

Agency Comments and Our Evaluation: 

Appendix I: Methodology for Analyzing Potential Duplication of 
Federally Funded Autism Research and Other Activities: 

Appendix II: List of Interagency Autism Coordinating Committee (IACC) 
Reports: 

Appendix III: Federal Autism Research Projects by Interagency Autism 
Coordinating Committee Strategic Plan Objective: 

Appendix IV: Agencies' Non-Research Autism-Related Activities, Fiscal 
Years 2008 through 2011: 

Appendix V: Comments from the Department of Defense: 

Appendix VI: Comments from the Department of Education: 

Appendix VII: Comments from the Department of Health and Human 
Services: 

Appendix VIII: Comments from the National Science Foundation: 

Appendix IX: GAO Contact and Staff Acknowledgments: 

Table: 

Table 1: Number of Federal Agency Autism Research Projects and Funding 
by Interagency Autism Coordinating Committee Strategic Plan Objective, 
by Agency, Fiscal Years 2008 through 2012: 

Figures: 

Figure 1: Federal Funds Awarded for Autism Research Projects, Fiscal 
Years 2008 through 2012: 

Figure 2: Federal Funds Awarded for Non-Research Autism-Related 
Activities, Fiscal Years 2008 through 2011: 

Figure 3: Interagency Autism Coordinating Committee (IACC) Strategic 
Plan Research Areas, July 2012: 

Figure 4: Number of Federal Agencies' Autism Research Projects Funded, 
by Research Area, Fiscal Years 2008 through 2012: 

Abbreviations: 

ACF: Administration for Children and Families: 

ACL: Administration for Community Living: 

AHRQ: Agency for Healthcare Research and Quality: 

CAA: Combating Autism Act of 2006: 

CDC: Centers for Disease Control and Prevention: 

CMS: Centers for Medicare & Medicaid Services: 

DOD: Department of Defense: 

EPA: Environmental Protection Agency: 

HHS: Department of Health and Human Services: 

HRSA: Health Resources and Services Administration: 

IACC: Interagency Autism Coordinating Committee: 

LEND: Leadership Education in Neurodevelopmental and Other Related 
Disabilities: 

NIH: National Institutes of Health: 

NSF: National Science Foundation: 

OARC: Office of Autism Research Coordination: 

RePORTER: Research Portfolio Online Reporting Tools Expenditures and 
Results: 

SAMHSA: Substance Abuse and Mental Health Services Administration: 

[End of section] 

GAO:
United States Government Accountability Office: 
441 G St. N.W. 
Washington, DC 20548: 

November 20, 2013: 

Congressional Requesters: 

Autism is an important public health concern, according to the Centers 
for Disease Control and Prevention (CDC)--an agency within the 
Department of Health and Human Services (HHS). CDC estimates suggest 
that the prevalence of autism is increasing, and that at least 1 in 88 
children in the United States have been identified as having autism. 
[Footnote 1] Autism is a complex developmental disorder that begins 
during early childhood, characterized by impaired social interactions, 
problems with verbal and nonverbal communication, and repetitive 
behaviors, or by severely limited activities and interests. What is 
commonly known as autism is a group of disorders known as autism 
spectrum disorder that can range from mild to more severe in their 
symptoms.[Footnote 2] 

From fiscal year 2008 through fiscal year 2012, 12 federal agencies 
funded autism research and other autism-related activities.[Footnote 
3],[Footnote 4] For example, agencies funded research to identify the 
causes of autism, as well as training for health care professionals on 
identifying and diagnosing autism. From fiscal year 2008 through 
fiscal year 2012, these agencies spent at least $1.4 billion on autism 
research and other autism-related activities. 

To address growing concern about the increasing prevalence of autism 
and to stimulate research into possible autism causes and 
interventions, the Combating Autism Act of 2006 (CAA) was enacted in 
December of that year.[Footnote 5] The CAA reauthorized the 
Interagency Autism Coordinating Committee (IACC), which is a federal 
advisory committee that was initially established under the Children's 
Health Act of 2000.[Footnote 6] The CAA directs the IACC to coordinate 
all autism activities within HHS and to monitor federal activities 
related to autism. The IACC includes members representing 10 federal 
agencies--8 agencies within HHS, the Department of Defense (DOD), and 
the Department of Education (Education). In addition, there are 14 
nonfederal members who represent individuals with autism and parents 
of children with autism; as well as members of the autism advocacy, 
research, and service-provider communities.[Footnote 7] The CAA also 
requires the IACC to develop and annually update a strategic plan for 
autism research.[Footnote 8] The strategic plan is organized into 7 
research areas that contain specific short-and long-term research 
objectives. The National Institutes of Health (NIH)--an agency within 
HHS--created the Office of Autism Research Coordination (OARC) to 
provide administrative support to the IACC. On behalf of the IACC, 
OARC periodically collects data from agencies on the autism research 
they fund and helps agencies categorize this research to the specific 
strategic plan objectives. 

Having multiple agencies involved in autism research and other autism-
related activities can be advantageous, as agencies may be able to 
tailor programs to suit their specific missions and needs. In some 
instances, funding similar research on the same topic is appropriate 
and necessary; for example, for purposes of replicating or 
corroborating prior research results. However, it is important that 
agencies monitor federal autism efforts and coordinate similar actions 
to maximize their effectiveness and efficiency and avoid the potential 
for unnecessary duplication. You asked us to provide information on 
the extent to which federal autism activities are duplicative and the 
extent to which federal autism activities are coordinated. In this 
report, we: 

1. analyze the extent to which federal agencies fund potentially 
duplicative autism research and other autism-related activities, and: 

2. assess the extent to which the IACC and agencies coordinate and 
monitor federal autism activities. 

To analyze the extent to which federal agencies fund potentially 
duplicative autism research and other autism-related activities, we 
first identified the agencies funding such research and activities and 
collected data on the nature of the research or activities and the 
associated funding amounts. Specifically, we identified those federal 
agencies that funded autism research projects and autism-related 
activities from fiscal years 2008 to 2011 through interviews, review 
of related documentation, and database searches. We considered a 
federal agency to have funded autism research or an autism-related 
activity if the research project or activity was autism-specific or 
had an autism-specific component, and was supported by federal funds 
awarded under mechanisms such as grants, cooperative agreements, or 
contracts; or was research conducted by scientists in government 
laboratories, known as intramural research.[Footnote 9] We compared 
the agency data we collected to information collected by OARC on 
behalf of the IACC. We also included any agencies and the related 
research projects they funded in fiscal year 2012, as identified in 
data that agencies submitted to OARC.[Footnote 10] 

Next, to determine potential duplication in autism research, we 
identified research projects that were categorized to the same 
strategic plan objectives. For those projects that were not 
categorized to a specific objective, but were categorized to one of 
the seven research areas, we assessed duplication based on whether 
they were categorized to the same research area. Determining that 
projects were categorized to the same strategic plan objective or 
research area suggests potential, but not actual duplication. 
Determining actual duplication for research projects would require a 
more extensive review of voluminous and scientific data, and was 
beyond the scope of this study. 

Finally, we assessed whether there was actual duplication of non-
research autism-related activities using the framework we established 
in our previous work. This framework considers duplication to have 
occurred when two or more agencies fund the same activities that 
target the same users.[Footnote 11] To determine if the activities and 
targeted users were the same, we reviewed each activity's purpose and 
strategy for achieving that purpose and reviewed the targeted 
population of the activities. We assessed the reliability of the data 
we obtained by comparing agency data to data collected by OARC, 
following up with agency officials regarding discrepancies in the 
data, and gathering information from agencies on the internal controls 
they use when maintaining their data. We found the data reliable for 
our purposes. For more information on our scope and methodology for 
determining whether federal agencies fund potentially duplicative 
autism research and other autism-related activities, see appendix I. 

To assess the extent to which the IACC and agencies coordinate and 
monitor federal autism activities, we reviewed IACC documents, 
including the strategic plan. We also interviewed OARC officials and 
officials from 10 federal agencies. Eight of these agencies were IACC 
members. The other 2 agencies were not IACC members, but funded autism-
related research between fiscal years 2008 and 2012. We also 
interviewed select nonfederal IACC members.[Footnote 12] Our review of 
documents and interviews allowed us to determine the methods used by 
the IACC to coordinate HHS activities and monitor federal autism 
activities. It also allowed us to determine how agencies coordinate 
and monitor federal autism activities apart from the IACC to prevent 
unnecessary duplication. We assessed the IACC's and agencies' 
coordination and monitoring activities against criteria established by 
our prior work, including key practices for interagency coordination 
and collaboration, and federal internal control standards related to 
communicating with external entities, including other agencies, and 
measuring progress on organizational efforts, such as those 
established through strategic plans.[Footnote 13] 

We conducted this performance audit from December 2012 to November 
2013 in accordance with generally accepted government auditing 
standards. Those standards require that we plan and perform the audit 
to obtain sufficient, appropriate evidence to provide a reasonable 
basis for our findings based on our audit objectives. We believe that 
the evidence obtained provides a reasonable basis for our findings and 
conclusions based on our audit objectives. 

Background: 

Autism--a complex and pervasive developmental disability--begins 
during early childhood, although signs and symptoms vary.[Footnote 14] 
According to CDC, autism begins before age 3 and lasts throughout a 
person's life. Some children show signs of autism within the first few 
months of life. In others, symptoms might not be apparent until 24 
months or later. Still other children with autism seem to develop 
typically until 18 to 24 months of age and then stop gaining new 
skills or lose the skills they had. Signs and symptoms of autism 
include a child not responding to his or her name by 12 months; not 
pointing at objects to show interest by 14 months; avoiding eye 
contact and wanting to be alone; repeating words or phrases over and 
over; and flapping hands, rocking, or spinning in circles. Individuals 
with autism might have problems with showing or talking about their 
feelings and might also have trouble understanding the feelings of 
others. 

Diagnosing autism can be difficult, as there is no medical diagnostic 
test available. As a result, doctors consider a child's behavior and 
development to make a clinical diagnosis. By age 2, a diagnosis by an 
experienced professional can be considered very reliable. However, 
according to CDC, most children do not receive a diagnosis until after 
age 4. There is no single known cause of autism, but a variety of 
factors are suspected of causing or contributing to autism, including 
environmental, biological, and genetic factors. While there is no 
known cure, research shows that early intervention treatment services 
can greatly improve a child's development. Because of the complexity 
of this disorder, individuals with autism have diverse needs for 
medical and mental health care, as well as an array of educational and 
social services. 

To address growing concern about the increasing prevalence of autism 
and to stimulate research into possible autism causes and 
interventions, the CAA was enacted in December 2006. The CAA amended 
sections of the Children's Health Act of 2000--which required HHS to 
conduct activities related to autism research, surveillance, and 
coordination--and authorized the expansion of HHS's autism activities 
and funding for such activities through fiscal year 2011. The 
Combating Autism Reauthorization Act of 2011 reauthorized these 
activities and authorized funding through fiscal year 2014. 

In 2008, NIH created OARC to provide administrative support to the 
IACC. OARC assists the IACC in fulfilling the IACC's responsibilities 
established by the CAA. Among other things, it conducts analyses and 
prepares reports for the IACC; assists with the IACC's strategic 
planning and monitoring of autism activities; coordinates cross-agency 
efforts; gathers public input to inform the work of the IACC; 
disseminates information about the work of the IACC and autism 
research activities to the public, Congress, and other government 
agencies; and provides logistical support for IACC meetings. In 
addition to assisting the IACC, OARC produced a report to Congress on 
federal autism activities on behalf of the Secretary of Health and 
Human Services, as required by the CAA.[Footnote 15] 

The 12 federal agencies that funded autism research and other autism-
related activities between fiscal years 2008 and 2012 were DOD; 
Education; the Environmental Protection Agency (EPA); the National 
Science Foundation (NSF); and 8 agencies within HHS--Administration 
for Children and Families (ACF), Administration for Community Living 
(ACL), Agency for Healthcare Research and Quality (AHRQ), CDC, Centers 
for Medicare & Medicaid Services (CMS), Health Resources and Services 
Administration (HRSA), NIH, and Substance Abuse and Mental Health 
Services Administration (SAMHSA). With the exception of EPA, NSF, and 
SAMHSA, these agencies have representatives on the IACC.[Footnote 16] 
Eleven of these 12 agencies awarded approximately $1.2 billion to fund 
autism research projects from fiscal years 2008 through 2012, as shown 
in figure 1.[Footnote 17] NIH was the biggest supporter of autism 
research, awarding approximately 81 percent of the funding from fiscal 
years 2008 through 2012. 

Figure 1: Federal Funds Awarded for Autism Research Projects, Fiscal 
Years 2008 through 2012: 

[Refer to PDF for image: pie-chart] 

National Institutes of Health: $960,507,499; 
Centers for Disease Control and Prevention: $77,290,758; 
Department of Education: $48,671,086; 
Health Resources and Services Administration: $44,724,023; 
Department of Defense (DOD)[B]: $25,954,015; 
National Science Foundation: $15,076,379; 
Other agencies[A]: $10,693,207. 

Source: GAO analysis of data from federal agencies that funded autism 
research. 

[A] Other agencies are Administration for Children and Families (1 
project), Agency for Healthcare Research and Quality (5 projects), 
Centers for Medicare & Medicaid Services (4 projects), Environmental 
Protection Agency (1 project), and Substance Abuse and Mental Health 
Services (1 project). 

[B] DOD's fiscal year 2012 appropriation for its medical research 
programs, including autism, was available for obligation through the 
end of fiscal year 2013--September 30, 2013. At the time of our 
review, DOD had not submitted data on its fiscal year 2012 research 
projects in response to the Office of Autism Research Coordination's 
request. As a result, the funding amount for DOD does not include 
DOD's funding for fiscal year 2012 autism research. 

[End of figure] 

In addition, of the 12 agencies, 5 awarded approximately $204 million 
for non-research autism-related activities from fiscal years 2008 
through 2011, as shown in figure 2. 

Figure 2: Federal Funds Awarded for Non-Research Autism-Related 
Activities, Fiscal Years 2008 through 2011: 

[Refer to PDF for image: pie-chart] 

Health Resources and Services Administration: $129,831,122; 
Department of Education (Education): $60,083,918; 
Centers for Disease Control and Prevention (CDC): $9,814,517; 
Administration for Community Living (ACL): $2,627,959; 
Department of Defense: $1,264,542. 

Source: GAO analysis of data from federal agencies that funded autism-
related non-research activities. 

Notes: Most of Education's activities included projects that were not 
related to autism. The funding presented for Education represents the 
funding amounts that supported projects that were autism-specific or 
had a component to them that was autism-specific. 

With the exception of CDC, funding in this figure is based on the 
amount awarded to fund projects under the agencies' activities from 
fiscal year 2008 through fiscal year 2011. CDC funded one non-research 
activity--an awareness campaign--from fiscal years 2008 through 2011 
that was focused on autism and other developmental disabilities. The 
funding amount for CDC in this figure represents all funding for the 
activity, such as awards and activities conducted internally at the 
agency, with the exception of research--totaling approximately $1.7 
million. 

After ACL was created in 2012, management of one autism-related 
activity was moved from Administration for Children and Families to 
ACL. Because ACL currently manages the activity, it is attributed to 
ACL in the figure. 

[End of figure] 

Most of the autism research funded by the agencies is conducted by 
scientists at external research organizations--known as extramural 
research--and funded through mechanisms including grants, contracts, 
and cooperative agreements. To apply for research funding, an 
institution submits an application on behalf of a principal 
investigator--the individual who is responsible and accountable for 
conducting the research--in response to an agency's funding 
opportunity announcement.[Footnote 18] Some announcements are targeted 
to autism, while others are general funding opportunity announcements 
that may cover a number of topics, including autism, such as 
announcements soliciting biomedical research. Lastly, some agencies 
allow the submission of "unsolicited" or "investigator-initiated" 
applications.[Footnote 19] Agencies may also fund intramural research 
related to autism. 

Since the passage of the CAA in 2006, the IACC has issued several 
reports as a means to coordinate HHS autism activities and monitor 
federal autism activities, some of which were specifically required by 
the act, such as the strategic plan.[Footnote 20] The IACC published 
its first strategic plan in 2009. The most recent strategic plan was 
organized into seven questions that correspond to seven research 
areas. For example, the first question in the strategic plan--"When 
should I be concerned?"--corresponds to research related to the 
diagnosis of autism. Each research area contains specific short-and 
long-term research objectives.[Footnote 21] Over the years, more have 
been added, for a total of 78 objectives in the most recent plan. 
[Footnote 22] Figure 3 outlines the research areas and number of 
objectives. 

Figure 3: Interagency Autism Coordinating Committee (IACC) Strategic 
Plan Research Areas, July 2012: 

[Refer to PDF for image: illustrated table] 

Diagnosis: 
1. When should I be concerned? 
Topics covered: 
Diagnostic and screening tests, early signs, biomarkers, symptomology, 
subgroups; 
Total objectives: 9; 
Short-term: 6; 
Long-term: 3. 

Biology: 
2. How can I understand what is happening? 
Topics covered: 
Neural systems, molecular pathways, developmental trajectory, 
cognitive studies, immune and metabolic pathways, neuropathology, 
biosignatures, computational studies, co-occurring conditions, sensory 
and motor functions; 
Total objectives: 9; 
Short-term: 7; 
Long-term: 2. 

Causes: 
3. What caused this to happen and can it be prevented? 
Topics covered: 
Genetic risk factors, environmental risk factors, and the intersection 
of genetic and environmental risk factors, including epigenetics; 
Total objectives: 15; 
Short-term: 11; 
Long-term: 4. 

Treatments and interventions: 
4. Which treatments and interventions will help? 
Topics covered: 
Pharmacological, behavioral, educational, complementary, dietary, 
occupational, sensory-based therapies, technology-based interventions 
and supports, model system to identify molecular targets; 
Total objectives: 12; 
Short-term: 8; 
Long-term: 4. 

Services: 
5. Where can I turn for services? 
Topics covered: 
Utilization and access, evidence-based practices, cost-effective 
service delivery, practitioner training, family well-being, safety, 
community inclusion; 
Total objectives: 9; 
Short-term: 4; 
Long-term: 5. 

Lifespan issues: 
6. What does the future hold, particularly for adults? 
Topics covered: 
Adult interventions, service needs, transition services, vocational 
rehabilitation, adult diagnosis; 
Total objectives: 8; 
Short-term: 4; 
Long-term: 4. 

Infrastructure and surveillance: 
7. What other infrastructure and surveillance needs must be met? 
Topics covered: 
Surveillance and prevalence, research infrastructure, data tools, 
biobanks, research subject recruitment, research workforce 
development; 
Total objectives: 16[A]. 

Source: GAO analysis of data from the National Institute of Mental 
Health, Office of Autism Research Coordination on behalf of the 
Interagency Autism Coordinating Committee. 

Note: According to the IACC, the "topics covered" do not necessarily 
encompass all projects funded in each research area. 

[A] The IACC considers the 16 objectives for the research area, 
infrastructure and surveillance, to be both short-and long-term 
objectives. 

[End of figure] 

The IACC also produces an annual Autism Spectrum Disorder Research 
Portfolio Analysis Report, which is organized by the seven research 
areas of the strategic plan. It includes information on research 
projects funded by federal and nonfederal entities related to autism, 
including budget information, for a single fiscal year.[Footnote 23] 
The portfolio analysis also categorizes the research projects to the 
specific objectives in the strategic plan; and indicates if an 
objective has been fulfilled based on the funding of projects related 
to that objective in a given year.[Footnote 24] In order to prepare 
the portfolio analysis, OARC collects data from federal and nonfederal 
entities on the autism-related research projects they funded in a 
certain fiscal year. OARC works with these entities to categorize each 
project according to the research areas and objectives in the 
strategic plan. See appendix II for a description of the reports 
produced by the IACC. 

In July 2012, the IACC released a companion database to its portfolio 
analysis, referred to as the "IACC/OARC portfolio analysis web tool" 
(web tool).[Footnote 25] The web tool contains information on the 
specific research projects included in the 2008, 2009, and 2010 
portfolio analysis reports. For each project in a given fiscal year 
(i.e., 2008, 2009, or 2010), the web tool displays information, such 
as funding agency, principal investigator, funded amount, institution, 
project description, as well as the strategic plan research area and 
objective associated with the project. For example, users can sort 
projects by research area--such as diagnosis--and see all projects 
included in a particular year's portfolio analysis related to that 
research area. 

The CAA requires the IACC to meet twice annually, and it has met, on 
average, five times a year since 2008.[Footnote 26] These meetings 
often include presentations from experts about specific topics related 
to recent autism research and service activities, federal agency 
updates, as well as time to discuss general IACC business, such as how 
committee members want to move forward with specific tasks, including 
updating the strategic plan. The meetings also include time for public 
comments. The IACC subcommittees meet more frequently to further 
discuss activities and carry out related tasks. 

For several years, we have reported on the need for the federal 
government to strive for greater efficiency and effectiveness by 
eliminating duplication.[Footnote 27] This is particularity critical 
when multiple agencies are involved in the same programmatic or policy 
area, as is the case with autism research and other autism-related 
activities. Without effective monitoring and sharing of information 
among federal agencies about planned or funded autism research or 
other autism-related activities, agencies may use available funds 
inefficiently due to duplication of effort. Monitoring such research 
can be done by searching databases, such as Grants.gov and 
Clinicaltrials.gov, which contain information on federally funded 
grant programs and clinical research studies, respectively.[Footnote 
28] Also, some agencies have databases that contain information on the 
grants and activities they have funded, which are available to the 
public. For example, NIH's Research Portfolio Online Reporting Tools 
Expenditures and Results (RePORTER) database includes information on 
the expenditures and results of NIH funded research, including autism 
research. 

In addition, we have reported on the importance of coordination 
between federal agencies for many years. We have noted that strategic 
plans can be effective tools to drive agency collaboration and 
establish complementary goals and strategies for achieving 
results.[Footnote 29] Such plans can reinforce accountability for the 
collaboration by aligning agency goals and strategies with those of 
the collaborative efforts. In our prior work we have also established 
that measuring and reporting progress on collaborative efforts--such 
as through the use of short-and long-term strategic objectives--is a 
best practice for interagency collaboration, as well as an important 
internal control standard for the federal government.[Footnote 30] 

The Majority of Federally-Funded Autism Research Was Potentially 
Duplicative, while Non-Research Activities Were Not: 

We found that most of the autism research projects had the potential 
to be duplicative. The non-research projects did not. 

