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Board on Health Sciences Policy
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THE NATIONAL ACADEMIES PRESS • 500 Fifth Street, N.W. • Washington, DC 20001
NOTICE: The project that is the subject of this report was approved by the
Governing Board of the National Research Council, whose members are drawn
from the councils of the National Academy of Sciences, the National Academy
of Engineering, and the Institute of Medicine. The members of the committee
responsible for the report were chosen for their special competences and with
regard for appropriate balance.
This project was supported by contracts between the National Academy of Sci-
ences and the Alzheimer’s Association; Amgen Inc.; AstraZeneca Pharmaceuti-
cals, Inc.; the Centers for Disease Control and Prevention; the Department of
Health and Human Services’ National Institutes of Health (NIH, Contract No.
N01-OD-4-213) through the National Institute on Alcohol Abuse and Alcohol-
ism, the National Institute on Aging, the National Institute on Drug Abuse, the
National Eye Institute, the NIH Blueprint for Neuroscience Research, the Na-
tional Institute of Mental Health, and the National Institute of Neurological Dis-
orders and Stroke; Eli Lily and Company; GE Healthcare, Inc.; GlaxoSmith-
Kline, Inc.; Johnson & Johnson Pharmaceutical Research and Development,
Inc.; Merck Research Laboratories, Inc.; the National Multiple Sclerosis Soci-
ety; the National Science Foundation (Contract No. OIA-0647541); Pfizer
Global Research and Development, Inc.; and the Society for Neuroscience. The
views presented in this publication are those of the editors and attributing au-
thors and do not necessarily reflect the view of the organizations or agencies that
provided support for this project.
International Standard Book Number-13: 978-0-309-10881-2
International Standard Book Number-10: 0-309-10881-0
Additional copies of this report are available from the National Academies
Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-
6242 or (202) 334-3313 (in the Washington metropolitan area); Internet,
http://www.nap.edu.
For more information about the Institute of Medicine, visit the IOM home page
at: www.iom.edu.
Copyright 2008 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America.
Suggested citation: Institute of Medicine (IOM). 2008. Autism and the environ-
ment: Challenges and opportunities for research. Workshop proceedings. Wash-
ington, DC: National Academies Press.
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The National Academy of Sciences is a private, nonprofit, self-perpetuating
society of distinguished scholars engaged in scientific and engineering research,
dedicated to the furtherance of science and technology and to their use for the
general welfare. Upon the authority of the charter granted to it by the Congress
in 1863, the Academy has a mandate that requires it to advise the federal gov-
ernment on scientific and technical matters. Dr. Ralph J. Cicerone is president of
the National Academy of Sciences.
The National Academy of Engineering was established in 1964, under the
charter of the National Academy of Sciences, as a parallel organization of out-
standing engineers. It is autonomous in its administration and in the selection of
its members, sharing with the National Academy of Sciences the responsibility
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Dr. Charles M. Vest is president of the National Academy of Engineering.
The Institute of Medicine was established in 1970 by the National Academy of
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in the examination of policy matters pertaining to the health of the public. The
Institute acts under the responsibility given to the National Academy of Sciences
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its own initiative, to identify issues of medical care, research, and education.
Dr. Harvey V. Fineberg is president of the Institute of Medicine.
The National Research Council was organized by the National Academy of
Sciences in 1916 to associate the broad community of science and technology
with the Academy’s purposes of furthering knowledge and advising the federal
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of both the National Academy of Sciences and the National Academy
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entific and engineering communities. The Council is administered jointly
by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and
Dr. Charles M. Vest are chair and vice chair, respectively, of the National Re-
search Council.
www.national-academies.org
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WORKSHOP ON AUTISM AND THE ENVIRONMENT
CHALLENGES AND OPPORTUNITIES FOR RESEARCH
PLANNING COMMITTEE*
ALAN LESHNER (Chair), American Association for the Advancement
of Science, Washington, D.C.
DUANE ALEXANDER, National Institute of Child Health and Human
Development, Bethesda, Maryland
MARK BLAXILL, SafeMinds, Tyrone, Georgia
LAURA BONO, National Autism Association, Nixa, Missouri
SOPHIA COLAMARINO, Autism Speaks, New York
ERIC FOMBONNE, McGill University, Montreal, Canada
STEVEN HYMAN, Harvard University, Cambridge, Massachusetts
JUDY ILLES, University of British Columbia, Vancouver, Canada
THOMAS INSEL, National Institute of Mental Health, Bethesda,
Maryland
DAVID SCHWARTZ, National Institute of Environmental Health
Sciences, Triangle Park, North Carolina
ALISON TEPPER SINGER, Autism Speaks, New York
SUSAN SWEDO, National Institute of Mental Health, Bethesda,
Maryland
CHRISTIAN ZIMMERMAN, Neuroscience Associates, Boise, Idaho
IOM Staff
BRUCE ALTEVOGT, Project Director
SARAH HANSON, Senior Program Associate
AFRAH ALI, Senior Project Assistant
LORA TAYLOR, Senior Project Assistant
∗
The planning committee was solely responsible for organizing the workshop,
identifying topics, and choosing speakers. They were not responsible for the publication
of the workshop proceedings.
v
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FORUM ON NEUROSCIENCE
AND NERVOUS SYSTEM DISORDERS
ALAN LESHNER (Chair), American Association for the Advancement
of Science, Washington, D.C.
