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EXAMINING THE FEDERAL RESPONSE TO AUTISM 

SPECTRUM DISORDERS 

HEARING 

BEFORE THE

SUBCOMMITTEE ON GOVERNMENT OPERATIONS 

OF THE

COMMITTEE ON OVERSIGHT 

AND GOVERNMENT REFORM 

HOUSE OF REPRESENTATIVES 

ONE HUNDRED THIRTEENTH CONGRESS 

SECOND SESSION 

MAY 20, 2014 

Serial No. 113–155 

Printed for the use of the Committee on Oversight and Government Reform 

( 

Available via the World Wide Web: http://www.fdsys.gov 

http://www.house.gov/reform 

(II) 

COMMITTEE ON OVERSIGHT AND GOVERNMENT REFORM 

DARRELL E. ISSA, California, Chairman 

JOHN L. MICA, Florida 

MICHAEL R. TURNER, Ohio 

JOHN J. DUNCAN, JR., Tennessee 

PATRICK T. MCHENRY, North Carolina 

JIM JORDAN, Ohio 

JASON CHAFFETZ, Utah 

TIM WALBERG, Michigan 

JAMES LANKFORD, Oklahoma 

JUSTIN AMASH, Michigan 

PAUL A. GOSAR, Arizona 

PATRICK MEEHAN, Pennsylvania 

SCOTT DESJARLAIS, Tennessee 

TREY GOWDY, South Carolina 

BLAKE FARENTHOLD, Texas 

DOC HASTINGS, Washington 

CYNTHIA M. LUMMIS, Wyoming 

ROB WOODALL, Georgia 

THOMAS MASSIE, Kentucky 

DOUG COLLINS, Georgia 

MARK MEADOWS, North Carolina 

KERRY L. BENTIVOLIO, Michigan 

RON DESANTIS, Florida 

ELIJAH E. CUMMINGS, Maryland, Ranking 

Minority Member 

CAROLYN B. MALONEY, New York 

ELEANOR HOLMES NORTON, District of 

Columbia 

JOHN F. TIERNEY, Massachusetts 

WM. LACY CLAY, Missouri 

STEPHEN F. LYNCH, Massachusetts 

JIM COOPER, Tennessee 

GERALD E. CONNOLLY, Virginia 

JACKIE SPEIER, California 

MATTHEW A. CARTWRIGHT, Pennsylvania 

TAMMY DUCKWORTH, Illinois 

ROBIN L. KELLY, Illinois 

DANNY K. DAVIS, Illinois 

PETER WELCH, Vermont 

TONY CARDENAS, California 

STEVEN A. HORSFORD, Nevada 

MICHELLE LUJAN GRISHAM, New Mexico 

Vacancy 

LAWRENCE J. BRADY, Staff Director 

JOHN D. CUADERES, Deputy Staff Director 

STEPHEN CASTOR, General Counsel 

LINDA A. GOOD, Chief Clerk 

DAVID RAPALLO, Minority Staff Director 

SUBCOMMITTEE ON GOVERNMENT OPERATIONS

JOHN L. MICA, Florida, Chairman 

TIM WALBERG, Michigan 

MICHAEL R. TURNER, Ohio 

JUSTIN AMASH, Michigan 

THOMAS MASSIE, Kentucky 

MARK MEADOWS, North Carolina 

GERALD E. CONNOLLY, Virginia Ranking 

Minority Member 

JIM COOPER, Tennessee 

MARK POCAN, Wisconsin 

(III) 

C O N T E N T S 

Page 

Hearing held on May 20, 2014 ............................................................................... 1 

WITNESSES 

Mr. Thomas R. Insel, M.D., Director, National Institute of Mental Health, 

Chair, Interagency Autism Coordinating Committee 

Oral Statement ................................................................................................. 7 

Written Statement ............................................................................................ 10 

Mr. Michael K. Yudin, Acting Assistant Secretary, Office of Special Education 

and Rehabilitative Services (OSERS), U.S. Department of Education 

Oral Statement ................................................................................................. 24 

Written Statement ............................................................................................ 27 

Ms. Marcia Crosse, Ph.D., Director, Health Care, U.S. Government Accountability Office 

Oral Statement ................................................................................................. 34 

Written Statement ............................................................................................ 36 

APPENDIX 

Statement of Rep. Gerald E. Connolly ................................................................... 00 

Federal Autism Activies .......................................................................................... 76 

Statement of Donald J. Mueller, Executive Director ............................................ 79 

Statement for the record by Safeminds, submitted by Mr. Mica ......................... 82 

Responses for the record by Michael Yudin .......................................................... 88 

Responses for the record by Dr. Thomas Insel ...................................................... 92 

Responses for the record by Dr. Marcia Crosse .................................................... 106 

Statement by Autism Speaks ................................................................................. 109 

(1) 

EXAMINING THE FEDERAL RESPONSE TO 

AUTISM SPECTRUM DISORDERS 

Tuesday, May 20, 2014 

HOUSE OF REPRESENTATIVES, SUBCOMMITTEE ON GOVERNMENT OPERATIONS, COMMITTEE ON OVERSIGHT AND GOVERNMENT REFORM, Washington, D.C. 

The subcommittee met, pursuant to call, at 9:07 a.m., in Room 

2247, Rayburn House Office Building, Hon. John Mica [chairman 

of the subcommittee] presiding. 

Present: Representatives Mica, Turner, Amash, Woodall and 

Connolly. 

Also present: Representative Posey. 

Staff Present: Will L. Boyington, Deputy Press Secretary; Molly 

Boyl, Deputy General Counsel and Parliamentarian; Adam P. 

Fromm, Director of Member Services and Committee Operations; 

Linda Good, Chief Clerk; Mark D. Marin, Deputy Staff Director for 

Oversight; Emily Martin, Counsel; Sarah Vance, Assistant Clerk; 

Jeff Wease, Chief Information Officer; Jaron Bourke, Minority Director of Administration; Courtney Cochran, Minority Press Secretary; Katie Teleky, Minority Staff Assistant; Cecelia Thoms, Minority Counsel; and Michael Wilkins, Minority Staff Assistant. 

Mr. MICA. Good morning. I would like to call to order the Subcommittee on Government Operations. Welcome everyone this 

morning, a beautiful day in Washington. 

Welcome to my colleague, our ranking member, Mr. Connolly, 

and we will have the introduction of Mr. Posey, and acceptance of 

him into the committee’s proceedings today. 

Mr. CONNOLLY. Mr. Chairman, just before you begin your statement, if you wouldn’t mind, I would ask unanimous consent that 

our colleague from Florida, Mr. Posey, be allowed to participate in 

today’s hearing. 

Mr. MICA. Without objection, so ordered. 

Mr. CONNOLLY. I thank the chair. 

Mr. MICA. Thank you. 

Well, again, I would like to welcome everyone. The order of business will be opening statements by Members, and we have I see 

three witnesses this morning. We go to our panel of witnesses after 

we have heard from the Members. We will hear from our three witnesses. 

And welcome to them this morning. 

And then we will go into questions. 

So that will be the order of business, and the title of today’s 

hearing is Examining the Federal Response to autism spectrum 

2 

disorders. And this is a hearing that the chairman, Mr. Issa had 

also committed to conduct, and we are pleased to cooperate in conducting today’s important hearing. 

First of all, I always have an opening statement about the purpose of the committee, and we do have important work. We are the 

chief investigative and oversight panel in the House of Representatives and probably in the Congress, and it is an important responsibility. When you are home, like we were last week, there are people working hard, making a living trying to feed their families, 

keep up with all of the responsibilities that they have as citizens, 

and they send us here to make certain that government is efficient, 

effective, and it works for them. 

Today is a particularly important hearing because it deals with 

the affliction that many families have had to experience, unfortunately, with their children, autism, and it has impacted dramatically their lives, and we will hear in just a few minutes some of 

the questions that are being raised right now about Federal response and Federal programs. So it is important that we, in fact, 

review what is going on with these programs, especially the Federal aspects and their impact, again, on the issue of autism, a problem that so many families and children face. 

So, again, thank you for coming, and as I said, the hearing is 

going to try to focus on the government’s response and also to the 

rise in the diagnosis of autism spectrum disorders, or ASD. We will 

hear from some distinguished witnesses who hopefully can shed 

light on, again, the Federal perspective that we are centering and 

focusing our attention on today. 

In March, the Center for Disease Control and Prevention, CDC, 

they issued a report that estimates that now 1 in 68 children in 

the United States has been identified with ASD. This estimate is 

roughly 30 percent higher than CDC’s estimate from 2 years ago, 

which showed ASD in 1 in 88 children. ASD causes, of course, some 

very significant financial burdens for diagnosed individuals and 

their families. Individuals with autism on average spend $4,110 to 

$6,220 more on medical expenditures every year than individuals 

without ASD. In 2011, the additional cost of having a child with 

ASD was estimated to be $17,000—more than $17,000 a year. In 

the United States, spending on autism costs $126 billion every 

year, including associated costs for health care, education, intervention services, as well as wages lost by parents who sometimes 

have to quit their jobs to care for their children. 

The Federal Government also spends money on autism, and that 

is one of the things we are going to review today. In fiscal year 

2012, Congress appropriated—not a huge sum but significant 

money—$230 million for autism-specific research and services. This 

includes $161 million for research for the National Institutes of 

Health; $21 million for CDC surveillance and research efforts; and 

some $48 million for Health Resources and Services Administration 

within HHS; and another $5 million for autism research within the 

Department of Defense’s congressionally directed medical research 

program. 

Of course, the Federal Government has an important responsibility, and that is to ensure that these funds are spent both effectively and also efficiently. In 2006, Congress established the InterVerDate Aug 31 2005 12:47 Dec 19, 2014 Jkt 000000 PO 00000 Frm 00006 Fmt 6633 Sfmt 6633 C:\DOCS\91799.TXT APRIL
3 

agency Autism Coordinating Committee, IACC. That agency and 

committee coordinates all efforts within the Department of Health 

and Human Services and other Federal agencies regarding autismrelated research. And it was formed, as I understand it, to make 

certain that efforts are coordinated and that we have the most effective possible programs. 

The IACC’s mission is to provide advice on Federal activities related to ASD, also to facilitate the exchange of information and coordination of ASD activities and increase public understanding of 

ASD research and services. 

However, and I think that, Gerry—Mr. Connolly—you may recall 

when we had the Government Accountability Office in recently, 

and they went over a list of some of the major issues, and problems 

with various agencies. In their GAO report to us in November, they 

stated there was a potential duplication in 84 percent of the autism 

research projects funded by Federal agencies and that better coordination was needed from the IACC, which was actually set up 

for that purpose. That is a pretty astounding figure, and we want 

to review that, and that is one of the reasons for the hearing today. 

So the IACC and other agencies have disputed some of GAO’s 

findings, noting that research projects with similar titles may have 

substantially different hypotheses, and the growth of scientific 

knowledge depends on multiple studies that investigate similar research questions at the same time. As I said, we are going to examine, again, some of the points of view on this report. The recently 

introduced Combating Autism Reauthorization Act of 2014 would 

change the law to provide coordination between agencies, first by 

appointing a point person at HHS to coordinate research efforts 

within HHS; secondly, to require agencies to implement IACC’s 

strategic plan; and then, thirdly, adding, preventing duplication to 

IACC’s list of statutory responsibilities. 

So, today, we are going to look at ways to ensure that the potential duplication of research efforts does not become actual duplication. We are going to look at all of the associated testimony that 

will be provided today and see if we can make some sense out of 

this and make certain that we are heading in the right manner, 

again, efficient and effective use of taxpayer dollars in this important area. We will also take the opportunity to explore how the 

Federal Government responds to the evolving needs of individuals 

with ASD within the health care and public school systems. 

So we have got a number of areas we want to cover today, and 

we will hear from now from the ranking member, Mr. Connolly. 