Most of the Autism Research Funded Was Potentially Duplicative: 

Of the 1,206 research projects funded by federal agencies from fiscal 
years 2008 through 2012, 84 percent--or 1,018 projects--had the 
potential to be duplicative.[Footnote 31] We found that each of the 11 
agencies that funded autism research during this period funded at 
least 1 autism research project in the same strategic plan objective 
as another agency, creating the potential for duplication. 
Additionally, some objectives were funded by multiple agencies. For 
example, NIH--which funded the majority of autism research projects--
funded projects in the same strategic plan objective as most of the 
other agencies. In many instances, 3 or more agencies funded research 
projects under the same objective. For example, 5 agencies--AHRQ, DOD, 
Education, HRSA, and NIH--awarded approximately $15.2 million for 20 
autism research projects related to 1 objective. This objective was to 
test methods to improve dissemination, implementation, and 
sustainability of evidence-based interventions, services, and supports 
in diverse community settings. Four agencies--DOD, Education, HRSA, 
and NIH--awarded approximately $4.1 million for eight autism research 
projects to develop at least two individualized community-based 
interventions to improve quality-of-life or health outcomes for the 
spectrum of adults with autism. See appendix III for the number of 
agency research projects and funding amounts for each strategic plan 
objective. In addition, many research projects, while not categorized 
to a specific strategic plan objective, were related to the same 
research area; and, therefore, may be potentially duplicative. For 
example, 3 agencies--DOD, NIH, and NSF--awarded approximately $173.0 
million for 264 projects in the biology research area, but these 
projects were not related to a specific objective.[Footnote 32] 

In addition to identifying potential duplication among the federally-
funded autism research projects, we obtained additional data from 
HRSA, AHRQ, and Education that allowed us to identify actual 
duplication in 4 of the research projects funded by these 
agencies.[Footnote 33] HRSA and AHRQ both funded systematic reviews of 
scientific papers looking at examining effective interventions for 
children and adolescents with autism.[Footnote 34] According to HRSA 
officials, 1 of the agency's grantees was charged with developing 
guidelines on effective autism interventions for children and 
adolescents. During this process, they examined 101 scientific papers. 
AHRQ officials contacted HRSA, and although HRSA's project was 
underway, AHRQ decided to fund 2 research projects: 1 project 
reviewing evidence from 183 papers on interventions for children, and 
1 project reviewing evidence from 32 papers on interventions for 
adolescents and young adults. Thirty-one of these papers were reviewed 
by both HRSA's and AHRQ's grantees. Although HRSA's project led to the 
development of guidelines for interventions on behavioral health of 
children and adolescents with autism while AHRQ's projects did not, 
the projects evaluated many of the same studies for the same 
population. In addition to the HRSA and AHRQ projects, Education 
funded a project examining an intervention model of applied behavior 
analysis for children with disabilities, including autism. The 2 
studies included in Education's project were also included in 1 of the 
AHRQ projects.[Footnote 35] 

Most agency officials we spoke with said that they consider the 
research funded by their agencies to be different than autism research 
funded by other agencies; however, we found that at least 4 agencies 
funded autism research in the same research area. The most commonly 
funded projects were in the area of biology (423 projects), followed 
by treatment and interventions (253 projects), and causes (159 
projects). NIH funded a majority of the autism research projects in 5 
of the 7 research areas. See figure 4 for the agencies that funded 
autism research projects by research area. 

Figure 4: Number of Federal Agencies' Autism Research Projects Funded, 
by Research Area, Fiscal Years 2008 through 2012: 

[Refer to PDF for image: stacked horizontal bar graph] 

Legend: 
Centers for Disease Control and Prevention (CDC); 
Department of Defense (DOD); 
Department of Education; (Education); 
Health Resources and Services Administration (HRSA); 
National Institutes of Health (NIH); 
National Science Foundation (NSF); 
Other agencies: (ACF, AHRQ, CMS, EPA, SMHSA). 

Number of autism research projects: 

Diagnosis; 
DOD: 11; 
Education: 1; 
NIH: 128; 
NSF: 10; 
Other agencies: 3; 
Total: 153-projects (7-agencies). 

Biology; 
DOD: 20; 
HRSA: 2; 
NIH: 392; 
NSF: 9; 
Total: 423-projects (4-agencies). 

Causes; 
CDC: 10; 
DOD: 12; 
HRSA: 2; 
NIH: 134; 
Other agencies: 1; 
Total: 159-projects (5-agencies). 

Treatments and|interventions; 
DOD: 15; 
Education: 34; 
HRSA: 9; 
NIH: 187; 
NSF: 7; 
Other agencies: 1; 
Total: 253-projects (6-agencies). 

Services; 
DOD: 2; 
Education: 8; 
HRSA: 15; 
NIH: 29; 
Other agencies: 4; 
Total: 58-projects (6-agencies). 

Lifespan issues; 
DOD: 3; 
Education: 5; 
HRSA: 5; 
NIH: 13; 
NSF: 3; 
Other agencies: 1; 
Total: 30-projects (6-agencies). 

Infrastructure and surveillance; 
CDC: 23; 
Education: 3; 
HRSA: 3; 
NIH: 68; 
Other agencies: 2; 
Total: 99-projects (5-agencies). 

Source: GAO analysis of data from the Interagency Autism Coordinating 
Committee (IACC) and federal agencies that funded autism research. 

Notes: From fiscal years 2008 through 2012, 6 autism projects were 
included in IACC data, but were categorized as "not specific to any 
research area," and 16 projects were not included in IACC data and, 
therefore, not categorized to the research areas. Furthermore, from 
fiscal years 2008 through 2011, CDC awarded funds for 9 research 
projects on autism and other developmental disabilities as part of its 
non-research autism-related activity, Learn the Signs. Act Early. CDC 
categorized the entire activity to the services research area; 
however, these 9 research projects are not included in the figure 
because it was unclear if the individual research projects under Learn 
the Signs. Act Early. would also be categorized to the services 
research area. DOD's research projects include projects funded from 
DOD's fiscal years 2008 through 2011 appropriations. DOD's fiscal year 
2012 appropriation for its medical research programs, including 
autism, was available for obligation through the end of fiscal year 
2013--September 30, 2013. At the time of our review, DOD had not 
submitted data on its fiscal year 2012 research projects in response 
to the Office of Autism Research Coordination's request. As a result, 
the number of autism research projects for DOD does not include DOD's 
projects for fiscal year 2012. 

The agencies included as "other agencies" in each research area are: 
Administration for Children and Families, Agency for Healthcare 
Research and Quality (AHRQ), and Substance Abuse and Mental Health 
Services Administration in diagnosis; Environmental Protection Agency 
in causes; AHRQ in treatments and interventions; AHRQ and Centers for 
Medicare & Medicaid Services (CMS) in services; AHRQ in lifespan 
issues; and CMS in infrastructure and surveillance. 

[End of figure] 

Non-Research Autism-Related Activities Were Not Duplicative: 

The five agencies that funded non-research autism-related activities 
from fiscal years 2008 through 2011--ACL, CDC, DOD, Education, and 
HRSA--funded activities that were not duplicative. 

HRSA and Education both funded training activities related to autism, 
but we determined that these activities were not duplicative. Among 
other things, HRSA's training activities train health care 
professionals, such as pediatric practitioners, residents, and 
graduate students, to provide evidence-based services to children with 
autism and other developmental disabilities and their families; and 
train specialists to provide comprehensive diagnostic evaluations to 
address the shortage of professionals who can confirm or rule out an 
autism diagnosis. Education's training activities focus on the 
education setting; for example, to prepare personnel in special 
education, related services, early intervention, and regular education 
to work with children with disabilities, including autism. 

Additionally, DOD and ACL both funded a publicly available website to 
provide information on services available to individuals with autism. 
However, we determined that these websites were not duplicative. DOD's 
website was developed for military families to provide them with 
information on the educational services that are close to specific 
military installations in select states. The ACL website is broader 
than the DOD website, focusing on individuals with autism and other 
developmental disabilities, their families, and other targeted key 
stakeholders concerned with autism. 

We determined that CDC is the only agency funding an awareness 
campaign on autism and other developmental disabilities. CDC's Learn 
the Signs. Act Early. campaign promotes awareness of healthy 
developmental milestones in early childhood, the importance of 
tracking each child's development, and the importance of acting early 
if there are concerns.[Footnote 36] This activity also includes an 
initiative that works with state, territorial, and national partners 
to improve early childhood systems by enhancing collaborative efforts 
to improve screening and referral to early intervention services; and 
to promote Learn the Signs. Act Early. messages and tools and improve 
early identification efforts in their state. 

See appendix IV for a list of non-research autism-related activities, 
as well as the purpose, strategy, and target populations of those 
activities. 

The IACC's and Federal Agencies' Efforts to Coordinate and Monitor 
Federal Autism Activities Were Limited: 

We found that the IACC members' views regarding the committee's 
efforts to coordinate HHS autism activities and monitor federal autism 
activities were mixed; and the IACC's efforts to coordinate HHS autism 
activities and monitor federal autism activities were limited by the 
data the IACC uses. Further, agencies' own efforts to coordinate and 
monitor autism activities were limited. 

Members' Views on IACC Coordination and Monitoring Efforts were Mixed: 

Members of the IACC provided mixed views on the usefulness of the 
IACC's efforts to coordinate HHS autism activities and monitor federal 
autism activities through its meetings and select documents. Many of 
the IACC members we spoke with said the IACC meetings aided 
coordination and monitoring. Specifically, five of the eight federal 
members--ACL, CDC, CMS, HRSA, and NIH--as well as two of the six 
nonfederal members we spoke with, stated that the IACC meetings aided 
coordination and monitoring among HHS and other federal IACC members 
by providing an opportunity for agencies to learn about others' 
activities and investments. However, five federal IACC members--AHRQ, 
CMS, DOD, Education, and HRSA--and one nonfederal member also stated 
that the information shared during the meetings is typically at a high 
level and the structure of the meetings provides little opportunity to 
discuss detailed information. Therefore, it would be difficult to 
prevent duplication of autism activities through the meetings alone. 
Education and CMS officials commented that more information sharing 
would be helpful. A CMS official stated that it would be beneficial 
for federal agencies to discuss autism activities they are considering 
funding. However, an Education official stated that while this type of 
exchange would be beneficial, the official cautioned about the type of 
information that could be shared in a public setting, such as an IACC 
meeting. For example, the official stated that providing information 
to the public on the focus and requirements of a funding opportunity 
announcement before it is officially released could provide some 
parties with a competitive advantage and could violate federal 
regulations. HRSA officials stated that, while specific projects are 
not usually discussed at meetings, the high-level information shared 
during meetings is useful; if they need more information they would 
contact the agency directly. For example, HRSA officials told us that, 
in one instance, officials from DOD contacted HRSA after hearing about 
HRSA's autism activities during an IACC meeting. In addition, 
following an IACC meeting, officials from NIH, CDC, and a nonfederal 
IACC member organization came together to fund a research project to 
investigate reports of elevated prevalence of autism among Somali 
American children in Minneapolis, Minn. 

Officials from three agencies--CDC, DOD, and NIH--told us that they 
use the strategic plan and portfolio analysis--which are key documents 
used by the IACC to coordinate and monitor federal autism activities--
when setting priorities for their autism programs and to learn of 
autism activities conducted by other agencies. For example, NIH 
officials stated that the specific objectives in the strategic plan 
allowed them to quickly develop announcements for new projects in 
fiscal years 2009 and 2010, for which the agency was appropriated 
additional funds under the American Recovery and Reinvestment Act of 
2009. In addition, within DOD, the Office of Congressionally Directed 
Medical Research Programs' Autism Research Program Integration Panel--
an advisory group that reviews autism research applications submitted 
to DOD--used information from the IACC's strategic plan and portfolio 
analysis, as well as other sources of information, when determining 
its autism research priorities.[Footnote 37] 

In contrast, officials from three agencies that are members of the 
IACC, and two agencies that are not IACC members, but fund autism 
research, told us that they do not regularly use these IACC 
documents.[Footnote 38] Some of the agencies stated that the type of 
research they fund is different from the type of research identified 
in the strategic plan. For example, although we found that NSF has 
funded projects related to autism, officials from NSF--which is not a 
member of the IACC--said that the agency does not specifically solicit 
autism research, so they do not consider the strategic plan when 
selecting research proposals. Education officials also stated that the 
type of autism-related research the agency funds involves the 
development and testing of interventions to improve developmental and 
educational outcomes, which do not fit with the strategic plan 
objectives. However, we found that the strategic plan did include a 
research area focused on interventions, as well as one related to 
lifespan issues--two areas that could encompass the type of autism-
related research funded by Education.[Footnote 39] Education officials 
also stated that, because the agency provides broad guidance for 
research applications, much of Education's research is investigator-
initiated; therefore, the agency would not be able to direct much 
research toward the objectives in the strategic plan. 

We also found that the IACC may have missed opportunities to 
coordinate federal autism activities and reduce duplication of effort 
and resources. Although the CAA requires the IACC to coordinate HHS 
autism activities and monitor federal autism activities, OARC 
officials told us that the prevention of duplication among individual 
projects in agency portfolios is not specified in the CAA as one of 
the IACC's statutory responsibilities, and therefore, is not a focus 
of the IACC. OARC officials explained that it is up to individual 
federal agencies to use the information contained in the IACC's 
strategic plan and portfolio analysis and the related web tool to 
prevent duplication. OARC officials acknowledged that the IACC could 
choose to use the portfolio analysis to make recommendations for 
increased interagency coordination, but to date this has not occurred. 
In terms of the role of OARC, OARC officials said they do not review 
the data that they collect on behalf of the IACC for duplication or 
for coordination opportunities. Instead, they said that they fulfill 
their role in assisting the IACC in its cross-agency coordination 
activities in other ways, such as by facilitating interagency 
communication and gathering information. 

Shortcomings in the IACC's Data Limited Its Ability to Coordinate and 
Monitor Federal Autism Activities: 

We found that the data the IACC used and reported in its portfolio 
analysis and related web tool had limitations that prevented the IACC 
from effectively monitoring and coordinating federal autism research 
and non-research activities. Specifically, we found that the data used 
by the IACC had the following limitations: 

* Outdated information. The most recent portfolio analysis and web 
tool contained data from 2010, which was not useful in identifying 
gaps in current research as they relate to the strategic plan 
objectives. For example, CDC officials commented that a more up-to-
date portfolio analysis would have been helpful when developing the 
2012 strategic plan update, which was prepared in the summer and fall 
of 2012. Additionally, agencies could not use these data to determine 
whether a prospective autism-related research project was potentially 
duplicative of a new project funded since 2010. 

* Not tracked over time. Information on the research projects relating 
to autism was reported for one year only and not for multiple years 
combined. The portfolio analysis and web tool included information on 
whether a certain objective in the strategic plan had been met for a 
particular year; however, information on the progress of the 
objectives over time had not been presented.[Footnote 40] OARC 
officials stated that the goal of the portfolio analysis and web tool 
has not been to compare funding year to year. 

* Inconsistent. The guidance and methodology for determining what 
projects constitute research has changed over the years. As a result, 
the projects included in the portfolio analysis and web tool have 
varied. Specifically, the 2010 portfolio analysis included projects 
HRSA funded under its training activities--training health 
professionals on evidenced-based services for those with autism and 
other developmental disabilities, and how to confirm or rule out an 
autism diagnosis. According to OARC officials, these projects were not 
included in prior years because they were not aware that HRSA's 
training projects could have possible relevance to the objectives in 
the strategic plan. Once OARC learned about these projects, OARC 
officials asked HRSA to include these projects in the portfolio 
analysis. Subsequently, in response to feedback from the IACC, OARC's 
recent request to agencies for 2011 and 2012 funding data included 
guidance stating that agencies should not include projects that solely 
involve the training of professionals.[Footnote 41] 

* Incomplete. We identified 16 autism research projects that were not 
included in the IACC data, such as a DOD Air Force study on autism 
gene sequencing and other topics, and autism research projects funded 
by Education and HRSA.[Footnote 42] For example, Education officials 
told us that the agency funded a study in 2008 to address challenges 
faced by geographically remote families in accessing effective 
intervention services for their young children diagnosed with autism; 
however, this project was not included in the IACC's data.[Footnote 43] 

Besides autism research projects, the portfolio analysis and strategic 
plan contain limited information on non-research autism-related 
activities, and the IACC did not have a mechanism to collect 
information on such activities. As part of its data collection for the 
portfolio analysis, the IACC sometimes obtained information from 
agencies on non-research autism-related activities that related to the 
strategic plan, which were subsequently included in the portfolio 
analysis. However, agencies, organizations, and individuals seeking 
information on non-research autism-related activities would likely not 
expect to find such information in the portfolio analysis and web tool 
because the titles and descriptions imply that they are focused on 
autism research.[Footnote 44] According to many nonfederal IACC 
members, as well as some federal members, the IACC has not given 
enough attention to the coordination and monitoring of non-research 
autism-related activities. As a result, a complete accounting of 
federal non-research activities was lacking. 

These data limitations hindered the IACC's efforts to coordinate HHS 
autism research and monitor the federal autism environment, as 
required by the CAA. We have previously reported that tracking and 
monitoring are key activities that can benefit interagency 
collaborative mechanisms, such as the IACC.[Footnote 45] In addition, 
federal internal control standards state that organizations should 
monitor and assess their performance over time to help ensure that 
they meet their goals and objectives. Federal internal control 
standards also call for data that allows for comparisons and 
assessments on organizational progress.[Footnote 46] However, the 
shortcomings in the IACC's data prevent accurate measurement of its 
effort to coordinate and monitor. For example, without assessing data 
over time, information on progress and gaps in autism research may be 
misleading and incomplete. We found that, when looking across multiple 
years, some agencies funded more autism research projects than were 
suggested in the associated strategic plan objective, whereas other 
objectives were not funded by an agency.[Footnote 47] In addition, 
inconsistency in the data made it difficult to accurately determine 
how much an increase in the funding of autism research was due to an 
actual increase in research versus the inclusion of more projects in 
the analysis. For example, in its most recent portfolio analysis, the 
IACC stated that, while many funders participating in the previous 
analysis increased their investment levels, the increase in autism 
research funding, when compared to the prior year's report, was 
largely attributed to the inclusion of more projects and funders. 
Lastly, we believe that such shortcomings in the data limited agencies 
ability to use these data to identify opportunities for coordination 
of resources or projects, or identify duplicative research that could 
have been avoided, consolidated, or eliminated. 

In fiscal year 2013, during the course of our review, the IACC took 
actions to reduce some of its data limitations. In January 2013, OARC, 
on behalf of the IACC, began collecting data on the autism research 
projects agencies funded in 2011 and 2012. OARC officials stated that 
they were collecting this data in order to have more recent 
information for the IACC to use when developing the 2013 strategic 
plan update. In addition, during its July 2013 committee meeting, the 
IACC discussed its intentions to update the strategic plan, including 
reviewing more recent agency data, as well as data over time. For the 
IACC's review, for example, OARC planned to prepare data on agencies' 
autism research projects funded from 2008 through 2012 for each 
research area and the objectives within those areas. When we asked 
whether this dataset would be made publicly available, OARC officials 
stated that the data would be published around the time the portfolio 
analysis is published, which OARC expects to be in the first quarter 
of calendar year 2014.[Footnote 48] In September 2013, OARC began 
providing certain IACC members with draft templates for how some of 
these data could be presented. The committee planned to develop the 
2013 update to the strategic plan in the fall of 2013 and expected to 
complete the report by December 31, 2013. 

Federal Agencies' Coordination and Monitoring of Autism Activities was 
Limited: 

We found limited instances of coordination among the 10 agencies that 
we reviewed and found that all of these agencies lacked robust or 
routine procedures for monitoring federal autism activities. Two 
agencies, CDC and HRSA, coordinated their autism activities by holding 
regular meetings to, for example, share information on project updates 
and explore potential opportunities for collaboration. These agencies 
coordinated their autism activities in a manner that was consistent 
with key collaboration practices to enhance and sustain coordination 
that we have identified in prior work.[Footnote 49] These key 
practices include agreeing on roles and responsibilities and 
establishing a means to operate across organizational boundaries. For 
example, officials from CDC and HRSA worked together with HRSA 
grantees to promote and evaluate CDC's awareness campaign for autism 
and other developmental disabilities. CDC officials said that they and 
HRSA officials have a good understanding of each other's roles and 
autism activities. 

A few agencies co-managed individual autism research projects and held 
joint meetings with their grantees.[Footnote 50] For example, EPA and 
NIH jointly funded research studying environmental exposures in 
relation to children's health and autism. Similarly, CDC and NIH 
jointly funded a research project to investigate reports of elevated 
prevalence of autism among Somali-American children in Minneapolis. 
According to CDC officials, the joint effort allowed CDC to provide 
scientific oversight and technical assistance to the grantee, which 
used CDC's surveillance methods, while NIH provided scientific 
consultation. The two agencies, along with a nonfederal organization, 
held regular meetings with their grantee. 

A few agencies also had officials that served on other agencies' 
advisory committees related to autism research or other autism-related 
activities. For example, DOD's Autism Research Program Integration 
Panel included a representative from NIH in fiscal years 2008 and 
2009, and recently included a representative from CDC who had been on 
the panel since fiscal year 2011. In addition, a CDC official served 
on an advisory council related to research HRSA funded on autism 
interventions for physical health; and a HRSA official served as a 
liaison on an advisory board for a non-research autism-related 
activity funded by Education. 

Agencies also provided examples of informal communications they had 
with other agencies. For example, although there were no regularly 
scheduled formal meetings with NIH, officials from CDC and HRSA stated 
that their staff have ongoing informal communication with NIH staff 
and may involve them in grant reviews, workshops, and meetings. CDC 
and HRSA may also preview NIH funding opportunity announcements. NIH 
officials told us that, when NIH is considering funding research 
similar to that of another agency, NIH staff discuss their plans with 
that agency to pre-empt unnecessarily duplicative research; NIH 
officials provided one example of a recent instance when they 
contacted another agency in this regard. However, NIH officials also 
stated that because many of the agency's research project 
applications, including those related to autism research, are 
investigator-initiated, coordination with other agencies during 
program development is not always possible. 

Nevertheless, we noted that agencies did not have robust and routine 
monitoring procedures or methods to ensure that duplication is 
minimized. As established in our recent duplication work, it is 
important for agencies that fund research on topics of common 
interest, such as autism, to monitor each others' activities in order 
to reduce the potential for unnecessary duplication.[Footnote 51] It 
is also a federal internal control standard that agencies establish a 
means of communicating with, and obtaining information from, other 
agencies that could impact their operations, performance, and resource 
allocations.[Footnote 52] Of the 10 agencies we spoke with, 5 agencies 
stated that they monitored federal autism activities by searching 
databases or websites, but those searches were limited and some 
agencies did not have formal policies or procedures that staff must 
follow. For example, DOD and NIH conducted searches to ensure that the 
principal investigator was not receiving funding from another agency 
for the same project.[Footnote 53] AHRQ also may conduct a similar 
search related to the principal investigator. However, these limited 
searches would not identify whether these agencies were funding 
similar projects led by different principal investigators. The 5 
agencies told us they conducted the following searches: 

* AHRQ officials told us that, before funding a systematic review, 
they reviewed a number of databases, such as RePORTER and [hyperlink, 
http://www.clinicaltrials.gov], a database that contains information 
on federally funded as well as non-federally funded studies. AHRQ 
officials said that they search the databases to determine if a 
similar systematic review has been conducted or if a major clinical 
trial is underway. In the latter instance, AHRQ may wait to fund a 
systematic review until the clinical trial is complete so it can be 
included in its review. AHRQ officials told us that for those projects 
that are not systematic reviews, they searched databases using the 
principal investigator's last name and the term "autism." 

* CDC officials stated that they informally review Grants.gov, the 
central grant identification and application portal for federal grant 
programs, when developing a new program announcement. 

