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80–405 PDF 2012

1 IN 88 CHILDREN: A LOOK INTO THE FEDERAL 

RESPONSE TO RISING RATES OF AUTISM 

HEARING 

BEFORE THE

COMMITTEE ON OVERSIGHT 

AND GOVERNMENT REFORM 

HOUSE OF REPRESENTATIVES 

ONE HUNDRED TWELFTH CONGRESS 

SECOND SESSION 

NOVEMBER 29, 2012 

Serial No. 112–194 

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 

DAN BURTON, Indiana 

JOHN L. MICA, Florida 

TODD RUSSELL PLATTS, Pennsylvania 

MICHAEL R. TURNER, Ohio 

PATRICK T. MCHENRY, North Carolina 

JIM JORDAN, Ohio 

JASON CHAFFETZ, Utah 

CONNIE MACK, Florida 

TIM WALBERG, Michigan 

JAMES LANKFORD, Oklahoma 

JUSTIN AMASH, Michigan 

ANN MARIE BUERKLE, New York 

PAUL A. GOSAR, Arizona 

RAU ́ L R. LABRADOR, Idaho 

PATRICK MEEHAN, Pennsylvania 

SCOTT DESJARLAIS, Tennessee 

JOE WALSH, Illinois 

TREY GOWDY, South Carolina 

DENNIS A. ROSS, Florida 

BLAKE FARENTHOLD, Texas 

MIKE KELLY, Pennsylvania 

VACANCY 

ELIJAH E. CUMMINGS, Maryland, Ranking 

Minority Member 

EDOLPHUS TOWNS, New York 

CAROLYN B. MALONEY, New York 

ELEANOR HOLMES NORTON, District of 

Columbia 

DENNIS J. KUCINICH, Ohio 

JOHN F. TIERNEY, Massachusetts 

WM. LACY CLAY, Missouri 

STEPHEN F. LYNCH, Massachusetts 

JIM COOPER, Tennessee 

GERALD E. CONNOLLY, Virginia 

MIKE QUIGLEY, Illinois 

DANNY K. DAVIS, Illinois 

BRUCE L. BRALEY, Iowa 

PETER WELCH, Vermont 

JOHN A. YARMUTH, Kentucky 

CHRISTOPHER S. MURPHY, Connecticut 

JACKIE SPEIER, California 

LAWRENCE J. BRADY, Staff Director 

JOHN D. CUADERES, Deputy Staff Director 

ROBERT BORDEN, General Counsel 

LINDA A. GOOD, Chief Clerk 

DAVID RAPALLO, Minority Staff Director 

(III) 

C O N T E N T S 

Page 

Hearing held on November 29, 2012 ...................................................................... 1 

WITNESSES 

Dr. Alan Guttmacher, M.D., Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of 

Health 

Oral Statement ................................................................................................. 8 

Written Statement ............................................................................................ 11 

Ms Coleen Boyle, Ph.D., Director, National Center on Birth Defects and 

Developmental Disabilities, Centers for Disease Control and Prevention 

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

Written Statement ............................................................................................ 26 

Mr. Bob Wright, Co-Founder, Autism Speaks 

Oral Statement ................................................................................................. 62 

Written Statement ............................................................................................ 65 

Mr. Scott Badesch, President, Autism Society 

Oral Statement ................................................................................................. 72 

Written Statement ............................................................................................ 74 

Mr. Mark Blaxill, Board Member, Safeminds 

Oral Statement ................................................................................................. 77 

Written Statement ............................................................................................ 79 

Mr. Bradley McGarry, Coordinator of the Asperger Initiative at Mercyhurst 

University 

Oral Statement ................................................................................................. 83 

Written Statement ............................................................................................ 85 

Mr. Michael John Carley, Executive Director, Global & Regional Asperger 

Syndrome Partnership 

Oral Statement ................................................................................................. 90 

Written Statement ............................................................................................ 93 

Mr. Ari Ne’eman, President, Autistic Self Advocacy Network 

Oral Statement ................................................................................................. 96 

Written Statement ............................................................................................ 98 

APPENDIX 

The Honorable Dan Burton, a Member of Congress from the State of Indiana, 

Opening Statement .............................................................................................. 115 

The Honorable Elijah E. Cummings, a Member of Congress from the State 

of Maryland, Opening Statement ....................................................................... 124 

The Honorable Chris Murphy, a Member of Congress from the State of 

Connecticut, Statement for the Record .............................................................. 126 

Mr. Poul Thorsen, M.D., Ph.D., SafeMinds, CDC Researcher—Fugitive from 

Justice, Background Report ................................................................................ 127 

Indiana University, Department of Psychiatry, School of Medicine, Statement 

for the Record ....................................................................................................... 142 

Mr. Brian S. Hooker, Ph.D., Biochemical Engineering, Statement ..................... 150 

Mr. Bob Wright’s response to the Questions for the Record ................................ 158 

NICHD, Director Guttmacher, Questions for the Record ..................................... 178 

HRSA, Response to Questions for the Record ....................................................... 188 

Responses to the Honorable Bill Posey, a Member of Congress from the 

State of Florida ..................................................................................................... 190 

Responses to the Honorable Patrick Meehan, a Member of Congress from 

the State of Pennsylvania .................................................................................... 200 

(1) 

1 IN 88 CHILDREN: A LOOK INTO THE FEDERAL RESPONSE TO RISING RATES OF AUTISM 

Thursday, November 29, 2012 

HOUSE OF REPRESENTATIVES, 

COMMITTEE ON OVERSIGHT AND GOVERNMENT REFORM, 

Washington, D.C. 

The committee met, pursuant to call, at 2 p.m., in Room 2154, 

Rayburn House Office Building, Hon. Darrell E. Issa [chairman of 

the committee] presiding. 

Present: Representatives Issa, Burton, Gosar, Labrador, Meehan, 

DesJarlais, Gowdy, Ross, Farenthold, Kelly, Cummings, Maloney, 

Norton, Kucinich, Tierney, Lynch, Connolly, Quigley, Davis, 

Yarmuth. 

Also Present: Representatives Posey, Smith of New Jersey, Buchanan, Barrow, Moran and Matheson. 

Staff Present: Ali Ahmad, Communications Advisor; Alexia 

Ardolina, Assistant Clerk; Kurt Bardella, Senior Policy Advisor; 

Robert Borden, General Counsel; Will L. Boyington, Staff Assistant; Molly Boyl, Parliamentarian; Lawrence J. Brady, Staff Director; Ashley H. Callen, Counsel; Sharon Casey, Senior Assistant 

Clerk; John Cuaderes, Deputy Staff Director; Howard A. Denis, 

Senior Counsel; Adam P. Fromm, Director of Member Services and 

Committee Operations; Linda Good, Chief Clerk; Frederick Hill, Director of Communications and Senior Policy Advisor; Christopher 

Hixon, Deputy Chief Counsel, Oversight; Mark D. Marin, Director 

of Oversight; Tegan Millspaw, Professional Staff Member; Mary 

Pritchau, Professional Staff Member; Laura L. Rush, Deputy Chief 

Clerk; Scott Schmidt, Deputy Director of Digital Strategy and Press 

Secretary; Cheyenne Steel, Deputy Press Secretary; Rebecca Watkins, Deputy Director of Communications; Jeff Wease, Deputy CIO; 

Jaron Bourke, Minority Director of Administration; Yvette Cravins, 

Minority Counsel; Ashley Etienne, Minority Director of Communications; Jennifer Hoffman, Minority Press Secretary; Carla 

Hultberg, Minority Chief Clerk; Elisa LaNier, Minority Deputy 

Clerk; Suzanne Owen, Minority Health Policy Advisor; and Dave 

Rapallo, Minority Staff Director. 

Chairman ISSA. The Committee on Oversight and Government 

Reform will come to order. This hearing on ‘‘1 in 88 Children: A 

Look Into the Federal Response to Rising Rates’’ will come to order. 

The Oversight Committee exists to secure two fundamental principles: First, Americans have a right to know that the money 

Washington takes from them is well spent; and, second, Americans 

2 

deserve an efficient, effective government that works for them. Our 

duty on the Oversight and Government Reform Committee is to 

protect these rights. Our solemn obligation is to hold government 

accountable to taxpayers because taxpayers have a right to know 

what they get from their government. 

We will work tirelessly in partnership with citizen watchdogs to 

deliver the facts to the American people and bring genuine reform 

to the Federal bureaucracy. This is our mission. And I might say 

today in many cases we’re dealing with people who, because of this 

affliction, may never pay taxes, but, in fact, their families and others pay for an entire life 

Congress spends a lot of time discussing and debating issues and 

determining by our philosophical beliefs what the role of government should be. As we have seen in these debates surrounding 

TARP, stimulus, healthcare reform, these kinds of issues ofttimes 

come down to where you fall on an ideological spectrum. 

Today is no such thing. We’re having a hearing focused on something that spans the ideological left to the ideological right. We’re 

drawing attention to something that has no political affiliation, no 

partisan allegiance, and sometimes, and we believe today, not nearly enough focus on something that does not shorten life, but dramatically or even slightly, but usually more than slightly, reduces 

the quality of life both for the individual and for their families. 

I’m a father. As far as I know, I’m one of the fortunate ones; I’m 

not the 1 in 88. But right now, if the numbers are accurate, and 

if they continue to grow from the now 1 in 88 that in some way 

are ASD affected, we, in fact, have an epidemic. It could be that 

some of the 1 in 150 at the start of the previous century was too 

low; that, in fact, people were simply not diagnosed. But few people 

believe that, in fact, there aren’t factors in our society, in our behavior, in the air we breathe, the water we consume or others that 

are affecting how many people will be afflicted. 

We’re going to hear from a distinguished panel first of people 

who do this for a living, try to get to the causes, prevention—I 

won’t say cure today, but at least the treatment, the understanding, and perhaps in some cases truly something that would 

mitigate their suffering. 

I know they’re frustrated. Congress, although we put nearly a 

quarter of a billion dollars a year directly into research, has not 

put the kind of dollars, perhaps, that could bring specific outcomes 

sooner. 

On our second panel, a number of individuals will say that, in 

fact, one of the problems is we’re looking on one side of the equation and not nearly enough on what to do for the victims of various 

parts of autism. The fact is they’re all right. There is not enough 

money being placed on the various possible causes of autism. There 

is not enough study. Our government does not collect statistics as 

well as perhaps someday soon we will so that, in fact, we can find 

out what the true number is, crosscheck every aspect of how that 

number, which is a human being, came to be afflicted. 

The truth is we have a lot to do. I will not claim that I have come 

here timely. This is the last few days of my first 2 years as chairman, and this is our first hearing. What I will promise you here 

today is that we will stay involved in this issue. We will stay inVerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00006 Fmt 6633 Sfmt 6633 C:\DOCS\80405.TXT APRIL
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volved through staff and through, if appropriate, additional hearings. 

I also would say to our first distinguished panel that one of the 

most important priorities I place today is, in fact, that we work 

with you and help you in this process; that we be a conduit to the 

rest of Congress on this important issue. 

In a few moments I’ll be swearing in—I’m sorry—I’ll be recognizing by unanimous consent a number of Members who would not 

ordinarily be here at a hearing because they are involved in this 

issue but serve on other committees. 

Additionally, I want to apologize to all of those people who, rightfully so, would be well to be heard here today. I could have had 

a second panel of at least 20 witnesses from organizations and 

brought from affected individuals. We had the difficult job of selecting just six, and, as the ranking member will undoubtedly agree, 

six is already a fairly large single panel. That’s one of the reasons 

I pledge to you today that any organization or individual that in 

the next 7 days provides to us, as required by our rules, in electronic format—or if you give it to us in paper, we will try to scan 

it—we will include your statements and your information in the 

record. We will hold the record open so that the many who could 

not be heard live in testimony will, in fact, be at least in the 

record. 

I want to particularly recognize Brian Hooker with Focus Autism, the American Academy of Children, and—I see it’s a long, 

long title. I’m sorry—who, in fact, has been one of the people who 

has championed for today’s hearing, and a number of others. 

They’ve been essential in my getting a better understanding. 

I also would like to thank—and we will be recognizing two witnesses—or two Members on each side—the former chairman of the 

full committee, Dan Burton, who years ago began a process of focusing on some aspects of this terrible disease. 

We, in fact, don’t know enough. Our goal is to know more. Today 

is but a down payment on that. 

With that, I’d like to thank the ranking member for his assistance in putting together today’s hearing and recognize him to his 

opening statement. 

Mr. CUMMINGS. Thank you very much, Mr. Chairman. And I do 

thank you for holding today’s hearing. 

Before I get started, I want to pay special note, as you have already done, to our friend who is leaving, Mr. Burton. Over my 17 

years on this committee, this has been an issue that he has constantly put forth and constantly made sure that we tried to address 

as best we could. 

So, Mr. Burton, I want to thank you for your vigilance, and I 

want you to know that although you may be leaving the Congress, 

as the chairman has said, we will continue to fight. And I know 

you will, too. 

Mr. Chairman, we have learned much about autism spectrum 

disorders over the past decade. Taxpayer-sponsored research has 

identified risk factors and evaluated therapies to assist with some 

symptoms. Physicians and parents now have a better understanding of the developmental signs and the symptoms allowing for 

4 

earlier detection. And educators have experience with new methods 

and approaches for assisting children with autism. 

Congress has also acted to help individuals with autism and 

their families in significant ways. In 2010, we passed the Affordable Care Act, which contained significant new protections. Insurers may no longer discriminate against individuals based on preexisting conditions. Insurers may no longer impose lifetime caps on 

healthcare coverage. New plans must include screening for autism 

without additional costs to the parents. And young people diagnosed with autism spectrum disorders may remain on their parents’ health insurance plans until they are 26 years old. These are 

real and significant protections that will improve the lives of millions of American families. 

Even with this progress, there is still more to learn, and there 

is still more to do. While autism affects all racial, socioeconomic, 

and ethnic groups, some studies have shown that African-American, Hispanic, and Asian children are less likely to receive an 

early diagnosis. These delayed diagnoses cause minority children to 

be further behind in the development of language and motor skills. 

We must be vigilant in emphasizing early detection and intervention for all our children, as an early diagnosis can make a critical 

difference in the lifelong development of a child. 

We must also continue to invest Federal research dollars in new 

and evolving therapies to improve the lives of those with autism 

spectrum disorders. In my district we house the Kennedy Krieger 

Institute, an internationally recognized institution dedicated to improving the lives of individuals with developmental disorders. 

These institutions improve the quality of life, education, and continued development of those affected by autism spectrum disorders, 

and we must continue to support that. 

Today’s hearing is an opportunity to examine what has been 

done about autism spectrum disorders to date and what more 

needs to be done in the future. There are many experts, individuals, and groups who can help us in this effort. 

And I want to take this moment to thank all of you for being 

here. As the chairman said, there were so many people interested 

in this issue, so many who wanted to speak. But I want to say to 

you what I said to Bob Wright of Autism Speaks a little earlier 

today. I thank you for caring about somebody other than your children and yourselves, because what you are doing here today is raising this issue so that other children other than those—or other 

folks other than those that may be in your own families, maybe 

your friends, will benefit in the future. In other words, you are 

touching the future, and you are making it possible for those who 

are going through the autism spectrum disorders to have a better 

future. And so I thank you all for what you are doing. 

And as I said to Bob Wright, you must stay the course. One of 

the things that I have learned from being in Congress these 17 

years is that in order for these causes to move forward, you have 

to keep banging the drum, and you must drum—keep banging 

louder and louder and presenting your case so that after it’s all 

over, there’s not, as my mother would say, motion, commotion, 

emotion, and no results. 

5 

I want you to be successful in what you’re doing. Life is short. 

And so what we must do is try to use our energy so that we can 

get the best possible results. And I am so glad the chairman said 

what he said about sticking with this, addressing it, and we encourage all of you to work with us as we move forward. 

And with that, Mr. Chairman, I thank you. 

Chairman ISSA. I thank the gentleman. 

I now recognize the former chairman of the full committee Mr. 

Burton for 5 minutes. 

Mr. BURTON. Thank you, Mr. Chairman. 

Let me start off by saying, contrary to what has been stated in 

the media over the years, I am not against vaccinations. I believe 

that vaccinations have a very important place in our society and 

have given us one of the best health regimens in the history of 

mankind. People live longer and live better and have less disease 

because we have vaccinations. 

What we have always opposed is putting toxic chemicals or metals in the vaccinations. Thimerosal contains mercury. When I was 

a boy, we used to have mercury in thermometers. And they said 

if you break that thermometer, and the mercury gets on your 

hands as years went by, that was toxic. 

In Indianapolis, we had a school where the—in the chemical laboratory in the health science room, they broke a vial that had some 

thimerosal in it. They evacuated the school, they burned the 

clothes of kids that came in contact with it, and the fire department came in with all kinds of equipment to make sure they 

weren’t exposed to it. 

Women who are pregnant, they say don’t eat fish that has mercury in it, and they caution them that there are certain kinds of 

fish you don’t eat. You don’t drink water that has any mercury it 

in. 

There’s all kind of reasons not to be exposed to mercury, and yet 

we continue to put it in vaccinations as a preservative. 

In 1929, they came up with thimerosal. They tested it on 29 people that had meningitis. They all died of meningitis, but they said 

that mercury in the vaccinations or the thimerosal didn’t cause any 

of the problem. It was not a contributing factor. So ever since 1929, 

it has never been completely tested, and they continue to use it in 

vaccinations. It wasn’t so bad when a child got 1 vaccination or 2 

or 3, but when they get as many as 28 or 29 before they go in the 

first grade, it really hurts them. It causes a cumulative effect. The 

brain tissues do not chelate it. It stays in there, and it causes severe, severe problems. 

Now, I had, during the chairmanship which I had in this committee, when I was chair for 6 years, we had about 4 years of hearings. We had people from all over the world, scientists from every 

part the world, doctors from every part of the United States who 

testified. And people from CDC and FDA said there’s no evidence 

that the thimerosal causes any neurological problems in people who 

are vaccinated. 

And then we kept on and kept on, and finally we had some people from FDA and CDC who came and testified and said there is 

no—get this word—there is no conclusive evidence that the merVerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00009 Fmt 6633 Sfmt 6633 C:\DOCS\80405.TXT APRIL
6 

cury in the vaccinations causes neurological disorders. No conclusive evidence. 

Now, that word ‘‘conclusive’’ ought to stick in everybody’s minds, 

because what it means is there is a possibility. And my question 

has always been, and I am convinced, that the mercury in vaccinations is a contributing factor to neurological diseases such as autism and Alzheimer’s. I’m convinced of it after all those years we 

had hearings. 

But that word ‘‘conclusive,’’ ‘‘there is no conclusive evidence,’’ creates a doubt. And my question to the presidents and CEOs of pharmaceutical companies has always been, if there’s any doubt, if 

there’s any doubt that the mercury in vaccinations can cause a 

neurological problem, then get it out. You shouldn’t put mercury in 

any form in the human body, especially in children in vaccinations, 

or adults, in my opinion. 

When we get a vaccination for flu, every year we get a flu vaccination, we have thimerosal, fellows. I don’t know if you know that 

or not. They are injecting a certain amount of mercury in your 

body, and over a period of time, I believe it does have an adverse 

impact on the neurological system of adults, and I think it’s a contributing factor to other diseases, such as Alzheimer’s. 

Let me just say that the thing we need to do is always err on 

the side of safety. If the pharmaceutical industry were to go to single-shot vials, then you would eliminate the possibility of neurological problems from vaccinations because there wouldn’t be any 

mercury in it. 

And the last thing I want to say real quickly—I’ve got 27 seconds—is we passed a Vaccine Injury Compensation Fund to compensate those people who are injured by vaccinations, and it was 

supposed to be something that was—people could work with the 

government to get that money. The pharmaceutical companies were 

putting money into that fund. But it’s so hard for a person who’s 

had a damaged child or a damaged adult to get any money out of 

that fund. It’s unbelievable. And we need to reevaluate that fund 

to make sure people who are damaged by mercury in vaccinations 

need to have access to that so they can at least have some compensation to help with the rest of their lives. These people are 

going to live 60, 70 years, and they are going to be a burden not 

only on the families, but on society itself. 

Chairman ISSA. I thank the gentleman. The gentleman yields 

back. 

I now ask unanimous consent that our colleagues, Mr. Posey of 

Florida, Mr. Barrow of Georgia, and Mr. Matheson of Utah, be allowed to sit on the dais and ask questions at the conclusion of 

other seated Members. Without objection, so ordered. 

It’s now my pleasure to recognize the distinguished gentleman 

from Illinois Mr. Davis for 5 minutes. 

Mr. DAVIS. Thank you, Mr. Chairman. And I thank you for calling this hearing. 

As one who has spent much of my adult life working as a professional in the areas of health planning, health research and delivery, I firmly believe that the Federal Government has an important 

role to help understand autism spectrum disorders and to address 

the needs of our citizens with autism across their life spans. 

7 

I, too, want to commended the former chairman of this committee, my good friend Dan Burton, for using his position as chairman and beyond to focus on this particular issue and cause the 

committee and others to continuously take a hard look at it. 

Dan, I commend you for your efforts and certainly wish you well 

as you revert back to private life. 

I’m very proud to represent a premier institution involved in the 

research and service provision of people with autism, specifically 

the Therapeutic School and Center for Autism Research operated 

by the Easter Seals in my congressional district as a part of the 

Illinois Medical District, which is the largest medical district in the 

country. 

This one-of-a-kind facility is unique in the Nation because it combines on a single campus educational, research, training, early 

intervention, school-to-work transition, and independent-living capabilities. The continuum of services to persons with autism is impressive and will help advance a research-driven context for teaching, learning, and clinical and medical interventions related to autism. 

As an ardent advocate of persons with all types of disabilities— 

physical, mental, or developmental—I strongly supported the provisions of the Patient Protection and Affordable Care Act that protect 

families and individuals affected by autism spectrum disorders. 

I want to thank all of the witnesses for coming to join with us. 

Again, Mr. Chairman, I thank you for calling this hearing and 

look forward to our discussions here this afternoon, and I yield 

back the balance of my time. 

Chairman ISSA. If the gentleman would yield his remaining time 

to the gentleman from Ohio, I would appreciate it. 

Mr. DAVIS. I would be delighted to do so. 

Chairman ISSA. Mr. Kucinich is recognized for 2 minutes. 

Mr. KUCINICH. Thank you very much, Mr. Chairman. 

Having had the opportunity to work with Mr. Burton on this for 

the last 10 years, I remember well, as I’m sure Mr. Burton does 

and some members of this committee do, a time when a provision 

was snuck into a bill on a homeland security that essentially 

shielded from lawsuits the manufacturers of thimerosal. This is 10 

years ago. And you know what? No one of the Members that have 

been here less than 10 years, no one knew where that provision 

came from. It came out of nowhere and ended up getting buried in 

a conference report, and, of course, it passed. 

And, you know, I mention this because it’s not as though we just 

discovered this matter. And while I salute the chair for holding this 

hearing, we didn’t just discover this. And my own theory is while 

there are studies that are out there that are implicating environmental factors in autism, think about this for a minute. We know, 

as Mr. Burton laid out, the component of thimerosal that—one of 

the components supposedly to stabilize it is mercury. Well, we all 

know that mercury is more than a contaminant, it’s an environmental toxin. But it doesn’t only exist in liquid form. You know, 

mercury can also be inhaled. And I would guess, and this is just 

my theory, that we’re not only talking about drug manufacturers 

here, we might be talking about coal companies, too. 

8 

You know, we have to be aware. There are reasons why we—why 

this Congress and this government has not effectively addressed 

this issue, and when you have Lilly and others, Eli Lilly and others, contributing millions of dollars to try to affect the outcome of 

elections. 

I will tell you, while I—I salute this chair for taking this on, because at the bottom of this you have special interest groups who 

would resist any deeper research on it because it’s going to affect 

their bottom line. Meanwhile, you have children all over the country turning up with autism. 

So this is a new beginning, I salute the chair for making it, but 

this goes way beyond thimerosal, and you can start thinking about 

coal. Thank you. 

Chairman ISSA. I thank the gentlemen on all sides. 

I now ask unanimous consent that our colleague from New Jersey Mr. Smith be allowed to participate in today’s hearing. Without 

objection, so ordered. 

And I will announce that if any individuals would like to be in 

a little more comfortable situation, we do have an overflow room. 

And if they would just let our staff know, they would make sure 

that if they gave up their seat here, that they would be able to be 

in the overflow room. It may be more comfortable for some of our 

guests. 

I now turn to our first panel. 

The distinguished Dr. Alan Guttmacher is Director of the Eunice 

Shriver National Institute of Child Health and Human Development at the National Institutes of Health. And I actually knew the 

namesake of your organization during her time. 

And Dr. Coleen Boyle is Director of the National Center of Birth 

Defects and Developmental Disabilities at the CDC. 

With that, pursuant to the requirements and rules of this committee, would you please rise to take the oath, and raise your right 

hands. 

Do you both solemnly swear or affirm that the testimony you are 

about to give will be the truth, the whole truth, and nothing but 

the truth? 

Thanks. Please be seated. 

And let the record indicate both witnesses answered in the affirmative. 

You are important witnesses, and we will not stop you if you go 

slightly over 5 minutes. But we do have a large second panel, and 

I would ask that you bear in mind that all of your opening statements and additional extraneous material you may choose to submit to us will be placed in the record. So if you abbreviate or go 

off message, it doesn’t change the official record for you. 

With that, Dr. Guttmacher, you are recognized. 

WITNESS STATEMENTS 

STATEMENT OF ALAN GUTTMACHER 

Dr. GUTTMACHER. Thank you, Mr. Chairman. I’m also a pediatrician and medical geneticist, and a member of the Interagency Autism Coordinating Committee, or IACC, reauthorized most recently 

by the Combating Autism Reauthorization Act of 2011. 

9 

Let me thank the Congress for its continued support of research 

and other activities regarding autism spectrum disorders. That 

support has made possible remarkable advances in autism research 

and helped to better identify and meet the needs of people with 

ASD and their families. 

ASD includes diverse conditions that share distinctive styles of 

or impairments in communication skills and social interactions, as 

well as restricted, repetitive, or stereotyped behaviors. The combination and degree of impairments vary, creating an array of conditions that range from what many would see as normal to significantly disabling. Two decades ago ASD was thought rare. Today, 

with CDC’s latest prevalence estimates, it is a national health priority. 

The IACC plays a pivotal role in bringing together Federal agencies, nonprofit organizations, and the public to identify priorities 

and strategies to address them. It includes individuals on the autism spectrum; parents of children and adults with ASD; other advocates, researchers, and service providers; and officials from Federal agencies. 

The IACC welcomes public comment at all full committee meetings, regularly invites written public comment, and holds town 

halls. Thus, a diversity of perspectives on ASD informs IACC activities and recommendations. It is a committed group. While the 

law requires 2 meetings a year, the committee and its subcommittees meet as many as 17 times a year. 

The law charges the IACC to update a strategic plan annually. 

We are drafting, as always, with autism community input, a 2012 

update to reflect the latest advances, remaining gaps, and emerging needs in autism research. The plan encompasses priorities from 

fundamental biology to services across the life span. 

Over the past decade autism research funding has grown substantially. The NIH leads Federal research efforts on ASD, investing $169 million in fiscal year 2011, three times more than 10 

years ago. In 2009 and 2010, $122 million in additional American 

Recovery Reinvestment Act funds were also invested. 

As Congress has emphasized, early diagnosis and intervention 

are critical. This year NIH-funded researchers identified brain pattern aberrations at as early as 6 months of age in infants who went 

on to develop autism, the earliest such changes ever recorded in 

autism, and one of a number of recent findings to suggest that the 

factors causing autism may operate very early in development. 

Last year researchers demonstrated that doctors’ offices can use 

a short questionnaire to screen inexpensively for ASD at the 1-year 

well-child visit. Another promising diagnostic tool, a 1-minute test 

to detect eye-gaze patterns specific to autism, had nearly 100 percent specificity in infants as young as 14 months. 

But early diagnosis is viable only if effective interventions are 

available. Recent ASD trials have validated early interventions to 

improve health outcomes and quality of life. For instance, a recent 

behavioral intervention study showed improved IQ, language, and 

social development in young children. And progress is also being 

made on interventions for adults. A recent study showed, for instance, that for the many adults with ASD who have impaired abilVerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00013 Fmt 6633 Sfmt 6633 C:\DOCS\80405.TXT APRIL
10 

ity to recognize faces, a computerized training program improved 

facial recognition skills. 

Many recent advances have come from NIH’s Autism Centers of 

Excellence program, which currently supports nine centers and networks across the country, with two additional awards expected in 

2013. 

The research covers a variety of topics aligned with the IACC’s 

strategic plan, including nonverbal ASD, genetic and environmental risk factors, potential treatments in determining why ASD 

is five times more common among boys. 

We do not know the causes of ASD, but recent findings highlight 

the need to focus on both environment and genetics. NIH and CDC 

have established large research networks to collect extensive data 

on environmental exposures and health outcomes, and conduct 

powerful analyses to identify factors that contribute to autism. 

Those networks explore possible causative factors in the environment before, during and after pregnancy. Just this week one of 

these networks published a study that suggests prenatal and earlylife exposure to car emissions is associated with autism. 

On the services front, HRSA has invested substantially, improving physical and behavioral health of people with ASD, practitioner 

training and service provision. In fiscal year 2012, Congress appropriated over $47 million to HRSA for autism and other developmental disorders. This supports 43 interdisciplinary training programs, which provide services and trainingto 41 States and include 

autism intervention projects for underserved populations. 

Federal agencies also use public-private partnerships to maximize our work, such as NIH’s National Database for Autism Research, which coordinates with other autism data repositories to 

enhance researchers’ access to data. Programs like these that involve collaboration with patients and families bring together hundreds of researchers and clinicians with tens of thousands of people 

nationwide affected by ASD. 

The Administration of Intellectual Developmental Disabilities, 

with help from several nonprofit organizations, supports the 

AutismNOW Project, offering a call center, Web-based clearinghouse of resources, and twice-weekly autism webinars. The NIHsupported Association of University Centers on Disabilities is improving early identification of autism through 25 Act Early Ambassadors who train physicians in identifying, diagnosing, and managing ASD. 

In conclusion, since the establishment of the IACC, a wide variety of research, service, and education expertise have come to bear 

on autism. Research is rapidly translating to practical tools for use 

in the clinic and the community. Federal agencies are coordinating 

efforts to identify best practices to support the lifelong education, 

health, and employment needs of people on the spectrum. 

Thank you for this opportunity to provide testimony on such an 

important topic. 

Chairman ISSA. Thank you, Doctor. 

[Prepared statement of Dr. Guttmacher follows:] 

11 


Insert offset folio 1 here 80405.001

Testimony before the 

Committee on Oversight and Government 

Reform 

United States House of Representatives 

Autism-related Issues 

Dr. Alan Guttmacher, M.D. 

Director, Eunice Kennedy Shriver National Institute of Child 

Health & Human Development 

National Institutes of Health 

U.S. Department of Health and Human Services 

For Release upou Delivery 

Thursday, November 22, 2012 

Expected at 2:00 p.m. 

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Good morning Chairman Issa, Ranking Member Cummings, and distinguished members of the 

Committee. Thank you for the opportunity to provide testimony today. My name is Dr. Alan 

Guttmacher, and I am a pediatrician and Director of the Eunice Kennedy Shriver National 

Institute of Child Health and Human Development (NICHD) at the National Institutes of Health 

(NIH). I have been a member of the Interagency Autism Coordinating Committee (lACe) -

created by the Children's Health Act of 2000 (CHA), reestablished by the Combating Autism Act 

of 2006 and reauthorized by the Combating Autism Reauthorization Act of 2011 (CARA) - since 

my arrival at NICHD in 2009. I have been invited to testify on behalf of NIH and the IACC 

regarding the status of biomedical research, services programs, and interagency coordination of 

activities related to autism spectrum disorder (ASD). 

The IACC appreciates Congress' continued support of research and services related to ASD. 

With the reauthorization of the Combating Autism Act, the Department of Health and Human 

Services (HHS) and Federal and private partners have continued - through the IACC - to 

engage with the public and work collaboratively on autism-related activities. These efforts have 

enabled remarkable advances in the field of autism research and helped us to identify and meet 

the service needs of all people affected by autism, individuals, and families alike. 

ASD is a diverse collection of disorders that share common impairments in verbal and 

nonverbal communication skills and social interactions, as well as restricted, repetitive, and 

stereotyped patterns of behavior. The degree and specific combination of impairments can 

vary from one individual to the next, creating a heterogeneous disorder that can range in 

impact from mild to significantly disabling. Two decades ago, ASD was considered a rare 

disorder. Today, with the Centers for Disease Control and Prevention's (CDC's) March 2012 

estimates of 1 in 88 children in the United States being identified with an ASD, this disorder has 

become an important national health priority, affecting virtually every community across the 

country. In 2006, Congress passed the Combating Autism Act to strengthen Federal 

coordination of issues related to ASD and to enhance public-private collaborations in order to 

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accelerate research to improve the lives of people with ASD and their families. Congress 

reauthorized the Combating Autism Act in 2011, allowing the continuation of these efforts, 

including the work of the IACC. 

The IACC has played a pivotal role in helping Federal agencies, non-profit organizations, and 

members of the public work together to identify priorities and strategies to address key issues 

of importance to the autism community. I will briefly discuss the lACe's membership, its 

transparent process, its collaborative activities, the framework provided by the lACe's Strategic 

Plan, and its current activities. I also will share examples of efforts under way in various 

agencies within the Department, some recent advances in ASD research, and how the IACC's 

Strategic Plan with extensive input from the public has facilitated these advances. 

Since its beginning in 2000, the IACC has provided both an important forum for public 

discussion of autism issues and a framework for research and services that incorporates the 

needs identified by affected individuals and families, advocates, providers, researchers, and 

other community members. The membership of the IACC includes both representatives of 

Federal agencies and public members, representing a diverse set of stakeholder groups within 

the autism community, creating a critically important public-private dialogue on issues related 

to autism. Currently, the IACC includes three people with ASD, several parents of children and 

adults with ASD, members of the advocacy, research, and service provider communities, and 

officials from the following Federal agencies and offices that are involved in ASD research or 

services provision: Department of Defense (DoD), Department of Education (ED), HHS's 

Administration on Intellectual and Developmental Disabilities (AIDD)/Administration for 

Community Living (ACL), Agency for Healthcare Research and Quality (AHRQ), CDC, Centers for 

Medicare & Medicaid Services (CMS), Food and Drug Administration (FDA), Health Resources 

and Services Administration (HRSA), five institutes of NIH, and the NIH Director. Major autism 

research and services organizations represented on the IACC include Autism Science 

Foundation, Autism Society, Autistic Self Advocacy Network, Autism Speaks, SafeMinds, Simons 

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Foundation, and Somali American Autism Foundation. The diversity of the lACe's membership 

serves to foster dialogue on a wide variety of issues of importance to the autism community. 

In addition to the voices and perspectives added by its members, the IACC has served as a 

forum for public participation by having public comment periods at every fulllACC meeting, 

regularly inviting written public comment, and conducting formal requests for information from 

the public and holding town hall meetings. The IACC has provided a high level of transparency 

for the public by actively disseminating information about its activities via e-mail, the IACC 

website, webcasts, and Twitter. By including both Federal and public members, and by 

fostering public engagement through a variety of means, the IACC ensures that a diversity of 

ideas and perspectives on ASD are brought to the table to inform the lACe's activities and 

recommendations. While the law requires the IACC to meet twice a year, the IACC and its 

subcommittees have met between 7 and 17 times a year since 2007, for a total of 67 times. 

This includes full committee and subcommittee meetings, planning groups, workshops, and 

town hall meetings. 

Under the Combating Autism Act, enacted in December 2006, the IACC is charged with 

developing and annually updating the lACe's Strategic Plan for ASD research. In fulfilling these 

requirements, the IACC met many times and gathered extensive public input in 2007 and 2008 

to shape its first comprehensive IACC Strategic Plan, released in January 2009; updates were 

issued in 2010 and 2011. The new IACC reauthorized under CARA is currently in the process of 

drafting a 2012 update of the lACe's Strategic Plan that reflects the latest advances and 

progress in the field of autism research, as well as remaining gap areas and emerging needs. 

The IACC developed its original 2009 IACC Strategic Plan with a great deal of participation from 

the public, including planning meetings, town hall meetings, and requests for information, and 

has continued gathering public input to inform subsequent updates. 

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The public's participation in IACC meetings and planning efforts, combined with the 

contributions of scientific and subject matter experts and all the major Federal agencies and 

private funders, resulted in a plan that provided a clear path to move autism research forward 

in targeted, innovative ways to help public and private agencies prioritize activities. The first 

IACC Strategic Plan was organized into six chapters that reflected the needs expressed by the 

community: early and accurate diagnosis, better understanding of how autism develops, 

enhanced ability to identify risk factors, development of new and more effective interventions 

and treatments, the need for more research to inform and enhance services, and the 

development of better approaches to meet the changing needs of people with ASD over their 

entire lifespans. In 2010, the IACC also added a chapter on the infrastructure needed to 

support a robust research effort. As you can tell, the lACe's Strategic Plan has a broad scope, in 

part because it was developed through the cooperation of both research- and services-focused 

agencies and private organizations. While the lACe's Strategic Plan focuses on research as the 

law requires, it encompasses a range of research that goes from fundamental biology of ASD to 

inform new diagnostics and therapies, to the actual development of necessary tools and 

approaches, and finally to research that can inform and enhance services programs to meet the 

needs of people with autism across the lifespan. 

Research Funding 

Over the past decade, funding has grown significantly for research on the underlying biology 

and risk factors associated with ASD, as well as research that seek better treatments, earlier 

diagnoses and better, more effective services. The NIH leads Federal biomedical research 

efforts on ASD. The NIH invested $169 million in ASD research in fiscal year (FY) 2011, more 

than 40 percent above FY 2008 levels. In FYs 2009-2010, $122 million in funds made available 

through the American Recovery and Reinvestment Act (ARRA) were also invested across these 

areas, with the largest proportion of funding devoted to identifying genetic and environmental 

risk factors. The first IACC Strategic Plan was completed just as NIH received the significant 

additional funding from ARRA, so, with a strategic plan in place to guide priorities, NIH allocated 

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the additional funding between FY 2009 ($64 million) and FY 2010 ($58 million) to support a 

variety of projects addressing the most critical research needs highlighted by the IACC. 

Including these ARRA funds, the overall NIH investment in autism research was an 

unprecedented $218 million in FY 2010, more than double the funding prior to the Combating 

Autism Act. 

CDC leads surveillance research efforts and establishes United States prevalence for autism. 

Dr. Coleen Boyle will provide more details on CDC's surveillance work in her testimony. 

Research Advances 

I'd like to share with you some of the exciting scientific advances we have seen in ASD research 

as a result of the increased investment in autism research. Since the passage of the Combating 

Autism Act, there has been a groundswell of activity on multiple fronts, from game-changing 

scientific discoveries reshaping the field of autism research to real-world applications that can 

help people with ASD and their families now. 

Diagnosis and Intervention 

One of the main provisions of the Combating Autism Act was support for early diagnosis and 

intervention. CDC conducts surveillance and reports that the median age of earliest known ASD 

diagnosis documented in children's records varied by diagnostic subtype (Autism Disorder: 48 

months; ASD/PDD: S3 months; Asperger Disorder: 7S months) and varied by sociodemographic 

group and geographic location. With recent advances, diagnosis by age 14 months is now a 

realistic possibility, and researchers are actively pushing the detection window to even younger 

ages. In April 2011, NIH-funded researchers demonstrated that a simple, low-cost, practical 

screening tool involving a checklist that takes only five minutes for a parent to complete in 

doctors' offices can be used to detect ASD during a child's one-year well-baby check-up. The 

checklist includes questions about the child's emotions, eye gaze, communication, gestures, 

and other behaviors. 

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More than 100 pediatricians in San Diego County, CA participated in a study using the tool to 

screen over 10,000 one-year-old children and found that the checklists accurately identified 

children with ASD and other developmental delays in 75 percent of cases. Impressively, all 

pediatricians who participated in the study decided to continue using the tool in their practices 

after the study ended because they recognized the tremendous potential benefit it could 

provide by identifying autism earlier, allowing them to direct families toward early 

interventions that can help support positive outcomes earlier in life. Another promising 

diagnostic tool in development is a simple, i-minute test that detects eye gaze patterns specific 

to infants with autism. Researchers at University of California, San Diego who received funding 

from NIH found that this test, which assesses the infants' preference for looking at videos of 

moving geometric shapes versus social movement, identified infants as young as 14 months old 

who had autism with nearly 100 percent specificity based on their preference for staring at 

moving geometric shapes. These promising diagnostic tools, combined with CDC's health 

education campaign, "Learn the Signs. Act Early," can improve early identification and provide 

great potential for reducing the age of diagnosis, thus allowing children and their families to get 

the services and supports they need when those services and supports can help the most. 

Of course, early diagnosis is only valuable if effective interventions are available. Recently 

published results from several successful trials of early interventions have validated approaches 

that are effective in young children, creating real promise of improved health outcomes and 

quality of life for children with ASD. In a recent NIH-funded study, children from 18-30 months 

old with autism who participated in an innovative, high intensity developmental behavioral 

intervention called the Early Start Denver Model (ESDM) showed normalized brain activity and 

greater improvements in autism symptoms, 10, language development, and socia! behaviors, 

when compared to another group of ASD children that participated in a 2-year community 

intervention. In another groundbreaking study, a group of investigators jointly funded by HRSA 

and NIH reported that an intervention designed to enhance social engagement in toddlers 

improved social, language, and cognitive outcomes. Early interventionists have noted an 

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encouraging research challenge - the community is taking up new approaches that are being 

proven effective so quickly that it is difficult to find "control groups" for behavioral intervention 

trials. While this can complicate efforts to conduct randomized control trials, it is encouraging 

to know that parents and community practitioners are putting innovative strategies into 

practice quickly. 

In addition to early interventions, progress is being made in developing interventions to help 

adults on the autism spectrum. A recent NIH-funded study showed that a computerized 

training program for adults with ASD who showed initial impairment in their ability to recognize 

faces, a disabling aspect of ASD for many on the spectrum, resulted in improved face 

recognition skills. 

Many of these recent advances in early diagnosis and intervention were supported through 

NIH's Autism Centers of Excellence (ACE) program, which was expanded under the Combating 

Autism Act. The ACE program was renewed in September 2012, and currently supports nine 

centers and networks at major research institutions across the country, with two additional ACE 

awards expected next year. The research conducted within the ACE program covers a variety of 

topics that are aligned with priorities identified in the lACe's Strategic Plan, including nonverbal 

ASD, genetic and environmental risk factors, possible links between ASD and other genetic 

syndromes, potential treatments, and possible reasons why ASD is more common among boys 

than girls. 

Risk Factors and Prevalence 

We do not know the causes of ASD, but very recent findings comparing identical and fraternal 

twins suggest the importance of focusing on both environmental and genetics factors. NIH and 

CDC are continuing to strengthen research investigations into possible environmental risk 

factors for autism, establishing large research networks with the capability to collect extensive 

sets of data on environmental exposures and health outcomes, and to conduct powerful 

analyses to determine which risk factors may contribute to the development of autism. 

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Population-based studies are the gold standard in epidemiology research. Large sample sizes 

and rigorous study designs allow researchers to examine many variables at once. Such 

networks, like NIH's Childhood Autism Risks from Genetics and the Environment (CHARGE) and 

Early Autism Risk Longitudinal Investigation (EARll) are utilizing data from medical records, 

interviews, questionnaires, developmental assessments, and physical exams to explore a host 

of possible risk factors, focusing heavily on factors in the environment before, during, and after 

pregnancy. It will take a few more years for these research networks to mature fully, but 

already, published findings are contributing to the understanding of environmental and genetic 

factors that may increase the risk for autism. For example, the CHARGE study has identified a 

number of possible risk factors that may potentially contribute to the development of autism, 

including: air pollution; mitochondrial dysfunction; immune dysfunction; maternal metabolic 

conditions such as obesity, diabetes, and hypertension; and maternal influenza infections and 

fever. In addition to its findings on potential risk factors, CHARGE investigators have reported 

that use of prenatal vitamins may serve as a protective factor, reducing the risk of having 

children with autism. In another study, funded by CDC and Kaiser Permanente Northern 

California, researchers showed that widely-used antidepressant medications taken during 

pregnancy may also contribute to the risk of having children with autism. Further research on 

these and other potential risk and protective factors is warranted. 

In addition to research to develop improved diagnostic tools and interventions, and to 

understand the causes of autism, interventions and supports are also are available to help 

people with autism and their families today. HRSA is helping to pave the road from research to 

practice. Through funds provided by the Combating Autism Act Initiative (CAAI), HRSA has 

invested substantially in autism interventions to improve physical and behavioral health of 

people with ASD, practitioner training, and service provision models. HRSA-funded 

investigators are examining critical questions, such as the impact of co-occurring health 

conditions in autistic individuals and the effectiveness of parent-mediated and peer-mediated 

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behavioral interventions. HRSA's health professionals' training programs are designed to 

reduce barriers to screening and diagnosis by increasing professional capacity and raising 

awareness about ASD among providers in the community. Interdisciplinary training initiatives 

targeted health care providers (psychologists, pediatricians, speech language pathologists, 

social workers, nutritionists, nurses, physical therapists, occupational therapists, geneticists and 

genetic counselors, dentists, health administrators, and others), other professionals who work 

with children (special educators, child care providers and others), and families who have 

children with ASD/developmental disorders (DD). 

In FY 2012, Congress appropriated approximately $47 million to HRSA for activities associated 

with autism and other developmental disorders. This funding supports: 43 Leadership 

Education in Neurodevelopmental Disabilities (LEND) interdisciplinary training programs, 

providing services and training to 41 States, with many extensive training and services across 

multiple States, further extending the reach of the LEND training programs. The funding also 

supported 10 Developmental-Behavioral Pediatrics (DBP) training programs; three research 

networks and 14 autism intervention research projects examining areas of particular interest to 

families and addressing the needs of underserved populations; 13 State demonstration grants; 

two resource centers; and a national evaluation. All activities continue to be coordinated with 

the CDC's activities and with priorities of the IACC. 

Highlights of HRSA Investments 

Reducing Barriers: Reported increases in the number of children who received diagnostic 

evaluations over the course of the grant period provide an early indication of progress toward 

the goal of reducing barriers to ASD services. Including those who received diagnostic 

evaluations from a CAAI-supported LEND program in grant year 2008-2009, nearly 92,000 

children were evaluated over the 3-year grant period. 

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Interdisciplinary Training: To address the shortage of health care professionals who are 

qualified to provide screening and diagnostic evaluation for ASD and other DDs, the LEND and 

DBP programs expanded their training resources and assisted local agencies and practices in 

building their capacity to provide community-based ASD services. During the 2009-2010 grant 

year, the LEND and DBP programs collectively trained close to 2,500 medium-term trainees 

(40-299 hours of training) and 1,400 long-term trainees (300 or more hours of training), with 

increases of 13 percent and 22 percent respectively during the 2010-2011 grant year. 

Intervention Research: To improve the health and well-being of children with ASD, research 

grantees conducted studies addressing such topics as the efficacy of ASD interventions, early 

identification of ASD in minority populations, family well-being and transition to adult services, 

and developed consensus-based guidelines to support professionals in providing treatment for 

children with ASD. Together, research grantees developed eight medical guidelines, one 

comprehensive guideline report, 14 toolkits for providers and parents to use in monitoring and 

managing ASD symptoms, and seven new behavioral measures for assessing a child's progress. 

Public-Private Partnerships 

In all of the autism research and services activities discussed, interagency coordination and 

public input facilitated by the IACC have played an important role. While I have described in 

brief some of the autism-related research and services activities undertaken by Federal 

agencies, it is important to recognize the critically-important role played by private 

organizations that fund research and provide services to the autism community, and that 

government, private organizations and the public need to work closely together to succeed in 

providing the biomedical innovations, evidence-based interventions, services, and supports 

needed by the autism community. 

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Examples of joint initiatives that are moving the field forward to enhance researchers' access to 

data include NIH's National Database for Autism Research (NDAR), which is federating with 

several other autism data repositories such as the Autism Speaks' Autism Genetic Resource 

Exchange (AGRE), and the public/private-funded Interactive Autism Network (IAN). In the 

community, programs like AGRE, IAN, and the Autism Treatment Network (ATN) that involve 

direct outreach to and collaboration with the patient community are bringing together 

hundreds of researchers and clinicians with tens of thousands of people nationwide affected by 

ASD, in the search for new and improved screening tools, enhanced understanding of the 

biology of ASD and ASD risk factors, effective interventions and services that will help people 

with ASD reach their fullest potential 

FederallACC member, the Administration on Intellectual and Developmental 

Disabilities (AIDD)/ACL, with the help of non-profit organizations, including the Arc of the 

United States, the Autistic Self Advocacy Network (ASAN), and the Autism Society, is supporting 

the AutismNOW Project, an innovative dissemination network to provide access to high-quality 

resources and information on community-based services and interventions for people with ASD 

and their families. AutismNOW offers a call center, web-based clearinghouse of resources, 

twice-weekly webinars on a variety of topics related to autism, and regional events for the 

community to connect in-person. 

Conclusion 

Since the passage of the Combating Autism Act, we can see how the establishment of the IACC 

has brought a wide variety of research, services, and education expertise to a challenging area 

and has served to focus efforts across the Federal government, also fostering collaboration with 

private efforts. This remarkable effort continues to bring Federal agency representatives, 

parents, people with ASD, clinicians, scientists, and others together to work as an interactive 

team to address this critical issue. In doing so, it has produced the IACC's Strategic Plan that is 

updated annually to guide and focus Federal research efforts and catalyze public private 

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partnerships, while also providing a forum for public discussion and identification of additional 

needs from the community. With the reauthorization of the Combating Autism Act, the IACC 

has added new members to participate in the dialogue, in an effort to broaden the outreach of 

the IACC and infuse it with new perspectives. 

On the research front, we have seen some remarkable progress in understanding the 

prevalence of ASD, developing screening methods and interventions with potential to be used 

to identify and treat ASD in very young children, and understanding the risk factors that may 

contribute to the development of ASD. This research is rapidly moving toward translation into 

practical tools that can be used in the clinic and community settings to change outcomes for 

people with ASD. In this time span, Federal agencies have also coordinated efforts to enhance 

critical services programs, identify best practices to support the education, health, and 

employment needs of people on the spectrum, and develop new mechanisms and strategies to 

enable broad access to healthcare, services, and supports. 

The Combating Autism Act established the IACC to provide advice to the Secretary of HHS 

regarding matters related to ASD, to create a forum where the public could be actively involved 

in the process, and to develop a strategy to guide national research efforts. The enactment of 

CARA has supported the continuation of this work. While there has been unequivocal progress, 

much remains to be done to take gains that have been made and turn them into the foundation 

for future advances that will result in improvement in quality of life for people with ASD and 

their families. 

Again, thank you for this opportunity to provide you with testimony on this very important 

topic. 

13 
24 

Chairman ISSA. Dr. Boyle. 

STATEMENT OF COLEEN BOYLE 

Ms. BOYLE. Good afternoon, Chairman Issa, Ranking Member 

Cummings, and distinguished members of the committee. Thank 

you for the opportunity to be here today. I am Dr. Coleen Boyle. 

I’m an epidemiologist and Director of the National Center of Birth 

Defect and Developmental Disabilities at the Centers for Disease 

Control and Prevention. CDC works to keep America safe from 

health threats of all kinds. 

Our FY 2012 autism budget is about $21 million, and today I’m 

going to describe how we use those funds. 

Autism spectrum disorder, ASD, is an important public health 

concern in the United States. ASD is a group of developmental disorders characterized by unusual patterns in communication, behavior, and attention. While there’s no known cure, research is yielding innovative screen tools to detect ASD in early childhood and 

new behavioral therapies that can improve outcomes. 

CDC data indicate that more children are being identified with 

an ASD than previous years. The toll of ASD is significant and has 

profound implications for affected children and their families. CDC 

works steadfastly to alleviate this burden by tracking ASD, promoting the early identification, and addressing the unanswered 

questions through the research. 

CDC supports ASD surveillance or tracking in 12 States: Utah, 

Colorado, Arizona, Missouri, Wisconsin, North Carolina, New Jersey, Maryland, South Carolina, Arkansas, Alabama, and Georgia. 

Through our Autism and Developmental Disabilities, or ADDM, 

Network. ADDM’s goal is to draw comparable, population-based 

prevalence estimates in different sites over time. 

In March of this year, CDC released updated estimates of the 

prevalence of—from the ADDM Network, based on our 2008 data, 

indicating that 1 in 88 children had been identified with an ASD. 

This is greater than the prevalence of 1 in 10—1 in 110, released 

in 2009, based on 2006 data, and 1 in 150, released in 2007, based 

on 2002 data. While there’s no simple explanation for the increase, 

we know that it is due at least in part to improved diagnosis and 

increased recognition. 

Data from the ADDM Network provide more than just a prevalence estimate, and because of this data, we know that ASD remains nearly five times more common in boys than girls. We know 

that the largest increase over time are among Hispanic and African-American children and children without intellectual disability. 

We know that the prevalence varies widely, the identified prevalence varies widely, from 1 in 210 to 1 in 147, and that although 

more children are being diagnosed at earlier ages, there are far too 

many that are not diagnosed until it’s too late to receive the full 

benefit of early services. 

