IACC Strategic Plan
For Autism Spectrum Disorder Research
2012 Update
Conclusion
The IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research, first published in 2009, has now been updated in 2010, 2011, and 2012. The changes in "What do we know?" and "What do we need?" that are described in the 2012 IACC Strategic Plan Update are intended to recap recent research accomplishments and provide further guidance to researchers, research funders, and other members of the community about the opportunities for progress in each of the seven question areas of the Plan. The 2012 IACC Strategic Plan Update does not address the need for an increased focus on services provision issues, which has been discussed at IACC meetings and is an area of intense interest among several IACC members as well as some of the content experts who participated in the process of developing the 2012 IACC Strategic Plan Update. In the coming year, the Committee looks forward to an opportunity to delve more deeply into this and other issues that emerged as gaps during the update process.
The IACC wishes to express its appreciation to the many people who assisted in developing the 2012 IACC Strategic Plan Update. A list of these external experts is provided at the end of this document. In addition to the experts from the advocacy, research, and services communities who generously volunteered their time to work with the IACC on this effort, the Committee also received input from many members of the public who sent in ideas or provided written recommendations for consideration. While the final 2012 IACC Strategic Plan Update could not reflect every concept or concern that was raised during the updating process, this document was assembled by the IACC with the intent of capturing the current state of the science with respect to autism research, as well as a sense of where the newest opportunities and challenges lie in this effort to meet the evolving needs of people with ASD and their families.
About the IACC
The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee charged with coordinating all activities concerning autism spectrum disorder (ASD) within the U.S. Department of Health and Human Services (HHS) and providing advice to the Secretary of HHS on issues related to autism. It was established by Congress under the Children's Health Act of 2000, reconstituted under the Combating Autism Act (CAA) of 2006 (PDF – 49 KB), and renewed under the Combating Autism Reauthorization Act of 2011.
Membership of the Committee includes a wide array of Federal agencies involved in ASD research and services, as well as public stakeholders, including self-advocates, parents of children and adults with ASD, advocates, service providers, and researchers, who represent a variety of perspectives from within the autism community. This makeup of the IACC membership is designed to ensure that the Committee is equipped to address the wide range of issues and challenges faced by families and individuals affected by autism.
Under the CAA, the IACC is required to (1) develop and annually update a strategic plan for ASD research, (2) develop and annually update a summary of advances in ASD research, and (3) monitor Federal activities related to ASD.
Through these and other activities, the IACC provides guidance to HHS and partners with the broader autism community to accelerate research and enhance services with the goal of profoundly improving the lives of people with ASD and their families.
IACC Member Roster
Chair
- Thomas R. Insel, M.D.
Director
National Institute of Mental Health
National Institutes of Health
Bethesda, Maryland
Federal Members
- James F. Battey, M.D., Ph.D.
Director
National Institute on Deafness and Other
Communication Disorders
National Institutes of Health
Bethesda, Maryland
- Linda Birnbaum, Ph.D.
Director
National Institute of Environmental Health
Sciences and National Toxicology Program
National Institutes of Health
Research Triangle Park, North Carolina
- Coleen Boyle, Ph.D., M.S. Hyg.
Director
National Center on Birth Defects and
Developmental Disabilities
Centers for Disease Control and Prevention
Atlanta, Georgia
- Francis S. Collins, M.D., Ph.D.
Director
National Institutes of Health
Bethesda, Maryland
- Denise Dougherty, Ph.D.
Senior Advisor for Child Health
and Quality Improvement
Agency for Healthcare Research and Quality
Washington, DC
- Tiffany R. Farchione, M.D.
Medical Officer
Division of Psychiatry Products
Center for Drug Evaluation and Research
U.S. Food and Drug Administration
Silver Spring, Maryland
- Alan E. Guttmacher, M.D.
Director
Eunice Kennedy Shriver National Institute
of Child Health and Human Development
National Institutes of Health
Bethesda, Maryland
- Laura Kavanagh, M.P.P.