* DOD officials told us that, before funding a project, they search 
the NIH database RePORTER--which includes projects funded by NIH--
using the principal investigator's name and other terms. DOD officials 
also stated that they review NIH's institutes' websites as a source of 
information when determining their autism research priorities. 

* HRSA officials said that they check RePORTER for similar autism 
projects on a quarterly basis using the search terms "autism" and 
"ASD;" however, the agency does not have written policies for the 
search. HRSA officials told us that they do not search other agencies' 
websites or databases on a regular basis. 

* NIH officials told us that they search their own databases, 
including a database that contains information about research funded 
by NIH, AHRQ, CDC, and other agencies. 

Several agency officials also told us that they rely on their peer 
reviewers, other experts, and project officers to have knowledge of 
the current autism research environment. For example, officials at 
AHRQ, DOD, Education, and NIH stated that they consider the opinions 
of peer reviewers, who are typically scientists or professors who 
review proposals for scientific merit, to determine whether 
applications may be duplicative of other research. DOD officials also 
told us that they rely on their Autism Research Program Integration 
Panel to be knowledgeable of research funded by other agencies. NIH 
officials stated that project officers have an in-depth understanding 
of the scientific subject matter related to their grant portfolios. 
[Footnote 54] According to NIH officials, their project officers keep 
abreast of the scientific literature, attend professional and 
scientific meetings, and interact with the principal investigator and 
other scientific staff at the grantee institution. 

Apart from their participation on the IACC, some agencies did not 
provide examples of actions they had taken to coordinate with or 
monitor other agencies' autism activities. For example, when we asked 
about the mechanisms used to coordinate and monitor autism activities, 
CMS stated that it interacted with other federal agencies through its 
IACC participation. Officials also stated that it is not common for 
CMS to fund autism research projects. In addition, although HRSA told 
us that one of their staff participated on an advisory committee for 
one Education non-research autism-related activity, Education 
officials did not provide examples of coordination efforts; Education 
is a member of the IACC. NSF, which is not an IACC member, does not 
coordinate or monitor its autism activities with other agencies to 
prevent unnecessary duplication. NSF officials stated that while they 
may fund research related to autism, they generally do not solicit 
autism research. 

Given that each agency we reviewed funded at least one autism research 
project in the same strategic plan objective as another agency from 
fiscal years 2008 through 2012, and some objectives were funded by 
multiple agencies, current coordination and monitoring efforts may be 
insufficient. For example, while DOD officials told us that they 
review NIH websites when determining their autism research priorities, 
we found that DOD funded autism research projects related to most of 
the same strategic plan objectives as NIH, which could potentially 
result in unnecessarily duplicative research.[Footnote 55] In 
addition, NSF--an agency that did not coordinate with other agencies 
regarding autism research--funded research projects that related to 
the same objectives as projects funded by both NIH and DOD. 

Conclusions: 

Funding similar research on the same topic area--such as autism--is 
sometimes appropriate and necessary; for example, for purposes of 
replicating or corroborating prior research results. In addition, 
having multiple agencies with different expertise involved in autism 
activities--both research and other related activities--can be 
advantageous. One such advantage is that agencies may be better able 
to tailor research or other programs to suit their specific missions 
and needs. However, having multiple agency involvement can also make 
it challenging to identify gaps and allocate resources across the 
federal government efficiently. Given that 12 federal agencies spent 
at least $1.4 billion on autism research and other autism-related 
activities from fiscal years 2008 through 2012, and that multiple 
agencies have funded autism research related to the same objectives, 
it is incumbent on the agencies to effectively coordinate and monitor 
each other's autism research. Not doing so could lead to numerous 
projects being funded to address a few specific areas within the realm 
of autism research--some of the projects having the potential to be 
unnecessarily duplicative--while other areas may be left unexplored. 

Interagency committees--such as the IACC--can aid agencies' efforts to 
coordinate and monitor. The IACC's charge to coordinate autism 
activities of HHS and to monitor federal autism activities provides 
the IACC with the opportunity to play an important role in maximizing 
the effectiveness and efficiency of the federal investment in autism 
activities, and in minimizing the inefficient use of federal resources 
due to unnecessary duplication of effort. However, the weaknesses in 
the IACC's data limits agencies' abilities to identify the autism 
research that has been recently funded, any gaps in or potential 
opportunities for funding, possible opportunities for efficiencies, or 
possible duplication. In addition, the focus of the strategic plan and 
portfolio analysis on autism research and limited focus on non-
research activities restricts the ability of the IACC to monitor non-
research autism-related activities funded by the federal government, 
and may affect agencies' abilities to identify duplicative efforts 
related to these activities. 

Apart from the IACC, there are limited instances of agencies 
independently coordinating their own autism activities. Agencies lack 
robust and routine procedures for monitoring the projects that other 
agencies are funding. Such monitoring would help avoid unnecessary 
duplication of autism research. It may also help identify potential 
opportunities for further coordination, since agencies can only 
coordinate with each other when they are aware of relevant research or 
other activities. Ultimately, agency coordination and monitoring would 
help ensure that scarce federal resources are used as efficiently as 
possible. 

Recommendations: 

To improve the usefulness of IACC data and enhance its efforts to 
coordinate HHS autism activities and monitor all federally funded 
autism activities, we recommend that the Secretary of Health and Human 
Services direct the IACC and NIH, in support of the IACC, to take the 
following three actions: 

* provide consistent guidance to federal agencies when collecting data 
for the portfolio analysis and web tool so that information can be 
more easily and accurately compared over multiple years; 

* create a document or database that provides information on non-
research autism-related activities funded by the federal government 
and make this document or database publicly available; and: 

* identify projects through its monitoring of federal autism 
activities--including OARC's annual collection of data for the 
portfolio analysis and the IACC's annual process to update the 
strategic plan--that may result in unnecessary duplication and thus 
may be candidates for consolidation or elimination, and identify 
potential coordination opportunities among agencies. 

To promote better coordination among federal agencies that fund autism 
research and avoid the potential for unnecessary duplication before 
research projects are funded, we recommend that the Secretary of 
Health and Human Services, the Secretary of Defense, the Secretary of 
Education, and the Director of NSF each determine methods for 
identifying and monitoring the autism research conducted by other 
agencies, including by taking full advantage of monitoring data the 
IACC develops and makes available. 

Agency Comments and Our Evaluation: 

We provided a draft of this report to DOD, Education, HHS, and NSF for 
comment, which are reprinted in appendixes V through VIII, 
respectively. Our first recommendation was directed to HHS 
exclusively. HHS did not concur with this recommendation. Our second 
recommendation was directed toward all four agencies. DOD agreed with 
this recommendation. Although the other three agencies did not 
explicitly state agreement with the recommendation, their comments 
suggested that they view the opportunity to enhance the coordination 
of federal autism research activities positively. These three agencies 
also expressed concern about certain of the report's conclusions as 
described in detail below. In addition to general comments, Education 
and HHS also provided technical comments, which we incorporated as 
appropriate. 

HHS did not concur with our first recommendation that the agency take 
three specific actions to improve the usefulness of the IACC data. 
First, HHS did not concur that the IACC and NIH should take action to 
provide consistent guidance to federal agencies when collecting data 
for the portfolio analysis. HHS commented that OARC has used a 
consistent methodology and provided consistent guidance to agencies 
when collecting data for the portfolio analysis on behalf of the IACC. 
It also emphasized that it has balanced the need for consistency with 
the need to be responsive to feedback from the IACC and from those 
participating in the portfolio analysis. While we agree with HHS that 
it is important to be responsive to feedback and make adjustments to 
guidance as necessary to improve data collection, we believe that 
annual changes of the type we observed are not productive. The 
exclusion of training projects in one year of data collection, their 
inclusion in the subsequent year, and their partial exclusion in the 
next year is a change in methodology and guidance that makes it 
difficult to analyze and interpret data over time. Additionally, OARC 
did not provide consistent guidance to organizations--both federal and 
nonfederal--that submit information for inclusion in the portfolio 
analysis. For example, in the year that OARC requested HRSA to include 
its training projects in the portfolio analysis, it did not make the 
same request of other organizations and its guidance did not mention 
that these specific types of projects should be included in the data 
submitted to OARC. We therefore continue to believe that guidance 
should be developed so that accurate, consistent, and meaningful 
comparisons of changes in federal funding of autism research can be 
made over time and used to inform future funding decisions. 

Second, HHS did not concur that the IACC and NIH should take action to 
create a document or database that provides information on non-
research autism-related activities. HHS commented that this 
information was already publicly accessible and cited a report to 
Congress published by OARC in December 2010.[Footnote 56] While this 
report contained information on federally funded autism activities 
from fiscal years 2006 through 2009, it did not include all of the non-
research autism-related activities we identified in our report. In 
addition, while helpful, the report is nonetheless a static document. 
There is no single repository for information on non-research autism-
related activities funded by the federal government since 2009--a 
shortcoming that has prevented effective monitoring of these 
activities since that year. HHS also commented that, as required by 
the reauthorization of the CAA, it would be providing a report to 
Congress to be released to the public in the fall of 2013. HHS stated 
that this report would include information on research, services, and 
other non-research autism activities that were supported by federal 
agencies from fiscal years 2010 through 2012. While this document 
could be a starting point from which the IACC could begin to regularly 
catalog non-research autism-related activities, we believe that having 
a document or database that contains current information on these 
activities is an important aspect of fulfilling the IACC's 
responsibility to monitor all federal autism activities, not just 
research. 

Third, HHS did not concur that, through its monitoring activities, the 
IACC and HHS should take action to identify projects that may result 
in unnecessary duplication and thus may be candidates for 
consolidation or elimination. However, HHS said that it will continue 
to support the IACC in its activities to coordinate HHS efforts and 
identify opportunities for cross-agency coordination. HHS stated that 
an analysis by the IACC to identify duplication would not likely 
provide the type of information on actual duplication needed by agency 
officials when making funding decisions. HHS said that even if the 
IACC further refined its analysis to identify several grants on the 
same general topic within each research objective as potentially 
duplicative, this type of information would lack adequate specificity 
to be useful to agency officials who are involved in the grant award 
process. We agree that the specific projects identified in the 
analysis proposed by HHS would need to be reviewed further to identify 
actual duplication--defined as projects with the same purpose, 
strategies, and target population that are not necessary to, for 
example, corroborate or replicate prior research results. However, we 
believe that the IACC's identification of such projects would be 
worthwhile as it could effectively lead to their further review by the 
funding agencies. In addition, HHS commented that it does not believe 
there is too much federal activity related to autism and that the IACC 
role should not include identification of autism-related projects for 
elimination. It should be noted that our report does not state--and 
should not be interpreted as suggesting--that there is too much 
federal activity related to autism. We recognize that autism is an 
important public health concern affecting a large number of people. 
However, this makes it all the more important that scarce federal 
resources be used wisely. Prudent stewardship requires a careful 
assessment of research spending. Many agencies currently devote 
considerable time to identifying and providing HHS with spending 
information and HHS invests in this data collection. However, we 
question the purpose of devoting federal resources to collecting these 
data, if they are not then used to ensure federal funds are used 
appropriately. The IACC data can be used to drill down to help 
identify unnecessary duplication and opportunities to enhance 
coordination. A thorough review of autism data is particularly 
important to ensure federal funds are used efficiently and 
effectively. While, we agree that the IACC does not have the authority 
to eliminate duplicative projects, it does have the responsibility to 
make recommendations to the Secretary of Health and Human Services. If 
unnecessary duplication or opportunities to enhance coordination 
between HHS agencies were identified, the IACC could make related 
recommendations that would carry important weight. 

DOD concurred with our second recommendation to improve coordination 
among federal agencies, and comments from Education, HHS, and NSF 
suggest that these agencies support improving the coordination of 
federal autism research activities. DOD, Education, and NSF commented 
that they intend to work with the IACC and other agencies to share 
information related to autism research. HHS agreed that there should 
be continued coordination to avoid unnecessary duplication across 
research projects. 

However, with the exception of DOD, the agencies included comments 
suggesting that they were concerned with the report's conclusion that 
some federal autism research projects had the potential to be 
duplicative. Specifically, the agencies stated the following: 

* Education did not concur with the conclusions that the majority of 
federally-funded autism research projects had the potential to be 
duplicative. The agency stated that, because the IACC's strategic plan 
objectives are broad, projects categorized under the same objective 
cannot be fairly judged as potentially duplicative without more 
substantial exposition. 

* HHS stated that research funded under the same objective does not 
necessarily indicate duplication, as the objectives represent broad 
and complex areas of research. 

* NSF stated that the categorization of its projects to, for example, 
the research area of biology, does not indicate that these projects 
are duplicative of other agencies' projects about the biology of 
autism. 

We stated in our draft report that our methodology of using the 
categorization of projects to the same strategic plan objective or 
research area does not indicate actual duplication; however, we added 
language to the final report to make this point clearer. We agree that 
more information on the specific projects funded within each objective 
would need to be assessed in order to determine actual duplication. 
However, the fact that research is categorized to the same objectives 
suggests that there may be duplicative projects being funded. 
Education, HHS, and NSF did not provide any information throughout the 
course of our work or in their comments indicating that they had 
reviewed these projects to ensure that they were not unnecessarily 
duplicative. 

In addition, two agencies--HHS and NSF--included comments suggesting 
that they were concerned about the report's conclusion that the 
coordination and monitoring of federal autism activities were limited. 
Specifically, 

* HHS did not concur with the conclusion that federal agencies' 
coordination and monitoring of autism activities was limited. HHS 
commented that it has extensive policies in place to prevent 
duplicative projects and that it would continue its procedures for 
avoiding duplication. HHS stated that an NIH research project 
applicant is required to indicate the other agencies to which the 
application has been submitted. In addition, the applicant is required 
to indicate the financial support received for the project. According 
to HHS, it is the responsibility of NIH staff to review this 
information to ensure that NIH is not funding the applicant for the 
same research project funded by another agency. HHS also cited an NIH 
database that is used extensively by NIH staff to obtain and manage 
information related to research project funding decisions. 

* NSF also commented on activities it undertakes to avoid duplication 
and stated that it takes steps to ensure that it does not fund the 
same research project by the same applicant if it is already supported 
by another agency. 

The procedures described by both agencies were outlined in our draft 
report. While important, they are not sufficiently comprehensive and 
are limited in that they only look to identify duplicative projects 
led by the same principle investigator. They do not identify project 
applications led by another principle investigator that may be 
unnecessarily duplicative of a project that has already been federally 
funded--a project with the same purpose, strategies, and target 
population that is not necessary to, for example, corroborate or 
replicate prior research results. For example, while the NIH database 
cited in HHS's comments could be a helpful coordination tool, our 
report points out that NIH's database search was limited in that its 
purpose was to ensure that a principal investigator was not receiving 
funding from another agency for the same project. The search would not 
identify similar projects led by different principal investigators. 
Therefore, we stand by our conclusion that these agencies' methods to 
monitor and coordinate autism activities are limited. 

HHS also commented that our draft report implied that it is wasteful 
for more than one federal agency to address a strategic plan 
objective. HHS said that the strategic plan objectives describe the 
minimum effort that would be required to address the complex issues 
set in each objective. Our report does not state this, nor do we 
believe that having more than one project per objective is 
inappropriate. Our report acknowledges that funding similar research 
on the same topic is sometimes appropriate and necessary. We agree 
that it may be beneficial to have multiple projects and agencies 
associated with the same strategic plan objective; however, we contend 
that it is important to carefully review the data to ensure that 
projects are indeed essential to achieve research goals and not 
unnecessarily duplicative. Using the data collected by HHS and 
analyzing it over time, provides an important opportunity for the IACC 
to determine whether its coordination efforts are successful. Doing so 
can provide important information on both progress and gaps in autism 
research, and identify areas of potential duplication to investigate 
further. For example, as we noted in our draft report, we found that 1 
objective--which recommended testing 4 methods to improve 
dissemination, implementation, and sustainability of evidenced-based 
interventions, services, and supports in diverse community settings--
had 20 projects associated with it that were funded by 5 different 
agencies from fiscal years 2008 through 2012. We believe it is 
important that these projects be reviewed further. While all of these 
projects are perhaps necessary to achieve research goals and are not 
duplicative, without conducting a thorough review of the data, it is 
not clear that this is, indeed, the case. 

Finally, HHS stated that our draft report was incorrect in stating 
that we had identified 16 projects that were omitted from the IACC's 
data. HHS said that the number we reported should have been 14. We 
disagree. We provided OARC with a list of 18 projects that we 
initially identified as missing from the IACC's data. OARC provided us 
with additional information for 2 of these projects. As a result, 
there were 16 projects--with total award funding of approximately $74 
million--that we identified that were not included in the IACC's data. 
Further, HHS explained that the projects that were not included in the 
IACC data were either projects that the agencies funded before the 
agencies had been included in the portfolio analysis, or projects that 
agencies did not submit to OARC during data collection for the 
portfolio analysis. We understand that, to a certain extent, OARC must 
rely on federal agencies to disclose the autism research projects they 
fund. However, 7 of these 16 projects--which were awarded funds 
totaling approximately $69 million--were NIH-funded projects, the 
agency in which OARC resides. 

We are sending copies of this report to the Secretary Health and Human 
Services, the Secretary of the Department of Defense, the Secretary of 
the Department of Education, the Director of the National Science 
Foundation, and to other interested parties. The report will also be 
available at no charge on the GAO website at [hyperlink, 
http://www.gao.gov]. 

If you or your staff have any questions about this report, please 
contact me at (202) 512-7114 or crossem@gao.gov. Contact points for 
our Office of Congressional Relations and Public Affairs may be found 
on the last page of this report. GAO staff who made major 
contributions to this report are listed in appendix IX. 

Signed by: 

Marcia Crosse: 
Director, Health Care: 

List of Requesters: 

The Honorable Tom Coburn, M.D. 
Ranking Member: 
Committee on Homeland Security and Governmental Affairs: 
United States Senate: 

The Honorable Ron Johnson: 
United States Senate: 

The Honorable Mike Lee: 
United States Senate: 

The Honorable Robert Menendez: 
United States Senate: 

[End of section] 

Appendix I: Methodology for Analyzing Potential Duplication of 
Federally Funded Autism Research and Other Activities: 

Identifying Autism Research Projects and Other Autism-Related 
Activities: 

First, we identified federal agencies that funded autism research and 
other autism-related activities from fiscal years 2008 through 2011 by 
interviewing the federal agencies on the Interagency Autism 
Coordinating Committee (IACC) and select nonfederal IACC members; 
reviewing IACC and agency documentation describing federal autism 
activities; and searching Grants.gov and the Catalog of Federal 
Domestic Assistance.[Footnote 57] We also included any agencies and 
the related research projects they awarded in fiscal year 2012, as 
identified in data that agencies submitted to the IACC. 

We considered a federal agency to have funded autism research or an 
autism-related activity if the research project or activity was autism-
specific or had an autism-specific component and was supported by 
federal funds awarded through mechanisms such as grants, cooperative 
agreements, or contracts, or was research conducted by scientists in 
government laboratories, known as intramural research. [Footnote 58] 
We excluded activities that provided a direct benefit to individuals 
with autism, such as insurance coverage to specific populations; 
housing assistance; and supplemental income. We also excluded funding 
provided to states to offer direct services to individuals with autism 
or their families, such as educational services. Additionally, we 
excluded federally funded workshops and meetings from our review. 
Furthermore, with the exception of intramural research, we excluded 
activities that the agencies undertook directly. These included, for 
example, the inclusion of information on an agency website or fact 
sheets. Finally, we excluded research projects and non-research autism-
related activities funded by nonfederal organizations. Based on our 
analysis, 12 agencies funded autism research and other autism-related 
activities between fiscal years 2008 and 2012 that met our criteria. 

We collected and reviewed the project information from each agency, 
such as research project numbers, award amounts, and project titles, 
where applicable, for fiscal years 2008 through 2011.[Footnote 59], 
[Footnote 60] We compared the agencies' research projects to the 
projects in the IACC's Autism Spectrum Disorder Portfolio Analysis 
Report and web tool data for fiscal years 2008, 2009, and 2010--the 
most recent portfolio analyses available at the time of our review--
and reconciled any differences with the agencies.[Footnote 61] In 
January 2013, while our work was in progress, we learned that the 
Office of Autism Research Coordination (OARC), on behalf of the IACC, 
requested fiscal years 2011 and 2012 autism research project data from 
the agencies for its forthcoming portfolio analysis and web tool, 
which we obtained from each agency to include in our 
analysis.[Footnote 62] We were unable to obtain fiscal year 2012 data 
for the Department of Defense (DOD). DOD's fiscal year 2012 
appropriation for its medical research programs, including autism, was 
available for obligation through the end of fiscal year 2013--
September 30, 2013. At the time of our review, DOD had not submitted 
data on its fiscal year 2012 research projects in response to OARC's 
request. As a result, our report does not include data on DOD's fiscal 
year 2012 autism research. 

The research projects and related award amounts included in our review 
differ from the research projects and funding amounts included in the 
portfolio analysis and web tool for several reasons: 

* The portfolio analysis and web tool included projects funded by 
nonfederal organizations, which we did not include in our review. 

* The portfolio analysis and web tool included research using broader 
criteria than that used in our review. For example, projects that 
focused on developmental disabilities in general may have been 
included in the portfolio analysis even if they did not have a 
component specific to autism. In addition, the portfolio analysis and 
web tool included some projects that we did not consider to be 
research, based on information collected and discussions with the 
agencies.[Footnote 63] 

* The portfolio analysis and web tool reported projects differently 
than what we used in our methodology. For example, a project was 
included twice in the portfolio analysis and web tool if the project 
received a supplemental award and base funding in the same year. In 
our analysis, we added the award amounts and counted the project once. 
[Footnote 64] 

* We identified more research projects than those included in the 
portfolio analysis web tool. 

Determining Potential Duplication of Autism Research Projects: 

We analyzed potential duplication using the portfolio analysis data, 
which categorized each project to the research areas and objectives in 
the IACC's Strategic Plan for Autism Spectrum Disorder Research. 
[Footnote 65] Objectives have been added to the strategic plan since 
its first issuance in 2009. For projects that span multiple years, we 
used the most recent year's strategic plan research area and objective 
categories.[Footnote 66] 

To determine potential duplication in autism research, we identified 
research projects that were categorized to the same strategic plan 
objectives. For those projects that were not categorized to a specific 
objective, but were categorized to one of the seven research areas, we 
assessed duplication based on whether they were categorized to the 
same research area. Determining that projects were categorized to the 
same strategic plan objective or research area suggests potential, but 
not actual duplication. Funding similar research on the same topic is 
sometimes appropriate and necessary; for example, for purposes of 
replicating or corroborating prior research results. Determining 
actual duplication for research projects would require a more 
extensive review of voluminous and scientific data, and was beyond the 
scope of this study. 

Determining Duplication of Non-Research Autism-Related Activities: 

To assess whether there was actual duplication of non-research autism-
related activities we used the framework we established in our 
previous work, which states that duplication occurs when two or more 
agencies fund the same activities that target the same users.[Footnote 
67] To determine if the activities were the same, we reviewed each 
activity's purpose and strategy for achieving that purpose and 
reviewed the targeted population of the activities. 