HUDA AKIL, University of Michigan, Ann Arbor
MARC BARLOW, GE Healthcare, Inc., Buck, United Kingdom
DANIEL BURCH, CeNeRx Biopharma, Research Triangle Park, North
Carolina
DENNIS CHOI, Emory University, Atlanta, Georgia
TIMOTHY COETZEE, National Multiple Sclerosis Society, New
York
DAVID COHEN, Columbia University, Society for Neuroscience
representative, New York
RICHARD FRANK, GE Healthcare, Inc., Princeton, New Jersey
RICHARD HODES, National Institute on Aging, Bethesda, Maryland
STEVEN HYMAN, Harvard University, Cambridge, Massachusetts
JUDY ILLES, University of British Columbia, Vancouver, Canada
THOMAS INSEL, National Institute of Mental Health, Bethesda,
Maryland
STORY LANDIS, National Institute of Neurological Disorders and
Stroke, Bethesda, Maryland
TING-KAI LI, National Institute on Alcohol Abuse and Alcoholism,
Bethesda, Maryland
MICHAL OBERDORFER, NIH Neuroscience Blueprint, Bethesda,
Maryland
KATHIE OLSEN, National Science Foundation, Arlington, Virginia
ATUL PANDE, GlaxoSmithKline, Inc., Research Triangle Park, North
Carolina
STEVEN PAUL, Eli Lilly and Company, Indianapolis, Indiana
WILLIAM POTTER, Merck Research Laboratories, Inc., North Wales,
Pennsylvania
PAUL SIEVING, National Eye Institute, Bethesda, Maryland
RAE SILVER, Columbia University, New York, New York
WILLIAM THIES, Alzheimer’s Association, Chicago, Illinois
ROY TWYMAN, Johnson and Johnson Pharmaceutical Research and
Development, Inc., Titusville, New Jersey
NORA VOLKOW, National Institute on Drug Abuse, Bethesda,
Maryland
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FRANK YOCCA, AstraZeneca Pharmaceuticals, Wilmington, Delaware
CHRISTIAN ZIMMERMAN, Neuroscience Associates, Boise, Idaho
STEVIN ZORN, Pfizer Global Research and Development, Ann Arbor,
Michigan
IOM Staff
BRUCE ALTEVOGT, Project Director
SARAH HANSON, Senior Program Associate
LORA TAYLOR, Senior Project Assistant
IOM Anniversary Fellow
LISA BARCELLOS, University of California, Berkeley
vii
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BOARD ON HEALTH SCIENCES POLICY*
FRED H. GAGE (Chair), The Salk Institute for Biological Studies,
La Jolla, California
C. THOMAS CASKEY, University of Texas–Houston Health Science
Center
GAIL H. CASSELL, Eli Lilly and Company, Indianapolis, Indiana
JAMES F. CHILDRESS, University of Virginia, Charlottesville
ELLEN WRIGHT CLAYTON, Vanderbilt University Law School,
Nashville, Tennessee
LINDA C. GIUDICE, University of California, San Francisco
LYNN R. GOLDMAN, Johns Hopkins Bloomberg School of Public
Health, Baltimore, Maryland
LAWRENCE O. GOSTIN, Georgetown University Law Center,
Washington, D.C.
MARTHA N. HILL, Johns Hopkins University School of Nursing,
Baltimore, Maryland
DAVID KORN, Association of American Medical Colleges,
Washington, D.C.
ALAN LESHNER, American Association for the Advancement of
Science, Washington, D.C.
JONATHAN D. MORENO, University of Pennsylvania, Philadelphia
E. ALBERT REECE, University of Maryland School of Medicine,
Baltimore
LINDA ROSENSTOCK, University of California, Los Angeles
MICHAEL J. WELCH, Washington University School of Medicine,
St. Louis, Missouri
OWEN N. WITTE, University of California, Los Angeles
IOM Staff
ANDREW M. POPE, Director
AMY HAAS, Board Assistant
DONNA RANDALL, Financial Associate
*
IOM Boards do not review or approve workshop proceedings. The responsibility for
the content of the proceedings rests with the institution.