Please to yield to him. 

Mr. CONNOLLY. Thank you so much, Mr. Chairman. 

And thanks for holding today’s hearing to examine the Federal 

Government’s response to autism spectrum disorders, ASD, with a 

particular focus on strengthening the Interagency Autism Coordinating Committee efforts to coordinate and monitor Federal ASD 

research initiatives and treatment activities. 

I know I have been involved for the last 20 years in my community in Northern Virginia with parents of autistic kids and with 

various support groups. I know that one of the things that plagued 

autism families dealing with this challenge was the fact that some 

insurers, in fact, treated the autism as a preexisting condition. And 

4 

the good news is the Affordable Care Act made that illegal, lifting 

that burden from parents who were already dealing with many 

other challenges. 

On behalf of the millions of Americans and their families living 

with ASD, I know it is your hope and mine, Mr. Chairman, and our 

expectation that our expert panel of witnesses will engage in a productive discussion this morning aimed at identifying shared principles around which stakeholders can coalesce and build on to ensure Federal ASD activities are carried out in the most efficient 

and effective manner possible. 

The Centers for Disease Control and Prevention estimated, as 

you indicated, Mr. Chairman, that as many as 1 in 68 kids in the 

United States are living with ASD. That is clearly a serious public 

health challenge, as millions of individuals battle daily with symptoms that vary greatly in severity and scope but often involve impaired social interactions, problems with verbal and nonverbal communication, and repetitive behaviors. According to the CDC, it is 

estimated, as you indicated, Mr. Chairman, to cost perhaps as 

much as $17,000 more per year to care for a child with ASD compared to a child without it. And of course, those costs arise in the 

form of medical and nonmedical expenses ranging from medicines, 

therapies, and special education, to caregiver time and adult housing. 

A recent National Institutes of Health study concluded the economic burden associated with ASD is substantial and can be measured across multiple sectors of our society and calculated that the 

total societal cost for caring for children with ASD exceeded $9 billion as of 2011. 

In passing the Combating Autism Act of 2006 and subsequently 

reauthorizing that act in 2011, the Congress began to address the 

rising rate of ASD and established the IACC to coordinate all efforts within the Department of Health and Human Services concerning ASD. Creating the IACC was an important first step in ensuring that the Federal response responsibly leverages taxpayer 

dollars to engage in a systematic and comprehensive approach to 

watch over research and treatment activities across government, 

academia, and the private sector. 

I am concerned, as you are, Mr. Chairman, that the Federal Advisory Committee Congress established to coordinate ASD activities 

according to the GAO, is relying on data that is outdated, not 

tracked over time, inconsistent and incomplete, and risks duplication of research efforts as you cited, Mr. Chairman. 

Of course, we also must recognize that GAO only addressed potential duplication of Federal ASD activities. So this panel is going 

to be important in terms of hearing testimony about what actually 

is occurring. As GAO has consistently stated in these reports, determining actual duplication for research projects would require a 

more extensive review of voluminous and scientific data and was 

beyond the scope of the study. HHS makes a fair point in noting 

that duplication in and of itself, is not necessarily a negative characteristic with respect to effectively conducting scientific research 

activities. 

I look forward to learning more about the IACC plans to enhance 

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cally, I hope we will examine how all stakeholders work together 

to improve the quality of the IACC data, to enhance coordination 

and monitoring of Federal autism activities, and how the Departments of Defense, Education, HHS, and National Science Foundation will better coordinate ASD research activities to ensure that 

we get the most bang for our buck from finite taxpayer resources. 

As the GAO will testify today, I expect, researchers have yet to 

identify the root causes of autism, and there are no known cures. 

Thus it is absolutely vital that we sustain our Nation’s robust commitment to funding Federal research that may enhance our knowledge of this condition and improve treatment options for families 

coping with ASD. If there is one singular principle that we can all 

embrace, surely, it is that no family or child should be forced to 

face living with ASD alone, particularly when we know that early 

detection and intervention can make a dramatic difference in the 

quality of life for an individual living with ASD. 

I look forward to hearing about how we can improve the efficiency, effectiveness of our Federal response, and I want to thank 

our witnesses for being with us today. 

Thank you, again, Mr. Chairman, I yield back. 

Mr. MICA. Thank you, and we don’t have any other members at 

this point, but members may have 7 days to submit opening statements for the record. 

We do have Mr. Posey, who, if he would like, can be recognized 

at this time. 

Mr. POSEY. Thank you very much, Mr. Chairman, it was very 

kind of you. 

I would like to enter into the record, if I might be able to at this 

time, from SafeMinds. It’s an organization of people who are affected by autism, and it’s testimony submitted for the record on the 

Committee on Oversight and Government Reform, Subcommittee 

on Government Operations hearing of May 20, 2014. 

Mr. MICA. Without objection, that will be made a part of record. 

You may proceed. 

Mr. POSEY. Thank you. 

Thank you, Mr. Chairman, as you know, and you have expressed 

interest in before, Representative Carolyn Maloney and I introduced H.R. 1757, the Vaccine Safety Act, which calls for the National Institutes of Health to conduct a comprehensive study comparing the health outcomes, including the incidence of autism spectrum disorders between individuals who are vaccinated and those 

who are unvaccinated. It was announced previously during the 

April 8th, 2014, Interagency Autism Coordinating Committee meeting that a study of vaccinated versus unvaccinated children is 

being undertaken under an existing NIH contract with The Lewin 

Group. While I appreciate that a study is being undertaken, I think 

it is imperative that it be a little bit more transparent and that the 

stakeholders should have more participation and input into the 

process. 

It’s important that all data sets developed as a part of this study 

at each step in the process be preserved for independent review in 

the future. I came across a May 15th op ed by Sallie Bernard. Sallie is a board member of Autism Speaks and the president of 

SafeMinds, but more than that, she is the mother of a 26-year-old, 

6 

Bill, who has autism, and let me quote from her op ed: ‘‘Now a new 

study of over 2 million children born in Sweden between 1986 and 

2006, which has been published in the Journal of the American 

Medical Association, confirms what SafeMinds and parents have 

been saying for decades. Children are as much at risk of getting 

autism from environmental factors as they are from their genetics. 

The study by Sven Sandin and his colleagues follows on the heels 

of another landmark study of twins by Joachim Hallmayer of Stanford published in 2011, which showed the larger component of autism risk arise from environmental, not heredity factors. 

‘‘Since genes and environment interact to increase autism risk, 

this means that we are doing something to our children, exposing 

them to something harmful either while they are still in utero or 

during their first months or years of life that is altering their biology. The scientific evidence is overwhelming. Researchers and 

science policymakers can no longer deny that there is a clear and 

strong environmental component to the skyrocketing rates of autism. 

‘‘By ignoring the environmental component to autism, the government and scientific community have made a massive strategic 

error, wasting enormous amounts of money and time and mostly 

fruitless genetics-only research that has not helped us stop the new 

causes of autism or help people living with severe autism.’’ 

And this is a quote: ‘‘We can fix this. The study by Sven Sandin 

and Joachim Hallmayer can guide us to the end of the autism epidemic. The good news is that the environmental causes of neurological disorders are more easily fixed than genetics. When we invest in uncovering the environmental factors that are causing our 

autism spectrum disorders, we can remove those factors from our 

world. We can study how those factors alter biology and identify 

the treatments that can remediate those pathways.’’ 

‘‘Based on this latest evidence, funders like NIH should be charging scientists with the urgent task of discovering what the environmental causes of autism are. Clinging to outdated paradigms 

harms our community. To its credit, the NIH’s National Institute 

of Environmental Health Sciences just released a Request for Proposals on environmental contributors to autism spectrum disorders.’’ To its discredit—‘‘the NIH’s Interagency Autism Coordinating Committee, continues to obstruct environmental initiatives 

contained in its own strategic plan for autism spectrum research,’’ 

and I left out mentioning any names in there. 

This is all pretty serious, and when I listen to what others are 

telling me and what the GAO report says, that we will discuss 

today, and the data from the May 7th JAMA article, the message 

is clear. It appears NIH has been ignoring what parents have 

known for many years: Environmental exposures in utero or early 

life are changing the biology of children, and I’m out of words and 

out of time so I will pick this up later. Thank you, Mr. Chairman. 

Mr. MICA. Well, I thank you for your participation, your opening 

statement. 

And now, without further opening statements, we will turn to 

and recognize our panel. 

Today, we have Dr. Thomas R. Insel. He is the director of the 

National Institute of Mental Health, and the chair of the InterVerDate Aug 31 2005 12:47 Dec 19, 2014 Jkt 000000 PO 00000 Frm 00010 Fmt 6633 Sfmt 6633 C:\DOCS\91799.TXT APRIL
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agency Autism Coordinating Committee. We also have Mr. Michael 

Yudin, and he is the acting assistant secretary for the Department 

of Education’s Office of Special Education and Rehabilitative Services. And then, finally, we have Ms. Marcia Crosse, and she is the 

health care director for the U.S. Government Accountability Office. 

As you all know, this is an investigative committee of Congress, 

and subcommittee, Government Operations Subcommittee you are 

testifying before. We do swear in our witnesses so if you will please 

stand. 

Raise your right hand. Do you solemnly swear or affirm that the 

testimony you are about to give before this subcommittee of Congress is the whole truth and nothing but the truth? 

Dr. INSEL. I do. 

Mr. YUDIN. I do. 

Ms. CROSSE. I do. 

Mr. MICA. And the record will reflect that all three witnesses answered in the affirmative. 

Again, welcome to each of you. We have sort of an SOP, standard 

operating procedure, 5 minutes for your presentation. If you have 

lengthy testimony or data that you would like entered into the 

record, do so through request of the chair. 

And we are pleased, again, to welcome and recognize first, Thomas Insel, and he is, as I said, the director of the National Institute 

of Mental Health, and the chair of the Interagency Autism Coordinating Committee. 

Welcome, sir, and you are recognized. 

WITNESS STATEMENTS 

STATEMENT OF THOMAS R. INSEL, M.D. 

Dr. INSEL. Thank you, Chairman Mica, and Ranking Member 

Connolly, it is a pleasure to be here. And I appreciate your interest 

in this very important public health issue. 

As you just noted, I have two hats here as head of the NIMH, 

which is the largest Federal funder for autism research, and as 

chair of the IACC, a job that I have had since 2002, so through 

many different iterations of the Combating Autism Act. 

You have my testimony. I’m not going to read that. And I hope 

we can discuss much of what is in there, and I really, in the spirit 

of wanting to make this more of a conversation and hopefully create a teachable moment here, I would rather save time for questions and answers rather than taking a lot of time with an opening 

statement. 

I would like to make a few comments, which probably are not 

going to be as apparent in the course of our conversation today. 

One is just to give you a sense of how remarkably fast things are 

moving in the realm of autism science. Last week was the 13th 

meeting of the International Society for Autism Research. Really, 

prior to 13 years ago, there was no annual meeting. There was no 

society. It was a very small research field. Last week, there were 

2,000 people from 35 countries gathered together in Atlanta to talk 

about the most recent findings, which is a 30 percent increase in 

the number of abstracts just in 1 year. So we have got a field that 

is vibrant. That is exciting. That people are moving into. 

8 

But they are also, of course, huge questions. You talked already 

both of you about the issues around prevalence, and that is a concern that we see broadly. You also both mentioned costs. 

And it is interesting, your figures were somewhat variant. I think Mr. Connolly said $9 billion, and Chairman Mica, you cited 

$128 billion. The truth is probably somewhere in between, but it 

is a lot of money. And the question I think in front of us is when 

you have a cost that great and a need this urgent, how much do 

you invest in science to preempt those costs and to mitigate that 

public health burden? And that’s what I hope we will have a 

chance to talk about a little bit today. It is not only how we invest, 

and where we invest, but ultimately, how much should be invested? 