Overall it’s clear that families and children need help, and our 

data is helping to provide that. Research tells us that the earlier 

a child is connected to services, the greater the benefit. CDC works 

to increase early identification by offering free tools and assistance 

to States through our ‘‘Learn the Signs. Act Early.’’ program. We 

provide these tools to healthcare professionals, childcare providers, 

25 

and parents, with a focus on minority and economically disadvantaged populations. 

CDC is also working with our Federal partners to provide national goals in early screening, diagnosis, and service enrollment, 

giving communities as well as the Federal Government a benchmark to measure progress. 

To identify causes of ASD, we must first understand the risk factors. CDC’s Study to Explore Early Development is the largest epidemiologic study of ASD in the country, and it involves sites in 

Georgia, North Carolina, Massachusetts, Iowa, California, and 

Pennsylvania. 

CDC works to identify factors that put children at risk, including 

genetics, environmental, maternal health, and behavioral factors, 

with a special emphasis on the interaction between environment 

and genetic factors. 

We are an active member in the Autism Coordinating Committee, and we really provide that epidemiologic and public health 

perspective. 

CDC contributes to the development of the IACC Strategic Plan 

for Autism Research, and our activities are key components of that 

plan. 

ASD is an important and an immediate public health concern. 

More children than ever are being identified, and families and communities are struggling with the financial burdens, the complex 

healthcare decisions, and the service needs. We know it is frustrating to have more questions than answers, and we share that 

frustration and are committed to improving our understanding of 

what is putting our children at risk. 

CDC will continue to document the burden of ASD in States 

through our ADDM Network; develop resources and help States 

improve early identification through our ‘‘Learn the Signs. Act 

Early.’’ program; and maintain our important epidemiologic focus 

through the SEED research network to understand why some children are more likely to develop autism. 

Thank you for the opportunity to present this testimony, and I’d 

be happy to answer questions. 

[Prepared statement of Ms. Boyle follows:] 

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Testimony before the 

Committee on Oversight and Government 

Reform 

United States House of Representatives 

Autism Spectrum Disorder 

Coleen A. Boyle, Ph.D. 

Director, National Center on Birth Defects and Developmental 

Disabilities 

Centers for Disease Control and Prevention 

U.S. Department of Health and Human Services 

For Release upon Delivery 

Thursday, November 22, 2012 

Expected at 2:00 p.m. 
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Insert offset folio 15 here 80405.015

Good afternoon Chairman Issa, Ranking Member Cummings, and distinguished members of the 

Committee. Thank you for the opportunity to be here today. I am Dr. Coleen Boyle, Director of the 

National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease 

Control and Prevention (CDC). CDC continually works to keep America safe from health threats of all 

kinds. The Budget includes $21.265 million in FY 2012 for CDC's autism work. Today, I will focus my 

remarks on how CDC uses those funds in our autism portfolio and on CDC's role on the Interagency 

Autism Coordinating Committee (lACC). 

Introduction 

Autism Spectrum Disorder (ASD) continues to be an important public health concern in the United 

States and around the world. ASD is a group of developmental disorders characterized by unusual 

patterns in a person's communication, behavior, and interactions with others. Symptoms of ASD are 

usually present after a child's first birthday, but before three years of age, and can be identified by 

observing a child's behavior and development. While there is currently no known medication or 

treatment to cure ASD, intensive research efforts are yielding progress on the development of 

innovative screening tools that can be used to detect ASD in early childhood and behavioral therapies 

that can improve cognitive function and social development in children and adults with ASD. 

Data from CDC indicate that more children are being identified with ASD than in previous years, though 

many of these children are not being identified as early as they could be. The emotional toll on families 

and communities is staggering, and the economic burden can be significant. Because ofthe long-term 

effects of ASD, the lack of a known cause or cure, costs, and concerns about the increasing identified 

prevalence, ASD have profound implications for affected children, families, educators, healthcare 

professionals, local and national organizations, and the Federal Government. 

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CDC is supporting communities by tracking ASD, helping families through early identification efforts, and 

addressing unanswered questions through research into the risk and protective factors associated with 

autism. 

Supporting communities by tracking ASD 

To better understand the prevalence of ASD in the United States, and to gain insights into potential 

causes, CDC expanded surveillance of autism and developmental disabilities in additional geographic 

areas of the United States. CDC now supports surveillance programs in 12 States: Utah, Colorado, 

Arizona, Missouri, Wisconsin, North Carolina, New Jersey, Maryland, South Carolina, Arkansas, Alabama, 

and Georgia. This collaborative body, known as the Autism Developmental Disabilities Monitoring 

(ADDM) Network, seeks to develop or improve programs that track the number of children with ASD in 

their States. The goal of the ADDM Network is to provide comparable, population-based estimates of 

the prevalence rates of autism and related disorders in different sites over time. 

In March 2012, CDC released updated estimates of prevalence from the ADDM Network (the third 

report in a continuing series of reports) indicating that 1 in 88 children had been identified with an ASD. 

This number compares with an identified prevalence of 1 in 110 in 2009, estimated using data from 

surveillance year 2006. In 2007, we reported a rate of 1 in 150 children, based on data from 2002. 

While there is no simple explanation for the increase, we know that it is due in part to improved 

methods for identification and diagnosis, and to increased public awareness partly resulting from the 

expansion of behavioral health services in local communities. However, we do not know exactly how 

much ofthe increase is due to these factors. To better understand the causes of the increase, we need 

to continue tracking ASD and continue working with our colleagues at NIH and in the broader scientific 

community to improve identification of risks and protective factors associated with autism. 

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Based on the methods we use for tracking autism, we know more than just how many children have 

ASD. For example, we know that ASD remains nearly five times more common among boys than girls. 

We also know that the largest increases in identified prevalence over time were among Hispanic, 

African-American children, and children without intellectual disability. Some of the most recent 

increases can be attributed to greater awareness of ASD and improved identification of children with 

ASD within communities. However, this explanation can only account for part of the increase over time, 

since more children were identified with ASD among all racial and ethnic groups and at all levels of 

intellectual ability. 

In the 2008 reporting cycle, we also saw more variation in prevalence estimates across sites than in 

previous years, fluctuating anywhere from 1 in 210 to 1 in 47. We know that some of this variation is 

due to differences in the way children are identified and served in their communities. Our data also 

show that more children are being diagnosed at earlier ages, which is a positive trend because ofthe 

value of early intervention. Still, most are not diagnosed until after four years of age, when it may be 

too late to receive the full benefit of early intervention services. The one thing these data tell us with 

certainty is that more children and families need help. 

Through CDC's work in tracking ASD over the past 15 years, we know more about which children are 

more likely to have ASD, at what age they are likely to be diagnosed, and we know whether progress has 

been made in early diagnosis of children with ASD. Communities need this type of information to plan 

for services and to understand where improvements can be made to help children and their families. 

4 
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Helping families through early intervention 

While we know that many individuals with ASD will need support throughout their lives, a growing body 

of research tells us that the earlier a child is identified with an ASD and connected to services, the 

greater the benefit of intervention will be to that child. And unfortunately, the data tell us that there 

are many children with ASD who are not being diagnosed as early as they could be. CDC is working hard 

to change that, offering free tools through our "Learn the Signs. Act Early." program, which aims to 

improve the early identification of children with ASD. We are putting these tools in the hands of 

healthcare profeSSionals, childcare prOViders, and parents, with a special focus on minority and 

economically disadvantaged populations. CDC is also working with States and local communities to 

improve early identification. Notably, we have worked with partners from other Federal agencies to 

develop national goals in early screening, diagnosis, and enrollment in services for children with ASD 

giving communities, for the first time, a benchmark to measure progress. 

Answering unanswered questions through research 

CDC knows that people want answers about autism, and so do we. To identify the causes of ASD, the 

scientific community first needs to better understand the risk factors for ASD. CDC's surveillance data 

serve as a guide for our autism research and for the research of other scientists across the country. At 

CDC, we are conducting the Study to Explore Early Development (SEED), which is helping to identify 

factors that put children at risk for ASD. SEED is looking at many potential risk factors including genetic, 

environmental, maternal health, and behavioral factors. One key strength of SEED is that it offers an indepth look not only into the characteristics of ASD, but also the interaction with environmental and 

genetic factors. We completed the first phase of this study in 2012 and recently began the second, 

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which we hope will ultimately help us to better understand what makes one child more or less likely to 

have an ASD. 

CDC also conducts epidemiologic studies using national survey data on children's health. These studies 

include indepth assessments of differences in ASD prevalence in various demographic subgroups, family 

impact of having a child with an ASD, and assessment of co-occuring health conditions and health care 

needs in children with autism and other developmental disabilities. We have also used ADDM 

surveillance data and survey data to assess factors that might be contributing to the observed increases 

in autism prevalence. 

ASD is one of a few conditions that have a Federal committee tasked with coordinating research efforts. 

The IACC has played a pivotal role in helping Federal agencies, non-profit organizations, and members of 

the public work together to identify priorities and strategies to address key issues of importance to the 

autism community. CDC is an active member of the IACC, providing an epidemiologic and public health 

perspective on ASD. As a member ofthe IACC, CDC seeks to engage other Federal agencies and public 

stakeholder groups and individuals in a complementary and cooperative fashion that is consistent with 

and responsive to Congressional direction and intent. CDC's work informed the development ofthe 

IACC Strategic Plan for Autism Research and CDC's autism activities are key components of this 

comprehensive plan to address ASD. 

It has become clear that there are likely several complex causes influencing what makes one child more 

likely to have an ASD than another. This is a challenging and complex disorder to unravel. While we 

search, it is important that we not lose sight ofthe many individuals, families, and communities 

struggling with ASD today. 

6 
32 


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Conclusion 

ASD is an important and immediate public health concern. More children than ever before are being 

identified with ASD. Families and communities are struggling with financial burdens, complex 

healthcare decisions, and need for services. We are bringing our collective resources to bear to 

understand what is putting our children at risk for autism. We at CDC will continue providing 

communities with essential data on the prevalence of ASD so that they can adequately plan for services 

to meet the needs of these children. We will continue developing resources that help identify children 

with ASD as early as possible so they can benefit from the early intervention services that can help them 

reach their full potential. And, we will continue the important research to better understand why some 

children are more likely to develop autism than other children. 

Thank you for the opportunity to present this testimony to you today. I would be happy to answer any 

questions. 

7 
33 

Chairman ISSA. Thank you both. 

I’m going to recognize myself first. And I’ll ask both the experts 

to forgive me for being very basic in a couple of questions, but I 

hope that it sheds a balance on this hearing. 

Dr. Boyle, as far as you know—or either of you—is autism—does 

autism in history predate all vaccines? In other words, was there 

autism before there were vaccines? 

Ms. BOYLE. I would turn to my colleague, my physician colleague, 

but I would say definitely. 

Chairman ISSA. Doctor? 

Dr. GUTTMACHER. Autism was first not described until 1943 by 

a constituent, actually, of Mr. Cummings at—Leo Kanner, who was 

a child psychiatrist at Johns Hopkins, who first noticed 11 individuals with similar patterns of behavior that he described and coined 

the term ‘‘autism’’ to describe. 

Chairman ISSA. But were those likely or documentably things we 

can look back into history—and I want you to say with certainty 

or with likelihood, because I think it’s important for all the people 

that are dealing with this question. 

Dr. GUTTMACHER. Absolutely. I know that Dr. Kanner’s view 

and, I think, others’ is that this probably existed before, just no one 

had noticed the pattern. There’s only descriptions of individuals 

from well before the immunization era who would have what we 

would take today to be autism-spectrum-type disorder. It’s not well 

documented before. I think there’s heavy suspicion that it existed 

before vaccination. 

Chairman ISSA. Okay. Now I’m going to follow up with that. 

Is it fair to say that today the state of science—and I think Dr. 

Boyle said this very well—is that autism of various types has multiple causes, in each of your opinions? 

Dr. GUTTMACHER. Absolutely. And they have both a genetic/biological basis and also an environmental basis. 

Chairman ISSA. So, again, I am trying to be very basic, and I 

apologize, but I think for all of us as we go through this, it’s important to sort of build on something. 

So it’s fair to say that autism, like cancer or like other diseases 

often, is a group of afflictions, meaning that although the characteristics may be similar, in fact, there are multiple causes and, 

thus, likely multiple treatments and/or multiple forms of prevention. 

Dr. GUTTMACHER. I think it’s not only fair to say, but I think, 

as simple as that question may be, it’s the most important question 

in some ways to ask, because it explains some of the challenge in 

trying to figure out autism, but also points the direction to do it. 

Until we can better understand the biological bases of these different forms of autism, it will make it difficult to understand any 

of them. 

Chairman ISSA. I want to ask each of you one of the toughest 

questions, and I inherit this series of hearings, but I want to inherit them new. 

Is it fair to say that we can rule nothing out in absolute terms 

from being a contributor? 

34 

You heard the gentleman from Ohio talk in terms of mercury 

coming in air form. Obviously, the former chairman spoke of the 

possibility of vaccines having a direct relationship. 

Is it fair to say that these multiple causes that we suspect, the 

fact is we can rule nothing out, including—and I’m not stating as 

a fact, I really am stating as a question—including things we 

haven’t yet looked at? Is that possible that there are yet more 

causes that will be viewed, and nothing can be ruled out? 

Dr. GUTTMACHER. It’s certainly true that those things we haven’t 

looked at yet we can’t rule out for sure. I think that there have 

been some things looked at very heavily that, while it’s always difficult for science to rule anything out as a possibility for occasional 

individuals, I think the sort of gradations of suspicion, and there’s 

some various kinds of possible factors have been looked at so carefully that we can rule them out as being involved in the vast majority of individuals. 

Chairman ISSA. I’m going to ask one last question. And I’m really 

feeling like this is so far above my head that as I continue to study 

and work with people, I’ll learn more. But one of them that wasn’t 

mentioned in either of your opening statements, but I believe is 

now under suspicion, is the age of parenting. Would either of you 

feel comfortable talking in terms of we as a society are waiting ’til 

later, both on the male and female side, to have children, and 

science is cooperating with us. Do you believe that that is an area 

that needs further study? 

Dr. GUTTMACHER. It does need further study. There is certainly 

some evidence to suggest that paternal age particularly does have 

some correlation with rate of autism. It’s clear, though, that’s not 

a factor. I can note many, many older fathers have children who 

do not have any form of autism; many younger fathers have children who do have quite frank autism. So it’s—in any given situation, it’s not, you know, the factor. But does—in a public health 

sense does it play a role? It does. 

Chairman ISSA. Thank you. 

And I apologize. I didn’t have time to ask any questions related 

to what to do with people once they are afflicted. And, quite frankly, I don’t think I’ve done enough justice to the fact that there are 

so many interest groups, each of which is fragmented into components, that I didn’t even mention here today. 

I thank the ranking member and would recognize him here for 

his questions. 

Mr. CUMMINGS. Thank you very much, Mr. Chairman. 

Just kind of following up on what the chairman just asked. You 

know, in talking to the folks behind you, there seems to be a frustration. I see everybody’s—I wish you could see them behind you. 

They’re shaking their heads. There is frustration with regard to coordination of efforts, with regard to, you know, research. 

And I guess what I—and I—I hinted in my opening statement 

that I want us to try to move towards trying to make a difference. 

I know that’s why the chairman feels, too. You know, we don’t 

know how long we’re going to be sitting on these panels and in the 

Congress, but we want to use our time effectively and efficiently. 

And what can we do to help the folks behind you get to the coordination, the kind of things that they are looking for to have an 

35 

impact, because they are thoroughly frustrated. So, I mean, can 

you help me with that? Can you help us? 

Dr. GUTTMACHER. I think we can also share your frustration. I 

think all of us are frustrated at the rate of progress in terms of 

really understanding autism, having interventions that make a difference. So we clearly share that frustration. Perhaps because 

we’re involved in it, we have, obviously, a different perspective on 

the frustration, but we not only understand that others have it, but 

do share it. 

I think in terms of what the Congress can do, I think some of 

you have already done, clearly, in terms of funding for this area, 

but also, I think, in terms of the role of the Interagency Autism Coordinating Committee in specifically the area you mention the frustration; that is, coordination. I think the IACC has done a very 

good job in its relatively few years of existence, in fact, in coordinating both work among Federal agencies, but also coordinating 

the Federal agencies and the advocacy organizations, individuals, 

and others to really try to come up with the community viewpoints 

about what should the priorities be within research; what should 

the priorities be in terms of service delivery, intervention, et cetera. 

So that I think that while there’s always room for a better coordination, I think the coordination among agencies is much better 

than it was a number of years ago. And, in fact, across other areas 

of scientific research—— 

Mr. CUMMINGS. But you also said we can do better. 

Dr. GUTTMACHER. I think we can do better, but I think we are 

doing a lot better. I would point to this as actually one of the areas 

in science where there is particularly good coordination at this 

point in time. Good enough? No. But particularly good? Yes. 

Mr. CUMMINGS. Let me ask you this: Major Federal efforts to 

confront significant health crises have been mounted in the past. 

Breast cancer, Alzheimer’s and AIDS have all been a focus of major 

efforts. How do you think the Federal effort to confront autism 

spectrum disorders compares to those other Federal efforts? 

Dr. GUTTMACHER. Well, certainly scientifically they each present 

their own challenges and their own opportunities, but different 

kinds of challenges. One of the particular ones the chairman already referred to in terms of the diversity of conditions, they are 

all lumping as one here. So I think that presents its own challenges. 

It also presents some particular coordination challenges as well. 

I think it’s hard to compare, you know, one sort of disease movement versus another. They need to all, I think, be crafted with acknowledgment of the particular qualities of the disease or diseases 

that you’re trying to approach. 

Mr. CUMMINGS. Let me ask you—yes, Dr. Boyle. 

Ms. BOYLE. I was going to say that, I mean, autism, like breast 

cancer, is a very complex, very complex issue. And although it may 

not seem that, we—with Federal dollars, we’ve made considerable 

investment in research and programs and tracking. So—and we’re 

just starting to see some of the benefit from that. We’re starting 

to see some of the research come out. 

And, I mean, there really is an explosion of information, a lot 

more to be done, particularly on the environmental perspective. A 

36 

lot more focus has been on the genetics. And I think, you know— 

and that’s been a discussion at the IACC level. We need to be moving more into the nongenetic-related aspects. 

Mr. CUMMINGS. Let me ask you this: The Interagency Autism Coordinating Committee is the tip of the spear in the Federal efforts 

to strategically address autism. Is the Committee’s ability to accomplish its mission hampered by the absence of adequate representation from both private and—and nonprofit—nonprofit sector? And would the Coordinating Committee be better positioned 

outside of NIH since treatment and services are important elements in the mission of the Committee? And then you can answer 

that, and I’m finished. 

Dr. GUTTMACHER. The newly reauthorized Committee is larger 

than its predecessor, and I think that has been an advantage to the 

Committee. It has more membership. I think like any committee it 

struggles with if you were to craft what’s the perfect membership 

of the Committee. You struggle with wanting to clearly be inclusive, at the same time making the Committee effective in terms of 

size, et cetera. 

I think that the Committee tries to make sure about the inclusion by, in fact, inviting public comment at its meetings, having 

town halls, other kinds of things, so that even those not represented directly on the Committee have a voice in the room. 

Mr. CUMMINGS. Thank you. 

Chairman ISSA. Dr. Boyle, do you have anything? 

Ms. BOYLE. No. I would agree with that, sir. 

Chairman ISSA. I thank the gentleman. 

I now ask unanimous consent that the distinguished gentleman 

from Virginia Mr. Moran be allowed to sit in this hearing. Without 

objection, so ordered. 

I now would also ask unanimous consent that Mr. Burton has 

waived 2 minutes of his 5 minutes so that he can show a video before he begins. So if the video could be shown, and then the gentleman will have 3 minutes afterwards. 

Mr. BURTON. Thank you, Mr. Chairman. 

Let me preface my remarks by saying I know there’s many 

causes of autism, but the one we’re talking about today, as far as 

I’m concerned, is the mercury in vaccinations and in the environment. And the University of Calgary in Canada has done this research, and I want everybody in the room, but particularly my colleagues, to see what the research shows. 

[Video shown.] 

Chairman ISSA. Gentleman may continue. 

Mr. BURTON. Thank you very much, Mr. Chairman. 

You know, there’s an old saying: One picture is worth a thousand 

words. 

I have read I don’t know how many studies on this whole issue, 

and I think I’ve had some of you doctors before. I think, Dr. Boyle, 

you’ve been before our committee before, when I was chairman. 

And I have great respect for you and for the FDA and HHS. I think 

you do a great job. But sometimes I think maybe outside influences 

have too great an impact on the scientific research that’s necessary 

to find cures for major problems. 

37 

Now, we’ve gone from 1 in 10,000 children known to be autistic 

to 1 in 88. It is worse than an epidemic; it is an absolute disaster. 

And how anybody can look at that study and see the actual brain 

cells deteriorating when put next to a very small, minute amount 

of mercury, it mystifies me. How can anybody at the CDC and the 

FDA watch something like that and say that the mercury does not 

have an impact on neurological problems? 

Now, granted, it may be from other things besides vaccinations, 

but vaccinations that contain mercury should not under any circumstances be injected into any human being, especially children, 

who have a very fragile immune system. And children get as many 

as 28 or 30 shots before they go to the first grade. My grandson 

got nine shots in 1 day, and it turned him into a horrible situation 

that we found banging his head against the wall, couldn’t go to the 

bathroom, all kinds of things. These people will tell you all about 

that. 

So all I would—I would pray to you, beg you to go back to FDA 

and HHS and say, come on, let’s get with it. There may be other 

causes, but let’s get mercury out of all vaccinations, which is a contributing factor. If you do that, and you can go to single-shot vials, 

it costs, what, a penny, 2 cents apiece, it won’t hurt anything. 

And I don’t mind if the pharmaceutical companies get legislation 

passed here that protects them from class-action lawsuits as long 

as they help the Vaccine Injury Compensation Fund and get mercury out of these vaccinations. 

Please. I’m leaving. I’m not going to be here anymore. You won’t 

have to watch me up here anymore. But please go back and work 

on it, will you? 

Thank you. 

Chairman ISSA. I thank the gentleman. 

And now recognize the gentlelady from the District of Columbia, 

Ms. Norton. 

Ms. NORTON. Thank you, Mr. Chairman. 

Actually, I would have liked to have heard the response, given 

how— but I don’t want to take from my time. 

Chairman ISSA. I apologize. The gentlelady is right. 

Did either of you have a response? I realize there was not an embedded question necessarily there. But if either of you want to 

make a comment on the video if you are familiar with it. It will 

be a part of the record. You could do it afterwards. But if you had 

a comment now, we would certainly welcome it. 

Ms. BOYLE. Well, I would be happy to make a comment about the 

vaccines themselves. So, since 2001, thimerosal has been removed 

from all vaccines given to children, with the exception of a—— 

Chairman ISSA. Please. We said that the record will remain open 

for all comments, including ones you may want to make as a result 

of this, so you will have an opportunity to voice yourself completely. 

Please, Dr. Boyle. 

Ms. BOYLE. As I say, with the exception of the multi-vial flu vaccine. 

Chairman ISSA. Thank you. 

The gentlelady may begin. 

Ms. NORTON. Thank you, Mr. Chairman. 

38 

I have a couple of questions that really have to do with just who 

we are talking about. 

It would probably be the case that many, many of these children 

who may have some features of autism were not recognized early. 

And you indicated how difficult it is to backtrack and do something 

about it. So I assume that there are millions of people walking 

around or not. 

Now, where we do recognize what is seen as a disability, the 

IDEA says there must be services provided in school and the rest 

now. So a child might be able to get, I don’t know, all matter of 

services, services relating to speech and to movement, very primary 

services. Then this person graduates out of school, where there is 

no IDEA. What does—so I have to assume that there must be parents and relatives with such children who are not recognized, got 

whom nothing was done. What are we doing about these young 

people or older who have not had any services? Do they have anything like IDEA available to them, any services that they automatically qualify for? If not, what do we do with them. 

Ms. BOYLE. I think that is a real challenge. This topic about understanding transition from childhood to adult and sort of the services associated, the benefits, the impact of autism across the lifespan is really important. 

Ms. NORTON. But my question goes to what do we do to the child 

who is no longer a child, 18 or 19, the mother and father have done 

all they could? This is an adult children; these may be aging parents. What does that young person do? 

Dr. Guttmacher. 

Dr. GUTTMACHER. I think, Congresswoman, it is clearly a real 

challenge for our society. And as you well know, your historic interest and support for the Down Syndrome Caucus, many of the 

issues you are bringing up here as applied to autism are extremely 

similar, if not identical, to those for children who have become 

adults with any kind of disability. 

Ms. NORTON. Except that we can recognize Down syndrome. 

Dr. GUTTMACHER. Exactly. So that is clearly an advantage of 

having been diagnosed earlier in life and getting services. 

Ms. NORTON. What are we doing with these young people, Doctor? 

Dr. GUTTMACHER. Well, the first thing we are trying to do is to 

diagnose more effectively early on. 

Ms. NORTON. No, I want to know today. You have such a person; 

they weren’t diagnosed effectively, who is 21 years old. What do I 

as a parent do with this young person? 

Dr. GUTTMACHER. Well, the first question is even if it is recognized at the age of 21, often individuals who we would now describe as being on the ASD spectrum or simply seeing their families having particular character traits or whatever and are never, 

quote-unquote, diagnosed, I think the question for any of these, for 

parents of young adults and for the young adults themselves, is 

trying to find the best fit in society in terms of employment, et 

cetera. 

Ms. NORTON. Thank you, Doctor. I have one more question and 

my time is running out. In other words, there is nothing that we 

are doing to them. It looks like we don’t have any mandated servVerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00042 Fmt 6633 Sfmt 6633 C:\DOCS\80405.TXT APRIL
39 

ices for them and that it falls—that the Affordable Health Care Act 

may help to provide some medical services. But this is tragic if we 

have not found—not a bridge but a way to accommodate an adult 

who may still become a functioning member in some way in society. 

But this is the question, before my time runs out. I have often 

noticed that parents of highly educated people come forward and 

speak up for Down syndrome, middle-class parents. Why is that? 

Is there a difference in who recognizes? Is there a difference in who 

gets it, an ethnic difference, a class difference in who gets or recognizes this disease or this condition, or is it an across-the-board condition. 

Dr. GUTTMACHER. It is an across-the-board condition. There 

clearly are issues, again, because it is not always diagnosed. Those 

that have greater access to higher quality medical care, since it is 

usually a medical diagnosis that is made, tend to have the diagnosis made more frequently. So those who, for various reasons, of 

barriers to access are less likely to have the diagnosis. 

Ms. NORTON. What is the minimum age that we should be looking to, if we have a child, to see whether autism is perhaps there? 

Dr. GUTTMACHER. As I mentioned in my testimony, there is now 

a checklist approach that is being used right around 1 year of age 

in the hope to make the diagnosis at that point. And we hope eventually even younger. The younger we can make it, the better. 

Ms. NORTON. Thank you, Mr. Chairman. 

Chairman ISSA. Thank you. 

Dr. Boyle, I think you had an additional statement. 

Ms. BOYLE. Well, a couple points on that last one. So we do have 

tools to help parents identify children as early as possible. Those 

are free. They are on our Web site. And the most important thing 

that parents—— 

Ms. NORTON. They know it. The mother knows it; the father 

knows it. It is, what is available? 

Ms. BOYLE. We have information about what to do with it, how 

to have a conversation with your physician, so really guiding parents with that. 

Ms. NORTON. Thank you, Mr. Chairman. 

In other words, it is up to the family to try to figure it out. 

Chairman ISSA. I thank the gentlelady. 

And thank God that there are families who care so much, and 

that is always a big part of it. 

With that, we go to our first doctor on the panel, Dr. Gosar, for 

5 minutes. 

Mr. GOSAR. Thank you, Mr. Chairman. First of all, I would like 

to acknowledge my colleague, Mr. Burton, for making this instrumental and representing so many people out there. 

One of the things I wanted to ask, Dr. Boyle, in your testimony, 

is I didn’t hear a prevalence about diet. 

Ms. BOYLE. Excuse me? 

Mr. GOSAR. I didn’t hear a pertinent aspect of focusing on diet. 

Ms. BOYLE. Diet. So we do, within the context of our epidemiologic study, we do a ask about information about diet. 

Mr. GOSAR. It seems to me in the coordination—and I see the 

frustration. I was a practicing dentist for 25 years. I am also celiac 

sprue, by the way, so I can understand their frustration. It is morVerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00043 Fmt 6633 Sfmt 6633 C:\DOCS\80405.TXT APRIL
40 

tifying. When you try to go for studies, I mean, the coordination of 

studies is inherently poor, absolutely horrible, I mean, even as recently as last year. 

But we have people that are so motivated in these families. You 

know, when I would give post-ops to families, you would get about 

twice the support. With autistic families, they are begging for more 

support. I mean, you are getting tenfold heuristic type of aptitude 

in findings. And I am finding more from them than I am from the 

medical research. And it seems to me we are focusing something 

wrong here. 

We should be focusing on the family. They are telling you what 

is going on. And they are frustrated because the research is cylindrical. They are not sharing; they are not coordinating at all. And 

they are telling you what is going on and what is wrong. And we 

should be focusing on the family and utilizing that as a coordinating factor. 

Now, I want to get back to diets. You know I have got family history with this and the genetic factoring. You know, we got to spend 

more time looking at the genetics, because there is a trigger mechanism. And celiac sprue is one of those. Looking at casein as well. 

There are so many things. You cannot point to me to a disease factor, point to one of them, I dare you, and we will find a dietary 

problem with it. I mean, diabetes, heart disease, I mean, thyroid 

conditions, you name them, MS, you are going to find a dietary aspect. 

So part of the problem we ought to be focusing on is the dietary 

aspects. In aspects—to my colleague from D.C., is we ought to be 

looking at, how do we help parents in a dietary format? This is 

what my experience was. I spent every night after my practice 

closed going through aisles in a grocery store looking at everything 

on the aisle to make sure it didn’t have a gluten or wheat. Do you 

know how long that took? It is unbelievable what these people have 

to do, absolutely unbelievable. And we got researchers who don’t 

listen to them. To me this is just absolutely incredible. And I think 

it is a slap in the face for these people to be looking at those aspects. 

And here is how effluent it was: One of my siblings has a son 

they said was autistic. Thank God one of my sisters is a physician. 

In going through this tirade, we found out that she had celiac 

sprue. And she wondered, I wonder if this is the problem for her 

son. Isn’t it interesting, we had a kid who was diagnosed or labeled 

as autistic, that as soon as we took him off of wheat, gluten, and 

milk products, this kid sits, reads, does everything appropriately. 

And I think we can manage this practice a little differently. 

Sometimes we are in the forest, and we don’t even understand 

what we are looking in the trees, is manage these disease processes 

by family, by looking at that as our core group, and then start listening to people, asking a question. That is what we as physicians 

were taught to do, is ask questions and listen. And I think that is 

part of the biggest problem that we see in this research aspect, is 

we are not listening. 

And I think I see that frustration all over your face. I mean, Holy 

Cow, the genetic aspect. Just to give you an example, you know, 

we were scheduled to be part of a genetic study for celiac sprue, 

41 

which is inherently a big process to autism. There are 10 kids in 

my family. Out of the all the grandkids, out of the 17 grandkids, 

13 have celiac sprue. You would think you would use our family, 

you would think. Boy, sad excuse we didn’t. So we are missing the 

boat here, and we need to have better coordination, much better 

than what I am seeing here currently, so thank you. 

Chairman ISSA. The gentlewoman yields back. 

Now, I appreciate that this is a hearing that many have waited 

a long time for and that it is popular, but I would ask please that 

we neither have the positive nor the negative from here forward if 

possible. 

And with that, we go to the gentleman from Ohio, Mr. Kucinich, 

for 5 minutes. 

Mr. KUCINICH. Thank you very much, Mr. Chairman. 

In preparing for this hearing, I was looking at some interesting 

studies and some information to follow up on questions of the relationship between autism and environmental mercury, namely mercury that is airborne as a result of the combustion of coal. 

The United Nations environment program, in a piece called 

‘‘Mercury Control from Coal Combustion,’’ says the burning of coal 

is the single largest anthropogenic source of mercury air emissions, 

having more than tripled since 1970. Coal burning for power generation is increasing alongside economic growth. The releases from 

power plants and industrial boilers represent today roughly a quarter of the mercury releases to the atmosphere. This is from a report 

called ‘‘Mercury Control from Coal Combustion.’’ 

There was a report, actually a study, that was done by the University of Texas Health Science Center that showed what is called 

a statistically significant link between pounds of industrial release 

of mercury and increased autism rates. The study pointed out that 

community autism prevalence was reduced by 1 to 2 percent with 

each 10 miles of distance from the pollution source. 

Now, the background of this study was that during the time period studied by the Texas team, they quoted the USCPA estimating 

environmental mercury releases at 158 million tons annually nationwide in the late 1990s. I am waiting for more updated figures, 

but it is probably even greater than that. 

Dr. Guttmacher and Dr. Boyle, when will—first of all, Dr. 

Guttmacher, are you aware of any studies other than this Texas 

study that has created a link between neurotoxic chemicals and the 

environment and increased rates of autism? 

Dr. GUTTMACHER. I am certainly aware of other studies. 

Look, for instance, the one I mentioned earlier that was just published in the last week looking, for instance, at auto emissions and 

proximate auto emissions in pregnancy and early in life as a factor 

in terms of a causal relationship, who knows, but clearly an association between that exposure and autism rates. 

Mr. KUCINICH. But they have probably gone down since you have 

had catalytic converters. 

Dr. GUTTMACHER. Presumably. 

Mr. KUCINICH. I am speaking of coal-burning power plants, 

which are being used and have been used in great frequency over 

the last couple of decades. Now, are you aware—— 

42 

Dr. GUTTMACHER. I certainly do not know all of the studies in the 

autism literature. I would be happy to look into that and provide 

additional information for the record. 

Mr. KUCINICH. Dr. Boyle. 

Ms. BOYLE. Other than the one from Texas that you are referring 

to from a couple years ago, I am not sure if there is another 

ecologic study like that. There have been a number of environmental studies that are at the individual level but not at the sort 

of population ecologic level. 

Mr. KUCINICH. Well, it seems to me that if not in this Congress, 

the next Congress, that it would be timely given the fact that this 

issue is out there and the amount of coal that has been burned in 

the last couple of decades, that a study be funded, that we actually 

look at it and determine whether or not the University of Texas 

study is confirmed or disconfirmed. 

The points of this study talk about, of course, exposure, 

neurodevelopment, the pace of neurodevelopment, vulnerability 

with respect to age and also developmental vulnerabilities that 

begin with pregnant mothers. Of course, genetic susceptibility, as 

you pointed out—you know, Dr. Gosar pointed out—that is always 

a factor. But now we know that the amount of emissions may be 

a factor. That is one of the things that is posited by this University 

of Texas study. 

So, Mr. Chairman, as we move forward with this, because there 

is inevitably an amount of work that has to be done here that goes 

way beyond the politics and goes to pure science or to science, that 

I think it would be helpful for us to, for the Congress to back a 

study that would determine once and for all whether the degree to 

which autism is linked to mercury-releasing sources, specifically 

the burning of coal and with respect to the University of Texas 

study, the amount of emissions and the proximity of those emissions. 

And I just want to say in conclusion that all these families who 

are here, you have Members of Congress on both sides of the aisle 

who are dedicated to trying to find out what is going on here and 

to try to do it in the interest of your family and future generations 

as well, so thank you for your presence here. 

Chairman ISSA. And thank you, Mr. Kucinich. 

We now go to the gentleman from Pennsylvania, Mr. Meehan. 

Mr. MEEHAN. Thank you, Mr. Chairman. 

And I would like to thank Drs. Boyle and Guttmacher for being 

here today. 

Let me just start my commentary by saying that as a first-term 

congressman we are often impacted by issues that are brought to 

our attention by the constituents we serve. I can tell you that I 

don’t know of another issue that has affected more of my constituents that have demonstrated a greater degree of frustration than 

this particular issue. And so it is new to me, and I am listening 

to your testimony. But let me ask a question. I know that we saw 

you studied this in 2007. We saw 1 in 150 children so diagnosed. 

And then, in 2009, 1 in 110. And now we have diagnosed 1 in 88. 

So just in a short period of time—and 1 in 54 boys—have you ever 

seen anything in which there has been such a dramatic progression 

43 

in the incidence of diagnosis in a 6-year period in your experience 

with the CDC? 

Ms. BOYLE. Well, most of my experience actually has been within 

the context of developmental disabilities. And we do look at trends 

and other developmental disabilities. 

Mr. MEEHAN. Has anything had a trend with this kind of accelerating pace? 

Ms. BOYLE. Actually, there is a paper published a couple months 

ago looking at trends of all developmental disabilities, and the only 

one that showed an increase was attention deficit hyperactivity disorder. 

Mr. MEEHAN. I am talking, at the CDC, we deal with a broad variety of health crises at certain points in time. Has anything accelerated in your experience to this degree in a 6-year period? 

Ms. BOYLE. Well, again, relative to my area of expertise. 

Mr. MEEHAN. How about in general? You are in the CDC. What 

do you know about in general? 

Ms. BOYLE. Right. Well, again, thinking specifically about what 

is going on with autism, we have been looking at trends over time. 

And as you point out there has been an increase. We do know that 

some of that increase is due to how children are identified and diagnosed in the community so there have been changes over time 

that contribute in part. Our system monitors the number of children. We don’t have all of the information about what is happening 

in the context that influences how children are identified. 

Mr. MEEHAN. I guess what I am saying is, and these are your 

words not mine, as we have seen this remarkable acceleration just 

in the diagnoses, and in your words, it was, this is a public health 

concern. Would you explain to me why this is not a public health 

crisis, why this isn’t an issue that is on the front burner of the 

CDC every day? 

Ms. BOYLE. This is a very important issue to the CDC, and we 

are using the strengths of CDC to approach this issue. We are 

monitoring—what CDC does in its excellence is basically tracking 

and monitoring epidemiologic research and prevention. 

Mr. MEEHAN. Dr. Boyle, thank you. 

Because I know what you are saying is you are supporting. 

Dr. Guttmacher, the facts are clear; this has been accelerating at 

a remarkable pace, at least in terms of the diagnoses. What is 

being done to have a genuine comprehensive plan in which we are 

looking for accountability year to year on the progress that is being 

made in terms of what we are doing to better understand this 

issue. 

Dr. GUTTMACHER. That is a very important question, Congressman. I think part of it again goes back to the IACC having been 

created and asking for it to every year come up with an updated 

plan. I can tell you based, I haven’t checked my emails in the last 

couple of hours, obviously, but based upon simply the flurry of activity over the last few days alone, there really is work among—— 

Mr. MEEHAN. Flurry because of our hearing. 

Dr. GUTTMACHER. No, no, no. Because it is that time of year 

where we are aware that the year is coming to a close and really 

trying to put together this year’s plan in a very thoughtful way. 

44 

Mr. MEEHAN. Who is in charge of this? Who wakes up in the 

morning and says, this is my priority, I am going to drive this train 

and make sure something happens today? Who is in charge of it? 

Dr. GUTTMACHER. I would say there are a number of people that 

are doing it. The head of the IACC is Dr. Thomas Insel, who is the 

director of the National Institute of Mental Health at NIH. But 

there are multiple. And again, I think it shows. You asked about 

how important is this to CDC. It is very important. I know how it 

is important. I can tell you to NIH, it is extremely important to 

NIH, and that is why, in fact, there are a number of institutes at 

the NIH that include autism as part of their research portfolio. 

Mr. MEEHAN. What does it take for us to develop a comprehensive national strategy with real accountability and timelines? 

Dr. GUTTMACHER. I would say that, again, the IACC in many 

ways accomplishes that. If you think that that is lacking, then I 

would think it is a question really for the Congress to figure out 

how best to put that together. Because, clearly, as I think the hearing appropriately reflects, there are a lot of medical issues here. 

But there are a lot of issues about the lives of those who have autism that have nothing to do directly with medicine per se. 

Mr. MEEHAN. I get that. But where is the dynamism in which 

that emerging evidence is being challenged and being used in a dynamic concept to hurry to a discovery, at least an advance in this, 

as opposed to what may be just sort of a, I hate to say it, and there 

are so many different aspects, but as an outside observer, I see it 

as being sort of willy-nilly, and this is the next thing that gets 

funded today, and somebody tomorrow, as opposed to a real focus 

on a critical path. 

Dr. GUTTMACHER. Again, I think that there are multiple parties 

involved in this who are really quite concerned about this, who 

work in a regular way to try to advance this. Frustration absolutely is there, absolutely understandable. But as Dr. Boyle said, 

I think in fact in recent years, we have seen clearly acceleration 

in progress in this. Is it sufficient? No. Is it accelerating? Yes. 

Mr. MEEHAN. We have seen it accelerated in diagnoses, so we 

need to have the same intensity I believe. 

Mr. KELLY. [presiding.] Your time is expired. 

Mr. MEEHAN. Thank you, Mr. Chairman. 

I yield back. 

Mr. KELLY. The chair at this time would ask unanimous consent 

that our colleague from Florida, Congressman Vern Buchanan, be 

allowed to participate in today’s hearing. 

Without objection, so ordered. Glad to have you aboard, Congressman. 

Now, my friend from Massachusetts, Mr. Tierney. 

Mr. TIERNEY. Thank you, Mr. Chairman. 

I appreciate that. Thank you for our witnesses and all of the 

folks that are taking the time to be here today as well. I did want 

to start by just addressing a concern that my colleague Ms. Norton 

had with what can we possibly do for those children that are aging 

out, so to speak, of the services on that. We did have a Higher Education Opportunity Act a couple of years ago, a provision that was 

carried in the House, and Senator Kennedy carried it in the Senate, for colleges and community colleges to address programs in 

45 

sustainability for at least those on the spectrum that were able to 

be addressed and be helped by that. Unfortunately, in the next 

iteration of the budget, it didn’t get funded again. But I think we 

can all put some attention on that and deal with some families at 

least on that, helping people have that ability. And I would look 

for others on this subcommittee that might feel that that is worthwhile pursuing on that, and we can do that again and perfect it a 

little better please. 

Dr. Boyle,you mentioned in answer to Mr. Burton’s question that 

since 2000, that thimerosal was removed from all of the vaccines 

except the multi-vial for vaccines on that basis. Can you answer me 

why just as a matter of precaution to eliminate that whole issue, 

it isn’t removed from them as well? 

Ms. BOYLE. I should have said since 2001. And I am not a vaccine expert, but my understanding, and I will clarify for the record 

about this, is that the multi-use vials are used—are needed in certain context from an international or a global perspective, but I will 

clarify that for you. 

Mr. TIERNEY. If you would, just because why is it a necessity 

that they are used everything, and it could be diminished in some 

way and substituted with others, and anything on that basis I 

think would be helpful on that. 

Also, to either or both of you on that, is there a differentiation 

between incidence of diagnosed autism in other countries opposed 

to the United States? Is it region specific, or are there other concerns like that, or is it generally the same pervasiveness throughout? 

Ms. BOYLE. So in most developed countries that do have data on 

autism, the prevalence has been comparable, about 1 percent. 

There was a recent study that was supported by Autism Speaks in 

South Korea that showed a much higher prevalence, a 2.6, or 1 in 

38, for a prevalence. That was done very differently. It was a community screening program or a study versus a different method 

that we use here in the U.S. 

I do want to mention one thing though within the context of our 

monitoring network here in the U.S. The prevalence varies considerably, so there are some States that have comparable prevalence 

rates to that South Korea study. 

Mr. TIERNEY. So what are we doing to try to determine? If there 

are higher rates in some States or some parts of some States than 

others, are there a good number of studies going on to find out 

what is different about the environment in those areas than others, 

and how is that all being determined and coming out? What are 

the outcomes of those studies? 

Ms. BOYLE. So a monitoring network continues to track the prevalence. We are trying to identify children at a younger age so we 

have a component to identify children at age 4. We are doing studies to try to understand what is impacting that prevalence rate, 

both from a community perspective, understanding how children 

are identified and diagnosed in the community, as well as changes 

in risk factors and modeling how those changes in risk factors over 

time might have influenced the rate. 

Mr. TIERNEY. So my colleague was talking about diet and other 

family incidences like that. Is there part of this monitoring that enVerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00049 Fmt 6633 Sfmt 6633 C:\DOCS\80405.TXT APRIL
46 

tails going into an area with a very high incidence of autism diagnosis and actually interviewing those families to find out what 

might be distinctive about their experiences or their history? 

Ms. BOYLE. That is a great question. And actually, we a have a 

second research program, as well as many activities that are ongoing at the National Institutes of Health. So we have a research 

component in 6 States in the United States to do just that; to interview families, to get more detailed information from medical 

records, to compare families of children who have autism versus 

those who don’t and get a better sense of what is different. 

Mr. TIERNEY. In what stage are those studies? How far have they 

progressed? 

Ms. BOYLE. So that is called the Study to Explore Early Development. We have just completed the first phase, so we have 2,700 

families that have enrolled in that study. We have started a second 

phase, so we are now in the analytic phase of that and really hope 

to be having data come out in the next year. 

Mr. TIERNEY. And other than a geographic way of identifying 

those people, are you doing something also with minority and lowincome groups to determine why the prevalence is higher there, 

interviewing subsets of those groups? 

Ms. BOYLE. So we are incorporating—so our studies try to get everyone in the population, and to get everyone in the population is 

always challenging. But that is what epidemiology is all about; it 

is to be representative of the population so you don’t have a bias 

there. So yes. 

Mr. TIERNEY. Thank you. 

Mr. KELLY. The gentleman yields back. I now recognize myself 

for 5 minutes. 

Dr. Guttmacher, you are the only pediatrician here today. In one 

of my other roles in life right now, besides serving in Congress, I 

am also a grandfather for seven children, two little girls, one 5- 

weeks old today and one will be 4-weeks old on Sunday. So are you 

saying that somehow there is a window of the first year that parents should be looking at different behavioral activities in these 

children to maybe get an earlier idea that the child may be affected? 

Dr. GUTTMACHER. Absolutely. We do think the first year and potentially before that is crucial. It is interesting, for instance, that 

the NIH and others supported a study that was done in San Diego, 

which involved local pediatricians doing a survey of their patients, 

a quick office-based 5-minute kind of questionnaire to try to diagnose children with autism about 1 year of age to see whether this 

could be done. Not only did that study show that it could be effective, it was so convincing to the pediatricians that when the study 

was over and therefore funding was over, all of the pediatricians 

in the study elected to continue to do that in their practices because they were so convinced that this was important for their patients. 

So I think, absolutely, more and more, we want to make a diagnosis early because then we can get interventions and services to 

kids and their families in a way that we can make a difference, and 

the earlier we start them, the better the impact. 

Mr. KELLY. Dr. Boyle. 

47 

Ms. BOYLE. This is key, since we don’t know how to prevent autism and we do know there are great benefits from early identification, we want to identify children as early as possible. And CDC 

has a campaign. It is called Learn the Signs, Act Early. And it is 

really targeting parents and health care providers. And it has tools 

to really help parents as early as 3 months, 1 month, to understand 

what the appropriate developmental milestones are so your daughter, your daughter-in-law really can take advantage of those materials. 

Mr. KELLY. Well, my wife and I spend a lot of time with them 

so it would really be important, also. 

Ms. BOYLE. Yes. 

Mr. KELLY. I am always holding them and doing something with 

them. And the older ones I am reading to, I should be looking for 

things that I would never have been aware of before. Now, I do represent an area that has impoverished rural areas. And I am sure 

a lot of the members feel the same way because we don’t all represent just one group of people but a lot of people. So how are the 

people in the impoverished areas, how do they get accesses? How 

do we get to them? How do we give them the opportunity to find 

out what they need to know also? Is there a method? I keep hearing people, well, they can go online. Well, you know, the area that 

I represent, there is not a lot of people that can go online to do this. 

Ms. BOYLE. One thing I think neither Dr. Guttmacher nor I 

brought up today is we represent two agencies within the context 

of HHS. And there are others that are represented in the Interagency Autism Coordinating Committee whose voices you need to 

hear about, too. So the Health Services Resources Administration 

focuses on training physicians in rural areas to really try to target. 

And then our colleagues in the Administration on Developmental 

Disabilities also do work here. And the Department of Education. 

So there is a lot of work here, and you are just hearing really from 

the two of us. And the IACC is really trying—I know it has its 

challenges—but it is really trying to bring together all of those 

voices in the Federal Government in a coordinated way so that we 

can really help everyone really be the group that reaches out to all. 

Mr. KELLY. Doctor, do you have any follow up to that? 

Dr. GUTTMACHER. I would just say that there are various regional approaches. Before I came to the NIH a number of years 

ago, I was the only medical geneticist in the State of Vermont, 

rural area, and saw numerous families and kids with autism. And 

that was part of a regional network that tried to approach the 

questions. The particular challenges of providing both good diagnosis and good care to kids in rural areas, it is a difficult challenge, 

as it is in any area that has barriers to access, be it rural or urban. 

There are various kinds of government programs that try to do 

that. 

Mr. KELLY. And I thank you. Dr. Boyle, anything in the horizon 

at all, anything you see coming that could be a cure? 

Ms. BOYLE. Again, we have been focusing on understanding the 

preventible causes versus the cure part. 

Mr. KELLY. Well, I want to take this opportunity. Mr. Burton and 

I share an awful lot of passion for a lot of different things, but we 

are both grandparents. I have often said that if we could ever exVerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00051 Fmt 6633 Sfmt 6633 C:\DOCS\80405.TXT APRIL
48 

change and take the place of whatever it is of our children or our 

grandchildren, we would gladly do so. So I thank you. And he has 

departed again, but what a great effort. And I think Mr. Meehan 

hit the nail on the head. We will continue to pursue this as long 

as we can. You deserve an answer, and we will keep working towards that means. Okay. Right now—Mr. Lynch is not here. Mr. 

Quigley. 

Mr. Davis, you are recognized, sir, for 5 minutes. 

Mr. DAVIS. Thank you very much, Mr. Chairman. 

Although estimates vary, research on the prevalence of autism 

spectrum disorders suggests that black and white children are impacted at comparable relates with lower incidences observed among 

Latino children. Is there consensus on this data? 

Ms. BOYLE. You are correct. So our most recent data shows that 

the prevalence among African American children and white children is fairly comparable, and the Hispanic—Latinos is lower. 

Mr. DAVIS. Is it possible that lower rates among Latino children 

reflect a lack of awareness within the community, and that might 

be the reason? 

Ms. BOYLE. That could be the case. In the program I was talking 

about earlier, which was Learn the Signs, Act Early, we are actually trying to target Latino Hispanic populations working with our 

State colleagues. We have all of our materials translated into Spanish specifically to try to do that. So we are, within the context of 

the work we are doing, really trying to impact that. 

Mr. DAVIS. Dr. Guttmacher, are you in agreement? 

Dr. GUTTMACHER. I am in agreement and would bow to Dr. Boyle 

and the CDC for their expertise in this. 

Mr. DAVIS. It has been suggested that children can be diagnosed 

as early as 14-months old, giving those children and their families 

the benefit of early intervention and treatment. However, children 

of color are routinely diagnosed at a later age than their white 

counterparts. What barriers exist to early diagnosis of all children, 

and are there any socioeconomic barriers that prevent parents or 

physicians from recognizing the early signs of autism among children of color? 

Dr. GUTTMACHER. I think there are issues of access to quality 

care. Having access to longitudinal care, for instance, the pediatrician or family physician who sees the child. The same provider who 

has seen the same child over time can more easily pick up lack of 

appropriate developmental progress, et cetera, than a physician 

who is or other health care provider who has seen the child only 

for episodic care. So I think some of the questions of access, et 

cetera, no question. For a diagnosis that is principally made in the 

medical context, there are issues of access here. 

Mr. DAVIS. So if a family did not have say primary care physicians for both themselves and their children, then it is possible 

that there might be a later diagnosis than if they had this ongoing 

care all along? 

Dr. GUTTMACHER. I think it is possible. It creates—you know, 

this is—there are, obviously, many challenges to making this diagnosis earlier would have happened long ago. And this adds I think 

to the challenges for both the family and for the health care providers in doing that. 

49 

Mr. DAVIS. Let me ask this question. Once diagnosed individuals 

with autism spectrum disorders have average medical expenditures 

between four and six times greater than the rest of the population. 

The Harvard School of Public Health has estimated that it can cost 

$3.2 million to care for an individual with autism over the course 

of a lifetime. Although insurance covers some of these costs, intensive behavior therapies often paid out of pocket can cost as much 

as $60,000 per year. For families of average or limited means, that 

means that limited access will also occur to treatment. What level 

of access do low-income children have to behavior or therapeutic 

interventions before they reach school age? 

Dr. GUTTMACHER. That varies by locale certainly to some degree 

in terms of what provisions are based in the community and their 

level of availability. No question that for any family, even a family 

of great means, the challenges of appropriately caring for a child 

with autism are financial challenges along with the other challenges they represent. For those of lesser means, clearly, the financial impact can be even relatively greater. 

Mr. DAVIS. Are we making any real progress with that issue? 