Data Reliability Assessment: 

We took several steps to ensure that the data used to produce this 
report were sufficiently reliable. In addition to comparing agency 
data to data collected by OARC and following up with agency officials 
regarding any discrepancies in the data, we also gathered information 
from agencies on the internal controls they use for maintaining their 
data. We determined that the data were sufficiently reliable for the 
purposes of our study. 

[End of section] 

Appendix II: List of Interagency Autism Coordinating Committee (IACC) 
Reports: 

Report: Strategic Plan for Autism Spectrum Disorder Research (2009, 
2010, 2011, 2012); 
Description: According to the IACC, the Strategic Plan provides a 
blueprint for autism research that is advisory to the Department of 
Health and Human Services and serves as a basis for partnerships with 
other agencies and private organizations involved in autism research 
and services. The Strategic Plan is organized around seven questions 
asked by individuals with autism and their families (such as "When 
should I be concerned?"). Each of the seven sections includes a 
description of what is generally known from autism research for that 
particular question and what gaps remain, followed by what was learned 
during the previous year. The report also sets up short-and long-term 
research objectives based on autism research opportunities. The 
Combating Autism Act of 2006 (CAA) requires that the Strategic Plan be 
updated on an annual basis. 

Report: Autism Spectrum Disorder Research Portfolio Analysis Report 
(2008, 2009, 2010)[A]; 
Description: The Portfolio Analysis features autism project and 
funding information for certain federal agencies and private 
organizations. According to officials within the National Institutes 
of Health's Office of Autism Research Coordination (OARC), the 
agencies and organizations in these reports have been identified by 
the IACC and OARC as being involved in autism research and have agreed 
to participate. According to the IACC, the intent of these analysis 
reports is to better inform the IACC and interested stakeholders about 
the funding landscape for a particular year. Additionally, the 
analysis examines the extent to which a particular year's funding and 
research topics align with the IACC's most recent Strategic Plan. The 
IACC reports that the Portfolio Analysis may also be used by federal 
agencies and private research organizations to help guide future 
funding priorities by outlining current gaps and opportunities in 
autism research, as well as serving to highlight current activities 
and research progress. 

Report: Summary of Advances in Autism Spectrum Disorder Research 
(2007, 2008, 2009, 2010, 2011, 2012); 
Description: Each year the IACC releases its list of scientific 
advances in autism research. As reported by the IACC, the report 
highlights studies on autism published in the previous year in peer-
reviewed journals and selected by members of the IACC. The number of 
studies featured over the years ranges from 20 to 54. The CAA requires 
that the IACC produce the Summary of Advances annually. 

Report: Autism Spectrum Disorder Research Publications Analysis: The 
Global Landscape of Autism Research[B]; 
Description: As reported by the IACC, this report describes several 
key aspects of worldwide autism research publications, which may be 
used to inform planning and strategic funding decisions for future 
autism research. Autism-related research articles published between 
1980 and 2010 were analyzed to identify historical trends and 
publication outputs across the seven questions and research areas of 
the 2011 IACC Strategic Plan. Information found in the research 
publications was also used to assess the institutions conducting 
autism research, funding organizations supporting the research 
publications, and the extent of collaboration between authors from 
different countries and research institutions. Additionally, measures, 
such as citation counts, were used as an assessment of the impact of 
the published research. OARC officials told us that there are no plans 
to update this report annually. 

Source: GAO review of IACC documents. 

Note: The years listed next to the report title are the years to which 
the report applies, which may not be the same year the report was 
published. For example, the 2010 Autism Spectrum Disorder Research 
Portfolio Analysis Report was published in July 2012. 

[A] OARC, National Institute of Mental Health, prepared this report on 
behalf of the IACC. For the 2009 report, OARC, National Institute of 
Mental Health, and Acclaro Research Solutions, Inc., prepared the 
report on behalf of the IACC. 

[B] OARC, National Institute of Mental Health, and Thomson Reuters, 
Inc. prepared this report on behalf of the IACC. 

[End of table] 

[End of section] 

Appendix III: Federal Autism Research Projects by Interagency Autism 
Coordinating Committee Strategic Plan Objective: 

Eleven federal agencies awarded approximately $1.2 billion to fund 
autism research projects from fiscal years 2008 through 2012.[Footnote 
68] These agencies are Department of Defense (DOD); Department of 
Education (Education); the Environmental Protection Agency (EPA); the 
National Science Foundation (NSF); and 7 agencies within the 
Department of Health and Human Services--Administration for Children 
and Families (ACF), Agency for Healthcare Research and Quality (AHRQ), 
Centers for Disease Control and Prevention (CDC), Centers for Medicare 
& Medicaid Services (CMS), Health Resources and Services 
Administration (HRSA), National Institutes of Health (NIH), and 
Substance Abuse and Mental Health Services Administration (SAMHSA). 
This appendix includes the autism research projects funded by these 
agencies, as categorized to the Interagency Autism Coordinating 
Committee's (IACC) strategic plan objectives. Research projects were 
categorized to the objective that best describes each project 
according to the strategic plan; however, research projects may not 
address all aspects of the objective. 

Table 1: Number of Federal Agency Autism Research Projects and Funding 
by Interagency Autism Coordinating Committee Strategic Plan Objective, 
by Agency, Fiscal Years 2008 through 2012: 

Research area 1: Diagnosis: 

Strategic Plan Research Area and Objectives[A]: 1.S.A; 
Description of Objective: 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; 
Agency: NIH; 
Number of Research Projects: 11; 
Funds Awarded: $12,863,563. 

Strategic Plan Research Area and Objectives[A]: 1.S.B; 
Description of Objective: 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 
autism, and general level of functioning by 2012; 
Agency: ACF; 
Number of Research Projects: 1; 
Funds Awarded: $100,000; 
Agency: AHRQ; 
Number of Research Projects: 1; 
Funds Awarded: $1,901,626; 
Agency: NIH; 
Number of Research Projects: 7; 
Funds Awarded: $4,620,220. 

Strategic Plan Research Area and Objectives[A]: 1.S.C; 
Description of Objective: 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; 
Agency: NIH; 
Number of Research Projects: 2; 
Funds Awarded: 455,081; 
Agency: SAMHSA; 
Number of Research Projects: 1; 
Funds Awarded: $450,000. 

Strategic Plan Research Area and Objectives[A]: 1.S.D; 
Description of Objective: Conduct at least two studies to understand 
the impact of early diagnosis on choice of intervention and outcomes 
by 2015; 
Number of Research Projects: No federal projects funded. 

Strategic Plan Research Area and Objectives[A]: 1.S.E; 
Description of Objective: 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 autism in a 
clinical setting by 2012; 
Agency: NIH; 
Number of Research Projects: 4; 
Funds Awarded: $5,282,439. 

Strategic Plan Research Area and Objectives[A]: 1.S.F; 
Description of Objective: Convene a workshop to examine the ethical, 
legal, and social implications of autism research by 2011. The 
workshop should define possible approaches for conducting future 
studies of ethical, legal, and social implications of autism research, 
taking into consideration how these types of issues have been 
approached in related medical conditions; 
Number of Research Projects: No federal projects funded. 

Strategic Plan Research Area and Objectives[A]: 1.L.A; 
Description of Objective: Identify behavioral and biological markers 
that separately, or in combination, accurately identify, before age 2, 
1 or more subtypes of children at risk for developing autism, and 
evaluate whether these risk markers or profiles can improve early 
identification through heightened developmental monitoring and 
screening by 2014; 
Agency: DOD; 
Number of Research Projects: 7; 
Funds Awarded: $3,401,458; 
Agency: NIH; 
Number of Research Projects: 34; 
Funds Awarded: $38,116,800. 

Strategic Plan Research Area and Objectives[A]: 1.L.B; 
Description of Objective: Develop at least five measures of behavioral 
and/or biological heterogeneity in children or adults with autism, 
beyond variation in intellectual disability, that clearly relate to 
etiology and risk, treatment response, and/or outcome by 2015; 
Agency: DOD; 
Number of Research Projects: 2; 
Funds Awarded: $694,989; 
Agency: NIH; 
Number of Research Projects: 35; 
Funds Awarded: $39,065,410; 
Agency: NSF; 
Number of Research Projects: 9; 
Funds Awarded: $8,602,000. 

Strategic Plan Research Area and Objectives[A]: 1.L.C; 
Description of Objective: Identify and develop measures to assess at 
least three "continuous dimensions" (e.g., social reciprocity, 
communication disorders, and repetitive/restrictive behaviors) of 
autism symptoms and severity that can be used by practitioners and/or 
families to assess response to intervention for people with autism 
across the lifespan by 2016; 
Agency: DOD; 
Number of Research Projects: 1; 
Funds Awarded: $615,000; 
Agency: NIH; 
Number of Research Projects: 13; 
Funds Awarded: $11,921,270. 

Strategic Plan Research Area and Objectives[A]: 1. Other; 
Description of Objective: Not specific to any objective within 
research area 1; 
Agency: DOD; 
Number of Research Projects: 1; 
Funds Awarded: $546,577; 
Agency: Education; 
Number of Research Projects: 1; 
Funds Awarded: $1,971,978; 
Agency: NIH; 
Number of Research Projects: 22; 
Funds Awarded: $14,291,166; 
Agency: NSF; 
Number of Research Projects: 1; 
Funds Awarded: $14,510. 

Research area 2: Biology: 

Strategic Plan Research Area and Objectives[A]: 2.S.A; 
Description of Objective: 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 autism 
during prenatal-postnatal life by 2010; 
Agency: DOD; 
Number of Research Projects: 2; 
Funds Awarded: $615,787; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $294,904; 
Agency: NIH; 
Number of Research Projects: 18; 
Funds Awarded: $8,873,917. 

Strategic Plan Research Area and Objectives[A]: 2.S.B; 
Description of Objective: Launch three studies that specifically focus 
on the neurodevelopment of females with autism, spanning basic to 
clinical research on sex differences by 2011; 
Agency: NIH; 
Number of Research Projects: 5; 
Funds Awarded: $5,320,506. 

Strategic Plan Research Area and Objectives[A]: 2.S.C; 
Description of Objective: 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; 
Number of Research Projects: No federal projects funded. 

Strategic Plan Research Area and Objectives[A]: 2.S.D; 
Description of Objective: 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; 
Agency: DOD; 
Number of Research Projects: 2; 
Funds Awarded: $269,444; 
Agency: NIH; 
Number of Research Projects: 70; 
Funds Awarded: $46,269,699. 

Strategic Plan Research Area and Objectives[A]: 2.S.E; 
Description of Objective: 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; 
Agency: DOD; 
Number of Research Projects: 5; 
Funds Awarded: $633,738; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $412,872; 
Agency: NIH; 
Number of Research Projects: 12; 
Funds Awarded: $16,788,241. 

Strategic Plan Research Area and Objectives[A]: 2.S.F; 
Description of Objective: Launch two studies that focus on prospective 
characterization of children with reported regression to investigate 
potential risk factors by 2012; 
Agency: NIH; 
Number of Research Projects: 1; 
Funds Awarded: $1,612,511. 

Strategic Plan Research Area and Objectives[A]: 2.S.G; 
Description of Objective: Support five studies that associate specific 
genotypes with functional or structural phenotypes, including 
behavioral and medical phenotypes (e.g., nonverbal individuals with 
autism and those with cognitive impairments) by 2015; 
Agency: DOD; 
Number of Research Projects: 2; 
Funds Awarded: $663,751; 
Agency: NIH; 
Number of Research Projects: 25; 
Funds Awarded: $29,749,080; 
Agency: NSF; 
Number of Research Projects: 1; 
Funds Awarded: $276,000. 

Strategic Plan Research Area and Objectives[A]: 2.L.A; 
Description of Objective: 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 autism, change over time as compared to typically developing 
people by 2020; 
Agency: NIH; 
Number of Research Projects: 8; 
Funds Awarded: $24,365,831;. 

Strategic Plan Research Area and Objectives[A]: 2.L.B; 
Description of Objective: Launch at least three studies that evaluate 
the applicability of autism phenotype and/or biological signature 
findings for performing diagnosis, risk assessment, or clinical 
intervention by 2015; 
Agency: NIH; 
Number of Research Projects: 6; 
Funds Awarded: $2,379,375. 

Strategic Plan Research Area and Objectives[A]: 2. Other; 
Description of Objective: Not specific to any objective within 
research area 2; 
Agency: DOD; 
Number of Research Projects: 9; 
Funds Awarded: $2,614,769; 
Agency: NIH; 
Number of Research Projects: 247; 
Funds Awarded: $167,289,408; 
Agency: NSF; 
Number of Research Projects: 8; 
Funds Awarded: $3,097,145. 

Research area 3: Causes: 

Strategic Plan Research Area and Objectives[A]: 3.S.A; 
Description of Objective: 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; 
Agency: NIH; 
Number of Research Projects: 18; 
Funds Awarded: $37,608,106. 

Strategic Plan Research Area and Objectives[A]: 3.S.B; 
Description of Objective: Within the highest-priority categories of 
exposures for autism, identify and standardize at least three measures 
for identifying markers of environmental exposure in biospecimens by 
2011; 
Agency: NIH; 
Number of Research Projects: 2; 
Funds Awarded: $116,367. 

Strategic Plan Research Area and Objectives[A]: 3.S.C; 
Description of Objective: Initiate efforts to expand existing large 
case-control and other studies to enhance capabilities for targeted 
gene-environment research by 2011; 
Agency: EPA; 
Number of Research Projects: 1; 
Funds Awarded: $2,271,501; 
Agency: NIH; 
Number of Research Projects: 7; 
Funds Awarded: $19,628,501. 

Strategic Plan Research Area and Objectives[A]: 3.S.D; 
Description of Objective: Enhance existing case-control studies to 
enroll racially and ethnically diverse populations affected by autism 
by 2011; 
Agency: NIH; 
Number of Research Projects: 2; 
Funds Awarded: $188,455. 

Strategic Plan Research Area and Objectives[A]: 3.S.E; 
Description of Objective: 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; 
Agency: NIH; 
Number of Research Projects: 4; 
Funds Awarded: $1,027,991. 

Strategic Plan Research Area and Objectives[A]: 3.S.F; 
Description of Objective: Initiate studies on at least 10 
environmental factors identified in the recommendations from the 2007 
Institute of Medicine report "Autism and the Environment: Challenges 
and Opportunities for Research" as potential causes of autism by 2012; 
Agency: CDC; 
Number of Research Projects: 2; 
Funds Awarded: $846,247; 
Agency: DOD; 
Number of Research Projects: 2; 
Funds Awarded: $227,360; 
Agency: NIH; 
Number of Research Projects: 3; 
Funds Awarded: Strategic $2,423,008. 

Strategic Plan Research Area and Objectives[A]: 3.S.G; 
Description of Objective: Convene a workshop that explores the 
usefulness of bioinformatic approaches to identify environmental risks 
for autism by 2011; 
Number of Research Projects: No federal projects funded. 

Strategic Plan Research Area and Objectives[A]: 3.S.H; 
Description of Objective: Support at least three studies of special 
populations or use existing databases to inform our understanding of 
environmental risk factors for autism 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 autism 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; 
Agency: CDC; 
Number of Research Projects: 1; 
Funds Awarded: $1,950,669; 
Agency: DOD; 
Number of Research Projects: 1; 
Funds Awarded: $143,162; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $383,243; 
Agency: NIH; 
Number of Research Projects: 4; 
Funds Awarded: $9,065,939. 

Strategic Plan Research Area and Objectives[A]: 3.S.I; 
Description of Objective: Support at least two studies that examine 
potential differences in the microbiome of individuals with autism 
versus comparison groups by 2012; 
Agency: DOD; 
Number of Research Projects: 1; 
Funds Awarded: $132,750. 

Strategic Plan Research Area and Objectives[A]: 3.S.J; 
Description of Objective: Support at least three studies that focus on 
the role of epigenetics in the etiology of autism, 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; 
Agency: DOD; 
Number of Research Projects: 4; 
Funds Awarded: $1,446,871; 
Agency: NIH; 
Number of Research Projects: 12; 
Funds Awarded: $17,650,924. 

Strategic Plan Research Area and Objectives[A]: 3.S.K; 
Description of Objective: 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 autism by 
2012; 
Agency: NIH; 
Number of Research Projects: 2; 
Funds Awarded: $1,582,038. 

Strategic Plan Research Area and Objectives[A]: 3.L.A; 
Description of Objective: Conduct a multi-site study of the subsequent 
pregnancies of 1,000 women with a child with autism to assess the 
impact of environmental factors in a period most relevant to the 
progression of autism by 2014; 
Agency: NIH; 
Number of Research Projects: 1; 
Funds Awarded: $15,154,483. 

Strategic Plan Research Area and Objectives[A]: 3.L.B; 
Description of Objective: Identify genetic risk factors in at least 50 
percent of people with autism by 2014; 
Agency: DOD; 
Number of Research Projects: 1; 
Funds Awarded: $142,113; 
Agency: NIH; 
Number of Research Projects: 47; 
Funds Awarded: $49,834,683. 

Strategic Plan Research Area and Objectives[A]: 3.L.C; 
Description of Objective: Determine the effect of at least five 
environmental factors on the risk for subtypes of autism in the 
prenatal and early postnatal period of development by 2015; 
Agency: NIH; 
Number of Research Projects: 4; 
Funds Awarded: $1,715,618. 

Strategic Plan Research Area and Objectives[A]: 3.L.D; 
Description of Objective: Support ancillary studies within one or more 
large-scale, population-based surveillance and epidemiological 
studies, including U.S. 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; 
Agency: CDC; 
Number of Research Projects: 7; 
Funds Awarded: $39,560,462; 
Agency: NIH; 
Number of Research Projects: 11; 
Funds Awarded: $24,271,103. 

Strategic Plan Research Area and Objectives[A]: 3. Other; 
Description of Objective: Not specific to any objective within 
research area 3; 
Agency: DOD; 
Number of Research Projects: 3; 
Funds Awarded: $328,091; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $99,235; 
Agency: NIH; 
Number of Research Projects: 17; 
Funds Awarded: $7,301,273. 

Research area 4: Treatments and interventions: 

Strategic Plan Research Area and Objectives[A]: 4.S.A; 
Description of Objective: Support at least three randomized controlled 
trials that address co-occurring medical conditions associated with 
autism by 2010; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $12,724,207; 
Agency: NIH; 
Number of Research Projects: 3; 
Funds Awarded: $906,662. 

Strategic Plan Research Area and Objectives[A]: 4.S.B; 
Description of Objective: Standardize and validate at least 20 model 
systems (e.g., cellular and/or animal) that replicate features of 
autism and will allow identification of specific molecular targets or 
neural circuits amenable to existing or new interventions by 2012; 
Agency: DOD; 
Number of Research Projects: 10; 
Funds Awarded: $3,490,339; 
Agency: NIH; 
Number of Research Projects: 71; 
Funds Awarded: $64,969,825. 

Strategic Plan Research Area and Objectives[A]: 4.S.C; 
Description of Objective: 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 autism by 2012; 
Agency: DOD; 
Number of Research Projects: 2; 
Funds Awarded: $1,967,113; 
Agency: NIH; 
Number of Research Projects: 8; 
Funds Awarded: $3,008,201. 

Strategic Plan Research Area and Objectives[A]: 4.S.D; 
Description of Objective: Complete two multi-site randomized 
controlled trials of comprehensive early intervention that address 
core symptoms, family functioning and community involvement by 2013; 
Agency: Education; 
Number of Research Projects: 3; 
Funds Awarded: $3,849,576; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $9,324,929; 
Agency: NIH; 
Number of Research Projects: 8; 
Funds Awarded: $22,409,176. 

Strategic Plan Research Area and Objectives[A]: 4.S.E; 
Description of Objective: 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; 
Funds Awarded: No federal projects funded. 

Strategic Plan Research Area and Objectives[A]: 4.S.F; 
Description of Objective: 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. Three trials in school-aged children and/or adolescents by 
2013. Three trials in adults by 2014; 
Agency: DOD; 
Number of Research Projects: 2; 
Funds Awarded: $1,905,130; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $564,816; 
Agency: NIH; 
Number of Research Projects: 18; 
Funds Awarded: $22,593,856; 
Agency: NSF; 
Number of Research Projects: 2; 
Funds Awarded: $585,833. 

Strategic Plan Research Area and Objectives[A]: 4.S.G; 
Description of Objective: Support at least five studies on 
interventions for nonverbal individuals with autism by 2012. Such 
studies may include: projects examining service-provision models that 
enhance access to augmentative and alternative communication 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 augmentative and 
alternative communication approaches for specific subpopulations of 
people with autism; and studies assessing access and use of 
augmentative and alternative communication for children and adults 
with autism who have limited or partially limited speech and the 
impact on functional outcomes and quality of life; 
Agency: Education; 
Number of Research Projects: 1; 
Funds Awarded: $594,514; 
Agency: NIH; 
Number of Research Projects: 10; 
Funds Awarded: $8,085,134. 

Strategic Plan Research Area and Objectives[A]: 4.S.H; 
Description of Objective: Support at least two studies that focus on 
research on health promotion and prevention of secondary conditions in 
people with autism by 2012. Secondary conditions of interest include 
weight issues and obesity, injury, and co-occurring psychiatric and 
medical conditions; 
Agency: NIH; 
Number of Research Projects: 2; 
Funds Awarded: $1,324,994. 

Strategic Plan Research Area and Objectives[A]: 4.L.A; 
Description of Objective: Complete at least three randomized 
controlled trials on medications targeting core symptoms in people 
with autism of all ages by 2014; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $571,147; 
Agency: NIH; 
Number of Research Projects: 13; 
Funds Awarded: $8,222,554. 

Strategic Plan Research Area and Objectives[A]: 4.L.B; 
Description of Objective: Develop interventions for siblings of people 
with autism with the goal of reducing the risk of recurrence by at 
least 30 percent by 2014; 
Agency: NIH; 
Number of Research Projects: 3; 
Funds Awarded: $890,088. 

Strategic Plan Research Area and Objectives[A]: 4.L.C; 
Description of Objective: 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 autism by 2015; 
Agency: DOD; 
Number of Research Projects: 1; 
Funds Awarded: $588,750; 
Agency: NIH; 
Number of Research Projects: 9; 
Funds Awarded: $6,517,612. 

Strategic Plan Research Area and Objectives[A]: 4.L.D; 
Description of Objective: 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; 
Agency: Education; 
Number of Research Projects: 22; 
Funds Awarded: $28,852,321; 
Agency: HRSA; 
Number of Research Projects: 3; 
Funds Awarded: $1,635,606; 
Agency: NIH; 
Number of Research Projects: 9; 
Funds Awarded: $5,676,567. 

Strategic Plan Research Area and Objectives[A]: 4. Other; 
Description of Objective: Not specific to any objective within 
research area 4; 
Agency: AHRQ; 
Number of Research Projects: 1; 
Funds Awarded: $575,000; 
Agency: Education; 
Number of Research Projects: 8; 
Funds Awarded: $3,196,869; 
Agency: HRSA; 
Number of Research Projects: 2; 
Funds Awarded: $912,968; 
Agency: NIH; 
Number of Research Projects: 33; 
Funds Awarded: $21,515,583; 
Agency: NSF; 
Number of Research Projects: 5; 
Funds Awarded: $1,656,731. 