What should we be spending on a problem that has grown so much 

and is creating so much concern in your districts and across the 

country? 

For us at the NIH, the good news is that the science is moving 

so quickly, and there are so many interesting new insights. It is 

actually at a point now where we believe very firmly that the kind 

of investments we are making will soon begin to mitigate these 

staggering costs and reduce the disability of this disorder. A lot of 

the science that we are most excited about actually does not have 

autism in the title. It is the science of trying to understand how 

the brain develops, developing technologies that allow you to actually visualize brain development even at the molecular level, beginning to see how the brain connects and the role of both genetics 

and experience and how that happens across both prenatal and 

postnatal life. 

Just in the last year, we have seen just—well, what I would call 

breakthrough technologies like CLARITY that give you the first 

transparent brain with the ability to look at three-dimensional 

neuroanatomy. We have got the imaging techniques that are giving 

us the most complete architecture of the developing brain. So this 

is really an extraordinary time. It is also extraordinary for the 

power of genomics, which is revolutionizing every area of medicine. 

Last—about 3 months ago, the American College of Medical Genetics and Genomics summarized where we are for autism. They concluded that, ‘‘Using current knowledge and technology, a thorough 

clinical genetics evaluation of patients with ASD is estimated to result in an identified etiology in 30 to 40 percent of individuals.’’ 

That’s up from about 5 percent only 5 years ago. So there is incredible progress. 

The good news is that both neuroscience and genomics together 

are actually helping us to begin to pinpoint where the environment 

must be taking its toll. And all of the evidence right now points to 

mid-gestation, second trimester. What the culprit is or the culprits, 

we still don’t know. But it is because of those kinds of technologies 

and those kinds of approaches, just as any other area of medicine, 

we are getting those insights. 

Just two other points to make before I finish. One is that there 

are some things unique to the autism field that I think really are 

helpful here. One is NDAR, National Database for Autism Research. It is a massive effort. We don’t really have this in almost 

any other area except in parts of the cancer field. NDAR collects 

the data from over 70,000 subjects. Virtually every subject who is 

9 

enrolled in an NIH-funded research project, those data are standardized through a data dictionary and shared through the database 

so that they can be interrogated much more broadly by a wide community. Only in the last couple of months, we have seen the first 

fruits of that with people analyzing all of the imaging data from 

many of the different sources and coming up with some new insights. It is very exciting. 

The last thing is the IACC, which is what we are here to talk 

about, and I will just leave my comments for later, but I think in 

spite of your concerns around whether this committee has done everything that it set out to do, there are some remarkable achievements, as was pointed out by your colleagues just 2 or 3 years ago, 

in another hearing in which this was used as a model of what could 

happen in other disease areas where we want to be able to coordinate research better. We have done that in the IACC. We have created some remarkable strategic efforts to show where the science 

should go, what we can do, and we have monitored that with great 

detail. So if you can find a better example, I would love to see it 

in the whole realm of biomedical research. But as far as I know 

and I have been involved with many, many different areas in my 

tenure at NIH, there is nothing quite like this. So I am delighted 

to answer your questions, talk more about each of these issues, but 

I did want to give you a sense of the excitement that we see from 

the scientific perspective. 

Mr. MICA. Thank you, Dr. Insel. 

[The statement of Dr. Insel follows:] 

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Mr. MICA. We will get back to questions, but we are going to recognize next Mr. Michael Yudin, and he is the acting assistant secretary for the Department of Education’s Office of Special Education and Rehabilitative Services. 

Welcome sir, and you are recognized. 

STATEMENT OF MICHAEL K. YUDIN 

Mr. YUDIN. Great. Thank you, good morning Chairman Mica, 

Ranking Member Connolly, Mr. Posey, members of the subcommittee. I appreciate the opportunity to speak with you today 

about the role of the Department of Education in providing supports and services to individuals with autism spectrum disorder. 

The Department supports a wide range of activities in improving 

our knowledge of ASD, methods of instruction, vocational rehabilitation services, and the skills and qualifications of educators and 

service providers to ensure that individuals with autism, as well as 

all individuals with disabilities, enjoy equal opportunity, full community participation, independent living, and economic self-sufficiency. 

The Department’s primary role in supporting services to individuals with autism is through our funding administration and monitoring of the Individuals With Disabilities Education Act, or IDEA. 

When Congress reauthorized IDEA in 2004, it explicitly included 

autism in the definition of a child with a disability. My goal is to 

give you some more information about the kinds of autism supports 

and services that we are providing students and their families, to 

teachers, and the broader community under the provisions of 

IDEA. 

So, as you know, IDEA serves a very broad range of disabilities 

and severity in order to ensure that their needs are met and that 

children are indeed successful. All children with disabilities receiving services under IDEA have an Individualized Education Program, or an IEP, which is developed by a team of stakeholders 

which must include the student’s parents. 

More than 30 years of research shows us that students with disabilities do better when they are held to high expectations and 

have access to the general curriculum. Today, a majority of students with disabilities spend most of their time in regular education settings. Therefore, we must ensure that both general education, general educators and special educators have the proper 

training and tools to provide evidence-based instruction so that students with disabilities have the opportunity to succeed in the general curriculum. IEPs must identify the necessary supports, accommodations, and related services for particular students with disabilities to succeed in the general curriculum, including speech, 

psychological or counseling services, occupational behavioral therapy, or the school health services that are particularly important 

to students with autism. 

For older students, IEPs will also include transition services to 

ensure they are prepared for life after high school. It is particularly 

important to have students themselves participate in this transition planning, and to learn the self-advocacy skills that are necessary for students once they leave high school to fully participate, 

25 

meaningfully participate in their communities, enjoy competitive 

and gainful integrated employment. 

For our youngest children, part C of IDEA, provides support for 

screening and early intervention services for children from birth 

through age 2 who have or may have disabilities or delays. 

Mr. Connolly, you noted earlier that early screening is absolutely 

critical to early identification, and access to services and supports 

which can enhance children’s learning and development, minimize 

developmental delays, and result in more positive outcomes in 

school and in life. 

The Department also supports children with autism through the 

training of teachers, and related service personnel, providing support for technology development, assisting schools, districts, and 

States to identify, adapt, and sustain effective school-wide positive 

behavior interventions and supports, and helping parents and families access the necessary information and the tools to support their 

children’s education. 

The Department also plays a role in supporting adults with significant disabilities, including ASD, through the Vocational Rehabilitation Program. Through this program, State VR agencies, vocational rehabilitation agencies, provide a wide range of services designed to help persons with disabilities prepare for and engage in 

competitive integrated employment. Importantly, 35 percent of VR 

consumers of VOC rehab consumers are youth with disabilities. So, 

accordingly, the VR program works with schools to provide youth 

with critical transition services to ensure that they have the education and the skills to be successful in postsecondary education 

and employment. We know that individuals with ASD who participate in VR programs can be successful and enjoy higher rates of 

employment. 

As I wrap up my testimony, I want to briefly mention our research efforts around autism. It is important to note that our research entities do not conduct biomedical or medical research. 

First, the Institute of Educational Sciences supports research on 

the development, implementation, and evaluation of interventions 

that are intended to improve education outcomes for students with 

ASD. We know that there are communication and social deficits associated with ASD, but we also know that kids do better in these 

areas when they have access to nondisabled peer models. Projects 

include interventions that target social and communication skill 

impairments that are core functions—that are core features of 

ASD; transition support for children entering preschool and for 

adolescents leaving high school; assistance for families and teachers working with children with ASD; and the development and 

testing of technology applications to support learning of students 

with autism. 

And second, the National Institute on Disability and Rehab Research, otherwise known as NIDRR, supports research and related 

activities that generate new knowledge and promote its effective 

use to improve the outcomes of people with disabilities in the areas 

of community living, employment, and health, and functioning. 

Thank you so much for the opportunity to testify today. I’m happy 

to take any questions that you have. 

Mr. MICA. Thank you, and we will get to them shortly. 

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Mr. MICA. We will now recognize Marcia Crosse, and she is the 

health care director for the U.S. Government Accountability Office. 

Welcome and you are recognized. 

STATEMENT OF MARCIA CROSSE, PH.D. 

Ms. CROSSE. Thank you, Chairman Michael—Mica, Ranking 

Member Connolly, Mr. Posey, and members of the subcommittee. 

I’m pleased to be here today as you examine the Federal Government’s response to autism spectrum disorders. My remarks today 

are based on GAO’s November 2013 report on Federal autism activities and reflect information we included in our April 2014 report 

on overlap and duplication in Federal programs. And I request that 

my full written statement be entered into the record. 

Mr. MICA. Without objection, so ordered. 

Ms. CROSSE. Thank you. From fiscal year 2008 through 2012, 12 Federal agencies awarded at least $1.4 billion to support autism research and other autism-related activities. Funding multiple studies in the same research area can be appropriate and necessary, for 

example, for purposes of replicating or corroborating prior research 

results. And multiple agencies can provide a variety of expertise. 

However, the involvement of multiple agencies can also make it 

challenging to identify gaps and efficiently allocate resources across 

the Federal Government. 

The Combating Autism Act directed the Interagency Autism Coordinating Committee, or IACC, to coordinate HHS autism activities and monitor all Federal autism activities. The Combating Autism Act also required the IACC to develop and annually update 

a strategic plan for autism research. This plan is organized into 7 

research areas that encompass a total of 78 specific objectives. 

We identified over 1,200 autism research projects funded by Federal agencies in the 5-year period we examined. We found that 84 

percent of these projects had the potential to be duplicative because 

they focused on the same objectives in IACC’s strategic plan as 

other projects. That is, each of the agencies funded research in 

areas that were also funded by other agencies. For example, for one 

of the 78 research objectives, there were five agencies funding 20 

separate autism research projects. Having multiple projects related 

to one objective does not necessarily mean that there is duplication. 

However, given that all of the projects on an objective share a common purpose, this raises the possibility that one or more projects 

were duplicative. 

The IACC performs a valuable role in monitoring Federal autism 

activities and coordinating the activities sponsored by HHS. However, we believe that the IACC and Federal agencies may have 

missed opportunities to coordinate and reduce the risk of duplicating efforts and resources. We found that the IACC was hindered 

by limitations in the data it had collected. The data were outdated, 

inconsistent, incomplete, and not tracked over time. Our analysis 

across multiple years found that some objectives had more autism 

research projects funded than were suggested in the strategic plan, 

whereas other objectives were not funded by any agency, raising 

the potential for unrecognized gaps. 

In our November report, we recommended that HHS improve 

IACC data to enhance coordination and monitoring. HHS disagreed 

35 

and stated its efforts were already adequate. However, we note 

that the updated strategic plan that IACC released last month includes multiyear data on research projects and funding which we 

believe will assist the committee. 

Lastly, we found that, apart from Federal agencies’ participation 

in the IACC, there were limited instances of agency coordination 

and monitoring. Some agencies lacked formal policies or procedures 

for checking research funded by other agencies or for identifying if 

agencies were funding similar projects led by different investigators. We recommended in our November report that the agencies 

improve their coordination. The agencies supported improved coordination, but most disputed that duplication occurs. We agree 

that more information on the specific projects funded within each 

objective would need to be assessed in order to determine actual 

duplication. However, neither the agencies nor the IACC has undertaken such a review. 

In summary, we continue to believe the recommendations we 

have made are warranted and actions are needed. As established 

in GAO’s recent duplication work, it is important for agencies that 

fund research on topics of common interest, such as autism, to 

monitor each other’s activities to minimize the potential for the inefficient use of Federal resources. 

Mr. Chairman, this completes my prepared remarks. I would be 

happy to respond to any questions you or members of the subcommittee may have. 

[The statement of Ms. Crosse follows:] 

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Mr. MICA. Well, we will start right in. 

I guess Mr.—Dr. Insel, Ms. Crosse gave a pretty critical review 

of efforts to eliminate duplication. She said there had been some 

steps taken, but in fact, that data was incomplete, out of date. 

