United States Government Accountability Office

GAO Report to the Majority Leader, U.S. 

Senate 

FEDERAL AUTISM 

ACTIVITIES 

Funding for Research 

Has Increased, but 

Agencies Need to 

Resolve Surveillance 

Challenges 

July 2006 

 

GAO-06-700 
What GAO Found

United States Government Accountability Office

Why GAO Did This Study

Highlights

Accountability Integrity Reliability

July 2006

FEDERAL AUTISM ACTIVITIES 

Funding for Research Has Increased, but 

Agencies Need to Resolve Surveillance 

Challenges 

Highlights of GAO-06-700, a report to the 

Majority Leader, U.S. Senate 

Autism is a developmental disorder 

involving communication and 

social impairment. It has no known

cause or cure, and its prevalence is

unknown. The Children’s Health 

Act of 2000 required the 

Department of Health and Human

Services (HHS) and HHS agencies

to conduct activities related to

autism research, surveillance, and 

coordination. This report provides 

information on (1) the National

Institutes of Health’s (NIH) and the 

Centers for Disease Control and

Prevention’s (CDC) autism

activities and these agencies’ 

funding of autism activities, 

(2) programs that federal agencies 

have under way to support services 

for people with autism and 

concerns related to providing

services, and (3) coordination of

federal autism activities. 

What GAO Recommends

GAO recommends that the

Secretaries of HHS and Education

work together to promptly identify 

options for overcoming challenges 

to CDC’s ability to use education 

records for autism surveillance. In 

commenting on a draft of this

report, HHS and Education did not 

agree with the recommendation. 

HHS said the recommendation 

implied that the departments have 

not worked together to identify 

options. Education expressed 

concern that the recommendation 

did not reflect federal privacy 

protections. GAO revised the 

report to reflect these concerns but 

continues to believe the 

recommendation is warranted. 

NIH and CDC have undertaken a range of autism activities, and the agencies 

reported that their funding of autism activities has increased. Many of NIH’s 

activities were developed in response to requirements in the Children’s 

Health Act for NIH to expand, intensify, and coordinate its autism activities. 

According to estimates from NIH, the agency increased funding for autism 

from about $51.5 million in fiscal year 2000 to about $101.6 million in fiscal 

year 2005. CDC supports surveillance activities in certain locations that track 

the prevalence of autism and other developmental disabilities, and its total 

funding of autism activities increased from about $2.1 million in fiscal year 

2000 to about $16.7 million in fiscal year 2005. CDC’s surveillance

methodology has relied, in part, on information in student education records, 

but CDC officials believe that a 2003 change in the Department of 

Education’s (Education) interpretation of relevant federal privacy law has 

hindered CDC’s ability to use this methodology to determine the prevalence 

of autism. Education stated that the law does not allow CDC to access these 

records without written parental consent. A 2003 law required HHS and 

Education to submit a report to the Congress by June 2005 describing ways 

to overcome the challenges CDC faces in obtaining education records. As of 

June 2006, CDC and Education had not agreed on options for overcoming

these challenges and could not estimate when the report would be 

completed. 

Federal agencies support services for people with autism primarily through 

broader disability programs, and some services may not always be available 

to meet the needs of this population. Education and HHS’s Administration 

for Children and Families support services for children with autism through 

education programs for children with disabilities. Other federal agencies 

support services for people with autism, generally as part of broader 

programs to provide services or enhance the delivery of health care to 

people with developmental disabilities. For example, HHS’s Centers for 

Medicare & Medicaid Services supports services to meet the needs of people 

with autism through Medicaid programs targeted to people with 

developmental disabilities. However, many people with autism may not be 

able to obtain services under these Medicaid programs because they do not 

meet eligibility rules or because states limit enrollment. 

The primary vehicle for coordinating federal agencies’ autism activities is the 

Interagency Autism Coordinating Committee (IACC), and although it has 

enhanced communication and coordination among agencies, coordination 

remains limited. The IACC developed recommendations on how to better 

serve people with autism and established autism research goals. Agency

officials told us that federal coordination is limited, in part because, except 

for education services, no agency perceives itself as having lead

responsibility for supporting services for people with autism. 

www.gao.gov/cgi-bin/getrpt?GAO-06-700.

To view the full product, including the scope 

and methodology, click on the link above. 

For more information, contact Cynthia A. 

Bascetta at (202) 512-7101 or 

bascettac@gao.gov. 
Contents 

Letter 1

Results in Brief 3 

Background 5

NIH and CDC Support an Array of Autism Activities and Report 

That Their Funding of Autism Activities Has Increased 8 

Federal Agencies Support Services for People with Autism 

Primarily Through Broader Disability Programs, and Some 

Services May Not Always Be Available 18 

Interagency Autism Coordinating Committee Enhances 

Communication among Federal Agencies, but Coordination Is 

Limited 26

Conclusions 29

Recommendation for Executive Action 29 

Agency Comments and Our Evaluation 30 

Appendix I Scope and Methodology 33 

Appendix II Selected NIH Autism-Related Activities 35 

Appendix III Interagency Autism Coordinating Committee 

Research Goals 36 

Appendix IV Interagency Autism Coordinating Committee 

Services Roadmap Goals and Recommendations 38 

Appendix V Comments from the Department of Health and 

Human Services 40 

Appendix VI Comments from the Department of Education 41 

Page i GAO-06-700 Federal Autism Activities
Appendix VII GAO Contact and Staff Acknowledgments 45 

Tables 

Table 1: NIH’s Estimated Funding of Autism Activities, by 

Institute/Center, Fiscal Years 2000-2005 16 

Table 2: CDC’s Funding of Autism Activities, Fiscal Years 2000-

2005 18 

Table 3: ACF Programs That Support Services for People with 

Autism and Other Disabilities 23 

Abbreviations 

ACF Administration for Children and Families 

CDC Centers for Disease Control and Prevention 

CMS Centers for Medicare & Medicaid Services 

CPEA Collaborative Programs of Excellence in Autism 

FERPA Family Educational Rights and Privacy Act of 1974 

HHS Department of Health and Human Services 

HRSA Health Resources and Services Administration 

IACC Interagency Autism Coordinating Committee 

IDEA Individuals with Disabilities Education Act 

IEP individualized education program 

NIH National Institutes of Health 

NIMH National Institute of Mental Health

SAMHSA Substance Abuse and Mental Health Services 

 Administration 

STAART Studies to Advance Autism Research and Treatment 

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Page ii GAO-06-700 Federal Autism Activities
United States Government Accountability Office

Washington, DC 20548 

July 19, 2006

The Honorable William H. Frist, M.D. 

Majority Leader 

United States Senate 

Dear Senator Frist: 

Autism, a complex and pervasive developmental disorder, is characterized

by impairment in communication and social interaction and by repetitive 

behavioral patterns.1

 The disorder ranges from a severe form, called 

autistic disorder, to a milder form, known as Asperger syndrome. While 

the lifelong condition has no known cause or cure, experts generally agree 

that early diagnosis and treatment may be the best way to improve 

outcomes in later years for people with autism. Because of the complexity

of this disorder, people with autism have diverse needs for an array of 

health, mental health, education, and social services. It is not known how 

many people in the United States currently have the disorder. However, 

the number of children diagnosed with autism has been increasing, and 

the Centers for Disease Control and Prevention (CDC) recently reported 

that at least 300,000 children had autism in the period of 2003 to 2004.2

Several federal agencies are involved in conducting research to identify 

the causes and prevalence of autism and effective treatments for the 

disorder or in supporting education and other services for people with 

autism. The Children’s Health Act of 2000 required the Department of 

Health and Human Services (HHS) and agencies within it to conduct 

certain activities and programs related to autism research and

surveillance3

 and the coordination of HHS’s autism activities.4 In 

 1

In this report, the term autism refers to a spectrum of disorders, including the following 

diagnoses: autistic disorder, Asperger syndrome, and pervasive developmental disorder not 

otherwise specified. These disorders are also commonly referred to collectively as autism

spectrum disorders.

2

Centers for Disease Control and Prevention, Fact Sheet: “MMWR - Parental Report of

Diagnosed Autism in Children Aged 4-17 Years, United States, 2003-2004” (May 4, 2006). 

3

Surveillance is the ongoing collection, analysis, and reporting of data on health conditions 

that can be used to plan, implement, and evaluate public health actions. 

4

Pub. L. No. 106-310, §§ 101-105, 114 Stat. 1101, 1105-1109(2000). 

Page 1 GAO-06-700 Federal Autism Activities
preparation for considering reauthorization of certain provisions of the 

Children’s Health Act, and because of the federal role in supporting autism 

research, surveillance, and services, you asked us to provide information 

on federal activities and programs related to autism. In this report, we 

discuss (1) the National Institutes of Health’s (NIH) and CDC’s current 

autism research and surveillance activities, including those undertaken in 

response to the Children’s Health Act, and these agencies’ funding of 

autism activities for fiscal years 2000 through 2005; (2) programs that 

federal agencies have under way to support services for people with 

autism and concerns related to the provision of services; and 

(3) coordination of autism activities and programs among federal 

departments and agencies. 

To conduct our work, we obtained information from and interviewed 

officials at NIH; CDC; other federal agencies—including HHS’s 

Administration for Children and Families (ACF), Centers for Medicare & 

Medicaid Services (CMS), Health Resources and Services Administration

(HRSA), and Substance Abuse and Mental Health Services Administration

(SAMHSA); and the Department of Education (Education) regarding their 

autism activities and the coordination of autism activities among federal

agencies and departments. We also obtained information from NIH and 

CDC officials on their funding of autism activities in fiscal years 2000—one 

fiscal year before the passage of the Children’s Health Act—through 2005.

The funding data we obtained generally represent obligated funds—funds 

the agencies had legally committed to spend but might not yet have 

expended. In addition, NIH’s data represent the agency’s estimated 

funding of autism research. We did not verify the accuracy of these data;

however, we interviewed agency officials knowledgeable about the data, 

and we determined that they were sufficiently reliable for the purposes of 

this report. It was beyond the scope of our work to identify all programs 

that provided services to individuals with autism; we focused on programs 

designed to meet the specific needs of people with autism or 

developmental disabilities or that have a specific program goal targeted to

this population. It was also beyond our scope to evaluate the quality of the 

activities and programs we describe. However, we reviewed the relevant 

literature and interviewed experts on autism and representatives of 

several professional and advocacy associations to obtain their 

perspectives on services for people with autism. We conducted our work 

from August 2005 through July 2006 in accordance with generally accepted 

government auditing standards. (For additional information on our 

methodology, see app. I.) 

Page 2 GAO-06-700 Federal Autism Activities
NIH and CDC have undertaken an array of autism research and 

surveillance activities, and the agencies reported that their funding of 

autism activities increased since passage of the Children’s Health Act. 

Many of NIH’s activities were developed in response to requirements in 

the Children’s Health Act for NIH to expand, intensify, and coordinate its 

activities related to autism research. For example, NIH developed a 

network of research centers to conduct research on the causes, diagnosis, 

early detection, and treatment of autism. According to estimates from NIH 

officials, the agency increased funding of autism activities from about 

$51.5 million in fiscal year 2000 to about $101.6 million in fiscal year 2005.