Dr. GUTTMACHER. I think we are making progress. Again, it is 

frustratingly slow. But we are making progress in terms of coming 

up with more interventions that make a difference. And ideally one 

wants to have an array of options for interventions because different interventions will be more successful for one individual from 

one family than another. But also that access to them will vary, so 

that it is one of the reasons for not saying, gee, we are happy we 

have interventions, but say, instead, well, we made progress in 

interventions, but we clearly need to develop more. 

Mr. DAVIS. Thank you very much. 

I yield back, Mr. Chairman. 

Mr. KELLY. I thank the gentleman. 

The gentleman from Florida, Mr. Posey. 

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

Dr. Boyle, my predecessor, Congressman Weldon was a well respected competent medical doctor and a great deal of esoteric expertise on this subject that I will probably never have. But I glean 

from him some certainty that he felt thimerosal in vaccines definitely was a contributing factor to autism. And I read not very long 

ago an article that it said, until the wonderful people like us introduced vaccinations to Africa, the African children basically were 

autism-free. They never heard of autism, never had a case. Are you 

familiar with that? Did you ever hear that before? 

I wonder if the CDC has conducted or facilitated a study comparing vaccinated children with unvaccinated children yet? Have 

you done that? 

Ms. BOYLE. We have actually done a number of studies looking 

at the relationship between thimerosal vaccines and autism and 

other developmental disabilities. There have been—since actually 

over the last decade, there have been numerous studies looking at 

the relationship between vaccines and aspects. 

Mr. POSEY. That the CDC conducted? 

Ms. BOYLE. Some of them were conducted by the CDC; others 

were conducted by—— 

Mr. POSEY. How many would you say, would you estimate? 

50 

Ms. BOYLE. I would actually have to check with the specific numbers, but I know there were two. One large study looking at various neurodevelopmental disorders and the second one that focused 

specifically on autism. And those are fairly recent studies. 

Mr. POSEY. Would you see that my office gets a copy of those 

please? 

Ms. BOYLE. Of course. 

Mr. POSEY. Do you believe an additional study will provide useful 

data in assessing the safety of childhood vaccines? 

Ms. BOYLE. The IOM has evaluated this issue back in 2004 and 

again most recently in 2011. And you know, their conclusion, again, 

it is not just looking at the work that was done at CDC but with 

a total body of evidence, was suggesting that vaccines and their 

components did not increase the risk for autism. 

Mr. POSEY. My time is very limited here. So, clearly, definitely, 

unequivocally you have studied vaccinated versus unvaccinated? 

Ms. BOYLE. We have not studied vaccinated versus unvaccinated. 

Mr. POSEY. Okay. Never mind, so just stop there. That was the 

meaning of my question. You wasted 2 minutes of my time. 

What steps has the CDC undertaken to ensure the integrity of 

the research that was performed by Dr. Thorson, who, as you 

know, has been indicted for misconduct and misallocation of resources? 

Ms. BOYLE. So Dr. Thorson, who was a co-investigator on a couple of studies that came out on autism, was really just one investigator. And that body of evidence related to vaccines and autism. 

Mr. POSEY. Have you gone back to validate the variety of studies 

he participated in? I mean, you know this guy is a humongous 

scumbag, one of the most wanted men on earth, and you relied 

upon him for data to determine whether thimerosal had a negative 

effect. 

Ms. BOYLE. So two studies don’t conclude a body of work. The 

body of work that is relating vaccines to autism is a large collection 

of studies. 

Mr. POSEY. You told me you only had two studies related to vaccines, vaccinated and unvaccinated, so you must figure two studies 

must have some weight. I am running out of time quickly here. 

You mentioned that you only have thimerosal in multi-vial. Why is 

that? 

Ms. BOYLE. I was actually going to get that information for the 

committee. 

Mr. POSEY. Okay. Because I would think if they only have it in 

multi-vial, if they eliminated having it in all the other vials, there 

was a reason. 

Ms. BOYLE. There is definitely a reason, so I was going to clarify 

that. There are single-dose vials and multi-dose vials. 

Mr. POSEY. And they took it all out of everything but the multidose vials? 

Ms. BOYLE. That is correct. 

Mr. POSEY. How many multi-dose vials are there? 

Ms. BOYLE. I can provide you that information. 

Mr. POSEY. I have seen a chart that ranks the longevity of the 

30 nations with the best mortality rates in the world, starting with 

Iceland, Sweden, Singapore and on down. We didn’t even make the 

51 

top 30. We are the 34th. And ironically, we require more vaccinations than any other country that is healthier and has a less mortality rate than us. Do you see any correlation whatsoever, either 

one of you, to the 34th worst mortality rate and the most vaccinations to the ones with the least required vaccinations and the lowest mortality rate? They also have children that, you know, passed 

age 20 in those countries, too. 

Dr. GUTTMACHER. There are many factors, obviously, involved in 

longevity for any country. The one thing we do know about vaccinations is that they are among the major public health reasons why 

generations today live much longer than previous generations. 

They are perhaps the most successful public health movement in 

the world. 

Mr. POSEY. Nobody is talking about we are against vaccinations. 

We are talking about thimerosal in vaccinations and multiple, you 

know, bomb blast of vaccines in a short period of time on very— 

thank you, Mr. Chairman. My time is up. 

Mr. KELLY. I am sorry, the gentleman’s time is expired. 

Did you want to answer. 

Dr. GUTTMACHER. No, thank you. 

Mr. KELLY. Very good. 

The next person, the gentleman from Kentucky, Mr. Yarmuth. 

Mr. YARMUTH. Thank you very much, Mr. Chairman. 

Thanks to the panel for your testimony. Those who know me and 

now those who don’t, I wear these bracelets every day. These are 

bracelets that were the brain child of a young woman in my district, who is now 16. She has a younger brother who is autistic. She 

started at 11 raising money for research in autism by selling these 

bracelets for $3 apiece. She has now raised over $600,000. Her 

name is Michala Riggle. She has already financed a $250,000 study 

in one aspect of autism. 

And I raise that not just because I like to brag on her because 

she is an incredible person, but also to illustrate the kind of civilian activity that is going on in this field. And it is represented here 

clearly today. We are here as Representatives of the government 

trying to find out whether there is anything the government should 

be doing that we are not doing. Obviously, there have been a lot 

of concerns expressed here about frustration and the activities of 

government. 

A lot of what we can do is fund things. We do know how to spend 

money. And we do have this across-the-board cut coming up, socalled fiscal cliff, if we don’t act. We are very much dealing with 

spending priorities. Last year, we, for instance, passed a defense 

appropriation bill that allocated $2 billion more than the Defense 

Department actually requested. We still gave oil companies $4 billion a year in subsidies that they don’t say they need. So my question is, if you had another $2 billion or $4 billion, what could you 

do with it, and how would you spend it? 

Dr. GUTTMACHER. One thing I would say, before I would spend 

the dollars, is I would not want to displace the private efforts, the 

efforts that you mentioned, because I think part of the reason why 

autism research advances is the combination of Federal funding, 

but also having private organizations, advocacy organizations, who 

have research efforts as well. And often, these research efforts 

52 

are—there are many things I have mentioned already in my testimony that is supported both by Federal dollars and by private dollars. And also, of course, the important input of the families, individuals with autism, who themselves inform the research and help 

shape the research agenda. So no matter what the money, we 

should keep that partnership. 

I think in terms of money, clearly, I think, as Dr. Boyle also 

talked about, that we can see the particular scientific opportunities 

right now in terms of better understanding environmental factors. 

Many people I know have been concerned that there has been too 

much focus on genetic factors on autism. I would argue that, in 

fact, understanding those are very important for understanding the 

environmental factors, because we know it is a combination of both. 

So to figure out the combination, it is great that we better, still not 

fully, but better understand the genetic ones, so now we can focus 

more on what the environmental factors are, because after all those 

are the ones we can influence and control in terms of investments 

and, again, investments looking very early in life to better figure 

out what the etiology is. But then, also, investments in terms of 

intervention, so that we have more effective interventions and more 

options in terms of interventions. And again, I think more research 

and more work in trying to figure out how to best have an impact 

on the lives of those living with autism, both in childhood but very 

particularly in adulthood as well, so that I think there are a number of areas where we can wisely invest money. 

Mr. YARMUTH. Dr. Boyle. 

Ms. BOYLE. Thank you very much for the question. 

Mr. YARMUTH. I wish I could offer you the money. 

Ms. BOYLE. Yeah, but anyway, we do get requests all the time 

from the States, so we fund States, both to do surveillance and to 

do research. And particularly in the area of surveillance, the State 

has good knowledge about what is going on within their context, 

so they can plan for services. They can address some of the many 

issues that came up today about disparities and diagnosis among 

racial and ethnic groups. That would be one of the places we would 

really like to be able to fund more States. 

And similarly, to get answers faster, we have worked very hard 

over the last 5 years. And it is not really we. It is our academic 

and State partners who have worked very hard over the last 5 

years to develop our research base. And we are just at the cusp of 

actually being able to explore that. And more dollars would actually allow us to do work faster and to really be able to put as much 

energy into getting good answers for all of the questions that we 

heard today. 

Mr. YARMUTH. Thank you very much for your testimony. 

Mr. KELLY. Thank you. 

Mr. Smith from New Jersey. 

Mr. SMITH. Thank you, Mr. Chairman. 

And I appreciate the committee allowing me and others to sit in 

on this. And I want to thank Dan Burton for his extraordinary 

work. He is truly a champion. I sit next to him in Foreign Affairs 

and he is a great Member of Congress and a great leader on combatting autism. 

53 

Dr. Guttmacher, in your testimony, you state that since passage 

of the Combatting Autism Act, there has been a ground swell of activity suggesting, and I think unwittingly suggesting, that this has 

been about a half-dozen a year effort. 

As you may know, I introduced legislation as far back as 1997 

that became law in 2000, it is Title 1 in the Children’s Health Act, 

that establish the Centers of Excellence, the Interagency Autism 

Coordinating Committee, and really began a robust effort that continues to this day. And of course, the reauthorizations have been 

very important. 

My point is we have been at this in a comprehensive way for 

more than a dozen years, and there is a sense of impatience that 

we all have. ‘‘Frustratingly slow’’ I think was the word that was 

just used. But I want to just make a point. Resources often follow 

a demonstrable need. I know that we were able to marshal huge 

amounts of money to combat AIDS, the pandemic of AIDS. And 

Henry Hyde led the effort. George Bush, it was his idea. And we 

spent billions in combatting AIDS, particularly in Sub-Saharan Africa, because the demonstrable need was married up with the resources to try to make a difference. 

I think it hurts the effort, but we have to be accurate, when the 

1 in 88 number was first released, horrible number, terrible number. The Associated Press Mike Stobbe writes on March 29th lead, 

‘‘Autism cases are on the rise again, largely with a wider screening 

and better diagnosis, Federal health officials said Thursday.’’ 

Dr. Guttmacher, you were asked in a New York Times article 

about that question of epidemic, and you said, yes, it seems to be 

more common, but the jury is still out. The bottom line is you 

asked two questions rather than perhaps answer it. And again, you 

have got to go where the science is, and I deeply respect that. But 

it is now a couple of years later, and I would appreciate it if the 

jury is still out whether or not it is just better surveillance, especially in light of what Autism Speaks has discovered in South 

Korea. The 1 in 38 study that they funded makes it very clear that 

when you go further into a study, into the weeds in terms of asking 

the right questions, more rather than less seems to be the case. 

And I am wondering if you could comment on that South Korean 

study. 

Secondly—so jury out study, if you could speak to that. 

Africa, I chair the Africa, Global Health, Global Human Rights 

Committee. I have been working on the Foreign Affairs Committee 

for 30 of my 32 years in the U.S. House of Representatives. We 

never saw a prevalence spike like we have seen on autism in Africa 

as we have seen in the last 15 or so years. I had the first hearing 

ever on global autism. What we got back from those who testified 

was that there, and the WHO backs this up, there are probably 

tens of millions of cases of autism in Africa, Sub-Saharan Africa, 

in particular, and nobody knows why. I was in Nigeria giving a 

speech on combatting human trafficking, and a man came up and 

told me, he says you can’t believe how many children in Nigeria 

are living with autism. And of course, in a developing country, it 

is very, very hard to overcome. It is hard in this country, even 

harder there. So if you could speak to those issues. Dr. Walter 

Zahorodny, who is our principal investigator for New Jersey—he is 

54 

here today and is a very good friend, a very, very competent man. 

My question regarding New Jersey, we have the second highest 

rate. Are the other States just as high, but they haven’t done or 

the methodology has not been as keen and as effective, again, suggesting that we have a worse epidemic than some would suggest? 

Your thoughts if you would on whether or not gut flora is a contributor. We know immunity is found in the intestines. There has 

been a, I think, a nexus between the two. There is very suggestive 

research on that, that a lack of the gut flora, particularly in women 

who are pregnant, may contribute, we don’t know, to this problem. 

And finally, and I am almost out of time, but the idea of like 

with AIDS research, having an Office of AIDS Research that can 

really number out what their recommendations, put price tags to 

it, shouldn’t we have that also in our efforts to combat autism? 

Dr. GUTTMACHER. Congressman, let me try to respond to all of 

those questions. Please let me know if I haven’t responded to all 

of them. 

First of all, I assume you did not want to leave the impression 

that it has only been in the last couple of years that the IACC has 

had a role. I know that your long-term leadership of the autism coalition made sure that that was put into effect a number of years 

ago and I think has long had an impact. I was only trying to emphasize I think there has been as it has both grown in terms of 

membership and also I think gotten more experience has become 

more effective with time is what I was trying to say. 

I think in terms of the South Korean study and the 1 in 38 there 

are obviously some methodologic issues with that, but there are 

methodologic issues with almost everything. I think it is a very 

well done study. Does it show that the rate is increasing? Unfortunately, we don’t know because there was not a precursor study in 

South Korea. It would be very important and interesting to see a 

few years from now, were that repeated in South Korea with the 

same rigorous methodology, what numbers they see. Clearly, we 

know for sure that some of the increase in terms of the rates that 

CDC cites, and again I would bow to Dr. Boyle on this because she 

has more expertise, clearly we know that much of that is due to 

increased and better diagnosis, which is laudable. Whether that explains the whole thing, I don’t think that we scientifically know for 

sure. I think that there is enough of a reason to be—to some degree, obviously, this is a hugely important question. To some degree, it is not so important because, regardless of the answer, we 

know, a, that there are environmental factors at play here, and we 

need to identify them; b, we know it is a common public health 

problem, so we need to take it seriously. So regardless of whether 

the rate is increased or not, a hugely important question to answer, 

but in terms of what we do, much of what we do would be the same 

in either case. I think for instance—— 

Mr. KELLY. Doctor, the time is expired, so if you could just summarize very quickly. 

Mr. KELLY. The time has expired. 

Dr. GUTTMACHER. I think it’s important. When it’s those kinds of 

questions—in fact, we obviously know that the rate of cesarean sections is much higher than it used to be. What’s the difference between being born by cesarean section and born vaginally? One of 

55 

the big differences is exposure to gut flora. What gut flora? What 

flora colonize the gut of the infant at birth? Could that play a role? 

We don’t know. It’s one of those many environmental things that 

we should be looking into. 

Mr. KELLY. Thank you, Doctor. 

Now I recognize the gentlelady from New York. Nice to have you 

with us. 

Mrs. MALONEY. Thank you. And thank you for calling this hearing. 

Autism is becoming a growing epidemic in the United States, and 

it definitely needs to be addressed. And I want to compliment, really, Congressman Burton for his leadership. He’s not here now. I 

think—is he here?—for being the chairman of this committee and 

doing such a fine job. But you’ve really focused on this, and I think 

you’ve made some progress. And I want to thank you for your leadership on this issue and so many others, and express my gratitude 

to you and how much I’ve enjoyed working with you. 

Now, the numbers that he pointed out earlier, that it used to be 

1 in 10,000 kids got autism, it’s now 1 in 88, and I’d like to ask 

Dr. Boyle, why? And I don’t want to hear that we have better detection. We have better detection, but detection would not account 

for a job from 1 in 10,000 to 1 in 88. That is a huge, huge, huge 

jump. 

What other factors could be part of making that happen besides 

better detection? Take better detection off the table. I agree we 

have better detection, but it doesn’t account for those numbers. 

Ms. BOYLE. So just to put it in context, better detection is accounting for some of it. 

Mrs. MALONEY. I know some, but what other factors? I don’t 

want to hear—— 

Ms. BOYLE. Our surveillance program counts cases of autism and 

establishes the prevalence. It doesn’t tell us all the answers to the 

questions as to why. 

Mrs. MALONEY. Okay. 

Ms. BOYLE. So we are doing a number of studies to try to understand the ‘‘why,’’ and one of the things that we’ve looked at, we’ve 

tried to look at what’s changed in the environment, things we know 

are risk factors for autism, things like preterm birth and birth 

weight. 

Mrs. MALONEY. Well, are you looking at vaccinations? Is that 

part of your studies? 

Ms. BOYLE. Let me just finish this. 

Mrs. MALONEY. I have a question. Are you looking at vaccinations? Is that part—pardon me? 

Ms. BOYLE. So there is a large literature, as I mentioned. 

Mrs. MALONEY. Are you having a study on vaccinations and the 

fact that they’re cramming them down and having kids have nine 

at one time? Is that a cause? Do you have any studies on vaccinations? 

Ms. BOYLE. There have been a number of studies done by CDC 

on vaccinations of—— 

Mrs. MALONEY. Could you send them to the ranking member and 

the chairman here? 

Ms. BOYLE. Yes. 

56 

Mrs. MALONEY. Now, I want to tell you a story. We all react to 

our lives. And I remember people talking about hormone replacement, it’s going to save women’s lives, you’ve got to take it. Yet 

every nurse I talked to said go to the bank, it causes cancer. Every 

relative that got cancer said they got it because of the hormone replacement. 

I’m hearing the same kinds of stories on vaccination. I must have 

had 50 different parents write me or come to me and say, I had 

a healthy child, yet then they have 10, 9, 6 vaccinations at one 

time, and that child changed overnight and was knocking their 

head on the wall, and it was a changed child. In fact, I had a family in my office today where the mother broke down crying, saying, 

My child was wonderful, bright, precocious, talking. She took those 

vaccinations, and the child became very incredibly sick and has 

never recovered. So I’m interested in any studies on vaccinations 

and trying to understand that. 

Now, it used to be that you’d go and get a vaccination. My child 

never got more than three at a time. And in the State of New York, 

children are recommended to get six shots every 2 months throughout the first year of a child. 

And my question is, why does the schedule of these vaccines— 

vaccinations require a child to receive so many shots in such a 

short period of time? You could—you could—you could plan those 

shots over a period of time. 

I’m for vaccinations. They prevent disease. I’m totally for it. But 

why do you have to cram nine, six at one time when the verbal evidence seems so strong from so many people that they had a healthy 

child until they got vaccinated? 

And you’ve got to just listen, you know, to—I remember smoking. 

I was on the city council. I sat through so many hearings where 

they vowed smoking was not bad for your health. It’s common 

sense that it was bad for your health. Then finally the Surgeon 

General said it was bad for your health. 

The same thing seems to be here with the vaccinations. There’s 

too much verbal evidence coming from parents where they break 

down, I had a normal child, I gave him a vaccination, and then 

they—they became—they came down with autism. 

So it keeps to me we should—I would—I’d start spacing it out. 

Why do we have to have nine vaccinations, six vaccinations every 

2 months? Why can’t we do it over 2 or 3 years and space it and 

wait for the scientific evidence or whatever? 

Mr. KELLY. Gentlelady’s time has expired. 

Mrs. MALONEY. May she answer that question? 

Mr. KELLY. If you could—if you could summarize. 

Ms. BOYLE. Sure. There is a Federal advisory committee that determines the vaccination schedule. And the reason— and, again, 

I’ll—we’ll clarify this and get you more information, but the reason—the reason they cluster the vaccines is really to try to make 

sure that everyone gets it. People don’t—and again, we’re trying to 

make sure vaccines go to all children. And not everybody goes to 

the doctor routinely, so they use—they use that opportunity to 

make sure that happens. 

Mr. KELLY. Thank you. 

57 

The chair now recognizes the gentleman from Florida Mr. Buchanan. 

Mr. BUCHANAN. Thank you, Mr. Chairman. I also want to recognize, Congressman, for all your leadership over the years on this 

issue. A lot more work to be done, but I want to applaud you for 

that. 

Let me just focus back on the vaccines. Some of my colleagues 

have brought that up today. Is it true that we have over 40 vaccines? And I’m not against vaccines, all of them, either. But let me 

just say, because I know there’s a lot of evidence that they’re good, 

but don’t we get, like, 40-some vaccines, our children, today? Is 

that the number? I’m hearing upward of 40? 

Yeah, either of the doctors. Just out of curiosity. 

Dr. GUTTMACHER. There is exact number, and it varies somewhat. I think 40 is a little bit high. But it’s a—— 

Mr. BUCHANAN. Why would it—why would it be—just to point it 

out—why is it twice what France is, three times Finland, a lot of 

these other countries? And I know because there’s a lot of people 

that move in and out of France, a lot of diversity. I just don’t understand why our kids are getting so many shots. 

And I think of my father-in-law in a different standard just in 

terms of common sense where he’s elderly, but he’s taking eight 

pills. They found out that a lot of them have effects and impacts 

on other pills. 

And that’s why I don’t know that we’re spending enough time 

and energy looking at this, where our kids are getting twice the 

shots of everybody else. 

And I just have—you know, my sons, it seems like they’re older 

now, in their late twenties, but they might have had seven or eight. 

And I’m just going by people that I represent in our area that feel 

strongly that this has to be looked at in a very, very aggressive 

way that we are overvaccinating our children. 

Doctor, either one of you. 

Ms. BOYLE. We know vaccines save lives. There is a recent analysis that was presented at the pediatric meetings in April, and I 

actually have the numbers from that for you. It was estimated that 

42,000 lives were saved, 20 million cases of disease were prevented, 

and 13.6 billion in direct medical costs were saved. And that’s for 

each birth cohort. 

Again, there are complexities in terms of the schedule, there are 

complexities in terms of the types of vaccines, and this is all carefully thought out by an advisory committee that oversees this process. 

Mr. BUCHANAN. Have they looked at the impact—and I’m not a 

chemist or anything, but when you put all these drugs or vaccines 

into children, the impact that these various vaccines might be having, combinations? I mean, I—here’s what I get back to. We’ve got 

one in one—you know, in 2005, according to autism, it was 1 in 166 

children. Today, it’s 1 in 88. We brought that up a couple times. 

Boys, it’s 1 in 54. They’re saying 40 years ago—whether it’s true 

or not, this is what they are saying, I’d be interested in your 

thoughts—it’s up 1,000 percent. So when you look at 40 years ago, 

maybe we got 6 shots, now we are getting 40 shots, is there possibility of any correlation? 

58 

Either of you. 

Ms. BOYLE. I mentioned earlier—excuse me, I mentioned earlier 

that there is a body of evidence now, accumulated over the last 10 

years, looking at the relationship between vaccines and autism. 

And that was evaluated in 2004, again very recently in 2011, which 

didn’t support an association between vaccines and autism from a 

population perspective. 

Mr. BUCHANAN. Doctor, do you have anything to add to that? 

Dr. GUTTMACHER. I would agree she’s—that’s correct. 

Mr. BUCHANAN. Let me ask you the other thing. They’re saying 

that the person in their lifetime, the care cost is 2.3 million. Do you 

agree with that number, for autism? That’s the number I got. 

Dr. GUTTMACHER. I don’t have a specific number. I’d be happy to 

provide additional information for the record on—— 

Mr. BUCHANAN. But I think it’s 2.3 million. And they say that 

it costs the country—I didn’t realize it was to this magnitude— 

$137 billion a year annual costs, costs this country for care of autism. Do you agree with that number? 

Either of you. 

Dr. GUTTMACHER. Again, I would not have the data to agree or 

disagree. I know that it’s a high number. 

Mr. BUCHANAN. I just want to let you know we’ve got to spend 

more time and resources and fix this problem because it’s—obviously, it’s out of control. 

Thank you. I yield back. 

Mr. CUMMINGS. Mr. Chairman? 

Mr. BUCHANAN. Yes. 

Mr. CUMMINGS. Thank you very much. You know, I’m just sitting 

here, and I’m listening to all this. There’s something wrong with 

this picture. There’s something wrong. It’s—and, you know, the 

gentleman, I thought, asked some very good questions; matter of 

fact, the whole panel. 

When you’ve got this combination of shots, and you go from 1 in 

10,000 to 1 in 88, it seems to me somebody would say, wait a 

minute, let’s put the brakes on this, and at least let’s try to figure 

out whether—if I’m giving a baby nine shots in a day whether 

that—I mean, how much impact that’s having. I don’t know how 

we—I mean, it just seems logic. I mean, if they gave me nine shots, 

I would—you know, I don’t know what that—and then I know you 

said there’s a body of evidence with regard to vaccines. 

Mr. Chairman, I don’t know where we go from here, but I—we— 

I mean, it just seems to me somebody ought to say, wait a minute, 

let’s put some brakes on this. I’m not trying to say don’t deal with 

vaccines. Just look at, you know, whether the multiple-shot situation is causing this. 

And I wish you could see the people behind you. There are grown 

men that have been crying behind you, and women crying. And it’s 

just—I just—I just hope that we can—I mean, I mean, you hear the 

frustration coming from here. And I’m just sitting here saying, wait 

a minute. Seems like somebody would say, is there something, 

maybe, there is an issue here? And if we’re going to err, let’s err 

on the side of keeping children safe even if we have to, you know, 

do a pause and give one shot a day. 

And thank you very much, and thank the gentleman for yielding. 

59 

Chairman ISSA. [Presiding.] If I may take a liberty of the chair 

for a moment. It is our intention to include in future hearings—and 

the gentleman from Indiana is here—a narrow but specific request—and I put both of you, even though you may not be the witnesses—of the question of drug interactions where the FDA approves individual drugs and individual vaccines, but by definition 

does not necessarily thoroughly study interactions of any sort that 

can happen with 1, 5, 9, 20 different ones. 

That’s a different hearing, but it is one that we wanted to talk 

about, because one of the questions that we see every day, and I 

appreciate the understanding, is that both prescription drugs and 

nonprescription drugs, when interacted, do things that were not 

tested by the FDA. 

So as part of our ongoing relationship with the FDA primarily, 

that is a series of questions we expect to explore not because we 

want to further burden and slow down the approval process, but 

because ultimately that is one of the answers that we are only now 

getting more evidence that there has to be a systematic approach 

to dealing with all of what we put in our bodies. 

And Mr. Gosar, when he was here earlier, you know, talked 

about food, food being something that you can’t control. But at the 

same time, drugs have to be looked at in terms of what somebody 

may eat or drink in proximity to. So I’m not asking you for any information today, but I did want you to be aware that we have done 

a number of things with FDA, and we do intend on going down 

some path related to that, and I thank the gentleman for bringing 

it up. 

We now go to the distinguished and patient gentleman from 

Utah for 5 minutes, Mr. Matheson. 

Mr. MATHESON. Thank you, Mr. Chairman, for holding the hearing. And thank you. I’m not a member of this committee, and I appreciate your allowing me to sit in and participate today. 

Chairman ISSA. You may tell your friends that this is a committee that represents all jurisdictions of all parts of the Congress. 

So we would be loathe not to include people from the other distinguished committees that we often ask the same questions on the 

same subjects with. 

Mr. MATHESON. I certainly appreciate that, Mr. Chairman and 

Ranking Member. And I appreciate the witnesses being here today. 

We’ve heard a lot about the 1 in 88 number. I come from a State 

where it’s 1 in 47. And I’ve heard a couple of other Members ask 

questions about differences in incidence in different regions. And 

I’m one that represents a State that’s sort of at the one end of the 

scale, from Utah. 

And I’ve heard a lot about this from my constituents, and I—I’ve 

always been an advocate for responsible funding and research for 

NIH to try to figure out what’s going on with this issue. 

I’d like to ask both of you if you can tell me, based on your organizations’ research, have you been looking at these geographic disparities, where the State of Utah is 1 in 47 instead, and can you 

offer me any information that helps me understand why my State 

has a different number from the national average? 

Ms. BOYLE. I would go back to some of the comments I made earlier in that differences in how States identify and serve children. 

60 

Since our program, our tracking program, utilizes those—those 

sources, those record sources, to identify children, and that varies 

from State to State. And that—those numbers in many ways are 

a reflection of that. 

Some of our States don’t have access to education records, and 

since we were dealing with 8-year-old children or school-age children, and they’re served through IDEA and special education, that 

makes a difference as well. 

Mr. MATHESON. Can you tell me, though—I appreciate there may 

be differences in methodology, but is my State better at it? Is that 

what you are telling me? Or is there something else going on in my 

State? Has there been any conclusion to these studies that talk 

about things done differently in different States? 

Ms. BOYLE. So we—we are looking at both differences in how 

children are identified as well as differences in risk factors across 

States to try to get a better sense of that. 

Mr. MATHESON. Is there a target date when there may be a result? You say you’re looking at it now. Do we know when there 

may be some answers? 

Ms. BOYLE. Well, there are some answers. So from the report 

that we put out in 2008, what we could see is that children who 

were coming into the system were more likely to have a community 

diagnosis. So their community physicians are more likely to be 

aware of autism and coming into the system. And that’s changed 

over the 10 years that we’ve been monitoring. 

Mr. MATHESON. I understand there are differences. I’m trying to 

figure out have you validated that that is what’s—that is what’s 

going on, where there’s a 1 in 47 rate in Utah. I’m just trying to 

figure out why the number is different in my State—— 

Ms. BOYLE. One other example is we’re actually doing—we’re not 

doing, Autism Speaks is funding a special study in South Carolina. 

So using one of the ADDM sites, they’re looking in a much more 

in-depth way to see, in fact, you know, is that number in South 

Carolina low. So, again, we’re—it’s a puzzle, and we’re putting all 

the pieces of the puzzle together that way. 

Mr. MATHESON. I’m not a statistician. I just see a big difference 

in numbers. So it would be helpful if we could understand why that 

number’s different. 

In my limited time I’d like to ask one other question. Can any 

of you tell me about any new therapy approaches that are emerging for effectiveness in treating autism? 

Dr. GUTTMACHER. In terms of therapy, in terms of behavioral 

interventions and other kinds of things that are being—they’re 

emerging, that are being developed, in terms of something like a 

medical therapy, I think we’re much farther away from those kinds 

of interventions, though one would hope that eventually we would 

have those to offer as well. 

Mr. MATHESON. Thank you, Mr. Chairman. I’ll yield back. 

Chairman ISSA. I thank the gentleman. 

Would the gentleman yield his remaining time to Mr. Burton? 

Mr. MATHESON. Yes. 

Mr. BURTON. Thank you, Mr. Chairman. 

I just have one question: Why did the FDA and HHS take thimerosal out of all the children’s vaccines except just the one or two 

61 

or three? I mean, I’d just like to know why they took the thimerosal out if there was no problem and leave it in just a couple. 

Dr. GUTTMACHER. I think neither of us are vaccine experts, and 

we’d be happy to look into that and provide additional information 

for the record. 

Mr. BURTON. I would like an answer, because I think most people 

would really like to know. Thank you. 

Chairman ISSA. I thank both of you. I thank you for agreeing to 

answer that for the record. 

And by unanimous consent, I allow Mr. Posey to ask one additional question of this panel. Then we are going to go to the large 

second panel. 

Mr. POSEY. It’s to you, Mr. Chairman. In the course of answering 

this, one of the witnesses told me that the fugitive doctor had been 

involved in a couple studies with CDC, and I have information here 

that he was involved in 21 of the 24 studies. And I would like to 

submit that to the record, Mr. Chairman. 

Chairman ISSA. Without objection, so ordered. 

Chairman ISSA. Again, I’d like to thank our distinguished first 

panel. Again, we will accept additional information for the record. 

I know you’ve been in front for a long time. I might suggest that 

you take advantage of our conference room in the back and leave 

when you choose to, but if you can stay for a while and watch it 

on the monitor, it may help you in additional items for the record. 

So with that, we’re not going to—we’re going to suspend. We’re 

not going to leave the room. And if the clerk would please change 

over for the next panel so we can get started immediately. 

Chairman ISSA. Ladies and gentlemen, we really did not recess. 

So if our witnesses would now take their assigned seats. I suspect 

the second panel will take a very long time, but will be equally interesting. 

And I do want to thank all of you for your patience. This is a 

very long time for many of you to sit here. 

We now recognize our second panel, starting with Mr. Bob 

Wright, who is the cofounder of Autism Speaks. 

Mr. Scott Badesch is the president of the Autism Society. 

Mr. Mark Blaxill is a member of the board of directors of 

SafeMinds. 

And I would ask that Mr. Kelly introduce and make a short 

statement about the witness he helped bring here. 

Mr. KELLY. I thank the chairman. 

One of the great honors I have is representing northwest Pennsylvania and Mercyhurst College. Mr. McGarry, Bradley McGarry, 

is with us today. Mercyhurst is one of the leaders, if you didn’t 

know this, around the country starting in 1986 addressing these 

types of problems, and they have been the forerunner. Mr. 

McGarry has spoken all over the country about the initiatives that 

can be taken and the ability to help those with lesser degrees of 

autism to integrate into society and make great contributions. 

So, Mr. McGarry, it’s so nice to have you here and representing 

Mercyhurst. You do great things. And in 2008, your program, the 

Asperger Initiative at Mercyhurst, is one that’s being looked at all 

over the country and is the perfect model that lets us to go forward 

62 

and address some of these issues. So, Mr. McGarry, thank you so 

much for being here. 

Chairman ISSA. I thank you both. 

Mr. KELLY. I yield back, Mr. Chairman. 

Chairman ISSA. Thank you. 

And we now recognize Mr. Michael John Carley. He’s the executive director of the Global and Regional Asperger Syndrome Partnership. 

And last, but not least, we recognize Mr. Ari Ne’eman. He is the 

president of the Autistic Self Advocacy Network. 

Again, as you saw in the first panel, pursuant to the rules of this 

committee, I’d ask you all rise now to take your oath, and raise 

your right hands. 

Do you all solemnly swear or affirm the testimony you are about 

to give will be the truth, the whole truth, and nothing but the 

truth? 

I have carefully viewed, and all answered in the affirmative. 

Please take your seats. 

You are a large panel, and you have a lot to say. I would only 

mention that there are 20 groups behind you who were not fortunate enough to be seated with you. So please, to the greatest extent 

possible, make sure you finish right at 5 minutes so that we can 

get to Q and A, much of which will help with issues that may be 

beyond your opening statements. 

With that, we recognize Mr. Wright. 

STATEMENT OF BOB WRIGHT 

Mr. WRIGHT. Thank you, Chairman Issa. 

Chairman ISSA. I’m afraid your microphone is not quite on or 

close enough. Could you also pull it a little closer. There’s a sort 

of skill we gain here of getting to the mic and really getting to it. 

It goes with being a Congress Member for a long time. 

Mr. WRIGHT. Let’s see how we do here. 

Chairman ISSA. You have what it takes. 

Mr. WRIGHT. Well, thank you, Chairman Issa, very much for having us. 

And, Ranking Member Cummings, thank you so much for being 

here. 

We also—I also want to thank Dan Burton for all the work that 

he’s done over many years to bring awareness and attention to and 

discussion of and action on autism. Very, very important. 

I’d also like to recognize Mr. Smith, who has done an extraordinary job as well all over the country and with the coalition and 

many others, and I’m personally involved with him in many. So 

thank you for everything you have done for all of us. 

I want to say I’m here because of my grandson Christian, who 

is now 11 years old. And my daughter Katie is sitting back here, 

and my wife Suzanne. And he was a boy that was 2 years old, and 

we thought he was very precocious. He seemed to be brighter than 

average, he walked early, he had enormous vocabulary, and then 

he lost everything. And I’ll tell you without any secret that my— 

my daughter, you know, firmly believes that vaccines were the relationship that triggered him into this pit. 

63 

So we lost a little boy we knew. It wasn’t like he was a disabled 

person who got more disabled. He was a boy, and we lost him. And 

that’s what led us to found Autism Speaks. 

We could take care of Christian, but we saw so many others out 

there. And I traveled around the country, and I sat in meetings, 

similar to the meeting you’re having here, where I would ask questions about autism. I went to universities, I went to medical 

schools, and I got the worst answers imaginable. Actually I heard 

some of the same answers here just a few minutes ago on the 

panel. It must be they’re on a Twitter thing or something. It was, 

we don’t know, but we’re sure; or, we’re sure, but we don’t know, 

but we really don’t know, but we’re sure. And that was a lot of the 

issues, why are the numbers so high and so forth? 

So we got into this and said—we called around to find like-minded people, and that’s how Autism Speaks got founded. And we’ve 

been fortunate. We’ve raised a considerable amount of money. We 

have 250 full-time employees around the country. We have 90 

walks. We have 400-some-odd thousand who walk for us here. We 

have activities outside the United States. 

But all of that’s based on that little boy. And the fact that in all 

my business career, I was shocked that I was so ignorant of all the 

situation; and then when I got into it and tried to learn, I was even 

more shocked that nobody was helpful and that we were just 

trapped and amazed here of obviously escalating issues, all kinds 

of things. 

So I’m going to try to answer a couple of things, or at least bring 

some help here. 

We talked about the 1 in 88, which is exactly—that is the U.S. 

Number. Now, the CDC is what a—what they call a passive—it’s 

a passive resource. They go around and they look at medical 

records that are in—that are existing. That’s a variable. And they 

also look at school records. That’s a variable. They do not talk to 

children. There’s no clinical evaluation, no talk to parents or anything. And that’s—that partly accounts for some of the differences 

when you go around the country. Some schools have better records; 

some school don’t. Some—whatever. And that’s what they do. 

The Korean study that we financed, which is the most—it’s the— 

it’s the gold-plated model on how to do this. We went through the 

same process in Korea with Koreans, with Japanese, with Americans, and we ended up finding out that there was about 1 percent 

of the population, which is just what we had here. 

But then a second thing happened. Parents wanted to offer comments about what we were doing, because we were only doing the 

school records and all that sort of thing. And the school district 

said fine. It’s 100,000 in population area in Seoul. And the school— 

we asked parents that wanted to come in that they could come in 

and offer comments and so forth. 

Well, they came in on all kinds of issues, and we separated them 

out to 2 years. And out of that we actually had 1 more percent of 

the entire community of that same community diagnosed with autism. We brought people in. So the number is 2.657 percent. I have 

no reason to believe that that number won’t be duplicated in the 

United States with that methodology. That’s why we are financing 

this effort to convince the CDC that—they don’t actually have disVerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00067 Fmt 6633 Sfmt 6633 C:\DOCS\80405.TXT APRIL
64 

agreement with the number. Their position was, we don’t have any 

money. We can’t afford that. That costs more money. We only do 

this. 

And that sort of speaks for itself. 

But I’ll also tell you that—— 

Chairman ISSA. If you could do that in summation, please. 

Mr. WRIGHT. I’ll also tell you that we have—they spend almost 

no money, almost no money on autism; $20 million, $30 million, including all—all of the—all of the—the safety issues. That’s a— 

that’s—we could fix that in an hour for about $35 million a year 

on top of what they do. 

So the name of this committee, the Oversight Government Reform, there’s a real issue there. I wish they weren’t even involved 

with us, but they’re the only ones that did prevalence. We are on 

page 7 of their—their 2-page top priority list, and autism is right 

at the bottom of it. I don’t know why Dr. Boyle, but the nature of, 

I guess, being in the large—large—they all want to say, we have 

no money. We don’t have any priority. I can’t get anybody to hear. 

And I don’t complain enough. So this is about speaking up. 

Chairman ISSA. Thank you very much. 

[Prepared statement of Mr. Wright follows:] 

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AUTISM SPEAKS '''' ffs time to list£'n, 

Written Testimony Provided for the 

House Committee on Oversight & Government Reform 

Bob Wright 

Co-founder, Autism Speaks 

November 29, 2012 
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\\ri.~h[P el2 

Good afternoon, Chairman Issa, Ranking Member Cummings, and members of the committee. I 

am Bob Wright, co-founder of Autism Speaks. Thank you for inviting me to testify. 

More than seven years have passed since my wife, Suzanne, and [ founded Autism Speaks. 

During that time, we have seen the prevalence of autism in America nearly double - from 1 in 

166 children in 2005 to I in 88 today, including 1 of every 54 boys. The prevalence of autism 

has increased by 1,000 percent over the last 40 years. This year alone, approximately 46,000 

children will be diagnosed with an autism spectrum disorder - that's more than pediatric AIDS, 

juvenile diabetes, and childhood cancer combined. Yet even these alarming statistics may 

understate the true picture - the most comprehensive study to date, completed last year in South 

Korea, found a prevalence rate of 1 in every 38 children. The methodology used in this study is 

now being replicated in South Carolina, with funding from Autism Speaks, and may well yield 

similar findings. There is no getting around the facts: autism has become an epidemic. 

The incremental lifetime cost of caring for a single person with autism is staggering - as much as 

$2.3 million. The annual cost of autism in the United States is now estimated at $137 billion - a 

figure that exceeds the gross domestic product of 139 countries. These spiraling costs are borne 

not just by families but by taxpayers at the federal and state level, as well as by localities. 

Consider as well the cost to our economy - when one of every 54 boys is diagnosed with autism, 

2 percent of the productivity of our nation's male workforce is diminished. The toll on our 

families, however, is unimaginable. A diagnosis of autism too often leads to divorce, personal 

bankruptcy or shattered careers. A spouse in Michigan has to give up working in order to care 

fulltime for a child with autism at home. A family from Alabama is uprooted as they search for 

jobs in states where treatment for their child with autism will be covered by insurance. Parents in 

Utah are forced to surrender custody of their children to the state because they cannot care for 

their needs. And most shamefully, we see the U.S. Marine back home in Texas after being 

wounded in combat in Iraq having autism treatment denied to his son. 

These burdens on families can be addressed, the costs can be reduced, and the quality oflife for 

individuals with autism improved. But it will require new thinking, engaged leadership, and a 

concerted effort bridging all sectors of our society. 

Autism Speaks began as an idea to give a voice to millions of struggling families around the 

nation and has materialized into the world's leading autism science and advocacy organization. 

We are dedicated to funding research into the causes, prevention, treatments, and for those who 

desire a cure for autism; increasing awareness of autism spectrum disorders; and advocating for 

the needs of individuals with autism and their families. 

Since our founding seven years ago, Autism Speaks has committed more than $180 million in 

private funding to research and has supported innovative scientific and clinical programs such as 

the Autism Speaks Autism Treatment Network, a network of hospitals, doctors, and researchers 

across the United States and Canada dedicated to improving the care of children with autism. 

Our research efforts also have led to improved screening tools that can be used by pediatricians 

and more effective behavioral and medical treatments for people with autism throughout the 

lifespan. Our awareness activities include the worldwide "Light It Up Blue" project on World 
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\\ r i h I I' L' I 3 

Autism Awareness Day (April 2nd) and the "Learn the Signs" campaign with the CDC and Ad 

Council which has generated over $316 million in donated media. 

Autism Speaks provides resources and support for families in the autism community, handing 

out thousands of free tool kits and awarding hundreds of thousands of dollars in grants for 

community programs, camp scholarships, and families in crisis each year. In 2012 alone, our 

Autism Response Team and Autism Treatment Network have responded to over 25,000 phone 

calls and emails from families looking for assistance. Recently, our AutismCares program 

allocated $120,000 in private funding to help families impacted by Hurricane Sandy. 

Through the work of our government relations team in state capitals and on Capitol Hill, 

individuals with autism have better access to applied behavior analysis (ABA), the most widely 

used behavioral intervention for treating autism, and other critical health care services. Thirtytwo states, representing 75% of the US population, now have comprehensive autism insurance 

coverage, and beginning in 2013 many federal civilian employees will gain access to behavioral 

health treatments through the Federal Employees Health Benefits Program. 

We are incredibly proud of what Autism Speaks has accomplished. We cannot, however, go it 

alone. We need a strong federal partner. 

OUf families are not asking for a blank check from the federal government. We are asking for 

real help that delivers meaningful results more quickly to our community and with a 

transparency that provides accountability to taxpayers. We are asking our elected leaders to 

recognize that there is a public health crisis racing across this nation and we are not keeping 

pace. We need a plan and we need it now. 

Autism Must Be a National Priority 

I want to say this again: the rate of autism in America is now I in 88 children, including 1 in 54 

boys. It has become alarmingly apparent that we are no longer dealing with just a public health 

crisis, but a public services crisis as well. As this population continues to grow, our ability as a 

society to care for people with autism falls further behind. 

Real families struggle every day with autism and those struggles do not end when a child with 

autism becomes an adult. A recent study found that more than one-third of young adults with 

autism have no paid job experience or post-secondary education in the first six years after high 

school. In other words, they most likely live at home with nothing meaningful to do during the 

day. That is a sobering statistic when you consider that more than half a million children with 

autism will reach adulthood within the next decade. 

But with this sobering reality comes a meaningful opportunity for this country. We know that 

there are effective therapies that will improve the life-trajectory of people with autism. This 

means that with more effective translational research and better access to supports and services 

for the individuals I described, we can help them lead more independent lives and in some cases 

join the workforce. The trend that contributes to the $137 billion in annual costs can be reversed 

dramatically for the country as a whole and for the people affected. In the current fiscal crisis, 
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Wright Pag~ 14 

this potential reduction in current and future costs should be appealing to both sides of the aisle 

and across the ideological spectrum. 

Clearly, we have a long way to go in meeting the needs of people with autism and their families. 

The status quo isn't working. We have to do better, and we have to act now. It is time we commit 

to a comprehensive national strategy for autism. 

A Comprehensive National Strategy is Essential 

First, we must continue to fund a robust research effort but should do so more smartly. 

We are only beginning to grasp the complex connections between genes and environment in 

autism. There is now growing evidence that certain environmental factors, including chemicals, 

toxins, infections during pregnancy, maternal nutrition and parental age, can affect brain 

development in combination with an underlying genetic predisposition. Recent studies are 

pointing the way to the development of medicines that could reduce the core symptoms of autism 

and help improve communication and social skills. Novel behavioral health interventions are 

being tested that can be started with young infants, as well as implemented later in life to help 

adolescents and adults develop the skills they need to be successful, productive adults. These 

new treatments have the potential to significantly impact lives and reduce the burden of autism to 

families and society. The federal commitment to autism research through the Combating Autism 

Act (CAA) has been an important first step in better understanding the causes and underlying 

pathology of autism. Autism has historically received a fraction of the research funding of many 

less prevalent disorders, and even under the CAA, autism research comprises about one-half of 

one percent of total NIH research funding. The research into environmental factors I have noted 

is an example of an area of research that was mostly neglected prior to the CAA. Further, the 

Interagency Autism Coordinating Committee (IACC) established by the CAA has served as a 

convening function for scientists and autism advocates to have a dialogue with the National 

Vaccine Advisory Committee on the important vaccine safety issue. J These steps have been 

important, but much more can and needs to be done. What continues to be lacking is a policy that 

directs funding according to a strategic plan, measures meaningful progress, operates with a 

sense of urgency, and assures accountability. We need a national commitment - much the way 

the country has committed to address the AIDS crisis or Alzheimer's disease to invest the 

resources needed to solve this growing public health crisis. We must demand results that 

improve the lives of people with autism today, not just in the future. Through a smarter 

investment in research we can unlock the door not only to autism, but a variety of brain 

disorders. 

Second, we must commit to diagnosing children with autism, regardless of background, no later 

than 18 months of age, and increasing access to early intervention. 

Five years ago, the American Academy of Pediatrics recommended that all children be screened 

for autism at 18 and 24 months, and that appropriate referrals be made ifautism is suspected. 

This is crucial because we know that early intervention can alter the life trajectory of children 

with autism. Today the average age of diagnosis remains close to five years. Geography, 

ethnicity, and race may place a child at a particular disadvantage in getting a timely diagnosis. 

J Louis Z. Cooper, Heidi J. Larson, and Samuel L. Katz, Protecting Public Trust in Immuni=ation, Pediatrics 

2008:122; 149 
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\\ r I iJ! 1'" ,-,: I 5 

Research shows that children from ethnic minority backgrounds must go to the doctor many 

more times before receiving a diagnosis and thus, they begin receiving services at a much older 

age. Autism is not something that a child outgrows. We must develop new and better ways to 

increase access to early diagnosis for all children no matter what their background is. 

Third, we have to develop and make available effective medicines and treatments for the 

debilitating aspects of autism. 

Too often, scientific discoveries gather dust on laboratory shelves or are entombed in the pages 

of academic journals. We need to speed to market products that improve the lives of people with 

autism. For our part, Autism Speaks recently established a not-for-profit affiliate, Delivering 

Scientific Innovation to Autism (DELSIA), to help do this work. From Washington, we are 

looking for the National Center for Advancing Translational Sciences (NCA TS), NIH's newest 

center, to take a key role in fostering collaboration between public and private efforts at real 

world solutions. This committee can be instrumental in providing oversight for this opportunity. 

As we develop the technologies of tomorrow, we must fully utilize the treatments and 

interventions of today. Right now, autism is considered a treatable disorder. But ten years ago, 

many experts didn't believe it was. Today, we can change the course of a child's development 

and outcome. Research has shown that early intensive behavioral intervention significantly 

increases IQ, language abilities, and daily living skills, while reducing the disabling effects of 

autism and the demands on taxpayers for avoidable costs, such as special education. Autism is 

not a static disorder; we can treat it and help those affected lead better, more fulfilling lives. 

Fourth, we must recognize and address the disparities in access to proven behavioral health 

treatments. 

We have long known the benefits of behavioral interventions in autism, including the use of 

ABA. In 1999, the Surgeon General of the United States reported that "[tJhirty years of research 

demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in 

increasing communication, learning, and appropriate social behavior." Yet today families across the 

country continue to fight for behavioral health benefits, negotiating a complex maze of state and 

federal laws and insurance company practices. 

Consider this - civilian employees of the federal government who for the first time in 2013 will gain 

coverage for ABA through the Federal Employees Health Benefits Program because administrators 

finally came to acknowledge the therapy as a valid medical intervention. But over in the military, the 

administrators ofthe TRlCARE program view ABA differently and offer only benefits limited to 

active duty personnel. Even wounded warriors who retire because of combat-related injuries cannot 

get ABA treatment for their children. 

Here is a classic example of two agencies within the same government heading in opposite directions 

on the same issue. It is appalling that our military families end up with the short end ofthe stick. 

Getting help for any child, let alone the child of a parent who has honorably served our country, 

should not be so difficult. We can do something right now to help these families - we can enact a 

National Defense Authorization Act (NDAA) that clarifies the coverage of behavioral health 

treatment for autism. The House passed a version of the NDAA that assures all Department of 
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Wright I' ge 16 

Defense members of the military, regardless of their duty status, will receive autism insurance 

benefits for their dependents. Now it is time for the Senate to pass a bill with the same provision. 

This same incongruity can be found all across America. Repeatedly, we find families overjoyed to 

gain coverage for ABA when their state enacts autism insurance reform. They are happy because 

they have the good fortune to work for an employer with a state-regulated health plan. Their 

neighbors, however, may not be so fortunate. Because many employers self-fund their health plans, 

they are exempted from following state insurance laws. Their plans are regulated by the federal 

government under ERISA. Two families, same problem, but different outcomes. This is 

fundamentally unfair, illogical and, with autism prevalence on the rise, unsustainable. 

Fifth and finally, we need to address the needs of adults with autism for continuing education, 

employment, housing, and community integration. 

With early identification and intensive intervention, some children with autism can lose their 

diagnosis, but most children with autism become adults with autism. To be frank, we do not 

know very much about the life experiences of adults with autism; only 2% of total autism 

research funding is spent on lifespan issues. Young adults with autism face real challenges. The 

majority of adults with autism are unemployed or underemployed, a tragic waste of potential. 

Hiring people with autism is smart business - just ask Walgreens, TlAA CREF, AMC Theatres 

or any of the other national employers who have made the investment in our community. 

Executive Order 13548, which has increased the percentage of disabled workers in the federal 

workforce, has been an important step in the right direction, as has been a proposed rule calling 

on federal contractors to set a goal of hiring people with disabilities for at least 7 percent of their 

workforces. People with autism generally follow rules and pay close attention to details. They 

want to work. Give them the support they need and they will succeed. It's time for corporate 

America to recognize the potential of employing people with autism. They will find a partner at 

the National Governors Association, whose chairman, Delaware Governor Jack Markell, has 

made his top initiative increased employment opportunities for people with disabilities. 

Like all Americans, adults with autism should be able to choose where they live, with whom they 

live, and how they live. But the great demand for housing among people with developmental 

disabilities and the lack of appropriate support services often force families to decide whether to 

make their own housing arrangements or wait indefinitely for an adult child with autism to move 

out of the family home. A broad range of housing and support options must be available to meet 

the needs of people with autism. These options must not be limited by government-imposed 

restrictions. Where people choose to live should drive where the government directs our money. 

People with autism and their families should have the ability to save and plan for the future. The 

Achieving a Better Life Experience (ABLE) Act would allow tax-advantaged savings accounts 

for employment support, housing, and other life needs of people with disabilities. These accounts 

would be subject to much the same rules as 529 college savings accounts and would not 

jeopardize eligibility for Medicaid and other means-tested federal programs. A bipartisan 

majority of House members and 40 Senators have signed on to co-sponsor ABLE. This is readily 

achievable in the current Congress and would bring relief to parents who face their own financial 

cliff - what happens to their child with disabilities when they are no longer around to support 

them? I ask the members of this committee to help pass ABLE in this Congress. In this time of 
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\\ r i h l I' d h' t' I 7 

fiscal cliffs, this is a common sense solution that will help disabled individuals and their families 

achieve even greater independence. 