There have been some improvements. Do you want to take a 

minute and respond generally to her comments? 

Dr. INSEL. Well, you know, I think the general comment for me, 

it is a little ironic because one of the last hearings I was at on the 

Senate side, I sat with Senator Shelby and he wondered why we 

weren’t doing more to replicate the science that NIH supports. 

There is a real concern because of recent reports that not enough 

replication has been done, particularly on the basic science that is 

funded by the Federal Government. And so the NIH generally, 

under Dr. Collins, has taken on an increasing rigor, increasing replication campaign. And so our goal very much is to increase, not 

decrease duplication. We want to make sure that more people are 

working on the same problems, that we are bringing all of that 

data together, and that we can ensure that any findings, such as 

the recent finding about the disorganization in the cortex that was 

found in children who had died with autism, so it was a postmortem study, badly needs to be replicated. We just need to have 

someone else trying to do almost precisely the same study with 

other material to find out whether that, in fact, can be replicated. 

In a world in which, to my mind, this is all hands on deck, we 

need to have 10 times as many people working here across several 

agencies, I think being concerned about duplication, being concerned—thinking of that as the problem is just chasing the wrong 

rabbit down the wrong hole. That is not the issue right now. I can’t 

imagine, actually, a less relevant problem to the issues that we are 

all facing. We know so little about this disorder. The key now is, 

how do you get the fuel into this engine with all of these excited 

scientists, fantastic technologies we have to get this done, and to 

get some answers? And if Congress comes forward and says, You 

know, you are doing too many experiments, or too many people are 

working on this. We don’t know if it is being done in the right way. 

We don’t know if everybody is maybe doing the same experiment 

in two different places as if that’s a problem, when we are telling 

you is, in science, that a precisely what we need. We need more 

people working on the same problems and, to the extent possible, 

using exactly the same techniques to see if we get the same answers. 

Mr. MICA. Well, again, GAO is highly critical. They said we have 

had 1,200 of these projects in 5 years. It doesn’t appear that your 

agency has sorted out—well, also, the Interagency Autism Coordinating Council has not, and one of the reasons it was formed was 

to avoid duplication of effort, try to make certain that the dollars 

are spent. If it is similar research, and it’s—that in fact, it is justified, but the last criticism you had that you still have not undertaken, duplicative review process, which would sort out any of the 

repetitive studies that you are saying are so important. How do you 

respond to that last comment that was made? 

Dr. INSEL. So it’s a great question, and I think it’s really thinking 

about keeping in mind what a coordinating committee does for us, 

and you could see our strategic plan where we have gone through 

54 

this extensive monitoring, as GAO has noted. This is about strategy. It is about high-level planning and figuring out where the priorities should be. Questions about whether funding could be duplicated, how that funding gets distributed, these are tactical questions, and we have an entire staff, not on the IACC. There is a 

whole program staff. I have 65 in my own institute. That is their 

job. So for every grant that comes in, they go deeply into, has this 

been funded before? Is this person being funded by someone else 

to do the same work? Is there a possibility here that this is redundant and doesn’t need to be taken on? So it is a question that gets 

answered, but not through the IACC. That’s not part of the charge, 

nor is it in the coordinating committee that would even have access 

to the kind of data that you would need, which is pre-award data, 

so the IACC has a good view of what has been funded. 

The question you are bringing up, and what I think GAO is concerned about, is a tactical question about, how do you ensure before 

you fund the next grant, what we would call pre-award state, that 

something doesn’t, in fact, get awarded that isn’t necessary. So we 

have an entire process for that. HHS responded in their response 

back to GAO that the reason we don’t need to get the IACC to do 

this is we already have a large staff doing this. 

One other question that just in terms of the response, as was 

pointed out, out of the 78 objectives, there were 4 that actually 

never got funded by any agency; 74 did and were met to a greater 

or lesser extent. And it may interest you to know that one of those 

four was actually a recommendation from the IACC that the agencies develop a way to ensure replication research, that we actually 

find a mechanism to ensure that the agencies are supporting identical research across agencies to get replication or, as you might 

call it, duplication. That was never funded because we couldn’t figure out a way to get anybody to actually support that. But it, 

again, runs exactly counter to what you are seeing as the problem, 

we are seeing as an essential need. I can’t put it in any starker 

terms than that. 

Mr. MICA. Well, you also alluded to the kinds of investments 

being made, and then you cited two specific areas where you saw 

that there were either—well, first of all, you said how vital brain 

research is. Obviously, it is important, and then a couple of breakthroughs in genomics—is that the proper pronunciation? And then 

neuroscience, would be the two areas I think you identified as 

some—getting some promising results. Is that correct? The most 

promising? 

Dr. INSEL. That’s correct. 

Mr. MICA. Okay, and you spend about $161 million for research. 

There’s other aspects of this, some NIH, $21 million for CDC surveillance and research efforts, that’s a little different. Then we get 

to the HHS folks. They do research on occasion, and other things. 

Dr. INSEL. Department of Ed. 

Mr. MICA. Pardon? 

Dr. INSEL. Department of Education. 

Mr. MICA. Department of Education, I’m sorry. But again, to the 

pure science, and the two most promising areas of the $161 million, 

how much is going into those two areas? 

55 

Dr. INSEL. Well, I would have to actually take a moment to look 

up specifically what those numbers would be for autism. 

Mr. MICA. Half, 20 percent, 10 percent. 

Dr. INSEL. Probably around half would be going into that additional funding for interventions, development for biomarkers, for a 

whole range of other clinical kinds of studies that NIH supports. 

Mr. MICA. Well, my dad used to say, it is not how much you 

spend; it is how you spend it. And again, we are not in the position 

of evaluating science or the research that is conducted. We are getting a critical report and fairly pointed from GAO. Did you want 

to respond to anything, Ms. Crosse? 

Ms. CROSSE. I would like to respond, thank you. We have certainly no objection to duplication that is undertaken knowingly and 

intentionally in order to replicate or validate research results. 

That is not what we were seeing. We were seeing, not just within 

an agency, but across agencies because there were always at least 

four different agencies funding research in each one of these areas, 

that there was not the kind of coordination that we think is essential to ensure that in this very important area funds are not being 

wasted on efforts that have already been undertaken by other 

agencies, and perhaps in a more rigorous manner. 

For example, the National Science Foundation, when we first 

went to them, denied that they were funding any autism research. 

They are not a member of the IACC, and their information had not 

been included in previous strategic reports from the IACC. However, it was very simple for us to identify over 30 projects focused 

on autism that NSF was funding. They were not engaged in coordination with NIH, with the Department of Education, with HRSA. 

Mr. MICA. I don’t mean to interrupt, but did they have authority 

as the coordinating—under their coordinating charter to look at 

and also determine whether there is duplication? 

Ms. CROSSE. They certainly have authority to obtain information. 

The IACC is charged with coordinating all autism activities across 

the Federal Government to gather information on all activities. 

Mr. MICA. They didn’t look at NSF? 

Ms. CROSSE. Not in the earlier years we examined. In the subsequent years, at the time that we were undertaking our work, the 

IACC was beginning to contact them and in their more recent report has included information on the National Science Foundation. 

Mr. MICA. So that is improving. But it gets back to your last 

point, which was that they were not conducting duplicative review 

overall within—and that should be one of the primary purposes of 

the IACC, right? 

Ms. CROSSE. Well, we believe that since they have been charged 

with coordinating and obtaining information on all activities, that 

that should include all of the agencies that are conducting research. And you know, that was a primary example, but I think 

that, you know, to indicate that there is no room for improvement, 

I think it is not valid. We certainly found room for improvement. 

We are not— we are not making the charge that they are not doing 

anything. 

Mr. MICA. I don’t want to put words in your mouth, but you said 

that some of this has turned around since you undertook your reVerDate Aug 31 2005 12:47 Dec 19, 2014 Jkt 000000 PO 00000 Frm 00059 Fmt 6633 Sfmt 6633 C:\DOCS\91799.TXT APRIL
56 

view, and since we have had a report in November and then to 

Congress in April. 

Ms. CROSSE. We see some improvement. However—— 

Mr. MICA. It is still—— 

Ms. CROSSE. We still believe there is room for improvement. 

Mr. MICA. Do you want to respond, Doctor? 

Dr. INSEL. I would love to find somebody who does it better. I 

would just like to see the example. I think it is really helpful to 

put all of this in some context. And the reason why I keep harping 

on the—this being the wrong rabbit going down the wrong hole, is 

that when you compare autism to AIDS, it is really quite extraordinary. So as you said, Chairman Mica, that $160 million is being 

spent in 2012. It is a little bit more than that. But that is basically 

the autism figures, and you also, both of you cited the enormous 

public health cost and economic cost. AIDS affects about a million 

people in the United States. Do you want to guess what the AIDS’ 

budget is for research at the NIH? It is $3 billion. We are talking 

about $160 million for a disorder that affects at least as many children as are affected by—as are affected with AIDS in the entire 

country. 

Mr. MICA. Well, the question here is—I don’t mean to interrupt— you have got 12 agencies now identified with $1.4 billion over 4 

years. Is that the correct amount? 

Ms. CROSSE. Yes, Chairman Mica, that’s the amount. 

Mr. MICA. We are trying to make certain that—again, you have 

a pretty critical report, not, again, maybe most recently, within the 

last 12 months or so, but—— 

Dr. INSEL. Let me contest that a little and push back. You know, 

I think the report says there is a potential for duplication in 84 

percent of the research, and they looked at over 1,000 examples. I 

actually, couldn’t find a single example where there was true duplication. It is a little bit like if I said, on your subcommittee, there 

is a potential for corruption. That’s a sort of, you know, presumptive, pejorative comment, without actually any evidence to the fact 

that here is an example where something was wasteful. 

Mr. MICA. Well, and let me go to Ms. Crosse, and then we will 

get to Mr. Connolly afterwards. 

Mr. CONNOLLY. By the way, I’m sure Dr. Insel just meant with 

the exception of those present. 

Dr. INSEL. Absolutely, absolutely. Those present are not considered either in a pejorative or a presumptive way to be guilty as 

charged. But this is the problem with the terminology of saying 

‘‘potential,’’ because it suggests that there is a problem when people 

looked and actually haven’t found it. 

Mr. MICA. But I think she is saying a potential and identified 

specifically the NSF, and then you wanted to respond. 

Ms. CROSSE. Well, we did find some instances, but we were not, 

let’s be clear, we were not looking for actual duplication. We did 

not undertake the kind of detailed review of the scientific 

hypotheses, of populations being studied, and the methods being 

used for each and every one of over 1,200 studies. That was not our 

charge, and that is not what we undertook. We were looking to see, 

as has all of GAO’s recent work on overlap and duplication and 

fragmentation in Federal Government programs, to see whether or 

57 

not multiple agencies are undertaking similar work on similar populations. And we found that to be the case. 

We did have brought to our attention, a small number of actual 

duplications that was—studies that were occurring, but that’s because individuals in those agencies volunteered those to us. Our— 

so to say that we looked and didn’t find it is—didn’t find it is inaccurate. We were not undertaking the kind of review that we believe 

the agencies should be responsible for doing when they are putting 

out Federal dollars. 

Mr. MICA. Well, I have gone over my time. The whole purpose 

of this hearing, again, is to look at the critical report and see what 

we think is going on, and then try to make certain that there are 

corrections in the programs. 

Let me yield right now to Mr. Connolly. 

Mr. CONNOLLY. Thank you, Mr. Chairman. 

And this is going to be a spirited conversation. That is great. 

Ms. Crosse, let me begin with you. Is your expertise scientific research? 

Ms. CROSSE. I am not trained as a scientist. I’m a social scientist. 

Mr. CONNOLLY. So you are familiar with the scientific method? 

Ms. CROSSE. I am. 