CDC supports surveillance programs that track the characteristics and 

prevalence of autism. CDC’s total funding of autism activities increased 

from about $2.1 million in fiscal year 2000 to about $16.7 million in fiscal 

year 2005, according to CDC. Most of CDC’s surveillance programs have 

relied, in part, on collecting information from student education records to 

obtain a complete and unduplicated count of the number of children with 

autism. However, CDC officials believe that a 2003 change in Education’s 

interpretation of the federal law governing the privacy of education 

records—the Family Educational Rights and Privacy Act of 1974

(FERPA)—has hindered CDC’s ability to continue using this methodology. 

Education officials have stated that FERPA requires CDC to obtain written 

parental consent to gain access to personally identifiable education 

records, and CDC does not believe this is an optimal research method 

because it is likely to result in incomplete data. A 2003 law required HHS 

and Education to submit a report to the Congress by June 2005 concerning

CDC’s autism and developmental disabilities surveillance activities, 

including descriptions of the challenges CDC faces in obtaining education 

records and options for overcoming these challenges. As of June 2006, 

CDC and Education officials had not agreed on options for overcoming the 

challenges CDC faces in using education records, and they could not 

estimate when the report would be ready to submit. 

Results in Brief 

Federal agencies support services for people with autism primarily 

through broader programs that focus on disabilities, and some services 

may not always be available to meet the needs of this population. ACF and

Education support services for children with autism through education 

programs for children with disabilities. However, the availability of 

education services for children with disabilities, including autism, varies 

across states and school districts, and schools face challenges in providing 

services for these children. For example, many children with autism have 

communication problems, but some school districts have encountered 

difficulties in providing speech and language services because of a 

shortage of specialists who can provide these services. CMS and HRSA 

Page 3 GAO-06-700 Federal Autism Activities
also support services for people with autism, generally as part of broader 

programs to provide services or enhance the delivery of health care to 

people with developmental disabilities. For example, CMS supports 

community-based services to meet the needs of people with autism 

through Medicaid programs targeted to people with developmental 

disabilities. However, many people with autism may be unable to obtain 

services through these Medicaid programs because they do not meet the

programs’ eligibility rules or because states limit enrollment. 

The primary vehicle for coordinating federal agencies’ autism activities is

the Interagency Autism Coordinating Committee (IACC), and although it 

has enhanced communication and coordination among federal agencies, 

coordination remains limited. Federal officials from member agencies told

us that the IACC improved communication and planning, identified ways 

to improve research and services, and helped agencies to avoid duplicative 

research efforts. For example, the IACC produced a research matrix that 

identifies goals for autism research and an action plan that describes 

challenges to serving people with autism and presents options for 

improving care. However, the IACC services action plan lacks the 

specificity that would help a state or federal agency to easily implement its 

recommendations. For example, the plan indicates there is a lack of 

adequately trained autism providers, but does not specify which types of 

providers are needed. In addition, although officials from IACC member 

agencies told us about programs their agencies had under way related to

autism, very few of those programs represented coordinated efforts across 

agencies. Furthermore, agency officials told us that federal coordination is 

hindered because no federal agency perceives itself as having lead 

responsibility for addressing the service needs of adults with autism or 

services for children beyond education. 

To ensure continued progress toward the development of accurate and 

comparable data on autism characteristics and prevalence and to provide 

the information the Congress required on CDC’s surveillance activities, we

are recommending that the Secretary of Health and Human Services and 

the Secretary of Education work together to promptly identify options for 

overcoming challenges to CDC’s ability to use education records for 

autism surveillance. 

In commenting on a draft of this report, HHS and Education did not agree 

with the report’s recommendation. HHS said that the recommendation 

suggested that HHS and Education had not worked together to identify 

options that would enable CDC to continue to obtain and use education 

records for autism surveillance; we added information to our final report 

Page 4 GAO-06-700 Federal Autism Activities
to indicate that they have had discussions about this issue. Education 

expressed concern that the recommendation did not take into account

FERPA’s privacy protections. Although the draft report described the 

privacy rights afforded by FERPA, we added language to the final report to

acknowledge that autism surveillance and protecting the privacy of 

information in education records are both important goals. We did not 

modify our recommendation because we continue to believe it is 

important for Education and HHS to work together to promptly identify 

options for overcoming the challenges CDC faces in using education 

records to conduct surveillance. 

Autism is a complex developmental disability that impairs development in 

social interaction and communication and is often characterized by 

repetitive behaviors, such as jumping up and down and rocking.5

 In 

particular, people with autism may be unable to process nonverbal 

communication, including body language or inflection, causing them to 

have difficulty understanding differences in tone, such as discerning when

someone is joking. People with autism also often have difficulty 

ascertaining the emotional state of those around them. 

Background 

What is commonly referred to as autism is, more precisely, a group of 

disorders known as autism spectrum disorders. Autistic disorder is a more 

severe form of autism, and Asperger syndrome is a milder form. An 

individual who has symptoms of either of these disorders but does not 

meet their specific criteria is diagnosed with pervasive developmental 

disorder not otherwise specified. Other rare, severe disorders that are 

included in the group of autism spectrum disorders are Rett syndrome6

and childhood disintegrative disorder.7

 While autism typically is detected

 5

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. People with developmental disabilities have 

problems with major life activities such as language, mobility, learning, and independent 

living. Developmental disabilities include cerebral palsy, hearing loss, mental retardation, 

vision impairment, and attention deficit hyperactivity disorder. 

6

Rett syndrome affects girls almost exclusively; after a period of normal development, at 

some point from 6 to 18 months, a child’s mental and social development regresses. 

7

In childhood disintegrative disorder, the child has age-appropriate social and 

communication skills for a period of time and begins regressing between ages 3 and 4, on 

average; the loss of skills is more dramatic in childhood disintegrative disorder than in

autistic disorder. 

Page 5 GAO-06-700 Federal Autism Activities
during the first 3 years of life, the symptoms, degree, and manner of 

manifestation range substantially among those with autism. An individual

with autism may have some degree of mental retardation or may have 

above-average intelligence, an expansive vocabulary, or extraordinary 

abilities in certain areas, such as mathematics or music. 

Symptoms that children with autism may exhibit include lack of 

meaningful gestures by 12 months of age, lack of speech by 16 months of 

age, inability to respond to one’s name, a loss of language or other social 

skills previously gained, poor eye contact, atypical attachment to a 

particular toy or object, or inability to use toys or objects. Furthermore, 

children with autism may not respond like other children. For example, 

they may seem indifferent, seldom seek comfort, and resist or passively 

accept affection. Because it is common for individuals with autism to have 

difficulty regulating their emotions, they may behave inappropriately, 

disruptively, or even aggressively. They may become frustrated when they

are placed in a new environment, and when frustrated may pull their hair, 

bang their heads, or attack others or themselves. 

Currently, there is no consensus about the cause of autism. While autism is 

known to be the result of a neurological disorder that affects the normal 

functioning of the brain, it is not known precisely what causes the brain 

disorder or which factors are associated with particular severity levels 

within the autism spectrum. Theories include genetic components, 

environmental components, and some combination of genetics and the 

environment. 

Experts generally agree that early detection is the best hope of appropriate 

treatment and best quality of life in later years for those with autism. Most 

also agree that people with autism generally respond better to highly 

structured programs tailored to each individual’s particular developmental 

deficits. To date, most treatment for children with autism has focused on 

education interventions, which may include speech and language therapy,

occupational therapy, and behavior modification. Under the Individuals 

with Disabilities Education Act (IDEA),8

 states are required to provide 

eligible children with needed special education and related services. Some 

physicians may prescribe medications to treat behavioral problems such

as aggression and self-injurious behavior; these medications are generally

the same medications used to treat similar symptoms in other disorders. 

 8

20 U.S.C. § 1400 et seq. 

Page 6 GAO-06-700 Federal Autism Activities
It is not known how many people in the United States currently have 

autism. In 1996, CDC began conducting population-based studies to 

determine the prevalence of and risk factors for autism,9

 and the agency 

has reported prevalence rates for children in two communities.10 These 

rates were 3.4 and 6.7 per 1,000 children and were higher than previously 

reported prevalence rates.11 In addition, in May 2006, CDC reported 

estimated autism prevalence rates for the period of 2003 to 2004 based on 

two national surveys, one of which indicated a rate of 5.5 per 1,000

children and the other of which indicated a rate of 5.7 per 1,000 children.12

Some experts have attributed the reported increase in prevalence to 

changes in diagnostic criteria, and some have contended that it reflects 

improvements in early detection. The apparent increase in prevalence, 

coupled with the lack of a known cause or cure, has sparked concern, 

particularly among families with affected children. 

The Children’s Health Act of 2000 required HHS and certain HHS agencies 

to conduct various activities and programs related to autism. NIH was 

charged with expanding, intensifying, and coordinating research on autism 

and awarding grants for autism research centers of excellence. NIH was 

also directed to establish a program through which tissue samples and 

genetic materials would be made available for research and to establish a 

means through which the public could obtain information and provide 

comments on NIH’s autism-related activities. In addition, the law required 

CDC to establish an autism and developmental disabilities surveillance 

program through regional centers of excellence to collect and analyze 

information and coordinate research related to the epidemiology of 

autism. The law also required the establishment of an interagency autism 

 9

Prevalence refers to the number of cases present during a particular interval of time. 

10Centers for Disease Control and Prevention, Prevalence of Autism in Brick Township, 

New Jersey, 1998: Community Report (Atlanta, Ga.: 2000), and Yeargin-Allsopp et al., 

“Prevalence of Autism in a U.S. Metropolitan Area,” Journal of the American Medical

Association, vol. 289, no. 1 (2003). 

11Population-based studies conducted in the 1980s yielded prevalence rates of .33 and .12 

per 1,000 children. 

12Centers for Disease Control and Prevention, Fact Sheet: “MMWR - Parental Report of

Diagnosed Autism in Children Aged 4-17 Years, United States, 2003-2004” (May 4, 2006). 

These rates were calculated using parent-reported data from two national surveys—the 

National Health Interview Survey administered by CDC and the National Survey of

Children’s Health sponsored by HRSA and administered by CDC. The surveys asked 

parents if they were ever told by a doctor or other health care provider that their child had 

autism. 

Page 7 GAO-06-700 Federal Autism Activities
coordinating committee to coordinate efforts within HHS. Many of these 

activities have been funded through lump sum appropriations to NIH and 

CDC, and the Congress has generally not appropriated funds specifically 

for autism projects and activities.13

NIH and CDC support an array of autism activities, and officials from both 

agencies told us that their funding of autism activities increased from 

fiscal year 2000 to fiscal year 2005. NIH’s efforts include research on 

determining the causes of autism, improving the diagnosis and treatment 

of autism, and improving the delivery of autism-related services. CDC 

supports surveillance activities, including tracking the characteristics and 

prevalence of autism. CDC’s surveillance programs have relied on 

information from multiple sources, including student education records, to 

obtain a complete and unduplicated count of the number of children with 

autism. However, CDC officials believe a 2003 change in Education’s 

interpretation of the federal law governing the privacy of education 

records has hindered CDC’s ability to continue to use this methodology. 

