[House Hearing, 112 Congress]
[From the U.S. Government Publishing Office]
1 IN 88 CHILDREN: A LOOK INTO THE FEDERAL RESPONSE TO RISING RATES OF
AUTISM
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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
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Available via the World Wide Web: http://www.fdsys.gov
http://www.house.gov/reform
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COMMITTEE ON OVERSIGHT AND GOVERNMENT REFORM
DARRELL E. ISSA, California, Chairman
DAN BURTON, Indiana ELIJAH E. CUMMINGS, Maryland,
JOHN L. MICA, Florida Ranking Minority Member
TODD RUSSELL PLATTS, Pennsylvania EDOLPHUS TOWNS, New York
MICHAEL R. TURNER, Ohio CAROLYN B. MALONEY, New York
PATRICK T. McHENRY, North Carolina ELEANOR HOLMES NORTON, District of
JIM JORDAN, Ohio Columbia
JASON CHAFFETZ, Utah DENNIS J. KUCINICH, Ohio
CONNIE MACK, Florida JOHN F. TIERNEY, Massachusetts
TIM WALBERG, Michigan WM. LACY CLAY, Missouri
JAMES LANKFORD, Oklahoma STEPHEN F. LYNCH, Massachusetts
JUSTIN AMASH, Michigan JIM COOPER, Tennessee
ANN MARIE BUERKLE, New York GERALD E. CONNOLLY, Virginia
PAUL A. GOSAR, Arizona MIKE QUIGLEY, Illinois
RAUL R. LABRADOR, Idaho DANNY K. DAVIS, Illinois
PATRICK MEEHAN, Pennsylvania BRUCE L. BRALEY, Iowa
SCOTT DesJARLAIS, Tennessee PETER WELCH, Vermont
JOE WALSH, Illinois JOHN A. YARMUTH, Kentucky
TREY GOWDY, South Carolina CHRISTOPHER S. MURPHY, Connecticut
DENNIS A. ROSS, Florida JACKIE SPEIER, California
BLAKE FARENTHOLD, Texas
MIKE KELLY, Pennsylvania
VACANCY
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
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 IN 88 CHILDREN: A LOOK INTO THE FEDERAL RESPONSE TO RISING RATES OF
AUTISM
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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 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 involved 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 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.
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
mercury 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.
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.
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.
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 ability 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 early-life 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 NIH-supported 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:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
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, 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:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
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?
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 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 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.
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.
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
services 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 mortifying. 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, 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----
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 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.
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 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 entails 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
low-income 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.
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 exchange 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.
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?
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
multi-dose 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 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, so-called 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 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.
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 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 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.
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.
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?
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.
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. 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 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 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.
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 disagreement 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:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
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 quality-of-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 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:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
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.
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:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
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 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:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
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 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 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:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
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 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:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
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, 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
crisis 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.
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 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, 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 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.
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 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
State-by-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 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 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.
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 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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