Mr. CONNOLLY. Have you looked at Federal research dollars in 

comparable audits on breast cancer? 

Ms. CROSSE. I have not. 

Mr. CONNOLLY. AIDS? 

Ms. CROSSE. No. 

Mr. CONNOLLY. Prostate cancer? 

Ms. CROSSE. No. We have not been requested to do such work. 

Mr. CONNOLLY. I am not asking that question, Ms. Crosse. I am 

asking about your experience. 

Ms. CROSSE. No, we have not. 

Mr. CONNOLLY. So you don’t have any basis other than this, apparently, for this whole idea of duplication? 

Ms. CROSSE. I have a basis for how GAO examines duplication 

across Federal programs. I do not have similar—— 

Mr. CONNOLLY. Ma’am, you don’t have—ma’am, you do not have 

any basis, based on what you just said to me and your experience, 

and this audit, to claim that you come here with expertise on duplication of research allowing you to opine whether this particular set 

of research, in fact, stands out because there’s 84 percent of 1,200 

projects at risk of duplication. That is a pretty explosive charge, 

whether you want to admit it or not, that plays right into the narrative in this body that taxpayer dollars are just constantly being 

wasted. 

And when you say that, GAO, you risk legitimate scientific research that can affect people’s lives. And that is a very heavy burden when you come here and assert what you assert based on virtually nothing. 

It is okay to say there is room for improvement. There is a risk 

of inefficiency. That is true. And we want to explore that. But to 

go much beyond that is what Dr. Insel is objecting to. And I think 

he has a point, based on the expertise you don’t bring to this table. 

Ms. CROSSE. Sir—— 

Mr. CONNOLLY. Yes. 

58 

Ms. CROSSE. — I believe that what we did say is there is room 

for improvement. There is the potential for duplication. 

Mr. CONNOLLY. I am very well aware of what you said. I heard 

your testimony, and it was repeated by Dr. Insel, and it was repeated by the chairman. And what you are doing is playing into 

the hands of those up here, whether you intend to or not, who actually want to cut back on Federal resources because all Federal 

spending is bad. The Federal Government can’t do anything well. 

And so what you are putting at risk with that kind of statement 

is legitimate research. 

Now, maybe there’s duplication. Let’s examine that. Is duplication, per se, bad? I thought I heard you say in your testimony not 

necessarily. 

Ms. CROSSE. I said that if it’s undertaken intentionally, with the 

purpose—— 

Mr. CONNOLLY. Oh, it has to be intentional? 

Ms. CROSSE. Well, I think if duplication is occurring without 

knowledge that it’s occurring, and without an examination of 

whether or not the results that are achieved are similar or different, then you haven’t advanced the science. It is just happening. 

And it is not—it is not being recognized. I think that is a different 

situation. And that’s one that I would be concerned about. 

Mr. CONNOLLY. Well, okay. I seem to recall that some very key 

scientific research sometimes happens even accidentally, through 

mistakes. I seem to recall a mold that produced antibiotics. I think 

if GAO were around at that time, you would have criticized them 

for having a messy lab. And you would have been right. But scientific research isn’t always a pure, pristine, clean, nonduplicative 

process. And there may be lots of different reasons for giving similar research grants to see what they come up with, because your 

lab may be different than his lab. Your approach may be different. 

You may have a slightly different angle that actually leads to dramatically different results. That’s how science sometimes works. 

And sometimes it is a dead end. And when you look back at it 

retroactively, you go, What a waste of money. But they didn’t know 

at the beginning, and the effort was an honest one to begin with. 

Now, there may be some research that is, you know, frankly, not 

particularly legitimate, and who knows why they got the grant and 

so forth. But in terms of the scientific endeavor, given the mission 

we have here, you know, I think Dr. Insel’s point is let a thousand 

flowers bloom. In this case, let 1,200 flowers bloom. The risk of inefficiency has to be outweighed with the potential for discovery, for 

dramatic breakthroughs, not only in detection, but in treatment. 

And so it’s a risk weighing kind of thing, the scientific method. And 

it doesn’t always lend itself neatly to green eyeshade audits, Ms. 

Crosse. 

Ms. CROSSE. Mr. Connolly, we did not make recommendations for 

any cuts in Federal funding. We made recommendations for improvement and a more thoughtful and knowledgeable approach to 

managing the research enterprise across a range of agencies that 

are working in the same area. 

Mr. CONNOLLY. Ms. Crosse, I accept that. 

And I hope Dr. Insel accepts that as a helpful, broad generalization of good management. But you went beyond that. There is 

59 

something almost insidious in suggesting that 84 percent of 1,200 

research projects over a 5-year period are at risk of duplication. 

That goes far beyond recommending good management principles. 

That insinuates that there is something there though we haven’t 

cited it. And that’s Dr. Insel’s point. And all right, you didn’t look 

at it. But that is sort of an indictment hanging out there by implication. And I accuse you, I accuse the GAO of being irresponsible 

when you do that. That is not helpful to scientific endeavor, and 

it actually damages a very important research component of the 

Federal Government that’s very small compared to other diseases. 

Because one of the problems we have, Dr. Insel made the point, 

you know, frankly sometimes up here, why do research dollars go 

to particular conditions or illnesses? Frankly, lobbying. It’s not 

based on the prioritization of who suffers from it or, you know, how 

pervasive it is, or even a careful cost-benefit analysis. It’s often 

based on public pressure. And that’s how democracy works. But in 

this case, we are talking about a very small amount of Federal research dollars. And it seems to me the real issue here is actually 

getting more resources to this scientific endeavor, not fewer. 

But I repeat, I think it is irresponsible of GAO to make that kind 

of statement. The first statement is fine. The second one is insidious. And I don’t think you have the qualifications, quite frankly, 

to make that kind of statement. 

Ms. CROSSE. Mr. Connolly, I respectfully disagree. I believe our 

statement was pointing out the portion of the research where there 

is room for examination. 

Mr. CONNOLLY. No, ma’am, you said 84 percent of 1,200 research 

projects are at risk of duplication. 

Ms. CROSSE. Have the potential. 

Mr. CONNOLLY. Based on what? 

Ms. CROSSE. Because they are—— 

Mr. CONNOLLY. You didn’t look at them. You didn’t come up with 

a conclusion that we looked at this, this, this, this, compared it, 

and it’s quite clear there is rampant duplication and inefficiency, 

and you didn’t need to do it that way. You didn’t come to that conclusion. 

Ms. CROSSE. Because 84 percent of the projects are overlapping 

across agencies, that was the basis for our conclusion. 

Mr. CONNOLLY. Does that mean they are not coordinating? 

Ms. CROSSE. We found room for improvement in coordination. 

Mr. CONNOLLY. Well, okay. There is always room for improvement, even at GAO, Ms. Crosse. 

Ms. CROSSE. Yes, sir. 

Mr. CONNOLLY. But the only example I thought I heard you say 

here today was NSF, because it’s outside the penumbra of the 

IACC, and it was doing its own thing. 

Ms. CROSSE. That’s not the only instance where we believe improvements in coordination could occur. We think that that was a 

clear—the clearest example. 

Mr. CONNOLLY. Okay. Give us another one. 

Ms. CROSSE. We thought—for example, we found frequent meetings between HRSA and CDC to discuss their research proposal 

and excellent coordination. However, AHRQ did not take HRSA’s 

60 

advice that the work they were funding was duplicative with work 

HRSA had already funded. That was an example. 

Mr. CONNOLLY. Did you conclude, based on your examination, 

that taxpayer dollars were wasted? 

Ms. Crosse. We did not. 

Mr. CONNOLLY. Thank you. 

Dr. Insel, you want to talk a little bit about the scientific method? And are you concerned at the implied duplication and overlap 

that might mean that dollars—that there is an opportunity cost, 

that dollars could have been better focused or targeted but weren’t? 

I guess that’s what we are supposed to conclude from this broad 

generalization from the GAO. 

Dr. INSEL. Well, I am going to rise to defend Ms. Crosse a little 

bit, because after all, her organization—— 

Mr. CONNOLLY. This isn’t personal, Ms. Crosse, but it’s about—— 

Ms. CROSSE. I understand. 

Mr. CONNOLLY. Listen, I have been working on and off up here 

since 1979. And GAO is a wonderful organization, does great work. 

But there are times when GAO can’t see the forest for the trees because they bring a green eyeshade approach to something, forgetting the mission, and not bringing in expertise—they can’t to every 

endeavor—but they need to be a little more humble about that 

sometimes in their methodology. And in this particular case, I am 

bothered, I am really bothered by this report, because I think it can 

do real damage in the current climate up here. It plays right into 

the hands of the wrong narrative: So we are wasting dollars; we 

don’t need to be investing more. Not that that’s GAO’s intention. 

But even GAO can try now and then to avoid being politically tone 

deaf in a context, especially when something as important as autistic research is at stake. That’s my point. 

Dr. Insel, sorry. 

Dr. INSEL. I am not sure I have anything to add, Mr. Connolly. 

Mr. CONNOLLY. I was asking you the previous question, and you 

decided to defend Ms. Crosse, and I was telling you you didn’t need 

to. But maybe we can return to the subject at hand, which is, are 

you worried, though—I mean does she make a point, does the GAO 

make a point that there is duplication that worries you, overlap 

that worries you, lack of coordination that worries you because it’s 

diverting really precious resources that could have been better targeted? Are there examples in your mind as the head of the IACC? 

Dr. INSEL. I have a long list of worries, but none of them are on 

it, none of the things you just mentioned. 

Mr. CONNOLLY. Why not? 

Dr. INSEL. Because there are so many more pressing problems 

that we are facing. Again, I go back to the fact that we know so 

little about this disorder. We know the prevalence is increasing, as 

both of you have said. And really, this issue is to me a complete 

side bar. This is not a place to focus. 

Mr. CONNOLLY. Okay. But put yourself in the position, for a 

minute, of a lay person who sincerely may be concerned and share 

your concern about let’s try to get to the heart of this, and better 

understand it, and to be able to develop more effective interventions and, ultimately, hopefully, prevention even. And I hear a report that 84 percent of your 1,200 projects over 5 years are at risk 

61 

or potential duplication. That doesn’t concern the head of the 

IACC, that some of those projects may in fact be duplicative? Because that’s the implication. 

Dr. INSEL. As I said at the outset, I am looking for duplication. 

That is what I think is actually essential to the scientific process. 

But that is not to say that there aren’t ways we can do things 

better. The IACC is not perfect. We are always looking for input 

from outside groups. I would say that this particular investigation, 

because that’s what it was over a period of I believe 2 or 3 years, 

at some point began to actually interfere with the very thing we 

were trying to do. My own staff, I at one point asked them how 

much time is this taking? And this ran into hundreds of hours, 20 

or more meetings. I mean, it is just an extraordinary burden for 

people looking for something that, ultimately, frankly, they never 

found. And what you have is a report that ends up saying there 

is a potential for duplication. 

Mr. CONNOLLY. And I will add, but I mean, is it not true that, 

sadly, a lot of scientific research, especially in the medical field, 

ends up at dead ends with the best of intentions? 

Dr. INSEL. That’s the way science works. If you knew the answer, 

you wouldn’t have to do the experiment. 

Mr. CONNOLLY. Thank you. 

Thank you, Mr. Chairman. 

Mr. MICA. Well, just to state for the record Mr. Connolly consumed 13 minutes. And I consumed about 10 and a half. I just 

want to add a couple of things here, and I will count it against 

time. Then we will go to Mr. Woodall. 

Mr. Woodall, we are doubling the time for members on the panel. 

And then we will get to Mr. Posey next. Let me just say a couple 

of things clarifying. First, I asked the question if this was just— 

if this was a report—I am not that familiar with all of the history 

of this issue. But the study was actually mandated by a public law, 

111–139. It wasn’t a request of Members. Is that correct? 

Ms. CROSSE. The report that we issued in April, where we included information on our November report, was mandated by law. 