HHS and Education were required to submit a report to congressional 

committees in June 2005 identifying how to overcome the challenges CDC 

faces in using education records to conduct surveillance; as of June 2006, 

the agencies had not agreed on options for overcoming these challenges 

and had not completed the report. NIH’s estimated funding of autism 

research increased from about $51.5 million in fiscal year 2000 to about 

$101.6 million in fiscal year 2005. CDC’s total funding of autism activities 

increased from about $2.1 million to about $16.7 million during the same 

period. 

NIH has undertaken research activities that focus on determining the 

causes of autism, improving the diagnosis and treatment of autism, and 

improving the provision of services related to autism. (See app. II for 

information on selected NIH autism activities.) Many of these activities 

were developed to respond to the Children’s Health Act’s general 

requirement that NIH expand, intensify, and coordinate its autism research

activities and to the act’s specific requirements, such as that NIH establish 

centers for conducting research on autism and establish a program 

NIH and CDC Support 

an Array of Autism 

Activities and Report 

That Their Funding of 

Autism Activities Has 

Increased 

NIH Supports a Wide Array 

of Research Related to 

Autism 

 13One exception is a supplemental appropriation to HHS for fiscal year 2003 in which 

$1 million was made available to the Geisinger Health System, Harrisburg, Pennsylvania, to

establish centers of excellence for the treatment of autism. Pub. L. No. 108-11, 117 Stat. 

559, 595. 

Page 8 GAO-06-700 Federal Autism Activities
through which tissue samples and genetic materials would be available for 

research. 

NIH research that focuses on determining the causes of autism includes 

efforts to identify genes that increase susceptibility to the disorder and 

efforts to ascertain the role of environmental exposures. For example, 

NIH’s National Institute of Environmental Health Sciences, in partnership 

with the Environmental Protection Agency, supports a national network of 

centers to examine the effect of environmental exposures on children’s 

health. Of the 11 centers this program supports, 2 centers conduct 

research on environmental causes of autism and perform clinical 

evaluations of children with autism. 

NIH also conducts research evaluating specific treatments for the 

symptoms associated with autism. Several federal officials and advocacy

association representatives told us that there are not enough evidencebased treatments for people with autism, and NIH has several activities to 

help develop such treatments. For example, in response to the increasing 

use of medications to treat symptoms of autism, the National Institute of 

Mental Health (NIMH) in 1997 established a network of research sites to 

study the use of psychotropic drugs in the treatment of autism. In 2002, the 

network was renewed and expanded to include psychosocial and 

behavioral interventions. Support for the research is designated 

specifically for evaluating treatments for autism, and the networks are 

intended to be a national resource that will expedite clinical trials in 

children. For example, one study found that methylphenidate—a 

treatment for attention deficit/hyperactivity disorder—was often effective

for improving inattention, hyperactivity, impulsivity, and distractibility in 

children with autism who participated in the study.14

NIH’s largest investment in autism research is through its support of 

networks of research centers, such as the Collaborative Programs of 

Excellence in Autism (CPEA), consisting of nine centers,15 and the Studies 

 14Research Units on Pediatric Psychopharmacology Autism Network, “Randomized, 

Controlled, Crossover Trial of Methylphenidate in Pervasive Developmental Disorders With

Hyperactivity,” Archives of General Psychiatry, vol. 62 (2005). 

15The CPEAs are located at Boston University; University of California, Davis; University of 

California, Los Angeles; University of Pittsburgh; University of Rochester Medical Center;

University of Texas Health Science Center at Houston; University of Utah (Salt Lake City); 

University of Washington (Seattle); and Yale University (New Haven, Connecticut). The

CPEAs collectively make up the Network on the Neurobiology and Genetics of Autism. 

Page 9 GAO-06-700 Federal Autism Activities
to Advance Autism Research and Treatment (STAART), consisting of eight 

centers16 and a data coordination center. NIH’s National Institute of Child 

Health and Human Development and National Institute on Deafness and 

Other Communication Disorders established the CPEA network in 1997; in 

2002, they renewed the network for an additional 5 years and in 2003 

expanded it to include a data coordinating center. NIH began the STAART 

program in 2001 in response to the Children’s Health Act. Some centers 

participate in both networks, which have similar purposes in conducting 

research on the causes, diagnosis, early detection, and treatment of 

autism. Unlike the CPEA network, the STAART network requires that each 

center have at least one treatment project. NIH officials told us the 

institutes are planning to unify the STAART centers and CPEAs into a new 

network—Autism Centers of Excellence—in an effort to improve 

coordination of NIH-sponsored efforts, avoid duplication, and maximize 

the efficient use of resources. 

NIH also supports programs that provide research resources, such as 

genetic materials and tissue samples, to scientists working on autism. For 

example, NIH’s National Institute of Neurological Disorders and Stroke 

and NIMH are providing support to the Harvard Brain Tissue Resource 

Center to increase the collection of brains from individuals diagnosed with 

autism, which is expected to facilitate neurobiological research on autism. 

In addition, several NIH institutes and centers support the collection, 

sharing, and distribution of genetic and tissue materials across the 

scientific community through NIMH’s Autism Genetics Initiative. 

NIH officials told us that through the agency’s internal Autism 

Coordinating Committee, five NIH institutes collaborate closely on their 

autism activities, such as managing grant programs, developing research 

program announcements, and responding to inquiries from researchers.17

For example, to encourage investigator-initiated studies, the five institutes 

jointly sponsor a broadly based program announcement that solicits 

research proposals designed to elucidate various issues related to autism, 

 16The STAART centers are located at Boston University; Kennedy Krieger Institute 

(Baltimore, Maryland); Mt. Sinai Medical School (New York, New York); University of 

California, Los Angeles; University of North Carolina, Chapel Hill; University of Rochester; 

University of Washington (Seattle); and Yale University (New Haven, Connecticut). 

17The five institutes are the National Institute of Child Health and Human Development, 

National Institute on Deafness and Other Communication Disorders, National Institute of 

Environmental Health Sciences, NIMH, and National Institute of Neurological Disorders

and Stroke. 

Page 10 GAO-06-700 Federal Autism Activities
including causes and the optimal way of delivering services. NIH officials 

told us that there is usually no obvious scientific demarcation for which 

institute is the best fit for a grant application, so the committee generally 

determines the distribution of grants according to available resources. The 

committee is also working with the NIH Center for Information 

Technology to create and implement a National Database for Autism 

Research. NIH officials expect the database to allow researchers to share 

data; make disparate databases available through a single source; and 

coordinate data with other federal databases, such as NIMH’s Autism 

Genetics Repository. NIH officials also told us that the committee drafted

the request for applications for the new Autism Centers of Excellence

program. 

CDC Supports Autism 

Surveillance, but Faces 

Challenges in Its Ability to 

Report Accurate 

Prevalence Data 

CDC supports surveillance activities in certain locations that track the 

prevalence of autism and other developmental disabilities in children.18 In 

1996, CDC began collecting information on the prevalence of autism as a 

part of its Metropolitan Atlanta Developmental Disabilities Surveillance 

Program, and in 1999, CDC began supporting autism surveillance in West 

Virginia. CDC expanded its surveillance activities in fiscal year 2000 to 

form the Autism and Developmental Disabilities Monitoring Network, 

which initially consisted of 5 project sites established to conduct 

surveillance in 6 states. Subsequent expansions of the network in fiscal 

years 2002 and 2003 added additional project sites and states, and as of 

February 2006, the network consisted of 10 project sites established to 

conduct surveillance in 11 states.19 CDC also supports surveillance at 6 

additional sites through its Centers of Excellence for Autism and 

Developmental Disabilities Research and Epidemiology, established in 

2001 in response to the Children’s Health Act.20 In addition to engaging in 

surveillance, these sites conduct research to determine the causes of and 

 18These other developmental disabilities are cerebral palsy, hearing loss, mental 

retardation, and vision impairment. 

19The states are Alabama, Arizona, Arkansas, Florida, Illinois, Missouri, New Jersey, South 

Carolina, Utah, West Virginia, and Wisconsin.

20The centers are at the California Department of Health Services, CDC’s National Center

on Birth Defects and Developmental Disabilities, Colorado Department of Public Health 

and Environment, Johns Hopkins University, University of North Carolina at Chapel Hill,

and University of Pennsylvania. 

Page 11 GAO-06-700 Federal Autism Activities
risk factors for autism.21 CDC, through its autism surveillance activities, 

also collects information on the characteristics of autism, including the 

severity of symptoms and the presence of co-occurring disorders. 

To obtain a complete and unduplicated count of the number of children 

with autism, most of CDC’s surveillance sites have shared the same 

method of comparing information from multiple data sources—including 

student education records, medical records, and vital records. For 

example, according to CDC officials, information in education records has 

been used to identify children with autism who were not identifiable from 

other sources.22 In addition, a child with autism may be identified in 

multiple data sources, and comparing these sources helps ensure the child 

is not counted more than once. CDC officials said that to compare multiple 

data sources accurately, the surveillance sites must have personally 

identifiable data, such as the child’s name or Social Security number. To 

protect the privacy of information in children’s education records, after 

CDC researchers are sure they have an unduplicated count, all personally 

identifiable markers in the data sets are replaced with codes that are not 

linked to personally identifiable data, according to CDC officials. 

CDC officials believe the agency’s surveillance programs will not be able

to continue using this methodology because of a 2003 change in 

Education’s interpretation of FERPA.23 FERPA guarantees parents access 

to their child’s education records and protects the privacy of these records 

by prohibiting their disclosure without parents’ prior written consent, 

 21In response to a requirement of the Children’s Health Act to establish an information 

clearinghouse, CDC established a Data Coordinating Center to collect and store data and to

coordinate data management between the Autism and Developmental Disabilities 

Monitoring Network grantees and the Centers of Excellence for Autism and Developmental 

Disabilities Research and Epidemiology grantees.

22Centers for Disease Control and Prevention, National Center on Birth Defects and 

Developmental Disabilities, Developmental Disabilities Surveillance: Methods and Results 

from the Metropolitan Atlanta Developmental Disabilities Surveillance Program 

(MADDSP) (Atlanta, Ga., 2004). To identify autism cases, the site applied diagnostic 

criteria for autism contained in the Diagnostic and Statistical Manual of Mental 

Disorders - Fourth Edition to information obtained from student education records, which 

included behavioral descriptions and information on the child’s developmental history.