If the list of what must be accomplished seems long, it is because the stakes are very high. On a 

personal scale, there is this harsh reality: ten years ago, even five years ago, many people in this 

committee room would have known autism only from what they read in the newspaper or saw on 

television. Today, they are the parents, grandparents or relatives of affected children. Autism has 

become ubiquitous. Autism has changed our lives, and it continues to change the lives of 

millions of Americans. We must face up to the crisis. We are ready to join you as a partner. One 

in 88 can't wait. 
72 

Chairman ISSA. And we now go to Mr. Badesch, with the same 

microphone problem you will all have. It’s an acquired skill, and I 

appreciate you all for learning it. 

STATEMENT OF SCOTT BADESCH 

Mr. BADESCH. Thank you, Mr. Chairman, Ranking Member 

Cummings, and the other members of the committees. 

My wife and I are the very proud father of Evan Badesch, who’s 

a 25-year-old son who is—with autism who attends Marshall University, which, like the other school represented on this panel, is 

thriving and helping so many with autism. But he is one of the 

more fortunate with autism. 

The Autism Society of America is the Nation’s largest and oldest 

grassroots organization dedicated to the autism spectrum. As has 

been discussed today, the incidence of autism has shown marked 

increase as the CDC surveillance rates, currently at 1 of 88 births. 

Many children and adults may not be properly diagnosed, and this 

number may actually be higher than the actual incidence. 

We applaud the work of the CDC and appreciate the partnership 

we have with CDC, and particularly efforts we are working with 

the CDC on addressing better some of the questions asked earlier 

about how we can increase the growing disparity of the—the autism diagnosis rates among people of color and other ethnicities 

and geographic locations. 

We would suggest that currently the services for autism are difficult at best to navigate, and often when services are provided, 

they may not be individualized or be the best approach for the 

needs of the individual. 

The Autism Society is about helping people today and preparing 

them for tomorrow. And we believe that government services, if 

funded by government dollars, should have focus on advancing an 

individual’s quality of life in measurable and meaningful ways. We 

need to reexamine how government services can be provided not on 

a limited definition of services, but rather based on an individual’s 

needs. 

As I noted, today there is a significant disparity in the need for 

available funds for both long term and support—and to support 

people with disabilities. This disparity has resulted in very long 

waiting list for services throughout our country, and estimates of 

that waiting list being anywhere from 80,000 individuals nationally 

to as many as 200,000 people who go without services each day. 

Meeting the significant need will not only require expansion of 

services, but we believe it requires us as a society and government 

to think differently about the way services are delivered. 

An individual today who’s diagnosed ineligible for services and 

then put on a waiting list is denied the critical services that we all 

know could help him or her move forward in addressing qualityof-life needs. 

We recognize that funds are limited, and we would encourage the 

committee to examine ways that if funds have to be cut, that they 

not be cut at the expense of individuals, but at the expense of unnecessary duplication and administrative services. 

We also would encourage the government—this committee in its 

role to look at the public schools. Our public schools are required 

73 

by law to provide every child with an appropriate education, and, 

unfortunately, 50 percent of students with disabilities are either 

dropping out, or not graduating, or not receiving appropriate degrees. This is very difficult when we look at how to help those children in adult life. 

We also believe that government services must be outcome based, 

and we must encourage that those services aim to help a person 

maximize his or her independence in self-sufficiency. And we also 

have to take a recognition that as a Nation, while we are very concerned about an unemployment rate when it goes above 5 or 6 percent, the reality is that for the individuals with people with disabilities, that rate is as high as 78.5 percent. 

Government’s responses are most effective also when resources 

are available under one umbrella. Any parent or any individual 

who’s had to navigate the system will say it’s impossible to navigate. The committee must—needs to also look at how we can more 

effectively, and we would argue at a much lower cost, coordinate 

the government’s response through a one-stop model or centralization of information. 

We also would encourage this committee to look at the issue of 

Medicaid portability. When a person moves from one State to another, he or she loses their Medicaid community support services 

and has to start over again. This is particularly of concern to military families when they get relocated from one base to another. 

Finally, I want to mention about the Combating Autism Act and 

the Interagency Coordinating Council. With all respect to our prior 

speaker, we would disagree with a lot of what he said. This is a 

group that in concept could do a great job with coordination, but 

in reality it’s not. If a body is going to be, in fact, a coordinating 

body, it has to include public—private and not-for-profit sectors. 

We have to be an equal partner at the table. It also has to include 

government representatives from the Department of Labor, Justice, 

Housing and Defense. And it also has to meet. 

We also support, very strongly encourage the continued funding 

of training components of the Combating Autism Act. 

Finally, I would just like to encourage, as said prior to all this, 

the need for adult services is extensive. When you talk about a fiscal cliff, the greatest cliff that occurs in our community is that 

when a person turns 21, and absolutely no services are available 

for that person when they need. 

And, again, we thank the committee, and I’ll happy to answer 

any questions when all the other speakers are over. 

Mr. MEEHAN. [Presiding.] Thank you, Mr. Badesch. 

[Prepared statement of Mr. Badesch follows:] 

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the individual. The Autism Society believes that government services should help focus on 

advancing an individual's quality of life in measurable and meaningful ways. We need to reexamine how government services can be provided, not on limited definitions of services but 

rather based on an individual's need. 

Today there is significant disparity nationwide in the need for and the availability of publicly 

funded long-terms services and supports for people with disabilities. This disparity has resulted 

in very long waiting lists. Estimates of the number of people with developmental disabilities in 

the U.s. waiting on various lists for services range from 80,000 to 200,000. 

Meeting these significant needs will not only require expansion of services, we believe it 

requires us to think differently about the way services are delivered. 

An individual determined by diagnosis to be eligible for services, when on a waiting list is being 

denied those critical services and has very limited options if they are unable to pay for private 

fee services or if they cannot access other services provided by the nonprofit or private sector 

community. 

We recognize the realities of limited funding and encourage the committee to examine 

Medicaid funds spent on unnecessary administration and duplication at the expense of service 

provision. An example is a family that applies for services based on a diagnosis in one state 

needs to be reassessed for that disability if he or she moves to another state. This is an 

unnecessary cost to both the federal and other state governments. 

We would also recommend that public schools must be prepared to provide a quality education 

for each child and prepare them for employment, advanced education and independent living 

so they are able to be successful adults. Reports from the National Center for Educational 

Statistics and the Department of Education show that only 43% of people with disabilities will 

graduate high school with a diploma. This means that 57% (likely comprised largely of students 

with developmental disabilities) either drop-out of school or receive a certificate of attendance 

that severely limits their ability to attend college or pursue competitive employment. 

Related to education, Senator Harkin's Restraint and Seclusion Bill is critical for students with 

autism. Our society should not allow unnecessary restraint and seclusion of students with 

autism; they need to be present in the classroom in order to graduate with the strong 

educational foundation that prepared a student for the greatest degree of independence in 

employment and living critical components of success in adulthood. 

Quality of life for a person living with autism depends not only on the foundation that is 

provided in childhood but often requires ongoing supports that are specific to individual needs. 

Government services must encourage work, family and savings (all common American values) 

for those who access social support services. Problems such as poverty are very common for 

people with developmental disabilities and can result in dependence on government support as 
76 


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well as high rates of unemployment. Justifiably, concern rises when the national unemployment 

rate is above 5 or 6%. The Department of Labor reports that the unemployment rate is 78.5% 

for individuals with disabilities. 

Government's response can be most effective when resources are available under one umbrella 

organization and allow more flexibility in the use of funds to help the unique needs of that 

individual. The committee may also examine how to more effectively coordinate the 

government's response through one-stop models and centralization of information. 

The rules of Medicaid portability must be examined. When a person moves from one state to 

another, he or she loses their Medicaid Community Supportive Services and starts over again 

on the waiting list in their new state of residence. This has significant impact on our military 

families and has caused some families to maintain residence without jobs in order to maintain 

services. 

The Combating Autism Act established the Interagency Autism Coordinating Committee which 

is, in concept, a great idea. But I ask you, how can true coordination occur if it is not comprised 

of adequate representation from both the private and not-for-profit sector? We suggest that 

this coordinating body must meet regularly and be made up of representatives from HHS, but 

also from the Departments of Labor, Justice, Housing and Defense. We also challenge the 

committee to examine where, in the federal government structure, IACC should be placed. 

When is within NIH, the coordination effort may be defined as health and research rather than 

focused broad-based service provision. 

The Autism Society applauds the efforts of many organization and government agencies that 

have led the way in examining the important clinical research related to autism. Research is 

essential, but we believe there is an imbalance of funding directed at services or applied 

research. I would ask that the committee to examine the need for more service funding before 

any increases in research funding is provided. 

Finally, I would like to encourage the committee to examine the real need for an increased 

federal response to the needs of adults living with autism. And each one should be given the 

opportunity to be a gainfully employed adult. It is not only the right thing to do, it will save 

tremendous resources to individuals, families and the government when those willing and able 

to work are provided the opportunity to earn a living wage. We must also provide a safety net 

for adults who still require services. I would also encourage the committee to examine the 

older adults with autism who are being cared for by aging parents. Again and again we hear 

that one of the biggest fears of parents is who will care for their child when they are no longer 

able. 

I appreciate the interest from this committee in addressing how our nation can be more 

effective and responsive to people living with autism. 

Thank you. 
77 

Mr. MEEHAN. Mr. Wright, you have one quick point? 

Mr. WRIGHT. A piece information just came to my attention. The 

Senate just passed the TRICARE Amendment, restoring all military personnel ABA therapy with a retired end service. It’s taken 

5 years to do that, 5 years. 

Mr. MEEHAN. Mr. Blaxill, you are now recognized for your testimony. 

STATEMENT OF MARK BLAXILL 

Mr. BLAXILL. Good afternoon. I’m honored to be here to represent 

SafeMinds, grateful to the chairman and to Congressman Burton 

for his terrific work, and I’m humbled by the opportunity to represent the community of autism families. 

I would like to enter into the record—well, we had collected 

testimonials in the last couple days from over 300 autism families 

who wanted to attend the hearing but could not, and you can read 

their statements here. 

Mr. MEEHAN. Without objection, so ordered. We will include that 

in the record. 

**The testimonials have been placed in the official hearing folder. Due to the volume they are not able to be printed.** 

Mr. BLAXILL. I wrote a book on autism. It argues that autism is 

a new condition. 

In 1935, Leo Kanner wrote this book. It’s 537 pages long. Not a 

whisper of autism in any of it. Three years later, he saw the first 

child with autism, a family from Mississippi that came all the way 

up to visit him, and he’d never seen a child like Donald Triplett 

before. In 1943, he wrote his famous paper in which he argued, 

‘‘Since 1938 there have come to our attention a number of children 

whose condition differs so markedly and uniquely from anything 

reported so far that each case merits a detailed consideration of its 

fascinating peculiarities.’’ 

Before 1930, the rate of autism in the world and in America was 

effectively zero. Today, nearly 70 years after Kanner’s paper, reported autism rates are 1 in 88. In New Jersey, 1 in 29 boys born 

in 2000 were diagnosed as autistic. What’s going on? Why are so 

many American children sick? 

I think we have to face reality. We need to be clear: Autism is 

a public health crisis of historic proportions, worse than poliomyelitis. It’s devastating a generation of children and their families. We need to face that reality. Autism is a national emergency. 

We skip to slide 5. There’s a summary here of historical autism 

surveys in America. For a long time we had low rates in America, 

about 1 in 10,000. 

Keep flipping. There we go. 

Then around 1990, something new and terrible happened to a 

generation of children. Autism rates didn’t just rise, they multiplied. This escalation covered both full-syndrome autism and the 

broader autism spectrum, including Asperger’s. 

Some people claim this isn’t real, that we’re just doing better diagnosing. That’s just wrong. If you read the old literature, the old 

surveys, they looked for everybody, and they couldn’t find people. 

They didn’t miss 99 percent of the children with autism. It’s not 

hard to find a child with autism. It’s obvious when they’re autistic. 

78 

The notion that we’re just doing better diagnosing—even in the 

CDC studies, they’re using the same methodology. So when you see 

those number rising, that’s not because the methods are changing, 

it’s because there are more cases. 

In the midst of this crisis, the Federal agencies responsible for 

the health of our children have failed in their duty. CDC’s negligence has led the way. Many of us believe CDC has actively covered up evidence surrounding autism’s environmental causes. NIH, 

meanwhile, has received the lion’s share of funding, money they’ve 

wasted on status quo research and gene studies. It’s absurd to 

focus on genetic research in this crisis. There’s no such thing as a 

genetic epidemic. 

I’ll skip past a couple of examples of malfeasance. I’ll just say 

that in the financial world, the result of pressure to manipulate 

numbers to provide the answers that bosses want has a name; it’s 

called securities fraud. In medicine there are similar pressures; 

they are called special-interest politics and even peer review. And 

what CDC has given us is the medical equivalent of securities 

fraud all to avoid the inconvenient reality of the autism epidemic. 

In the face of a national emergency, government agencies, especially CDC and NIH, have performed poorly and behaved badly. We 

need accountable, new leadership on autism at NIH and CDC. We 

need an advisory committee that believes in combating autism, not 

newly stocked with—one newly stocked with appointees who actually oppose that mission. We need a Combating Autism Act that 

truly combats autism. We need to stop investing in the autism gene 

hunt and identify what has changed in the environment that could 

possibly have injured so many children. The scope and the magnitude of these changes, it’s complicated, yes, but it can’t be that 

complicated. There have to be a very small list of things that could 

have changed. 

Ultimately we need to face and answer the question why are so 

many children sick. We’ll only do that hard work if agency leaders 

are held accountable to the American people, not powerful interests 

in the medical industry. 

So we’re asking you the members of the committee, for your help. 

Please, let’s not make this hearing a one-time episode. Please stay 

on the job in the next Congress. Root out the failures, the waste, 

the fraud, the negligence and the abuse in these agencies that 

aren’t doing their job. We need CDC and NIH to do their jobs, and 

they’re not. There’s a crisis. We need your help. 

Thanks very much for your time. 

Mr. MEEHAN. Thank you. Thank you, Mr. Blaxill. 

[Prepared statement of Mr. Blaxill follows:] 

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Testimony of Mark Blaxill 

Board Member, SafeMinds 

Before the 

Committee on Oversight and Government Reform 

US House of Representatives 

November 29,2012 

Good afternoon Mr. Chairman and Members of the Committee. I am honored to be here today 

on behalf of the non-profit organization, Safe Minds, grateful to Chairman Issa for today's 

invitation and humbled by the opportunity to represent the community of autism families. 

(Slide 1) In addition to my comments, I have provided a more extensive report from SafeMinds 

and documents for the record. 

(Slide 2) In 1935, John Hopkins professor named leo Kanner wrote the world's first textbook on 

Child Psychiatry. In 527 pages and 43 chapters, Kanner described every psychiatric condition in 

children know to medicine at the time. There was no condition remotely resembling autism. 

In 1938, Oliver and Mary Triplett left Mississippi with their five year old son Donald to visit 

Kanner, by then considered the world's leading authority on children's development. When 

Kanner met Donald he was fascinated. He had never seen a child like him. 

In 1943, Kanner wrote a paper inspired by Donald. "Since 1938," he wrote, "there have come to 

our attention a number of children whose condition differs so markedly and uniquely from 

anything reported so far, that each case merits-and, I hope, will eventually receive-a detailed 

consideration of its fascinating peculiarities." 

The oldest child of the eleven described was born in 1931. Kanner subsequently diagnosed 

hundreds of children with autism, but never found a case born before 1930. The historical 

record is clear: before 1930, the rate of autism was effectively zero. 

(Slide 3) Today, nearly 70 years after Dr. Kanner's paper, reported autism rates are 1 in 88 

American children born in the year 2000. In some states, the rate is higher than 1 in 50. 

(Slide 4) In New Jersey, 1 in 29 boys born in 2000 were diagnosed autistic. 

What's gOing on? Why are so many American children sick? 

let's be clear. Autism is a public health crisis of historic proportions. Worse than poliomyelitis. 

It's devastating a generation of children and their families. We need to face up to the reality. 

Autism is a national emergency. 

(Slide 5) Here's a summary of historical autism surveys in America. For a long time, reported 

U.S. autism rates were low, estimated at about 1 in 10,000. Then around 1990 something new 

Page 1 of 3 
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and terrible happened to a generation of children. Autism rates didn't just rise, they mUltiplied. 

This escalation occurred in both "full syndrome autism" and the broader autism spectrum, 

including Asperger's syndrome. 

Some observers have claimed this rise is not real. That numbers are going up because of "better 

diagnosing." While it is true that we now diagnose autism with better tools, that doesn't mean 

there is some "hidden horde" of overlooked autism cases. The old surveys didn't just miss 99% 

of children with autism. Anyone who reads them will see the obvious: it's clear the researchers 

were diligent in finding cases and confident that they found the vast majority of children. It's 

horrible but true; reported rates of autism have risen simply because there are more cases of 

autism. 

In the midst of this crisis, the federal agencies responsible for the health of our nation's children 

have failed in their duty. CDC's negligence has led the way. Many believe CDC has actively 

covered up the evidence surrounding autism's environmental causes 

NIH has received the lion's share of Congressional funding, money they have wasted on status 

quo research and gene studies. It's absurd to focus on genetic research in this crisis, there's no 

such thing as a genetiC epidemic. 

(Slide 6) CDC first started investigating environmental causes in 1999 in Brick NJ. Their survey 

data showed that autism rates went from zero in 1989, to 1 in 128 four years later. But they 

used statistical tricks (and the fact that autism surveys miss many three and four years olds) to 

publish a finding that there was no increase. 

(Slide 7) A CDC analyst also discovered in 1999 that higher levels of infant exposure to a 

mercury compound in vaccines increased autism risk more than tenfold relative to zero 

exposure. The analyst wrote about this result to his supervisors: "It just won't go away," he 

said. But he and his colleagues used more statistical tricks and published a finding that made 

the risk go away. 

In the financial world, the result of the pressure to manipulate numbers to provide the answers 

bosses want has a name - securities fraud. In medicine there are similar pressures: they're 

called special interest politiCS and peer review and what the CDC has given us is the medical 

equivalent of securities fraud. All to avoid the inconvenient reality of the autism epidemic. 

In 2006, Congress gave the NIH a mission to "combat autism." You authorized $850 million for 

that mission. Frustrating to most in the autism community, NIH spent most of that money on 

the great autism gene hunt while blackballing environmental researchers and defying parent 

concerns. It's been a colossal waste of money and time. Not a single case of autism has been 

prevented. Not a single child received improved treatments. American families deserve better. 

In 2011, autism parents asked Congress to fix the bill. We told you that when you spend that 

much money on the wrong things, you haven't just wasted taxpayer dollars, you've 

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compounded the problem by reinforCing the denial. Unfortunately, Senate leaders didn't take 

the time they needed to fix the problems; they simply extended the old bill for three more 

years and the House went along rather than see nothing move forward. 

(Slide 8) In the face of a national emergency, government agencies, especially CDC and NIH, 

have performed poorly and behaved badly. We need accountable, new leadership on autism at 

the NIH and the CDC. We need an advisory committee that believes in combating autism, not 

one newly stocked with appointees who oppose the mission, who want us to surrender to 

autism and oppose prevention and treatment research. We need a Combating Autism Act that 

truly combats autism. We need to stop investing in the autism gene hunt and identify what has 

changed in the environment that could have possibly injured so many children. 

We need to conduct independent research into the great unmentionables, mercury and 

vaccines, connections that we've documented in the earliest cases. (I have provided to the 

Committee copies of my book, The Age of Autism which provides this history). These are the 

only environmental factors identified so far that are plausible causes for the magnitude and 

timing of this crisis. 

Ultimately, we need to face and answer the question, why are so many American children sick? 

We will only do that hard work if agency leaders are held accountable to the American people, 

not powerful interests in the medical industry. So we're asking you, the members of the 

Committee for your help. 

The autism community owes a debt of gratitude to Congressman Burton for his dedication to 

these issues. We hope as he retires from Congress, that other members of this Committee and 

Congress will continue his good work in seeking the truth about autism. 

Don't make this hearing a one-time episode. Stay on the job in the next Congress. Root out the 

failures, the waste, the fraud and the abuse. 

There's a crisis and we need your help. 

Thank you for your time. 

Attachments: 

Slides 

Blaxill Bio 

SafeMinds Autism Report 

SafeMinds Thorsen Report 

EBCALA Paper Unanswered Questions 

Page 3 of 3 
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Mark Biaxil Bio 

Mark Blaxill is the father of a daughter diagnosed with autism, a director of SafeMinds, 

Chairman and co-founder of the Canary Party, Editor-at-Large for Age of Autism, and a frequent 

speaker at autism conferences. He writes often on autism, science and public policy issues for 

Age of Autism and has published a number of articles, letters and commentaries on autism in 

journals such as Public Health Reports, the International Journal of Toxicology, the Journal of 

Autism and Developmental Disorders, Neurotoxicology and Medical Hypotheses. He has also 

been invited to peer review articles in journals such as the New England Journal of Medicine, the 

American Journal of Epidemiology, Pediatrics and the International Journal of Toxicology. As 

part of his advocacy work, he has testified before the Immunization Safety Review of the 

Institute of Medicine (2001), served on a Blue Ribbon Panel on Vaccine Safety (2004), initiated 

a symposium sponsored by the National Institute of Environmental Health Sciences entitled 

"Environmental Factors in Neurodevelopmental Disorders" (2005) and a workshop sponsored 

by the Institute of Medicine entitled "Autism and the Environment: Challenges and 

Opportunities for Research" (2007). He was a panelist at a "Meeting on Evaluating Reasons for 

ASD Trends" co-sponsored by the Centers for Disease Control and Autism Speaks (20 II). 

He received a bachelor's degree summa cum laude from the Woodrow Wilson School of Public 

and International Affairs at Princeton University and an MBA with distinction from Harvard 

Business School. In his professional career, he spent 25 years at The Boston Consulting Group, 

where he was a Senior Vice President. Recently, he co-founded 3LP Advisors, an advisory firm 

focused on intellectual property transactions, where he is a Managing Partner. He has published a 

business book, The Invisible Edge: Taking Your Strategy to the Next Level Using Intellectual 

Property (Portfolio, March 2009) and has recently co-authored a book on autism, called The Age 

of Autism: Mercury, Medicine and a Man-made Epidemic, (Thomas Dunne, September 2010). 
83 

Mr. MEEHAN. Mr. McGarry, you are now recognized for your testimony. 

STATEMENT OF BRADLEY MCGARRY 

Mr. MCGARRY. Thank you, Mr. Chairman, for the opportunity to 

address this committee and to discuss the rise in autism spectrum 

disorders, its impact on postsecondary education, and the allocation 

of government resources for ASD. 

As we’ve discussed, the CDC now indicates that 1 of every 88 

births in America results in a child diagnosed and living with autism spectrum disorders. As these numbers are staggering, students diagnosed with ASD are now of age where they are applying 

to higher-education institutions across the United States in the 

same record numbers. It is estimated that within the next 2 years, 

1 of every 100 college applicants will have an ASD diagnosis, and 

this is just the beginning of the wave that has been characterized 

as epidemic. 

In 1984, the Learning Differences Program at Mercyhurst University has educated and assisted nearly 1,000 students with disabilities to succeed in college, earn a degree, and go on to make a 

difference in the world. 

In 2008, Mercyhurst introduced the Asperger Initiative at 

Mercyhurst to meet the unique needs of the growing population of 

college students diagnosed with Asperger syndrome and ASD. The 

AIM program focuses on building a foundation of self-advocacy, social skills, and sound academic progress. 

Thanks to an appropriations grant in 2009, we did receive $100,000 from the U.S. Department of Education, and we were able 

to launch the AIM program. Two short years later, in 2011, Best 

Colleges Online ranked our Asperger Initiative at Mercyhurst number 3 in the Nation on their list of impressive special college programs for students with autism. 

Mercyhurst President Tom Gamble emphasized that Mercyhurst 

believes that capable students, if given the environment and opportunity to succeed, will do just that. Dr. Gamble has committed 

Mercyhurst to continuing the development of the Asperger program. 

Very few colleges and universities across the United States offer 

a program of collegiate support like AIM for the cohort—for this cohort of students. Too few are equipped to educate college and postsecondary students diagnosed with ASD. We have found that AIM 

students are able to excel academically, but most have a great need 

for internships and job coaching. Few have ever held a part-time 

job or understand the nuances of the workplace. 

The Department of Labor and Industry’s Office of Vocational Rehabilitation has been helpful in providing support for our AIM students, but is limited to only supporting students or employees, and 

neither internships nor job coaching are covered under current 

OVR restrictions. 

Jane Thierfeld Brown cautions in her book, Students with 

Asperger Syndrome: A Guide for College Personnel, ‘‘The 1 in 88 

number of incidence cited by the CDC will begin to be realized 

when overeducated and under- or unemployed adults with AS are 

brought into the welfare and social services systems. Individuals 

84 

without jobs will pose a burden on their families, on insurance 

companies, and on Federal and State social services. This is not 

only unnecessary, but also critically unfair to a large group of people in our society. To prevent this scenario, changes must begin 

now.’’ 

Mercyhurst is dedicated to educating and preparing all of our 

graduates for productive careers. We’ve tried to develop partnerships and have with Verizon Foundation, the PNC Bank Foundation, Conquer the Canyon, and other private donors. The next step 

for the AIM program is to fund and launch our internship program 

for our seniors and provide job coaches as needed to prepare them 

for the workplace. 

The AIM program has been cited as a model program and has 

implemented a majority of the innovative components of the program with limited resources and opportunities beyond the commitment of the university. It is our hope that a strong consideration 

is made for allocations of government resources to fund programs 

like the Asperger Initiative at Mercyhurst that assists students not 

only in receiving a college education, but also in helping them become productive citizens in our society. 

As a provider and a father, I strongly feel we need to act now 

before the task before us becomes insurmountable. 

Thank you again for your time and this opportunity. 

Mr. MEEHAN. Thank you, Mr. McGarry, for your testimony. 

[Prepared statement of Mr. McGarry follows:] 

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Committee on Oversight and Government Reform •

• MERCYHURST 

" UNIVERSITY 

29 November 2012 

TESTIMONY by: Bradley McGarry, M.A. I Coordinator Asperger Initiative at Mercyhurst 

(AIM) program - Mercyhurst University, Erie, Pennsylvania 

Thank you for the opportunity to address this committee and discuss the rise in Autism Spectrum 

Disorders; its impact on post-secondary education; and address the allocation of government 

resources for ASD. This testimony covers a discussion of the statistics of this disorder; the needs 

of this population and their ability to become productive citizens; and a vision for the critical 

next steps. 

STATISTICS 

As you know, the CDC now indicates that I of every 88 births in America results in a child 

diagnosed and living with an Autism Spectrum Disorder. As these numbers are staggering, 

students diagnosed with ASD are now of age where they are applying to higher education 

institutions across the United States in the same record numbers. It is estimated that within the 

next two years, approximately one of every 100 college applicants will have an ASD diagnosis 

and this isjust the beginning of the wave that has been characterized as "epidemic." 

Since 1984, The Learning Differences Program at Mercyhurst University has educated and 

assisted nearly 1,000 students with disabilities to succeed in college; earn a degree and go on to 

make a difference in the world. Students with learning, sensory. and physical disabilities 

experience intellectual and personal development as they work toward graduation with the help 

of our award-wining programs, recognized by K&W Guide and Peterson's Guide to Exemplary 

Programs for Students with Learning Disabilities. Our newest program (and only one-of-its-kind 

in Pennsylvania) is called AIM--the Asperger Initiative at Mercyhurst for students diagnosed 

with Autism Spectrum Disorder (ASD). 

The Asperger Initiative at MercYhurst, (AIM) focuses on building a foundation of self-advocacy, 

social skills, and sound academic progress. Students interact with faculty and a qualified staff' of 

professionals all over campus and receive a full complement of educational and social services. 

In 2008, Mercyhurst introduced the AIM Program to meet the unique needs of the growing 

population of college students diagnosed with Asperger Syndrome (AS) and (ASD). Our goal is 

to prepare all our graduates for a productive life and remove barriers to their ability to be 

successful in a college or vocational environment. 

Thanks to an Appropriations grant in 2009, supported by then Pennsylvania Congresswoman 

Dahlkemper and Senators Casey and Specter we received $100,000 from the US Department of 

Education and were able to launch the AIM program. In 20 II Best Colleges Online ranked the 
86 


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Asperger Initiative at Mercyhurst #3 in the nation on their list oflmpressive Special College 

Programs for Students with Autism. 

Mercyhurst President, Tom Gamble emphasizes that Mercyhurst believes that capable students, 

if given the environment and opportunity to succeed, will do just that. Dr. Gamble has committed 

Mercyhurst to continuing the development of the Asperger Program. 

VOID 

No other college in northwestern Pennsylvania and very few across the entire Commonwealth 

and United States offer a program of collegiate support like AIM for this cohort of students. 

Many colleges and universities teach teachers how to become Special Education teachers and 

educate students on the spectrum. Too few are equipped to educate college and post secondary 

students diagnosed with ASD. 

We have found that AIM students are able to excel academically but most have great need for 

internships and job coaching. Few have ever held a part-time job or understand the nuances of 

the work place. The Department of Labor and Industry's Office of Vocational Rehabilitation has 

been helpful in providing support for our AIM students but is limited to only supporting 

"students" or "employees" and neither internships or job coaching are covered under current 

OVR restrictions. 

We met with members of the US Department of Education, Research to Practice Division OSEP 

less than a year ago and have hit a brick wall as far as finding funding to advance our AIM 

program. Two-follow up teleconferences were held - the first with the Director of Research, 

Training and Education at the Maternal and Child Health Bureau of HHS - where the Combating 

Autism Act is administered. We learned that although the Act was reauthorized and extended 

existing appropriations for 3-more years. No NEW programs have been invited. (Senator Casey 

sponsored this bill in the Senate.) Our second teleconference was with thc manager of Transition 

and Postsecondary Programs for Students with Disabilities at the Department of Education. 

Again we learned there are no NEW funding appropriations available for new programs. 

Jane Thierfeld Brown, Ed.D. cautions in her book Students with Asperger Syndrome: A Guide 

for College Personnel 

"The l-in-88 number of incidence cited by the CDC will begin to be realized when 

overeducated and under- or unemployed adults with AS are brought into the welfare and 

social service systems. Individuals without jobs will pose a burden on their families, on 

insurance companies and on federal and state social services. This is not only 

2 
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•

• MERCYHURST 

Committee on Oversight and Government Reform '. UNIVERSITY 

unnecessary but also critically unfair to a large group of people in our society. To 

prevent this scenario, changes ... must begin now. " 

Mercyhurst is dedicated to educating and preparing ALL our graduates for productive careers. 

We have developed partnerships with the Verizon Foundation, PNC Bank Foundation, Conquer 

the Canyon, and private donors. The next step for the AIM program is to fund and launch an 

Internship program for our seniors and provide job coaches as needed to prepare them for the 

workplace. 

Mercyhurst plans to share our best practices, the Four Domains, applicant rating form, three-tier 

stratification of services, faculty training programs and peer mentorships in a white paper and 

professional development session this coming April during Autism Awareness Month. We have 

invited the 16-member colleges and universities in the Conference of Mercy Higher Education as 

well as all post-secondary institutions in the tri-state area of northwestern Pennsylvania, western 

New York and eastern Ohio. 

Some of the innovative components of the AIM Program include the following. 

The AIM Program has identified and developed four domains that are essential for students on 

the spectrum to be successful in higher education and vocational endeavors. 

• The first is Academic Social Progress (ASP). In this domain we track class 

participation, appropriate social engagement within the classroom, and preparation for 

course materials. 

• Second, Independence tracks things such as living independently, organization, 

preparation and selection of meals and managing money. 

• Third is Social. Here we monitor the social interaction within the program, on-campus, 

and in the community. 

• The last domain is Emotional where we monitor student's ability to adjust to the 

rigors of college life. 

We track these domains and program participation and have developed an AIM GPA that assists 

us in evaluating student progress and compare students of a given cohort. 

Students who participate in the AIM program gain access to numerous services to assist them in 

being successful on campus. 

• Some students choose to live in specialized AIM housing where a Hall Director trained in 

ASD, lives in a communal environment with the students. Thc students live with another 

person, yet have their own bedroom, which is an uncommon luxury at Mercyhurst. 

3 
88 


Insert offset folio 38 here 80405.038

Committee on 

.MERCYHURST 

and Government Reform .1 UNIVERSITY 

• The Peer Mentoring Program consists of students meeting with a Peer Mentor Volunteer 

at a minimum of2 to 4 hours per month. AIM Students also have a separate opportunity 

to be mentors themselves to adults with more severe disabilities at a local agency in Erie. 

• Social Skills Training. 

• Individualized Course Planning 

• Weekly meetings with Program Academic Counselors 

• Peer and graduate-level tutors 

• Notetakers 

• Testing accommodations 

• Availability ofassistive technology (i.e. Kurzweil readers and iPads) 

• Priority registration 

• Social group outings 

o Washington, DC 

o Grand Canyon National Park "Conquer the Canyon" 

o Niagara Falls National Park 

o Other local and campus outings 

The AIM Program has been cited as a model program and has implemented a majority of these 

components with limited resources and opportunities beyond of the commitment of the 

university. It is our hope that a strong consideration is made for allocation of government 

resources to fund programs like the Asperger Initiative at Mercyhurst that assists students not 

only in receiving a college education, but also in helping them become productive citizens in our 

society. 

Thank you again for your time and this opportunity. 

4 
89 


Insert offset folio 39 here 80405.039

.MERCYHURST 

Committee on Oversight and Government Reform • UNIVERSITY 

The Asperger Initiative at Mercyhurst (A.I.M.) 

AIM in the news 

http://www.mercyhurst.edullearning-differences/asperger-supportlin-the-newsl 

Brad McGarry and AIM Program featured in Chronicle of Higher Education (p.43) 

http://www.saabnational.org/docs/convergence20 12.SAAB F eature.pdf 

Mercyhurst joins global initiative to shine blue light on autism 

http://www .mercyh urst. edu/news/news-re leasesl artie lel?artie Ie i d=25 91 

AIM #3 Ranking 

http://www.bestcollegesonline.com/blog/20 11/05/251 I O-impressive-special-college-programsfor-students-with-autisml 

The Conquer the Canyon with AIM News Release 

http://www.mercyhurst.edu/news/news-releases/article/?article id=2764 

Information page for Conquer the Grand Canyon with AIM 

http://www.conquerthecanyon.com/mercyhurst/AIM 

Y ouTube link for Conquer the Canyon 

http://www.youtube.com/watch?v=14WcI38TXU8&feature=youtu.be 

Demand surges for Mercyhurst's autism summer program 

http://foundations2011.blogspot.com/2011/07/mercyhurst-featured-article.html 

Asperger Initiative Continues to Grow 

http://merciad.mercyhurst.edu/contentiaspergers-initiative-continues-grow 

Washington Watch Grant for the AIM Program 

http://www.washingtonwatch.com/biIIs/show/ED69730.html 

Story about AIM profiling one of our recent graduates 

http://www.pottsmerc.com/article/20 1202021NEWS/120209888/-1 ILiFE/pa-university-programhelps-autistic-students?mobredirect=true 

Mercyhurst AIM Program Ranked Nationally 

http://www.mercyhighered.org/newsmercyhurst.html 

5 
90 

Mr. MEEHAN. Mr. Carley, you are now recognized for your testimony. 

STATEMENT OF MICHAEL JOHN CARLEY 

Mr. CARLEY. Mr. Chair, I would ask for just a little bit of leeway, 

since having only been asked to speak Monday morning, I haven’t 

had the same amount of editing time as many of my colleagues. 

Just a minute or 2 would be most—— 

Mr. MEEHAN. Do your best, and we’ll work with you. 

Mr. CARLEY. Thank you very much. 

As the executive director of both ASTEP and GRASP, and on behalf of both my boards, I would like to thank all the members of 

the committee here for having me to speak. 

I bring two concerns, both of which shed light on a population 

of people on all sides of the spectrum and all sides of the many controversies that exist in the autism/Asperger world who are simply 

overwhelmed. And I hope to be able to stress the negative consequences on us all when so many are enduring financial, 

logistical, and emotional stresses of a magnitude that might surprise you. 

My first concern is the more standard apprehension concerning 

the direction and prioritization of government funding. Currently 

the emphasis is on government research, and there is good herein, 

as well as fairness, for there is a vastly disproportionate amount 

of research funding for autism when compared with infinitely less 

prevalent conditions. 

All that said, however, research is based on the future and not 

where our greatest need lies, which is in the present. Today the 

services we collectively offer is paltry in comparison with the true 

need that’s out there right now. 

The majority of our families still do not have the appropriate 

services, interventions, or educations available to their children, 

and adults on the spectrum are starved for appropriate housing, 

therapies, and employment opportunities. And if fiscal concerns are 

indeed something which we measure things by, then let’s think of 

that adult who if they are able in a job employment program to become a taxpaying, productive member of society rather than existing on government support seems to me like a financial no-brainer. 

And for those who are not able to participate in programs like that, 

think of the productivity that is lost because the parents can’t 

produce like they used to. Why we never consider the fiscal costs 

of not providing services is still a mystery to me. 

And I disagree with some of the testimony we have had here before. We are not amidst a health crisis. We are amidst a services 

crisis. 

My second concern has to do with how we implement whatever 

direction we take in terms of the tone or the language being used. 

Now, tone or language may seem like PC, self-help, feel-good spin 

to a lot of people, and I understand that, but it’s not for someone 

on the spectrum who grows up having to hear words like ‘‘cure,’’ 

‘‘disease,’’ ‘‘defeat,’’ and ‘‘combat,’’ words that have no medical basis 

given the genetic component of autism. For though we may improve dramatically, we’re born with this, and we will die with this, 

and such negative self-imagery makes self-esteem so much harder 

91 

to achieve for an individual who is at a psychological disadvantage 

enough as it is. 

We have to remember that the majority of this population now 

can read what’s being written about them and hear what’s being 

said about them. And as we all grow, whether on the spectrum or 

not, we need to hear about what we can do, not what we can’t do. 

Autism is simply more complicated than any of us want it to be. 

Try as we may, we cannot sloganize it, we can’t dumb it down. And 

historically our refusal to accept the complexities of this vast spectrum has created a competition of suffering amongst ourselves that 

has made the autism world and its politics one of the most emotionally unhealthy atmospheres you could ask to work in. Is this 

because we’re all so overwhelmed, thanks to unmet service needs, 

to process these different lives in a more productive manner? I 

think the answer is yes. 

Now, I was lucky. When my then 4-year-old son and I were diagnosed with Asperger’s in late 2000, I was at a point in my life 

where I had a family, I had a career. It was a weird life. I was a 

starving playwright by night and a minor league diplomat during 

the day, working in such places as Bosnia and Iraq. But there was 

proof that there was possibility within my son’s diagnosis. Most 

other parents might have resorted to praying that their child could 

have a future. Thanks to my diagnosis and a life lived up to that 

day, I had the advantage of evidence-based conviction, not hope, 

and self-esteem was the most formulative factor in all of that. 

Now, granted, I am at one end of the spectrum, and I understand 

that to many parents I will seem like the possible and not the probable. But I also would never invalidate that the prognosis for me 

was once not so good, nor that my behaviors haven’t dramatically 

changed for the better. And what is considered probable has 

changed immensely over the last 10 years, and that is a credit to 

everybody working in the autism world. Self-esteem again was the 

most predominant quality that got me to that point, because, unlike other people on the spectrum who are brilliant, I don’t have 

that kind of a brain. 

And lastly, it’s an ethical mistake whenever we sacrifice the possible in the name of the probable. As national nonprofits like government thus far—— 

Mr. MEEHAN. One question. Is there one more point you wanted 

to make, or is this your conclusion? 

Mr. CARLEY. This is the concluding paragraph. 

Mr. MEEHAN. Take your time. I didn’t mean to rush you that 

much, but I thought you had another whole point you were developing. 

Mr. CARLEY. I’m good, sir, no. 

As national nonprofits like government thus far, we, too, have 

often failed to lead. Our centrists have frequently been too hesitant, but more damaging are the militants on opposite ends of the 

controversies who have pandered to their members’ anger, anxiety 

or depression with alarmist rhetoric, misinformation, fight talk, 

and all this encouraging the search for a bad guy, somebody to 

blame, thereby pouring gasoline on the fires of the people that are 

looking to us for leadership instead of helping them with messages 

of acceptance, respect, openness to a path that may be different 

92 

from what was expected, and helping them get the services they 

need. 

I ask this administration as well as our community to lead and 

to help these constituents in such a way that will not just be acceptable to the polls or pander to any ill-conceived notion that an 

injustice was done or that there’s something in the water. I cannot 

stress enough my disappointment that the conversation on vaccines 

is still evident. Despite the immense—— 

Mr. MEEHAN. Mr. Carley, at this point, I appreciate that, but in 

respect to each of the panelists, I have given you a significant period to go on, but please appreciate that we will take your testimony in its written form and ensure that it is part of the written 

record. Thank you so much. 

[Prepared statement of Mr. Carley follows:] 

93 


Insert offset folio 40 here 80405.040

As the Executive Director of both ASTEP and GRASP, the latter being the largest 

chapter and membership organization in the world of adults diagnosed along the 

autism spectrum, and on behalf of both my boards, I would like to thank all the 

members of the House Committee on Oversight and Government Reform for inviting 

me to speak here today. 

My concerns are twofold; the first being the more standard apprehension 

concerning the direction and prioritization of government funding. Currently the 

emphasis is on research, and there is tremendous good herein. The scientific work 

being conducted on spectrum wiring, serotonin levels, or nerve function will 

someday teach us about the brains of farmers, executives, and machinists, in 

addition to those of people on the spectrum. And yes, there is a vastly 

disproportionate amount of research funding for autism when compared with 

infinitely-less prevalent conditions. However, we ask that if research is going to be 

the primary focus, that government lead, and not pander. 30 million dollar grants 

given to study the merits of chelation therapy-as a bone to groups who believe 

people like myself are chemical accidents caused by vaccines-only boost the 

perceived legitimacy of these groups so that now we see outbreaks of preventable 

diseases, especially in California and Minnesota. This is not serving the American 

people. 

All that said, however, research is geared towards the future, and not where the 

greatest need lies, which is in the present. Today, the amount of services we 

collectively provide is like one page out of War and Peace when compared with 

what's needed. The average working family with a child with autism is 

overwhelmed, as are the average adults on the spectrum. The majority of families 

still do not have the appropriate services, or educations available to their children, 

and adults on the spectrum are starved for appropriate housing, and employment 

opportunities. 

My second concern is less specific, but greater in spirit, and that is having to do with 

how we implement whatever direction we take, in terms of the tone, or the language 

being used. Call it, if you will, an emphasis on the singer, not the song. 

Tone, and language may seem like pc-nonsense semantics to many, but not to 

someone on the spectrum who grows up having to hear words like "cure," "disease," 

"defeat," and "combat" -words that have no medical basis given the genetic 

component of autism (for though we may improve dramatically, we're born with 

this and will die with this) and given the harm these words cause there is also no 

ethical basis for their usage. Especially when the words come from not just 

misguided ad campaigns, but coming from people who might genuinely love us, 

people who use these words because they learned them from experts on TV ... Such 

negative self-imagery makes self-esteem so much harder to achieve for an individual 

who is at a psychological disadvantage enough as it is. We have to remember that 

the vast majority of this population can read what is being written about them, and 
94 


Insert offset folio 41 here 80405.041

hear what is being said about them. And as everyone of us grows, spectrum or not, 

we need to hear about what we can do, not just what we can't. 

Autism is more complicated than any of us want it to be. The spectrum ranges from 

many famous people now being diagnosed in retrospect to the severely challenged 

non-verbal individual who may never hold down a job or enjoy an intimate 

relationship. And when the controversial and highly criticized DSM-5 comes out, we 

won't even be referring to it as a spectrum. We will all be diagnosed with autism, 

further disallowing our human need to compartmentalize. There are good things 

and bad things about this last point, but historically this vast spectrum, and our 

refusal to accept its complexities, has created a competition of suffering that has 

made the autism world and it's politics one ofthe most emotionally-unhealthy 

atmospheres you could find. The sooner we reject the ability to communicate as the 

measuring stick of happiness the better. 

My son and J were diagnosed one week apart from one another in late 2000. Having 

already started a family, and had a career, I did not switch to praying (once we got 

the news) that my son could have a future. Thanks to my diagnosis, I knew he could. 

I had the advantage of evidence-based conviction, not hope. Granted I am one end of 

the spectrum, but I would also never invalidate that the prognosis for me was once 

not good, and that my behaviors have certainly changed. J am perhaps to many 

parents the possible and not the probable. But my relative luck is greatly due to my 

youthful, stubborn instinct that I could not think myself lesser because I processed 

thoughts, emotions, and experiences differently. One certain law of ethics is that we 

make tremendous mistakes when we sacrifice the possible in the name of the 

probable. My son's initial prognosis too, twelve years later, has since been discarded 

for a better outlook thanks in part to the positivity of the supports he has enjoyed. 

He has had good songs, but great singers. 

As non-profits we too have often failed to lead. Our centrists are often too central, 

but more damaging is that the militants on opposite ends in particular, have 

pandered to their members' anger, anxiety or depression with alarmist rhetoric and 

fight talk-thereby pouring gasoline on their fires-rather than help them with 

messages of acceptance, respect, and openness to a path that may be different from 

what was expected. J ask this administration as well as our so-called community to 

lead in a way that will not just be acceptable to the polls, but that will also guide 

people on the spectrum and their loved ones on the path to building lives with the 

potential for emotional strength. Despite the immense progress we've achieved 

surrounding what is summoned by these words "autism" or "Aspergers," our 

members on all sides are overwhelmed with financial, logistical, and emotional 

stresses that cause them the aforementioned anger, anxiety, or depression; real 

enemies that lead to costly mistakes, and that increased services would dramatically 

reduce. Thank you for listening. 
95 


Insert offset folio 42 here 80405.042

Michael John Carley received his B.A. from Hampshire College in 1986 and his M.F.A. 

from Columbia University in 1989. In addition to being an author, he serves as both the 

Executive Director of GRASP, and the Executive Director of ASTEP. 

As the Executive Director of GRASP, the largest organization in the world comprised of 

adults on the autism spectrum, he has made over 90 speaking engagements to 

conferences, hospitals, universities, and health care organizations. 

As the new Executive Director of ASTEP, he works with corporations helping them to 

understand the needs of their spectrum employees and has spoken at several Corporate 

Diversity conferences. 

He has appeared in the media widely, most notably in the New York Times, Washington 

Post, NY Newsday, the London Times, the Chronicle of Philanthropy, the Chronicle of 

Higher Education, NEWSWEEK OnAir, ABCNews, BBC News, Huffington Post, 

Exceptional Parent, Psychology Today, and on radio with Terry Gross' Fresh Air, and 

The Infinite Mind. NPR News also aired a 12-minute story in June of2006 that featured 

he and GRASP. Carley was also featured in the documentary, "On the Spectrum." His 

articles have been published in magazines such as Autism Specrum News, Autism 

Spectrum Quarterly, TAP (The Autism Perspective), Autisml Asperger Digest; and in 

newsletters such as the OARacle. His first book, Asperger's From the Inside Out: A 

Supportive and Practical Guide for Anyone with Asperger's Syndrome (Penguin/Perigee), 

was released in April, 2008, and he has recently completed his second book, The Last 

Memoir of Asperger's Syndrome (TBD). 

He was the inaugural FAR Fund Fellow in 2003; and he has since received NYFAC's 

Ben Kramer Award (2008), the BClD Award for Service (2009), Columbia University's 

Herbert M. Cohen Lecture (2011), and Eden II's Peter McGowan & John Potterfield 

Achievement Award (20 II). 

Until 2001, Mr. Carley was the United Nations Representative of Veterans for Peace, Inc. 

In that time, he was known primarily for his work in Bosnia, and in Iraq as the Project 

Director of the internationally acclaimed Iraq Water Project. Prior to 2001 he was a 

playwright who enjoyed 15 productions and 10 readings of his plays in New York. 

Along with his (then) 4-year old son, he was diagnosed with AS in November of2000. 

He lives with his wife, Kathryn Herzog, and 2 sons in Brooklyn. In his spare time, he 

coaches travel baseball. 
96 

Mr. MEEHAN. Mr. Ne’eman, at this point in time, I recognize you 

for your testimony. 

STATEMENT OF ARI NE’EMAN 

Mr. NE’EMAN. Thank you, Mr. Chairman, Ranking Member 

Cummings, and esteemed members of the committee. 

My name is Ari Ne’eman. I represent the Autistic Self Advocacy 

Network, an organization run by and for autistic people. I also previously served on the Interagency Autism Coordinating Committee. 

And let me just say, as an autistic person and as a taxpayer, I 

want to thank you for giving self-advocates a seat at the table 

today. 

I would like to begin with a story. Earlier this year, I was visiting a service provider in New York, and I happened to meet a 

young man my age. We will call him Joe, and Joe is autistic, like 

me, but unlike me, Joe doesn’t speak. He had come in with his father to try and find a job, and I had the chance to sit down with 

him and his dad and ask them questions. And Joe, despite not 

speaking, found ways to be very actively involved in that conversation. He pointed at what he was interested in, shook his head at 

what he wasn’t. He had plenty to say, and few people had ever 

bothered to pay attention. No one had ever given Joe the simple 

support of a communication device. That technology exists. It has 

for years. We just don’t invest in it. And I think about Joe a lot 

at times like this because the current autism research agenda 

largely ignores his needs. 

I am a big believer in the old maxim, in God we trust, everyone 

else please bring data. So if you don’t mind, I would like to point 

to some of the data in the autism research agenda and see what 

it shows us. In 2010, NIH spent about $217 million on autism research. Of that, only 2 and a half percent went to research on improving the quality of services; only 1 and a half percent went towards research on autistic adults and our needs. Now, when you 

compare that to the percentage of the research agenda focused on 

causation and biology, the attention paid to the needs of us here 

today is laughably small. 

I am not here to speak for all autistic people. That is impossible. 

But I am here to speak for the right of every autistic person to get 

the support they need to speak for themselves and not to be written off as victims or burdens. 

Now some have tried to justify the lack of attention paid to services and adult issues through talk of an epidemic. I don’t happen 

to subscribe to that theory, but if we wanted to study it and evaluate it scientifically, a very simple step we could take would be to 

research the prevalence of autism in the adult population. 

The United Kingdom, in fact, conducted that study and found a 

comparable rate of autism in adults as in children. We should be 

doing that here, and regardless of the result, we would gain valuable information on supports for autistic adults. 

I want to highlight three additional points, noted at more length 

in my written testimony. First, I think it is very important to 

stress that there are really severe racial, income, and gender disparities in the autism world. As was mentioned earlier, African 

American children are diagnosed significantly later than Caucasian 

97 

children. Department of Education data has also showed us that 

low-income and minority youth on the spectrum have the lowest 

rates of employment and higher education access in the years after 

they leave school. 

We also know that gender plays a big role. Many believe that the 

4 to 1 ratio of boys to girls being diagnosed is at least partially a 

self-fulfilling prophecy with girls less likely to be identified because 

they don’t fit the stereotype. 

Second, I think it is important that we recognize that when we 

talk about autism services, we are mostly talking about services 

with the word disability, not autism on them. So we have to talk 

about programs like IDEA and Medicaid, and a few words on Medicaid in particular. The vast majority of disability services are financed through Medicaid. If that program were block granted or 

otherwise significantly cut, those services would be devastated. I 

cannot emphasize this enough. Ending a robust Federal commitment to Medicaid means ending any meaningful chance we have to 

support autistic people. 

Third and finally, I want to stress the importance of building a 

pathway to employment for my community. Our current disability 

service provision system actually makes it very hard for people who 

want to work to enter the workforce. If you are leaving school, you 

have to choose between going without support or committing to exit 

the workforce in order to qualify for SSI and Medicaid. Quite 

frankly, that is just bad public policy. If you want autistic people 

to be taxpaying citizens, and we want to be, we need a service system that emphasizes employment. 

The Affordable Care Act has made some progress toward those 

ends. Another good example of what more we could do can be found 

in the TEAM legislation, a bipartisan collection of bills on transition for youth with disabilities introduced by Representatives Harper and McMorris Rodgers. 

In closing, I want to point out that historically most disability 

movements have a certain life cycle, and autism is no exception. In 

the beginning, most public attention focuses on questions of cure 

and causation, but with time, both advocates and policymakers realize that the real issues relate to helping support and defend the 

civil rights of people today. Now, in autism, that process is still 

going on, but I am confident, I am confident because I believe this 

is a civil rights issue, and I believe that the United States of America can guarantee the civil rights of all of its citizens. 

Thank you very much. I look forward to your questions. 

[Prepared statement of Mr. Ne’eman follows:] 

98 


Insert offset folio 43 here 80405.043

Key Issues: 

Chainmm 

U.S. House Committee on Oversight &. Go\/ernment Reform 

November 29th, 2012 

Federal autism fhnding is in ofrc-balandng to increase allocation of funds ft.KllS,,:d on 

impnn ing the quality of sCfvl\:t;-provision and addressing'. the needs of Autisth: adults and Gdokscents. 