viii
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Independent Report Reviewers
These workshop proceedings have been reviewed in draft form by
individuals chosen for their diverse perspectives and technical expertise,
in accordance with procedures approved by the National Research Coun-
cil’s Report Review Committee. The purpose of this independent review
is to provide candid and critical comments that will assist the institution
in making its published workshop proceedings as sound as possible and
to ensure that the proceedings meet institutional standards for objectivity,
evidence, and responsiveness to the study charge. The review comments
and draft manuscript remain confidential to protect the integrity of the
deliberative process. We wish to thank the following individuals for their
review of these proceedings:
Lisa Croen, Kaiser Permanente Northern California, Oakland, CA
Gary W. Goldstein, Kennedy Krieger Institute and Johns Hopkins
University School of Medicine and School of Hygiene and Public
Health, Baltimore, MD
Carlos A. Pardo-Villamizar, Johns Hopkins University School of
Medicine, Baltimore, MD
Lyn Redwood, National Autism Association, Nixa, MO
Although the reviewers listed above have provided many construc-
tive comments and suggestions, they were not asked to endorse the final
draft of the workshop proceedings before their release. The review of
these proceedings was overseen by Dr. Floyd E. Bloom, The Scripps
Research Institute, Professor Emeritus. Appointed by the National Re-
search Council, he was responsible for making certain that an independ-
ent examination of these proceedings was carried out in accordance with
ix
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x INDEPENDENT REPORT REVIEWERS
institutional procedures and that all review comments were carefully
considered. Responsibility for the final content of these workshop pro-
ceedings rests entirely with the institution.
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Preface
Autism spectrum disorders (ASD) constitute a major public health
problem, affecting one in every 150 children and their families.
Unfortunately, there is little understanding of the causes of ASD, and,
despite their broad societal impact, many people believe that the overall
research program for autism is incomplete, particularly as it relates to the
role of environmental factors. One reason for that may well be that there
have been relatively few occasions that have brought together all the key
stakeholders⎯scientists, clinicians, parents of autistic children, patient
advocates, and major sponsors of autism-related research⎯to engage in a
full discussion of autism causality and scientific research priorities.
In response to these challenges, the U.S. Secretary of Health and
Human Services (HHS) asked that the Institute of Medicine’s (IOM)
Forum on Neuroscience and Nervous System Disorders (the Forum) host
a workshop that would bring together the key public and private
stakeholders to discuss potential ways to improve the understanding of
the ways that environmental factors may affect ASD. The Forum
provided an ideal setting to facilitate this request, since it is designed to
provide its members⎯representatives from government, industry,
academia, and patient advocacy organizations⎯with a venue for openly
exchanging information and discussing critical scientific and policy
issues related to nervous system functioning.
Thus, on April 18 and 19, 2007, the Forum hosted a workshop,
“Autism and the Environment: Challenges and Opportunities for
Research” organized by an ad hoc planning committee. This workshop
and its development epitomized what is called by many people “public
engagement” by and with the scientific community. Members of the
broader public were involved in every aspect of the workshop. The
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xii PREFACE
planning committee included not only academic leaders and top
government scientists, including three institute directors from the
National Institutes of Health, but also four members of the autism
advocacy community, three of whom are parents of autistic children.
Many of the workshop participants and invited speakers were members
of the advocacy community. The result was an activity that fully
explored from all angles the range of issues surrounding environmental
factors and ASD, and resulted in an array of new ideas for research
projects and programs. There is no question that this workshop and its
product, this volume, were greatly enriched by this broad participation.
As chair of the Forum and the workshop planning committee, I want
to acknowledge the hard work and dedication displayed by every
member of the planning committee, Forum, and workshop participants. I
would also like to thank the leadership of the IOM and HHS for
providing the Forum with the opportunity to host this very important
event. This workshop was a huge success, both in helping to identify
potential scientific opportunities and in demonstrating the utility of
moving from a strategy of public education about science toward fuller
public engagement, with science where both sides—scientists and
members of the public—listened and learned from each other.
Alan Leshner, Chair
Workshop Planning Committee
Forum on Neuroscience and
Nervous System Disorders
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Foreword
This workshop originated at the suggestion of advocates for patients
with autism. In a meeting with the two of us, they broached the idea of
engaging with the scientific community to help shape a new research
agenda. The Institute of Medicine’s Forum on Neuroscience and Nervous
System Disorders provided a neutral venue to bring together key
stakeholders—scientists, parents of autistic children, other patient
advocates, and major sponsors of autism-related research—specifically
to identify scientific opportunities to further the understanding of
environmental factors that may contribute to autism.
The presentations and discussions at the workshop identified a
number of promising directions for research on the possible role of
different environmental agents in the etiology of autism. Equally
important was the opportunity for dialogue and the exchange of ideas
that took place in an atmosphere of mutual respect and learning.
The payoff will be new directions for scientific research that are
more fully informed by different perspectives on the reality of autism.
From that, everyone stands to gain.
William F. Raub, Ph.D. Harvey V. Fineberg
Science Advisor to the Secretary President
Department of Health and Human Institute of Medicine
Services
xiii
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Contents
INTRODUCTION 1
PROCEEDINGS* 5
Day 1, 5
Day 2, 165
APPENDIXES
A Index of Scientific Opportunities 283
B Workshop Agenda 293
C Registered Workshop Participants 305
D Biographic Sketches of Workshop Planning Committee,
Forum Members, Invited Speakers, and Staff 311
*
Throughout various speaker presentations, speakers may refer to slides that can be
found online at http://www.iom.edu/?id=42481.
xv
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