2320 U.S.C. § 1232g. 

Page 12 GAO-06-700 Federal Autism Activities
except in limited circumstances.24 In December 2000, CDC entered into a 

memorandum of agreement with Education that designated CDC an 

authorized representative of Education, which allowed CDC access to data 

in personally identifiable education records for its surveillance program in

Atlanta. Several other sites in the monitoring network entered into similar 

agreements with their respective state education agencies to gain access 

to this type of data. However, in 2003, Education determined that this 

sharing of information was not consistent with FERPA, stating that only 

employees, contractors, and others under the direct control of a state 

education agency can be designated as its authorized representative. In 

response to subsequent inquiries, Education sent letters to two states’ 

education agencies informing them of this reinterpretation of FERPA. It 

posted these letters on the Education Web site.25 The agreement between 

Education and CDC that governed the surveillance program in Atlanta 

expired in December 2005, and based on its 2003 interpretation of the 

statute, Education did not renew it. According to CDC, as of May 2006, 9 of 

its 16 autism surveillance sites26 were operating under state-level

memorandums of agreement to access education records, while the 

Atlanta site had stopped collecting data and the other sites were using 

other methodologies, such as collecting data only from medical sources.

CDC and Education officials have discussed issues related to CDC’s use of 

education records for autism surveillance. Education officials have stated 

that FERPA requires CDC to obtain written parental consent to gain 

access to personally identifiable education records and that as an 

alternative, CDC could choose to conduct its surveillance activities using 

aggregated data. CDC officials said that obtaining parental consent is not 

an optimal research method because, in general, low proportions of 

 24FERPA permits disclosure of personally identifiable education records without the 

written consent of parents to, for example, an authorized representative of Education or a 

state education agency, provided that the disclosure is in connection with the audit and 

evaluation of federally supported education programs or the enforcement of federal legal 

requirements that relate to such programs. The records must also be protected so that 

personally identifiable information is not improperly disclosed and the records are 

destroyed when no longer needed. 

25Education told us that it has also provided training to local school districts, state 

departments of education, and others on the requirements of FERPA. 

26These 16 sites consist of the 10 sites conducting surveillance in CDC’s Autism and 

Developmental Disability Monitoring Network and the 6 sites conducting surveillance 

through CDC’s Centers of Excellence for Autism and Developmental Disabilities Research 

and Epidemiology. 

Page 13 GAO-06-700 Federal Autism Activities
parents of school-aged children respond to such requests, resulting in 

incomplete data. They also said that personally identifiable data are 

needed during the initial stage of surveillance to ensure an unduplicated

count of individuals with autism. CDC officials discussed with us 

approaches that they believe would allow CDC to continue surveillance 

using personally identifiable education records. The options CDC 

identified would require either legislative or administrative action, 

including amending FERPA, the Children’s Health Act, or the Public 

Health Service Act to permit autism surveillance activities without 

parental consent or to provide for a passive consent system for parents;27

or allowing staff from education agencies to oversee or participate in data 

collection. 

The Birth Defects and Developmental Disabilities Prevention Act of 2003 

required the Secretary of HHS and the Secretary of Education to submit a 

report to congressional committees28 by June 2005 concerning CDC’s 

autism and developmental disabilities surveillance activities, including a 

description of challenges to CDC’s obtaining education records.29 The 

report is also to describe methods for overcoming these challenges, such 

as efforts to increase parental consent, and to describe the justifications 

for any recommendations for legislative changes, including changes to 

FERPA. As of June 2006, CDC and Education had not agreed on options 

for overcoming the challenges CDC faces in using education records, and

CDC and Education officials told us they could not estimate when the 

report would be ready for submission. CDC officials told us that the 

agency was developing a draft of the report, which Education would then 

need to review. 

 27In a passive consent system, access to education records would be granted automatically 

unless parents informed the school that they did not want anyone else to have access.

Passive consent systems are not authorized under FERPA. 

28The report is to be submitted to the Senate Committee on Health, Education, Labor, and 

Pensions and the House Committees on Energy and Commerce and Education and the 

Workforce. 

2942 U.S.C. § 247b-4b note. 

Page 14 GAO-06-700 Federal Autism Activities
NIH’s funding of autism research increased from about $51.5 million in 

fiscal year 2000 to about $101.6 million in fiscal year 2005, based on 

estimated funding data provided by NIH. (See table 1.) NIH data show that 

NIMH has provided the greatest amount of support for autism research 

among NIH’s institutes, and its estimated funding for autism research 

increased from about $22.6 million in fiscal year 2000 to about 

$58.4 million in fiscal year 2005. NIMH considers the total amount awarded 

for each project as autism funding, even when autism is only one of 

several disabilities being studied. According to NIMH, many of the 

institute’s grants target a broad question related to neurodevelopment that 

has implications for autism and many other developmental disabilities. 

Because the research has the potential to produce important information 

about autism, however, NIMH believes that 100 percent of the grant 

amount should be considered autism funding even though the grant also 

covers other disabilities. 

NIH and CDC Reported 

That Their Funding of 

Activities Related to 

Autism Increased from 

Fiscal Year 2000 to Fiscal 

Year 2005 

Page 15 GAO-06-700 Federal Autism Activities
Table 1: NIH’s Estimated Funding of Autism Activities, by Institute/Center, Fiscal Years 2000-2005

Dollars in thousands 

Fiscal year 

Institute/center 2000 2001 2002 2003 2004 2005

National Institute of Mental Health $22,629 $24,816 $36,279 $51,096 $54,102a$58,406

National Institute of Child Health and Human Development 15,409 15,803 19,889 21,852 21,530 19,461

National Institute of Neurological Disorders and Stroke 5,321 6,625 8,451 12,888 12,242 13,826

National Institute on Deafness and Other Communication 

Disorders 1,782 1,857 2,470 2,923 2,751 4,129

National Institute of Environmental Health Sciences b 972 1,025 1,333 1,480 1,424

National Center for Research Resources 1,338 1,924 1,499 1,014 1,049 920

National Human Genome Research Institute 4,505 2,857 3,458 1,831 440 554

National Institute on Aging 380 311 400 389 332 341

National Institute of Nursing Research 110 320 327 b b 288

Roadmap for Medical Researchc b b b b 296 2,283

Total $51,474 $55,485 $73,798 $93,326 $94,222 $101,632

Source: GAO analysis of NIH data. 

Notes: The funding data in this table represent obligated funds—funds NIH had legally committed to 

spend but might not yet have expended—and represent NIH’s estimated funding of autism research.

NIMH considers the total amount awarded for each project as autism funding, even when autism is

only one of several disabilities being studied. According to NIH, the other institutes prorate the 

research dollars, estimating a percentage of the project that focuses on autism. The table includes 

the NIH institutes and centers that NIH reported to us as funding autism research in fiscal year 2005. 

According to NIH, the National Center for Complementary and Alternative Medicine funded a 

relatively small amount of autism research in fiscal years 2000 and 2001 and the National Institute on 

Alcohol Abuse and Alcoholism similarly funded a relatively small amount of autism research in fiscal 

years 2001 through 2003; neither funded autism research in fiscal year 2005. 

a

This amount differs from the amount NIH has used when publicly reporting its total funding of autism 

activities. It has used the amount $59,708,000 for NIMH’s funding of autism for fiscal year 2004. 

NIMH officials told us that this figure was incorrect because of a clerical error. 

b

NIH did not report autism funding for the institute in this year. 

c

In addition to funding research for autism through institutes and centers, NIH funded research for 

autism through its Roadmap for Medical Research. The goal of the roadmap is to identify research 

opportunities and gaps in biomedical research that no single institute at NIH can undertake alone and

that NIH officials believe the agency as a whole must address. 

Page 16 GAO-06-700 Federal Autism Activities
Estimated combined funding for autism research at other NIH institutes 

increased from about $28.9 million in fiscal year 2000 to about 

$43.2 million in fiscal year 2005.30 Unlike NIMH, these institutes prorate the 

research dollars, estimating a percentage of the project that focuses on 

autism, but NIH officials told us that there is variability in how these 

institutes estimate the prorated amounts. NIH officials told us that the 

agency is developing a single system for disease coding across all NIH 

institutes; the agency anticipates implementing this system in October 

2007. 

CDC’s funding of autism activities increased from about $2.1 million in 

fiscal year 2000 to about $16.7 million in fiscal year 2005. The National 

Center on Birth Defects and Developmental Disabilities has provided the 

most support for CDC’s autism activities, and agency officials told us that 

the center’s funding of these activities increased from about $1.1 million to 

about $14.9 million during this period. CDC’s funding amounts include the 

agency’s funding of autism and developmental disabilities surveillance 

activities and of research to determine the causes and characteristics of 

autism. CDC officials told us that CDC counts the total amount of its 

funding of the surveillance activities as autism funding because 

researchers need to collect information on other developmental 

disabilities to identify autism cases. (See table 2 for CDC’s funding of 

autism activities for fiscal years 2000 through 2005.) 

 30According to NIH, the funding for autism research in fiscal year 2005 includes funding

provided through the agency’s Roadmap for Medical Research. The goal of the roadmap is

to identify research opportunities and gaps in biomedical research that no single NIH

institute can undertake alone and that NIH officials believe the agency as a whole must 

address to make the greatest impact on the progress of medical research. 

Page 17 GAO-06-700 Federal Autism Activities
Table 2: CDC’s Funding of Autism Activities, Fiscal Years 2000-2005 

Dollars in thousands 

Fiscal year 

Center/office 2000 2001 2002 2003 2004 2005

National Center on Birth Defects and Developmental Disabilitiesa$1,140 $5,500 $8,443 $10,811 $13,242 $14,873

National Immunization Program 1,000 1,000 2,749 3,298 3,592 370

National Center for Infectious Diseases 0 0 0 0 15 15

National Center for Environmental Health/Agency for Toxic

Substances and Disease Registry 

0 20 25 30 5 113

Office of Public Health Research 0 0 0 0 600 600

Otherb0 1,234 0 248 695 744

Total $2,140 $7,754 $11,217 $14,387 $18,149 $16,715

Source: GAO analysis of CDC data.

Notes: These funding amounts include CDC’s funding of autism and developmental disabilities

surveillance activities and of research to determine the causes and characteristics of autism. CDC 

counts the total amount of its funding of the surveillance activities as autism funding because 

researchers need to collect information on other developmental disabilities to identify autism cases.

The funding data in this table generally represent obligated funds—funds CDC had legally committed 

to spend but might not yet have expended. Dollars are rounded to the nearest thousand. 

a

The funding for this center represents appropriated amounts that CDC allocated to autism activities. 

b

According to CDC officials, these funds were awarded as grants to organizations listed in conference 

reports accompanying appropriations legislation, and the grants were awarded under the authority of 

the Public Health Service Act. 

Federal agencies support services for people with autism primarily 

through broader programs that focus on disabilities, and some services 

may not always be available to meet the needs of this population. ACF and

Education support education services for children with autism through 

broader programs for people with disabilities. ACF’s Head Start program 

provides early childhood education to young children in low-income 

families and is often the first opportunity to identify a child’s disability. 

Education supports programs that provide special education services for 

children and young adults with disabilities, but schools face challenges in 

providing services. Other federal agencies, including HRSA and CMS, 

support programs that provide services or enhance the delivery of health 

care for people with developmental disabilities. For example, CMS 

supports community-based services to meet the needs of people with 

autism through Medicaid programs; however, many people with autism 

may not be able to obtain services through these programs. 