Research area 5: Services: 

Strategic Plan Research Area and Objectives[A]: 5.S.A; 
Description of Objective: Support two studies that assess how 
variations in and access to services affect family functioning in 
diverse populations, including underserved populations, by 2012; 
Agency: HRSA; 
Number of Research Projects: 7; 
Funds Awarded: $2,295,114; 
Agency: NIH; 
Number of Research Projects: 5; 
Funds Awarded: $4,329,526. 

Strategic Plan Research Area and Objectives[A]: 5.S.B; 
Description of Objective: Conduct one study to examine how self-
directed community-based services and supports impact children, youth, 
and adults with autism across the spectrum by 2014; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $625,994. 

Strategic Plan Research Area and Objectives[A]: 5.S.C; 
Description of Objective: 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 autism across the spectrum and their families, (which may 
include access to augmentative and alternative communication 
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 autism, by 2015; 
Agency: CMS; 
Number of Research Projects: 1; 
Funds Awarded: $198,348; 
Agency: HRSA; 
Number of Research Projects: 2; 
Funds Awarded: $1,500,000. 

Strategic Plan Research Area and Objectives[A]: 5.S.D; 
Description of Objective: Support two studies to examine health, 
safety, and mortality issues for people with autism by 2012; 
Funds Awarded: No federal projects funded. 

Strategic Plan Research Area and Objectives[A]: 5.L.A; 
Description of Objective: Test four methods to improve dissemination, 
implementation, and sustainability of evidence-based interventions, 
services, and supports in diverse community settings by 2013; 
Agency: AHRQ; 
Number of Research Projects: 1; 
Funds Awarded: 1,486,234; 
Agency: DOD; 
Number of Research Projects: 2; 
Funds Awarded: $2,043,525; 
Agency: Education; 
Number of 3; 
Funds Awarded: $1,399,235; 
Agency: HRSA; 
Number of Research Projects: 4; 
Funds Awarded: $3,179,367; 
Agency: NIH; 
Number of Research Projects: 10; 
Funds Awarded: $7,090,682. 

Strategic Plan Research Area and Objectives[A]: 5.L.B; 
Description of Objective: Test the efficacy and cost-effectiveness of 
at least four evidence-based services and supports for people with 
autism across the spectrum and of all ages living in community 
settings by 2015; 
Agency: Education; 
Number of Research Projects: 1; 
Funds Awarded: $499,995. 

Strategic Plan Research Area and Objectives[A]: 5.L.C; 
Description of Objective: 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 autism and to promote interdisciplinary practice by 
2015; 
Agency: NIH; 
Number of Research Projects: 3; 
Funds Awarded: $2,245,210. 

Strategic Plan Research Area and Objectives[A]: 5.L.D; 
Description of Objective: Evaluate at least two strategies or programs 
to increase the health and safety of people with autism that 
simultaneously consider principles of self-determination and personal 
autonomy by 2015; 
Agency: Education; 
Number of Research Projects: 1; 
Funds Awarded: $592,007; 
Agency: NIH; 
Number of Research Projects: 1; 
Funds Awarded: $59,998. 

Strategic Plan Research Area and Objectives[A]: 5.L.E; 
Description of Objective: Support three studies of dental health 
issues for people with autism 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 autism 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 autism; one study 
evaluating pre-service and in-service training programs to increase 
skill levels in oral health professionals to benefit people with 
autism and promote interdisciplinary practice; 
Agency: NIH; 
Number of Research Projects: 3; 
Funds Awarded: $915,605. 

Strategic Plan Research Area and Objectives[A]: 5. Other; 
Description of Objective: Not specific to any objective within 
research area 5; 
Agency: AHRQ; 
Number of Research Projects: 1; 
Funds Awarded: $2,400,000; 
Agency: CMS; 
Number of Research Projects: 1; 
Funds Awarded: $145,007; 
Agency: Education; 
Number of Research Projects: 3; 
Funds Awarded: $1,444,552; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $793,013; 
Agency: NIH; 
Number of Research Projects: 7; 
Funds Awarded: $4,192,955. 

Research area 6: Lifespan issues: 

Strategic Plan Research Area and Objectives[A]: 6.S.A; 
Description of Objective: Launch at least two studies to assess and 
characterize variation in the quality of life for adults on the autism 
spectrum as it relates to characteristics of the service delivery 
system (e.g., safety, integrated employment, post-secondary 
educational opportunities, community inclusion, self-determination, 
relationships, and access to health services and community-based 
services), and determine best practices by 2012; 
Agency: HRSA; 
Number of Research Projects: 2; 
Funds Awarded: $700,000; 
Agency: NIH; 
Number of Research Projects: 3; 
Funds Awarded: $892,536; 
Agency: NSF; 
Number of Research Projects: 1; 
Funds Awarded: $217,996. 

Strategic Plan Research Area and Objectives[A]: 6.S.B; 
Description of Objective: 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 autism by 2013; 
Agency: Education; 
Number of Research Projects: 2; 
Funds Awarded: $3,500,000. 

Strategic Plan Research Area and Objectives[A]: 6.S.C; 
Description of Objective: Develop one method to identify adults across 
the autism 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; 
Number of Research Projects: No federal projects funded. 

Strategic Plan Research Area and Objectives[A]: 6.S.D; 
Description of Objective: 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 autism through provision 
of specialized training for direct care staff, parents, and legal 
guardians, including assessment and development of autism-specific 
training, if necessary, by 2015; 
Agency: NIH; 
Number of Research Projects: 1; 
Funds Awarded: $749,919. 

Strategic Plan Research Area and Objectives[A]: 6.L.A; 
Description of Objective: Develop at least two individualized 
community-based interventions that improve quality-of-life or health 
outcomes for the spectrum of adults with autism by 2015; 
Agency: DOD; 
Number of Research Projects: 3; 
Funds Awarded: $713,298; 
Agency: Education; 
Number of Research Projects: 1; 
Funds Awarded: $75,000; 
Agency: HRSA; 
Number of Research Projects: 
Funds Awarded: $835,499; 
Agency: NIH; 
Number of Research Projects: 3; 
Funds Awarded: $2,496,347. 

Strategic Plan Research Area and Objectives[A]: 6.L.B; 
Description of Objective: Conduct one study that builds on carefully 
characterized cohorts of children and youth with autism to determine 
how interventions, services, and supports delivered during childhood 
impact adult health and quality of life outcomes by 2015; 
Agency: NIH; 
Number of Research Projects: 3; 
Funds Awarded: $5,468,332. 

Strategic Plan Research Area and Objectives[A]: 6.L.C; 
Description of Objective: 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 autism spectrum over age 21 by 
2018. Topics should include: community housing for people with autism; 
successful life transitions for people with autism, 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 autism; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $793,024; 
Agency: NIH; 
Number of Research Projects: 1; 
Funds Awarded: $772,496. 

Strategic Plan Research Area and Objectives[A]: 6.L.D; 
Description of Objective: 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 autism spectrum 
by 2023; 
Agency: [Empty]; 
Number of Research Projects: No federal projects funded. 

Strategic Plan Research Area and Objectives[A]: 6. Other; 
Description of Objective: Not specific to any objective within 
research area 6; 
Agency: AHRQ; 
Number of Research Projects: 1: 
Funds Awarded: $625,000; 
Agency: Education; 
Number of Research Projects: 2; 
Funds Awarded: $729,398; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $100,000; 
Agency: NIH; 
Number of Research Projects: 2; 
Funds Awarded: $878,187; 
Agency: NSF; 
Number of Research Projects: 2; 
Funds Awarded: $393,237. 

Research area 7: Infrastructure and surveillance: 

Strategic Plan Research Area and Objectives[A]: 7.A; 
Description of Objective: 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 autism in 
health care, education, and social services by 2009; 
Number of Research Projects: No federal projects funded. 

Strategic Plan Research Area and Objectives[A]: 7.B; 
Description of Objective: Conduct an annual "State of the States" 
assessment of existing state programs and supports for people and 
families living with autism by 2011; 
Agency: CMS; 
Number of Research Projects: 2; 
Funds Awarded: $540,491. 

Strategic Plan Research Area and Objectives[A]: 7.C; 
Description of Objective: Develop and have available to the research 
community a means by which to merge or link databases that allow for 
tracking the involvement of people in autism research by 2010; 
Agency: NIH; 
Number of Research Projects: 1; 
Funds Awarded: $2,040,353. 

Strategic Plan Research Area and Objectives[A]: 7.D; 
Description of Objective: 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 autism and 
disease controls across the lifespan, which could serve as an online 
resource for quantitative morphological studies, by 2014; 
Agency: NIH; 
Number of Research Projects: 1; 
Funds Awarded: $2,303,588. 

Strategic Plan Research Area and Objectives[A]: 7.E; 
Description of Objective: Begin development of a web-based toolbox to 
assist researchers in effectively and responsibly disseminating their 
findings to the community, including people with autism, their 
families, and health practitioners, by 2011; 
Agency: NIH; 
Number of Research Projects: 1; 
Funds Awarded: $25,000. 

Strategic Plan Research Area and Objectives[A]: 7.F; 
Description of Objective: Create funding mechanisms that encourage 
rapid replication studies of novel or critical findings by 2011; 
Number of Research Projects: No federal projects funded. 

Strategic Plan Research Area and Objectives[A]: 7.G; 
Description of Objective: Develop a web-based tool that provides 
population estimates of autism prevalence for States based on the most 
recent prevalence range and average identified by the Autism and 
Developmental Disabilities Monitoring Network by 2012; 
Number of Research Projects: No federal projects funded. 

Strategic Plan Research Area and Objectives[A]: 7.H; 
Description of Objective: Create mechanisms to specifically support 
the contribution of data from 90 percent of newly initiated projects 
to the National Database for Autism Research, and link with other 
existing data resources by 2012; 
Agency: NIH; 
Number of Research Projects: 6; 
Funds Awarded: $9,583,653. 

Strategic Plan Research Area and Objectives[A]: 7.I; 
Description of Objective: Supplement existing Autism and Developmental 
Disabilities Monitoring Network sites to use population-based 
surveillance data to conduct at least five hypothesis-driven analyses 
evaluating factors that may contribute to changes in autism prevalence 
by 2012; 
Agency: CDC; 
Number of Research Projects: 14; 
Funds Awarded: $28,544,177. 

Strategic Plan Research Area and Objectives[A]: 7.J; 
Description of Objective: 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 autism and other developmental disabilities by 2013; 
Agency: CDC; 
Number of Research Projects: 1; 
Funds Awarded: $324,072; 
Agency: NIH; 
Number of Research Projects: 1; 
Funds Awarded: $150,000. 

Strategic Plan Research Area and Objectives[A]: 7.K; 
Description of Objective: Encourage programs and funding mechanisms 
that expand the research workforce, enhance interdisciplinary research 
training, and recruit early-career scientists into the autism field by 
2013; 
Agency: Education; 
Number of Research Projects: 3; 
Funds Awarded: $1,457,164; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $2,868,488; 
Agency: NIH; 
Number of Research Projects: 22; 
Funds Awarded: $7,479,509. 

Strategic Plan Research Area and Objectives[A]: 7.L; 
Description of Objective: Expand the number of Autism and 
Developmental Disabilities Monitoring sites in order to conduct autism 
surveillance in children and adults; conduct complementary direct 
screening to inform completeness of ongoing surveillance; and expand 
efforts to include autism subtypes by 2015; 
Agency: CDC; 
Number of Research Projects: 8; 
Funds Awarded: $4,381,177. 

Strategic Plan Research Area and Objectives[A]: 7.M; 
Description of Objective: 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 autism, which can be replicated in other communities, by 2015; 
Number of Research Projects: No federal projects funded. 

Strategic Plan Research Area and Objectives[A]: 7.N; 
Description of Objective: 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; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $670,000. 

Strategic Plan Research Area and Objectives[A]: 7.O; 
Description of Objective: Create an information resource for autism 
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; 
Agency: HRSA; 
Number of Research Projects: 1; 
Funds Awarded: $2,142,000; 
Agency: NIH; 
Number of Research Projects: 1; 
Funds Awarded: $997,747. 

Strategic Plan Research Area and Objectives[A]: 7.P; 
Description of Objective: 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; 
Agency: NIH; 
Number of Research Projects: 1; 
Funds Awarded: $1,588,780. 

Strategic Plan Research Area and Objectives[A]: 7.Other; 
Description of Objective: Not specific to any objective within 
research area 7; 
Agency: NIH; 
Number of Research Projects: 34; 
Funds Awarded: $52,663,973. 

Source: GAO analysis of data from the Interagency Autism Coordinating 
Committee (IACC) and federal agencies that funded autism research. 

Notes: The number of autism research projects in the table reflects a 
project that HRSA broke-up into 7 sub-projects and categorized into 
different objectives for fiscal years 2010, 2011, and 2012. This 
project was not broken out in previous years; therefore, all funding 
for the project is attributed to objective 4.S.A for fiscal years 2008 
and 2009. NIH jointly funded 1 autism research project with CDC and 1 
project with EPA. These joint projects are counted separately in the 
total number of autism research projects for each of these agencies 
because the projects were awarded funding from different agencies. 
Additionally, from fiscal years 2008 through 2012, 6 autism projects 
were included in IACC data, but were categorized as "not specific to 
any research area," and 16 projects were not included in IACC data 
and, therefore, not categorized to the research areas. Furthermore, 
from fiscal years 2008 through 2011, CDC awarded funds for 9 research 
projects on autism and other developmental disabilities as part of its 
non-research autism-related activity, Learn the Signs. Act Early. CDC 
categorized the entire activity to the services research area; 
however, these 9 research projects are not included in the table 
because it was unclear if the individual research projects under Learn 
the Signs. Act Early. would also be categorized to the services 
research area. DOD's research projects include projects funded from 
DOD's fiscal years 2008 through 2011 appropriations. DOD's fiscal year 
2012 appropriation for its medical research programs, including 
autism, was available for obligation through the end of fiscal year 
2013--September 30, 2013. At the time of our review, DOD had not 
submitted data on its fiscal year 2012 research projects in response 
to OARC's request. As a result, the number of autism research projects 
for DOD does not include DOD's projects for fiscal year 2012. 

When collecting and analyzing data, we included a project in the 
fiscal year in which it was awarded funds, even if funds remained 
available for obligation in future fiscal years--or, as is the case 
with DOD, the fiscal year of the appropriation from which the project 
or activity was awarded funds. For example, if a project was ongoing 
in another fiscal year, but did not receive an award in that year, we 
included the project in the fiscal year in which it received an award 
only. AHRQ and CMS each awarded one contract under which multiple 
autism-related projects were carried out. Education and SAMHSA also 
awarded contracts, of which an autism project was one component. 
Funding is not broken out in these contracts by project; therefore, 
the award amounts that we report for the AHRQ, CMS, Education, and 
SAMHSA autism projects under each contract are the agencies' estimates 
of the overall contract awards that were intended to support these 
projects. 

[A] The strategic plan objective numbers are composed of the following 
components: the number indicates the strategic plan question, or 
research area, that the objective relates to; for strategic plan 
questions 1 through 6, the "S" and "L" indicate whether the objectives 
are short-term or long-term; and the final letter refers to the 
specific objective. Each of the 7 research areas includes an "Other" 
category. Although this category is not included in the strategic plan 
as an objective, it is used to categorize autism research that relates 
to a specific research area, but not a specific objective. 

[End of table] 

[End of section] 

Appendix IV: Agencies' Non-Research Autism-Related Activities, Fiscal 
Years 2008 through 2011: 

Five agencies funded non-research autism-related activities from 
fiscal year 2008 through 2011--Administration for Community Living 
(ACL), Centers for Disease Control and Prevention (CDC), Department of 
Defense (DOD), Department of Education (Education), and Health 
Resources and Services Administration (HRSA). The agencies funded 
activities that we categorized by the following activity type: 
awareness campaign, information dissemination, training, and other 
types of activities. This appendix includes a list of each activity, 
by agency and by activity type. Also included is the amount of funding 
awarded by the agency--that was related to autism--under each activity 
between fiscal years 2008 and 2011; as well as a brief description of 
the primary purpose, strategy for achieving that purpose, and target 
population of each activity.[Footnote 69] 

ACL: Information Dissemination Activity: 

Autism NOW: National Autism Resource and Information Center: 

* Funding: $2.6 million: 

* Purpose: Gather, organize, and provide diverse stakeholders with 
readily accessible, high-quality resources and information related to 
community-based services that support independent living and self-
determination, treatment protocols that promote community-based 
experiences (e.g., education, employment, recreation, transportation, 
early intervention, and child care), and evidence-based interventions. 

* Strategy: Website provides information and links to resources 
related to four main components: (1) at home, (2) on the job, (3) in 
the classroom, and (4) in the community. The website also offers 
webinars and blogs on various topics related to autism and other 
developmental disabilities. 

* Target Population: Individuals with autism and other developmental 
disabilities, their families, and other targeted stakeholders 
concerned with autism. 

CDC: Awareness Campaign/Information Dissemination Activity: 

Learn the Signs. Act Early. 

* Funding: $9.8 million[Footnote 70] 

* Purpose: Improve early identification of children with autism and 
other developmental disabilities so children and families can get the 
services and support they need as early as possible. 

* Strategy: The program is made up of three components: (1) the health 
education campaign promotes awareness of healthy developmental 
milestones in early childhood, the importance of tracking each child's 
development, and the importance of acting early if there are concerns; 
(2) the Act Early Initiative works with state, territorial, and 
national partners to improve early childhood systems by enhancing 
collaborative efforts to improve screening and referral to early 
intervention services, and to promote Learn the Signs. Act Early. 
messages and tools, and improve early identification efforts in their 
states and territories; and (3) the research and evaluation component 
improves campaign materials and implementation activities, and 
increases the understanding of the factors that influence early 
identification and referral. 

* Target Population: Parents, early educators, and health care 
providers. 

DOD: Information Dissemination Activity: 

Extension & Military Partnership Autism Project: 

* Funding: $1.3 million: 

* Purpose: Assessment of educational services for children with 
autism, emotional/behavioral disorders, and intellectual disabilities 
near military installations; and national review of best practices 
around educational support for children with the identified 
disabilities. Data is used to update the current online Education 
Directory for Children with Special Needs, which provides assignment 
personnel and families of military dependents with information they 
need to make informed assignment decisions. 

* Strategy: Website consists of two main components that provide tools 
and resources to help with the transition to a new military 
installation: (1) the Early Intervention Directory focuses on early 
intervention services for children from birth to 3 years old; and (2) 
the School-Age Directory focuses on education services for children 
with special needs, 3 to 21 years of age. 

* Target Population: Military families, who have children with autism 
or other developmental disabilities, using educational services in 
selected states. 

Education: Training Activities: 

Personnel Development to Improve Services and Results for Children 
with Disabilities: 

* Funding: $42.4 million: 

* Purpose: To help address state-identified needs for highly qualified 
personnel by preparing personnel in special education, related 
services, early intervention, and regular education to work with 
children with disabilities; and to ensure that those personnel have 
the skills and knowledge--derived from practices that have been 
determined through research and experience to be successful--needed to 
serve these children. This could include preparing personnel to work 
with children with autism and their families. 

* Strategy: This activity supports two types of personnel preparation 
projects. (1) Projects designed to prepare special education early 
intervention, or related services personnel to serve as higher 
education faculty and researchers. These projects culminate in a 
doctoral degree or provide postdoctoral learning opportunities. (2) 
Projects designed to prepare special education, early intervention, or 
related services, direct service providers or administrators to work 
in state educational agencies, lead agencies, local educational 
agencies, early intervention services programs, or schools. They 
culminate in a baccalaureate, master's, education specialist, or 
doctoral degree; or state certification, endorsement, or licensure. 
The projects may provide specialization in conducting autism research 
or providing services for children with autism and their families. 

* Target Population: Scholars in special education, early 
intervention, and related services programs. 

Personnel Development to Improve Services and Results for Children 
with Disabilities; National Professional Development Center on Autism 
Spectrum Disorders: 

* Funding: $4 million: 

* Purpose: Provides resources, professional development, and technical 
assistance to help address state-identified needs for highly qualified 
personnel in special education, related services, early intervention, 
and regular education to work with infants, toddlers, and children 
with disabilities; and ensure that those personnel have the necessary 
skills and knowledge, derived from practices that have been determined 
through scientifically based research and experience, to be successful 
in serving those children. 

* Strategy: The project goals are organized around four content areas: 
(1) content development, (2) professional development, (3) technical 
assistance, and (4) evaluation. Content development involves 
translating information about evidence-based practices--or educational 
interventions--for children with autism into resources for service 
providers. Professional development entails providing training to 
state professional development providers and practitioners, as well as 
establishing training sites that model evidence-based practices in 
participating states. Technical assistance includes providing ongoing 
site-based training and establishing a network of professional 
development sites, trainees, and professional consultants. Evaluation 
involves collecting follow-up data on the use of evidence-based 
practices, practitioner skills, and child and family outcomes. 

* Target Population: States' departments of education receiving funds 
under Part B and state lead agencies under Part C of the Individuals 
with Disabilities Education Act, and those that they provide 
professional development to, such as teachers and practitioners who 
serve individuals from birth through 21 years of age with autism. 
[Footnote 71] 

State Personnel Development Grants Program: 

* Funding: $6.5 million: 

* Purpose: Assist state educational agencies in reforming and 
improving their systems for personnel preparation and professional 
development in early intervention, education, and transition services 
in order to improve results for children with disabilities. 

* Strategy: Supports implementation of a State Personnel Development 
Plan. This plan must identify and address the state and local needs 
for the personnel preparation and professional development of 
personnel, as well as individuals who provide direct supplementary 
aids and services to children with disabilities. The projects must use 
evidence-based professional development practices that will increase 
implementation of evidence-based practices and result in improved 
outcomes for children with disabilities; provide ongoing assistance to 
personnel receiving professional development that supports the 
implementation of evidence-based practices; and use technology to more 
efficiently and effectively provide ongoing professional development 
to personnel, including to personnel in rural areas and to other 
populations, such as personnel in urban or high-need local educational 
agencies. 

* Target Population: State educational agencies in the 50 states, the 
District of Columbia, the Commonwealth of Puerto Rico, Guam, Virgin 
Islands, American Samoa, and the Commonwealth of the Northern Mariana 
Islands that have a State Personnel Development Plan and those 
personnel they train, such as teachers, administrators, and early 
intervention providers. 

Rehabilitation Continuing Education Program: 

* Funding: $2.8 million: 

* Purpose: This program is designed to ensure that skilled personnel 
are available to serve the rehabilitation needs of individuals with 
disabilities. It is also designed to provide support to the public 
vocational rehabilitation system; provide advice, technical support, 
and training to the state vocational rehabilitation agencies and their 
community partners. 

* Strategy: There are 10 regional Technical Assistance and Continuing 
Education centers that serve either a federal region or another 
geographical area and provide for a broad integrated sequence of 
training activities that focus on meeting recurrent and common 
training needs of employed rehabilitation personnel throughout a multi-
state geographical area. One center has developed materials to train 
vocational rehabilitation staff on autism. These materials are made 
available to other Technical Assistance and Continuing Education 
centers and to state vocational rehabilitation agencies for staff 
training purposes. 

* Target Population: State vocational rehabilitation agencies and the 
professionals they train. 