But our original report issued in November was requested. It was 

requested by Senators Coburn, Ron Johnson, Mike Lee, and Robert 

Menendez. 

Mr. MICA. Okay. 

Ms. CROSSE. And it was at their initiative that we undertook 

this. 

Mr. MICA. I just wanted to get the genesis of the study that 

was—that you were requested to do. That’s the first thing. Secondly, I don’t want anyone to think that this hearing was organized 

or its purpose is to cut funding for autism. If there was wasteful 

money or something uncovered and that was an issue—I think 

what we wanted to do, again, I was startled by the April—no, April 

of this year, yes, and the 2013 report. So when an agency makes 

a statement like that, that does get her attention. So that’s part 

of the purpose of the hearing. And if we aren’t spending money 

where we are getting the most results, and there was an agency 

set up in 2006 to try to better coordinate those efforts, then we 

may have issues. And that’s why we are doing this hearing. We 

want every dollar to be as effective as possible. My side of the aisle, 

62 

too, Mr. Connolly, we have put—Mr. Gingrich, when we took over, 

we doubled, almost doubled some of the money for research. And 

I am one of the individuals who feels that you can’t—if it is properly applied and you are doing the research, then look at the billions you could save, the agony, the heartache for these families 

and these individuals that are affected. So I just want the record 

to clearly reflect this isn’t any attempt to cut funds, or to, again, 

do away with research that is needed. So, with that, let me—— 

Mr. CONNOLLY. And Mr. Chairman? 

Mr. MICA. Yeah. 

Mr. CONNOLLY. Can I just point out for the record that my friend 

has now matched, if not exceeded, my time. 

Mr. MICA. That is exactly what I intended to do. You are not 

going to get an extra minute out of me. 

Mr. CONNOLLY. You have always been fair. Thank you. 

Mr. MICA. I always try to be fair. I learned from my first year 

in Congress from a Democrat Member who treated me with fairness and equality, that I would repeat it even if it required me to 

buy Preparation H. 

Mr. CONNOLLY. And it is also important to note that the chairman’s brother was a wonderful Democratic Member this of this 

body from Florida. 

Mr. MICA. We all have our issues. 

Mr. Woodall, you are recognized. 

Mr. WOODALL. Thank you, Mr. Chairman. 

I appreciate the time. And I appreciate you pointing out that this 

is not a hearing about reducing autism funding; this is a hearing 

about making sure that every penny counts. I don’t know who represents an area that is not full of moms and dads who want answers and want to make sure that every penny is being spent effectively. 

And candidly, to Mr. Connolly’s point, Dr. Crosse, when you have 

explosive things that come out in a report, I would argue that that 

GAO report has done more to focus the discussion on autism research and whether or not there are enough dollars there or not 

as anything. I have not seen the negative undercurrent. I have 

seen the very positive persuasion. But more importantly, whether 

doing your work and reaching your conclusions helps the autism 

research cause or hurts the autism research cause, GAO is not 

tasked with sorting that out. 

GAO is tasked with sorting out the answer to the question that 

in this case four Senators asked and a law mandated. And I hope 

that the takeaway will never be that if there is a political point 

that you can make that you should make it, or if there is an end 

that you can justify, you should justify it. We rely on GAO to share 

the good and the bad and the ugly. And I am grateful to you all 

for the work that you do. 

To that end, thinking about those hundreds of hours that you all 

invested, Dr. Insel, I kind of think of that as the price of admission. 

I always hate to see dollars wasted on compliance. That is something that we fight on a regular basis in my part of the world. But 

when you are talking about $1.4 billion over a series of years, folks 

do want some accountability. And folks at home don’t understand 

why DOD is working on part of this issue, and DOE is working on 

63 

part of this issue, and NIH is working on part of this issue. Understanding that accountability is a part of what we all do, using this 

as the model, Dr. Crosse has been criticized for making an observation but not recommending solutions. You made an observation 

about the time involved. Is there a solution to that? 

Dr. INSEL. It is essential that people, when they have a question, 

look at the evidence. I wouldn’t contest that for a moment. 

But what I would contest is the importance of looking at all the 

evidence. Parts of the report are simply inaccurate or incomplete. 

There has been an enormous work on looking at the accountability 

within the autism research funding stream. So we have this recent 

report, which is really an accountability report of our strategic plan 

that looks at every single objective, finds out how much was spent 

over every year, where the money has gone, how does that map 

onto what was planned. So none of that, by the way—all of that 

was available last year. It has only recently been published, but 

GAO saw that. This was presented at the public meetings that the 

IACC held. Somehow that failed to make it into the report. 

Mr. WOODALL. Well, my experience is, and yours may be similar, 

the report Congress does on its own success generally turned out 

pretty good. Turns out we think pretty highly of the work that we 

do. The work that outside groups do on our success sometimes 

don’t come back quite as optimistic. I look at that report, it looks 

like it was prepared in-house. Is there a similar document that you 

would hold out as the be all, end all of outside examination of the 

IACC’s work? 

Dr. INSEL. That’s a great point. And it is important to realize 

that the IACC isn’t inside, it isn’t outside; this is made up of a 

whole range of stakeholders. By the way, they virtually never agree 

on anything, either with respect to autism or with respect to anything else. So this is their best attempt to take an honest accounting and evaluation of how the funding agencies had done. Half of 

this group, nearly half, are actually non-Federal members. Most of 

them family members, some people with autism itself. They are 

hardly cheerleaders for either the IACC or for the Federal agencies. 

Mr. WOODALL. Mr. Chairman, I don’t want my time to expire 

without asking unanimous consent to enter the statement of Don 

Mueller in the record. 

Mr. MICA. Without objection. And you still have 5 minutes remaining. 

Mr. WOODALL. Thank you, Mr. Chairman. 

Don is the executive director of the Marcus Autism Institute, 

which is down in my part of the world. And I brag about the work 

that they do all the time. In fact, our school system that I represent, largest school system in the southeastern United States, 

has slots prepaid down there because of the work that they do and 

the importance of being able to find those limited resources available when we need them. Because there are not enough—there are 

not enough opportunities for folks to seek that help. But as I was 

reading your testimony, Doctor, I couldn’t help but notice a reference to some eye-tracking technology that sounded a whole lot 

like some of the things that I brag about coming out of the Marcus 

Institute. Am I right about that, or am I just a proud public servant bragging about the scientists and folks in his district? 

64 

Dr. INSEL. You have every right to brag. That is a spectacular 

group doing fantastic work and actually is probably the group that 

will open up this opportunity to diagnose autism before the first 

year. That is a game changer. 

Mr. WOODALL. When we think about the dollars that go into it, 

and I appreciate what GAO did to help folks to get their minds 

around the many different baskets that dollars can go into, candidly the dollars that we spend on palliative care aren’t all that inspiring to me. The dollars we spend on game-changing science, 

there is not a man or woman in my district who wouldn’t say, Rob, 

I will write the check, to tell me that what we are doing is making 

a difference. Tell me that it’s going to be a game changer, and I 

will write the check tomorrow to do more. I think so often when 

I have conversations with lay people about autism, it is a conversation about treatment of symptoms, not a conversation about changing a life. And if we can use this opportunity and others to publicize it, celebrate it, get folks excited about it, again, there is just 

no limit to the power of the American people to invest in ideas that 

will change the future. To Mr. Connolly’s point, yes, folks are worried about government waste. And the potential duplication is 

something that folks have on their mind. But we would not have 

the opportunity to talk about the ideas that we celebrate, we 

wouldn’t have an opportunity to talk about the successes, at least 

not in this forum, but for the laws mandating a report, the Senate’s 

requested report. 

And I am grateful that we have had that time. Let me ask you, 

Dr. Crosse, director of health care, you have heard Mr. Connolly’s 

criticisms of what I would call the standard GAO process, right? 

This is what we fund you to do. Hearing those concerns, knowing 

that, generally, as we look around this room, this is a group of 

folks who all agree on the goal and who all want to get to that goal 

as soon as possible, is there a tool that the GAO does not have in 

its quiver? Is there an arrow that is not in the quiver that you 

would have liked to have had to do something different in this report? Or did you do this report right the first time given the mandate, and you would do it the exactly the same way again? 

Ms. CROSSE. I believe that we did exactly what we were requested to undertake, and that aligned with the mandate we have 

been given and the approach that is being used to look at fragmentation, overlap, and duplication that can occur across the Federal Government. If it has come across as tone deaf, that certainly 

is not our intention. We try to be very clear, and we try to be very 

precise in what we say and in what we don’t say. And again, we 

did not call for reductions in funding. We did not say that dollars 

being spent on autism research were wasteful. 

Mr. CONNOLLY. Would my friend yield? 

Mr. WOODALL. Be happy to yield. 

Mr. CONNOLLY. I thank my friend. I just note for the record that 

GAO, we rely on GAO a lot, so sometimes GAO, they are fallible, 

too. They don’t speak ex cathedra. I recall a situation where GAO 

reported that there were 56 Federal financial literacy programs. 

And that went viral. They were wrong. There were not. They had 

to go back, and they admitted that, well, actually, maybe there 

65 

were 12 or 13, but the damage was done. That’s the concern I have. 

I thank my friend. 

Mr. WOODALL. Always looking for those areas of agreement. And 

certainly, this research is one of those. I think Mr. Connolly is absolutely right when he talks about the power of—that lobbying has 

in making these decisions. I will tell you, Dr. Insel, when constituents come and ask for an earmark or a plus-up in this area of NIH 

or that, I always tell them that we have tried to hire the absolute 

finest folks that the world has to offer. And if you believe that a 

lawyer trained out of the University of Georgia has more to offer 

scientific research than the best minds on the planet, I am happy 

to start making those decisions. But our goal is to find the very 

best folks, put them in positions of responsibility, then take every 

penny that we can find to dedicate in that direction, and allow 

those folks who see where those areas of opportunity are to dedicate those dollars appropriately. I am grateful to the coordinating 

work that you do. I know you can be doing many, many other 

things with your time. But none that would have a greater impact 

on the men and women that I serve back home in Georgia. And I 

am grateful to you for it. 

Dr. INSEL. Thank you, sir. 

Mr. WOODALL. Mr. Chairman, I yield back. 

Mr. MICA. Thank the gentleman. Mr. Massie, did you have any 

questions at this time? 

Mr. AMASH. Amash. 

Mr. MICA. Mr. Amash. I don’t know why I did that. 

Mr. AMASH. No, I yield back to you, Mr. Chairman. 

Mr. MICA. Thank you. There is a distinct difference between the 

two members. And I apologize. 

Then we will go to Mr. Posey, who had unanimous consent to 

participate. 

Mr. POSEY. Thank you, Mr. Chairman. 

And Dr. Insel, let me say that I think you are a good man, you 

are well qualified for the job, and you have good intentions. And 

I hope that this discussion about the direction it is going is not 

something that you are taking personally. You know. Some folks, 

and I am one of them, believe that the government and the scientific community has made a strategic error by mostly focusing on 

genetics-only research. I am just finishing up my opening statement here, basically. It seems NIH is clinging to outdated paradigms, and IACC leadership for some reason or reasons has obstructed progress in researching the environmental initiatives that 

are actually listed in the IACC’s own strategic plan. Those have 

been underfunded, while genetics have been funding at around 

threefold the recommendation. I am interested in knowing what, if 

any, changes Congress and the parents can expect to see from the 

IACC. 

Dr. INSEL. Well, thank you, Mr. Posey. If I can, just to put this 

in context, because often there is some confusion about what we 

mean when we use the term genetics or genomics. Just put autism 

aside for the moment. Again, you look at disorders that we study 

that are major public health problems that we know have a very 

clear environmental cause, lung cancer, asthma. Those are two 

pretty good examples. If you looked into the NIH funding for those, 

66 

it is heavily dominated by genomics. Now, we know there is an environmental cause for lung cancer, and we know the same for asthma. So what are we doing studying genomics? The reason is because in 2014, genomics isn’t about necessarily just finding a cause, 

it is a tool. It is the engine for discovery. It has given us a way 

to faster, better, and cheaper figure out mechanisms of disease. 