The Autistic adult population has been largely ignored in aulism pl)lky discussions date rutuf~ tcucrul 

policy must \'\'ork to lry ,md address this 

Signiticant rn~ia!, gender and income dispnritics c:xist in to autism diagnosis and 

I"h(: rVledicaid program the primary flnancing mechanism fix autism und disability related 

prO\ ision and SUpp011, The fcdt~ral role in rcm~1ins absolutel) crucial and mu:;t continue to 

emphasi;:c transformation lo\\(.mls more imt't'Tatcd fix people v,lth Jisabi!iiie~ 

Ranking Mcmb~r Cummings anJ cstccml,'d members of the Committc~" thank you for the im itation to speak 

you toda) on federal policy regarding the autism spectrum, My nam~ Ad Nc'cman and 1 repres~nt tl1\,~ Autistic 

Network (ASAN). the leading national advocacy organization run by and for Autistic adults speaking for OUl'sdvcs, As an 

Autistic person, j \\'ant to begin by thanking the committee jn particular fbr hearing lrorn self'..adyocatcs -- that not ah\ 3YS d 

given in the autism \-\urld and am protCmndly grateJlli to both the m,~jority lInd minority memb~rs clOd stall for ensuring that \\1,.' 

at this hearing about us. 

Over th~ last decade, we have scen grcming public attention tmvards the autism spectrum, jn part driven by rising rates of 

diagnosis Although additiona! public attention has provided an oppm1tmit)' f~}f greater visibility to the idea of autism, such 

visihilit) bas not translmed into att~ntion or rcsoun.):s on the tlwt matt!.!r most to AutistlC peopk and OUf 

are Hlrict;, of reasons f()l' this '" one of the of\\hich b history oftmder w fcprCsclltation ()L1(iults the 

<Jut!sm spectrum in policy convcrsatiuHs about us, Additionally. onc of the most important things to n.:rn¢mbtT in discussing. 

nxleral P01iCY regarding autism that tht~ \Hst m[liority ofpubJicJy financed that 1h05C of us on autism spectrum 

inkract the word disability rather than \·vonl autism. a result 1cstimollY will touch on both federal puliey 

that is specific to auti:>m as \vell <1:) general disability policy 

and our families, 

such as Medicaid, that significantly impact Autistic pcoph: 

t1H.; mujority of th1crul attl:ntion ibcuscd on autbm in partil.:ldur t:omcs in the foml nf1'cscarch nmuing. \Vhik' have b~en 

pleased to an increase jn kderal autism research dollars over the course of the past decade, it important that 

cvaluatl': hm" \\c "re spending that money. I am a hig bdicvl,.'f in the l)ld maxim. '"In God trusL c\oc1')Ol1e pkasi..' brint'! 

data." so Jet's tum to the data ,UlU what shons us 

()fthc approximatcl) million dollars tbm the !'iationa! Institutc" oflkulth (NIH) inv.,;sh~d autism research in 2010 {the 

most yt'ur for \~hh,'h data is Hvailabk), onl) meager went 1(1\vards impJ'(}\ illg the (jualIt) and SUpPDr1S 

available Autistic pcopl-c and our families. On!) ! jO;o m:nt toward;; research that addresses thB needs of Autistic adults. \\,h~n 

companxl to n:s¢.:urch on qu~stions of causation, etiology and hinlt)[!y and diugno::;is. tll',;' rcnx~ntagc Qflhc autism rl..'scl!!\::h agt'llCla 

tbcuscd on the actual needs of Autbtic people in order to imprO\c their quality oj' life minbcuk. We are pro-research, but the 

agenda must be n:-balancl..'d tn incorporJtc bllth causation ane! qualit) <.)1' life, 

matters. It math..:rs more than can possibly but I \vill to do so. nonclhe1css. I r\,';m~mher recently visiting 11 

service provider in Manhattan earlier tili:') to !cam more about 110\\ can improve disability cmplo)mcnt outcomes f{w 

people with sewfC disabi1itics. \\'hi!c I was lht:rc, ~\ non~spcuking Autistic man in his mid~20s cam\,'; in with his fhther 
99 


Insert offset folio 44 here 80405.044
100 


Insert offset folio 45 here 80405.045

and supports th;n 

would gain \aluable lOfoll11Cllion not onl) on th(: question of" hcth~r or not nut ism 

support nct:ds of the older nUh\.! l..:ommun!l) 

1) 

all 

l\))1lP,lfCd 

lhe 
101 


Insert offset folio 46 here 80405.046
102 

Mr. MEEHAN. Thank you, Mr. Ne’eman. 

And thanks—thank you to each of the panelists. 

Now, in regular order, the chair will recognize Mr. Burton from 

Indiana. 

Mr. Burton. 

Mr. BURTON. First of all, I want to thank you all very much for 

being so patient. I mean, we grilled those people for, what, about 

3 hours, and you had to sit there, so I want to tell you I am 

amazed that your posteriors could survive that long. That is the 

first thing. 

The second thing I would like to say is that Abraham Lincoln 

said, Let the people know the facts and the country will be saved, 

and one of the problems that we have is that I don’t think there 

is enough information getting out to the people who are not affected. I was like that; I didn’t know much about autism until my 

grandson became autistic. And then all of a sudden it became a 

cause celebre for me, and I was fortunate I was chairman at the 

time, so I had the resources at my disposal to do something about 

it. 

So I asked my staff, I want you to get a copy of this whole hearing, every one of you. You can get it on the Internet. What is our 

Internet web site? Governmentoversight.house.gov. 

Governmentoversight.house.gov. And I would urge all of you to disseminate this whole hearing and try to get as many people as possible to look at that because more people, the more people that 

know what is going on and understands it, the more likely we are 

to get some kind of positive result out of the FDA and HHS. 

And they get a lot of money. I don’t know why in the world they 

can’t allocate more money for this whole issue, and that is why it 

is important that you keep beating the drum. 

I am retiring. This is my last year in office here. I have been 

here 30 years, but my last year, but I want you to know, any of 

you that have a need, any of your organizations, you get a hold of 

me, and I will do anything I can to help you because this is something I feel very strongly about. 

Now the other thing I want to talk about is we have what is 

called the Vaccine Injury Compensation Fund. It has $2.4 billion 

in it, and it is not being disseminated to people who have damaged 

children. And it is because we have a system, which was supposed 

to be user friendly, that is not user friendly. We have special masters that are saying, you know, we can’t prove or can’t make sure 

that this person deserves any money out of that fund, and so I 

think it is important that we beat the drum on that because there 

is $2.4 thousand million in there, and there is a lot of money for 

people who really could use it, and that was put in there by the 

pharmaceutical companies to help people in a user-friendly way to 

solve these problems. 

I think that is about all I have to say, except I am very sympathetic to all of you. We have had I don’t know how many hearings 

on this subject over the past decade, but the problems just keep 

getting worse and worse and worse, and we really need you not 

only to be the foot soldiers but the people that are going to lead 

the charge to make this a cause celebre for everybody, even those 

who aren’t affected by autism. It will affect everybody—autism, 

103 

that knows anything about autism because these people are going 

to live, as we said before, you have all mentioned this to a degree, 

these people are going to live for some time, and they are going to 

be a burden not only on the families but on society. 

We had people come before my committee whose children they 

were afraid of, they would lock the doors when the kids got out of 

control because they were so big, people that mortgaged their 

homes and lost everything they had taking care of their kids. That 

is not widely known, and that is why it is important that you guys 

keep beating the drum and get the message out there, not just for 

your family but for everybody in our society. 

Thank you, Mr. Chairman. I yield back. 

Mr. MEEHAN. Thank you, Mr. Burton, and thank you for your 

passionate advocacy on this issue for your tenure, and we genuinely appreciate your leadership and look forward to hoping that 

we can continue to carry the mantle. 

At this moment, let me recognize the distinguished ranking 

member, Mr. Cummings. 

Mr. CUMMINGS. Thank you. 

I want to thank all of you for shedding so much light on the subject. You know, I think my frustration comes with regard to trying 

to make sure that we take your pain, as I was telling you, Mr. 

Wright, that has now been turned into a passion, to make sure you 

carry out your purpose to help the folks that you want to help, and 

I am sitting here trying to figure out, how do we effectively and efficiently use your energy and your passion so we get something 

done? 

You know, I was listening to you, Mr. Blaxill, and basically, if 

I understood you correctly, it seems as if you feel that there has 

been a lot of game playing, and I don’t know if you used the word 

‘‘fraud,’’ but you came pretty close, and, you know, as I listen to 

you all, I think about how these numbers are increasing. We are 

marching into a very, very serious situation. 

And I know, Mr. Ne’eman, you said don’t call it an epidemic or 

whatever you said, but this is serious stuff. You have got—and you 

all know, but I am just listening to you. I am sure you have got 

parents who have to give a lot, and so their productivity is affected. 

We have got people who are struggling with this and not getting 

the services that I guess could make them even more productive, 

am I right? Is that what you are saying, Mr. Carley? 

Mr. NE’EMAN. It is, it is. And I do want to reinforce. This is, in 

fact, very serious my concern with the rhetoric of epidemic is that 

it stands in contravention to a growing amount of science exploring 

whether or not we are seeing a rise in incidence or a rise in diagnosis, but, B, I am concerned about the population that Congresswoman Norton mentioned earlier, many of whom are my members 

and Mr. Carley’s members, who have often gone for decades without diagnosis or who have been misdiagnosed. The perception that 

autism is some recent new thing has been very damaging in part 

because it has meant when we talk about autistic adults at all, 

which we do very rarely, we never talk about their needs. We always talk about it as something very recently on the horizon or 

about to be on the horizon, and we have to recognize this is a very 

serious situation. It is a very serious situation now, and it is a criVerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00107 Fmt 6633 Sfmt 6633 C:\DOCS\80405.TXT APRIL
104 

sis not of epidemic or public health but of unmet need and of 

human right. 

Mr. CUMMINGS. And that goes to my very question, and maybe 

you can address this, somebody. Tell me the kind of services that 

are lacking that you would like to see provided, again so that we 

can try to figure out how we can use our dollars effectively and efficiently to not only—I think it was you, Mr. Carley, who said, you 

know, yeah, we have got to look at the future, we have got to do 

our research—somebody said this—but we have got to also make 

sure that we deal with the now because the people in this room, 

I take it, are going to go home, and they are going to have to wrestle with this with love and affection 24/7, so while they are—I 

guess they have two situations. One, they are reaching into the future and saying, you know what, we want to understand what is 

happening here, we want to know the causes, we want to see if 

there are cures or whatever, we want that; but we also need some 

help right now, right now. And what help is that? I guess that is 

what I am trying to get to. 

Mr. CARLEY. It is a myriad of things. I mean, for parents of more 

challenged children, we are talking about ABA therapy in the 

home. We are talking about a variety of educational strategies. We 

are talking about an appropriate education and perhaps, you know, 

just some aftercare if the child is significantly challenged enough. 

For someone that isn’t as challenged, we need much more enforcement of IDEA in the schools. The schools are still able to circumvent that. I know it is budgetary, but it is still a problem that 

needs to be fixed. 

Adults themselves, they need appropriate housing. Adults need 

therapeutic options. When you grow up living in the behavioral minority and you are living in a world that confuses you a lot, you 

need to talk to somebody about that, but most of all, especially for 

adults, those employment programs, putting them into being productive use. This is not a population of people that are short on 

brain cells. It is social deficits. It is executive functioning issues. It 

is hidden curriculum issues. It can be put to work. 

Now, if I may, though, just backtrack because, again, we have 

heard so much about prevalence rates and the confusion of where 

did these numbers come. Not once have I heard today the fact that 

the DSM–IV, which is what diagnoses people and constructs what 

the criteria is for who deserves a diagnosis, not once has anybody 

said here today that one of the reasons for the expanding diagnosis 

was the expanding criteria to what meets a diagnosis. 

First off, the inclusion of Asperger syndrome in 1994 certainly 

opened up the book to a plethora of people, including myself, who 

never otherwise beforehand would have qualified for an autism 

spectrum disorder, but even traditional autism, the definition was 

changed in that book. 

I may get these numbers wrong, but in the old book, I believe 

it was six mandatory criteria for a diagnosis of autism. So if you 

got five but not six, back in those days, it was mental retardation. 

Now I believe it is eight optional out of a field of 16 possible criteria. That blows those numbers off the roof. 

Mr. CUMMINGS. Thank you. I see my time is up. 

105 

Mr. MEEHAN. Mr. Cummings, it does seem to be. Would you 

want to be recognized for a minute if Mr. Blaxill has a quick comment to be made? 

Mr. CARLEY. I would like to operate on the service question if 

possible. 

Mr. BLAXILL. Excuse me, I was talking. 

Mr. MEEHAN. If you can, we are trying to extend a courtesy to 

allow this important question. Mr. Blaxill, if you will, you did raise 

your hand. 

Mr. BLAXILL. Thank you. I want to raise two points just to correct the record. First of all, the 1 in 88 numbers, one of the problems with what the CDC does is they don’t break out the categories, so we don’t even have the tools to inspect the claim that 

there has been diagnostic expansion if the inclusion of Asperger 

syndrome made a difference. 

To the extent there is data in the CDC numbers, Asperger syndrome is a very small proportion of the total categorized cases, less 

than 10 percent, so the notion that we have had diagnostic expansion, you know, that dog don’t hunt as an explanation. 

And DSM–IV, if you actually read what the designers of DSM– 

IV wrote about it, they said it was supposed to be a corrective narrowing of the diagnosis. That was their intention. So I think this 

notion that we have got diagnostic expansion is a dangerous one. 

Another point I want to make, and I didn’t have a chance to 

make it, the great unmentionables, vaccines and mercury as causation factors. If we have an environmental epidemic, which is what 

I think common sense will tell you we have, we have to look at 

plausible candidates that could possibly explain the inflection point 

that we saw in 1990, and so far, the best candidates we have are 

mercury. And there is a lot of evidence that supports mercury as 

a causative factor and a damaging factor, and the vaccine issue is 

a tough one. There are, contrary to what CDC representatives said, 

there have been no studies of the total health outcomes of an 

unvaccinated population as compared to a vaccinated population. 

The studies that have been done cover only one preservative and 

one product. We haven’t looked at combinations. We haven’t looked 

at the totality, and those studies are often done poorly. And what 

we hear about are the studies the CDC has been done, which I 

would argue, there has been statistical trickery, but if you actually 

look at the record, mercury, for example, there was one paper that 

was written showed that 43 out of the 58 studies on mercury and 

autism or heavy metals and autism were positive. It is the other 

15 that we hear about in the press. 

So the scientific record is very supportive of the environmental 

concerns that parents and families have. It is complicated. There 

is controversy, obviously. But the notion that the controversy is settled or that all the evidence weighs on one side, that is politics in 

science, that is not an issue of the evidence. 

Mr. MEEHAN. Thank you. 

Thank you, Mr. Blaxill. 

Regular order. I now recognize myself for 5 minutes of questioning. 

But, Mr. Wright, this testimony today has been revealing, and in 

many ways, what struck me has been the fact that we can have 

106 

been at this issue for so long, and there is such a wide divergence 

just even in the scientific definition of where we are, the accurate 

identification. You have spent a great deal of your time, resources, 

and passion in this issue. 

Now, one of the things I was trying to explore, and I know you 

have been discussing, we have got this Interagency Autism Coordinating Committee that the government has, but it seems to be 

missing the mark if we can be so far off on this. So give me your 

impression of what we should be doing right now. 

Mr. WRIGHT. What we need is a national strategic plan. There 

are many government agencies that are doing a lot of good things, 

but they are not necessarily together. The money is significant, but 

it isn’t necessarily spent in as thoughtful a way as possible. There 

needs to be a combination of the CDC, the NIH, and the FDA as 

an example to actually undertake the correct research, stay with 

it, especially in safety research on vaccines going forward, and 

there needs to be some place—it should be—there should be an assistant secretary of health. The ASH title has been around for a 

long time. Somebody has to coordinate all this activity and try to 

make—that is where you bring in services. The NIH doesn’t do 

services. They will just tell you that we don’t do services. CDC 

doesn’t do services. So you have got—but yet it is done inside of 

Health and Human Services, but it is not coordinated. So a national plan, a national strategic plan would be what I would advocate to try to pull that together. I think it is a very important 

thing. 

It also involves continuing medical education for pediatricians, it 

also involves going to medical schools. There is nothing. You know, 

mental conditions occupy a fraction of time in medical school. Then 

people go into practice, and what we deal with is a lot of ignorance. 

So you have to keep—that has to be organized. So that would be 

my fondest hope. 

Mr. MEEHAN. Mr. Badesch, did you have a comment? 

Mr. BADESCH. I would just suggest, with all respect, that the IF 

doesn’t coordinate. 

Mr. MEEHAN. I am sorry? 

Mr. BADESCH. That the IF doesn’t coordinate. And that until we 

recognize, as Mr. Wright says, that we have to look, this is a national societal issue. And you can’t have a body that is tied into, 

as Mr. Wright said, into a health research mode looking at this 

whole element of autism. The service needs are there, the civil 

rights issues. When you don’t have the Department of Education 

sitting at the table or every single parent and—— 

Mr. MEEHAN. Or Department of Labor might be another suggestion or even the Department of Justice. 

Mr. BADESCH. It has to be a coordinated body. And with respect 

to the administration, we have talked to them, and I think they understand that now. But it has to start, in our opinion, from moving 

IACC, which as Mr. Smith knows is a great concept, but it is in 

the wrong place, and it has to have a societal commitment that we 

are going to address this need as a lifespan issue from birth to 

death, and until then, we are not going to get anything. IACC— 

I have been the president of the Autism Society for a year and a 

half. IACC, despite what they say, they have never approached us, 

107 

so if they are doing a national plan, God love it, you would think 

they would approach the largest grassroots organization. I assume 

they haven’t approached most of us at this table. That is a major 

problem. 

Mr. MEEHAN. Mr. Blaxill, if I understood your testimony, you 

identified that there has been extensive research going on in something that you would suggest isn’t even relevant to the discovery 

of what is going on with the genetics, was I correct in that? 

Mr. BLAXILL. Yeah, that is correct. I mean, we have spent tens 

of millions, hundreds of millions on what I call the great autism 

gene hunt, you know, when common sense would tell you that if 

you have gone from 1 in 10,000 to 1 in 88, something is changing. 

Mr. MEEHAN. Who in addition adopts your position, and why 

would that issue not have been raised prior to today? 

Mr. BLAXILL. Well, I think it comes back to the strategic planning issue. When a group of us pushed for the Combatting Autism 

Act of 2006, one of the critical provisions of that was the idea of 

a strategic plan to make IACC and to make the NIH funding mechanisms accountable to the public. 

I spent 25 years in management consulting. I was a senior partner at one of the top management consulting firms in the world. 

If there is anything I can claim to be an expert in, and I hate to 

invoke expertise because that is often a way to keep the people out, 

but I am an expert in strategic planning. And I was asked to participate in one workshop at NIH, and I can tell you that the process 

that we were engaged in was an interesting one. It had nothing remotely—— 

Mr. MEEHAN. Were you shut out with respect to your commentary, or was there—— 

Mr. BLAXILL. It was just an occasion to gather a group of people 

for a meeting, and the leaders of the NIH did what they wanted 

to do in the first place anyway. It wasn’t accountable in any meaningful way. They didn’t—it was—you got into the details, but there 

was an attempt not to have a strategy. It was an attempt to defend 

the status quo. 

Mr. MEEHAN. My time is up, but you know one of the things that 

Mr. Issa has clearly stated the intention of this committee to continue to look at this, and that would be, you would arm us if you 

would help us with identifying the kind of questions that you 

would like to have asked if we have these same individuals from 

that coordinating committee sitting at this table, that would help 

us articulate in your voices the kind of inquiry that would shake 

that and produce a result that would help us deal just on the front 

end, and I am sympathetic to all your issues on the back end as 

well, but my time has run out, and so at this point in time—— 

Mr. WRIGHT. I would suggest that those answers might be urgency, goals, milestones, time frames, and passion. 

Mr. MEEHAN. In that order? 

The chair now recognizes Mr. Davis. 

Mr. DAVIS. Thank you very much, Mr. Chairman. 

And I want to also commend all of you for your patience, for your 

passion, for your interest, and for your hopes because notwithstanding the frustration that we all express, if you didn’t think 

there was some possibility that something could happen, you 

108 

wouldn’t be here, and that is an indication that wherever there is 

life, I have been told, that there is hope. 

You know, I was reminded of a poet who suggested that some 

people see things that are and ask, why; but I dream of things that 

have never been and ask, why not? It seems to me that you are 

saying, why can’t we have the services that we need? Why can’t we 

have the kind of diagnoses that are accurate and give us the best 

chance and the best possibility? Why can’t we even find—although 

we know it is difficult, we know that resources are scarce, that 

money is short, but we also know that priorities determine how we 

use whatever resources that there are, and so you are asking really 

all of those questions. 

I am one who believes that this fellow Sam Cooke was probably 

pretty accurate when he wrote the words about change coming, 

when he says that I was born by the river in a little tent, and just 

like that river, I have been running ever since. It may be a long 

time coming, but I know some change is gonna come. 

I can think of illnesses and the way we have handled them in 

the past, and maybe there wasn’t much hope. I remember living in 

a county where there was one physician for the whole county. Well, 

it took some time, but there is more than one physician in that 

county now. And so, quite frankly, you give me a great deal of hope 

that there is possibility that when we add all of the factors together and when the American people will have spoken, we will see 

some movement, and we will see some possibility. 

Mr. Ne’eman, let me ask you, you mentioned this whole business 

of different kinds of disparities, which is something that I have 

been dealing with all of my life. Could you speak a little bit more 

and elaborate on what those disparities are and how you see them? 

Mr. NE’EMAN. Absolutely. So we know that AfricanAmerican and 

Hispanic children are diagnosed later in life. It was mentioned earlier in the hearing that we see lower rates of diagnosis in the Hispanic population, and I really thank you for asking that question, 

Congressman, because it gives us an opportunity to call attention 

to the fact that we aren’t doing a very good job of cultural competency in diagnosis for English language learners, for racial and 

ethnic minorities, for low-income communities, for women and 

girls, and also particularly for adults. 

When we look at insurance coverage and efforts to address insurance coverage needs for individuals on the autism spectrum, often 

the emphasis is very specifically on children, and adults are not included in State laws or Federal research efforts that emphasize 

these needs. All of the incidence statistics you heard earlier focused 

on 8-year-olds. We don’t look at the population beyond that. I also 

think we can’t underestimate the role of poverty in this. To be a 

disabled person is to choose essentially between accessing no supports or going on the SSI program, which places extremely Draconian limits on the income you can earn and what you can save. 

People on SSI can’t save more than $2,000 in assets. Until we address the systemic poverty that forces people with disabilities, including autistic people and our families, to be held behind economically, we are not going to be able to address the racial, income, and 

gender disparities in the autism world. 

109 

Mr. DAVIS. I thank you very much, and let me thank again all 

of our witnesses and all of those who have come, and please note 

that there are some individuals in public office who share much of 

the hope and much of the concern and much of the anxiety that 

you have expressed, and I thank you, Mr. Chairman, and yield 

back the balance of my time. 

Mr. MEEHAN. Thank you, Mr. Davis, and the chair recognizes the 

skilled capacity with which you were able to get the great Sam 

Cooke into the record. 

The chair now recognizes the gentleman from New Jersey, Mr. 

Smith. 

Mr. SMITH. Thank you very much, Mr. Chairman. 

I want to thank our panelists for their wonderful insights and incisive testimony. You know, one of the issues that Mr. Badesch 

raises and admonishes the committee to look at the increased Federal response to the needs of adults living with autism, and I think 

that is echoed by other panelists and by all of us. We have not done 

even a scintilla of what we need to be doing to address that important issue. 

I would like to focus on older parents, the need for support. I 

think they have few parallels. I have known many autistic families, 

and there is a burden that they carry that is so grossly underappreciated, and so many of them do it with such grace and with 

such dignity, great courage, and I think we need to recognize that. 

But what I am finding, and I know we all find this, that many of 

those parents who have older children who are autistic, and they 

are no longer children, they are adults, are facing a fright that they 

may soon pass on, what happens to their child, and even physically 

the inability to deal with a, particularly a young man who has got 

strength and they increasingly do not. 

I hosted Chuck Colson’s daughter, who wrote a wonderful book 

called ‘‘Dancing With Max,’’ who goes through her whole life and 

what it has been like, and that is one of the concerns she expressed 

with us. So perhaps, Mr. Wright or Mr. Badesch, if you could speak 

to it, others as well, this idea of older parents and aging out. 

And, secondly, Mr. Wright, if you could, speak to the—you laid 

out five very specific points, pillars for a national strategy. We are 

in the second decade, obviously, and pardon me, you know, if you 

don’t like the language, but my wife has a severe immunity disease 

called myasthenia gravis, and a very severe case of it, when we 

talk about defeating and combatting and curing, we mean it. She 

deals with it, and she will say it herself. And I do certainly understand where you are coming from, but we do need—I think combatting is a way of rousing people to say more resources to the fight. 

But, Mr. Wright, if you could speak to the five points, and then 

talk about the older parents and the older children. 

Mr. WRIGHT. There are two. Just right on the table right now, 

there are two service issues that are in front of Congress, and one 

of them is the ABLE Act, which is not confined to autistic children, 

but the disabled, and it is as to savings, and that has 240 cosponsors in the House and can’t get to the floor, but you only need 218 

votes. So I would urge you to try to get that to the floor and get 

that passed with 240 cosponsors. That is something that can help 

110 

families, especially working on aging children when the parents are 

able to put some money into that account. 

The second one is there is sitting out here now that there is autism insurance for home or office or wherever in 32 States covering 

75 percent of the population of the country that has to be brought 

back here to Congress so the ERISA companies, who are exempt 

from that, which are the largest companies in the country and occupy roughly half the working population, we now have half the 

working population in the smaller companies protected but not the 

larger ones. That has to be done by Congress. That has to get on 

the table. In past years, that was not a difficult proposition. It is 

an equity issue. You have a small grocery store that is local, and 

they have coverage, and the chain store right next door doesn’t provide the coverage. So there is two issues here that relate again to 

families and to give them service opportunities and hopefully reduce their debt burden and especially ABLE, which is a planning 

issue, especially as people age out. 

Housing is an enormous issue. We are going about it on a Stateby-State basis. I don’t know how to bring that to the Federal Government at this point in time, but it is going to have to get coordinated. It is very difficult. 

Mr. BADESCH. I would mention one of the things with aging parents, and particularly we now have a large group of individuals 

80s, 90s, who are the primary caretaker for an adult child, 60 or 

70. The portability of Medicaid is a major issue, because sometimes 

when that person needs a caretaker, if that is the condition, the 

caretaker lives in another State, the individual moves to the State 

and has to get put on a waiting list, it could be 5, 6 years, which 

makes absolutely no sense to us. 

The other issue is I think we have to do a better job of working 

with those parents and providing more options. The lack of housing 

for adults and particularly in community settings is dismal, and 

until we start recognizing, and again I think Mr. Ne’eman said this 

is a civil rights issue, when housing authorities don’t—when they 

define their services to disabilities as having handicap ramps, they 

are falling a little short. So when we put more services and make 

those that are responsible for certain things in the communities, 

make those services available for people with autism, it is going to 

make it easier for an adult with a child. 

Mr. BLAXILL. I want to make a point about aging out and services. I think if we think about when the inflection point and the 

increased rate of autism was around 1990 or thereabouts, that is 

about 22 years ago, and so what we are looking at, you know, just 

say that the leading edge of the epidemic is 22 years old, those kids 

are just now leaving the special education system. They are well 

cared for in their families by and large, they are cared for in the 

special education system, but as they age out, we are facing a tsunami of unmet needs for services, desperate families, aging parents, and, you know, the nightmare of every parent late at night 

at the bar when you are talking about these things at get-togethers 

is, what happens when my child—when I die, what is going to happen to my child when I die because the vast majority of these children can’t advocate for themselves when they become adults. They 

are going to be disabled. They are going to be dependent. They can 

111 

be abused. They can be taken advantage of and not cared for, and 

with often tragic outcomes, and we haven’t begun to see the wave 

of difficulties that we are going to face. If we are going to have rational policy, we need to face up to that, and it is going to be a 

massive problem. 

Mr. MEEHAN. Thank you. 

Thank you, Mr. Smith. Did you have—— 

Mr. SMITH. If I could—— 

Mr. MEEHAN. The chair will indulge you with that. 

Mr. SMITH. Just very briefly. You mentioned the Brick study, and 

I invited CDC and the ATSDR to Brick Township. ATSDR ruled 

out that there was environmental pathway. You mentioned that 

there is a black balling. Could you elaborate on that, if not now, 

certainly for the record of environmental researchers by NIH. 

Mr. BLAXILL. I could certainly provide for the record. We have all 

sorts of private conversations with scientists. SafeMinds funds 

science. We wish we had the resources of Autism Speaks. We wish 

Autism Speaks—and I know Bob is an advocate of environmental 

research, but we would love to see more from Autism Speaks. We 

would love to see more from NIH. We do work, a modest amount, 

so we are in contact with scientists. And the private conversations 

you have with scientists is that there are third rails. There are politically incorrect issues. There is—there are career consequences 

for doing a certain kind of study, and there have been ritual punishments of certain scientists out there, some very public, some 

more private, and there are innumerable, there are many examples 

of those. That is—and when the scientists say, oh, we should let 

the scientists take care of that, no. It is not a self-regulating process because, in fact, the leaders of NIH enforce the orthodoxy of the 

scientific establishment, and if you take on third rail questions, 

those are suppressed. We have many examples of those. I could 

provide some more. 

Mr. MEEHAN. Thank you, Mr. Smith. 

The chair now recognizes the gentleman from Pennsylvania, Mr. 

Kelly. 

Mr. KELLY. Thank the chair. 

Mr. Davis made a good point when he talked about the Sam 

Cooke song about change is gonna come, although in most of our 

lives, there is an old adage that change usually occurs at a time 

of tragedy or crisis. And I think we are far past both of those right 

now. 

I want to redirect, though, a little bit. Mr. McGarry is here from 

Mercyhurst. Mercyhurst recognized this a long time ago. I am 

going to say mid 1980s, right? But then all of a sudden, in 2009, 

you came out with the AIM program, which is the Asperger’s Initiative at Mercyhurst. Would you share a little bit with us what 

you have been able to do. I know you have spoken—I am from 

Pennsylvania. You have also presented internationally what 

Mercyhurst is doing, some of the innovation you have brought in. 

Again, if you would, tell us how you share some of that information, how you are able to disseminate to other people because I 

think there is—once we become aware, we can usually fix things. 

The more awareness, the better it is, and we had a chance to visit 

a little bit today. I admire what you have done not only in your 

112 

academic life but in your personal life, I know you are a person of 

passion. If you could share a little bit with the people here today 

with what Mercyhurst is doing in the AIM program. 

Mr. MCGARRY. Sure. Two parts of the question, what are we 

doing to disseminate information. Mercyhurst participated in May 

in Pennsylvania; we had the opportunity to have the first inaugural Conference on Autism in the Higher Education Setting. And 

Mercyhurst and five or six other institutions presented there on 

some of what we are trying to do, and 32 different colleges and universities were represented in the audience of that conference to 

learn what they could do to start implementing some of the programming and things that we are offering. 

What we are offering at Mercyhurst is not rocket science. It is 

not a brand new treatment option. Some folks have talked about 

applied behavioral analysis, and we have collaborated with our program at Mercyhurst in ABA, but we are doing a lot of tracking in 

looking at the students and saying we have identified four main domains that we feel are very essential for our students in the academic setting as well as vocational: And they are academic social 

progress; independence; social; and emotional. So we tried to track 

those four things specifically because what we are finding is if our 

students are lacking or having difficulty on two of those domains, 

the probability that they are going to be successful in the higher 

education setting and/or a vocational setting drastically decreases. 

So we are going to continue to kind of work on that. 

Another thing that we are doing is a peer mentoring program, 

and what we found is many of the students in our program have 

been in mentoring partnerships, but they have never been the mentor, so we have just recently implemented our peer mentoring program where our students do meet with peer mentors at the university, but they also are going to be going down to social service 

agencies within Erie that have other folks that have severe disabilities and are going in as a mentor to them to say, I have accomplished something, I am a college student, people said I would 

never be here, and I am, and I want to help you and mentor you 

in what obstacles you need to face and get you through those obstacles as well. So that is some of the things we are doing. 

Mr. KELLY. As you and I talked today, we talked about employment opportunities, and the idea that these are folks that can live 

a very productive life; they can be a big part of what it is we do 

as a country, and I think it is the awareness. And I really appreciate your coming here today and what you have done with your 

life. The more we become aware about it, the more we understand 

how to handle it, the more we can adapt and bring these people 

in with us and understand there is a light at the end of the tunnel. 

We talked to Bill Gates, you want to talk about somebody who can 

be successful that has an autism disorder, but if you can, the 24 

percent are actually employed, right? There is a lot of adults that 

can’t get work. Just a little bit of that impact of what we could do 

to change that because I think there is a great opportunity that 

these people have a meaningful life, something that they feel good 

about, that they get up in the morning, and they can’t wait to contribute. 

113 

Mr. MCGARRY. Absolutely. Yeah, I think our vocational and our 

internship. Unfortunately, we have a stigma, and we are working 

with students that have autism and are Asperger, some of the vocational opportunities that are presented to Mercyhurst are far beyond the skills and the caliber of what our students can achieve, 

and so we need to have a strong awareness that, as some other 

panelists have said, autism is not necessarily an intellectual issue. 

If we can train and work on some of the social skills and the executive functioning, they can far exceed expectations and do some jobs 

much better than the rest of us can. And we just need to train society to understand that and give these students the specific skills 

to accomplish that. 

Mr. KELLY. Amen. If I could, Mr. Chairman. 

Chairman ISSA. [presiding] Without objection. 

Mr. KELLY. Would you share the conversation we had, and we 

talked about the one student and the professor was outlining or 

giving them an assignment, I thought that was absolutely phenomenal because what we see sometimes we don’t get it, you can’t 

tell a book by its cover. Share that because I thought that was really uplifting. 

Mr. MCGARRY. I had a—in the AIM program, we send a letter 

to every single faculty member stating that this student in your 

class is being supported by the Asperger Initiative, and if you or 

that student need resources, we are available. The faculty member 

contacted me on the second or third day of class and said, Brad, 

this student, I explained an assignment that was worth 60 percent 

of the grade in my course. And the student looked at me, and I 

really am not sure if he understood a word of what I was saying, 

and so can you work with him and help me work with him? That 

assignment was supposed to take 10 weeks. That student the following Tuesday turned that assignment in, and that professor said 

it was the most incredible piece of student graphic art that he had 

seen in 25 years. So we know that there is a misrepresentation 

from what we think is being heard and what is being processed 

and the caliber of students that we are working with. 

Mr. KELLY. Thank you for being here and thank you for dedicating your life to making sure these people do have a life. 

Thanks so much, and I yield back, Mr. Chairman. 

Chairman ISSA. Thank you, Mr. Kelly. 

As promised, this was a long and well worthwhile hearing. We 

learned a great many things that both we and the public were not 

aware of. We didn’t have an opportunity to hear from witnesses 

who had genetic links that they could see in their own families. We 

certainly did not hear from the witnesses who are women who recognize in their own lives that the under- evaluation because of perhaps differences in behavior between men and women lead there 

to be a discrepancy in recognition and a discrepancy in perceived 

challenge to women versus men. 

We certainly learned that the State of Utah has found a way to 

identify differently or better or more than other States. We certainly learned that, in fact, a passive discovery system is not going 

to get us or any other country in the world to an accurate number 

or to seek out people we could help and help early. This and more 

will be things that this committee will continue working on as part 

114 

of the legacy of my predecessor, Mr. Dan Burton, for many years. 

There is nothing we heard today that is off limits for us to continue 

to explore. This committee stands ready to take your additional 

comments and questions as promised. There is a C–SPAN audience. We may perhaps get additional letters. We will try to include 

those in the record whenever possible. 

Lastly, I don’t believe we covered every interest group, either, 

with our witnesses who are here today. So because there are so 

many organizations involved that want to be heard, I would only 

ask all of you, when you work with other organizations or groups 

of individuals, that you explain to them that this committee will 

have a permanent staffing, at least as long as I am chair, to try 

to continue to consolidate information and to get government to do 

its job more effectively, more efficiently and, if at all possible, find 

additional funds to continue dealing with all aspects of this disease. 

And with that, this committee stands adjourned. 

[Whereupon, at 5:45 p.m., the committee was adjourned.] 

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OPENING STATEMENT FOR REP. DAN Bl!RTON 

Committee on Oversight and Govemment Reform Full Committee Hearing 

"1 in 88 Children: A Look into the Federal Response to Rising Rates of Autism" 

November 29,2012 

2:00pmi 2154 RHOB 

I want to thank Chainnan Issa for scheduling this 

important hearing on autism during this lame duck 

session. As many of you know, because of my 

grandson's diagnosis with autism in the late-90s, I 

took it upon myself to learn about autism. During 

my tenure as Chainnan of the House Committee on 

Government Refonn (1997-2002), and the 

subcommittee on Human Rights & Wellness (2003-

2004), I held no fewer than 20 hearings examining 

the state of federal scientific research into the cause 

of and treatment for autism. 

I am proud of the work we did to raise awareness of 

autism and draw more attention to the need for 

research; and I am finnly convinced that the work 
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we did back then laid the groundwork for the 

historic Combating Autism Act and the $1 Billion in 

Federal research into autism that is happening today. 

However, alongside the momentum gained from the 

Combating Autism Act, the realities bear out that we 

need to do more. On March 30,2012, the Centers 

for Disease·Control and Prevention (CDC) released 

their latest figures on the number of autistic kids in 

America. The numbers are sobering. Thirty years 

ago it was estimated that autism affected only lout 

of every 10,000 individuals. The latest CDC figures 

put the number at 1 in 88 American children (1 in 54 

boys); a 5500/0 jump in cases since 2000. 

What does this mean? This means that the epidemic 

of autism is an immediate crisis to our education 

2 
117 


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system, our health care systems, our long-term 

housing and care system for the disabled, and lnost 

especially, to an ever increasing number of families 

across the country. Autism is a condition that can be 

treated to a degree but it has no known cure; which 

means that this is a crisis that is simply not going to 

"go away." 

I believe that our Nation's educational, labor, 

housing, law enforcement and medical communities 

are currently ill-equipped and undertrained to handle 

this lost generation of autistic individuals and that it 

is going to take a national commitment driven from 

the highest levels to marshal the necessary resources 

and energy to catch up. Autism has no cure and it is 

not a life-threatening disease. 

3 
118 


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That means that the autistic children of today will be 

the autistic adults and autistic seniors of tomorrow. 

Our Nation is ill prepared to deal with the complex 

challenges posed by a generation of autistic 

individuals. There have been far too many stories in 

the media of police, firefighters, and teachers illprepared to cope with an autistic individual and 

tragedy has resulted. We need to change that. 

We need prominent and influential leaders to step 

forward and spark a national debate on autism. We 

need to know what's working, what isn't working 

and what research is most promising. What are we 

doing to fight this disease and what more can be 

done? These are key questions I'm hoping our 

witnesses can address today. 

4 
119 


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F or these reasons, earlier this year I introduced the 

"White House Conference on Autism Act" (H.R. 

3489), to require the President of the United States 

to convene a White House Conference on autism 

charged with developing policy recommendations on 

ways to address the autism epidemic and its impact 

on Americans. 

When I started my research into autism what I found 

was deeply disturbing, and for the last several years I 

have fought hard to raise awareness of this disease, 

and increase research into the causes of autism, as 

well as new treatments for those suffering with 

autism. 

Unfortunately, a great deal of misinformation has 

been thrown around in public and private about my 

5 
120 


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focus on mercury in medicines as a possible factor in 

the autism epidemic. 

I do not want to take away from the focus of today's 

hearing - A Look into the Federal Response to 

Rising Rates of Autism - but I would be remiss if I 

didn't mention my past associations with the theory 

of mercury-linked autism. I'm not a scientist and 

never have claimed to be, but while I was Chairman 

of this Committee I heard from many credible 

scientists and experts who are convinced that 

mercury is a contributing factor; and the theory is no 

less worthy of exploration than the theories being 

propounded today that the pregnancy weight of the 

mother or the age of the father at conception 

influences whether a child becomes autistic. 

6 
121 


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When you have no idea what is causing a disease, 

policYlnakers and scientists should never be afraid to 

investigate any plausible theory. In fact, researching 

possible environmental factors is a central 

component of today's research on autism. 

Regrettably, lost in the controversy over mercury is 

the issue of the Vaccine Injury Compensation 

Program, which I hope some of our witnesses can 

speak to. In the 1980s, Congress created the 

Vaccine Injury Compensation Program to shield 

medical professionals and vaccine manufacturers 

from liability if an individual suffered an injury from 

a vaccine. The compensation fund, which currently 

contains over $3 Billion, was created to protect the 

vaccine supply and to insure that all who were 

injured by a vaccine received compensation in a no7 
122 


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fault, compassionate, easy to use manner. Congress 

intended for families to be compensated quickly and 

fairly; and when the evidence was close as to 

whether or not the medical condition in question was 

vaccine related or not the court should always err in 

favor of the injured. 

Our investigations found that over the years the 

system had broken; and what was supposed to be 

quick and fair became slow and contentious. There 

has been no Congressional oversight of the Vaccine 

Injury Compensation Program in the last decade, and 

the system has not improved; if anything it has 

gotten worse. 

It is time for Congress to revisit this issue and 

consider substantially reforming this program. For 

8 
123 


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the public to trust vaccine policies, it is vitally 

impOliant to have a National Vaccine Injury 

Compensation Program that is efficient, effective, 

and fair to those who may have suffered injury from 

vaCCInes. 

Again, I'd like to thank Chairman Issa and his staff 

for scheduling today's hearing. And although I am 

retiring from Congress I am not retiring from the 

fight against autism, because I firmly believe as a 

nation we have a collective responsibility to do 

everything we can to not only stop the further spread 

of this disease but to help the millions of children, 

adults and families afflicted with this disease. 

9 
124 


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DARRElLEISSA,CAlIFORNIA 

CHAIRMAN 

LAWRENCEJ BRADY 

STAFF DIRECTOR 

ONE HUNDRED TWELFTH CONGRESS 

Qtongress of tbe Winiteb $tates 

~ouS'e of l\cpreS'cntatibeS' 

COMMITfEE ON OVERSIGHT AND GOVERNMENT REFORM 

2157 RAYBURN HOUSE OFFICE BUILDING 

WASHINGTON, DC 20515-6143 

Opening Statement 

Rep. Elijah E. Cummings, Ranking Member 

Hearing on "1 in 88 Children: A Look into the Federal Response 

to Rising Rates of Autism" 

November 29, 2012 

HlJAH E CUMMINGS, MARYLAND 

RANKING MINORITY MEMBER 

Mr. Chairman, thank you for holding today's important hearing, Thank you also for 

conducting it in a bipartisan manner and working with us on witnesses and written testimony for 

the hearing record. 

We have learned much about Autism Spectrum Disorders over the past decade. 

Taxpayer-sponsored research has identified risk factors and evaluated therapies to assist with 

some symptoms. Physicians and parents now have a better understanding of the developmental 

signs and symptoms, allowing for earlier detection. And educators have experimented with new 

methods and approaches for assisting children with autism. 

Congress has also acted to help individuals with autism and their families in significant 

ways. In 2010, we passed the Affordable Care Act, which contains significant new protections. 

Insurers may no longer discriminate against individuals based on preexisting conditions. 

Insurers may no longer impose lifetime caps on health care coverage, New plans must include 

screening for autism without additional costs to the parents. And young people diagnosed with 

Autism Spectrum Disorders may remain on their parents' health insurance plans until they are 26 

years old. These are real and significant protections that will improve the lives of millions of 

American families. 

Even with this progress, there is still more to learn and do. While autism affects all 

racial, socioeconomic, and ethnic groups, some studies have shown that African American, 

Hispanic, and Asian children are less likely to receive an early diagnosis. These delayed 

diagnoses cause minority children to be further behind in the development of language and motor 

skills. We must be vigilant in emphasizing early detection and intervention for all our children, 

as an early diagnosis can make a critical difference in the life-long development of a child. 

We must also continue to invest federal research dollars in new and evolving therapies to 

improve the lives of those with Autism Spectrum Disorders. In my district, we house the 

Kennedy Krieger Institute, an internationally recognized' institution dedicated to improving the 

lives of individuals with developmental disorders, These institutions improve the quality of life, 
125 


Insert offset folio 57 here 80405.057

education, and continued development of those affected by Autism Spectrum Disorders, and we 

must continue to support them. 

Today's hearing is an opportunity to examine what has been done about Autism 

Spectrum Disorders to date, and what more needs to be done in the future. There are many 

experts, individuals, and groups who can help us in this effort. One of these individuals is Ms. 

Simone Greggs, founder of the nonprofit autism support group, All the Love. 

Mr. Chairman, at this time, I ask unanimous consent that Ms. Greggs' full written 

statement be entered into the hearing record. 

Mr. Chairman, at this time, I also ask unanimous consent that the Committee allow 

Representative Jim Matheson to participate at today's hearing. 

Mr. Chairman, let me conclude by acknowledging the dedication and commitment of our 

colleague, Mr. Burton, who has made this one of his core issues during his tenure in Congress. 

Regardless of any political differences we may have, I want to commend his spirit, which has 

been dedicated to the best interests of children across this country. 

Thank you. 

2 
126 


Insert offset folio 58 here 80405.058

Statement for the Record 

Rep. Chris Murphy 

House Oversight and Government Reform Committee Hearing 

I in 88 Children: A Look Into the Federal Response to Rising Rates of Autism 

Thank you Chairman Issa and Ranking Member Cummings for holding this important hearing. 

As the father of two young boys, I'm very concerned about this issue and hope that this hearing 

represents just another step in our journey to find the root cause of autism spectrum disorder. 

Autism affects a growing number of American families throughout the U.S. The number of those 

diagnosed with autism has doubled since 2005 and autism is one orthe leading mental disorders 

in children. Its effects are being felt now more than ever. Just this year, the Centers for Disease 

Control and Prevention released a study that found that 1 in 88 children in the United States has 

autism. Furthermore, the study showed that I in 54 boys have autism, a rate higher than the 

national average. The rate for girls is 1 in 252 girls. By comparison, this is more children than 

are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or 

Down syndrome - combined. 

Autism knows no political or geographical boundaries and we all must come together to address 

this ever growing public health crisis. Last year, we did just that when we were able to pass the 

Combating Autism Reauthorization Act unanimously in the House and Senate. More recently, the 

Senate passed a long overdue measure to ensure that all military families affected by the disorder 

are able to access effective treatment options for their children. It is my hope that the final 

National Defense Authorization Act will include this provision and the 23,000 TRICARE 

benetlciaries diagnosed with autism will be able to receive the treatment they need. 

The struggles felt by the diagnosed individuals and their families extend into the financial 

stability of the home. It has become increasingly expensive to live with autism today. Autism 

Speaks estimates that the lifetime cost for a person with intellectual challenges has risen to $2.3 

million. When including all medical and non-medical costs, it is estimated that autism spectrum 

disorder costs the United States $137 billion annually. The sad reality is that many families 

forego services because they are simply unaffordable. 

J am inspired by the dedication and persistence of parents and allies of children with autism. 

Their activism has led to the creation of a number of important groups, such as Autism Speaks, 

and has led to a number of bills being passed here in Washington and in state capitals across the 

nation. It is because of their passion and advocacy on behalf of their children, family members 

and loved ones that we are making progress today. My state of Connecticut is fortunate to have 

one of these leaders in Shannon Knall from Simsbury, Connecticut. J, like many other 

policymakers in Connecticut, have called on Shannon for her knowledge, expertise and guidance 

as we work to address this incredible challenge. 

Again, thank you Chairman Issa and Ranking Member Cummings for holding this hearing and I 

look forward to working with both of you in the future as we move towards a comprehensive 

strategy to deal with autism. 
127 


Insert offset folio 59 here 80405.059
128 


Insert offset folio 60 here 80405.060
129 


Insert offset folio 61 here 80405.061

21Page 

Federal Charges: October 25, 2012, the Office of the Inspector General added Dr. Poul 

Thorsen to their HOIG Most Wanted Fugitives" Listl Of the man:);' concel1lS about Dr. Thorsen; 

the most troubling aspect is the April 13, 2011 Federal Indictment.· The United States Attol1ley's 

Office in the Northel1l District of Georgia issued a public statement3 announcing that a federal 

grand jtUy had indicted Poul Thorsen, (MD, PhD) 49 years old of Denmark on 13 counts of wire 

fraud and 9 counts of money Immdering. United States Attol1ley Sally Quillian Yates stated that 

Thorsen "is alleged to have orchestrated a scheme to steal over $1 million in CDC grant money 

earmarked for autism research. " 

Nature ouline printed the following announcement on April 20, 2011 4

: 

Research fraud: Prosecutors ill the United States are seeking to extl'Cldite a Da1lish scientist 

reseCII'chil1g the relationship between CIIltiSIII and vaccilles, who, they allege, stole more than 

US$l million in research funding. Pout nlOrsen was a visiting scielltist at the Centers for 

Disease Control and Prevemion (CDC) ill Atlanta in the 1990s. US proseclItors say that after 

retuming to Denmark in 2002, Thorsen submitted fttlse invoices from the CDC fo Aarhus 

University, which unknowi1lg~v transferred }imds to his personal account. He was last week 

c1/C1l'ged with 13 comUs of wire }i'alld and 9 of money laundering. 

The Indictment: TIle Criminal Indictment No.1: 11-C R -194 United States of America v. Poul 

TIlorsen5 states that beginning around February 2004 and continuing through February 2010, 

that "aided and abetted by others known and lmknown, did knowingly devise mId intend to 

devise a scheme and artifice to defraud and to obtain money and property by means of 

matelially false and fraudulent pretenses, representations, and promises and omissions of 

matelial facts, well knowing and having reason to know that said pretenses. representations and 

promises were and would be false and fi'audulent..." The indictment provides that Thorsen 

submitted false invoices and created private bank aCColUlts at the CDC Federal Credit Union to 

which he had monies wired to pay invoices (from a CDC laboratolY using false signatures) and 

then used the monies (close to $1 million) to pmchase a Harley Davidson motorcycle, two 

automobiles and a home listed as a 4 bedroom, 5 bath 2688 sq ft home at 2657 Briar Lake Road. 

Atlanta, Georgia 30345. 

The Justice Department provides that it will seek to recover all of the property that Poul Thorsen 

plU'chased, howeveI; Dekalb COlUlty tax records6 show that the aforementioned home is no 

longer owned by Thorsen. It is now o\vued by another CDC associated individual (Janet Hemy) J 

The Briar Lake Road home listed in the indictment in April 2011 was foreclosed on by the lender 

in March 2011 after a default on the $405,000 owed. It appears that a bank sale was conducted in 

1 https://oig.hhs.govlfraudlfugitivesiindex.asp 

2 http;/Iv."\\'Yt'rescuepost.conv'files/thorsenMindictmentpdf 

3 http://,,,'ww.justice.goy/usao/ganipressl201I/04-13-11.httn! 

420 April201lINatw'e472. 264-265 (2011) I doi:l0.1038i472264a 

http://w\vw.nahu-e.convnewsI2011l110420/fullJ472264a.html?s=news rss 

l http://www.rescuewst.comlfileslthorseu-indictme11l.pdf 

• http://web.co.dekalb.S •. uslTa.. CommissionetITCDispl!\y.asp?ParceIStatus=y&"iu=2546557 

7 A search on 1111112 of the HHS Employee directory fInds Janet Henry listed as a contractor in the CDC's OffIce 

of NOll communicable Diseases, Injury and Environmental Health. National Cellier fur Chronic Disease Pl-evention 

and Health Promotion (janet.henn@£dc.hhs.gov) 
130 


Insert offset folio 62 here 80405.062

31 P age 

August 2011, thus removing the property from Thorsen's ownership (and the Justice 

Depaltment's reach). Available data show that there was an attempt to sell the listed home for 

almost $500,000, the price was dropped repeatedly alld then withdrawn from market. 8 

If convicted on all counts: Poul Thorsen could face up to 260 years in pIlson and $22.5 million 

in fines 9 .

10 

Poul Thorsen: Thorsen stands as the pl1ncipal investigator (lead-researcher) on all CDC-funded 

Danish research used to COtmter argmnents fi-om families c1ainllng their children suffered 

vaccine injuries including, runong other conditions, the onset of symptoms of autism spectl1lm 

disorder. 

Dr. Thorsen acted as a vlSltmg scientist at the (CDC) Division of Birth Defects and 

Developmental Disabilities. He successfully promoted the idea of aWal'ding research flmds to 

Aarhus University in Demnark to study the relationship between autism and vaccines. According 

to the indictment. he "provided input and guidance for the research to be conducted." 