Education: Other Activity Types: 

Developing Hispanic-Serving Institutions Program-Title V: 

* Funding: $0.3 million: 

* Purpose: To assist Hispanic-serving institutions to expand 
educational opportunities for, and improve the attainment of, Hispanic 
students. It also enables these institutions to expand and enhance 
their academic offerings, program quality, and institutional stability. 

* Strategy: Activities supported include: scientific or laboratory 
equipment for teaching; construction or renovation of instructional 
facilities; faculty development; purchase of educational materials; 
academic tutoring or counseling programs; funds and administrative 
management; joint use of facilities; endowment funds; distance 
learning academic instruction; teacher education; and student support 
services. 

* Target Population: Hispanic students and the postsecondary 
institutions that serve them. 

Fund for the Improvement of Education: 

* Funding: $1.6 million: 

* Purpose: To support nationally significant programs to improve the 
quality of elementary and secondary education at the state and local 
levels, and help all students meet challenging state academic content 
standards and student achievement standards. 

* Strategy: Types of projects funded include activities to promote 
systemic education reform at the state and local levels, including 
scientifically based research, development, and evaluation designed to 
improve student academic achievement at the state and local levels; 
and strategies for effective parent and community involvement. 

* Target Population: Students: 

Fund for the Improvement of Postsecondary Education Congressionally 
Directed Projects: 

* Funding: $1.4 million: 

* Purpose: Address critical national needs and support Education's 
mission of increasing access to quality postsecondary education. 

* Strategy: These are noncompetitive grants that Education manages 
pursuant to Congress' direction to provide such grants to certain 
recipients for specified purposes and in specified amounts. 

* Target Population: Individuals or institutions involved in or 
impacted by postsecondary education. 

Technology and Media Services for Individuals with Disabilities 
program: Steppingstones of Technology Innovation for Children with 
Disabilities: 

* Funding: $1.0 million: 

* Purpose: (1) Improve results for children with disabilities by 
promoting the development, demonstration, and use of technology; (2) 
support educational media service activities designed to be of 
educational value in the classroom setting to children with 
disabilities; and (3) provide support for captioning and video 
description that are appropriate for use in the classroom setting. 

* Strategy: Develop, implement, and evaluate innovative technology 
approaches designed to improve results for children with disabilities. 
Phase 1 projects must develop, refine, and test the feasibility of 
specific technology-based approaches. Phase 2 projects must subject 
technology-based approaches to rigorous field-based research to 
determine their effectiveness. 

* Target Population: Children served under the Individuals with 
Disabilities Education Act, including children with autism. 

HRSA: Training Activities: 

Developmental-Behavioral Pediatrics Training Program: 

* Funding: $7.3 million: 

* Purpose: The primary goal is to train the next generation of leaders 
in developmental-behavioral pediatrics; and provide pediatric 
practitioners, residents, and medical students with essential 
biopsychosocial knowledge and clinical expertise. The program also 
supports continuing education for pediatricians and other providers to 
implement evidence-based interventions for autism and other 
developmental disabilities. 

* Strategy: The 3-year program curriculum includes course work and 
clinical exposure to psychosocial and biological sciences, growth and 
development, adaptation, injury prevention, disease prevention, and 
health promotion. Projects are also encouraged to cosponsor, with 
child psychiatry, an ongoing Collaborative Office Rounds group as a 
training experience for fellows and a continuing education experience 
for community providers. Grantees also provide continuing education 
activities for practicing physicians and are encouraged to offer 
technical assistance and consultation to pediatric residency training 
programs so that they can improve their own developmental-behavioral 
program components. 

* Target Population: Fellows in developmental-behavioral pediatrics 
preparing for leadership roles as teachers, investigators, and 
clinicians advancing the field of developmental-behavioral pediatrics; 
pediatric practitioners, residents, and medical students. 

Leadership Education in Neurodevelopmental and Other Related 
Disabilities (LEND) Training Program: 

* Funding: $107.2 million: 

* Purpose: Improve the health of children who have, or are at risk for 
developing, neurodevelopmental and other related disabilities by 
providing high quality interdisciplinary graduate leadership training 
to child health professionals from diverse backgrounds and preparing 
those professionals to assume leadership roles. This includes 
supporting the training of individuals who can provide screening, 
diagnostic evaluation, and evidence-based interventions for autism and 
other developmental disabilities. 

* Strategy: Provides interdisciplinary leadership training and 
encourages providers to think holistically about the needs of children 
with autism and other developmental disabilities, as well as their 
families. The training curriculum includes graduate education at the 
master's, doctoral, and postdoctoral training levels, with an emphasis 
on developing a knowledge and experience base that includes: (1) 
knowledge of all aspects of neurodevelopmental and related 
disabilities, including autism; (2) acquisition of interdisciplinary 
team skills; and (3) knowledge of the family environment and cultural 
competency. 

* Target Population: Trainees are individuals working toward a 
graduate degree across 14 disciplines--including medicine, dentistry, 
psychology, social work, nutrition, language and motor therapies, 
audiology, genetics, health administration, special education, and 
nursing--or are enrolled in a postgraduate program with an emphasis on 
infants, children, and adolescents with special health care needs. 
Trainees show promise to become leaders in the material and child 
health field in the areas of teaching, research, clinical practice, 
and/or administration and policymaking. 

National Combating Autism Interdisciplinary Training Resource Center: 

* Funding: $2.5 million: 

* Purpose: Improve the health of children who have, or are at risk for 
developing, autism and other developmental disabilities by providing 
technical assistance to LEND and Developmental-Behavioral Pediatrics 
grantees to better train professionals to utilize valid and reliable 
screening tools for diagnosing or ruling out autism and provide 
evidence-based interventions for children. 

* Strategy: The center supports LEND and Developmental-Behavioral 
Pediatrics grantees by providing technical assistance, disseminating 
information and resources, and providing program coordination to 
promote collaboration across the grantees. 

* Target Population: LEND and Developmental-Behavioral Pediatrics 
grantees. 

HRSA: Other Activity Types: 

State Implementation and Planning Grants: 

* Funding: $11.8 million: 

* Purpose: Improve access to comprehensive, coordinated health care 
and related services by implementing state plans to improve the system 
of services. 

* Strategy: Although the plans vary widely by state, common elements 
include a focus on partnerships between professionals and families of 
children and youth with autism; access to a culturally competent 
family-centered medical home; access to adequate health insurance and 
financing of services; early and continuous screening for autism and 
other developmental disabilities; community services organized for 
easy use by families; and transition services for youth entering adult 
health care. 

* Target Population: States with an existing plan for improving the 
system of services for children with autism and developmental 
disabilities. 

State Public Health Coordinating Center: 

* Funding: $1.1 million: 

* Purpose: Improve the health of children who have, or are at risk for 
developing, autism and other developmental disabilities. 

* Strategy: Coordinating with the state implementation and planning 
grantees and developing a strategy for defining, supporting, and 
monitoring the role of state public health agencies in assuring early 
and timely identification, diagnosis, and intervention. 

* Target Population: State implementation and planning grantees, and 
broader state public health programs. 

[End of section] 

Appendix V: Comments from the Department of Defense: 

The Assistant Secretary of Defense: 
Health Affairs: 
1200 Defense Pentagon: 
Washington, DC 20301-1200: 

October 4, 2013: 

Ms. Marcia Crosse: 
Director, Health Care: 
U.S. Government Accountability Office: 
441 G Street, NW: 
Washington, DC 20548: 

Dear Ms. Crosse: 

This letter is the Department of Defense's (DoD) response to the 
Government Accountability Office (GAO) Draft Report, GAO-14-16, 
"Federal Autism Activities: Better Data and More Coordination Needed 
to Help Avoid the Potential for Unnecessary Duplication," dated 
September 11, 2013 (GAO Code 291093). Thank you for the opportunity to 
review and comment on the draft report. After careful review, we 
concur with the draft report findings and conclusion. The DoD will 
participate and cooperate with the Interagency Autism Coordinating 
Committee (IACC), the National Institutes of Health, and other federal 
agencies in efforts to prevent unnecessary duplication of federal 
autism research activities. Such efforts will include a determination 
of methods for identifying and monitoring the autism research 
conducted by other agencies, including taking full advantage of 
monitoring data the IACC develops and makes available. 

My points of contact on this matter are Dr. Terry Rauch (Functional) 
and Mr. Gunther Zimmerman (Audit Liaison). Dr. Rauch may be reached at 
(703) 681-8390, or Terry.Rauch@ha.osd.mil. Mr. Zimmerman may be 
reached at (703) 681-4360, or Gunther.Zimmerman@dha.mil. 

Signed by: 

Jonathan Woodson, M.D. 

GAO Draft Report Dated September 11, 2013: 
GAO-14-16 (GAO Code 291093): 

"Federal Autism Activities: Better Data And More Coordination Needed 
To Help Avoid The Potential For Unnecessary Duplication" 

Department Of Defense Comments To The GAO Recommendation: 

Recommendation 1: To improve the usefulness of the Interagency Autism 
Coordinating Committee (IACC) data and enhance its efforts to 
coordinate Health and Human Services (HHS) autism activities and 
monitor all federally funded autism activities, we recommend that the 
Secretary of HHS direct the IACC and National Institutes of Health 
(NIH), in support of IACC, to take the following three actions: 

* Provide consistent guidance to federal agencies when collecting data 
for the portfolio analysis and web tool so that information can be 
more easily and accurately compared over multiple years; 

* Create a document or database that provides information on non-
research autism-related activities funded by the federal government 
and make this publicly available; and; 

* Through its monitoring of federal autism activities--including The 
Office of Autism Research Coordination's annual collection of data for 
the portfolio analysis and the IACC's annual process to update the 
strategic plan—identify projects that may result in unnecessary 
duplication and thus may be candidates for consolidation or 
elimination, and identify potential coordination opportunities among 
agencies. 

DoD Response: Overall, the Department concurs with the draft report 
findings and conclusion and has no additional comments at this time. 

Recommendation 2: To promote better coordination among federal 
agencies that fund autism research and avoid the potential for 
unnecessary duplication before research projects are funded, we 
recommend that the Secretary of HHS, the Secretary of Defense, the 
Secretary of Education, and the Director of National Science 
Foundation each determine methods for identifying and monitoring the 
autism research conducted by other agencies, including by taking full 
advantage of monitoring data the IACC develops and makes available. 

DoD Response: The DoD will participate and cooperate with IACC, NIH, 
and other federal agencies in efforts to prevent unnecessary 
duplication of federal autism research activities. Such efforts will 
include a determination of methods for identifying and monitoring the 
autism research conducted by other agencies, including taking full 
advantage of monitoring data the IACC develops and makes available. 

[End of section] 

Appendix VI: Comments from the Department of Education: 

United States Department of Education: 
Office of Special Education and Rehabilitative Services: 
400 Maryland Ave. S.W. 
Washington, DC 20202-2500: 
[hyperlink, http://www.ed.gov] 

October 21, 2013: 

Ms. Marcia Crosse: 
Director: 
Health Care: 
U.S. Government Accountability Office: 
441 G Street, NW: 
Washington, DC 20548: 

Dear Ms. Crosse: 

I am writing to provide the U.S. Government Accountability Office 
(GAO) with comments from the U.S. Department of Education (Department) 
on the draft report, "Federal Autism Activities: Better Data and More 
Coordination Needed to Help Avoid the Potential for Unnecessary 
Duplication" (GAO-14-16). The Department appreciates the work that 
went into this study. The draft report contains two recommendations.
Recommendation 1: To improve the usefulness of IACC data and enhance 
its efforts to coordinate HHS autism activities and monitor all 
federally funded autism activities, we recommend that the Secretary of 
Health and Human Services direct the IACC and NIH, in support of the 
IACC, to take the following three actions: 

* provide consistent guidance to federal agencies when collecting data 
for the portfolio analysis and web tool so that information can be 
more easily and accurately compared over multiple years; 

* create a document or database that provides information on non-
research autism-related activities funded by the federal government 
and make this publicly available; and; 

* through its monitoring of federal autism activities--including 
OARC's annual collection of data for the portfolio analysis and the 
IACC's annual process to update the strategic plan--identify projects 
that may result in unnecessary duplication and thus may be candidates 
for consolidation or elimination, and identify potential coordination 
opportunities among agencies. 

Response: This three-part recommendation mentions the Interagency 
Autism Coordinating Committee (IACC), the Department of Health and 
Human Services (HHS), the National Institutes of Health (NIH), and the 
Office of Autism Research Coordination (OARC). While it
does not mention Education directly, we intend to work with the OARC 
to ensure the most accurate reporting possible. Our technical comments 
provide examples of the ways in which we have worked with the OARC on 
coding issues in the past, and how we hope to continue to work in the 
future. The Department has recently shared information on non-research 
autism activities with the OARC for the HHS Report to Congress on 
Activities Related to Autism Spectrum Disorders and Other 
Developmental Disabilities Under the Combating Autism Act of 2006 (FY 
2010-2012), and we will continue to provide relevant information about 
Department programs for similar efforts to monitor and report autism 
non-research activities. 

Recommendation 2: To promote better coordination among federal 
agencies that fund autism research and avoid the potential for 
unnecessary duplication before research projects are funded, we 
recommend that the Secretary of Health and Human Services, the 
Secretary of Defense, and the Secretary of Education, and the Director 
of NSF each determine methods for identifying and monitoring the 
autism research conducted by other agencies, including by taking full 
advantage of the monitoring data the IACC develops and makes available. 

Response: The Department would be pleased to participate in 
development of more refined methods for the identification and 
monitoring of multiagency autism research, as described in GAO's 
second recommendation. I am the Department's representative on the 
IACC and will continue to work with the OARC and the IACC to provide 
them with information for Congress and the public. 

The Department is concerned about, and does not concur with, GAO's 
conclusion that "the majority of federally-funded autism research was 
potentially duplicative..." The IACC objectives are broad and projects 
classified under them cannot be fairly judged "potentially 
duplicative" without more substantial exposition. Research projects 
with similar descriptors or titles may have different subject 
populations, sample sizes, methodologies, and outcome measures, and 
may explore different mechanisms or hypotheses. We note also that 
growth of the scientific knowledge base for any subject, and certainly 
for a subject as complex as autism, is dependent upon multiple studies 
investigating similar research questions. 

Thank you for the opportunity to comment on this draft report. We also 
are including technical comments with this response. 

Sincerely, 

Signed by: 

Michael K. Yudin: 
Acting Assistant Secretary for Special Education and Rehabilitative 
Services: 

[End of section] 

Appendix VII: Comments from the Department of Health and Human 
Services: 

Department of Health & Human Services: 
Office of The Secretary: 
Assistant Secretary for Legislation: 
Washington, DC 20201: 

October 24, 2013: 

Marcia Crosse: 
Director, Health Care: 
U.S. Government Accountability Office: 
441 G Street NW: 
Washington, DC 20548: 

Dear Ms. Crosse, 

Attached are comments on the U.S. Government Accountability Office's 
(GAO) report entitled, "Federal Autism Activities: Better Data and 
More Coordination Needed to Help Avoid the Potential for Unnecessary 
Duplication" (GAO-14-16). 

The Department appreciates the opportunity to review this report prior 
to publication. 

Sincerely, 

Signed by: 

Jim R. Esquea: 
Assistant Secretary for Legislation: 

Attachment: 

General Comments Of The Department Of Health And Human Services (HHS) 
On The Government Accountability Office's (GAO) Draft Report Entitled, 
"Federal Autism Activities: Better Data And More Coordination Needed 
To Help Avoid The Potential For Unnecessary Duplication" (GAO-14-16): 

The Department appreciates the opportunity to review and comment on 
this draft report. 

HHS recognizes and supports the essential function and critical 
importance of coordination among research investments funded by 
Federal agencies. However, we are concerned that this report may 
provide a risk of misinforming policy makers and the public. This 
report indicates that it did not assess the research projects for 
actual duplication, because such an effort would be outside of the 
scope of the report, according to the report. 

Although this report acknowledges that duplication is necessary in 
science for the sake of replicating or corroborating results, it does 
not appreciate the full extent of the necessity of replication and the 
extensive policies in place at HHS and other federal agencies to 
prevent redundant projects. HHS recognizes that scientific endeavors 
and the path of research discovery are not linear undertakings and 
often require verification and validation efforts. In addition, the 
advancement of scientific knowledge builds upon the cumulative efforts 
of what may seemingly be similar research undertakings on the surface, 
but in effect take what has been learned from previous research 
findings to another discovery frontier via the application of that 
knowledge. 

HHS is concerned about the report's implication that it is wasteful 
when more than one funding Agency addresses an objective or aim of the 
Strategic Plan for Autism Research. It must be recognized that the 
goals and objectives of the Strategic Plan represent complex 
scientific questions that require a multidisciplinary approach, with 
multiple scientific strategies. For example, to develop effective 
interventions for autism spectrum disorder (ASD) that will address the 
full range of symptoms and degrees of disability found in the ASD 
population, research studies on multiple intervention types, such as 
behavioral, pharmacological, educational, and occupational, may need 
to be undertaken simultaneously to facilitate rapid progress that 
benefits individuals with varying needs. Based on the urgent need to 
address rapidly the health and services issues that are the most 
pressing in the community, it is not only appropriate, it is critical 
that multiple agencies address the complex questions related to 
understanding the neurobiology of ASD and identifying efficacious 
intervention strategies for use across the lifespan. 

HHS is supportive of and committed to the call for greater 
coordination among federal research funding agencies and actively 
engages in efforts to minimize risk of research duplication in all 
activities. HHS agrees that there should be continued vigilance and 
coordination to avoid unnecessary duplication across research 
projects, and the HHS will continue its procedures for avoiding 
duplication. 

In the report, it is cited that "84 percent of the autism research 
projects funded by federal agencies were potentially duplicative." HHS 
believes that this statement is misleading or could be easily 
misconstrued. It is important to recognize the difference between 
appropriately addressing complex problems using multiple strategies 
and funding redundant or duplicative projects. We do not believe that 
research is necessarily duplicative if two agencies fund the same 
broad objective in the IACC Strategic Plan. GAO does not outline in 
the report the purpose and process for developing the strategic plan, 
yet for several areas that were determined to be gap areas in research 
and that were highlighted in the strategic plan, such as services to 
underserved populations and research regarding services to adults on 
the spectrum, it is a testament to agencies' responsiveness to needs 
expressed by the field that multiple research projects were funded to 
address these areas of need. 

GAO made the following statement while addressing the shortcomings of 
the Interagency Autism Coordinating Committee (IACC)'s data: "We found 
that, when looking across multiple years, some agencies funded more 
autism research projects than were suggested in the associated 
strategic plan objective...." This sentence implies that this is an 
indicator of wasteful spending, but that could be misleading. IACC 
stated as it developed its Strategic Plan that it intended the 
objectives to describe the minimum effort that would be required to 
address the complex issues set in each objective. The recommended 
number of projects or amount of funding in the objectives was 
described by IACC as a "floor, not a ceiling," recognizing that this 
minimum effort may only begin to address the gap areas described in 
each objective and that, in most cases, further efforts were likely to 
be required to fully address these areas of need. 

GAO Recommendation 1: To improve the usefulness of IACC data and 
enhance its efforts to coordinate HHS autism activities and monitor 
all federally funded autism activities, we recommend that the 
Secretary of Health and Human Services direct IACC and NIH, in support 
of IACC, to provide consistent guidance to federal agencies when 
collecting data for the portfolio analysis and web tool so that 
information can be more easily and accurately compared over multiple 
years. 

HHS Response: While HHS appreciates the value of consistency, we do 
not concur with the GAO characterization of the process or the quality 
of the Portfolio Analysis. Autism science has moved quickly in the 
past five years, with new fenders as well as new areas of funding. It 
is important to appreciate that in such a changing landscape of 
scientific funding, accuracy may need to trump consistency and that 
guidelines must evolve to be responsive to new opportunities. 

The Office of Autism Research Coordination (OARC), which conducts the 
IACC Portfolio Analysis and publishes the data in a publicly 
accessible report and online database on behalf of IACC, has used a 
consistent methodology and provided consistent guidance to funders 
participating in IACC ASD Research Portfolio Analysis during the past 
five years, but has balanced the need for consistency with the need to 
be responsive to feedback from IACC and from participating funders. 
This feedback has included suggestions for improving the clarity of 
the instructions in the guidance, addressing problems encountered in 
the previous year, and addressing issues that are unique to a specific 
participating agency or organization. OARC made updates to each year's 
guidance to address those types of issues and feedback, with the goal 
of improving the guidance to make the process easier and clearer for 
participating funders and to ensure the most current, accurate, and 
precise reporting of data. The updates did not, however, change the 
overall strategy or methodology for conducting the analysis. 

One example of such a clarification, mentioned in the GAO report, was 
the addition of text to the 2011 and 2012 IACC Portfolio Analysis 
guidance to clarify the types of projects that fit within two IACC 
Strategic Plan objectives related to evaluation of new and existing 
pre-service and in-service training programs. IACC requested that OARC 
make a clarification in the guidance to assist funders in determining 
which projects fit within these two objectives, to improve the 
accuracy and precision of reporting. The following clarification was 
added in response to IACC's request: "For these objectives, please 
include projects that are related to evaluating pre-service or in-
service training for service providers. This may include projects that 
are launching, piloting or testing new or innovative services 
practitioner training approaches in community based settings, 
evaluating the effectiveness of these programs in order to improve 
service practitioner training efforts, and/or contributing to the 
evidence base supporting various practitioner training methods. This 
may also include efforts to test new or innovative services approaches 
in various settings, make improvements in services methodologies, test 
effectiveness, develop best practices and improve targeting and 
dissemination of services. Many of these projects may be focused on 
practical, field-based and community-based approaches used by services 
agencies and organizations in their efforts to improve services. When 
including these projects, please be sure to note the evaluative 
component in the project description to ensure that the projects that 
are included are designed to test and improve programs rather than 
simply to administer them (service provision)." This change in the 
guidance, which provided additional detail about coding to those two 
particular objectives, fulfilled IACC's request to OARC for the 
guidance to be clarified with regard to those objectives, and enabled 
agencies to report more accurately and precisely the projects that 
were responsive to these two objectives. 

In 2011 and 2012, IACC Portfolio Analysis guidance also was updated in 
response to participant feedback requesting an option for the OARC to 
assist participating agencies by offering to conduct the initial 
coding of projects submitted by the agency, followed by verification 
by agency officials, to reduce the burden on contributing agencies. 
Feedback on the new option was overwhelmingly positive. Incorporating 
such suggestions from participating funders provides important 
opportunities for refining and optimizing the data collection process, 
which has been especially important because the Portfolio Analysis is 
a relatively new effort, having begun in 2008, and this scope and type 
of data have not been previously collected for most disease/disorder 
areas, so the process itself was relatively new. With any new process, 
refinement and adjustments are to be expected and are desirable for 
the purpose of improving processes. Changes in the guidance such as 
those described in these two examples did not change the overall 
methodology of the analysis, but they did provide an opportunity to 
refine and clarify the instructions, enabling more efficient, 
accurate, and precise data collection. In the future, OARC will 
continue to balance the need for maintaining consistency in the 
methodology of the Portfolio Analysis and accompanying guidance while 
also solving problems encountered and being responsive to IACC and 
participant feedback. 