Federal Agencies 

Support Services for 

People with Autism 

Primarily Through 

Broader Disability 

Programs, and Some 

Services May Not 

Always Be Available 

Page 18 GAO-06-700 Federal Autism Activities
ACF and Education administer programs that identify and educate 

children with disabilities, including autism. ACF’s Head Start program 

provides early childhood education and services to children from lowincome families, generally from birth to age five,31 with the goal of 

increasing school readiness. Head Start policies and procedures must 

ensure that at least 10 percent of all enrollment opportunities in each state 

are available to children with disabilities and ensure that services are 

provided to meet their individual needs.32 For a child enrolled in Head 

Start, the program is often the first opportunity to identify a disability 

affecting the child’s development. According to ACF, in fiscal year 2004,

about 55 percent of the children with disabilities enrolled in Head Start 

had their disabilities identified after becoming enrolled. 

Services for Children with 

Autism Are Delivered 

Primarily through 

Education Programs for 

Children with Disabilities, 

and Schools Face 

Challenges in Providing 

Services 

Education has responsibility for implementing IDEA,33 whose purpose is to 

provide a free and appropriate public education to children with 

disabilities. Under IDEA, Education supports early intervention services 

for children under age 3 through the Early Intervention Program for 

Infants and Toddlers with Disabilities, which provides grants to states to 

implement programs to reduce the risk that children will have a 

substantial developmental disability in the future.

34 Beginning at age 3 and

generally through age 21,

35 children with disabilities are eligible to receive 

special education and related services that conform with an individualized 

education program (IEP). IDEA requires parents, teachers, school 

personnel, and sometimes the student to work as a team to develop an IEP 

that includes annual goals that reflect the child’s educational, behavioral, 

and physical needs and describes the services that the student will receive. 

Each school is responsible for ensuring that the IEP is carried out as 

written, notifying parents of the child’s progress, and reevaluating the 

child at least every 3 years. Under IDEA, parents have several options to 

 31Head Start is authorized to serve children at any age prior to compulsory school 

attendance in the state. 

3220 U.S.C. § 9835(d). 

33Autism is one of several disabilities for which children are eligible to receive special 

education services under IDEA. 

34See GAO, Individuals with Disabilities Education Act: Education Should Provide

Additional Guidance to Help States Smoothly Transition Children to Preschool, 

GAO-06-26 (Washington, D.C.: Dec. 14, 2005).

3520 U.S.C. § 1401(9), 1412(a)(1)(A). Eligibility terminates when the child receives a high 

school diploma or when the child is not otherwise eligible under state law. 20 U.S.C. §

1414(c)(5)(B)(i). 

Page 19 GAO-06-700 Federal Autism Activities
advocate and negotiate for what will be included in the IEP. If parents 

disagree with the education plan determined by the IEP team, they may 

discuss their concerns with other members of the team; if agreement is not 

reached, parents may ask for mediation, file a complaint with the state 

education agency, or request a hearing before the appropriate education 

agency.

36 Parents who are not satisfied with the outcome of the hearing 

may file a lawsuit under certain circumstances. 

The availability of education services for children with disabilities, 

including autism, varies across states and school districts, and schools 

face challenges in providing services for these children. For example, 

many children with autism have communication problems, but some 

school districts have encountered difficulties in providing speech and

language services because of a shortage of specialists who can provide 

these services.37 In addition, some school districts have found it difficult to

provide certain recommended interventions for particular children—such 

as one-to-one instruction—because of their high cost. The National 

Academies’ National Research Council reported that schools, faced with 

high costs for some of the recommended treatments for their students 

with autism, have tried to find a way of providing services they believe are

appropriate but that will not overburden their budgets.38 The National 

Research Council concluded that school districts need financial help to 

provide appropriate services for children with autism, and the council 

recommended that states develop strategies for coordinating state 

education agencies with other state agencies to fund interventions for 

children with autism.39

Education also supports transition services that are designed to provide 

skills training, job training, and job placement to young adults with 

disabilities who are in transition from high school to postsecondary 

education or employment. When a child receiving special education 

 36Parents may also obtain an independent education evaluation of their child at any time at

their own expense. 

37See GAO, Special Education: Numbers of Formal Disputes Are Generally Low and

States Are Using Mediation and Other Strategies to Resolve Conflicts, GAO-03-897 

(Washington, D.C.: Sept. 9, 2003). 

38National Research Council, Educating Children with Autism (Washington, D.C.: 2001). 

39The council recommends that states develop a state fund for intensive intervention or 

consider other sources of funding currently in place in some states to provide education

services to children with autism. 

Page 20 GAO-06-700 Federal Autism Activities
services under IDEA reaches age 16, the IEP must identify the transition 

services needed to reach the post-high school goals set in the IEP. 

Education supports state vocational rehabilitation agencies that can help

individuals with disabilities prepare for and engage in gainful

employment.40 State vocational rehabilitation programs must develop 

individualized plans for employment for students eligible for vocational 

rehabilitation services before they leave school.

41 Furthermore, for a 

student with a disability who is receiving special education services, this 

plan must be coordinated with the goals, objectives, and services in the 

student’s IEP. 

Children with disabilities, including autism, may not always receive the 

transition services they need. For example, under the vocational 

rehabilitation program, although all people with physical or mental 

impairments are potentially eligible for services, we previously reported 

that states may serve only those with the most significant disabilities in 

times of funding constraint, and that according to Education officials, a 

number of states have waiting lists for vocational rehabilitation services.42

We also reported that many local school systems do not have transition 

coordinators or work preparation programs to adequately plan for student 

transitions, and that the task of linking schools with adult service 

providers falls on special education personnel who may not be trained to 

address the transition needs of young adults with disabilities. In addition, 

according to representatives of advocacy associations, special education 

programs may not sufficiently prepare students for life beyond the 

classroom. For example, although job skills training in schools may be 

able to help young adults with autism obtain employment, the young 

adults may not have developed the social or independent living skills, such 

as the ability to navigate the public transportation system, necessary to 

keep their jobs. 

 40Children with disabilities, including autism, may also be eligible for transition services 

through the Department of Labor’s Workforce Investment Act youth program and the

Social Security Administration’s Ticket to Work and Self-Sufficiency program. For

additional information on the transition services provided by these programs, see GAO,

Special Education: Federal Actions Can Assist States in Improving Postsecondary

Outcomes for Youth, GAO-03-773 (Washington, D.C.: July 31, 2003). 

41A student is eligible for vocational rehabilitation services if the state vocational 

rehabilitation agency determines that the student has a physical or mental disability that 

constitutes or results in a substantial impediment to employment. 

42GAO-03-773. 

Page 21 GAO-06-700 Federal Autism Activities
Education also supports programs to develop and implement evidencebased practices for educating children with autism. Under IDEA, 

Education administers a discretionary grant program that in fiscal year 

2004 made over 40 awards for projects focused on autism and related 

developmental disabilities. The grant projects currently under way include 

research on education-based treatment interventions and training for 

parents and professionals working with children with autism. Education 

supports six Professional Development in Autism sites across the nation 

through which school personnel and families are provided training, 

support, and information on how to use evidence-based practices for 

students with autism.43 In addition, Education’s Institute of Education 

Sciences reported that it will sponsor a competitive grant research 

program in fiscal year 2007 to develop or test the effectiveness of 

comprehensive pre-school and school-based interventions that improve 

the cognitive, communication, academic, social, and behavioral outcomes 

of children with autism. 

Other Federal Programs 

That Support Autism 

Services Also Generally 

Have a Broader Disability 

Focus, and Experts and 

Officials Report Autism 

Services Are Limited 

Several federal agencies support services for people with autism through 

programs that provide services or enhance the delivery of care for people 

with developmental disabilities. Experts and officials from federal 

agencies told us there are not enough services—including behavioral 

therapy, speech therapy, occupational therapy, and supported living 

services—to meet the needs of people with autism. In addition, experts 

and federal officials have said that the shortage of professionals trained to 

serve people with autism makes it difficult for people with this disability to 

obtain the full range of services they need. 

Through programs targeted to people with developmental disabilities, ACF 

supports services for people with autism and training for professionals 

who work with this population. The agency supports the following grant 

programs to help meet the needs of individuals with developmental 

disabilities: the State Councils on Developmental Disabilities, Projects of 

National Significance, and State Protection and Advocacy Agencies. (See 

table 3 for a description of these programs.) 

 43The sites are located at the University of Washington (Seattle); University of Colorado at 

Denver; University of Kansas (Kansas City); Oakstone Academy (Columbus, Ohio);

Maryland Coalition for Inclusive Education (Hanover); and University of South Florida 

(Tampa). 

Page 22 GAO-06-700 Federal Autism Activities
Table 3: ACF Programs That Support Services for People with Autism and Other 

Disabilities 

Program Purpose Services/activities

State Councils on 

Developmental Disabilities 

To increase the 

independence, productivity, 

inclusion, and integration of 

people with developmental

disabilities in their 

community 

Supports training and 

education of local service 

providers and policymakers 

on the needs of individuals 

with developmental 

disabilities 

Projects of National 

Significance 

To promote independence, 

productivity, inclusion, and 

community integration for 

people with developmental

disabilities 

Supports projects that seek 

to improve quality of life in 

the community for people 

with disabilities, such as 

projects that provide career 

development programs for 

people with developmental

disabilities 

State Protection and 

Advocacy Agencies 

To protect the legal and 

human rights of people with 

developmental disabilities 

Supports services that 

provide legal help for people 

with developmental 

disabilities and their families 

Source: GAO analysis of ACF documents. 

In addition, ACF supports the operation and administration of 65 

University Centers for Excellence in Developmental Disabilities 

Education, Research, and Service. The centers, which receive program 

funding from other sources, conduct research, disseminate information, 

and provide interdisciplinary training for medical residents, pediatricians, 

and other health care professionals on treating autism and other 

developmental disabilities. 

HRSA supports two programs to train professionals who work with people 

with developmental disabilities, including autism.

44 HRSA’s Leadership 

Education in Neurodevelopmental Disabilities program has 35 centers 

across the nation that focus on training professionals with a variety of 

professional backgrounds—such as psychologists, pediatricians, and 

speech-language pathologists—to improve health care for children with 

developmental disabilities. HRSA also supports the DevelopmentalBehavioral Pediatrics Training Program to enhance the behavioral, 

 44HRSA also supported the Quentin N. Burdick Program to address issues in rural health 

care. A goal of the Burdick Program was to train health professionals to deliver medical 

services to people with developmental disabilities, including autism. HRSA ended the

Burdick program in December 2005 because of budget constraints. 

Page 23 GAO-06-700 Federal Autism Activities
psychosocial, and developmental aspects of general pediatric care. The

program consists of 9 centers located in institutions of higher learning, 

which support fellows in behavioral pediatrics to help prepare them for 

leadership roles as teachers, researchers, and clinicians. 