And sometimes that takes us in ways and places we had never expected to go. But to say that we—— 

Mr. POSEY. My time has run out here. Are mostly the studies 

that they were talking about being redundant on genomics, do they 

have the same goals? Do they have the same metrics? Are they 

being measured by the same metrics? Are they using the same 

techniques? 

Dr. INSEL. I am not sure that I am aware of projects that were 

thought to be redundant on genomics. In the area of genomics, everything that we do, not just in the United States, but around the 

world, filters into a single site called the database of Genotypes 

and Phenotypes, dbGaP. And so all of that has to be standardized 

to use exactly the same techniques and to provide the same kind 

of data. 

Mr. POSEY. Thank you. Your job is, you know, much broader 

than simply autism. And in the last 4 years, you were not only director of the National Institutes of Mental Health, but also the acting director of the newly formed National Center for Translational 

Medicine. Realizing there is only so many hours in a week, a day, 

I am curious about how much of your actual time outside of IACC 

meetings do you spend singularly focused on autism? 

Dr. INSEL. That’s a great question. My wife asks me that quite 

a bit, actually, because the hours are there, but on the percent 

basis, it’s not at this point the majority of my time. I have lots of 

other things that I am responsible for. I have to say that part of 

the reason I have focused as much as I have on autism for the National Institute of Mental Health is because increasingly we think 

about this as the prototype. Today we think about schizophrenia, 

bipolar disorder—— 

Mr. POSEY. Would you say it’s an hour a week, 4 hours a week? 

Dr. INSEL. Oh, no, no, no. It has got to be more than that. I 

would have to actually sit down and look at my calendar. But it 

probably tracks pretty well with our funding commitments. It is 

probably about 10 percent of our funding. And I suspect it is about 

10 percent of my time. 

Mr. POSEY. Okay. And if you find differently, if you would send 

the committee back—— 

Dr. INSEL. I will be happy to provide something for the record. 

Mr. POSEY. One of the findings of the GAO was the potential for 

duplicative research, which has been a big topic up here today. 

Who at the NIH actually makes the final funding decisions on autism research grants? 

Dr. INSEL. It is certainly not the IACC. It is the institute directors at the NIH, who are responsible for their own budgets. In this 

case, there are six different institutes that have some commitment 

to autism. Five of them are on the IACC. 

Mr. POSEY. Would you send me a list of them and their names 

and—— 

67 

Dr. INSEL. Absolutely. We will provide that for the record. 

Mr. POSEY. And their budget amounts? 

Dr. INSEL. Yes. 

Mr. POSEY. Is there a coordination between NIMH, the Child’s 

Health Institute, and other centers and institutes on what will and 

won’t be funded? 

Dr. INSEL. Yeah. Theres a separate parallel group called the 

ACC, the Autism Coordinating Committee, which is made up of the 

program officers at each of those institutes, those and others as 

well, deafness as well. They get together on a regular basis, at 

least once a month. They hash through their portfolios, both what 

they have and what’s coming in, and make decisions about what 

the funding should look like going forward. 

Mr. POSEY. Thank you. Will you send me a list of all those players and who they represent? 

Dr. INSEL. Absolutely. We will do that for the record. 

Mr. POSEY. I know that before the final decision there is a review 

by experts of grant applications. The IACC members do not have 

grant review authority the way that a typical advisory body for 

centers and institutes do. It was announced on April 29th in the 

Federal Register that the National Institute of Child Health and 

Human Development, Special Emphasis Panel, Outcomes in Autism Spectrum Disorders, Mechanisms and Needs Assessment 

would be meeting on May 6th in a closed door meeting to review 

grants. I am wondering who serves on this and other special emphasis panels that review the body of autism grant applications at 

the NIH. 

Dr. INSEL. There are two tiers of review at the NIH. One is the 

one you just described, which is the level of usually scientific experts, but sometimes public members as well, to look at scientific 

merit for the grants that come in, and to rank them. The second 

tier is it then goes to a body called the advisory council. And each 

institute has one of these. They go through that entire list with 

people from program, look at both scientific merit, public health 

needs, and also programmatic balance, and help the institute director to make a final decision about what should get funded. 

Mr. POSEY. Thank you. Would you please provide me in writing 

the name and staff position so I can kind of get that straight on 

a chart? 

Dr. INSEL. Right. We can lay that out for you. Would you like it 

for the institutes that handle autism research? 

Mr. POSEY. Everybody that touches it. 

Dr. INSEL. So that would be the members of council for each of 

those institutes. It is actually public record. 

Mr. POSEY. Both layers, yeah. 

Dr. INSEL. Well, so I should just clarify that the review committees, of which there are several, in this case the one that you reference is what is called a special emphasis panel. 

Mr. POSEY. Correct. 

Dr. INSEL. So that’s put together for just this particular review 

on this particular request for applications. We can certainly provide 

you with those names. Those are, of course, public. But we will get 

you that for all of the recent requests for applications. We just had 

three for NIMH, and we will make sure you have those names. 

68 

Mr. POSEY. Thank you. It just wasn’t in our package. And so it 

may be available, but you know, you can put your finger on it in 

5 minutes, and it would take my staff 5 days just as a practical 

matter. 

Dr. INSEL. It is not worth 5 days. We will get it to you. 

Mr. POSEY. Okay. Would you please provide that list their bios 

and CVs and financial disclosure forms? 

Dr. INSEL. And again, all of that is public record for government 

employees. And at the institute, directors and council members, all 

of that is available. For members of special emphasis panels, I 

would have to check to find out whether they are vetted in the 

same way in terms of their financial disclosures. I believe they are, 

but I would actually have to look at that. And we will let you know 

that for the record. 

Mr. POSEY. Okay. Thank you. Are there any parents of individuals with autism included in the review process? 

Dr. INSEL. Well, at NIMH, we have had a tradition of doing that, 

all the way from our—the ARRA funding, where they were a large 

part of the review, to now having generally a member of—usually 

a parent who sits on our council. At this point—or sometimes it is 

actually a person affected by the disorder. The most recent parent 

of a person with autism was Portia Iversen, who sat on the NIMH 

council until about 2 years ago. This rotates around. So the other 

public members, I don’t know that right now—we do have one parent of a person with autism, but that is not something that is public. But the people are chosen to serve partly to provide that kind 

of perspective. Now this is at the high level. This is at the council 

level that is making the final decisions on an advisory basis. 

Mr. POSEY. Yeah. Somebody from Autism Speaks, for example, 

what would be their odds of being on that review panel? 

Dr. INSEL. So for that first level, tier one, scientific review, there 

is—if they don’t have a conflict with applications coming in, we are 

always looking for people who can bring scientific expertise to that 

discussion. At the second level, at the higher tier, Portia Iversen 

was the founder of Cure Autism Now. So that is somebody who was 

deeply involved in the advocacy community. So, again, NIMH covers many disorders. It is not just about autism. But we have tried 

to make sure there is someone with an autism focus on the council 

so that those grants get a very careful look. 

Mr. POSEY. Okay. Have there been any discussions of public 

grants to balance out the private sector grants? 

Dr. INSEL. That’s a terrific question. And it’s something we 

haven’t talked about so far. But as the NIH funding has gone down 

about 25 percent over the last decade in terms of purchasing 

power, we have been fortunate that there has been an increase in 

private investment. Simons Foundation, Autism Speaks, the Autism Science Foundation, those three really making a difference 

and helping to buffer what has been a very difficult period for the 

NIH. The way that that gets coordinated is through the IACC. So 

we would love to have members or leadership from each of those 

private groups on the IACC. They have been there until recently. 

Rob Ring was just appointed from Autism Speaks. But he has not 

attended any of the meetings. That will happen. Because of turnVerDate Aug 31 2005 12:47 Dec 19, 2014 Jkt 000000 PO 00000 Frm 00072 Fmt 6633 Sfmt 6633 C:\DOCS\91799.TXT APRIL
69 

over at both Autism Speaks and Simons Foundation, we have lost 

their representation. But that is going to be repaired very quickly. 

Mr. POSEY. Good. I am glad to hear that. 

My time has expired, Mr. Chairman. I hope we do another round. 

Mr. MICA. Well, I am not sure how much additional time we will 

have. 

I had a couple of questions. 

Mr. Turner, did you have anything at this point? He has just 

joined us. 

Mr. TURNER. No. 

Mr. MICA. Let me just ask a couple of questions I didn’t get to 

before. And I was trying to look at, again, the most promising 

areas. And I talked about the neuroscience, and how do you pronounce it? 

Dr. INSEL. Genomics. 

Mr. MICA. Genomics. I had heard you mention some research, 

maybe I was wrong, about the second trimester. Could you elaborate on that? Is that another promising area? 

Dr. INSEL. Well, as Congressman Posey pointed out in his opening remarks, there is virtually no expert who would doubt that environmental factors are important for autism. We don’t know yet 

exactly what those are. And that has got to be a major focus going 

forward. The few that we do know about do point us towards the 

second trimester as the point at which they act. So whether it’s 

drug exposure, sometimes prematurity, other events, other kinds of 

exposures, even one that has been purported for pollution, when 

you map those factors onto development it is not post-natal, it is 

not early prenatal, it is really right in that period around 12 to 24 

weeks that we are most concerned. But what is it? You know, it’s 

probably many things. And how do we get our hands around that? 

And how do we help people to know what to avoid when they are 

carrying a baby at risk? Those are the questions that we haven’t 

yet answered. 

Mr. MICA. Well, one of the things that if you could provide us for 

the record, I would just like to have in the record, and I would ask 

you some of the money we are spending in the more promising 

areas, maybe you could just give us a little breakdown of estimates 

in the most promising areas for the future. I think that’s important 

to establish for the record. And then, again, we want to direct as 

many additional funds to where you have the promising research 

or results. So, again, if you wouldn’t mind providing that. 

Then you started talking about data collection. And I guess you 

are getting better at it. And what is it, NDAR? 

Dr. INSEL. Yes, sir. 

Mr. MICA. How old is that data collection system? 

Dr. INSEL. NDAR was started I believe in 2005, just built as an 

infrastructure. It has taken a while to grow it. We are up to over 

70,000 individuals with an ASD diagnosis, and millions, actually 

over billions of records. We are just seeing the first fruits of that 

as people—— 

Mr. MICA. And how much money are you spending on data collection? 

Dr. INSEL. It costs us about $3 million to build it. It is about a 

million dollars a year to—— 

70 

Mr. MICA. Is that adequate? Again, your sampling is somewhat 

small, 70,000, considering the population. And then the data collection I guess has become more sophisticated. Did you all look at 

that, Ms. Crosse? 

Ms. CROSSE. We did not look at that, no. 

Mr. MICA. But I think that’s also important, building an accurate 

database. But if you could, again, provide to the committee any information on where we might make improvements if we don’t have 

enough funds for data collection and we aren’t expanding that base 

of knowledge. I think those are my questions, follow-up questions 

at this point. It is just important that—you talked about the kinds 

of investments. And we want to make certain that we are investing 

properly, that if we don’t have the coordination that we need, that 

we achieve that. 

Dr. INSEL. Again, sir, just to make sure we are clear on this, I 

would push back against the sense that we don’t have sufficient coordination. I don’t think that’s the problem. And as I said at the 

outset, I don’t know that there is any disease area that does it better than autism. The problem is we just don’t have enough—— 

Mr. MICA. It’s also been held up as a model, too, of what we have 

done with the IACC. But again, we have some differing of opinion, 

and that’s what the hearing is about today, and making certain 

that we are targeted and focused adequately. Mr. Connolly. 

Mr. CONNOLLY. Thank you, Mr. Chairman. 