Director
Division of Research, Training and Education
Maternal and Child Health
Health Resources and Service Administration
Rockville, Maryland
- Donna M. Kimbark, Ph.D.
Program Manager
Congressionally Directed Medical
Research Programs
U.S. Department of Defense
Frederick, Maryland
- Walter J. Koroshetz, M.D.
Deputy Director
National Institute of Neurological Disorders
and Stroke
National Institutes of Health
Bethesda, Maryland
- Sharon Lewis
Commissioner
Administration on Intellectual and
Developmental Disabilities
Administration for Community Living
Washington, DC
- John P. O'Brien, M.A.
Senior Policy Analyst
Disabled and Elderly Health Programs Group
Centers for Medicare & Medicaid Services
Baltimore, Maryland
- Michael K. Yudin
Acting Assistant Secretary for Special Education and
Rehabilitative Services
Office of Special Education and Rehabiliative Services
U.S. Department of Education
Washington, DC
Public Members
- Idil Abdull
Parent
Co-Founder
Somali American Autism Foundation
Minneapolis, Minnesota
- James Ball, Ed.D., B.C.B.A.-D.
President and CEO
JB Autism Consulting
Executive Chair, Board of Directors
Autism Society
Cranbury, New Jersey
- Anshu Batra, M.D.
Parent
Developmental Pediatrician
Our Special Kids
Los Angeles, California
- Noah Britton, M.A.
Self Advocate
Adjunct Professor of Psychology
Bunker Hill Community College
Salem, Massachusetts
- Sally Burton-Hoyle, Ed.D.
Family Member
Associate Professor
Department of Special Education
Eastern Michigan University
Ypsilanti, Michigan
- Matthew J. Carey, Ph.D.
Parent
Contributor - Left Brain Right Brain
San Jose, California
- Dennis W. Choi, M.D., Ph.D.
Chair
Department of Neurology
Director
Neurosciences Institute
Stony Brook University
Stony Brook, New York
- Jose F. Cordero, M.D., M.P.H.
Dean
University of Puerto Rico
Graduate School of Public Health
Rio Piedras, Puerto Rico
- Jan M. Crandy
Parent
Case Manager
Nevada State Autism Treatment
Assistance Program Chair
Nevada Commission on Autism
Spectrum Disorders
Las Vegas, Nevada
- Geraldine Dawson, Ph.D.
Chief Science Officer
Autism Speaks
Professor, Department of Psychiatry
University of North Carolina at Chapel Hill
Carolina Institute for Developmental Disabilities
Carrboro, North Carolina
- David S. Mandell, Sc.D.
Associate Professor
Department of Psychiatry and Pediatrics
University of Pennsylvania
School of Medicine
Philadelphia, Pennsylvania
- Lyn Redwood, R.N., M.S.N.
Parent
Co-Founder, Vice President
and Board Member
Coalition for SafeMinds
Tyrone, Georgia
- Scott Michael Robertson, M.H.C.I.
Self Advocate
President and Vice Chair of Development
Autistic Self Advocacy Network
University Park, Pennsylvania
- John Elder Robison
Self Advocate, Parent and Author
Amherst, Massachusetts
- Alison Tepper Singer, M.B.A.
Parent and Family Member
Founder and President
Autism Science Foundation
New York, New York
Strategic Plan Update External Planning Group Members
The Committee would like to thank the following external experts who volunteered their time to assist with the development of the 2012 IACC Strategic Plan Update.
- David G. Amaral, Ph.D.
Distinguished Professor, Department of
Psychiatry and Behavioral Sciences
Director of Research
MIND Institute
University of California, Davis
Sacramento, California - Daniel Coury, M.D.
Professor, Pediatrics and Psychiatry
College of Medicine
The Ohio State University
Chief, Developmental and Behavioral Pediatrics
Administrative Medical Director for Behavioral
Health
Nationwide Children's Hospital
Columbus, Ohio - Elisabeth Dykens, Ph.D.