It would appeal' that he built a strong relationship with CDC staff, and begilming in 2001 began a 

relationship that has tmdel'written his entire Cal·eel'. Beginning in 200 1, Dr. Thorsen lists himself 

as affiliated with both a) the Developmental Disabilities Branch, Division of BUih Defects, Child 

Development, and Disability and Health, National Center for Enviromnental Health, Centers tor 

Disease Control and Prevention, Atlanta and b) Danish Epidemiology Sciences Centre, Aarhus 

University. He is further listed as the corresponding author of the paper. 11 A year later he 

removed the Aarhus University affiliation from his next publication and only listed his CDC 

affiliation with colleague Dr. Diana Schendel. 12 

At the time his article was published in 2003, "Thimerosal and the OccmTence of Autism: 

Negative Ecological Evidence From Danish Population-Based Data", Thorsen claims all 

affiliation with the Danish Epidemiology Science Centre, Department of Epidemiology and 

Social Medicine, University of Aarhus, Delmlark. 

• Conversation with realtor with access to Georgia MLS systems confinlled that Thorsen had o",ted the property. 

that it had been listed for sale in the high $400'0005 and then dropped at least 3 tin!.s in price into the $300.0005 

before being removed from the market by the bank which had foreclosed 011 TI'Orsetl in March 20 II. 

9 http://v'''''''w.nanlI'ahlews.COllV032216 TIl0rsen fi:aud.html 

10 http://www.justice.goyiusao/ganiPIessi20IllQ4-13-II.html .. TI.e indictment charges THORSEN with 13 cotmts of 

wire ti"aud and 9 COlUlls of money latmdering. TI,e "ire fraud COlUlts each cany a maximum of 20 years ill prison. 

and the money laundering COlUlIs "ach carry a maximlllll of 10 years ill prison. with a fine of up to $250.000 for each 

COlUlt." 

11 Identification of biologicaL biochemical marker(,) for pretetlll delivety. Thorsen p. Schendel DE. Deshpmlde AD. 

Vogel 1. Dudley DJ. Olsen J.Paeeliatr Perinat Epidemio!. 2001 Jul;l5 SuppI2:90-I03.Pr,,1ID: 11520403 

t2 Public health issues related to infection in me!!!!."cy and cerebral palsy. Schendel DE. Schuchat /';. Thorsen P. Mellt ReWd 

Dev Disabil Res Rev. 2002;8(1):39-45 Source Division of Birth Defi:cts and Developmental Disabilities, National Center on 

Birth Defects and Developmental Disabilities, Cent"", for Disease Control and Prevention, Atlanta. Georgia 30341. USA 

dcs6@c<k.gov 
131 


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41 g 

CDC's Dr. Schendel is co-author on 36 papers with Dr. TIlOrsen and has continued to collaborate 

with Dr. Thorsen even after the indictment. PubMed provides that she is co-author on two 

articles in the second half of2011 and most recently an atticle published in October 2012. 13 

Effect on long-term US poHcy making: Dr. Thorsen was actively engaged with the American 

Psychiatric Association (APA) in the development of the highly controversial fifth edition of the 

Diagnostic and Statistical Manual (DSM-5). The work group is chaired by Dr. Susan Sweedo of 

the National Institutes of Health. According to the btief bio on the AP A website 14 Dr. Thorsen 

listed his position in Januaty 2010 as AdjlU1Ct Associate Professor. Department of Epidemiology 

and Biostatistics. School of Public Health. Drexel University. Philadelphia. PA. USA. The APA 

website notes that Dr. Thorsen requested a 'leave of absence' from the work group. 15 

Thorsen claims on the bio he provided the AP A that he statted his first project in 1987 while still 

a medical doctoral student. and that he "managed a considerable mmlber of studies on autism. 

national as well as international" further claiming his research career began in 1992. From a 

search of the internet and Dr. TIlOrsen's indications, he has authored or co-authored more than 90 

scientific articles and book chapters. 

1996 Began work on the Danish National Birth Cohol1 

1997-2000 Visiting scientist. CDC 

2000-2008 Associate Professor. Depal1ment of Epidemiology. School of Public Health. 

UniversitY of Aarhus. Dellntark. 

2008-2009 Research Professor. Deparnllem ofEpidelniology. Rollins School of Public 

Health. EDlOIY University. Atlanta. Georgia. USA. 

1 999-present Associate. Dep311ment of Epidelniology. Jolms Hopkins University. Baltinlore. 

MJlfYland. USA. 

1998-2005 March of Dimes, PERI grantee 

1999-2008 CDC appointed principal investigator on the "Epidemiologic smdies of 

reproductive 3l1d developmental outcome - Deml131'k." 

Dtn'ing the period 2000-2008. the bio clainls that Dr. Thorsen established the research group 

known as "NOIth Atlantic Neuro-epidemiology Alliances" (NANEA) otiginally initiated to do 

research on Cerebral Palsy in 1999-2000. He provides that in Januaty 2010. more than 30 

researchers are affiliated. NANEA's main research areas were: 

a) Autism 

b) Cerebral palsy 

c) NelU'opsychologicaJ development 

d) Preterm bilth 

e) Down syndrome, and 

1) Hearing loss 

13 Cytokines and Posli1emon-hagic Ventricular Dilation in Premature Infants. Ambalavanan N. Carlo WA. 

McDonald SA. Das A. Schendel DE. Thorsen P. Hougaard DM. Skogstrand K. Higgins RD: for the Cytokine and 

Generic Database Subcommittees of tbe ElUlice Kennedy Shriver National Institute of Child Health Htunan 

Development Neonatal Research Network.Am J PerinatoJ. 2012 0<:1:29(9):731-740. Epub 2012 Jul 6. 

14 hrtp:/i\vww.d'5llp orwMeetU@ocwnents/NetU'odeVlThorsen~"'o20~'?920Di~clostu'e% 70-0/0201-22-1 O.pdf 

15 http://wy.:w.dsm5.org!MeeIUslPagesIBioPouIThorsen.aspx 
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On the APA DSM-5 working group website it states Thorsen pruticipated in the Aufism alld 

Other Pervasive Developlllental Disorders Conference in Febmary 2008. 16 The DSM-5 has 

come under criticisms for proposing changes to the criteria for diagnosing autism spectnull 

disorders that would in some opinions prevent up to 75% of higher nmction or Asperger's 

individuals from qualifying for services. 

In contradiction to Thorsen's claims, the evidence shows he was not involved in autism research 

tmtil the 2002 aIticle on the MMR vaccine and autism. Prior to this, most of his publications 

focus on sexually transmitted diseases, infections during pregnancy, and neonatal reseru'Ch -

more of a shotgtm approach to vaccines and public health issues mther than a bull's-eye topical 

focus that most feel make one an expert in a field. 

Thorsen Broke Other Rules as Well: In January 2010, Aarhus University issued a fonual 

statement17 distancing itself from Poul TIlorsen, COufnllllng that the University discovered 

shOitages of fimds in the CDC grant accounts. TIlls was repOited to the Drurish Agency tor 

Science, Teclmology and Innovation (DASTI). DATSI conducted an intemal investigation and 

reterred the matter to the police, TIle letter states: 

"In March 2009, Dr, Thorsen resigned his faculty position at Aruhus Uillversity, In the 

meantime, it has come to the attention of Aarhus University that Dr Thorsen has continued to act 

in such a marmer as to create the impression that he still retains a counection to Aru'lms 

University after the termination of his employment by the lmiversity, Fmthermore, it has come to 

the attention of Aru'hus University that Dr. Poul TIlOrsen has held nIlI-time positions at both 

EmOlY University and Aarhus University simultaneously, Dr. Thorsen's double FtIll-time 

employment was lmauthorized by Aru'hus Uillversity, aIld he engaged in tIllS employment 

situation despite the express prohibition of Aru'llUs University." 

In additiou to the crinrinal acts IUlcovered, Aru'lms publicized that Thorsen violated the nIles of 

employment for the University. This demonstrates a pattem of unethical behavior by Thorsen, 

one indicating that nIles do not matter that he is above the law, above university rules, and 

likely above ethical standards of good science, 

Tax Evasion: Danish Joumalist Ulla Denielsen repOIted via a blog that the Danish govemment 

sought to prosecute POlIl Thorsen for tax evasion, In 2009 the prosecution chru'ged Poul Thorsen, 

with gross tax evasion conceming an amotml of fully 6, 4 lnillion DKK (US$ 1.1 3 million). For 

this, the Prosecution claims Poul lllOrsen must be ptmished with prison. As stated in the 

indictment, POIIl Thorsen during the years 2001-2005 evaded income from fees, salary or the like 

for 6,430,768 DKK. Thorsen's attomey sought to have the chru'ges be dislnissed. A heruing 

schedlIled for Mru'eh 29, 2012 disnrissed the charges on tec1nricaIities based on deficits in the 

indictment, not because Thorsen was exonerated from the charges. 18,19 

16 http://w?., •• v.dsm5_orgIresearcbJpagesJautiflTV'ndotherperyasivedeye1opmentaJdisocdgsconkrence%28febrwgy3-5 20080/029.amx 

17 http://wv.;vlrescuepost.com/filesithorsen-aarhU$.pdf 

18 ht1p:llnbjour.wordpress.com/2012/03/14/danish-high-profile-tax-case-postponed-again! 

19 ht1p:llnbjour. wordpress.coml20 12/04113/breaking-proseculor-wants-danish-highest-court-to-reconsiderdismissed-thorsen-tax-casel 
133 


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The CDC-Denmark Study Outcomes: The CDC provides on its website a complete list of the 

articles published as a result of the CDC collaboration in Denmark 20 Poul Thorsen is a co-author 

in 21 of the 24 papers. 

Autism Related Papers: Thorsen's entry into the autism research realm began in 2002 with the 

publication of the frrst Aarhus/CDC paper. In the decade since, he has co-authored 21 papers (2 

in a Danish journal, duplicates to two English language publications. so in essence 19 studies.) 

(Exhibit 1) These publications started after he rettmled to Aarhus University in 2002; beginning 

in 2005 he claimed he was affrliated with North Atlantic Nem'o-Epidemiology Alliances. 

Depmtment of Epidemiology and Social Medicine. University of Am"llUs. Am'hus, Demnark 

An mtic1e published online in April 2010 again with CDC employee Dr. Schendel lists Dr. 

lllOrsen without any affrliation, but living in Atlanta. A May 2010 paper fails to include 

Thorsen's affiliation. In a paper published in June 2011 (and published online a yem' before), Dr. 

Thorsen is listed as being employed at the Institute of Public Health at the Depmtment of 

Epidemiology, University of Aarhus, AaIhus, Demnark. One of his co-authors again is CDC 

employee DianaE. Schendel, Ph.D. 

From June 2011 to November 2012 (following the US federal indictment) 16 papers were 

published as peer-reviewed literattrre and posted on PUBl'vfED listing Potll Thorsen as a coauthor. The CDC continues to promote research he is affiliated with as recently as October 2012 

on the agency's website. 21 These more recent studies list him as employed at the Department of 

Obstetrics and Gynecology, Lillebaelt Hospital, Kolding, Delllnark 

An inquiry to Lillebaelt Hospital, Kolding De1llllalk on March 20, 2012 confrmled that Poul 

Thorsen is indeed employed there and provided Iris email address 

Poul.BakThorsen@slb.regionsyddalll13rk.dk. 

An intemet search for Poul Bak Thorsen fOlmd that Thorsen continues his involvement in 

research, but now referred to as "Poul Bak Thorsen" or "PB TIlorsen. n His research team 

provided a poster session at the Society of Americau Gastrointestinal and Endoscopic Surgeons 

(SAGES) in early Mm'ch in San Diego. It is unclear whether Dr. Thorsen came to the United 

States himself (since the Department of Justice has extraditiou orders for him with the Danish 

govemment to face ctiminal charges). Innnigration is supposed to have his passpoli flagged. 

Aarhus Receives Major Funding in 2012: It was widely alllounced in early March m 

De1llllark, that the Aarhus University will receive a grant for the project to be known as 'The 

Lundbeck FOlmdatiou's Initiative for Integrative Psychiatric Research' (iPSYCH). TIle grant of 

2<> http://y{ww.cdc.govincbdddideyeJopmentaldisabilities!documentsfArtjcles-CompJeted-Denmark.pdf 

21 http://friendsllippets.lletiphlicisciclipS/issnes/v4issue41.html 
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DKK 121m (approximately $21.5 million) from the Lundbeck FOlmdation is the largest grant 

ever awarded to Danish psychiatric research. It will look at five mental health conditions 

including autism's cOllllections between genetics and the enviromnent. 22 

The Llmdbeck FO\llldation23 is a commercial fOlmdation that holds 70% of the shares in the 

L\Illdbeck Group, a global pharmaceutical company working on brain disorders. L\Illdbeck 

Group has at least eight mental health drugs in phase II and ill development stages with two in 

registration process. A Lise Bech Jellesmark - Thorsen is listed as a PhD research student at a 

Llmdbeck FOlmdation activity at Aarhus. 24 It is not known at this time if there is a relationship 

between Lisa and Poul. 

NAl~A: The North Atlantic Neuro-Epidemiology Alliances, Department of Epidemiology and 

Social Medicine, University of Aarhus, Aarhus, DelUllark (referred to as NANEA) received $16 

million ill grant fimds from the CDC. A March 2010 article in a Danish newspaper 25 details how 

the project was 'gold plated' because of the American money, and due to its fimding it grew 

larger than the actual Department of Epidemiology at the university and thus moved to its own 

headquarters. The article states, "Ill the first vears of the employees live ill a world of gUt; and 

pampering. " We nm in a huge Mercedes' 'Is the watchword, and it's tme. Every tillle a sciellfist 

travels into 'he country to gather data, it is ill business class, savs Auja. Lise St(VS that the Dalles 

are visiting ill Atlallfa, where they are impressed when a limousine rotls lip ill frol1l of the hotel 

door to take them to meetings with the CDC. Delicious dinners, expensive brands of alcohol alld 

stt(V in luxury get-aways as Dellmark's castles are all the program when the traffic goes the other 

way and money the men from the USA visitillg Denmark." 

TIlis article implies there may have been other interests involved in NANEA (which may have 

created a financial conflict of interest on the CDC fimded grants) and states that several of the 

employees were paid sums in addition to their goveflllllent salmy, an action that is considered 

illegal in DeUlllark. A timeline of potential interest is also provided in the mticle: 

NAl'\'EA's Rise and Fall 

2000 NANEA created with COC grant of$7.8 million (POlU Thorsen to nm) 

2007 COC provides another $ 8.2 million. 

2008 POtU Thorsen moved to Atlanta, but remained as scientific and 

administrative head ofNANEA 

Winte-I" 2008-2009 AU discovers there are no ftmds for research done at NANEA. Poul Thorsen 

assures them money will come frOlll the u.s. and provides declarations of 

grants as dOClllllentatioll. 

Marcb 2009 POtU Thorsen resigns his position at Aarhus University. NANEA disbanded. 

but projects continue \illder new manal!emcnt. 

22 hru>://v,:ww,$lu.dk/enfabow/news/single/artikelirecord-breakins:-grant-new .. research-project-to .. inyestigate-thecauses-of-menlal-disorders! 

23 http://www.hUldbeckfotUldation.com! 

24 http://www.cirro.dk!profile?usemame-Iisethorsen 

25 www.infounation.dkl227065 (in Oanish) and 

%3F 

A (translated to English) 
135 


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Spl'ing2009 University of Aarhus discovers three letters acknowledging grants D:om the 

CDC were apparently falsified. just as the CDC does not acknowledge a 

letter on an outstanding amollllt ofNANEA first appropriation. In all. 

falsified signanu-es appear on documents totaling nearly two million dollars. 

May 2009 Science. Technology and Innovation COllllCil submit a police report. TIle 

notification is not directed against any named person. 

Fall 2009 University of Aarhus discovers that PouJ Thorsen has maintained a dual 

appointment as associate professor in Demnark and a professor at EmOlY 

University in Atlanta that the University of Aarhus did not approve. 

January 2010 University of Aarhus director Jorgcn Jorgensen denoooces Poul Thorsen in a 

message to NANEA-projecl pru1ncrs. The message also mentions the fraud 

case 

Febl1larv 2010 Savannah Morning News takes up the case and the other media follow. 

March 2010 0stjyllands Police investigators continue to raise a chruge against the key 

person. 

Other articles from the same news sources indicate that at least one other scientist is ooder 

investigation. 

Conclusions and Questions that Remain 

The Danish Vaccine Studies are tainted: Years before the criminal activities canle to light 

snldies from Thorsen had been called into question based on conflicts of interest. design flaws 

and quality issues. These same studies were used by the US govel1lment as the basis to refute any 

link between vaccine injmy and the onset of the symptoms of autism spectnull disorders. 

Two evaluations provide an analysis of ilie Danish and oilier CDC funded studies. The first, from 

then Congressman Dave Weldon, a physician with training in illllllUlology presented at the 

Autism One conference26 TIle second is a smnmary provided by SafeMinds. entitled, "Vaccines 

and Autism What Do EpideIlliological Studies Really Tell US?,,27 Also provided by SafeMinds 

is an analysis by Mark Blaxill of the Danish study published in Pedialrics which concludes the 

paper provided distorted and misleading infol111atioll. Thorsen is a co-author of the paper with 

Madsell. 28 

In April 2012. Brian Hooker published an article online at Age of AlitiSII/Q which detailed 

infol111ation received from the CDC through tbe FI-eedom of Iufolluation Act (FOLA) (emails and 

other COlllllIUlications) which indicated tbat the statistical value of the researcb is questionable, 

that the eady research did, in fact indicate that autism "rates are still going down" after the 

elimination of thimerosal from Danish Vaccines. JB Handley also discusses the Danish studies 

26 http://wv.'w.vce.01'gtnlerclll)'fWeldon.pdf 

27 bttp"!JW\\'W.safemmds..ocglnewsidocumentsNaccmes%20and%20AutJ.<ml.%20EpidemiQlogy%20Rebuttal-pdf 

28 http://www safelllin4s.orgiresearchIBlaxill-DelllllilIkAutjhlnThjlllerosalPediatrics,pdf 

29 bttp:!/www.ageofautislll.comi2012i04!re.isiting-demnark-lllore-rotten-tban-ever.html 
136 


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fiaudulent outcomes 011 Age of Autism, which also provides links to a CDC letter (Signed by Dr. 

Jose Corder030) to the Editor of Pediatrics askillg that the paper be published (after it was 

rejected by two other journals),3J 

As a sidebar, a March 2012 email from Dr. Madsell, the lead author in the Pediatrics paper, 

confirms that thimerosal was removed from vaccines in Dellillark in 1992 and also states that he 

(Dr. Madsell) is no longer involved ill epidemiology research, 

In the dozen years since the House Committee on Oversight and Govefllillent Reform first 

looked into the govenllllent's handling of the epidemic rise in rates of autism spectnllll disorder 

and its possible link to vaccine injury, the CDC became party to a $16 million investment in 

Denmark to obtain research studies to exonerate the vaccine program. As much as $2 million of 

that illvestment is alleged to have been absconded by Poul TI101'sen, the researcher who canle to 

the CDC as an employee, earned enough \nlSt at the CDC to influence grant direction, and in a 

breach of federal policy, acted as principal investigator of the program where he had directed the 

ftmds. 

Even after being indicted by the US Govefllillent for mail fi'aud and money lalmdering, Dr. 

Thorsen continues to collabol'ate with at least one CDC employee (Diana Schendel) and his 

papers promoted on the CDC website, Thorsen also faced charges of tax evasion in Denmark 

which were dismissed for technical reasons (which means the matter remaillS available for 

refilling). He continues to be employed in Denmark. The US has yet to extradite him, although 

he may have entered the US to make a poster session presentation in San Diego in early March 

2012, As of late October 2012, TIlOrsen is listed among the "Most Wanted Fugitives" by the 

Office of the Inspector General ofHHS. 

Many questions remain regarding the gross mismanagement 0[$16 million and the 

management of the criminal case. TIley include: 

Question: Can it be that Thorsen acted alone? (Many feel it is llluikely.) Are the CDC and/or 

AarhllS University seeking to make TIl0rsen a scapegoat? 

Question: Is it possible for the very same Justice Department that used TIlOfsen's research 

against families seeking compensation in the Vaccine Injury Compensation Program to present 

anlmbiased and effective prosecution? 

Question: Who were the career CDC employees who allowed Dr. Thorsen to become principal 

investigator of the Denmark study? (Ethically he should not have been allowed to since he 

played a significant role in developing the gI'ant and seeing it awarded to Dellillark. He in 

essence personally benefited from the gI'ant which he helped direct to Dell1nark -even before the 

criminal activity), 

30 Dr. Cordero was FOlUlding Director oflhe National Center on Birth Defects and Developmental Disabilities who 

has since left the CDC now serves on the Interagency Autism Coordinating ColIUllittee as a public member. 

31 http://v.'ww,a2eofautis!11.comJ2010/03/first-fraud-dr-poul-thorsen-and-the-original-dallish-study.html 
137 


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10lPage 

Question: Does the CDC continue to fund research in DenmarJc? 

Question: WIIO at the CDCIHHS was responsible for overseeing the $16 million dollar grant to 

Demnark? How did they not see the fraud? 

Question: More than 18 months after the indictment, what is the status of the prosecution? 

Question: WIly are the Danes not cooperating on the extradition? 

Question: Did Thorsen actually enter the US in March 2012 mmoticed? If so, how did he do so 

mmoticed? 

Congressional Oversight Needed: The POtU Thorsen management in and of itself calls for 

oversight. Given the inlportance the research (he was pivotal in managing) has played in both the 

10M's review of the matter as well as the emphasis placed on this data by the govermnent in the 

Autism Omnibus proceedings of the National Vaccine Injury COll1pensation Program, an inquiry 

is lU'gently needed. Autism has gone from a national epidemic to a national emergency with rates 

73% higher than the initial inquiry in 2007 of children bom in 1995. 32,33 

SafeMinds and the Elizabeth Bilt Center for Law & Advocacy on behalf of the community have 

asked the Congress to take action on this lnatter, (www.safelninds.org & www,ebcala.org) 

Concluding Comments 

The entire history of research evaluating the possible link between exposlU'e to toxins such as 

thimerosal, vaccine injuries and the dramatic rise in the prevalence in autism rates in the United 

States shows a history of research irregularities. 

Examples of this include the now infanlOus Verstraeten Vaccine Safety Datalink Study, the 

initial fmdings of tlle generation zero analysis tmcovered by Safe.Minds through FOIA 

Requests34 fOlllld "Autism risks were the highest of all the diagnostic codes, willi a relative risk 

at one month of 11.35 between the high and zero exposure groups." Dr. Verstraeten appears 

never to have written this initial data up in a report. Instead he worked with his CDC colleagues 

to produce a second generation of the data which was presented at Simpsollwood,35 

The report generated from the 'generation one' data reduced the relative risk by more tllan 75 

percent (but still fOlllld problems with expOSlU'e to thimerosal through infant vaccines.) By the 

time this data was presented publicly for the first time, at the Boston meeting of the 10M, Dr. 

32 The CDC released data in March 2012 indicated the prevalence of autism of children bom in the United States in 

2000 is 1 in 88. with the rate for boys at 1 in 54, This is a 73 percent increase from their first report in 2007. 

31 Wlule there is no reference to the thimerosal debate ill the CDC report, the 2000 US birth cohort would have been 

exposed to tlumerosal in their infant vaccines, willie Denmark removed an presetvatives from their cluldretl' 5 

vaccines in 1992. 

J4 ht!p:iiwww.safeminds.orgiresearchllibrarviGenerationZeroPowerPoint.pdf 

35 http://v..,\\'W.safeminds.org/gOVenUllent .. affairslfoia/SimpSOlIWood Transcript.pdf 
138 


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Thomas Verstraeten had negotiated and accepted a job with a vaccine manufactmer in his home 

cOlmtry of Belgimu, out of the reach of US authorities includiug Congress. 

The rOM proved tmable to separate their desire to protect immmuzatiou policies from dleu' 

charge to investigate vaccule uljm'ies and neurodevelopmental delays such as autism. The federal 

investment in research as noted by Dr. Weldon has put too heavy an emphasis on epidenJiology, 

which cannot truly answer the question, wlule ignoring more objective studies such as 

laboratOly, aniIual and cliIllcal research. (And evidence indicates that the CDC may have 

directed the rOM through their contracting mechanism to develop d!e conclusion the agency 

desired. A transcript36 of the January 12, 2001 closed door meeting of the rOM panel (before fue 

actual review had begtm) that was leaked had provided several statements by the 10M 

coordinator Dr. Kafuleen Stratton and Comnuttee Chair, Dr. Marie McCormick They include: 

From Page 33: Dr. McComlick: .. .[CDC] wallts liS fa declare, well these things are prettll safe 

all a populatiol/ basis ... 

From Page 74: Dr. Stratton: . .. I7/e point ofllo retllm, the line we willI/at cross in public policy 

is plIII the vaccine, change the schedule. fVe could say if is tillle to revisit (his, bllt we would 

never recommend that level. Even rec01lJIlIelldillg research is recolI/mel/dations for policy. We 

wouldn 'f say compel/safe, we wouldn 'f say Pill! the vaccille, we wOllldn 't say stop the program. 

Page 97: Dr. McCOlmick: ... we are not ever going to cOllie dowlI that [al/tism) is a tme side 

effect. 

In March 2004, the 10M hmuunization Safety Review Couunittee UI an egregious exclusion of 

'hard data' of a munber of animal studies in favor of solely rely the CDC ftmded epidelniological 

evidence, would (including those in which Thorsen played a role) issue a repOlt that concluded 

"The body of epidemiological evidence favors the rejection of a causal relationship between 

thimerosal-containing vaccines and autism." 

The CDC which is responsible for promotulg immunizations, ftmded all of the studies that were 

used by the 10M, who was under contract with d!e CDC to evaluate the possible links between 

vaccines and autism. The rOM conclusions, which according to the transcript references were 

pre-detelmined, (and stl'Ongly influenced by CDC) were used to deny justice to 5,000 falnilies 

wid! claims in the Vaccine hljury Compensation Program and to deter future reSeal-dl. 

hI a contradiction to the 10M report, a Jtme 2004 private email, the 10M Chair, Dr. McCornllck 

stated, "The couuuittee accepts that under certain conditions, infections and heavy metals, 

including fuimerosal, can injure the nervous system. ,,37 

36 http://www.l'utchi\drenfirst.orglmedial6.4.pdf 

J1 http://www.putchildrenflfst.orglmedial6.17.pdf 
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121 P age Ainds 

Dr. Bernadine Healy a fornler Director of the National lnstitutes of Health (Nlli) the largest 

U.S. federal agency responsible for conducting and supporting medical research and a highly 

respected research scientist published an 3lticle in US News and World Report in which she 

stated. "So as a trigger, vaccines carry a ring of both historical and biological plansibility.,,38 

Dr. Healy stated in a CBS intelview in 2008: 39 

" ... there is a complete~v expressed CO/Kem -- that they don't want to pursue a hlpothesis 

[vaccine=autism} because that hvpotliesis could be damaging to the public health COllllll1ll1itv at 

large by scaring people. First of all, 1 think the public's smarter than that. The public values 

vaccines. But 1II0re importamlv, 1 dOl/It tMnk you should ever tum YOllr back all ally sciellfijic 

hypothesis because you're afraid of what if might show ... the 1lI0re .1'011 delve illfo it, ifyolllook at 

the basic science, if you look at the research that's beell dOlle in animals, ifyoll also look at sOllie 

of these individual cases, and ifyoll look at the evidence that there is no lillk, what 1 come awav 

with is the question [whether vaccines contribute to autism} has IIOt been answered. " 

With the Thorsen indictment, one sees the credibility of all of the data the CDC funded to be 

questionable. One can only ask what evidence remains if the Verstraeten paper and all of the 

Thorsen papers were struck from the debate. A fhll consideration for a retraction of the 21 

Thorsen authored papers funded in the CDC -Demnark project is needed. A reconsideration of the 

effect of the removal of these papers from government's charge that vaccines and their 

ingredients have no connection to the epidemic increase in autism rates to 1 in 88 children OOm 

in 2000 is walTanted. 

About the Author: Beth Clay 

This repoli was prepared by Ms. Beth Clay. Senior Vice President. Capitol Strategy Consultants. 

hlc. a consultant to SafeMinds. Ms. Clay is the fonner Senior Professional Staff Member in 

charge of the US House of Representatives Connnittee on Government Reform and Oversight 

health investigations under then Chainnan. CongreSSlll311 Dan Burton of Indiana. Ms. Clay lllay 

be reached at bclay@dc-strategy.colll. 

38 h!1p:lll1ealth. usn"w,. comlhealth-llewsimanaging-YOlu--healthcarelbraill-al1d.bel""'10ri articlesl2008!04!IO/fightingthe~autism-vacciIle·war 

39 http://www.cbsnews.comiS301-5008031624090144-500803.1111111 
140 


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131 P age Minds 

Exhibit 1 

Bibliography of Poul Thorsen Autism Papers 

1: Abdallah MW, Larsen N, Grove J, N0rgaard-Pedersen B, Thorsen P, Mortensen EL, Hougaard DM. 

Amniotic fluid inflammatory cytokines: Potential markers of immunologic dysfunction in autism spectrum 

disorders. World J Bioi Psychiatry. 2011 Dec 19. [Epub ahead of print] PubMed PMID: 22175527. 

2: Guinchat V, Thorsen P, Laurent C, Cans C, Bodeau N, Cohen D. Pre.., peri- and 

neonatal risk factors for autism. Acta Obstet Gynecol Scand. 2012 Mar;91 (3):287-300. doi: 10.1111/j.16oo0412.2011.01325.x. Review. PubMed PMID: 22085436. 

3: Abdallah MW, Larsen N, Grove J, N0rgaard-Pedersen B, Thorsen P, Mortensen EL, 

Hougaard DM. Amniotic fluid chemokines and autism spectrum disorders: an exploratory study utilizing a 

Danish Historic Birth Cohort. Brain Behav Immun. 2012 Jan;26 (1):170-6. Epub 2011 Sep 10. PubMed 

PMID: 21933705. 

4: Pamer ET, Thorsen p, Dixon G, de Klerk N, Leonard H, Nassar N, Bourke J, Bower C, Glasson EJ. A 

comparison of autism prevalence trends in Denmark and Westem Australia. J Autism Dev Disord. 2011 

Dec;41(12):1601-8. PubMed PMID: 21311963. 

5: Hvidtj0m D, Grove J, Schendel D, Schieve LA, Svrerke C, Emst E, Thorsen P. Risk of autism spectrum 

disorders in children bom after assisted conception: a population-based follow-up study. J Epidemiol 

Community Health. 2011 Jun;65(6):497-502. Epub 2010 Jun 27. PubMed PMID: 20584728. 

6: Atlad6ltir HO, Thorsen P, Schendel DE, 0stergaard L, Lemcke S, Pamer ET. 

Association of hospitalization for infection in childhood with diagnosis of autism spectrum disorders: a 

Danish cohort study. Arch Pediatr Adolesc Med. 2010 May; 164(5):470-7. PubMed PMID: 20439799. 

7: AUad6ltir HO, Thorsen P, 0stergaard L, Schendel DE, Lemcke S, Abdallah M, Pamer ET. Matemal 

infection requiring hospitalization during pregnancy and autism spectrum disorders. J Autism Dev Disord. 

2010 Dec; 40(12):1423-30. PubMed PMID: 20414802. 

8: Lauritsen MB, J0rgensen M, Madsen KM, Lemcke S, Toft S, Grove J, Schendel DE, Thorsen P. Validity 

of childhood autism in the Danish Psychiatric Central Register: findings from a cohort sample bom 1990-

1999. J Autism Dev Disord. 2010 Feb; 40(2):139-48. Epub 2009 Sep 1. PubMed PMID: 19728067. 

9: Atlad6ltir HO, Pedersen MG, Thorsen P, Mortensen PS, Deleuran B, Eaton WW, Pamer ET. Association 

of family history of autoimmune diseases and autism spectrum disorders. Pediatrics. 2009 Aug; 

124(2):687-94. Epub 2009 Ju15. PubMed PMID: 19581261. 

10: Sultensch0n HN, Lauritsen MB, EI Daoud A, Hollegaard M, Jorgensen M, Tvedegaard K, Hougaard D, 

B0rglum A, Thorsen P, Mors 0. A population-based association study of glutamate decarboxylase 1 as a 

candidate gene for autism. J Neural Transm. 2009 Mar; 116(3):381-8. Epub 2009 Jan 13. PubMed 

PMID: 19139806. 

11: Hvidij0m D, Schieve L, Schendel D, Jacobsson S, Svaerke C, Thorsen P. Cerebral palsy, autism 

spectrum disorders, and developmental delay in children bom after assisted conception: a systematic 

review and meta-analysis. Arch Pediatr Adolesc Med. 2009 Jan;163(1):72-83. PubMed PMID: 19124707. 

12: Pamer ET, Schendel DE, Thorsen P. Autism prevalence trends over time in Denmark: changes in 

prevalence and age at diagnosis. Arch Pediatr Adolesc Med. 2008 Dec; 162(12): 1150-6. PubMed PMID: 

19047542. 

13: Maimburg RD, Vaeth M, Schendel DE, Bech SH, Olsen J, Thorsen P. Neonatal jaundice: a risk faclor 

for infantile autism? Paediatr Perinat Epidemio!. 2008 Nov; 22(6):562-8. PubMed PMID: 19000294. 

14: AtladOltir HO, Pamer ET, Schendel D, Dalsgaard S, Thomsen PH, Thorsen P. Time trends in reported 

diagnoses of childhood neuropsychiatric disorders: a Danish cohort study. Arch Pediatr Adolesc Med. 

2007 Feb; 161(2):193-8. PubMed PMID: 17283306. 
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141 P age 

15: AtiadOtlir HO, Pamer ET, Schendel 0, Dalsgaard S, Thomsen PH, Thorsen P. Variation in incidence of 

neurodevelopmental disorders with season of birth. Epidemiology. 2007 Mar; 18(2):240-5. PubMed 

PMID: 17202868. 

16: Skogstrand K, Thorsen P, N0rgaard-Pedersen S, Schendel DE, S0rensen LC, Hougaard OM. 

Simultaneous measurement of 25 inflammatory markers and neurotrophins in neonatal dried blood spots 

by immunoassay with xMAP technology. Clin Chem. 2005 Oct;51(10):1854-66. Epub 2005 Aug 4. 

PubMed PMID: 16081507. 

17: Larsson HJ, Eaton WW, Madsen KM, Vestergaard M, Olesen AV, Agerbo E, Schendel 0, Thorsen P, 

Mortensen PS. Risk factors for autism: perinatal factors, parental psychiatric history, and socioeconomic 

status. Am J Epidemio!. 2005 May 15; 161(10):916-25; discussion 926-8. PubMed PMID: 15870155. 

18: Madsen KM, Lauritsen MS, Pedersen CS, Thorsen P, Plesner AM, Andersen PH, Mortensen PB. 

[Thimerosal and the occurrence of autism. Negative ecological evidence from Danish registry-data]. 

Ugeskr Laeger. 2004 Sep 13; 166(38):3291-3. Danish. PubMed PMID: 15496004. 

19: Madsen KM, Lauritsen MS, Pedersen CS, Thorsen P, Plesner AM, Andersen PH, Mortensen PS. 

Thimerosal and the occurrence of autism: negative ecological evidence from Danish population-based 

data. Pediatrics. 2003 Sep;112(3 Pt1):604-6. PubMed PMID: 12949291. 

20: Madsen KM, Hviid A, Vestergaard M, Schendel 0, Wohlfahrt J, Thorsen p, Olsen J, Melbye M. [MMR 

vaccination and autism-a population-based follow-up study]. Ugeskr Laeger. 2002 Dec 2; 164(49):5741-

4. Danish. PubMed PMID: 12523209. 

21: Madsen KM, Hviid A, Vestergaard M, Schendel D, Wohlfahrt J, Thorsen p, Olsen J, Melbye M. A 

population-based study of measles, mumps, and rubella vaccination and autism. N Engl J Med. 2002 Nov 

7; 347(19):1477-62. PubMed PMID: 12421889. 
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Il\DIANA UNIVERSITY 

DEPARTME\"T OF PSYCHIATRY 

HOUSE COMMITTEE ON OVERSIGHT AND GOVERNMENT 

REFORM HEARING ON AUTISM 

Thoughts regarding current interagency coordination on research, research focus ofthe Feds, and 

proposed improvements regarding interagency coordination, research focus and funding: 

Need for increased accountability for funded agencies and projects to show productivity and 

promise with delivering research related to the project for accessibility and transportability of 

the results into the service, research and teaching fields. 

Need for focus on implementation science: great deal of funding has gone for pilot work, tests 

of feasibility and usability studies. However, studies demonstrating the actual transportability 

and applicability of the interventions by consumers have not been at a pace effective for 

bringing research to practice. 

Innovations in technology should be at the forefront of research focus. 

The application and review process for federal funding is an effective process. However, for the 

grantees, the process is a long and disruptive process, making it challenging to continue without 

interruption to daily work during grant cycles. As such, longer grant cycles or options for 

continuation of grants showing specific criteria for adequate process would be most useful, 

particularly for groups working on long-term systems change and implementation; these studies 

that take several years of full activity to demonstrate their full value and merit and the funding 

likely dissipates prior to full implementation and the monies are then not guaranteed to the 

same grantees and projects may result in unfinished work. 

Much research has focused on etiologies and singular methodologies for intervention. Though 

important, the literature has also shown that etiology is likely complex with a number of 

potential causalities. In addition, research also suggests that there is not one intervention of 

choice and that often a combination of interventions result in optimal outcomes. As such, while 

study into the multiple etiologies and comprehensive treatment packages continues to be 

essential, given this complexity and the need to bring the research as we know into practice, we 

must also invest at current and ongoing on training others who will be able to begin to apply 

what we know with fidelity. 

• A great deal offunding has been provided to University-based research teams collaborating with 

one another across the country. Though important, there must be funding also allocated to 

teaming between the University research teams and the University and/or community service 

teams and agencies who must be much more integral in informing the research plan and are 

often responsible for implementing the practices. 
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There has been an abundant focus on the genetic and environmental causes of the disorder. 

Though genuinely important to better understand contributing causal factors and thus potential 

interventions, it is also important that the focus be turned to implementation issues: current 

interventions, the ability for interventions to be effectively trained, applied with fidelity and 

maintained by those in service fields (e.g., schools, community mental health agencies). 

Innovative programming focused on models for effective teaming and collaboration focused on 

transporting awareness, information and training across communities and systems (school, 

home, medical, community) is also needed-though cross agency collaboration and 

coordination is continually promoted, effective means for conducting this has not been outlined 

and there are apparent struggles in agencies knowing how to effectively do so and still maintain 

their current structure, policies, procedures and so on. 

Despite a stated emphasis of the IACC Strategic Plan, adults on the spectrum have not yet 

attained the focus needed given the intensive push on early evaluation, identification and 

intervention. However, many of these individuals are quite capable of having active roles in 

society and reaching personal potential should individuals receive adequate training for how to 

support and challenge them. 

In addition, those with ASD and severe levels of cognitive impairments have been relatively 

understudied and underserviced given the intense focus on inclusive practices and individuals of 

all levels being pushed into general education without the adequate training and awareness of 

special education and general education teachers. Again, the IACC Strategic Plan notes this as 

an area of needed focus but this shift has not yet been realized. 

With the cost to society currently $35-90 billion, developing systems for shared responsibility of 

the community and engagement in the collaboration and care of these special individuals is 

essential to their community integration, assist and outcomes. An intensive effort at 

community education and training and models for effectively providing and evaluating such 

practices is needed so that it can be replicated in communities across the United States and 

meet another stated emphasis of the IACC not yet met. 

Many very basic strategies can be easily taught in formats that are accessible and practical for a 

wide range of providers inclusive of school personnel, medical providers, and community 

caregivers so that the interventions used are proactive, consistent and accessible to all who will 

be in contact with those with an ASD in community settings. Various programs such as HANDS in 

Autism and OCALI have a state or regional influence but could be accessible more nationally 

with funding mechanisms dedicated to supporting these efforts. 

In several points above, it is clear that the research to practice gap remains. Service programs 

must be a greater voice in informing research priorities as well as practical aspects relating to 

effectively carrying out the proposed research design and implementation. Those in service will 

ultimately need to utilize the proposed interventions in practice and will greatly inform what is 

most needed, will be utilized within the parameters of practice and so on. Without this 

collaboration a great hazard is spending time and money on efforts that cannot or will not be 

replicated-a gap between research and practice. Further, quality work and innovations are 

likely already occurring at the service level but have not been adequately and empirically 
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evaluated to establish their merit. Yet research is often conducted for newly evolved practices 

that are rapidly conceptualized and carried out without adequate piloting and troubleshooting 

beforehand, sacrificing a fully conceptualized, developed or useable and feasibly model by 

service groups. 

IACC has made a grand effort at attempting to inform and gain insight from a wide consumer 

base inclusive of service providers. However, such effort should continue to expand to include 

input from a wider consumer base. 

Many areas emphasized above have been noted within the Interagency Autism Coordinating 

Committee 2011 Strategic Plan for Autism Spectrum Disorder Research as identified priorities for 

upcoming research. The above are to add emphasis to these areas with a strong need for 

representation and input by leaders in the field of Implementation Science who understand the needs 

and the practicalities of making systems changes. The shift to Community Based Participatory 

Research and to Effectiveness Research as well as the large focus on implementation within the 

community across a range of providers of various backgrounds and experience is a significant shift 

from the traditional research on single interventions by trained therapists in highly controlled 

settings. 

Naomi B. Swiezy, Ph.D., HSPP 

Alan H. Cohen Scholar in Psychiatry 

Director, HANDS in Autism Interdisciplinary Training and Resource Center 

Fesler Hall 302 

Department of Psychiatry 

Indiana University School of Medicine and the Riley Hospital for Children at Indiana University Health 

Indianapolis, IN 46202 

nswiezy@iupui.edu 

www.handsinautism.org 
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along with his 

hehavior and 

The diagnosls cmne 

and bad 

behavior and inability to get 

good to finally know the true of his 

did not always know how best to help him. 

share what I have and lend a 

alone and 

support. All The Lave will help 'lOU 

resources ta lighten your load. 
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Testimony 

As a mother of a child who suffers from Autism I ad\'ocate daily for my son to 

have a better quality of life. I have also started a nonprofit organization called All The 

Love, Inc. The purpose of All The Love, Inc. is to raise awareness about Autism and the 

importance of early detection in the African American, Hispanic, and other minority 

groups. African American and Hispanic children have the highest number of reported 

cases of Autism (to date) in the United States. 

In speaking with parents from an around the globe I have come to understand 

that parents are not only concerned about finding a cure for Autism. They struggle to 

live \\ith Autism. Parents continue to have unwavering and unconditional love for their 

children while experiencing glimmers of hope, a subdued unsteady existence caused by 

an indecisive government and an irresolute economy. Parents' are mainly concern 

about what will happen to their children as they get older - transition to adulthood. 

In a book entitled Fearless vvritten by Max Lucado, he asks a thought provoking 

question. "If you could hover afear magnet over your heart and extract every last 

shaving of dread, insecurity, or doubt, what would remain? I envision the day where my 

fear will dissipate and trust our government to act in the best interest of our autistic 

children by asking parents what we need or rely upon the most to insure our children's 

success. 

My son Jeremiah met all developmental milestones within normal limits. Yet, 

Jeremiah was misdiagnosed. In school, his teachers suggested that academic 
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performance, inconsistent and unpredictable behmior were the result of separation 

anxiety which stemmed from my divorce and his father relocating to New York City. It 

was also proposed that I also put Jeremiah on medication and I refused. Is medication 

a quick fix for schools? Denouncing to haye my son medicated and frustrated I began to 

share my concerns about my son's behavior ",ith his pediatrician. She suggested that 

that I have my son tested. At the conclusion ofthese series oftest (oyer a span oftime) 

evidence revealed that Jeremiah's exhibited restricted areas of interest, repetitive 

behaviors in combination \\ith language and socialization difficulties was an indication 

of the possibility of a Pervasive Developmental Disorder which is on the Autism 

Spectrum. 

African American and Hispanic children ",ith Autism tend to be diagnosed later 

than other children \\ith Autism. The reasons for later diagnoses include a lack of access 

to quality, affordable, culturally competent health care, according to Martell Teasley, an 

Associate Professor in Florida State's College of Social Work who has conducted a 

comprehensive review of research literature on autism and specifically AfricanAmerican children. In addition, the stigma attached to mental health conditions ",ithin 

the black community contribute to misdiagnoses of autism, and underuse of available 

treatment services. 

Parents must take an active role in their children's education and healthcare. It is 

important that we know our rights as parents when dealing ",ith educators and 

administrators \\ithin the school system. I battled and won my fight against the local 

school system to get my son placed in an appropriate educational situation. He now 

attends a private school that specializes in educating children \\ith Autism. 
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According to the CDC 95.9% of Black children do have medical insurance. 

However, many of these children are poor and receiYe healthcare via Medicaid, limiting 

their options for physicians. Lastly, parents must understand their rights and become 

familiar \\ith the laws, like the American Disabilities Act that prohibits discrimination 

based on a disability. 

Autism is not something a child simply "grows out of', there are many necessary 

treatments, therapies and school-based programs that can assist children \\ith 

overcoming some of these developmental challenges. "Prepare to be asked how 

Medicaid and other important programs helping those affected by Autism can be cut" 

Autism Society, President Scott Badesch \\Tote in a message this week to the group's 

members. In January, funding for most federal programs is set to be slashed by at least 

8.2 percent under a process known as sequestration, which was triggered last year when 

Congress failed to reach a budget deal. 

Unless federal lawmakers act, the consequences could be severe for Americans 

with disabilities, advocates say, with more than $100 billion in automatic spending cuts 

touching everything from special education to research and disability employment 

programs. (Disability Scoop, 2012) As it stands right now, health insurance companies 

do not cover services that are required for children who have Autism. Most of these 

services are paid by the parents and are deemed an out of pocket expense. 

Autism is a developmental disorder that is characterized by impaired 

development in communication, social interaction, and behavior. Autism statistics from 

the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 88 

American children as on the autism spectrum-a ten-fold increase in prevalence in 40 
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years. Careful research shows that this increase is only partly explained by improyed 

diagnosis and awareness. Studies also show that autism is four to five times more 

common among boys than girls. 

An estimated lout of 54 boys and 1 in 252 girls are diagnosed. All children 

should be screened for autism at 18 months and again at 2 years of age, and at any time 

a parent raises a concern about autism spectrum disorders. Some children might not 

show the signs of developmental delays (social, emotional and cognitive) an action or 

event marking a significant change or stage in development. This is the first step that a 

parent can take although it does not suggest that your child has Autism. An early 

diagnosis and intervention are associated with better outcomes that may lead to 

identifying a potential diagnosis of Autism. 

People all around us need our help and I charge you to become more aware about 

the disparities that exist amongst children ~ith Autism. Our children depend on these 

services and we as parents want to our government to aid in our success and help our 

children to maximize their fullest potential. 

Our children are a blessing! the bible says that Every good gift and every perfect 

gift isfrom above, coming down from the Father of lights with whom there is no 

variation or shadow due to change. James 1:17. 
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BRIAN S. HOOKER 12/05/2012 

TESTIMONY FOR AUTISM HEARING - 11/28/12 

My name is Brian Hooker and I hold a PhD in Biochemical Engineering. 

am also the very proud father of a neurologically impaired fourteen-year old 

young man, Steven. Steven received all of his infant vaccines through 15 

months of age and subsequently regressed into what is commonly called 

autism. 

Unfortunately, Steven's story has become much more common and we 

have to ask: What role, if any, did vaccines play in the emergence of 

symptoms that will be most likely a life-sentence for a generation of 

children? A life sentence where these children are unable to speak, are 

unable to take care of simple bodily functions, are in near-constant chronic 

pain, and struggle to control their behavior? These children will never 

realize their full potential and their voices will never be heard. 

For all the children still to be born, it remains more than relevant to let our 

voices ask: What role, if any, have vaccines played in the rising epidemic of 

autism-up from 1 in 10,000 cases in 1983 to a staggering 1 in 88 in 

2008? Is it merely a coincidence that during this same time period, the 

vaccine schedule for children in the US has shot up from 10 vaccinations to 

49, making our country the most vaccinated nation in the world? 

If we simply say over and over again that vaccines are safe and all the 

stUdies prove it, might it be lost on all those busy parents that mercury, 

through the organic compound thimerosal, is still in various U.S. vaccines, 

at levels many times the EPA toxic exposure limit? 

What does the evidence suggest and are we willing to look at it objectively, 

fairly, with science as our maiden-and with the kids, not politics our 

guiding light---despite a public health tradition in this country that gives 

vaccines protected status? 

So far, based on my years of research into what the vaccine studies 

actually find and how they have been conveniently interpreted; and despite 

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BRIAN S. HOOKER 12/05/2012 

my efforts to engage many at the center of these studies, there appears, 

sadly, an unwillingness to move beyond protected positions. 

And the public is deprived of the full accounting it deserves, as those who 

might question the safety of vaccines, are marginalized, or worse. 

But perhaps that is because the evidence connecting vaccines and their 

chemical components to neurological impairments, including autism, has 

not been laid out in the way I am going to reveal now. 

While I am the parent of child with what is commonly called autism, my 

research and scientific focus on the data around the issue of vaccines and 

autism is what I believe to be most relevant to all of us here today ... and 

most telling. 

I know that your concern for the health and safety of our children is 

unwavering .... and that you will be guided by that, above all else. 

With that in mind, let me start by saying that over a period of 8 years during 

which I submitted more than 100 Freedom of Information requests to The 

Centers for Disease Control--the CDC--most of which were denied, I have 

nevertheless uncovered evidence of a disturbingly clear connection 

between infant vaccines and the incidence of neurodevelopmental 

disorders, including autism. 

I have found, further, that many of these vaccines contain mercury in the 

form of thimerosal at many times the EPA toxic exposure limit. 

Despite these facts the CDC consistently denies the existence of a 

relationship between any vaccine or vaccine component, including 

thimerosal, and autism, and has worked very hard to bury the fact that 

thimerosal, a potent neurotoxin, has played a significant role in the current 

autism epidemic, as shown by their own studies. 

On one single day, when my son was 2 months of age, he received 62.5 

mcg. of mercury, which exceeded the EPA safe exposure limit by 130 

times. Many health professionals will erroneously tell you that mercury has 

[Type text] Page 3 
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BRIAN S. HOOKER 12/0S/2012 

been removed from of our vaccines. That is not true. The vast majority of 

seasonal influenza vaccines distributed in the U.S. today contain 25 

micrograms of mercury (http://www.vaccinesafety.edu/thi-table.htm). The 

seasonal flu vaccine, along with the H1N1 vaccine recommended in 2009, 

is given routinely to pregnant women in their first trimester as well as 

infants down to 6 months of age. Mercury partitions preferentially to the 

placenta and then to the unborn child, meaning that for the 2010 flu 

season, these very tiny unborn children were exposed to 50 micrograms of 

mercury. Interestingly, as reported by the CDC's own VAERS database, 

the fetal death rate during that particular period jumped by 4250% as 

compared to the previous "flu season" (Goldman 2012 Human and 

Experimental Toxicology, published online Sept. 27, 2012, Attachment 1). 

I agree with the Oversight and Government Reform Committee's 2003 

Mercury in Medicine Report. Mercury is a known, potent neurotoxin. 

Placing it in maternal and infant vaccines is at best irresponsible and, at 

worst, criminal. 

Even if you are not willing to condemn injecting infants and pregnant 

women with toxic mercury-containing vaccines, you would expect that the 

evidence was at least worthy of the concern and scrutiny of a taxpayer 

supported health agency like CDC that should be accountable to the public. 

Yet, over my 8 years and more than a hundred Freedom of Information 

requests to the CDC regarding the possible link between thimerosalexposure in infant vaccines and the incidence of neurodevelopmental 

disorders, including autism, I've encountered a Berlin-wall like resistance. I 

have been shut out of the information necessary to get to the bottom of the 

question. 

During all these years, the CDC has consistently refused to release the 

vast majority of the pertinent data, reports and correspondences to me, a 

father who has a strong right to understand how the CDC conducted its 

studies and reached its negative conclusions about the relationship 

between vaccines and autism. 

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BRIAN S. HOOKER 12/05/2012 

To paint the issue more broadly, the CDC consistently denies the existence 

of a relationship between any vaccine or vaccine component, including 

thimerosal, and autism, and while doing so, ignores the evidence contained 

in their own studies. 

The initial analysis of the data used in the CDC's own "landmark" study, by 

Verstraeten et al. published in 2003 in the Journal Pediatrics showed that 

infants exposed to the highest thimerosal levels in their vaccines at one 

month of age were 7.6 times more likely to receive an autism diagnosis 

(Attachment 2, "Generation Zero" study data for Verstraeten CDC 

thimerosal study). The children exposed to the highest doses of mercury 

from vaccines were 7 times more likely to receive an autism diagnosis than 

children who received the lowest doses of mercury!! It is clear that the 

CDC researchers responsible for this study worked very hard to bury this 

result via statistical manipulations as even the head researcher, Dr. 

Thomas Verstraeten entitled an email, regarding the consistent relationship 

between thimerosal and autism, "It just won't go away" (Attachment 3, Dec. 

17,1999 Verstraeten email to Robert Davis). Yes, the relationship between 

thimerosal and autism won't go away, no matter how expert the experts are 

at using science to obscure the data. 