I just have two follow ups. One quick question for Dr. Insel. Ms. 

Crosse pointed out that NSF is not part of the IACC, and kind of 

was doing its own thing. Why isn’t it part of IACC, and shouldn’t 

it be? 

Dr. INSEL. It would be great if they were. They feel that their 

mandate is in basic science, that autism is a clinical problem, and 

this is outside of their lane. The fact is they work on issues, like 

robotics, that we think could be extremely helpful for the autism 

community. We—outside of the IACC, we have a lot going on with 

NSF. In fact, we have joint funding efforts with them in computational science and other areas. 

Mr. CONNOLLY. And here I do credit GAO, Ms. Crosse pointed 

out initially they said, no, we are not doing any autism research, 

and GAO discovered, well, actually they were doing about 30, I 

think you said. So it just seems to me, Mr. Chairman, that’s something we may want to follow up on. I am not sure it ought to be 

NSF’s decision whether or not they are part of the IACC. 

Dr. INSEL. Love to have your help on that. That would be terrific. 

Mr. CONNOLLY. I think that is a follow up, definitely, Mr. Chairman, if you want to work together on that. 

Mr. Yudin, just one question. I have known lots of families who 

have autistic kids. And you know, for 14 years, I was in local government and helped finance and oversee the 12th largest school 

district in the United States. And you talked about the best policy 

is try to integrate these kids into the general curriculum. And 

that’s a noble goal. But practically, most teachers have no training 

whatsoever in dealing with autistic kids. And it can be very challenging. There are all kinds of issues, depending on the spectrum. 

So what are we doing to provide that kind of training so that 

teachers are not afraid, not intimidated, not wanting to avoid this 

71 

integration in the general curriculum? Because if that’s the goal, 

the key is teachers who are trained and familiar and embrace that 

goal, too. 

Mr. YUDIN. Thank you, sir. That’s a fantastic question. We know 

that research shows that kids with disabilities do in fact do better 

when they have access to the general curriculum and they are held 

to high expectations. You know, as you noted, as everyone knows, 

autism spectrum disorder is in fact, you know, kids have autism on 

the spectrum. So there is a range of severity, a range of individual 

needs, interventions, services, and supports, you know, across that 

spectrum. We have invested in a number of efforts in researchbased strategies, such as positive behavior interventions and supports, PBIS is what it is known, and it is a school-wide effort that 

sets a framework for behavior. It sets clear expectations for behavior. Teachers are trained on it. Parents are trained on it. The 

school cafeteria workers are trained on it. Bus drivers are trained 

on it. And if implemented with fidelity, has fantastic outcomes that 

address a number of areas around behavior, around office referral, 

around suspensions, around attendance, around engagement, and 

ultimately around academic support. So I would start with that 

framework. That is a solid research base that is really making a 

difference in classrooms all across the country. What it also then 

does is frees up specialists, whether they are special ed. teachers, 

or counselors, or psychologists to then really work with kids that 

do have more intensive behavioral needs. We support a technical 

assistance center on intensive interventions that works with States 

and districts to provide those research-based tools and strategies. 

Mr. CONNOLLY. Thank you, Mr. Chairman. 

Mr. MICA. Mr. Posey. 

Mr. POSEY. Thank you, Mr. Chairman. 

And, you know, please don’t mistake me for advocating that we 

abandon genetic or genomic research. My question was just why 

the environmental-based research was funded at much less than 

the recommendation, and the genetic research was funded at three 

times more than the recommendation. What would you recommend 

to improve the relevance of research funded by NIH to families? 

Dr. INSEL. Can I get you to unpack that question a little bit to 

get some sense of—— 

Mr. POSEY. All right. How many of the therapies currently that 

are typically used by the autism community have been evaluated 

by NIH research grants? 

Dr. INSEL. There is a robust cohort of efficacy trials looking at 

a variety of interventions, both behavioral and biomedical interventions, pharmacological, and devices. But as you probably know, the 

range of what is being used in the community is vast. And in the 

absence of anything that seems to truly work in randomized control 

trials that has been shown to be effective and rapid and accessible, 

people are reaching for all kinds of things. So we do have effective 

behavioral interventions. At this point, in 2014, remarkably, we 

have no pharmacological treatment for the core symptoms of autism. And that is extraordinary. 

Mr. POSEY. Yeah. Okay. Some years ago, NIH staff informed this 

committee that a chelation study would be conducted to evaluate 

its benefits in children who test for high levels of heavy metals like 

72 

lead, mercury, and cadmium. Do you know if that was ever conducted? 

Dr. INSEL. I know that there was a proposal to do such a study 

in the NIMH intramural program. And my recollection of that, this 

is many years ago, was that it did not make it through the Institution Review Board process, that the IRB felt that it was difficult 

to do that study under the ethical constraints based on the information they had. 

Mr. POSEY. Okay. The previous question about the research 

grants. Could you also give us a list of those? 

Dr. INSEL. I am sorry, just to clarify the question about research 

grants, a list of—— 

Mr. POSEY. On therapies currently typically used by the autism 

community. You said there were a number of them. 

Dr. INSEL. Yes. Absolutely. And again, all of that information is 

also in this tome that has recently come out that looks at the accountability of the strategic plan. I should, because I didn’t respond 

directly to your question about the proportion of the budget that’s 

going to genetics versus environment, in the realm of looking at environmental risk factors, more than half is either on the environment, specifically on gene environment interactions, or epigenetics, 

which is a mechanism by which the environment would have that 

impact. So that’s in excess of $30 million that go into that area. 

Mr. POSEY. Okay. And this is just out of curiosity. Has NIH, 

NIMH, or NIH funded studies looking at the use of vitamin B6 in 

children with autism? Are you aware of that? 

Dr. INSEL. I would love to take a look at that for the record and 

let you know. I don’t know offhand of such a study. 

Mr. POSEY. There is a question of why there haven’t been studies 

of whether autism prevalence is higher in children who received 

versus did not receive one of the seven vaccines administered in 

the first year of life, and how you can legitimately state that vaccines don’t cause autism studies until the actual studies are conducted. And I am not saying you, I am saying anyone, you know. 

That’s not a personal statement. You know, put aside all the criticisms about how to do the study, where do you come down on that? 

Dr. INSEL. Well, this may be, again, a place where GAO might 

have suggested that there has been some duplication. There has 

been an enormous amount of focus on this topic over a long period 

of time. I have never counted the number of studies, but I know 

that there is a—even today yet another report out, a large meta 

analysis out of the University of Sidney looking at 10 different 

projects that have looked specifically at this question about the role 

of vaccines and, again, comes up completely empty handed. There 

is just no evidence there. So how much more needs to be done 

there, how much do you want to continue to bang away at that 

question? Personally, I think the environment is an important factor here, but it is probably going to be prenatal, not in the first or 

second year of life. 

Mr. POSEY. Well, are you aware of any studies that we have done 

that have not been tarnished by the touch of Poul Thorsen that 

conclusively have done a blind study of vaccinated versus 

unvaccinated? 

73 

Dr. INSEL. Well, those are two different questions. There has 

been an enormous amount of epidemiological work, not just in the 

United States but around the world. And part of what the report 

out of Sidney describes is that effort. The question about doing a 

prospective vaccinated versus unvaccinated clinical trial came up 

at our previous hearing. And I think that’s going to be a tough one 

to get through an Institution Review Board, to tell parents in a 

random way that you are not going to be allowed to vaccinate your 

children. 

Mr. POSEY. Okay. Let’s stop it right there. Because every time 

we have ever talked about doing one of those studies, some idiot 

in the media says I am suggesting that children intentionally don’t 

get vaccinated. And I don’t know that anybody ever has ever proposed that. But there are plenty of children whose parents will not 

allow them to be vaccinated. There are plenty of cultures where 

children are not vaccinated. And there are other reasons children 

are not vaccinated. And there are children who take large doses of 

vaccination, and children whose parents decide to have them take 

one vaccination at a time to avoid thimerosal. And I have not been 

able to ascertain that there has actually been a legitimate study 

done that wasn’t tainted by the touch of the international colossal 

scumbag Poul Thorsen. 

Dr. INSEL. Well, perhaps I can reassure you a little bit on that 

score. I agree with you that there are a lot of parents today who 

are choosing not to vaccinate. And that does provide maybe the 

unenviable opportunity to ask, does that matter? We are trying to 

do that through a very large study of 35,000 families with autism 

in a very large health care system where some of the families have 

decided, when they have a child with autism, not to vaccinate their 

next child. And the question will be, does that—two questions, actually. A, does that make a difference? Does that next child have 

a greater or lesser possibility of developing autism if they are not 

vaccinated? And the second question is, are they more likely to develop preventable medical illnesses as a result? 

I guess the other question I keep wondering for myself, since we 

have already done this, we don’t have the data yet, but we will 

very soon, is will—if the results come out negative again, will people accept that answer? 

Mr. POSEY. Absolutely. If it’s a transparent, bona fide study, I 

think no matter where people fall on the issue, what side, they 

would be relieved at a credible, transparent conclusion. Yes, I think 

everyone would be relieved, regardless of what the results are. 

They just want to see a straight arrow, bona fide examination, 

study, and conclusion. And I don’t think they want anybody to invent anything. I mean, I have had—I have talked to, you know, 

hundreds of mothers personally. And I am sure there’s thousands 

and maybe millions that I haven’t talked to who have said, you 

know, my child, usually a little boy, was absolutely perfectly normal until the day after he got his vaccinations. And through a related career, I have got a little bit of experience with mercury. And, 

you know, I know that if we find mercury in our fish, we shouldn’t 

eat them. And I think that the spectrum causes are very wide. I 

think this is one of them. I think genetic-enhanced foods are one 

of them. I mean, we changed genetics of what we eat and don’t exVerDate Aug 31 2005 12:47 Dec 19, 2014 Jkt 000000 PO 00000 Frm 00077 Fmt 6633 Sfmt 6633 C:\DOCS\91799.TXT APRIL
74 

pect it to change our genetics? I mean, there are so many things. 

I think pollution goes into it. I mean, we know that it harms children who eat lead pipes. I mean, clearly, the children who have 

eaten lead off the pipes, it has harmed the children. I mean, there 

is a lot of reasons for it. But one heavy reason that I hear often 

about is the thimerosal in the vaccinations. 

And I think it would be great if the government, who is here to 

do good things for people, would take that off the table. But not in 

a way that we met, and we did this and we did that, but in a very 

public way, and a very transparent way. You could I think remove 

that question forever with just one decent, highly qualified, respected study. 

Dr. INSEL. Sir, if you will permit me, as soon as we get the data 

in a form that has been accepted for publication, I would love to 

sit down with you and go through them. And we can do that one 

to one. 

Mr. POSEY. I look forward to it. 

Dr. INSEL. And let you see what that looks like. I am interested 

to see it myself. And we will know that I think in the next 3 

months. 

Mr. POSEY. Thank you. 

Mr. Chairman, you let me go over a little bit. Thank you very 

much. 

Mr. MICA. Thank you. Thank you, Mr. Posey, for attending and 

participating. And I also want to thank our three witnesses for 

their participation, testimony today. 

Without objection, we are going to leave the record open for an 

additional 7 days. And we have additional questions that we will 

be submitting to some of the witnesses for responses for the record. 

There being no further business, I do want to thank everyone 

again for participating. Raised a lot of important issues that looked 

at some of the study results from GAO and heard testimony from 

the IACC representative. And again, sorting through this and making certain that we are doing the best possible with taxpayer dollars is our goal. And hopefully, we can get closer to finding both 

the cause and prevention and help a lot of people who have had 

to struggle through the terrible problems brought about by autism. 

So with that, there being no further business before the Government Operations Subcommittee, this hearing is adjourned. Thank 

you. 

[Whereupon, at 11:05 a.m., the subcommittee was adjourned.] 

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