CMS supports services to meet the needs of people with autism through 

Medicaid autism and developmental disability programs.45 These programs 

operate under CMS’s home and community-based services waivers that 

allow individuals who would otherwise need long-term care in nursing 

homes or other institutional settings to receive coverage for long-term care 

services in community settings. States determine the types of long-term 

care services they wish to offer under the waiver. For example, states with 

autism or developmental disabilities waiver programs may cover the costs

for specific disability-related services—such as speech therapy, 

occupational therapy, and respite care46—when those services are not 

otherwise covered under the state’s Medicaid program. States’ autism 

waiver programs generally offer the same services as their developmental 

disability waiver programs; the primary difference is that the autism 

waiver program may offer early intervention behavioral therapies targeted

to young children. According to CMS, as of April 2006, 44 states and the 

District of Columbia had developmental disability waiver programs, and 3 

states had autism waiver programs.47 In the 2 states operating both waiver

programs, a person eligible for the state’s autism waiver program could 

also be eligible for the state’s developmental disability waiver program. 

However, in these states, a person can receive services under only one 

waiver program at a time. 

 45Medicaid is a federal-state program that finances health care for certain low-income 

Americans. The Medicaid autism and developmental disability programs operate under 

Section 1915(c) of the Social Security Act, which authorizes CMS to waive certain Medicaid 

requirements, including (1) statewideness, which requires that services be available 

throughout the state; (2) comparability, which requires that all services be available to all 

eligible individuals; and (3) income and resource rules, which require states to use a single 

income and resource standard when determining eligibility for Medicaid, with the

exception of institutional care. A waiver of the last requirement allows states to exclude 

parental income when determining the income eligibility of children with autism and other 

developmental disabilities. 

46Respite care services are services provided to individuals unable to care for themselves

and are furnished on a short-term basis because of the absence of or need for relief for

those persons normally providing the care. 

47The states CMS reported to us as having waiver programs specific to autism are Indiana,

Maine, and Maryland. 

Page 24 GAO-06-700 Federal Autism Activities
Although Medicaid autism and developmental disability waiver programs 

support the provision of treatment services for people with autism, many 

people with autism may be unable to obtain services through these 

programs because they do not meet the programs’ eligibility rules or 

because states limit enrollment. To be eligible to receive services under 

the programs, a person would need long-term care in a nursing home or 

other institutional setting in the absence of the waiver. As a result, people 

at the higher functioning end of the autism spectrum, including people 

with Asperger syndrome, are generally not eligible to receive services 

under the waiver programs. Furthermore, states are allowed to cap the 

number of people who can enroll in these programs. In some states, 

enrollment waiting lists for the waiver programs are several years long. 

Because some autism interventions have been found to be effective only 

when applied by a certain early age, children with autism who remain on 

waiting lists for several years may exceed the eligible age range for the 

intervention before they can enroll in the waiver program. Officials in one

state told us the average length of time a person is on the waiting list for 

either its autism or developmental disability waiver program exceeds 

5 years. This state requires that a specific intensive one-on-one 

intervention be covered under its autism waiver program; however, state 

officials told us that in practice no child has ever received the service 

through the Medicaid waiver program. Because a child must receive the 

intervention by age six, and children are not usually diagnosed with autism 

until age three, by the time they come off the waiting list, they are no

longer eligible for the intervention. 

CMS has another waiver program that can assist people with autism and 

other disabilities. According to CMS, as of April 2006, 12 states were 

operating Independence Plus waiver programs.48 These waiver programs, 

which allow participant input, support services that teach skills, such as 

planning, budgeting, and decision making. The Independence Plus waiver 

programs also support home and community-based services—such as 

respite care and transportation—for people with disabilities, including 

developmental disabilities. 

 48States with Independence Plus waiver programs are Alabama, Connecticut, Delaware, 

Louisiana, Maryland, Mississippi, Montana, New Hampshire, North Carolina, North Dakota, 

Rhode Island, and South Carolina. 

Page 25 GAO-06-700 Federal Autism Activities
The primary vehicle for coordinating federal agencies’ autism activities is

the IACC. In accordance with the Children’s Health Act, NIH in 2001 

established the IACC to enhance effective collaboration within HHS and 

among other agencies conducting autism-related activities and to improve 

constructive dialogue with members of the public and interest groups. 

NIMH was designated the lead agency for the IACC, which includes 

representation from other NIH institutes, other HHS agencies,49 and 

Education. The IACC meets semiannually and has facilitated the exchange 

of information on autism activities among member agencies by providing a 

forum for federal agencies to share information on existing and planned 

autism-related activities and to obtain comments from participating 

agencies and the public. For example, CDC officials told us they shared 

information with the IACC from a series of listening sessions the agency 

conducted with parents, health care professionals, and others, because the 

concerns raised at the sessions touched on issues related to research or 

providing services that were outside of CDC’s purview. Officials from 

member agencies told us that the interagency committee has increased 

communication; improved planning; and helped agencies avoid duplicative 

research, such as on environmental risk factors for autism. 

Interagency Autism 

Coordinating 

Committee Enhances 

Communication 

among Federal 

Agencies, but 

Coordination Is 

Limited 

The IACC has enhanced federal coordination in the development of 

research priorities and of recommendations for improving service 

delivery. In 2003, the IACC produced a research matrix (see app. III), 

which NIH officials view as a comprehensive list of autism research goals.

NIH officials told us the agency’s institutes have used the matrix to guide 

their funding of autism-related activities and programs. For example, NIH 

has indicated that the focus of its planned Autism Centers of Excellence 

will relate to the research matrix goals of determining the causes of and 

best treatments for autism. NIH officials told us that the matrix is not a 

static document and that it will need to be updated to reflect goals that 

have been achieved and new priorities. HHS officials told us that a portion

of the IACC’s November 2006 meeting will be devoted to updating the 

matrix’s goals. 

In addition to focusing on research, the IACC has also supported efforts 

related to early identification and screening for autism and to the 

provision of services for people with autism. The IACC established a 

screening subcommittee to develop a screening campaign and work on 

 49The other HHS agencies participating in the IACC are ACF, Agency for Healthcare 

Research and Quality, CDC, CMS, Food and Drug Administration, HRSA, and SAMHSA. 

Page 26 GAO-06-700 Federal Autism Activities
ways to link families to referrals for services. One of the accomplishments 

of the subcommittee was CDC’s autism awareness campaign: “Learn the 

Signs. Act Early.” This campaign is aimed at encouraging awareness of 

early childhood development, including warning signs of autism and other 

developmental disabilities. Through the campaign, CDC disseminates 

information, provides educational materials, and supports online 

resources to inform parents and health care providers of the importance of 

early screening and intervention for children with autism and other 

developmental disabilities. In addition, because of its concern that 

services for people with autism are fragmented, poorly coordinated, and 

not always available, the IACC established a services subcommittee—

currently cochaired by officials from Education and the Autism Society of

America50—to consider the service needs of people with autism. The 

services subcommittee defined its mission as identifying the service needs 

of individuals with autism and their families, describing current federal 

efforts to meet those needs, identifying challenges to meeting those needs, 

and making recommendations for action. 

In July 2004, the services subcommittee convened a panel of autism 

experts to develop an action plan for enhancing existing service systems, 

expanding services for individuals with autism and their families, and 

coordinating services across systems. This document—the Autism 

Spectrum Disorders Roadmap—was presented to the IACC in May 2005. 

The roadmap provided a synthesis of issues and challenges related to 

serving people with autism and a set of performance measures and 

recommendations for improving services. A subcommittee member told us 

that the subcommittee’s vision was that each agency could begin to 

implement the recommendations without much difficulty. (See app. IV for

additional information on the roadmap.) 

The services subcommittee also presented a report to the IACC that 

identified agencies’ existing activities related to the recommendations in 

the roadmap. The report also identified recommendations that could be 

implemented in the short term and assigned lead responsibility to specific 

agencies for implementing them. Some agencies have begun to address the 

short-term recommendations. For example, in light of the goal of 

improving access to comprehensive information about autism services, the 

Agency for Healthcare Research and Quality is planning to develop a 

single autism Web site to consolidate all government information for 

 50The services subcommittee was initially cochaired by officials from HRSA and SAMHSA. 

Page 27 GAO-06-700 Federal Autism Activities
parents and service providers. An agency official told us that the agency is

exploring the possibility of linking information from Education and other 

agencies with HHS’s existing autism Web site.51 In addition, to respond to 

the recommendation related to identifying Medicaid waiver programs for 

people with autism, a CMS official told us that the agency is working on a 

report that will discuss promising practices supported by autism waiver 

programs in two states and expects to post the report on its promising 

practices Web site52 by September 2006. 

Although some federal agencies have begun to address some of the 

roadmap’s recommendations, the document lacks the specificity that 

would help a state or federal agency easily implement all of its findings. 

For example, the roadmap indicates there is a lack of adequately trained

autism providers, but does not specify which types of providers are 

needed. The roadmap also indicates there is a lack of understanding and 

communication regarding autism, but does not specify the type of training

and technical assistance professionals and families of people with autism 

need. 

While the IACC has created a forum for sharing information and 

identifying areas to pursue to improve research and services, officials told

us that there is limited coordination of federal agencies’ autism-related 

activities. For example, although officials from IACC member agencies 

told us about programs their agencies had under way related to autism, 

very few of those programs represented coordinated efforts across 

agencies. Officials from federal agencies and representatives of advocacy

associations told us that federal coordination is hindered because no 

agency on the IACC actively monitors federal agencies’ responses to 

recommendations to ensure that tasks are completed. In addition, because 

it is simply a coordinating body, the IACC does not have authority to 

ensure that agencies follow up on committee or subcommittee 

recommendations. Moreover, no federal agency perceives itself as having

lead responsibility for addressing the service needs of adults with autism 

or services for children beyond education. 

 51See http://www.hhs.gov/autism/. 

52See http://www.cms.hhs.gov/PromisingPractices/. 

Page 28 GAO-06-700 Federal Autism Activities
NIH and CDC have increased their funding to support autism activities and 

have pursued many avenues of research, including those specified in the 

Children’s Health Act and in the IACC’s research matrix. In addition to 

developing research goals for its member agencies, the IACC has provided 

a forum for federal agencies to inform each other and the public about 

their current autism activities and has recommended approaches for 

improving services for people with autism. However, coordination among

agencies in carrying out their autism activities remains limited. 

Furthermore, successful implementation of IACC research goals and 

services recommendations will depend on individual agencies taking the 

initiative to develop new programs or tailor existing ones and coordinating

with other public and private agencies as appropriate. This is especially

critical for improving the availability and delivery of services, because 

although ACF and Education have primary responsibility for federal 

programs that support education services for children with autism, no 

single agency has a lead role in supporting the delivery of other types of 

services for people with autism. 

The information on the characteristics and prevalence of autism being 

tracked through CDC’s surveillance activities could also help federal 

agencies better develop or tailor services for people with autism. However, 

the current limitation on CDC’s ability to use information in education 

records has presented challenges to the agency’s ability to report accurate

and complete data. Conducting autism surveillance and protecting the 

privacy of sensitive information in education records are both important 

goals. The Congress required HHS and Education to jointly develop a 

report describing the challenges to CDC’s obtaining education records for 

autism surveillance and identifying options for overcoming them. As of 

June 2006, HHS and Education had not completed this report, which could 

help the Congress determine how to accommodate both of these goals. 