Later at a secret CDC-vaccine industry representative meeting held in 

June, 2000, at the Simpsonwood Retreat Center in Georgia, convened to 

consider these shocking data, CDC scientist Dr. Phillip Rhodes who 

coauthored the study, stated, regarding the use of data methods to 

obfuscate the original disturbing analysis of the data, "So you can push, I 

can pull. But there has been substantial movement from this very highly 

significant result down to a fairly marginal result." (Simpsonwood June 

2000 Meeting Transcript, p. 107, http://putchildrenfirst.org/media/2.9.pdf). 

I was curious as to why the CDC did not publish the initial analysis of the 

Verstraeten data right away. But these comments by Dr. Rhodes at 

Simpsonwood made it evident why the CDC needed to revise its 

inconvenient initial findings. It took until November 2003 for the final 

analysis to be released via publication in Pediatrics, as the responsible 

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BRIAN S. HOOKER 12/05/2012 

CDC researchers pushed and pulled for 4 years to make the clear 

association between thimerosal and autism "go away." 

Although the CDC claimed that their landmark study proved there was no 

relationship between vaccines and autism, Dr. Verstraeten, who left CDC to 

work for vaccine manufacturer GlaxoSmithKline in July, 2001, stated in 

2004 regarding the study's final outcome, "The article does not state that 

we found evidence against an association, as a negative study would. It 

does state, on the contrary, that additional study is recommended, which is 

the conclusion to which a neutral study must come." (Attachment 4, 

Pediatrics 113:932, 2004) 

Rather than doing additional study, the CDC hired the Institute of Medicine 

(10M) to hold a meeting on "Vaccines and Autism" in February, 2004. 

Representatives of CDC and affiliated organizations presented 5 very 

flawed epidemiology studies, each of which I could discuss at length. 

Based solely on these five studies, the 10M Immunization Safety Review 

Committee issued a report in May 2004 stating, "The committee ... 

concludes that the body of epidemiological evidence fa.vors rejection of a 

causal relationship between thimerosal-containing vaccines and autism" 

and "In addition, the committee recommends that available funding for 

autism research be channeled to the most promising areas," meaning, 

don't do any more research on thimerosal and autism. Prior to the 

meeting, the ISR Committee chairperson Dr. Marie McCormick instructed 

the committee, "we are not ever going to come down that [autism] is a true 

side effect." (http://putchildrenfirst.org/media/6.4.pdf, p. 97). The CDC 

specified the outcome of this report before the fact and McCormick made 

sure the CDC's specifications were met. 

In 2009, this report was invoked by the Special Master in the National 

Vaccine Injury Compensation Program to refuse to award compensation in 

the autism "test cases" closing the door for any recompense to children 

maimed by high levels of vaccine-based mercury 

(http://www.uscfc.uscourts. gov/sites/defaultlfiles/vaccine _files/HastingsCedillo. pdf). 

[Type text] Page 6 
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BRIAN S. HOOKER 12/05/2012 

Are you beginning to see the pattern here? 

One of the 5 studies used to dismiss the vaccine-autism link was coauthored by Dr. Poul Thorsen, who has collaborated with the CDC from 

1998 to the present time. Dr. Thorsen is featured on the Department of 

Health and Human Services Office of Inspector General's Most Wanted 

Fugitive List as he was indicted on April 14, 2011 by a Federal grand jury 

on 22 counts of fraud and embezzlement. Dr. Thorsen was installed as the 

lead investigator for a cohort of scientists from Denmark to investigate the 

vaccine autism link using Danish databases. Thorsen's work was funded 

by a CDC grant of over $10 million dollars. Most of the funds were 

disbursed after he coauthored the aforementioned thimerosal-autism 

paper, which was reviewed prior to publication by Dr. Diana Schendel. 

While compiling the results for this publication, Denmark researchers 

deliberately withheld critical data that would have revealed a decline in 

autism rates in Denmark after mercury-containing vaccines were removed 

from the Danish childhood vaccine schedule in 1992 (Attachment 5). The 

manuscript was initially rejected by the Journal of the American Medical 

Association and the Lancet, leading medical journals. Dr. Coleen Boyle of 

the CDC then took the unusual action of advocating for the paper by 

submitting a letter pushing for expedited review by the journal Pediatrics 

(Attachment 6). The letter was signed by Dr. Jose Cordero, then Director 

of the CDC National Center for Birth Defects and Developmental 

Disabilities (Attachment 7). 

Dr. Thorsen has coauthored 36 peer-reviewed publications in collaboration 

with the CDC. Since his indictment by a Federal Grand Jury for fraud, he 

has coauthored four papers in collaboration with Dr. Schendel (Attachment 

8). 

Why is the branch of the CDC charged with responsiblility for autism 

research collaborating with a fugitive charged with defrauding the very 

agency, the CDC, engaging in this critically important research? Why 

haven't any of his stUdies been retracted or been subjected to review? 

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BRIAN S. HOOKER 12/05/2012 

The CDC is playing fast and loose with the truth when it promotes its spin 

on what scientific studies show about vaccines and autism. What I've 

disclosed briefly today is the very tip of the iceberg regarding the use of 

mercury, a known neurotoxin in vaccines. 

Please help us expose the malfeasance or downright efforts by the CDC to 

suppress the truth by bureaucratic spin. There must be a full investigation 

of the CDC's activities in the vaccine safety program and the National 

Center for Birth Defects and Developmental Disabilities. 

By pursuing such an investigation, you will help bring to light the 

information hidden in CDC files, some of which I have obtained and am 

providing to this committee today, that show our children have been and 

continue to be exposed to dangerous neurotoxins in vaccines, and that 

these vaccines have been linked to what is commonly called autism. 

There is no acceptable reason why mercury should not be banned from all 

vaccines. The second most toxic substance known to science has no 

place being injected into infants, pregnant mothers or any human. 

Through your efforts, we can take a long needed step toward ending this 

horrible epidemic and spare a generation of children from what happened 

to my wonderful, precious son. 

The history of this country is, in many ways, based on the idea that 

powerful political forces are not greater than the power of an idea, 

especially when that idea is guided by a search for truth, wherever it takes 

us, and a mission to protect the most vulnerable in our society. Please 

speak for them. 

Thank you for your attention. 

Brian Hooker, PhD., P.E. 

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Dear Mr. Boyington: 

Co-founder Bob Wright's to the the Record 

letter of December! 1 , 2012. thank you for the opportunity to 

provide this response to questions submitted Congressmen Meehan and Posey. 

aplJre<:iation for 

C0111nlunity and 

comments, please 

Stuart Spielman 

Senior Policy Advisor and Counsel 

Speaks 
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Response to Questions 

From Bob Wright 

CO-Founder, Autism Speaks 

1. Do you believe that vaccines and vaccine components should be studied to determine 

whether or not they might playa role in the autism epidemic? 

Many studies have been conducted to determine if a link exists between vaccination and 

increased prevalence of autism, with particular attention to the measles-mumps-rubella (MMR) 

vaccine and those containing thimerosal. These studies have not found a link between vaccines 

and autism. It remains possible that immunization might trigger the onset of autism symptoms 

in a child with an underlying medical or genetic condition. Autism Speaks is funding studies on 

the underlying biology of autism, including studies to better understand medical and genetic 

conditions that are associated with autism. 

The question of whether vaccines could trigger the onset of autism symptoms in a subgroup of 

children with certain genetic/medical forms of autism remains poorly studied. Regarding 

whether more research is needed, Autism Speaks concurs with the opinion provided by the 

National Vaccine Advisory Committee (NVAC) to the Interagency Autism Coordinating 

Committee (IACC). NVAC is an independent panel that oversees federal vaccine safety (see 

http://www.hhs.gov/nvpo/nvac/l. The NVAC completed their report in 2009 and the results of 

that report were included in the 2011 IACC strategic plan, as summarized below: 

From the 2011IACC Strategic Plan for Autism Research: 

"Of note, the Committee receives many public comments that reflect concerns about vaccines 

as a potential environmental factor in autism. Some members of the public are convinced that 

the current data are sufficient to demonstrate that vaccines do not playa causal role in autism 

and argue against using limited autism research funds to do additional vaccine studies when 

many other scientific avenues remain to be explored. At the same time, those who believe that 

prior studies of the possible role of vaccines in ASD have been insufficient argue that 

investigation of a possible vaccine/ASD link should be a high priority for research (e.g., a largescale study comparing vaccinated and unvaccinated groups). A third view urges shifting focus 

away from vaccines and onto much-needed attention toward the development of effective 

treatments, services, and supports for those with ASD. 

To address public concerns regarding a possible vaccine/ ASD link, it will be important for the 

IACC to continue to coordinate with the National Vaccine Advisory Committee (NVAC), a Federal 

advisory committee chartered to advise and make recommendations regarding the National 

Vaccine Program. 
159 


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In a 2009 report by the National Vaccine Advisory Committee (NVAC), it was recommended that, 

in the context of immunization research, the ASD clinical subset of particular interest is 

regressive autism (National Vaccine Advisory Committee, 2009 (PDF - 530 KS)). Although the 

NVAC stressed that the temporal occurrence of this regression and the immunization schedule is 

not evidence of a causal relationship, regressive autism warrants further research in rigorously 

defined subsets of ASD. The NVAC noted that studies in this subpopulation might involve 

comparison of immune cytokine profiles between regressive and non-regressive ASD to screen 

for differential immune system profiles, or prospective immunization responsive profiling in 

siblings of children with regressive ASD. In addition, the NVAC recommended that studies assess 

whether adverse events following immunization (e.g., fever and seizures) correlate with risk of 

ASD, and that immune response profiles be examined in ASD cases with a history of adverse 

events following immunization." 

2. Do you believe that a retroactive study of vaccinated and unvaccinated children would 

provide value to the debate over whether vaccines or vaccine components playa role in 

the autism epidemic? If so, why? It not, why not? 

Although a rigorously controlled study of vaccinated versus unvaccinated children would be 

difficult to carry out due to ethical and feasibility reasons, the question of how simultaneous 

administration of vaccines could potentially trigger onset of autism symptoms, especially in a 

genetically or medically vulnerable child, could and should be addressed through research. 

3. Are you concerned about the proposed changes to the DSM-V definition of autism will 

affect future research and access to services? 

Overall, the DSM-5 field trial findings do not support the idea that the proposed changes will 

exclude large numbers of individuals with autism, though further refinements may still be 

necessary. However, the field trials are based on a relatively small sample of mostly Caucasian 

school-age children assessed in an academic center. Additional studies with larger samples that 

include young children and adults from diverse backgrounds in community settings are needed. 

It will be important to ensure that language barriers, ethnic disparities and gender biases are 

not interfering with the ability to obtain a proper diagnosis. Autism Speaks is funding both 

retrospective and prospective studies to determine how the revisions to the diagnostiC criteria 

could affect how diagnoses are made and who can receive services. We want to ensure that all 

who struggle with autism symptoms will receive the treatment and services they need under 

future revisions. We are also dedicated to ensuring that autism is recognized as a lifelong 

condition, for most persons, with evolving needs for services across the lifespan. It is also 

important to gain a better understanding of how the DSM-5 criteria will affect autism 

prevalence estimates -which in turn could influence the nation's public health priorities. 

Autism Speaks is currently funding a study with the Centers for Disease Control and Prevention 

(CDC) to better address this issue. 
160 


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161 


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162 


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Autism Funded Environmental Research and Initiatives 2009·11 October 23,2012 

Neurodeveloomenta! Impacts of Gestationa! $100,000 Awarded in October, 2012 

2012 $100,000 In progress 

2012 $75,000 In progress 

In progress 

in In progress 

In progress 

In progress In progress 

2011 Walker, Cheryl ..... "y....,"""''- ...... .... '''- ... "'"' ..... ... " ... " ..... , ........ $208,125 In progress 

2011 In progress 

2011 In progress 

2010 i ..... ". $100,000 Completed 2010 $99,000 Completed 

Insert offset folio 97 here 80405.097

with study 

$65,000 $56,000 $56,000 

progress 

In progress 

In progress 

children with regression post vaccinatio

children identified but were fou

pre-existing serious medical conditions - 

dose to co,mp,letion 

Project to co,mc,letion 

In 
165 


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Bahn. Sabine Institute of Biomarkers and Diagnostics for ASO Basic & Clinical 3 11/1/2010 10/31/2013 Not due yet 1/1/2014 

Biotechnology 2010 

Slickgold, Beth Israel Deaconess The effects of disturbed sleep on Basic & Clinical 3 12/1/2010 11/30/2013 Not due yet 2/1/2014 

Robert Medical Center dependent memory consolidation and 2010 

daily function in individuals with ASO 

Chance, Steven University of Oxford Neuropathology of the Basic & Clinical 3 4/1/2011 3/31/2014 Not due yet 6/1/2014 

network in Autism: a comparison with 2010 

other structural theories 

Reznick. James University of North Using Parent Report to Identify Infants Basic & Cllnlcal- 3 6/1/2011 5/31/2014 Not due yet 8/1/2014 

Carolina Who Are at Risk for Autism Spectrum 2010 

Disorder (ASO) 

Hahn, Klaus University of North BI·directional regulation of Ube3a stability Basic & Clinical 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

Carolina by cyclic kinase 2011 

Leigh, Paul University of California, Economic Burden of Current and Future Basic & Clinical 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

Davis Autism 2011 

University of Physiological Studies in a HUman Stem Basic & Clinical- 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

Connecticut Cell Mode! of 15q Duplication Syndrome 2011 

LI, Xuekun Emory University 5-Hydroxymethy!cytoclne-Mediated Basic & Clinical- 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

Epigenetic Regulation In Autism Spectrum 2011 Disorders 

Rubenstein, University of California, A novel transplantation assay to study Basic & Clinical- 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

John San Francisco human PTEN ASD alleles In GABAergic 2011 

interneurons 

Beaudet. Arthur Baylor College of TMlHE deficiency and a carnitine Basic & Cllnlcal- 2 3/1/2012 2/28/2014 Not due yet 5/1/2014 

Medicine hypothesis for autism 2011 

Powell, Craig University of Texas Temporally Controlled Genetic Rescue of Basic & Cllnlcal- 2 3/1/2012 2/28/2014 Not due yet 5/1/2014 

Southwestern Medical Shank3 Autism Model 2011 

Center, Dallas 

Fallin, Dan! Johns Hopkins Genome-wide examination of DNA Basic & Clinical- 3 2/1/2012 1/31/2015 Not due yet 4/1/2015 

University methylation in autism 2011 

Kaiser, Martha Yale University Near·lnfrared Spectroscopy Studies of Basic & Clinical 3 2/1/2012 1/31/2015 Not due yet 4/1/2015 

Early Neural Signatures of Autism 2011 

Landa, Rebecca Hugo W, Moser Effects of Experiences on Basic & Clinical- 3 2/1/2012 1/31/2015 Not due yet 4/1/2015 

Research at Kennedy Social Cognitive Development in Young 2011 

Krieger, Inc. Children with Autism 

Insert offset folio 101 here 80405.101

lee, Brian Drexel University Early life environmental exposures and Basic & Clinical 3 2/1/2012 1/31/2015 Not due yet 4/1/2015 

autism In an existing Swedish birth cohort 2011 

Patterson, Paul California Institute of The Mechanism of the Maternal Infection Basic & Clinical 3 2/1/2012 1/31/2015 Not due yet 4/1/2015 

Technology Risk Factor for Autism 2011 

Sahin, Mustafa Chlldrens Hospital A Cerebellar Mutant for Investigating Basic & Clinical 3 2/1/2012 1/31/2015 Not due yet 4/1/2015 

Boston Mechanisms of Autism In Tuberous 2011 

Sclerosis 

Young, Larry Emory University Novel approaches to enhance social Basic & Clinical 3 2/1/2012 1/31/2015 Not due yet 4/1/2015 

cognition by stimulating central oxytocin 2011 

release. 

Goldman, Vanderbilt University Characterization of the Sleep Phenotype Basic & Clinical 3 3/1/2012 2/28/2015 Not due yet 4/30/2015 

Suzanne In Adolescents and Adults with Autism 2011 

Spectrum Disorder 

Gardner, Judith Institute for Basic Very early behavioral Indicators of ASD Basic & Clinical 3 3/1/2012 2/28/2015 Not due yet 5/1/2015 

Research In risk among NICU Infants: A prospective 2011 

Developmental study Disabilities 

Katz, David Case Western Reserve TrkB agonist therapy for sensorimotor Basic & Clinlcal- 3 3/1/2012 2/28/2015 Not due yet 5/1/2015 

University dysfunction in Rett syndrome 2011 

Seltzer, Marsha Waisman Center Quality of Ufe During Midlife In Adults Bask & Clinkal 3 3/1/2012 2/28/2015 Not due yet 5/1/2015 

withASD 2011 

Simonoff, Emily Institute of Psychiatry, Why Do People with Autism Spectrum Basic & Clinical 3 4/1/2012 3/31/2015 Not due yet 6/1/2015 

Kings College London Disorders Fare So Differently in Adult Life? 2011 

Zwaigenbaum, University of Alberta Genomic Influences on Developmental Basic & Clinlcal- 3 5/1/2012 4/30/2015 Not due yet 7/1/2015 

lonnie Course and Outcome In Infants at Risk of 2011 

ASD: A 8SRC Study 

Bolton, Patrick institute of Psychiatry, Autism Phenotypes in Tuberous Sclerosis: Basic & Clinical- 3 6/1/2012 5/31/2015 Not due yet 7/31/2015 

Kings College London Risk Factors, Features & Architecture 2011 

Mandell, David University of Estimating the Economic Costs of Autism Cost of Autism 2 10/15/2011 4/15/2012 Overdue 6/15/2012 

Pennsylvania 2011 

Knapp, Martin london School of Estimating the Economic Costs of Autism Cost of Autism - 1 10/1/2011 3/31/2013 Not due yet 5/31/2013 

Economics 2011 

Noble, Mark University of Rochester Vulnerabillty phenotypes and Environmental- 3 10/1/2008 3/30/2012 Overdue 5/30/2012 

susceptibility to environmental toxicants: 2008 

from organism to mechanism 

Insert offset folio 102 here 80405.102

Ponzio, Nicholas University of Medicine Influence of maternal cytokines during Environmental 3 4/1/2009 10/1/2012 Not due yet 12/1/2012 

and Dentistry pregnancy on effector and regulatory T 2008 

helper cells as etiological factors in autism 

Patel, Vikram Sangath Centre ARTI: The Autism Research & Training Epidemiology 3 1/1/2009 7/31/2012 Not due yet 10/1/2012 

Initiative in India 2008 

Gross, Ra:z Sheba Medical Center Analyses Israel Epidemiology 4 5/1/2009 4/30/2013 Not due yet 7/1/2013 

2008 

Pamer, Erik University of Aarhus Analyses Denmark Epidemiology . 4 5/1/2009 4/30/2013 Not due yet 7/1/2013 

2008 

SOurander, Turku University Multi-Registry Analyses - Finland Epidemiology 4 5/1/2009 4/30/2013 Not due yet 7/1/2013 

Andre 2008 

Stoltenberg, Norwegian Institute of Multi-Registry Analyses - Norway Epidemiology 4 5/1/2009 4/30/2013 Not due yet 7/1/2013 

Camlila Public Health 2008 

Bresnahan, Columbia University Multi-Registry Analyses - Data Mgt Core Epidemiology - 4 5/1/2009 5/31/2013 Not due yet 7/31/2013 Michaeline 2008 Hultman, Karolinska Institutet Multi-Registry Analyses Sweden Epidemiology 4 5/1/2009 5/31/2013 Not due yet 7/31/2013 

Christina 2008 

leonard, Helen University of Western Multi-Registry Analyses Western Epidemiology 4 5/112009 5/3112013 Not due yet 7/31/2013 

Australia Australia 2008 

Kauchali, Shuaib University of KwaZulu- KZN Autism Study Epidemiology . 3 9/1/2010 8/30/2013 Not due yet 11/1/2013 

Natal 2008 

Hepburn, Susan University of Colorado Improving Educational Identification in GAPH - 2011 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

Denver Rural Communities 

lee, lI-Chlng Johns Hopkins Comprehensive Parent-Mediated GAPH -2011 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

University Intervention for Children with Autism in 

Southern Taiwan 

Fein, Deborah University of Screening, Diagnosis and Parent Training GAPH -2011 2 4/1/2012 3/31/2014 Not due yet 6/30/2014 

Connecticut for Young Children with ASD in Albania 

Hoekstra, Rosa The Open University Increasing autism awareness in Ethiopia: GAPH -2011 2 5/1/2012 4/30/2014 Not due yet 7/1/2014 

The HEAT+ project 

Rahman, AUf University of liverpool PASS: Parent-mediated intervention for GAPH -2011 2 5/1/2012 4/30/2014 Not due yet 7/1/2014 

autism spectrum disorders (ASD) In South 

Asia 

Kasari, Connie University of California, Developmental and Augmented High Risk High 3 1/1/2009 7/31/2012 Not due yet 10/1/2012 

los Angeles Intervention for Facilitating Expressive Impact 4 2008 

Language 

I 

_______ , 

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Insert offset folio 103 here 80405.103

Piven, Joseph University of North IBIS-EARll Collaboration Miscellaneous 3 1/1/2009 7/31/2012 pending 10/112012 

Carolina Grants - 2008 update 

Newschaffer, Drexel University IBIS-EARll Collaboration Miscellaneous 3 1/1/2009 7/31/2012 year 3 10/1/2012 

Craig Grants 2008 "NeE" 

submitted 

Paylor, Rich Baylor College of Behavioral Evaluation of Rat Knockout Miscellaneous 1 3/1/2011 8/31/2012 Not due yet 10/31/2012 

Medicine Models of ASD Grants 2010 

Young, Gregory University of California, A Centralized Standard Database for the Miscellaneous 2 12/31/2010 12/30/2012 Not due yet 2/28/2013 

Davis Baby Siblings Research Consortium Grants - 2010 

Rogers, Sally University of California, Meta Analysis - TIN Miscellaneous 1 3/1/2011 2/28/2013 Not due yet 4/28/2013 

Davis Grants - 2010 

law, Paul Hugo W, Moser AsseSSing the accuracy of rapid Miscellaneous 1 7/1/2011 6/30/2012 Not due yet 9/1/2012 

Research at Kennedy phenotyping of nonverbal autistic children Grants 2011 

Krieger, Inc, 

Weiss, Patrice University of Haifa Applying Participatory Design to Develop Miscellaneous 1 8/1/2011 7/31/2012 Not due yet 10/1/2012 

(Tamar) Technology (ITA Course) Grants - 2011 

Anagnostou, Holland Bloorview Kids A Miscellaneous 2 9/1/2011 8/30/2013 Not due yet 9/1/2013 

Evdokia Rehabilitation Hospital controlled trial of memantlne vs, placebo Grants· 2011 

In children with autism 

Croen, Usa Kaiser Permanente Prevalence and patterns of medical co- Miscellaneous 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

DiviSion of Research morbidity and healthcare use before ASO Grants 2011 

diagnoses in children 

Odom, Samuel University of North Early Intervention Professional Miscellaneous 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

Carolina Development: Evidenced-based practices Grants - 2011 

and Program Quality 

Walker, Cheryl University of California, Gestational Exposure Questionnaire Miscellaneous 2 2/1/2012 5/31/2015 Not due yet 4/1/2014 

Davis Validation and Feasibility Study Grants - 2011 

Volk, Heather University of Southern Perinatal Exposure to Airborne Pollutants Miscellaneous 3 2/1/2012 1/31/2015 Not due yet 4/1/2015 

California and Associations with Autism Phenotype Grants - 2011 

Rogers, Sally University of California, Strengthening the effects of parent- Miscellaneous 3 4/1/2012 3/31/2015 Not due yet 6/1/2015 

Davis Implemented early intervention to Grants 2011 

improve symptoms of ASD 

Estes, Annette University of Strengthening the effects of Miscellaneous 3 6/1/2012 5/31/2015 Not due yet 6/1/2015 

Washington implemented early intervention to Grants - 2011 

improve symptoms of ASD 

-

Insert offset folio 104 here 80405.104

Fombonne, Eric McGill University Epidemiological Study of Pervasive Pilot - 2010 2 6/1/2010 11/30/2012 Not due yet 1/30/2013 

Developmental Disorders in Mexico 

Akbarian, Brudnick Neuronal Epigenome Mapping in Autism Pilot· 2010 2 2/1/2011 1/31/2013 Not due yet 4/1/2013 

Schahram Neuropsychiatric 

Institute 

Anand, Rene The Ohio State Deficiency of Nicotinic Receptor-Neurexln Pilot - 2010 2 2/1/2011 3/31/2012 Not due yet 4/1/2013 

University Interactions in Autism 

Barth, Daniel University of Colorado, The role of neurolnflammation in ASD· Pilot - 2010 2 2/1/2011 1/31/2013 Not due yet 4/1/2013 

Boulder related behaviors, hyper·excitability and 

epilepsy 

Connelly. Jessica University of Virginia Epigenetlcs and the Oxytocin Pathway Pilot - 2010 2 2/1/2011 1/31/2013 Not due yet 4/1/2013 

Francesconi, Albert Einstein College Regulation of mGluR Signaling by lipid Pilot - 2010 2 2/1/2011 1/31/2013 Not due yet 4/1/2013 

Anna of Medicine of Yeshiva domains in Fragile X Syndrome 

University 

lUikart, Bryan Dartmouth College The Impact of Pten Dysfunction on Pilot - 2010 2 2/1/2011 1/31/2013 Not due yet 4/1/2013 

Neuronal Physiology 

Ordway, East Tennessee State Glia Pathology in Autism Pilot - 2010 2 2/1/2011 1/31/2013 Not due yet 4/1/2013 

Gregory University 

Shattuck, Paul Washington University Factors Related to Voung Adult Outcomes Pilot - 2010 2 2/1/2011 1/31/2013 Not due yet 4/1/2013 

In Autism Spectrum Disorders 

Sikich, Linmarie University of North 8"week placebo-controlled trial of Pilot - 2010 2 2/1/2011 1/31/2013 Not due yet 4/1/2013 

Carolina oxytocin for treatment of in children with 

autism 

Sonenberg, McGill University Regulation of neuronal translation In Pilot - 2010 2 2/1/2011 1/31/2013 Not due yet 4/1/2013 

Nahum Autism Spectrum Disorders 

Tayior, Julie Vanderbilt University Patterns and Environmental Predictors of Pilot - 2010 2 2/1/2011 1/31/2013 Not due yet 4/1/2013 

Employment and Independence among 

Adults with ASD 

Sambara, linda lehigh University Peer-mediated Social Skills Training for Pilot - 2010 2 3/1/2011 2/28/2013 Not due yet 5/1/2013 

High School Students with Autism 

Spectrum Disorders 

Farley, Megan University of Utah Functional Outcome Factors in Adults Pilot - 2010 2 3/1/2011 2/28/2013 Not due yet 5/1/2013 

with Autism Spectrum Disorders 

St Poureain, University of Bristol Genetic variation and gene-environment Pllot- 2010 2 12/1/2011 11/30/2013 Not due yet 2/1/2014 

Beate influences in autistic·!ike traits 

Insert offset folio 105 here 80405.105

Pessah, Isaac University of California, UC Davis Center for Children's Targeted Q1 2012 1 4/1/2012 3/31/2013 Not due yet 6/1/2013 

Davis Environmental Health {CCEH} Bridge 

leventhal, Nathan Kline Institute ASD Prevalence by DSM·1V and DSM·5: Targeted Q1· 2012 1 5/1/2012 4/30/2013 Not due yet 6/1/2013 

Bennett Total Population Study Paylor, Rich Baylor CoUege of Rat Knockout Models of ASD Targeted Q2 • 2012 1 9/1/2012 8/31/2013 Not due yet 11/1/2013 

Medicine 

Scherer, Hospital for Sick Examining the Y·Chromosome In Autism Targeted Q2. 2012 1 9/1/2012 8/31/2013 Not due yet 11/1/2013 Stephen Children Spectrum Disorder 

Buxbaum, Mount Sinai School of Identifying therapeutic Targeted Q2 - 2012 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Joseph Medicine targets for autism spectrum disorders 

using rat models 

Mandell, David University of increasing ASD screening and referral Targeted Q2 • 2012 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Pennsylvania among NYC's Korean Americans 

Carpenter, laura Medical University of South Carolina Children's Educational Targeted Q2 • 2012 3 9/1/2012 8/31/2015 Not due yet 11/1/2015 

South Carolina Surveillance Study: Comparison of 

& DSM-S Prevalence 

Schwartz, Philip Children's Hospital of An In Vivo, IPSC·Sased, Model of Autism Suzanne and Bob 1 4/1/2011 9/30/2012 Not due yet 11/30/2012 

Orange County Wright Trailblazer· 

2010 

Bassell, Gary Emory University PI3K/mTOR signaling as a novel biomarker Suzanne and Bob 1 5/1/2011 10/31/2012 Not due yet 12/31/2012 

and therapeutic target in autism Wright Trailblazer· 

2011 

Ashwood, Paul University of California, Defining the Underlying Biology of Suzanne and Bob 2 10/1/2011 9/30/2013 Not due yet 11/30/2013 

Davis Gastrointestinal Dysfunction in Autism Wright trailblazer • 

2011 

Atherton, Mark Brunei University Tuning Anxiety Out: Exploring the Suzanne and Bob 1 5/1/2012 4/30/2013 Not due yet 7/1/2013 

Potential of Noise Cancellation in ASD Wright Trailblazer· 

Sound Sensitivity 2012 

Palmer, University of Texas Environmental Exposures Measured In Suzanne and Bob 1 8/1/2012 7/31/2013 Not due yet 10/1/2013 Raymond Health Science Center, Deciduous Teeth of Children with Autism: Wright TrallblazerSan Antonio A Validation Study 2012 Bellnsan, Halm University of California, Pathologic and Genetic Characterization Translational 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

San Francisco of Novel Brain Cortical Patches in Young Postdoctoral 

Autistic Brains Fellowships· 2011 

Buard, Isabelle University of Colorado Multimodai neuroimaging of motor Translational 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

Denver dysfunction in autism spectrum disorders Postdoctoral 

Fellowships· 2011 

Inan, Melis Weill Medical College High metabolic demand of Translational 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

of Cornell University cortical interneurons underlying the Postdoctoral 

etiology of autism FellowshipS· 2011 

. 

Insert offset folio 106 here 80405.106

Keehn, Brandon Chlldrens Hospital Understanding the etiological significance Translational 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

Boston of attentional disengagement in infants Postdoctoral 

at-risk for ASD Fellowships 2011 

Knoll, Allison University of Southern Factors influencing early associative Translational 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

California learning as a precursor to social behavior Postdoctoral 

heterogeneity Fellowships 2011 

Naples, Adam Yale University Brain Electrophysiology of Interactive Translational 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

Social Stimuli Postdoctoral 

Fellowships 2011 

Peca, Joao Massachusetts Institute Neural circuits of social behavior: Translational 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

of Technology Rescuing autistic-like behaviors in Postdoctoral 

genetically manipulated mice Fellowships - 2011 

Penagarikano, University of California, Mechanism and treatment of ASD related Translational 2 2/1/2012 1/31/2014 Not due yet 4/1/2014 

Olga Los Angeles behavior In the Cntnap2 knockout mouse Postdoctoral 

model Fellowships 2011 

Puts, Nicolaas Johns Hopkins GABAerglc Dysfunction in Autism Translational 2 3/1/2012 2/28/2014 Not due yet 5/1/2014 

University Postdoctoral 

Fellowships 2011 

Jones, Rebecca Weill Medical College Behavioral and neural underpinnings of Translational 2 5/1/2012 4/30/2014 Not due yet 7/1/2014 

of Cornell University learning In autism predict response to Postdoctoral 

Intervention Fellowships 2011 

Campbell, Yale University Improved early detection of autism using Translational 2 7/1/2012 6/30/2014 Not due yet 9/1/2014 

Daniel novel statistical methodology Postdoctoral 

Fellowships 2011 

McCoy, Portia University of North Functional and anatomical recovery of Translational 2 8/9/2012 8/8/2014 Not due yet 10/9/2014 

Carolina synaptic deficits In a mouse model of Postdoctoral 

Ange!man Syndrome. Fellowships w 2011 

Anderson, Stanford University Role of CNTNAP2 In neuronal structural Translational 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Garret development and synaptic transmission Postdoctoral 

Fellowships· 2012 

Carson, Dean Stanford University Randomized controlled trial of oxytocin Translational 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

treatment for sodal deficits in children Postdoctoral 

with autism. Fellowships - 2012 

Eggebrecht, Washington University Mapping functional connectivity networks Translational 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Adam in Autism Spectrum Disorder with diffuse Postdoctoral 

optical tomography Fellowships 2012 

Nebel, Mary Hugo W, Moser Understanding the Brain Basis of Impaired Translational 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Beth Research at Kennedy Imitation learning in Autism Postdoctoral 

Krieger, Inc. Fellowships· 2012 

Insert offset folio 107 here 80405.107

Patl, Soumya Baylor College of Integrative System Biology of iPSC" Translational 2 9/l/2012 8/31/2014 Not due yet 11/1/2014 

Medicine induced Neurons for Identifying Novel Postdoctoral 

Drug Targets Fellowships" 2012 

Speed, Haley University of Texas Preclinical therapeutic target validation of Translational 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Southwestern Medical glutamate receptors In Shank3 models of Postdoctoral 

Center, Dallas autism. Fellowships" 2012 

Tenenbaum, Women & Infants Attention & Word Learning in Children Translational 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Elena Hospital with ASD· Translating Experimental Postdoctoral 

Findings into Intervention Fellowships" 2012 

Teng, Brian University of North Effects of Oxytocin Receptor Agonists In Translational 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Carolina Mouse Models of Autism Spectrum Postdoctoral 

Disorder Phenotypes Fellowships" 2012 

Tudusciuc, Oana California Institute of Single"unit recordings in neurosurgical Translational 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Technology patients with autism Postdoctoral 

Fellowships - 2012 

Vuen, Ryan Hospital for Sick Identifying Genetic Variants on the Y Translational 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Children Chromosome of Males with Autism Postdoctoral 

Fellowships - 2012 

Tierney, Elaine Hugo W, Moser Double Masked Placebo Controlled Trial Treatment M 2008 3 12/1/2008 5/30/2012 Due now 7/30/2012 

Research at Kennedy of Cholesterol in Hypocholesterolemic 

Krieger, Inc, ASD 

Schaaf, Roseann Thomas lefferson Effectiveness of sensory based strategies Treatment 2008 3 10/1/2008 5/31/2012 Duenow 7/31/2012 

University for improving adaptive behaviors in 

children with autism 

Hardan, Antonio Stanford University Pivotal Response Group Treatment for Treatment - 2010 2 6/1/2010 5/31/2012 Partially 8/1/2012 

Parents of Young Children with Autism submitted 

DeThorne, laura University of illinois, Making Words Meet: Using Computerized Treatment" 2010 2 6/1/2010 11/30/2012 Not due yet 1/30/2013 

Feedback to Facilitate Word Combinations 

in ChHdren with ASO 

Lord, Catherine Weill Medical College Early intervention in an Underserved Treatment - 2010 3 6/1/2010 5/31/2013 Not due yet 8/1/2013 

of Cornell University Population 

McDougle, Massachusetts General Mlrtazapine Treatment of Anxiety In Treatment 2010 3 6/1/2010 5/31/2013 Not due yet 8/1/2013 

Christopher Hospital Children and Adolescents with Pervasive 

Developmental Disorders 

Kaufmann, Chlldrens Hospital Pharmacological Treatment of Rett Treatment· 2010 2 6/1/2011 5/31/2013 Not due yet 8/1/2013 

Walter Boston Syndrome by Stimulation of Synaptic 

Maturation with lGF"l 

--_.- -----

Insert offset folio 108 here 80405.108

Minshew, Nancy University of Pittsburgh Evidence-Based Cognitive Rehabilitation Treatment 2010 3 8/1/2010 7/31/2013 Not due yet 10/1/2013 

to Improve Functional Outcomes for 

Young Adults with Autism-Spectrum 

Disorders 

Sahln, Mustafa ChHdrens Hospital Randomized Phase 2 Trial of RAOOOl (An Treatment 2010 3 11/1/2010 10/30/2013 Not due yet 1/1/2014 

Boston MTOR Inhibitor) in Patients With 

Tuberous Sclerosis Complex 

Brady, Nancy University of Kansas Transitions from Augmentative or Treatment 2011 1 12/1/2011 11/30/2012 Not due yet 2/1/2013 

Alternative Communication (AAe) to 

Speech: A Pilot Investigation 

Galanopoulou, Aibert Einstein College The role of mTOR inhibitors in the Treatment - 2011 2 12/1/2011 11/30/2013 Not due yet 2/1/2014 

Arlstea of Medicine of Yeshiva treatment of autistic symptoms In 

University symptomatic Infantile spasms 

Ingersoll, Michigan State Effectiveness of Reciprocal Imitation Treatment 2011 2 12/1/2011 11/30/2013 Not due yet 2/1/2014 

Brooke University Training for Adolescents with lowFunctioning Autism 

Laudenslager, University of Colorado Salivary Melatonin as a Biomarker for Treatment 2011 2 12/1/2011 11/30/2013 Not due yet 2/1/2014 

Mark Denver Response to Sleep Interventions in 

Chlldren with Autism 

Morgan, Undee Florida State University Social-Pragmatic Treatment for Adults Treatment 2011 2 12/1/2011 11/30/2013 Not due yet 2/1/2014 

with Autism Spectrum Disorder: The 

Interview Skills Curriculum 

Nicholas, David UniverSity of Calgary Examining Vocational Services for Adults Treatment 2011 2 12/1/2011 11/30/2013 Not due yet 2/1/2014 

with Autism 

Schlaug, Beth Israel Deaconess Comparing AMMT vs. Control Therapy in Treatment - 2011 2 12/1/2011 11/30/2013 Not due yet 2/1/2014 

Gottfried Medical Center facilitating speech output In nonverbal 

children with autism 

Smith, leann Waisman Center Transltloning Together: An Intervention Treatment - 2011 2 12/1/2011 11/30/2013 Not due yet 2/1/2014 

Program for Adolescents with ASD and 

their Families 

Kasari, Connie University of California, Deployment Focused Model of JASPER for Treatment - 2011 3 12/1/2011 11/30/2014 Not due yet 2/1/2015 

los Angeles Preschoolers with Autism Spectrum 

Disorders 

Wood, Jeffrey University of California, Cognitive Behavioral Therapy for Core Treatment 2011 3 12/1/2011 11/30/2014 Not due yet 2/1/2015 

los Angeles Autism Symptoms in Children 

Foss-Feig, Vanderbilt University Neural mechanisms underlying an Weatherstone 2 12/31/2009 6/30/2012 Not due yet 8/30/2012 

Jennifer extended multisensory temporal binding Fellowships 2009 

window in ASD 

Insert offset folio 109 here 80405.109

Ash, Ryan Baylor College of In-vivo imaging of neuronal structure and Weatherstone 2 11/1/2010 10/31/2012 Not due yet 1/1/2013 

Medicine function in a reversible mouse model for Fellowships 2010 

autism. 

Berko, Esther Albert Einstein College Advanced Parental Age and Autism: The Weatherstone 2 11/1/2010 10/31/2012 Not due yet 1/1/2013 

of Medicine of Yeshiva role of aneuploidy and uniparental disomy Fellowships - 2010 

University In ASO pathogenesis 

Kouser, University of Texas Shank3 mutant characterization In vIvo Weatherstone 2 11/1/2010 10/31/2012 Not due yet 1/1/2013 

Mehreen Southwestern Medical Fellowships 2010 

Center, Dallas 

Patterson, University of California, A Novel Parent Directed Intervention to Weatherstone 2 11/1/2010 10/31/2012 Not due yet 1/1/2013 

Stephanie los Angeles Enhance Language Development In Fellowships - 2010 

Nonverbal Children with ASD 

Radoeva, Petya State University of New Social Cognition in 22qll.2 OS Weatherstone 2 11/1/2010 10/31/2012 Not due yet 1/1/2013 

York, Upstate Medical Adolescents with ASD VS. without ASO: fellowshipS' 2010 

University Imaging and Genetic Correlates 

Seery, Anne Boston University Neurophysiological investigation of Weatherstone 2 11/1/2010 10/31/2012 Not due yet 1/1/2013 

language acquisition In infants at risk for Fellowships - 2010 

A5D 

Stadnick, Nicole University of California, The Effectiveness of an Evidence-Based Weatherstone 2 11/1/2010 10/31/2012 Not due yet 1/1/2013 

San Diego Parent Training Intervention in a Fellowships 2010 

Community Service Setting 

Hus Bal, Vanessa University of Michigan Development and refinement of Weatherstone 2 12/31/2010 12/30/2012 Not due yet 2/28/2013 

diagnostic instruments for use with adults Fellowships - 2010 

withASD 

Haworth, Joshua University of Nebraska, Perception and production of complex Weatherstone 2 1/1/2011 12/31/2012 Not due yet 3/1/2013 

Omaha movement variability in children with Fellowships 2010 

autism 

Damiano, Cara University of North Behavioral and Neural Correlates of Weatherstone 2 9/1/2011 8/31/2013 Not due yet 11/1/2013 

Carolina Reward Motivation In Children with Fellowships - 2011 

Autism Spectrum Disorders 

Fllllter, Jillian Dalhousie University Preference Acquisition In Children and Weatherstone 2 9/1/2011 9/5/2013 Not due yet 11/1/2013 

Adolescents with and wIthout Autism Fellowships 2011 

Spectrum Oisorder 

Johnston, Sean University of Macrocephalic Autism: Exploring and Weatherstone 2 9/1/2011 8/31/2013 Not due yet 11/1/2013 

Wisconsin-Madison Exploiting the Role of PTEN Fellowships 2011 

luo, Ru! University of California, Genome-wide expression profUing data Weatherstone 2 9/1/2011 8/31/2013 Not due yet 11/1/2013 

Los Angeles analysis to study autism genetic models Fellowships 2011 

---- -- ---- '--

Insert offset folio 110 here 80405.110

Martinez- University of Dissemination of multi-stage screening to Weatherstone 2 9/1/2011 8/31/2013 Not due yet 11/1/2013 

Pedraza, Massachusetts, Boston underserved culturally-diverse families Fellowships - 2011 Frances 

Nazor, The Scripps Research A Stem Cell Based Platform for Weatherstone 2 9/1/2011 8/31/2013 Not due yet 11/1/2013 

Kristopher Institute, CA Identification of Common Defects in Fellowships - 2011 

Autism Spectrum Disorders 

Oksenberg, Nir University of California, Deciphering the function and regulation Weatherstone 2 9/1/2011 8/31/2013 Not due yet 11/1/2013 

San Francisco of AUTS2 Fellowships - 2011 

Wainer, Allison Michigan State USing an internet-based program to teach Weatherstone 2 9/1/2011 8/31/2013 Not due yet 11/1/2013 

Un!versity a naturalistic intervention to parents of Fellowships· 2011 

children with ASD 

Danial, John University of California, Anxiety Treatment for Children with Weatherstone 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

los Angeles Autism and Intellectual Disability Fellowships - 2012 

Edwards, laura Harvard University Neural Correlates of Imitation in Children Weatherstone 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

with Autism and their Unaffected Siblings Fellowships 2012 

Estes, Myka University of California, Il-lbeta and !llRAPl1: Gene- Weatherstone 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Davis environment interactions regulating Fellowships· 2012 

synapse density and function In ASD 

Grubb, Michael New York Universlty Spatial Attention in Autism Spectrum Weatherstone 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Disorders Fellowships· 2012 

McEvoy, Kevin University of California, Electrophysiologlc Biomarkers of Weatherstone 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

los Angeles language Function in Autlsm Spectrum Fellowships· 2012 

Disorders 

Muller, Vanderbilt University Evaluating Hyperserotonemia as a Weatherstone 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Christopher Biomarker of Sensory Dysfunction in Fellowships 2012 

Autism Spectrum Disorder 

Nalr,Aartl San Diego State Thalamocortical Connectivity in Children Weatherstone 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

University and Adolescents with Combined Fellowships· 2012 

fcMRI and OTI approach. 

Stavropoulos, University of California, Stimulus Preceding Negativity and SOCial Weatherstone 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

Katherine San Diego Stimuli in Autism Spectrum Disorder Fellowships· 2012 

Turner, Tychele Johns Hopkins Why are autistic females rare and severe? Weatherstone 2 9/1/2012 8/31/2014 Not due yet 11/1/2014 

University An approach to autism gene Fellowships - 2012 

identification, 
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NICHD Director Guttmacher Questions for the Record 

House Committee on Oversight and Government Reform 

November 29, 2012 

The.Honorable Bill Posey 

Question 1. In 2001, Dr. Marie Bristol-Power then a Special Assistant for Autism, in the 

Office of the Director at the NICHD provided a summary of autism 

(http://www.nichd.nih.gov/autism/presentations/etiology.1.cfm) in which she stated: 

Autism-No single cause; no single cure - Autism is likely the result of a variety of factors, 

such as: Genetic, Infectious, Neurologic, Metabolic, Immunologic, and Environmental. Has 

NICHD given equal treatment, and equal funding to looking at these six identified groups 

offactors? 

Answer: Intellectual and developmental disabilities, including Autism Spectrum 

Disorders (AS D), are a primary focus of the NICHD's research support. The Institute's portfolio 

covers a balanced range of topics in autism, including the causes of ASD, epidemiology, 

treatment, and screening. The Institute also supports professional training and the development 

of research infrastructure that will facilitate research in ASD across the country.' In addition, as 

a founding member of the NIH internal Autism Coordinating Cormnittee, the NICHD works in 

close conjunction with other Institutes and Centers at the NIH, each focusing on its particular 

area of expertise. 

The most recent analysis of the distribution of autism research across both Federal and private 

funders and across types of research is reported in the 2010 IACC Autism Spectrum Disorder 

Research Portfolio Analysis Report? By using the "IACC Autism Spectrum Disorder Research 

Portfolio Analysis Web Tool,,,3 the reader can see the projects that were funded by all funders, 

including NIH. 

Question 2. I understand that Dr. Bristol-Power has retired. Do you also have a Special 

Assistant for Autism as the NICHD Director? (If so, what is that person's name?) If not, 

why not? And is autism the only issue that this person is responsible for, or are they 

juggling a number of issues? 

Answer: Dr. Bristol-Power retired from Federal service approximately 10 years ago. Since I 

became Director of the NICHD three years ago, NICHD has phased out the "special assistant" 

role for specific scientific areas; scientific program staff, and the research portfolios they 

manage, benefit from greater collaboration (such as other developmental disabilities), and are 

grouped together in extramural research branches within the Institute. 

I A more detailed description of the NICHD's activities is available at http://www.nichd.nih.gov/health/topics/ 

autismlrescarchinfoIPageslactivities.aspx. 

2 http://iacc.hhs.govlportfolio-analysisI20IOlindex.shtmL 

J https:lliacc.hhs.gov/appslportfolio-analysis-web-toollprojects. 

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Alice Kau, Ph.D., joined the Intellectual and Developmental Disabilities Branch at the NICHD in 

2003. She is responsible for the Branch's Biobehavioral Research Program with primary 

emphasis on ASD, and leads the Institute's trans-NIH autism activities. Prior to coming to the 

NICHD, Dr. Kau was an assistant professor at the Kennedy Krieger Institute, Johns Hopkins 

University. 

Question 3. In the hierarchy of science, when looking at drug safety, or environmental 

exposures, what carries more weight, research in animals such as primates and mice, or 

retrospective review of medical files? 

Answer: Both. There is no universal hierarchy of scientific methodology. All types of effective 

research are important to answering scientific questions such as those about drug safety. The 

majority of NIH grants are awarded to investigators across the country whose applications have 

been evaluated by peer review groups on merit, and are deemed most able to take advantage of 

scientific opportunities, fill in research gaps, and meet public health needs. Part of the role of 

peer reviewers is to judge whether the research team for a specific project is proposing to use 

available scientific methods and tools that best fit the needs of the research project. 

Question 4. Do you see autism only as a behavioral condition? Or do you see it as a whole 

body medical condition? 

Answer: Autism certainly affects both behavior and many parts of the body. Currently, the 

diagnosis of autism is made through observation of behavior, specifically, by evidence of certain 

social and communicative behaviors. Recent research has revealed more about the biological 

differences, such as differences in brain structure, activity, and connectivity that may underlie 

some of these behavioral symptoms. There is also evidence that individuals with autism, as a 

group, have a higher rate of a range of medical disorders and symptoms. However, the types of 

medical conditions vary and many individuals with autism have no more medical issues than is 

expected in the general population. More research is needed to determine the significance of the 

apparent increased risk for medical conditions in those with autism spectrum disorders. The NIH 

funded a two-year called "Study of Health Outcomes in Children with Autism and Their 

Families." This study will use a large database of commercial insurance claims data to describe 

the physical health conditions and health care utilization of children with ASD, their family 

members, as compared with a sample of children without ASD and their family members. 

Results are expected in the spring of2013. 

Question 5. To date, neither the CDC or the NIH has conducted a retroactive study 

examining health outcomes - particularly neurodevelopmental disorders or autism -

examining vaccinated vs. unvaccinated children in the United States. There are databases, 

including the Vaccine Safety Datalink and state databases where this information in 

readily available. Why has such a study not been conducted by the NIH? What specific 

objections does the NIH have to the conduct of such a study? What if any specific value do 

you believe such a study would provide? 

Answer: The NIH and CDC held a workshop in 2006 to explore whether the Vaccine Safety 

Datalink (VSD) could be used to perform a scientifically valid study of the relationship between 

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thimerosal and autism. The report (attached) resulting from that workshop "reached consensus 

that an analysis comparing the rates of autistic disorder (AD)lASD in the VSD over the time 

period before, during, and after the removal of thimersol from most childhood vaccines would be 

uninformative and potentially misleading." Moreover, a 2004 study by the Institute of Medicine, 

Immunization Safety Review: Vaccines and Autism (May 14, 2004; available at: 

htlp:llwww.iom.eduIReports/20041Immunizalion-Sa[ery-Review-Vaccines-and-Autism.aspx. 

made the following definitive conclusions: "The committee concludes that the body of 

epidemiological evidence favors rejection of a causal relationship between the MMR vaccine and 

autism. The committee also concludes that the body of epidemiological evidence favors rejection 

of a causal relationship between thimerosal-containing vaccines and autism. The committee 

further finds that potential biological mechanisms for vaccine-induced autism that have been 

generated to date are theoretical only." 

Conducting a prospective clinical trial comparing autism rates in vaccinated vs. unvaccinated 

children is unethical, as vaccination has known health benefits in preventing many childhood 

illnesses. Relying on a retrospective comparison of autism rates in vaccinated vs. unvaccinated 

children is also problematic because families that choose not to vaccinate their children are likely 

to differ in many ways from families who do vaccinate and these differences may themselves be 

related to autism risk. Controlling for these and other confounds is particularly difficult in 

retrospective studies. 

The Institute of Medicine (lOM) is currently conducting an Assessment of Studies of Health 

Outcomes Related to the Recommended Childhood Immunization Schedule. The study is 

sponsored by the National Vaccine Program Office at HHS. This is an independent assessment 

surrounding the feasibility of studying health outcomes in children who were vaccinated 

according to the CDC recommended schedule and those who were not (e.g. children who were 

unvaccinated or vaccinated with an alternate schedule). The 10M will review scientific findings 

and stakeholder concerns related to the safety of the recommended childhood immunization 

schedule. Further, the 10M will identify potential research approaches, methodologies, and 

study designs that could inform this question, including an assessment of the potential strengths 

and limitations of each approach, methodology and design, as well as the financial and ethical 

feasibility of doing them. A report will be issued soon summarizing the 10M's findings and 

conclusions. 

The NIH-funded "Study of Health Outcomes in Children with Autism and Their Families" 

(described above in response to Q4) will also evaluate the feasibility of using large databases of 

insurance claims to evaluate a range of risk factors for autism. 

Question 6. Do you think that the National Institute of Mental Health should be overseeing 

autism, or do you believe it belongs in a different institute - such as NICHD? Why? 

Answer: The National Institute of Mental Health (NIMH) has the largest portfolio of autism 

research at NIH, and has effectively chaired the Interagency Autism Coordinating Committee 

(lACC) since it was created in Public Law 106·310, the Children's Health Act of 2000. In that 

law, the IACC was established to "coordinate all efforts within the Department of Health and 

Human Services concerning autism." The Secretary ofDHHS delegated the authority to 

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administer the IACC to the Director of NIH, who re-delegated the authority to the Director of 

NIMH where it has remained. In its provision amending Sec. 409C of the Public Health Service 

Act, the Children's Health Act also required that the Director of NIH ("the Director") expand, 

intensify, and coordinate the activities of NIH with respect to research on autism. Further, the 

law specified that "The Director shall carry out this section acting through the Director of the 

National Institute of Mental Health and in collaboration with any other agencies that the Director 

deems appropriate." The Directors of four other NIH institutes, the National Institute of Child 

Health and Human Development, the National Institute of Neurological Disorders and Stroke, 

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

Institute of Environmental Health Sciences, are also members of the IACC. In addition, the NIH 

Director is a member, and when he cannot attend, the Director of the National Center for 

Complementary and Alternative Medicine attends in his place. 

Question 7. What therapies for autism has the NICHD evaluated and confirmed are 

beneficial? Are you aware if all of these therapies now available through fedcral and 

private insurance programs? If not, how can parents with limited resources obtained 

access? 