With regard to accuracy, GAO cited 16 projects that were missed by 
OARC's data collection efforts. OARC examined this list of projects 
and determined that two of the projects cited by GAO were included 
within OARC's data sets, and the remaining 14 projects either pre-
dated the involvement of those particular funders in the Portfolio 
Analysis effort or were projects that were not submitted by the agency 
at the time of the Portfolio Analysis project but may have been 
identified as relevant to the autism portfolio at a later date. Since 
the IACC Portfolio Analysis effort is dependent on agency submissions 
and cross-verification between the agency and OARC, projects can only 
be reflected in the report if they are submitted by a participating
agency at the time of the data collection for any given year's report. 
Nevertheless, with the over 5,500 autism-research-related projects 
spanning both federal agencies and private organizations that have 
been captured by OARC's Portfolio Analysis effort in the past five 
years, OARC has provided IACC with access to a level of data 
describing the public-private research landscape that is not available 
for most other diseases, disorders, and health conditions either 
through government or private efforts, enabling them to use this 
information to assess the status of the field year by year and to make 
informed recommendations to guide future efforts. 

While a core group of funders have been involved in the IACC Portfolio 
Analysis effort since its inception in 2008, other funders have been 
invited or have volunteered to participate as the effort has 
continued. IACC in its discussions of the Portfolio Analysis effort 
has recognized that the addition of new funders over time may make 
comparisons of the overall funding from year to year challenging, but 
decided during its discussions that having the most current and 
comprehensive information regarding research-related efforts that are 
ongoing throughout the community is its highest priority. To keep the 
Portfolio Analysis effort up to date and as comprehensive as possible, 
IACC has expressed the intent to continue including new funders who 
may be supporting projects that are relevant to ASD research as the 
opportunity arises. It is expected that in the future, the pool of 
funders included in the analysis will largely stabilize as a large 
proportion of these relevant funders become participants in the 
effort, and this will enhance comparability of overall funding data 
over time. 

In addition to changes in funders over time, dramatic changes in the 
number and scope of the objectives in the early years of the IACC 
Strategic Plan—due to the committee's effort to continually update the 
Strategic Plan to reflect the current needs of the ASD community—have 
presented a challenge in terms of comparing data across years in the 
first three years of the effort. However, in the most recent three 
years, the stabilization of the Strategic Plan itself, due to the lack 
of new objectives or major revisions to the objectives made by the 
committee, has provided improved opportunities for meaningful multi-
year comparisons. As the Portfolio Analysis effort continues in future 
years and the group of participating funders also increasingly 
stabilizes, OARC anticipates additional opportunities to make 
meaningful comparisons of data across multiple years. The first of 
such comparative data, reflecting five years of funding, will be used 
by IACC to assist them in their 2013 Strategic Plan Update process in 
the fall of 2013 and will be published in the upcoming edition of the 
IACC Portfolio Analysis Report and Web Tool that are in preparation. 
As in past years, all documents used by the committee, the reports, 
and the database updates will be fully accessible to the public via 
the IACC website at [hyperlink, http://iace.hhs.gov/index.shtml]. 

GAO Recommendation 2: To improve the usefulness of IACC data and 
enhance its efforts to coordinate HHS autism activities and monitor 
all federally funded autism activities, we recommend that the 
Secretary of Health and Human Services direct IACC and NIH, in support 
of IACC, to create a document or database that provides information on 
non-research autism-related activities funded by the federal 
government and make this publicly available. 

HHS Response: HHS agrees that it is important for Congress and the 
public to have access to information about non-research autism-related 
activities. HHS does not concur with the recommendation that IACC and 
NIH be directed to create a new document or database to catalogue 
these efforts, as such a project may duplicate ongoing efforts. IACC 
and several federal agencies already provide publicly accessible 
information on non-research autism-related activities in several ways 
described below. 

For example, in 2010, OARC, on behalf of the Office of the Secretary 
of HHS, coordinated the Report to Congress on Activities Related to 
Autism Spectrum Disorders and Other Developmental Disabilities Under 
the Combating Autism Act of 2006 (FY 2006-FY 2009) to provide 
information requested by Congress in Section 399DD of the Combating 
Autism Act of 2006. This report was provided to Congress by the 
Secretary of HHS to inform Congress of the broad scope of both 
research and non-research activities that were being supported across 
NHS and the Department of Education. The 76-page report describes 
research and services programs and projects across 9 agencies, 
including education, transition planning, employment, home- and 
community-based services, legal services, rehabilitative services, 
inclusion and a variety of other services, and other non-research-
related programs, in addition to descriptions of government research 
programs. The report is available to the public on the IACC website at 
[hyperlink, http://iacciths.govireports/reports-to-conPress/FY2006-
2009/index.shtml]. The next Report to Congress on federal autism 
activities, which will encompass descriptions of a broad array of 
research, as well as services and other non-research programs and 
projects that were supported by 13 federal agencies and Departments 
from 2010-2012 is in preparation and is expected to be sent to 
Congress by the Secretary of HHS and then released to the public in 
the fall of 2013. 

Given that OARC and several federal agencies are already making 
significant efforts to provide Congress and the public with detailed 
information about a wide array of federal non-research autism-related 
activities in publicly accessible formats, it will be important for 
IACC and OARC to continue to post links to these reports and resources 
on the [ACC web site. OARC will also continue to ensure that IACC sets 
aside time during its meetings to discuss these kinds of documents, 
projects, and resources to facilitate coordination and public 
awareness of these important federal activities. 

GAO Recommendation 3: To improve the usefulness of IACC data and 
enhance its efforts to coordinate HHS autism activities and monitor 
all federally funded autism activities, we recommend that the 
Secretary of Health and Human Services direct IACC and NIH, in support 
of IACC, through its monitoring of federal autism activities — 
including OARC's annual collection of data for the portfolio analysis 
and IACC's annual process to update the strategic plan — identify 
projects that may result in unnecessary duplication and thus may be 
candidates for consolidation or elimination, and identify potential 
coordination opportunities among agencies. 

HHS Response: HHS does not concur with the GAO recommendation if the 
intent is for the Secretary of HHS to direct the IACC to conduct 
analysis with the specific goal of identifying duplication of effort, 
as such an effort would not be likely to provide the type of 
information on "actual duplication" needed by agency officials in 
determining overlap prior to making funding decisions. However, HHS 
will continue to support IACC in the many different types of 
activities it conducts on an annual basis to coordinate HHS efforts 
and identify opportunities for cross-agency coordination. HHS does not 
concur that there is too much federal activity related to autism and 
that the IACC role should include identification of autism-related 
projects for elimination. 

IACC conducts many different types of activities as a part of its 
process to monitor federal activities and coordinate federal agency 
efforts on ASD. These include hosting presentations from and 
discussions with agency officials regarding their programmatic 
activities during IACC meetings, examining and discussing published 
studies and government reports related to government-funded efforts, 
gathering information on federal activities during the annual 
Strategic Plan updating process, and conducting quantitative analyses 
of publications and grant funding. All of these activities help 
agencies gain various levels of information about other agencies' 
projects and programs and help agencies identify opportunities for 
enhanced coordination of efforts. 

The IACC Portfolio Analysis and Strategic Plan update processes are 
designed to do the following: help 1ACC gather information that can be 
used to support their efforts to provide advice to the Secretary of 
MIS, develop an annual Summary of Advances in ASD research, develop 
and annually update a Strategic Plan for ASD research using the latest 
information about advances in the field and the status of research 
funding across the federal government and private funders, monitor 
federal activities, and coordinate HHS activities. While the Portfolio 
Analysis and Strategic Plan processes cover a broad range of 
information about research activities and funding, they are not 
designed to provide the types of information that would be needed to 
make individual funding decisions about federal grants. These 
processes examine the portfolio of Strategic Plan-related activities 
and funding at a high level, analyzing aggregate data from multiple 
agencies and organizations, and they examine the portfolio after 
funding decisions have already been made because the analysis relies 
on publicly available federal data. 

To determine whether or not particular grants may overlap with other 
grants and thus whether certain grants would be candidates for budget 
reductions or elimination from consideration for funding would require 
the determination of "actual duplication" prior to award and not 
"potential duplication" post-award, which is what is provided by GAO 
in this report. For example, if IACC were to determine that having 
more than one grant assigned to each objective in the IACC Strategic 
Plan constituted "potential duplication" and that, therefore, almost 
all grants awarded are "potentially duplicative," this would not give 
program officials enough specificity to help them identify actual 
instances of duplication that they would not have otherwise identified 
through the extensive processes they already use to determine 
duplication/grant overlap during the grant award process. Even if IACC 
further refined its analysis to identify several grants on the same 
general topic within an objective as "potential duplication," this 
type of information still would lack adequate specificity to be useful 
to agency officials who are involved in the grant award process. 

IACC's Strategic Plan questions and objectives encompass broad and 
complex areas of research for which multiple agencies and projects, 
often using different approaches, would be expected and needed in 
order to achieve the desired progress and advances in the ASD field. 
Thus, evidence of multiple projects addressing a question within a 
field of research would not be deemed to be duplicative. While any 
time that more than one project is funded there is a potential for 
duplication, agency funding decisions would not be changed based on 
potential duplication. They would only be changed in cases of actual 
duplication, which may be defined as the same researchers requesting 
funding from more than one source to conduct the same aspects of the 
same project. Co-funding of the same project by two agencies, the same 
researcher conducting follow-on projects to a previously funded 
project, or two researchers addressing a similar question with 
different approaches would be examples of projects that could look 
related to a non-expert but are not considered to be overlap or actual 
duplication. 

Determination of "actual duplication" or grant overlap requires 
detailed subject matter expertise that would allow an individual to 
distinguish related activities from duplicative activities and access 
to pre-award data during the period prior to when an award is made. 
Agency program officials have the responsibility to check each grant 
for potential overlap with other funding sources prior to award, and 
these officials have both the expertise and access to grant 
application data and federal databases, as well as the knowledge of 
federal rules and policies, that would be required to determine if 
actual overlap exists. In addition to these issues (lack of adequate 
subject matter expertise and lack of access to pre-award grant data) 
that would prevent IACC from being able to add an effective layer of 
information to the federal grant award process, the committee would be 
limited by the amount of time the members have in their meetings 
during the year to carry out such an effort. 

IACC typically meets four to six times per year as a full committee 
(in addition to subcommittee and working group meetings) and is 
responsible for providing advice to the HI-IS Secretary, completing an 
annual update of the Strategic Plan, developing an annual summary of 
research advances, coordinating HHS activities; and monitoring federal 
activities. Monitoring federal activities includes not only the 
Portfolio Analysis effort but also interactions with external invited 
experts and discussion of agency activities during IACC meetings. Even 
if all future IACC meeting time were to be used solely to examine the 
ASD research portfolio, it would be unlikely that the committee could 
complete a more detailed analysis than that resulting from GAO's 
intensive one and a half year analysis, which identified only 
potential duplication. Such information that is limited to potential 
duplication would not provide an added value for program officials in 
their already extensive process to determine actual grant overlap 
prior to funding. 

Program officials already have access to the broad types of 
information, such as which projects are categorized under each 
Strategic Plan objective, through the IACC Portfolio Analysis Report 
and the IACC/OARC Portfolio Analysis Web tool, which they can use as a 
source of information when making determinations. The IACC/OARC 
Portfolio Analysis Web Tool is publicly available online at 
[hyperlink, https://iacc.hhs.Rov/apps/portfolio-analysis-web-
tool/projects]. 

GAO Recommendation 4: To promote better coordination among federal 
agencies that fund autism research and avoid the potential for 
unnecessary duplication before research projects are funded, we 
recommend that the Secretary of Health and Human Services, the 
Secretary of Defense, and the Secretary of Education, and the Director 
of NSF each determine methods for identifying and monitoring the 
autism research conducted by other agencies, including by taking full 
advantage of monitoring data the IACC develops and makes available.
HHS Response: HHS does not concur with the finding that "Federal 
Agencies' Coordination and Monitoring of Autism Activities was 
Limited." HHS agrees with GAO's conclusion that it is critically 
important to avoid unnecessary duplication in research related to 
Autism Spectrum Disorders, We have not encountered any actual examples 
of unnecessary duplication in interactions between agencies, and none 
were cited in the GAO's report. 

HHS has robust procedures in place for avoiding duplication before 
grant and contract awards are made and to keep the funding decision-
making process fair and equitable. In addition, the internal NIH 
Autism Coordinating Committee (NIH ACC) and IACC provide-opportunities 
for monitoring and collaboration within NIH and across federal 
Agencies. These policies and coordinating bodies have served HHS well 
in terms of identifying and preventing duplication prior to making 
funding decisions. We will continue to monitor the internal NIH ACC 
procedures, as well as participation on the IACC, to make full use of 
these opportunities. 

IACC is able to use its Portfolio Analysis to broadly track progress 
of Federal agencies in achieving Strategic Plan objectives. IACC is 
not equipped with the scientific expertise or access to pre-award data 
that would be necessary to make an accurate determination regarding 
grant overlap issues. As the GAO report indicates, NIH funded 81 
percent of the autism-related research from fiscal years 2008 through 
2012. Therefore, coordination among the NIH Institutes and Centers 
(ICs) that fund autism research represents a large component of HHS' 
ongoing efforts to avoid unnecessary duplication in research. To 
achieve this coordination, NIH convenes meetings of its internal ACC 
at least monthly. Program, communications, and policy staff from the 
National Institute of Mental Health (NIMH), the Eunice Kennedy Shriver 
National Institute of Child Health and Human Development (NICHD), the 
National Institute of Neurological Disorders and Stroke (NINDS), the 
National Institute on Deafness and Other Communication Disorders 
(NIDCD), and the National Institute of Environmental Health Sciences 
(NIEHS) are members of the ACC. ACC members collaboratively plan and 
co-fund major autism-related research initiatives and scientific 
workshops, and they review the IACC Portfolio Analysis for gaps in 
research when planning such activities. Moreover, they share 
information related to autism research activities at their respective 
Institutes, including information about activities in which the NIH 
ICs participate or coordinate with other federal agencies. They also 
share information they learn about nongovemment-funded autism research 
through participation in scientific meetings and other activities 
sponsored by nongovemment organizations. Therefore, collaborations and 
information exchanges through the NIH ACC provide important 
opportunities for averting unnecessary duplication before it happens, 
both within and beyond the NIH. 

IACC affords another opportunity for cross-Agency information-sharing. 
It is a forum for announcing major funding initiatives to all IACC 
members and to others who attend or listen to IACC meetings, including 
staff from federal agencies and non-government organizations and 
members of the patient, provider, and research communities, as well as 
the general public. For example, in the past two years, the following 
major research initiatives and scientific workshops have been 
presented to the IACC: 

* CDC-sponsored Study to Explore Early Development; 
* CDC-sponsored Read the Signs Act Early campaign; 
* NIH-supported Autism Centers of Excellence initiatives; 
* ARRA-supported JobTIPS Web site; 
* HRSA-sponsored Combating Autism Act initiatives; 
* CDC-sponsored Autism Prevalence Workshop; 
* Workshop on Epilepsy and Autism Co-sponsored by private funders and 
the NIH; 
* CDC-NIH sponsored Minnesota Somali Project; 
* NIMH-sponsored Study of Health Outcomes in Children with Autism and 
their Families; 
* NICHD-sponsored National Children's Study; 
* CDC/HRSA-sponsored study on Changes in Prevalence of Parent-reported 
Autism Spectrum Disorder in School-aged U.S. Children; 
* NIH-sponsored workshop and funding initiative on Minimally Verbal 
ASD. 

In addition to the NIH ACC and IACC, NIH as a whole has extensive 
policies in place concerning monitoring and managing potential overlap 
in funding. Avoidance of duplication before funding is the goal, but 
monitoring and addressing duplication also occurs during review of 
yearly progress reports from the funded investigators. Avoiding 
overlap is a formal and critical responsibility of NIH staff, 
including grants management, program, and review staff. Further, NM's 
comprehensive internal database, Information for Management, Planning, 
Analysis, and Coordination (IMPAC II), provides information systems to 
support the full life cycle of grants administration, including 
information about grant applications prior to award. IMPAC II is the 
database used extensively by NIH grants and program staff to obtain 
and manage detailed information used for funding decisions, among 
other things. IMPAC II currently includes grants and applications for 
NIH, the Food and Drug Administration, the Centers for Disease Control 
and Prevention, the Agency for Healthcare Research and Quality, the 
Substance Abuse and Mental Health Services Administration, and the 
Department of Veterans Affairs. The U.S. Department of Agriculture 
will be added to the database in the next year, and discussion is 
ongoing with the Department of Defense and the National Science 
Foundation to investigate the addition of their applications and 
grants to IMPAC II. 

NIH addresses any type of overlap, whether it is scientific, 
budgetary, or commitment of effort, prior to the issuance of a Notice 
of Grant Award and while reviewing annual progress reports. Submission 
of identical applications to one or more components of the Public 
Health Service (PHS) is not allowed, and NIH will not accept similar 
grant applications with essentially the same research. If there is 
partial duplication, the pending application, other applications, or 
the active award will be modified prior to NIH's funding the pending 
application. To make these determinations, staff consult, as 
necessary, with the Principal Investigator, other funding components 
within NIH, other government agencies, or nongovemment organizations 
to resolve questions of overlap. 

The application instructions require the applicant (1) to indicate 
whether his/her application has been sent to other agencies outside 
the PHS and (2) to include on the cover of the application to which 
agencies the application has been submitted. This information is part 
of every electronic application. It is also important to note that the 
application instructions, as well as the NIH Grants Policy Statement 
(10/2011), which is a term and condition of all NIH grant awards, 
contain the NIH's policy on similar, essentially identical, or 
identical applications. To prevent duplicate research from a single 
investigator or institution, it is the responsibility of program and 
grants management staff to review routinely Other Support 
documentation that is provided in the grant application and updated 
prior to award (and which includes all financial resources whether 
federal, nonfederal, commercial, or organizational, available in 
direct support of_the key personnel's research endeavors) to determine 
if there is budgetary, scientific, or time commitment overlap. Review 
of IMPAC II grants information and Other Support documentation is used 
to identify potentially overlapping or duplicative applications from 
different research teams. 

Additionally, applications to NIH are grouped by scientific discipline 
for review by individual Scientific Review Groups. The reviewers can 
thus easily identify multiple grant applications for essentially the 
same project. In these cases, application processing may be delayed or 
the application(s) may not be reviewed. In addition, peer reviewers 
are asked to rate the significance and innovation of grant 
applications, including whether it will substantially advance the 
field and whether the research projects utilize innovative and novel 
approaches, or address an unmet need. 

[End of section] 

Appendix VIII: Comments from the National Science Foundation: 

National Science Foundation: 
4201 Wilson Boulevard: 
Arlington, VA 22230: 
[hyperlink, http://WWW.NSF.GOV] 

October 23, 2013: 

Dr. Marcia Crosse: 
Director, Health Care: 
U.S. Government Accountability Office: 
441 G Street, NW, Room 5A-14: 
Washington, DC 20548: 

Dear Dr. Crosse: 

Thank you far providing the National Science Foundation (NSF) an 
opportunity to comment on the U.S. Government Accountability Office's 
(GAO) draft report entitled Federal Autism Activities: Better Data and 
More Coordination Needed to Help Avoid the Potential for Unnecessary 
Duplication (GAO-14-16). 

NSF supports fundamental research across all areas of science and 
engineering from astronomy to geology to zoology. However, NSF does 
not generally support biomedical research. With an annual budget of 
nearly $7 billion (fiscal year 2013), NSF funds approximately 21 
percent of all federally supported fundamental research conducted by 
America's colleges and universities. NSF support results in scientific 
and engineering advancements that are central to our nation's future 
well-being. NSF also supports the preparation of tomorrow's science, 
technology, engineering and mathematics (STEM) workforce. 

As the draft report accurately indicates, NSF is not a member of the 
Interagency Autism Coordinating Committee (IACC). NSF does not have 
autism research initiatives or programs. As a result, NSF makes an 
extremely limited number of autism-related annual awards. Appendix Ill 
of the draft report identifies 28 NSF-supported, autism-focused 
research projects from 20082012; during that same period, NSF made on 
the order of 55,000 awards. Proposals that align with NSF programmatic 
areas and that might have relevance to autism are reviewed for 
scientific merit using two criteria: intellectual merit and broader 
impacts. Reviewers and NSF program officers, who are scientific 
experts, determine whether the proposed research activity is 
meritorious. Such research may be funded for reasons not identified in 
the IACC strategic plan. 

Contrary to the draft report's statement, NSF does take steps to 
prevent duplication. NSF requires that proposals submitted to NSF 
provide complete information about current and pending support, 
including funding from other federal agencies, regarding the proposed 
research activity. As necessary, NSF consults with other agencies 
regarding potentially duplicative research proposals to ensure that 
NSF does not fund the same research activity supported by another 
agency. It should be noted that the cataloging by the IACC of NSF 
research awards does not suggest that grants in a category, such as 
"Biology," are necessarily duplicative of other agency awards about 
the biology of autism. Additionally, NSF provides publicly available 
information about our research and education awards on NSF's website. 
NSF also provides this information to the IACC for their portfolio 
reporting. 

NSF welcomes the opportunity to collaborate and exchange information 
with other federal agencies about science related to autism. NSF will 
continue to identify NSF-supported research related to autism and 
provide this information to the IACC. We look forward to receiving 
your final report. 

Sincerely, 

Signed by: 

Kathryn Sullivan: 
Senior Advisor: 
Office of the Director/Office of International and Integrative 
Activities: 

[End of section] 

Appendix IX: GAO Contact and Staff Acknowledgments: 

GAO Contact: 

Marcia Crosse, (202) 512-7114, crossem@gao.gov: 

Staff Acknowledgments: 

In addition to the contact named above, Geri Redican-Bigott, Assistant 
Director; Deirdre Brown; Sandra George; Kristin Helfer Koester; 
Giselle Hicks; Drew Long; and Sarah Resavy made key contributions to 
this report. 

[End of section] 

Footnotes: 

[1] CDC has recently reported 2 estimates of autism prevalence: 1 in 
88 and 1 in 50 children in the United States have been identified as 
having autism. According to CDC, there are several differences between 
the 2 studies used to determine the estimates that can contribute to 
the differing results, such as the population covered, method of data 
collection, and time periods covered. CDC reported its estimate of 1 
in 88 in March 2012, which was based on reviews of health and 
education records of children 8 years of age residing in 14 select 
population-based sites in the United States during calendar year 2008. 
The estimate of 1 in 50 was reported in March 2013 and was based on 
parent reports of a past diagnosis in a representative national sample 
of children 6 to 17 years of age in calendar years 2011 and 2012. CDC 
views the 2 data collection methods and estimates to be complementary. 
According to CDC, each provides unique supplemental information on the 
population of children with autism. Prior to these recent estimates, 
in 2009, CDC reported an estimated prevalence of 1 in 110 children in 
the United States, which was based on data from calendar year 2006. 

[2] In this report, we use the term "autism" to refer to autism 
spectrum disorder as defined in the fourth edition of the Diagnostic 
and Statistical Manual of Mental Disorders, which was effective during 
the time period covered by our review. American Psychiatric 
Association, Diagnostic and Statistical Manual of Mental Disorders, 
4th Edition, Text Revision (DSM-IV-TR) (Arlington, VA: American 
Psychiatric Association, 2000). 