Resolving the challenges facing CDC would facilitate continued progress 

toward identifying the characteristics and prevalence of autism. These 

efforts are essential for advancing knowledge about autism diagnosis, 

treatment, and services, which could help improve the lives of people with

autism and their families. 

We recommend that to ensure continued progress toward the 

development of accurate and comparable data on autism characteristics 

and prevalence and to provide the information the Congress required on 

CDC’s surveillance activities, the Secretary of Health and Human Services 

and the Secretary of Education work together to promptly identify options 

Conclusions 

Recommendation for 

Executive Action 

Page 29 GAO-06-700 Federal Autism Activities
for overcoming challenges to CDC’s ability to use education records for 

surveillance of autism. 

We provided a draft of this report to HHS and Education for comment. 

(HHS’s and Education’s comments are reprinted in appendixes V and VI, 

respectively.) In addition to general comments, HHS and Education also 

provided technical comments, and we revised our report to reflect the 

comments where appropriate. 

Agency Comments 

and Our Evaluation 

HHS and Education did not agree with the report’s recommendation. In its

comments, HHS said that the recommendation suggested that HHS and 

Education had not worked together to identify options that would enable

CDC to continue to obtain and use education records for autism 

surveillance. Although the draft report did not indicate that the 

departments had not worked together, we added a statement that HHS and

Education have had discussions about this issue. However, as of June 

2006, HHS and Education had not agreed on options or submitted the 

report due to the Congress in June 2005 describing these options, as 

required by the Birth Defects and Developmental Disabilities Prevention 

Act of 2003. Education expressed concern in its comments that the 

recommendation did not take into account the privacy protections 

provided by FERPA. We added language to the final report to

acknowledge that autism surveillance and protecting the privacy of 

information in education records are both important goals. We did not 

modify our recommendation because we continue to believe it is 

important for Education and HHS, consistent with the Birth Defects and 

Developmental Disabilities Prevention Act of 2003, to work together to 

promptly identify options for overcoming the challenges CDC faces in 

using education records so that the Congress can make an informed 

decision on how to accommodate both of these goals. 

Education’s comments included several points about the draft report’s 

treatment of FERPA’s privacy protections. Education said that protecting 

the privacy of sensitive information in education records should not be 

viewed as a challenge to overcome, but as an important public safeguard.

Our use of the word challenge does not negate the importance of 

protecting the privacy of education records. We have used this word 

because the Birth Defects and Developmental Disabilities Prevention Act

of 2003 specifically required Education and HHS to describe the 

challenges to CDC’s obtaining education records and identify methods for 

overcoming them. In its description of the act’s discussion of methods for 

overcoming these challenges, Education emphasized the methods related

Page 30 GAO-06-700 Federal Autism Activities
to increasing parental consent and said that this was the Congress’ 

primary concern. However, the act specifically instructed the departments 

to provide justifications for any recommendations to change existing 

statutory authority, including FERPA, indicating that the Congress 

contemplated possible changes to current privacy protections. 

Education stated that it is willing to discuss with CDC options related to 

CDC’s use of information in education records for autism surveillance. In

its response to the draft report’s discussion of CDC’s description of 

possible approaches that would allow it to continue using personally 

identifiable education records for surveillance, Education noted that 

FERPA does not permit schools to use a passive consent model for the 

disclosure of education records. We revised the report to clarify that 

passive consent systems are not authorized under FERPA. 

The draft report stated that Education sent letters to two states’ education 

agencies, in response to their inquiries, informing them of Education’s 

reinterpretation of FERPA, but had not communicated this change to 

other states’ education agencies. Education commented that this was 

inaccurate and said that it had posted these letters on its Web site and that 

it provides training on FERPA to education officials. We revised the report 

to reflect this information. 

Regarding the draft report’s discussion of services for children with 

autism, Education expressed concern that the draft report implied that 

there was a widespread problem of schools violating IDEA in their 

provision of services to children with disabilities, including autism. We did 

not intend to imply this, and we revised the report to emphasize that 

schools face challenges in providing such services. 

As arranged with your office, unless you publicly announce the contents of 

this report earlier, we plan no further distribution of it until 30 days after 

its issue date. At that time, we will send copies of this report to the 

Secretary of Health and Human Services, the Secretary of Education, the 

Director of the Centers for Disease Control and Prevention, the Director of 

the National Institutes of Health, the Administrator of the Centers for 

Medicare & Medicaid Services, the Administrator of the Health Resources 

and Services Administration, the Administrator of the Substance Abuse 

and Mental Health Services Administration, and other interested parties. 

We will also make copies available to others upon request. In addition, the 

report will be available at no charge on GAO’s Web site at 

http://www.gao.gov. 

Page 31 GAO-06-700 Federal Autism Activities
If you or your staff have any questions about this report, please contact me 

at (202) 512-7101 or bascettac@gao.gov. Contact points for our Offices 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 VII. 

Sincerely yours, 

Cynthia A. Bascetta 

Director, Health Care 

Page 32 GAO-06-700 Federal Autism Activities
Appendix I: Scope and Methodology Appendix I: Scope and Methodology 

To determine the autism-related activities and programs that the 

Department of Health and Human Services’ (HHS) National Institutes of 

Health (NIH) and Centers for Disease Control and Prevention (CDC) have 

under way, we collected documents from and interviewed agency officials 

about their fiscal year 2005 research and surveillance activities. To help 

confirm that we had a complete list of agencies’ programs, we compared 

the information agency officials gave us with programs in the online 

Catalog of Federal Domestic Assistance and the Computer Retrieval of 

Information on Scientific Projects. We identified in the Children’s Health 

Act of 2000 the specific autism-related mandates and authorizations for 

NIH and CDC and reviewed agency-provided lists of activities and 

interviewed agency officials to determine which activities the agencies had 

conducted to respond to the act. We also compared the agencies’ autismrelated programs to goals developed by the Interagency Autism 

Coordinating Committee (IACC). To determine NIH’s and CDC’s funding 

of activities related to autism, we asked agency officials to provide funding

for autism, by institute and center, for fiscal year 2000—one fiscal year 

before passage of the Children’s Health Act—through fiscal year 2005. The 

funding data we obtained generally represented obligated funds—funds 

the agencies had legally committed to spend but might not yet have 

expended. In addition, NIH’s data represent the agency’s estimated 

funding of autism research. We did not verify the accuracy of these data;

however, we interviewed agency officials knowledgeable about the data, 

and we determined that the data were sufficiently reliable for the purposes 

of this report. We relied primarily on agency-reported program 

descriptions and funding amounts; we did not independently verify the use 

of grant money by recipients and therefore could not determine any causal 

link between enactment of the Children’s Health Act and changes in 

funding for autism-related projects.

To identify the programs federal agencies have under way to support 

services for people with autism, we interviewed officials from other HHS 

agencies—the Administration for Children and Families, Agency for 

Healthcare Research and Quality, Centers for Medicare & Medicaid 

Services, Food and Drug Administration, Health Resources and Services 

Administration, Office on Disability, and Substance Abuse and Mental 

Health Services Administration. We also interviewed officials from the 

Environmental Protection Agency and the Department of Education’s 

Family Policy Compliance Office, Institute of Education Sciences, Office 

of Elementary and Secondary Education, and Office of Special Education 

and Rehabilitative Services. 

Page 33 GAO-06-700 Federal Autism Activities
Appendix I: Scope and Methodology 

To determine how federal departments and agencies coordinate their 

autism activities and programs, we reviewed minutes and reports of 

interagency meetings and interviewed federal agency officials. We also 

attended the November 2005 meeting of the IACC to observe how member 

agencies shared information and coordinated programs and activities. In 

addition, we interviewed federal agency officials on the challenges of and

potential areas for improvement in federal agencies’ coordination efforts. 

It was beyond the scope of this engagement to identify all federal 

programs that provide services to people with autism and all coordination

activities among federal agencies and departments. We focused on 

programs designed to meet the specific needs of people with autism or 

developmental disabilities or that have specific program goals targeted to

this population. It was also beyond our scope to evaluate the quality of the 

activities and programs we described. However, we reviewed the relevant

literature and interviewed experts in autism and representatives from 

several professional and advocacy associations to identify concerns about 

federal agencies’ current activities and coordination efforts and potential 

areas for improvement. Specifically, we interviewed officials from the 

American Academy of Pediatrics, American Psychiatric Association, 

American Speech-Language-Hearing Association, National Association of 

State Directors of Developmental Disabilities Services, National 

Association of State Directors of Special Education, and National 

Association of State Medicaid Directors. We also interviewed 

representatives from two advocacy associations that focus on autism 

research and representatives from two advocacy associations with a broad 

focus on autism research, services, and public awareness. We conducted

our work from August 2005 through July 2006 in accordance with 

generally accepted government auditing standards. 

Page 34 GAO-06-700 Federal Autism Activities
Appendix II: Selected NIH Autism-Related Appendix II: Selected NIH Autism-Related Activities 

Activities 

Activity Description

Autism Genetics Exchange Part of the National Institute of Mental Health’s Human Genetics Initiative that makes 

genetic resources and biomaterials available to autism researchers 

Brain and Tissue Bank for Developmental

Disorders 

Repositories at the University of Maryland at Baltimore and the University of Miami 

School of Medicine that collect, store, and distribute brains and other tissues for 

research dedicated to improving the knowledge, care, and treatment of people with 

developmental disorders, including autism 

Centers for Children’s Environmental Health 

and Disease Prevention Research 

A collaboration with the Environmental Protection Agency to examine the effect of 

environmental exposures on children’s health through a multidisciplinary research 

approach that includes basic, applied, and community-based research; 2 of the 

program’s 11 centers focus wholly or partly on environmental causes of autism 

Collaborative Programs of Excellence in Autism Network of nine programs in which investigators conduct basic and clinical research 

on the possible genetic, immunological, neurobiological, and environmental causes 

of autism and investigate the development of brain structures and their functions as 

they relate to autism 

High Risk/Baby Sibling Autism Research 

Project 

A multisite consortium designed to enhance research with populations of young 

children at high risk for autism, particularly the siblings of children with autism, with 

the goal of identifying behavioral and biological markers for autism; this consortium is 

a public-private collaboration between the National Institute of Child Health and 

Human Development and the National Alliance for Autism Research 

Identifying Autism Susceptibility Genes A request for applications that encouraged research to identify specific genes that 

relate to susceptibility to autism 

Intramural Program on Autism Research A program of clinical research on autism that will offer a multidisciplinary approach to 

the evaluation and treatment of children, adolescents, and adults with autism; the 

program was launched in the summer of 2005 

MRI Study of Normal Brain Development A longitudinal study to map the structural development of the brain by age and sex 

National Autism Brain Bank at Harvard A resource center that collects, stores, and disseminates postmortem human brain 

specimens for the study of autism 

National Database for Autism Research A collection of information systems supporting autism research activities that 

includes laboratory, clinical, and behavioral data 

Research on Autism and Autism Spectrum 

Disorders 

A program announcement that solicits research on various topics related to autism: 

diagnosis, epidemiology, etiology, genetics, treatment, and service delivery; high 

priority areas include clinical and applied research that may lead to the development 

of diagnostic research instruments, treatments, and intervention strategies 

Research Units on Pediatric 

Psychopharmacology and Psychosocial 

Interventions Network 

Five groups of investigators that are specifically funded to evaluate treatments for 

autism; several studies are examining various aspects of medication, including dose 

ranges, regimens, safety, and effect on cognition, behavior, and development 

Studies to Advance Autism Research and 

Treatment 

Eight centers of excellence designed to unite expertise, infrastructure, and resources 

for conducting research on causes, diagnosis, early detection, prevention, and 

treatment of autism 

Source: GAO analysis of NIH documents. 