Answer: The NICHD's Intellectual and Developmental Disabilities Branch sponsors extramural 

research on the development of therapies and treatments for ASD, ASD symptoms, and autismrelated disorders, as well as the long-term effects of autism interventions. Potential treatment 

targets include self-injurious and repetitive behaviors, attention issues, language, irritability, and 

anxiety, co-morbidities such as gastrointestinal problems, and practical life-skills. NICHDfunded research includes projects on a range of interventions, from behavioral to pharmaceutical 

treatments. Current projects include testing a relationship-focused intervention with young 

children, the development of face processing expertise, and improving functional money skills, 

among many others. Several institutes at NIH support interventions for ASD.4 

In addition, a range of interventions for children, adolescents, and young adults recently have 

been evaluated by the Federal Agency for Healtheare Research and Quality, whose mission is to 

improve the quality, safety, efficiency, and effectiveness of health care in the U.S. These 

reviews examine the effects of available interventions on individuals with ASD and their 

families. Many of the interventions assessed in these reviews were studies funded by the NIH5 

NIH carmot answer the remaining questions under Q7, because it covers issues not within NIH's 

area of expertise. 

Question 8. In 2008 - nearly four years ago - the CDC published a study demonstrating 

that the rate of autism was much higher than previously believed. Yet, the amount of 

funding that NIH spends on autism research has remained relatively static - a small 

4 For a list of currently-funded NIH projects related to autism, see http://report.nih.gov/categorical spending 

project listing.aspx?FY=2011&ARRA=N&DCat=Autism. 

5 See, Therapies for Children with Autism Spectrum Disorders, at http://www.effectivehealthcare.ahrq.gov/ searchfor-guides-reviews-and-reports/?pageaction=displayproduct&productid=651, and Interventions for Adolescents and 

young Adults with Autism Spectrum Disorders, at http://www.effectivehealthcare.ahrq.gov/search-for-guidesreviews-and-reports/?pageaction=displayproduct& productid= 1197. 

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increase - but nothing as dramatic as would be expected by the public with the new 

findings. While many federal budgets have been relatively flat, why has the NIH not 

reallocated funding more rapidly within the NIH to dedicated the needed resources to focus 

on the devastating and rapidly increasing epidemic of autism, particularly among boys for 

which the autism rate is about 1 in 55? Specifically, what does NIH plan to spend on 

autism research in each of the next five years? If NIH is not planning to dedicate 

significantly more resources to autism, please provide the committee with an explanation as 

to why NIH does not see this as a priority. 

Answer: Autism research is a very high priority at NIH, as evidenced by the rapid increase in 

autism funding from $22 million in FY 1997 to $118 million in FY 2008 to $169 million in 

FY 2011. Several Funding Opportunity Announcements are currently posted to describe NIH 

priorities with regard to autism research and solicit grant applications from the scientific 

community. In addition, special requests for applications to compete for set-aside funds are 

frequently posted. 

One of these programs is the Autism Centers of Excellence (ACE) program. The ACE program 

is comprised of (a) three centers, focusing research on possible causes of ASD, risk and 

resilience in ASD, and children with ASD who have limited speech and communication and (b) 

six networks focusing on causes, preventive interventions, and improved treatment, as well ASD 

among females and how genetic and environmental factors are associated with the development 

of ASD. Contingent on the availability offunds, two additional ACE programs are planned to be 

awarded in FY 2013. 

ARRA funds in 2009 provided NIH with a unique opportunity to boost the funding for autism 

research. In spring 2009, NIH issued a Request for Applications (RF A), "Research to Address 

the Heterogeneity of Autism Spectnun Disorders", to solicit research proposals for potential 

funding under ARRA. NIH also supported ASD research with ARRA funding through the 

Challenge Grants in Health and Science Research and the Grand Opportunities grants. In 

September 2009, NIH awarded more than 50 autism research grants totaling more than 

$64 million, in addition to the $132 million awarded to autism researchers through NIH's regular 

base funding. In FY 2010, NIH committed an additional $58 million of ARRA funds to support 

new autism research, with the ARRA total for both fiscal years amounting to $122 million. In 

addition, regular NIH base funding for autism research in FY 2010 grew to $160 million. 

Under the President's Budget request for FY 2013, NIH had estimated that autism research 

would be funded at $170 million. The NIH recognizes the urgent need and autism research will 

continue to be a high priority. 

Question 9. The CDC prevalence studies show a 78% increase in autism rates. If the same 

increase trends for the 2000 birth cohort continue, the growth rate will go from 1 in 88 to 1 

in 22 for children born this year. How is anything NICHD and the NIH done in the last 

decade going to change the escalation of the autism epidemic? 

Answer: It is important to note that the CDC prevalence rates reflect a change in the number of 

autism diagnoses, not the actual number of people affected. NIH-supported research 

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demonstrates that nearly 50 percent of the increase in prevalence can be attributed to better 

ascertainment, changing diagnostic criteria, and better services. An actual increase seems 

probable, but we cannot say accurately how many more people are affected each year. To 

understand the cause of autism, science has to be conducted on many fronts. We now have a 

much better understanding than we did 10 years ago of the heterogeneity of ASD, the emergence 

of symptoms and different developmental trajectories that children with ASD may take, the cooccurring behavioral and health conditions, and the biology underlying the disorder. 

Recent findings on genomic factors associated with autism shed new light on risk for ASD. It 

has been demonstrated that there are as many as 1,000 rare changes in DNA structure for DNA 

sequences that contribute to ASD risk. These changes are frequently spontaneous; that is, they 

are not inherited from parents in the way that we usually think of genetic inheritance. It is 

possible, though, that the mutations could be found in the father's sperm cells, which continue to 

divide throughout life. Most of the genetic findings that have been discovered confer risk for a 

range of brain disorders, and are not specific to ASD. Research into the function of the 

implicated genes has begun to point to a few common biological pathways, particularly those 

that stabilize activity between neurons in the brain. These pathways are now the target for 

research to understand the causes of ASD, and ultimately to identify preventive measures and 

potential treatments. 

Given the complexity of autism risk, there is an increasing focus on research that examines the 

interface between environmental factors and genetic susceptibility. A list of candidate 

environmental exposures identified for future study was developed in a workshop of experts 

supported by the NIEHS and Autism Speaks. The list of candidates for future study, just 

published in 2012, included: lead, methylmercury, polychlorinated biphenyls, organophosphate, 

pyrethroid, organochlorine insecticides, endocrine disruptors, automotive exhaust, polycyclic 

aromatic hydrocarbons, brominated flame retardants, and perfluorinated compounds. These 

compounds are widely distributed within the environment and have known neurodevelopmental 

effects that may be relevant to autism. More research is planned to identify and explore the 

possible effects of these environmental exposures. In addition, the NIH- funded National 

Children's Study is expected to allow us to examine a combination of bios am pies (taken in 

pregnancy and early in life), and environmental exposures, and to look at the possible causes of a 

wide range of health and disease. Ifwe are successful in recruiting our goal of 100,000 children 

into the study, one thousand to several thousand of them are likely to have ASD, and provide us 

with unique insight into possible origins of these disorders. 

In terms of more immediately applicable research, over the last decade, the NIH has supported 

research activities on screening, diagnosis, and treatment. With recent advances, diagnosis by 

age 14 months is now a realistic possibility, and researchers are actively pushing the detection 

window to even younger ages. For example, in April 2011, NIH-funded researchers 

demonstrated that a simple, low-cost, practical screening tool involving a checklist that takes 

only five minutes for a parent to complete in doctors' offices can be used to detect ASD during a 

child's one-year well-baby check-up. The checklist includes questions about the child's 

emotions, eye gaze, communication, gestures, and other behaviors. Of course, early diagnosis is 

only valuable if effective interventions are available. Recently published results from several 

successful trials of early interventions have validated approaches that are effective in young 

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children, creating real promise of improved health outcomes and quality of life for children with 

ASD. 

NIH established an intramural research program to accelerate development and testing of 

innovative treatments for ASD. This program has studied hundreds of children including a 

cohort of young children with autism followed longitudinally in a natural history protocoL The 

most promising of these thus far appears to be donepezil, chosen in response to finding reduced 

REM sleep in children with autism in the natural history protocol. An open-label trial of 

donepezil resulted in enhancement of REM sleep in young children with autism; thus a 

randomized controlled study using donepezil to target symptoms of ASD is currently in 

development. 

Recently, NIH launched the Fast-Fail Trials in Autism Spectrum Orders (FAST-AS) initiative. 

This initiative's goal is to implement an experimental medicine paradigm of "fast fail" Proof of 

Clinical Mechanism (POCM) and Proof of Concept (POC) trials in order to quickly test and 

analyze novel interventions (i.e., compounds) and their molecular and/or clinical targets for 

treating clinical dimensions of psychopathology associated with ASD. 

Question 10. In addition to the Interagency Autism Coordinating Committee, there has 

previously been at the NIH a Transagency Autism Committee of NIH Institute and 

Centers. Does this group still exist? If so, please provide details on the group, how often it 

meets, and any documents such as transcripts of meeting notes, and activities. 

Answer: The NIH formed an internal trans-NIH Autism Coordinating Committee (NIH ACC) 

in 1997 and is still in existence. The committee's goal is to enhance the quality, pace and 

coordination of autism-related efforts at the NIH. The NIH ACC also implements 

recommendations from the IACC strategic plan for autism research, as well as other initiatives 

and activities specific to management of the NIH research programs. The committee 

membership is composed of the following institutes: 

• National Institute of Mental Health (NIMH) 

• Eunice Kennedy Shriver National Institute of Child Health and Human 

Development (NICHD) 

• National Institute on Deafuess and Communication Disorders (NIDCD) 

• National Institute of Neurological Disorders and Stroke (NINDS) 

• National Institute of Environmental Health Sciences (NIEHS) 

• National Institute of Nursing Research (NINR) 

• National Center for Complementary and Alternative Medicine (NCCAM) 

• Representatives from the National Institute of Allergy and Infectious Diseases (NIAID) 

The committee meets monthly as an internal group and does not produce public documents. 

Question 11. Please provide a full list of therapies that the NICHDINIH is aware of 

currently being used to trcat autism with a bibliography of evidence to support their safety 

and efficacy, and ongoing research projects in which they are evaluated. Please provide a 
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notation to indicate whcn a therapy has not previously or is not currently being evaluated 

through NIH grants/contracts of intramurally. 

Answer: The Agency for HeaIthcare Research and Quality published in 2011 a literature review 

evaluating the effect of available interventions on children younger than thirteen with ASD and 

in 2012 a literature review evaluating the effects of available interventions on adolescents and 

young adults with ASD. For the children's review, the experts reviewed 714 articles comprising 

159 unique studies. For the adolescent and young adult review, the experts reviewed 1,035 

articles, but eliminated all but 32 for a variety of reasons: not relevant to key questions, ineligible 

population, study size too small, not original research, or data not suitable. Many of the studies 

reviewed received support from NIH. These documents provide the most recent and most 

thorough evaluations ofinterventions for ASD. 6 

The most recent analysis of the distribution of autism research across both Federal and private 

funders and across types of research is reported in the 2010 IACC Autism Spectrum Disorder 

Research Portfolio Analysis Report.7 In that year, 277 research projects were funded by Federal 

and private funders that addressed the question, "Which Treatments and Interventions Will 

Help?" for a total of over $68 million. Of those projects, 110 were funded by NIH. By using the 

"IACC Autism Spectrum Disorder Research Portfolio Analysis Web Tool,,,g the reader can see 

the projects that were funded by all funders, including NIH. These cover a range of treatment 

approaches, including behavioral, educational, medical/pharmacological and technology-based 

interventions. 

6 The full reports from these two reviews are available at http://www.effectivehealthcare.ahrq.gov/ehclproductsl 

I0616561CER26 Autism Report 04-14-20 II.pdf and http://www.effectivehealthcare.ahrq.govlehc/products/27!I 

11961CER65 Autism-Young-Adults 20120723.pdf. 

7 http://iacc.hhs.gov Iportfol io-analysisl20 I O/index.shtm!. 

R https:!Iiacc.hhs.govlapps!portfo!io-analysis-web-toollprojects, 

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The Honorable Patrick Meehan 

Question 1. [T]he CDC's April 2012 report on the prevalence of autism in the United 

States says" ASDs continue to be an important public health concern. The findings 

provided in this report confirm that prevalence estimates of ASD continue to increase in 

the majority of ADDM Network communities, and ongoing public health surveillance is 

needed to quantify and understand these changes over time. Further work is needed to 

evaluate mUltiple factors affecting ASD prevalence over time." 

Questions 1.1 thru 1.3 Assigned to CDC. 

Question 1.4: What is the federal research agenda for identifying subtypes of autism using 

genetic, brain imaging, and behavioral data? How can that research be most quickly 

integrated into treatment research? 

Answer: The Federal Interagency Autism Coordinating Committee (lAC C) provides an annual 

update to the IACC Strategic Plan (Plan) for ASD research that serves as the nation's research 

agenda. 9 Efforts to improve identification of autism phenotypes are addressed under the Plan's 

question 1 ("When should I be concerned?"), which focuses on research to improve tools for 

screening and diagnosis of various phenotypic features of autism; and question 2 ("How can I 

understand what is happening?"), which encourages research strategies that use technologies in 

genetics and brain imaging to understand the biological bases of ASD symptoms and expression. 

The lACe's 2010 Research Portfolio Analysis report highlights the range of intervention 

strategies and approaches that received Federal (and private) sources of research support under 

question 4 of the autism strategic plan. 10 Moreover, NIH institutes have put forward several 

research initiatives that specifically encouraged research efforts to hasten the translation of 

findings in basic neuroscience to treatments and interventions for ASD and other 

neurodevelopmental disorders. Examples include the following Funding Opportunity 

Announcements (FOAs): 

• New Experimental Medicine Studies: Fast-Fail Trials in Autism Spectrum Disorders. I I 

• Translational Research for the Development of Novel Interventions for Mental Disorders. 12 

• Preclinical Research on Model Organisms to Predict Treatment Outcomes for Disorders 

Associated with Intellectual and Developmental Disabilities. 13 

• Outcome Measures for Use in Treatment Trials for Individuals with Intellectual and 

Developmental Disabilities. 14 

9 http://iacc.hhs.gov/strategic-plan/2011/index.shtm!. 

10 http://iacc.hhs.gov/portfolio-analvsis/2010/index.shtml- q4). 

11 https:llwww. tbo.gov/index?s~opportunity&mode~form&id-"bad962ee955a I 748dd6 I e48eflbe72a3&tab=eore& c 

view=l. 

Ifhttj):I/grants.nih.gov/grams/guide/pa-fiIes/PAR-11-177.htm!. 

13 http://grants.nih.gov/grants/guide/pa-fiIes/PAR-11-038.html. 

14 http://grants.nih.gov/grants/guide/pa-fiIes/PAR-11-045.html. 

9 
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• Psychosocial/Behavioral Interventions and Services Research in Autism Spectrum 

Disorders. 15 

• The NeuroNEXT Clinical Trials. I6 

15 http://grants.nih.gov/grants/guide/pa-lilesIPA-II-283.html. 

16 http://grants.nih.gov/grants/guide/pa-files/PAR-l 1-343 .hlm1. 

10 
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HRSA Response to Question for the Record (QFR) from the House Oversight & Government 

Reform Committee Hearing on Autism, titled "1 in 88 Children: A Look Into the Federal 

Response to Rising Rates of Autism" on November 29, 2012 

Representative Patrick Meehan (p.5) 

Researchers at the Center for Autism Research at The Children's Hospital of Philadelphia 

conducted a needs assessment in 2011, which surveyed individuals with autism spectrum 

disorders and their families living throughout Pennsylvania. The researchers found that 

individuals with autism of all ages and their families are struggling to find the services they 

need and are often dissatisfied with the services that are provided. 

1) How can the federal government support the development and implementation of quality 

services delivered by trained professionals? 

Response: 

The Health Resources and Services Administration (HRSA) supports the development and 

implementation of quality services delivered by trained professionals through the Combating 

Autism Act Initiative (CAAI). HRSA administers several programs under CAAI that address 

different aspects of services for those with autism spectrum disorders (ASD) and other 

developmental disabilities. These HRSA funded programs include: (1) interdisciplinary training 

for health professionals, (2) evidence-based research interventions, and (3) state programs that 

address infrastructure/service building activities. These programs work collectively to promote 

early screening, diagnosis and evidence-based intervention for ASD. 

The results of a national evaluation of CAAI grant investments from 2008-2010 conducted by 

Insight Policy Research indicates progress in several critical areas related to ASD service delivery. 

Selected results from the evaluation are presented below. 

The Leadership Education in Neurodevelopmental and other related Disabilities (LEND) and 

Developmental Behavioral Pediatrics (DBP) programs has expanded their training resources and 

assisted local agencies and practices in building their capacity to provide community-based ASD 

services. During the 2009-2010 grant year, the LEND and DBP programs collectively trained 

close to 2,500 medium-term and 1,400 long-term trainees with increases of 13 percent and 22 

percent respectively during the 2010-2011 grant year. Trainees included health care providers 

(psychologists, pediatricians, speech language pathologists, social workers, nutritionists, nurses, 

physical therapists, occupational therapists, geneticists and genetic counselors, dentists, health 

administrators, and others), other professionals who work with children (special educators, child 

care providers and others), and families who have children with ASD/developmental 

disorders (DD). The grantees also responded to the training needs of practiCing pediatricians and 

other professionals who had limited experience identifying ASD in children. Between 2009 and 

2011, the LEND and DBP grantees collectively offered more than 1,600 continuing education 

events pertaining to ASD screening, diagnostic evaluation, and evidence-based interventions for 

children with ASD. During the same timeframe, these grantees also offered more than 4,000 

outreach trainings on valid and reliable screening and diagnostic tools, and/or evidence-based 

interventions for ASD and other DD, with the numbers increasing from year to year. These 
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increases have led to an expanded capacity of local communities to provide services for 

individuals with ASD. 

In 2009-10, the 39 LEND grantees collectively provided diagnostic evaluations to more than 

35,000 children. The following year, the number of diagnostic evaluations provided through a 

LEND program-affiliated clinic exceeded 44,000. Including the children who received diagnostic 

evaluations from a CAAI-supported LEND program in 2008-09, nearly 92,000 children were 

evaluated over the 3-year grant period. 

Grantees further worked to improve access to ASD services in several ways. To create more 

coordinated systems of care for ASD, grantees mapped existing resources, identified gaps in 

services, and worked to build more interdisciplinary collaboration among providers from 

different disciplines, such as medicine and education. The LEND and DBP grantees provided Title 

V and other agencies with technical assistance to expand community-based services for ASD. 

Finally, all grantees focused on the particular needs of underserved populations as a means of 

reducing disparities in access to ASD services. 

Research grantees developed evidence-based tools for clinicians and parents to support them in 

providing effective care for children with ASD. Together, the research grantees have developed 

eight medical guidelines, one comprehensive guideline report, fourteen toolkits for providers 

and parents to use in monitoring and managing ASD symptoms, and seven new behavioral 

measures for assessing a child's progress over time. 

Demonstration grants are provided to states to develop infrastructure building activities to 

improve the ASD delivery system by promoting early screening, diagnostic evaluation, and 

intervention, in order to develop strategies aimed at building awareness of ASD among 

providers, parents and the public. The grantees pursued various activities aimed at improving 

the system of services for children and youth with ASD and other DO. For example, each State 

grantee developed a collaborative planning structure to implement its State's autism plan and 

to coordinate ASD planning and services among State agencies and organizations. Additionally: 

• State grantees recruited and established new medical homes for children with ASD and 

other DO to improve delivery and coordination of services. 

• To promote early and continuous screening for ASD and other DO, the State grantees 

developed standardized screening and diagnostic guidelines for providers. 

• They also leveraged existing planning and service structures, such as public health 

regional centers, autism treatment centers, and provider networks, in order to expand 

regional systems of care. 

• Several State grantees developed training materials and resource guides focused on 

youth transition services. 
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Responses to Rep. Bill Posey 

Committee on Oversight and Government Reform 

Hearing on "1 in 88 Children: A look Into the Federal Response to Rising Rates of Autism" 

1. In 2000, you stated, "We do not know if autism rates are going up." Twelve years later, are you on 

behalf of the CDC now willing to state that the rates are going up - now that your study finds that 1 in 

88 children born in 2000 is on the autism spectrum? 

Answer: According to the most recent CDC report, the estimated prevalence of autism spectrum 

disorders (ASDs) continues to rise at most of the sites within CDC's Autism and Developmental 

Disabilities Monitoring (ADDM) Network.' While there is no simple explanation for the increase, we 

know that it is due in part to improved methods for identification and diagnosis, and to increased public 

awareness partly resulting from the expansion of behavioral health services in local communities. 

However, we do not know exactly how much of the increase is due to these factors. 

2. Do you consider the alarmingly high increase in autism rates a national crisis? 

Answer: CDC continues to consider ASDs an important public health concern in the United States and 

around the world. Moreover, CDC knows that the emotional toll on families and communities is 

staggering and the economic burden can be significant. CDC is committed to providing ongoing support 

to communities by tracking ASDs, helping families through early identification efforts, and addressing 

unanswered questions through research into the risk and protective factors associated with ASDs. 

3. Does CDC classify autism among children as an epidemic? If not, does CDC classify the autism rate 

of 1 in 55 boys as an autism epidemic among boys? If not, why now? If not, what rate would autism 

have to reach to be classified by the CDC as bring at epidemic levels? 

Answer: Autism is an important public health concern in the United States and around the world. The 

high estimated prevalence of autism is certainly cause for concern, regardless of how it is labeled. 

"Epidemic" is a term most frequently used in infectious disease outbreaks, but has been used in noninfectious applications as well. However, it is not a term that is clearly applicable to autism. CDC's 

specific definition of an epidemic is an observation of more cases than expected. With autism, there are 

many challenges in understanding how many cases are expected. We know that some of the increase in 

prevalence is due to how children with autism are identified and served in their local communities. CDC 

data show more children than ever are being identified with autism. 

4. The March 2008 CDC Autism prevalence study published by the CDC put the rate of autism in 

children born in 2000 at 1 in 88 children, including a rate of 1 in 55 boys. This is significantly higher 

than previous estimates by the CDC. Since publication of that study what budget priority changes has 

CDC made to dedicate more resources to understanding the relationships and causes of autism. 

Additionally, please provide the CDC actual spending levels for Autism for 2005-2012. Include 

proposed expenditures for 2013-2018. 

Answer: CDC's current FY 2012 appropriation for autism is $21.3 million - up more than 30 percent 

since 2008 - including $9.7 million for research. The President's Budget proposes the same amount for 

1 Data are available at http://www.cdc.gov/NCBDDD/autism/data.htmi. 

1 
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Autism in 2013. CDC's funding levels for the National Center for Birth Defects and Developmental 

Disabilities (NCBDDD). 

CDC Autism Appropriation History (NCBDDD) 

FY 2003 FY 2004 FY 200S FY 2006 FY 2007 FY 2008 FY 2009 FY 2010 FY 2011 FY 2012 

$10,811 $13,242 $14,873 $15,067 $14,801 $16,212 $20,400 $22,058 $21,380 $21,265 

• Budget history reflects funds appropriated to CDC's National Center on Birth Defects and Developmental Disabilities, 

FY200HY2012 

CDC is currently conducting the largest study in the United States to help identify factors that put 

children at risk for ASD. 2 

5. The above-mentioned study put the rate a 1 in 88 children for the 2000 birth cohort, which is 

significantly higher than any earlier birth cohort. When did the CDC first become aware of these 

alarmingly high levels-assuming it was before the final publication of the study-and what steps has 

CDC taken to look for signals for further increases in the autism rates? Please share with the 

committee any additional data you have, including preliminary data, regarding the autism rates 

children born in each of the following years: 2001, 2002, 2003, 2004, 2005, 2006, 2007, 2008, or later. 

If there is not such data at present, when can we expect the CDC to provide this data? 

Answer: CDC first became aware of the updated estimates of the prevalence of ASDs in 2011 during the 

analysis for publication. CDC released its updated prevalence report on ASDs in March 2012. CDC's 

ongoing tracking through the Autism and Developmental Disabilities Monitoring (ADDM) Network will 

help monitor future changes in the prevalence of ASDs. 

There are no additional prevalence data on ASDs to share for those birth years. In 2014, CDC's ADDM 

Network expects to release an updated prevalence report on children who were born in 2002. 

6. Has the CDC conducted a study on the safety of the current vaccination schedule? More 

specifically, has the CDC studies the safety and effectiveness of administering the currently 

recommended six-month immunizations: HepB, RV, DTaP, Hib, PCV, IPV and influenza immunizations? 

Please provide the pre-licensure and post-licensure studies that support this CDC recommendation. 

Answer: The current childhood vaccination schedule protects vulnerable children from 16 infectious 

diseases and is designed to safely protect children from vaccine preventable diseases at the earliest age 

possible. The recommendations for immunizations are made by CDC's Advisory Committee on 

Immunization Practices (ACIP). Determinations about the age at which immunization should 

commence, as well as immunization schedules, are based on scientific studies and expert opinions from 

public health officials and specialists in clinical and preventive medicine and published in General 

Recommendations on Immunization. 3 CDC recommends that health care providers adhere as closely as 

possible to the recommended schedule. Delaying vaccines outside of the medically acceptable age 

ranges increases a child's exposure to the risks from vaccine preventable diseases. 

2 To learn more, please visit http://www.cdc.gov!seed. 

3 http://www.cdc.gov!mmwr!preview(mmwrhtml!rr6002al.htm?s cid=rr6002al e. 

2 
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ACIP evaluates pre-licensure and post-licensure safety and effectiveness for the immunizations currently 

recommended in the childhood immunization schedule and publishes their recommendations in CDC's 

MMWR. The ACIP recommendations for the specific vaccines listed above are: 

A Comprehensive Immunization Strategy to Eliminate Hepatitis B Virus Infection in the United 

States' 

• Prevention and Control of Influenza with Vaccines - 2012-2013 Influenza Seasons and CDC 

Prevention and control of influenza with vaccines: Recommendations of the Advisory 

Committee on Immunization Practices (ACIP), 2010. MMWR 2010;59(No. RR-8).6 

Updated Recommendations for Use of Tetanus Toxoid, Reduced Diptheria Toxoid and Acellular 

Pertussis (Tdap) Vaccine.' 

Prevention of Pneumococcal Disease Among Infants and Children." 

• Prevention of Rotavirus Gastroenteritis Among Infants and Children: 

• Updated Recommendations for Use of Hib Vaccine.lO 

• Updated Recommendations Regarding Routine Poliovirus Vaccination" and recommendations 

from 2000." 

7. Why has the CDC refused to conduct or facilitate the conduct of a retrospective study comparing 

vaccinated children with unvaccinated children? 

Answer: CDC assesses the safety of vaccines administered to children, adolescents and adults in the 

United States through high quality, science-based surveillance and research and is committed to 

assuring that the vaccines administered in this country are safe and effective. CDC has not conducted a 

study of health outcomes in vaccinated versus unvaccinated populations for several reasons: 

Vaccines save lives and are one of the most effective preventive measures in a clinician's 

medical arsenal. The strongest study design that could yield meaningful results between these 

two populations is a randomized controlled clinical trial in which a vaccinated population is 

compared to a study population that receives no vaccine or vaccine not given in accordance 

with the current recommended schedule. Because unvaccinated or undervaccinated children in 

the U. S. have higher rates of some vaccine-preventable disease than vaccinated children, 

randomized, controlled trials designed to assess the safety of recommended versus alternative 

immunization schedules cannot be conducted on ethical grounds. 

The vast majority of children in the United States are vaccinated making it difficult to find 

unvaccinated populations. 

4 http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5416al.htm. 

5 http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6132a3.htm. 

6 http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5908al.htm?s cid=rr5908al w. 

7 http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6001a4.htm. 

8 http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5911al.htm. 

9 http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5802al.htm. 

10 http://www.cdc.gov/mmwr/preview!mmwrhtml/mm5836a5.htm. 

11 http://www.cdc.gov/mmwr/PDF/wk/mm5830.pdf. 

12 http://www.cdc.gov/mmwr/preview!mmwrhtml!rr4905a1.htm. 

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• The study of health outcomes and control for confounders in vaccinated and unvaccinated 

populations would be challenging because these two groups have different baseline health and 

social characteristics. 

• There would be inaccuracies in making conclusions for the general population based on a nonrandom selection of families who choose not to vaccinate. 

The Institute of Medicine (10M) is currently conducting an independent assessment surrounding 

the feasibility of studying health outcomes in children who were vaccinated according to the 

CDC recommended schedule and those who were not." 

8. There are databases, including the Vaccine Safety Datalink and state databases where information 

is readily available. Does the CDC believe that such a study would provide useful data in assessing the 

safety of childhood vaccines including any acute or chronic conditions for which there may be a 

correlation between vaccinated and non-vaccinated children? Why has such a retroactive study not 

been conducted by the CDC? What if any specific objection does the CDC have to the conduct of such 

a retroactive study? What if any specific value do you believe such a study would provide? If so, 

why? If not, why not? For more than a decade the debate over this issue has ensued, CDC has 

refused to conduct a study examining this particular issue, that common sense would tell anyone 

should be studied. When does the CDC plan to do such a study, and what steps will CDC take to 

involve outside parties to ensure that the study has broad acceptance across all communities? 

Answer: CDC and the National Vaccine Program Office co-funded the 10M to conduct an independent 

assessment of the feasibility of studying the safety of the childhood vaccine schedule, including 

comparing children who were vaccinated according to the CDC recommended schedule with those who 

were not vaccinated and those vaccinated on an alternative vaccine schedule. The 10M commissioned a 

paper, Study Designs for the Safety Evaluation of Different Childhood Immunization Schedules, which 

was posted on the 10M website for public comment. The 10M identified potential research approaches, 

methodologies, and study designs that could inform new studies of the effects of multiple 

immunizations, including an assessment of the possible strengths and limitations of each approach, 

methodology and design, and their logistical and ethical feasibility. The 10M report, The Childhood 

Immunization Schedule and Safety: Stakeholder Concerns, Scientific Evidence, and Future Studies, 

www.iom.edu/chiidimmunizationschedule.wasissuedJanuary16.2013.lnit. the Committee expressed 

support for the childhood immunization schedule as a tool to protect against vaccine preventable 

diseases. The Committee also recommended using existing healthcare records data to continue to study 

the safety of vaccines, and reconfirmed a finding of the National Vaccine AdviSOry Committee (NVAC) 

that conducting a study which required some children to receive fewer vaccines than the recommended 

schedule, as would be needed for a randomized controlled trial, would be unethical (links to the 

childhood schedule and to the NVAC report are available on the CDC's Vaccine Safety website at 

http://www.cdc.gov/vaccinesafety/Concerns/childhoodimmunizationiomstudies.html).·4 

13 Information can be found at http://www.iom.edu/Activities/PublicHealth/Childhoodlmmunization.aspx 14 1d• 

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9. What is your view regarding autism causation and in particular the putative link between 

thimerosal exposure via vaccines and autism? 

Answer: CDC has conducted research to evaluate vaccines and neurodevelopmental outcomes 

including autism and found no reliable evidence that certain vaccines or vaccine ingredients cause 

autism. To the contrary, studies have repeatedly found no evidence of a causal association. Copies of 

the studies are included as attachments. 

10. Is Thimerisol currently used in any vaccines administered to children in the US that are under age 

18? If so, please list those vaccines and how many of those vaccines are administered to children in 

the US that are under age 18. 

Answer: The only routinely recommended vaccines that contain thimerosal and are currently 

administered to children under age 18 are seasonal flu vaccines. The specific brands and presentation 

that contain thimerosal or trace thimerosal are: 

Fluzone Multi Dose Vial-O.Ol% thimerosal 

Fluvirin Multi Doses Vial-O.Ol% thimerosal 

Fluvirin Single Dose Syringe-trace amounts 

• Afluria Multi Dose Vial- 0.01% thimerosal 

Other licensed vaccines that contain thimerosal and may be used in children, though are not routinely 

recommended include: Td vaccine, DT vaccine, Tetanus toxoid, and meningococcal polysaccharide 

vaccine.15 

We are not able to quantify information about the number of doses of these vaccines that are 

administered to children in the United States under the age of 18 each year because thimerosal content 

varies by brand, and influenza vaccine coverage information does not include specific brand and 

presentation information. 

11. How would independent researchers go about verifying the CDC studies that deny a causal 

relationship between thimerosal and autism? Is the Vaccine Safety Datalink open to the public? Are 

the VSD datasets required to be preserved for independent analysis and verification? Does the CDC or 

any federal agency actually verify that these datasets are preserved for independent verification? 

Answer: CDC and the managed care organizations (MCOs) that comprise the Vaccine Safety 

Datalink (VSD) project established a data sharing program in 2002 to allow external researchers to 

access VSD data through the Research Data Center (RDC) located at CDC's National Center for Health 

Statistics (NCHS). Up to December 31, 2000, complete VSD datasets are available for use in conducting 

new analyses through the RDC. External researchers may contract with the VSD MCOs individually to 

access data from the VSD project collected after December 31, 2000. The external researcher must 

follow established MCO procedures and all studies using VSD data must be approved by each MCO's 

Institutional Review Board (IRB) whose data is being requested for study. 

15 This information was taken from Thimerosal in Vaccines at http://www.fda.gov!Bio!ogicsBloodVaccines/Safety 

Avaiiability/VaccineSafetv/ucm096228.htmUtl. accessed 12/13/12. Of note, Tripedia, a DTaP product that 

contained trace amounts of thimerosal, has not been supplied in the United States since mid-2011. 

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For the September 2007 study in the New England Journal of Medicine (NEJM), Infant and 

Environmental Exposures to Thimerosal and Neuropsychological Outcomes at Ages 7 to 10 Years and the 

September 2010 study in Pediatrics, Prenatal and Infant Exposure to Thimerosal from Vaccines and 

Immunoglobulins and Risk of Autism, CDC provided public use data sets consisting of final data files, 

documents and reports. These data sets are available by request through CDC's Immunization Safety 

Office for the 2007 study.'6 

Independent researchers have used CDC's publicly available data sets from the 2007 and 2010 studies for 

the following studies: 

June 2010, On-Time Vaccine Receipt in the First Year Does Not Adversely Affect 

Neuropsychological Outcomes, Pediatrics (Volume 125, Smith, Michael and Woods, Charles, 

1134-1141): Researchers used the data from the 2007 NEJM study to determine whether 

children who received recommended vaccines on time during the first year of life had different 

neuropsychological outcomes at 7 to 10 years of age as compared with children with delayed 

receipt or nonreceipt of these vaccines. They found that timely vaccination during infancy had 

no adverse effect on neuropsychological outcomes 7 to 10 years later. 

July 23, 2011, Thimerosal Exposure in Early life and Neuropsychological Outcomes 7-10 Years 

Later, Journal of Pediatric Psychology (Barile, John., et ai, 1-13): Independent researchers used 

the data from the 2007 NEJM study to investigate associations between the receipts of 

thimerosal-containing vaccines and immune globulins early in life and neuropsychological 

outcomes assessed at 7 - 10 years. They found no statistically significant associations between 

thimerosal exposure from vaccines early in life and several neuropsychological outcomes 

including general intellectual functioning, speech and language, verbal memory, 

attention/executive functioning, fine motor coordination and behavior regulation. 

Two manuscripts that used the 2010 Pediatrics dataset are pending publication. 

12. As you may be aware, federal studies indicate that the amount of mercury on the fetus side of the 

placenta is higher than the blood on the mother's side of the placenta. 00 you feel that it is safe to 

inject 100 mcg of thimerosal (50 mcg mercury) into a pregnant woman in the first trimester via the 

seasonal influenza and A HINl vaccine (as was recommended by the CDC in 2009-2010)? 

Answer: Thimerosal has been used as a preservative in vaccines since the 1930s. It is 49.6% mercury by 

weight and is metabolized into ethylmercury and thiosalicylate. Another form of mercury, 

methylmercury, makes its way through the food chain in fish, animals, and humans. Exposure to 

methylmercury has been shown to pose a variety of health risks to humans. Studies comparing 

ethylmercury and methylmercury indicate that they are processed differently in the human body that 

one form cannot be used as a surrogate for predicting the toxicity or pharmacokinetics of the other. 

Ethylmercury is broken down and excreted much more rapidly than methylmercury. For example, 

studies of the half-life of ethylmercury in the blood of human infants resulting from vaccinations 

containing thimerosal have been reported to range from 3.7 days to 7 days, compared to a range of 50 

to more than 150 daysfor methylmercury in human adults. Therefore, ethylmercury (the type of 

mercury found in the influenza vaccine) is much less likely than methylmercury (the type of mercury in 

the environment) to accumulate in the body and cause harm. The only studies that showed higher 

umbilical cord blood mercury levels specifically investigated methylmercury, not_ethylmercury that is 

16 Information about these data sets is available at http://www.cdc.gov/vaccinesafety/Concerns/Thimerosal! 

QA Pediatrics-thimerosal-autism.html and http://www.cdc.gov/vaccinesafety/Concerns/Thimerosal/ 

neuropsychological Outcomes.htm!. 

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contained in thimerosal. There are no studies that CDC is aware of that looked at ethylmercury and 

investigated cord blood vs. maternal blood levels. 

Regardless of the manufacturer, in the multi-dose influenza vaccine preparation, the amount of mercury 

per injection is 25 ug/0.5 ml dose (0.01%) as published by CDC for 2012-2013 influenza vaccines. Singledose vaccine presentations without thimerosal are also available. During the past 50 years, 

approximately 50,000 pregnant women have been actively studied in different countries, including 

women in all trimesters of pregnancy. No increased risks for birth defects, spontaneous abortion or 

fetal death were observed after inactivated influenza vaccine. Additionally, data suggest that 

vaccination of pregnant women during their second and third trimesters may have protective effects for 

preterm birth and fetal growth. 

CDC continues to monitor and study vaccine safety in pregnant women during all trimesters and uses 

this research to inform evidence-based maternal vaccination policies. CDC's comprehensive review of 

reports to Vaccine Adverse Event Reporting System (VAERS) identified no unusual patterns of pregnancy 

outcomes among vaccinated women. Benefits of vaccinating pregnant women usually outweigh 

potential risks when the likelihood of disease exposure is high, when infection would pose a risk to the 

mother or fetus, and when the vaccine is unlikely to cause harm." 

13. The FDA has licensed and CDC's recommendation includes administration of thimerisol-preserved 

vaccines for use in children as young as 6 months of age. In the mid-20COs the CDC expanded their 

recommendation of flu vaccines for all children, yet millions of children receive thimerisol-preserved 

vaccines each year. How many children received thimerisol-preserved flu vaccines in the 2011-2012 

flu season? At similar immunization rates, how many children would receive thimerisol-preserved flu 

vaccines in the 2012-2013 flu season? 

Answer: We are not able to quantify information about the number of children who have received 

thimerosal-preserved flu vaccines because thimerosal content varies by brand and vaccine coverage 

information does not include specific brand and presentation information. 

14. How many thimerisol-free (only trace amounts) influenza vaccines were produced for the 2011-

2012 flu season? Please break down inhaled vs. injected. How many does CDC expect for each in the 

2012-2013 flu season? 

Answer: 

2011-2012 season: Manufacturers projected about 79M doses of thimerosal-free (or only trace 

amounts) influenza vaccine, of which about 15-16 M were projected to be intranasal. 

2012-2013 season: Manufacturers projected about 62M doses of thimerosal-free (or only trace 

amounts) influenza vaccine, of which about 13M were projected to be intranasal. 

15. Please provide the committee with a detailed explanation of your role, and the role of Dr. Diana 

Schendel in the Madsen et a!. 2003 Pediatrics study on thimerosal-containing vaccines and autism 

(using Denmark autism incidence data)? 

Answer: The Madsen et al. publication acknowledges three staff from CDC'S National Center on Birth 

Defects and Developmental Disabilities (NCBDDD): Coleen Boyle, Jose F. Cordero, and Diana Schendel. 

17 http://www.cdc.gov/mmwr/preview/mmwrhtml/rr6002al.htm7s dd=rr6002al e. 

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At the request of the Danish researchers, Coleen Boyle and Diana Schendel reviewed the paper and 

provided comments, a common role CDC fills for its colleagues in autism and other fields. In addition, 

Jose F. Cordero, who at the time was serving as NCBDDD Director, wrote a letter to Pediatrics 

encouraging the journal to consider the article for publication. The letter explained that the Madsen et 

al. study filled an important gap in the research by providing an epidemiologic analysis related to autism 

and thimerosal. CDC did not provide funding for the study, and CDC researchers did not analyze any of 

the data. 

16. Are you aware that data were withheld by Denmark authors of the Madsen 2003 paper? These 

data showed that the downward trend in autism incidence continued in the years following the study 

end date. Has the CDC published subsequent studies analyzing the decline in autism that was first 

indicated in the Madsen study? 

Answer: As CDC did not fund the collection of the data, nor analyze the data, CDC is not aware of, and 

cannot say with any degree of certainty that data were withheld by the Denmark authors of this paper. 

CDC has not published any subsequent studies analyzing the decline in autism referred to in the Madsen 

et al. study. 

17. Did you work with Dr. Poul Thorsen? Please provide the committee with the extent of your work 

with Dr. Thorsen. When was your last communication with Dr. Thorsen? 

Answer: CDC has a long-standing relationship with the Danish Agency for Science, Technology, and 

Innovation and Aarhus University in Denmark and has worked with Dr. Thorsen in the past; however, Dr. 

Thorsen was not a direct grant recipient of CDC funds. He served as a senior scientist on research studies 

conducted by those agencies and CDC, including studies on autism. CDC's last communication with Dr. 

Thorsen was in September 2010. 

18. What role, direct or indirect, has Dr. Thorsen had with any of the databases and datasets that 

have been utilized by the CDC either directly or indirectly as a part of studies related to autism, 

vaccine safety, and/or child health and development? This includes any study in which CDC 

participated in any way including but not limited to direct or indirect funding, the involvement of CDC 

employees, or the involvement of non-CDC employees who were receiving some direct or indirect 

CDC funds. Please provide a detailed response to the Committee for each study and whether and 

what Or. Thorsen's direct and/or indirect role was with each study and/or databases that may have 

been utilized for any such study. 

Answer: Dr. Thorsen served as a senior scientist on research studies conducted as part of the CDCDenmark Program on topics including cerebral palsy, autism, alcohol use in pregnancy, and Down 

syndrome. Or. Thorsen was one of many co-authors on these research projects, all of which were 

subject to extensive peer review. As with many scientific publications, only some of the co-authors on 

these studies had access to the raw data and/or involvement in an analysis of the data. CDC has no 

reason to believe that the integrity of the science was compromised by Dr. Thorsen's role as co-author. 

19. What specific steps has the CDC undertaken to ensure integrity of any research in which Dr. 

Thorsen, a wanted fugitive has been either directly or indirectly involved? Has the CDC gone back to 

validate the veracity of the studies he participated in either as an author, co-author? Please provide 

the specific actions taken by the CDC with respect to each individual study. 

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Answer: As CDC has no reason to believe that the integrity of the science was compromised by Dr. 

Thorsen's role as co-author, no further validation has been pursued. 

20, What would be the effect to the 'whole body of evidence' if all papers that Dr. Thorsen is a coauthor on were excluded? Please provide a list and copies of the studies which you consider to be the 

'whole body of evidence' discounting an autism-vaccine injury/mercury link. 

Answer: There would be no substantial effect. It is important to recognize that our overall 

understanding of a field of study, like autism, is not based primarily on the work of anyone author. CDC 

has conducted research to evaluate vaccines and neurodevelopmental outcomes, including autism." 

Dr. Thorsen was the co-author on one study that was published in the New England Journal of Medicine 

(2002; 347:1477-82). CDC's studies are consistent with the vast majority of science that does not 

support a causal association between vaccines and autism. 

21. Will the CDC retract any of the collaborative publications with Dr. Thorsen that it has not gone 

back and independently validated? If not, why? 

Answer: CDC does not plan to retract any of the collaborative publications with Dr. Thorsen, as there is 

no reason to believe that the integrity of the science was compromised by Dr. Thorsen's role as coauthor. 

22. Please list for the Committee, any studies that CDC employees and Dr. Thorsen are listed as 

coauthors since his Federal indictment on April 14, 2011. 

Answer: The following studies were published after April 14, 2011 and include Dr. Thorsen and at least 

one CDC co-author: 

1. Hvidtj¢rn D, Grove J, Schendel D, Schieve LA, Svaerke C, Ernst E, Thorsen P. Risk of autism 

spectrum disorders in children born after assisted conception: a population-based follow-up 

study. J Epidemiol Community Health. 2011;65(6):497-502. 

2. Schelonka RL, Maheshwari A, Carlo WA, Taylor 5, Hansen NI, Schendel DE, Thorsen P, Skogstrand 

K, Hougaard DM, Higgins RD; NICHD Neonatal Research Network. T cell cytokines and the risk of 

blood stream infection in extremely low birth weight infants. Cytokine. 2011;53(2):249-55. 

3. Carlo WA, McDonald SA, Tyson JE, Stoll BJ, Ehrenkranz RA, Shankaran 5, Goldberg RN, Das A, 

Schendel D, Thorsen P, Skogstrand K, Hougaard DM, Oh W, Laptook AR, Duara S, Fanaroff AA, 

Donovan EF, Korones 5B, Stevenson OK, Papile LA, Finer NN, O'Shea TM, Poindexter BB, Wright 

LL, Ambalavanan N, Higgins RD; Eunice Kennedy Shriver National Institute of Child Health and 

Human Development Neonatal Research Network. Cytokines and neurodevelopmental 

outcomes in extremely low birth weight infants. J Pediatr. 2011;159(6):919-25. 

4. Natarajan G, Shankaran S, McDonald SA, Das A, Ehrenkranz RA, Goldberg RN, Stoll BJ, Tyson JE, 

Higgins RD, Schendel D, Hougaard DM, Skogstrand K, Thorsen P, Carlo WA. Association Between 

Blood Spot Transforming Growth Factor-f3 and Patent Ductus Arteriosus in Extremely Low-Birth 

Weight Infants. Pediatr Cardio!. 2012; [epub ahead of print] 

5. Ambalavanan N, Carlo WA, McDonald SA, Das A, Schendel DE, Thorsen P, Hougaard OM, 

Skogstrand K, Higgins RD; Cytokine and Generic Database Subcommittees of the Eunice Kennedy 

Shriver National Institute of Child Health Human Development Neonatal Research Network. 

18 A chart of these studies is available at http://www.cdc.gov/vaccinesafety/OO pdf/CDCStudiesonVaccinesand 

Autism.pdf. 

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Cytokines and posthemorrhagic ventricular dilation in premature infants. Am J Perinatol. 

2012;29(9):731-40. 

23. When did CDC first become aware of financial irregularities with regard to Dr. Thorson and his 

work? When did CDC initiate an investigation into Dr. Thorson's alleged criminal activities? 

Answer: CDC became aware of the irregularities in the first quarter of 2009 following a meeting 

between CDC and representatives from Aarhus University. Shortly thereafter, CDC engaged appropriate 

parties within the Department of Health and Human Services for further action. 

24. Will the CDC provide the Committee with any and all communications that CDC employees or 

surrogates have had with Dr. Thorsen? If not, why not? If so, will those be provided to the Committee 

by February 1, 2013? 

Answer: CDC will coordinate with the committee to determine the most appropriate process for 

addressing the committee's question and request for documents. 

25. The CDC granted Dr. Thorsen's projects over $16 million in taxpayer money. Is further 

disbursement ongoing or planned? If not, when was the last payment made to Dr. Thorsen and/or the 

Danish contract? 

Answer: While CDC has a long-standing relationship with the Danish Agency for Science, Technology, 

and Innovation and Aarhus University in Denmark, Dr. Thorsen was never a direct grant recipient of CDC 

funds. The cooperative agreement for the CDC-Denmark Program ended January 31, 2012. 

26. Utilizing the DSM 5 criteria will likely make it difficult to compare populations of children 

diagnosed with autism under D5M 4 vs. D5M 5. This will make comparisons of populations pre- and 

post-DSM 5 difficult. What specific steps is the CDC undertaking to ensure that use of D5M 5 criteria 

does not disrupt long-term studies on the rates of autism? 

Answer: While the DSM-S is not scheduled for release until May, 2013, CDC has already taken steps to 

evaluate the potential impact of proposed changes on estimates of the prevalence of autism spectrum 

disorders (ASDsj. Results from our preliminary evaluation were presented in a scientific poster at the 

International Meeting for Autism Research (1M FAR) in May 2012, and a full manuscript on these findings 

will be submitted for publication in early 2013. In the future, because of the way our surveillance data 

are collected, CDC will be able to apply both the current (DSM-IV) and future (DSM-S) diagnostic criteria 

to generate prevalence estimates based on the different definitions and evaluate the impact on 

prevalence trends and diagnostic practices. Thus CDC will be able to provide comparable trend data 

despite changes in diagnostic criteria. 

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Responses to Rep. Patrick Meehan 

Committee on Oversight and Government Reform 

Hearing on "1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autsim" 

Question 1. [T)he CDC's April 2012 report on the prevalence of autism in the United States says "ASDs 

continue to be an important public health concern. The findings provided in this report confirm that 

prevalence estimates of ASD continue to increase in the majority of AD OM Network communities, and 

ongoing public health surveillance is needed to quantify and understand these changes over time. 

Further work is needed to evaluate multiple factors affecting ASD prevalence over time." 

1.11 understand from the CDC's prevalence data, and other studies, that there is an alarming rate of 

increase in autism diagnosis. In your opinion, what accounts for this? 

Answer: While there is no simple explanation for the increase, we know that it is due in part to 

improved methods for identification and diagnosis, and to increased public awareness partly resulting 

from the expansion of behavioral health services in local communities. However, we do not know 

exactly how much of the increase is due to these factors. 

1.2 Has CDC done any research into environmental factors that correlate with ASD, such as gastro 

intestinal disorders or auto immune diseases? 

Answer: Last year, CDC published an analysis using survey data and found that children with autism 

spectrum disorders (ASDs) were at higher risk for stomach/intestinal illness, food allergies, or frequent 

diarrhea/colitis. CDC'S Study to Explore Early Development is currently collecting information on gastrointestinal function and autoimmunity to further address these topiCS.'9 

1.3 In the report, CDC refers to the significant rise in autism as "an important public health concern" 

but many in the community call it a crisis, an emergency or even an "epidemic". At what point does 

the increase in autism cases become more than a concern? Why isn't it an epidemic? 

Answer: Autism is certainly an important public health concern in the United States and around the 

world. The continuing, dramatic rise in the estimate of autism is certainly cause for concern, regardless 

of how it is labeled. "Epidemic" is a term most frequently used in infectious disease outbreaks, but has 

been used in non-infectious applications as well. However, it is not a term that is clearly applicable to 

autism. CDC's specific definition of an epidemic is an observation of more cases than expected. With 

autism, there are many challenges in understanding how many cases are expected. Some of the 

increase in prevalence is due to how children with autism are identified and served in their local 

communities. CDC data show more children than ever are being identified with autism. 

1.4 Assigned to NIH 

Question 2. Assigned to HRSA 

Question 3. The IACC annual Strategic Plan for 2011, outlines the following: "Decision makers (people 

with ASD, families, clinicians, and payors) frequently lack critical information about which treatment 

is best for an individual person. While there are many interventions in wide use, the field lacks 

19 More information is available at www,cdc.gov/seed. 

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comparative studies of their value or how these various interventions should be staged or combined. 

Comparative effectiveness research yields information from head-to-head comparisons of 

interventions or policies that, when combined with a personalized approach, can inform decision 

makers about health care choices. This approach, already helpful for cardiovascular and cancer 

research, needs to be developed to inform ASD interventions." 

3.1 With the increased rate of Autism, given that there are no known medications to treat core 

symptoms of Autism and an increasing financial burden being places on families and taxpayers, why 

are more cost effective scientifically validated interventions and treatment modalities like Applied 

Behavior Analysis, which is identified by the CDC as an effective method and endorsed by both the 

American Academy of Pediatrics and the U.S. Surgeon General, not supported federally? 

Answer: CDC identifies Applied Behavior Analysis (ABA) as a notable treatment approach and one that 

has become widely accepted among health care professionals and used in many schools and treatment 

clinics.'o The Interagency Autism Coordinating Committee also provides information on the latest 

advances in treatments and interventions through the annual updates of its Strategic Plan for Autism 

Spectrum Disorder Research" and annual publication of the IACC Summary of Advances in Autism 

Spectrum Disorder Research. n 

3.2 What could be done to increase support or promote these types of services? 

Answer: The Interagency Autism Coordinating Committee annually updates its Strategic Plan for Autism 

Spectrum Disorder Research and publishes the IACC Summary of Advances in Autism Spectrum Disorder 

Research,23 which describe recent advances in treatment and intervention research, making this 

information available to the public. In addition, research advances are presented and discussed in a 

public forum at meetings of the IACC, providing another way for the public to access information about 

the latest developments in treatment and intervention research. Currently, the IACC is finalizing the 

2012 Strategic Plan. 24 

20 http://www.cdc.gov!NCBDDD!autism/treatment.html. 

21 http://iacc.hhs.gov/strategic-plan/' 

22 http://iacc.hhs.gov!summary-advances!. 

23 Infra at footnotes 12 and 13. 

24 More information is available at http://iacc.hhs.govl. 

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