[3] These agencies are the Department of Defense; Department of 
Education; Environmental Protection Agency; National Science 
Foundation; and eight agencies within HHS--Administration for Children 
and Families, Administration for Community Living, Agency for 
Healthcare Research and Quality, CDC, Centers for Medicare & Medicaid 
Services, Health Resources and Services Administration, National 
Institutes of Health, and Substance Abuse and Mental Health Services 
Administration. 

[4] "Autism-related activities" include agency activities that are 
specific to autism as well as agency activities that are not autism-
specific, but through which a project that was autism-specific or had 
an autism-specific component was funded. 

[5] Pub. L. No. 109-416, 120 Stat. 2821 (Dec. 19, 2006). These 
activities were reauthorized and funding was authorized to be 
appropriated through fiscal year 2014 under the Combating Autism 
Reauthorization Act of 2011. Pub. L. No. 112-32, 125 Stat. 361 (Sept. 
30, 2011). We previously reported on HHS agencies' response to the 
CAA. See GAO, Combating Autism Act: HHS Agencies Responded with New 
and Continuing Activities, Including Oversight, [hyperlink, 
http://www.gao.gov/products/GAO-13-232] (Washington, D.C. Feb. 27, 
2013). 

[6] Pub. L. No. 106-310, § 104, 114 Stat. 1101, 1109 (Oct. 17, 2000). 

[7] IACC membership as of November 2013. 

[8] The CAA also requires the IACC to develop and annually update a 
summary of advances in autism research; and to make recommendations to 
the Secretary of Health and Human Services regarding any appropriate 
changes to federal autism activities, including recommendations with 
respect to the strategic plan on autism research and recommendations 
regarding public participation in decisions relating to autism. 

[9] A cooperative agreement is an alternative assistance instrument 
used instead of a grant whenever substantial federal involvement with 
the recipient during performance is anticipated. 

[10] We initially collected data directly from the individual federal 
agencies regarding the autism research and autism-related activities 
that were awarded funds from fiscal years 2008 to 2011. While our work 
was in progress, in January 2013, we learned that OARC, on behalf of 
the IACC, had started collecting data on research projects funded by 
federal agencies in fiscal years 2011 and 2012. We opted to include 
the fiscal year 2012 research projects that agencies reported to OARC. 
We relied on the agency data we collected on the non-research 
activities awarded between fiscal years 2008 and 2011. Also, DOD's 
fiscal year 2012 appropriation for its medical research programs, 
including autism, was available for obligation through the end of 
fiscal year 2013--September 30, 2013. At the time of our review, DOD 
had not submitted data on its fiscal year 2012 research projects in 
response to OARC's request. As a result, our report does not include 
data on DOD's fiscal year 2012 autism research. 

[11] See for example, GAO, 2013 Annual Report: Actions Needed to 
Reduce Fragmentation, Overlap, and Duplication and Achieve Other 
Financial Benefits, [hyperlink, 
http://www.gao.gov/products/GAO-13-279SP] (Washington, D.C.: Apr. 9, 
2013) and GAO, 2012 Annual Report: Opportunities to Reduce 
Duplication, Overlap, and Fragmentation, Achieve Savings, and Enhance 
Revenue, [hyperlink, http://www.gao.gov/products/GAO-12-342SP] 
(Washington, D.C.: Feb. 28, 2012). 

[12] We interviewed eight federal members of the IACC. We did not 
interview officials from two agencies that are members of the IACC--
the Administration for Children and Families (ACF) and the Food and 
Drug Administration. ACF awarded funds for one autism-related research 
project in fiscal year 2012. The Food and Drug Administration did not 
fund any autism research or autism-related activities during the time 
frame of our review. We also did not interview Substance Abuse and 
Mental Health Services Administration (SAMHSA) officials. SAMHSA is 
not a member of the IACC, but awarded funds for one autism-related 
research project in fiscal year 2011. We selected six nonfederal 
members to interview; however, in July 2013, one of the nonfederal 
members we interviewed stepped down from the IACC. 

[13] See, for example, GAO, Managing for Results: Key Considerations 
for Implementing Interagency Collaborative Mechanisms, [hyperlink, 
http://www.gao.gov/products/GAO-12-1022] (Washington, D.C.: Sept. 27, 
2012); GAO, Results-Oriented Government: Practices That Can Help 
Enhance and Sustain Collaboration among Federal Agencies, [hyperlink, 
http://www.gao.gov/products/GAO-06-15] (Washington, D.C.: Oct. 21, 
2005); and GAO, Standards for Internal Control in the Federal 
Government, [hyperlink, 
http://www.gao.gov/products/GAO/AIMD-00-21.3.1] (Washington, D.C.: 
November 1999). 

[14] A developmental disability is a chronic condition caused by 
mental impairment, physical impairment, or both that begins any time 
during prenatal development up to age 22 and usually persists 
throughout a person's life. Individuals with developmental 
disabilities have substantial functional limitations in at least 3 
major life activities such as language, mobility, learning, self-help, 
and independent living. Developmental disabilities may include 
cerebral palsy, hearing loss, intellectual disability, and impaired 
vision. 

[15] See HHS, OARC, NIH, Report to Congress on Activities Related to 
Autism Spectrum Disorder and Other Developmental Disabilities Under 
the Combating Autism Act of 2006 (FY 2006 - FY 2009) (Rockville, Md.: 
December 2010, revised April 2011). According to OARC officials, OARC 
will be preparing another report to Congress on autism activities as 
required by the reauthorization of the CAA. This report is expected to 
be submitted to Congress by the Secretary of Health and Human Services 
and then released to the public in the fall of 2013. 

[16] AHRQ and DOD were not members of the IACC when the CAA was 
enacted in 2006, but have joined since the act's reauthorization in 
2011. ACL was created in 2012. Prior to this, the component of ACL 
that funded an autism activity was part of ACF and a previous IACC 
member. SAMHSA was also a previous IACC member. 

[17] ACL did not fund autism research from fiscal year 2008 through 
fiscal year 2012; ACL funded one non-research autism-related activity 
during this time period. 

[18] Principal investigators are typically individuals designated by 
the applicant organization, such as a university, to have the 
appropriate level of authority and responsibility to direct the 
project or program to be supported by the award. A funding opportunity 
announcement is a publicly available document in which a federal 
agency makes known its intentions to award discretionary grants or 
cooperative agreements, usually as a result of competition for funds. 
Funding opportunity announcements may be known as program 
announcements, requests for applications, notices of funding 
availability, solicitations, or other names depending on the agency 
and type of program. A request for proposal is a type of mechanism 
used to solicit proposals for a contract. 

[19] NIH and other HHS agencies have developed omnibus parent 
announcements for use by investigators who wish to submit investigator-
initiated research. 

[20] Another such required report is a summary of advances in autism 
research, which annually lists and summarizes the findings of autism 
research publications that the IACC deems to have significantly 
advanced the field. 

[21] Six research areas have separate short-and long-term objectives. 
For one research area--infrastructure and surveillance--the IACC 
considers all objectives within that area to be both short-and long-
term objectives. 

[22] The 2009 strategic plan contained 6 questions and 40 objectives. 
The question--"What other infrastructure and surveillance needs must 
be met?"--as well as additional objectives were added to the 2010 
strategic plan. During the IACC's most recent update of the strategic 
plan--the 2012 update--the IACC did not review or change the number of 
objectives, but instead summarized the new advances and opportunities 
in the field under each of the 7 research areas. Therefore, the most 
recent plan that contains the research areas and objectives is the 
2011 strategic plan. 

[23] The first portfolio analysis--the 2008 portfolio analysis--which 
contains information on research funded in 2008, was published in 
April 2010. The 2009 portfolio analysis was published in June 2011. 
The most recent portfolio analysis--the 2010 portfolio analysis--was 
published in July 2012. 

[24] We consider reports and other information that are prepared by 
OARC, on behalf of the IACC, to be IACC information. 

[25] The web tool, accessed August 27, 2013, is available at 
[hyperlink, https://iacc.hhs.gov/apps/portfolio-analysis-web-
tool/projects]. 

[26] For our analysis, we determined the average number of IACC full 
committee meetings from calendar years 2008 through 2012. In addition 
to these meetings, the IACC subcommittees have met, and the IACC has 
held town hall gatherings, scientific workshops, and planning 
workgroup meetings. There are two IACC subcommittees. The subcommittee 
for basic and translational research supports IACC activities related 
to biomedical and behavioral research, research collaborations and 
resources, and other related issues. The subcommittee for services 
research and policy supports IACC activities related to service 
research and service policy, including service provision, service 
research, access, housing, transition, social inclusion, health 
disparities, healthcare costs, the Patient Protection and Affordable 
Care Act, and safety issues. 

[27] See, for example, [hyperlink, 
http://www.gao.gov/products/GAO-13-279SP] and [hyperlink, 
http://www.gao.gov/products/GAO-12-342SP]. 

[28] Grants.gov serves as the central grant identification and 
application portal for more than 1,000 federal grant programs that 
fund approximately $500 billion in grants from 26 grant-making 
agencies for activities such as training, research, planning, 
construction; and the provision of services in areas such as health 
care, education, transportation, and homeland security. See 
[hyperlink, http://www.grants.gov], accessed August 26, 2013. 
ClinicalTrials.gov is a resource for information about clinical 
research studies, also referred to as clinical trials. It includes 
information on federally funded and non-federally funded studies. See 
[hyperlink, http://www.clinicaltrials.gov], accessed August 26, 2013. 

[29] See, for example, [hyperlink, 
http://www.gao.gov/products/GAO-12-1022] and GAO, Managing for 
Results: Critical Issues for Improving Federal Agencies' Strategic 
Plans, [hyperlink, http://www.gao.gov/products/GAO/GGD-97-180] 
(Washington, D.C.: Sept. 16, 1997). 

[30] [hyperlink, http://www.gao.gov/products/GAO-06-15] and 
[hyperlink, http://www.gao.gov/products/GAO/AIMD-00-21.3.1]. 

[31] We found that 84 percent of projects were potentially duplicative 
by identifying the number of projects that were categorized to the 
same strategic plan objective and funded by different agencies. For 
those projects that were not categorized to a specific objective, but 
were categorized to one of the 7 research areas, we identified the 
number of projects that were categorized to the same research area and 
funded by different agencies. We summed the projects identified and 
compared the results to the total number of research projects funded 
during the time period of our review. Our findings suggest the 
potential for, but not actual, duplication. We could not assess 31 
projects for duplication. NIH categorized 6 of its research projects 
as not relating to any of the research areas. Additionally, 16 
research projects were not included in IACC data. Furthermore, from 
fiscal years 2008 through 2011, CDC awarded funds for 9 research 
projects on autism and other developmental disabilities as part of its 
non-research autism-related activity, Learn the Signs. Act Early. CDC 
categorized the entire activity to the services research area; 
however, we did not categorize these 9 research projects to the same 
objective because it was unclear if the individual research projects 
under Learn the Signs. Act Early. would also be categorized to the 
services research area. 

[32] According to OARC officials, the strategic plan objectives 
represent gap areas that need additional attention or emphasis, and 
are not meant to cover all areas of autism research; therefore, 
research projects that are categorized to a research area, but not a 
specific objective, focus on research outside of the specific gap 
areas represented in the strategic plan. 

[33] During the course of our review, we learned that HRSA, AHRQ, and 
Education funded reviews of evidence regarding the effectiveness of 
autism interventions for children and adolescents. Using the framework 
established in our previous work on duplication, we obtained 
additional data from these agencies that allowed us to determine if 
there was duplication by comparing the projects' purposes, strategies, 
and target populations. 

[34] A systematic review is a critical assessment and evaluation of 
all research studies that address a particular clinical issue. 

[35] Education's project published a report of its findings in 2010, 
and the AHRQ project published its report in 2011. 

[36] Although CDC's Learn the Signs. Act Early. campaign is generally 
a non-research autism-related activity, one institution received 
funding from CDC through this campaign to conduct research on autism 
and other developmental disabilities. We included the funds awarded to 
this institution for research as research in our analysis. 

[37] The Autism Research Program Integration Panel is comprised of 
experts and leaders in the field, including doctors, scientists, and 
consumers. It recommends the office's autism research priorities and 
recommends projects to be funded annually. 

[38] We asked agency officials about the extent to which they used the 
strategic plan and portfolio analysis. The agencies that do not 
regularly use these documents are ACL, AHRQ, Education, EPA, and NSF. 
While AHRQ does not regularly use these documents, AHRQ officials 
stated that they consulted the IACC when developing their systematic 
reviews related to autism. Additionally, CMS officials stated that 
while they do not use the portfolio analysis, the autism research 
projects they funded resulted from strategic plan objectives, among 
other things, such as the general rise of autism and CMS's own 
initiative and interest in providing information to the professionals 
who work with CMS. In addition, HRSA officials stated they used the 
strategic plan when first creating their autism activities and on an 
ongoing basis. Officials stated that they included language in their 
autism funding opportunity announcements about their interest in 
intervention research, underserved populations, and other broad areas 
noted as gaps in the strategic plan; however, HRSA officials made no 
mention of using the portfolio analysis. 

[39] In its comments on a draft of this report, Education stated that 
after holding a meeting with OARC officials in August 2013, it 
determined that its research related to interventions could be 
categorized to the strategic plan; subsequently, it has categorized 
those projects accordingly. 

[40] The portfolio analysis and web tool indicate whether an objective 
has been fulfilled based on the funding of projects related to that 
objective in a given year and annualized funding goals for each 
objective set by the IACC. 

[41] The guidance states that project information should only be 
provided if a project relates to evaluating training for service 
providers. Projects that solely involved the administration of 
services were not to be provided. 

[42] The DOD Air Force study, Comprehensive Clinical Phenotyping and 
Genetic Mapping for the Discovery of Autism Susceptibility Genes, was 
conducted with the Research Institute at Nationwide Children's 
Hospital in Ohio and awarded funds in 2008 and 2009. 

[43] The Education study, Combining Technologies to Maximize Outcomes: 
Telemedicine and Online Training Program for Parents of Children with 
Autism, was awarded funds in 2008. 

[44] The most recent portfolio analysis is described as including 
information on autism research funded by major federal agencies. The 
portfolio analysis also includes information on autism research funded 
by certain nonfederal organizations. 

[45] In prior work, we established certain key features that benefit 
collaborative mechanisms (see [hyperlink, 
http://www.gao.gov/products/GAO-12-1022]). 

[46] [hyperlink, http://www.gao.gov/products/GAO/AIMD-00-21.3.1]. 

[47] For example, while 1 objective recommended launching 3 projects 
related to underlying biological pathways of genetic conditions 
related to autism, 72 projects were funded from fiscal year 2008 
through 2012. 

[48] According to OARC officials, the web tool will also be released 
in the first quarter of calendar year 2014. At the time of our review, 
OARC officials were not certain whether the portfolio analysis would 
include 2011 and 2012 data combined or separated; however, they stated 
that the web tool would report the data separately, similar to the 
presentation of prior years' data. 

[49] [hyperlink, http://www.gao.gov/products/GAO-06-15]. 

[50] We found some other instances where an agency funded another 
agency to conduct research or other activities through an interagency 
agreement or memorandum of understanding; however, the projects were 
not co-managed. 

[51] See for example, [hyperlink, 
http://www.gao.gov/products/GAO-13-279SP] and [hyperlink, 
http://www.gao.gov/products/GAO-12-342SP]. 

[52] See federal internal control standard for information and 
communications. [hyperlink, 
http://www.gao.gov/products/GAO/AIMD-00-21.3.1]. 

[53] In addition, NIH officials stated that, before awarding funding, 
NIH program and grants management staff are to ensure that there is no 
budgetary, scientific, or commitment overlap by reviewing 
documentation of "other support" identified by the applicant (which 
includes all financial resources, whether federal, nonfederal, 
commercial or organizational, available in direct support of an 
individual's research endeavors, including, but not limited to, 
research grants, cooperative agreements, contracts, or organizational 
awards, but not training awards, prizes, or gifts). Officials from 
AHRQ, DOD, Education, and NSF also told us they rely on similar 
disclosure from applicants. 

[54] Project officers are agency officials that are responsible for 
managing and overseeing grants. 

[55] Our prior work identified limitations in the ability of DOD and 
NIH to readily access comprehensive medical research information 
funded by other agencies. See [hyperlink, 
http://www.gao.gov/products/GAO-12-342SP]. DOD officials stated that 
DOD and NIH are working together to address these concerns. 
Specifically, NIH has provided a DOD official with access to an NIH 
database that contains information about certain funded health 
research projects. According to DOD officials, they intend to begin 
expanding this effort to all programs funded by DOD's Office of 
Congressionally Directed Medical Research Programs in the beginning of 
calendar year 2014, but could not provide specifics on when it would 
be expanded to autism research. 

[56] See HHS, OARC, NIH, Report to Congress on Activities Related to 
Autism Spectrum Disorder and Other Developmental Disabilities Under 
the Combating Autism Act of 2006 (FY 2006 - FY 2009) (Rockville, Md.: 
December 2010, revised April 2011). 

[57] We interviewed federal members of the IACC, with the exception of 
Administration for Children and Families (ACF) and the Food and Drug 
Administration. ACF awarded funds for one autism-related project in 
fiscal year 2012. The Food and Drug Administration did not fund any 
autism-related projects during the time frame of our review. We 
selected six nonfederal members to interview; however, in July 2013, 
one of the nonfederal members we interviewed stepped down from the 
IACC. 

[58] A cooperative agreement is an alternative assistance instrument 
used instead of a grant whenever substantial federal involvement with 
the recipient during performance is anticipated. 

[59] When collecting and analyzing data, we included a research 
project or a non-research autism-related activity in the fiscal year 
in which it was awarded funds--even if funds remained available for 
obligation in future fiscal years--or, as is the case with the 
Department of Defense, the fiscal year of the appropriation from which 
the project or activity was awarded funds. For example, if a research 
project was ongoing in another fiscal year, but did not receive an 
award in that year, we included the project in the fiscal year in 
which it received an award only. The Agency for Healthcare Research 
and Quality (AHRQ) and Centers for Medicare & Medicaid Services (CMS) 
each awarded one contract under which multiple autism-related projects 
were conducted. The Department of Education (Education) and Substance 
Abuse and Mental Health Services Administration (SAMHSA) also awarded 
contracts of which an autism project was one component. Funding is not 
broken out in these contracts by research project; therefore, the 
award amounts that we report for the AHRQ, CMS, Education, and SAMHSA 
autism projects under each contract are the agencies' estimates of the 
amount of the overall contract awards that was intended to support 
these projects or activities. 

[60] We counted a project once if the project had the same project 
number unless the title changed. If the project title changed during 
the time of our review period, we confirmed that the project start 
dates were the same. If the start dates were the same, we considered 
the project to be the same and counted it once. If the project start 
dates were different, we counted the project as a separate project. If 
the project start date was not available, we looked to see if other 
distinguishing characteristics, such as project description, were 
similar. We did not count a project as a "new" or "separate" project 
if the project received a new award for another project period--the 
total period for which support of a project has been programmatically 
approved. For example, a principal investigator may submit a competing 
continuation application to continue the project after the initial 
project period. In addition, the National Institutes of Health (NIH) 
supports discrete projects performed by investigators in their 
specific area of interest. It also supports organized efforts of 
several principal investigators conducting related research projects. 
In this latter case, we counted each project run by a separate 
principal investigator as a separate project. 

[61] For example, if the portfolio analysis included a project number 
not in the list provided by the agency, we inquired with the agency 
whether the project was autism-specific or had an autism-specific 
component and should therefore be included in our review. We obtained 
fiscal years 2009 and 2010 data online via the web tool. For fiscal 
year 2008, we obtained the portfolio analysis data from the Office of 
Autism Research Coordination. 

[62] We initially collected data directly from the individual federal 
agencies on their autism research and autism-related activities for 
which funds were awarded from fiscal years 2008 to 2011. We opted to 
include the fiscal year 2012 research projects that agencies reported 
to OARC. We relied on the agency data we collected on the non-research 
activities awarded between fiscal years 2008 and 2011. 

[63] Over the years, OARC has changed its guidance on the types of 
projects to include in the portfolio analysis. The most recent 
guidance has more narrow criteria than past years, but since we 
reviewed data from multiple years, overall, the criteria was different. 

[64] If supplemental awards were categorized differently from the base 
project in the same year, we counted them as separate projects. 

[65] As part of its analysis for the portfolio analysis and web tool, 
OARC reviews the agency submissions and can change the strategic plan 
question and objective categorization if it thinks that a project 
should be categorized differently for consistency and accuracy 
purposes. At the time of our review, OARC had not conducted its 
analysis of some of the agencies' fiscal year 2011 and 2012 data. 
Therefore, some of the projects in our review may be categorized to 
the strategic plan research areas and objectives differently than in 
the forthcoming fiscal year 2011 and 2012 portfolio analysis and web 
tool. This applies to approximately 34 projects. In addition, in its 
comments on a draft of this report, Education stated that, in August 
2013, OARC and Education officials held a meeting to clarify the terms 
used to categorize projects. As a result, Education changed the 
categorization of select projects; however, Education officials stated 
that these changes would not have a material effect on this report. 

[66] Projects may have been categorized to the strategic plan 
questions and objectives differently over time. According to OARC 
officials, this is mainly due to more objectives being added to the 
strategic plan as well as improved accuracy in the categorization by 
agencies. Because we are using the most recent fiscal year's strategic 
plan question and objective categories, all of the funding for a 
project will be attributed to that category, regardless of whether the 
project was categorized differently in previous years. 

[67] See for example, [hyperlink, 
http://www.gao.gov/products/GAO-13-279SP] and [hyperlink, 
http://www.gao.gov/products/GAO-12-342SP]. 

[68] Twelve agencies were included in the scope of our review. 
However, the Administration for Community Living (ACL) did not fund 
autism research from fiscal year 2008 through fiscal year 2012. ACL 
funded one non-research autism-related activity during this time 
period and so it is not discussed in this appendix. 

[69] Most of Education's activities included projects that were not 
related to autism. The funding presented for Education represents the 
funding amounts that supported projects, under each activity, that 
were autism-specific or had a component to them that was autism-
specific. CDC funded one non-research activity--Learn the Signs. Act 
Early.--between fiscal years 2008 and 2011. The funding amount for 
Learn the Signs. Act Early. reflects funding to support contracts and 
cooperative agreements, as well as activities conducted internally at 
the agency, such as funding for staffing and personnel costs. 

[70] This funding amount reflects CDC's total funding for Learn the 
Signs. Act Early., with the exception of research funded under this 
activity--totaling approximately $1.7 million. 

[71] The Individuals with Disabilities Education Act is a federal law 
that provides federal funds on a formula grant basis to assist states 
in providing early intervention, special education, and related 
services to eligible children with disabilities. Part B of the act is 
a program administered by state educational agencies to make a free 
appropriate public education available to children with disabilities 
beginning at age 3, and potentially until age 22, depending on state 
law or practice. Part C of the act is a program administered by a lead 
agency in a state to make available early intervention services to 
infants and toddlers with disabilities from birth until age 3, and 
their families. 

[End of section] 

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Washington, DC 20548. 

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