Page 35 GAO-06-700 Federal Autism Activities
Appendix III: Interagency Autism 

Coordinating Committee Research Goals 

Area of research Goals 

Characteristics of autism Define and plan Autism Phenome Project and study existing data to begin to 

characterize the autism phenome 

Establish resources for genotype and phenotype studies (e.g., genetic repository) 

Develop nonbrain biomarkers (e.g., blood levels of specific molecules) to provide the 

biological characteristics of autism 

Implement multisite longitudinal study of subsequent pregnancies and infant siblings of 

children with autism to identify risk factors, broader phenotype, and early characteristics 

of autism 

Identify genes that increase susceptibility for autism and animal models of autism for 

further study of phenotypic characteristics of autism 

School- and community-based

interventions 

Expand, disseminate, and implement effective interventions, including transition 

services, to improve outcomes in school and community settings throughout a person 

with autism’s life span 

Develop, evaluate, implement, and disseminate innovative intervention strategies, 

including transition services, to improve outcomes in school and community settings 

throughout a person with autism’s life span 

Continue formulating, evaluating, and implementing appropriate and effective 

intervention strategies incorporating research-based findings to improve outcomes in 

school and community settings throughout the life span of a person with autism 

Ensure appropriate and effective interventions are widely recognized and broadly 

implemented in school and community settings throughout the life span of a person with 

autism 

Epidemiological studies Implement first-generation, intensive community-based prevalence studies with clinical 

evaluations; the studies will produce initial data for detecting changes in prevalence of 

autism 

Plan and implement second-generation intensive community-based prevalence studies 

with clinical evaluations 

Early intervention Develop a randomized clinical trial for evaluating the effectiveness of early behavioral 

interventions and factors predicting response to interventions

Implement a multisite, randomized clinical trial to identify moderators and effective 

components of early intervention treatments (e.g., dose, intensity, mode of delivery, age 

of onset) 

Develop intervention methods for infants and toddlers to lower the age for which there 

are effective interventions 

Implement longitudinal follow-up of early intervention randomized clinical trial 

Provide evidence that the symptoms associated with 25 percent of cases of autism can 

be secondarily prevented through early identification and early treatment 

Develop methods that allow 90 percent of people with autism to develop speech 

Appendix III: Interagency Autism 

Coordinating Committee Research Goals 

Page 36 GAO-06-700 Federal Autism Activities
Appendix III: Interagency Autism 

Coordinating Committee Research Goals 

Area of research Goals 

Specific treatments Improve outcome measures to enhance effectiveness in evaluating treatment studies 

Determine effectiveness of pharmacological, behavioral, and other treatments that target 

symptoms associated with autism 

Identify individual characteristics that predict response to behavioral, pharmacological, 

and other treatments 

Develop treatment algorithm for autism to provide guidance for practitioners and 

educators 

Develop effective drug treatments that target core symptoms of autism 

Neuroscience Establish infrastructure (e.g., enhanced brain acquisition) for neuropathological 

investigations to characterize morphological aspects of the pathophysiology of autism 

Develop technology and infrastructure for multisite imaging studies to identify the 

neuropathology of autism 

Characterize the neuropathology of autism to identify brain structures and functions 

associated with autism 

Characterize the developmental timeline for alterations in brain structures and 

connections in autism 

Define neural circuitry and neurochemistry for several functions impaired in autism 

Define basic, common neuropathological and neurochemical features of autism 

Screening Evaluate sensitivity and specificity of existing screening tools and continue developing 

effective screening measures

Develop research on implementing strategies for early identification of children with 

autism in community settings, using a population-based longitudinal cohort 

Identify biological markers, behavioral markers, or both to develop indices of risk for the 

development of autism in infants 

Develop feasible, sensitive autism screening method for young infants 

Other Develop local and national Research Communication Network to disseminate findings 

among researchers and the public to increase ongoing communication 

Develop twin resource to study heritability and environmental factors influencing autism 

Identify environmental factors (e.g., viruses, medications) that contribute to the 

development of autism and their associated developmental windows 

Identify genetic and nongenetic causes of autism and their interactions 

Source: GAO analysis of Interagency Autism Coordinating Committee Research Matrix, 2003. 

Page 37 GAO-06-700 Federal Autism Activities
Appendix IV: Interagency Autism

Coordinating Committee Services Roadmap 

Goals and Recommendations 

Goals Recommendations

All people with autism and their families will 

have a well-established, trusting, and 

mutually respectful relationship with a 

health care professional (medical home) 

who listens and responds to concerns and 

who acts as an equal partner in providing a 

clearly defined plan of coordinated 

services. 

Provide ongoing training and technical assistance for professionals and families to 

engage as full partners 

Increase autism information and education resource capacity at national and local levels

Integrate autism into existing initiatives to strengthen family support and involvement and 

to establish integrated systems of care 

There will be universal early identification of 

signs of autism, followed by appropriate 

referral to a coordinated and 

comprehensive service system. 

Support IACC Screening Subcommittee efforts to increase public awareness and 

incorporate autism into routine screening 

Develop guidelines for autism screening, diagnoses, and referral for follow-up 

Improve and standardize developmental and autism screening methodologies 

Incorporate autism guidelines into curriculum for residency, professional certification, and 

other training programs 

Promote linkages between medical homes and existing resource networks for 

developmental, educational, rehabilitative, social, and specialty services for autism 

Provide technical assistance and disseminate educational materials, checklists, and 

implementation tools for autism screening to families and professionals 

Individuals with autism and their families 

will have ready access to integrated and 

coordinated health, mental health, 

education, and social services provided by 

well qualified autism providers throughout 

the life span of individuals with autism. 

Promote use of autism practice guidelines to define standards of care in health, mental

health, social services, and education 

Incorporate autism service guidelines into curriculum for residency, professional 

certification, and other training

Provide incentives to ensure greater availability of well trained providers and a more 

equitable distribution of services across geographical areas 

Develop an action plan for collaboration at all levels to identify services and meet the 

service needs of persons with autism within the broader initiatives to develop communitybased systems of services for all persons with disabilities 

Community-based services will be 

organized so that individuals with autism 

and their families can use them easily. 

Support family-driven state and community development initiatives to implement creative 

and effective practices 

Provide technical assistance to states and communities to implement effective service 

delivery models

Provide a user-friendly Web-based resource for families and providers that includes 

information on autism (e.g., successful screening models, autism providers) 

Ensure that individualized plans of care coordinate a comprehensive continuum of 

services across all necessary service sectors and support people with autism throughout

their life span 

Identify and analyze effective models that organize, integrate, and deliver 

comprehensive services 

Develop models that allow providers and families to have systematic access to shared 

records and examples of exemplary practices 

Appendix IV: Interagency Autism 

Coordinating Committee Services Roadmap 

Goals and Recommendations 

Page 38 GAO-06-700 Federal Autism Activities
Appendix IV: Interagency Autism

Coordinating Committee Services Roadmap 

Goals and Recommendations 

Goals Recommendations

All individuals with autism will receive the 

services necessary to make transitions to 

all aspects of adult life, including health 

care, work, and independent living. 

Collect data about the life experiences and needs of adults with autism 

Start transition planning services early 

Develop and support skill-building opportunities that promote self-determination in youth 

with autism 

Provide an array of services and support in the community for individuals with varying

degrees of ability 

Incorporate aging issues—such as estate planning and long-term care—into transition 

planning 

Formalize federal partnerships to ensure collaboration across service sectors providing 

transition planning 

Establish an interagency federal task force that identifies the needs of adults with autism 

and determines how best to meet them 

Public and private financing of autismrelated services will be expanded and 

standardized so people with autism and 

their families have access to early and 

continuous screening; comprehensive 

diagnosis; and needed health care, mental 

health, education, and social services. 

Demonstrate the cost effectiveness of early intervention 

Expand health insurance benefits for autism, taking into account the need for a broad 

array of services 

Develop model financing, public and private insurance packages, and Medicaid waiver 

programs 

Conduct a national study of cost and insurance to determine policies and practices that 

affect financing, eligibility, and service delivery 

Develop innovative approaches, such as use of tax-exempt medical savings accounts 

and financial planning assistance, that blend funding from multiple sources to create a 

coordinated approach to financing services 

Source: GAO analysis of Autism Spectrum Disorders Roadmap.

Note: The IACC Services Subcommittee presented the roadmap to the full committee on 

May 16, 2005. 

Page 39 GAO-06-700 Federal Autism Activities
Appendix V: Comments from the Department Appendix V of Health and Human Services : Comments from the Department 

of Health and Human Services 

Page 40 GAO-06-700 Federal Autism Activities
Appendix VI: Comments from the Department Appendix VI: Comments from the of Education 

Department of Education 

Page 41 GAO-06-700 Federal Autism Activities
Appendix VI: Comments from the Department 

of Education 

Page 42 GAO-06-700 Federal Autism Activities
Appendix VI: Comments from the Department 

of Education 

Page 43 GAO-06-700 Federal Autism Activities
Appendix VI: Comments from the Department 

of Education 

Page 44 GAO-06-700 Federal Autism Activities
Appendix VII: 

A

GAO Contact and Staff 

cknowledgments 

Page 45 GAO-06-700

Appendix VII: GAO Contact and Staff 

Acknowledgments 

GAO Contact Cynthia A. Bascetta, (202) 512-7101 or bascettac@gao.gov

In addition to the contact named above, Helene F. Toiv, Assistant Director; 

Jennie Apter; Janina Austin; Julian Klazkin; Robert Lepore; and KaSandra 

Rogiérs made key contributions to this report. 

Federal Autism Activities

Acknowledgments 

(290481) 
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U.S. Government Accountability Office, 441 G Street NW, Room 7125 

Washington, D.C. 20548 

Paul Anderson, Managing Director, AndersonP1@gao.gov (202) 512-4800

U.S. Government Accountability Office, 441 G Street NW, Room 7149 

Washington, D.C. 20548 

Obtaining Copies of 

GAO Reports and 

Testimony

Order by Mail or Phone 

To Report Fraud,

Waste, and Abuse in 

Federal Programs 

Congressional 

Relations 

Public Affairs 

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