Director
Vanderbilt Kennedy Center
Co-Director, University Center for Excellence in
Developmental Disabilities
Vanderbilt Kennedy Center
Professor, Psychology & Human Development,
Psychiatry, and Pediatrics
Vanderbilt University
Nashville, Tennessee - Peter Gerhardt, Ed.D.
Director of Education
McCarton Upper School
New York, New York - Tawara D. Goode, M.A.
Assistant Professor, Department of Pediatrics
Georgetown University Medical Center
Washington, D.C. - Matthew S. Goodwin, Ph.D., M.A.
Assistant Professor
Northeastern University
Visiting Assistant Professor
MIT Media Lab
Boston, Massachusetts - Lisa Goring
Vice President
Family Services
Autism Speaks - Dan Hall, M.B.A.
Manager
National Database for Autism Research
Rockville, Maryland - Melissa Harris
Director, Division of Benefits and Coverage Disabled and Elderly Health Programs Group
Center for Medicaid
Centers for Medicare & Medicaid Services
Baltimore, Maryland - Connie Kasari, Ph.D.
Professor of Psychological Studies in Education
and Psychiatry
University of California, Los Angeles
Los Angeles, California - Ami Klin, Ph.D.
Chief, Autism and Related Disorders
Marcus Autism Center
Director, Division of Autism and Related
Developmental Disabilities
Department of Pediatrics
Emory University
Atlanta, Georgia - Paul A. Law, M.D., M.P.H.
Director
Medical Informatics
The Kennedy Krieger Institute
Baltimore, Maryland - Roger Little, Ph.D., M.Sc.
Senior Advisor
Office of Science Policy, Planning and
Communications
National Institute of Mental Health
Rockville, Maryland - Catherine Lord, Ph.D.
Director
Institute for Brain Development
New York Presbyterian Hospital
New York, New York - Beth Malow, M.D., M.S.
Professor of Neurology and Pediatrics
Chair, Cognitive Childhood Development
Vanderbilt Kennedy Center
Nashville, Tennessee - Craig J. Newschaffer, Ph.D.
Director, AJ Drexel Autism Institute
Professor, Department of Epidemiology and
Biostatistics
Drexel University School of Public Health
Philadelphia, Pennsylvania - Christina Nicolaidis, M.D., M.P.H.
Professor and Senior Scholar, Social
Determinants of Health
Portland State University
Associate Professor, Medicine and Public Health
& Preventative Medicine
Oregon Health & Science University
Portland, Oregon - Valerie Paradiz, Ph.D.
Consultant
Educational Program Developer
San Diego, California - Carlos A. Pardo-Villamizar, M.D.
Associate Professor, Neurology and Pathology
Johns Hopkins University School of Medicine
Baltimore, Maryland - Kevin Pelphrey, Ph.D.
Associate Professor
Child Study Center and Department of
Psychology
Yale University
New Haven, Connecticut - James M. Perrin, M.D.
Professor, Department of Pediatrics
Director, MGH Center for Child and Adolescent
Health Policy
Massachusetts General Hospital
Harvard Medical School
Boston, Massachusetts - Isaac N. Pessah, Ph.D.
Professor and Chair, Department of Molecular
Biosciences
Director
Children's Center for Environmental Health
MIND Institute
University of California, Davis
Sacramento, California - Kathryn Poisal
Center for Medicaid, CHIP, and Survey &
Certification (CMCS)
Disabled and Elderly Health Programs Group
Division of Long Term Services and Supports
Centers for Medicare & Medicaid Services
Baltimore, Maryland - Catherine Rice, Ph.D.
Behavioral Scientist
National Center on Birth Defects and
Developmental Disabilities
Centers for Disease Control and Prevention
Atlanta, Georgia - Linmarie Sikich, M.D.
Associate Professor and Director
Adolescent and School-age Psychiatric
Intervention Research Program
University of North Carolina at Chapel Hill
School of Medicine
Chapel Hill, North Carolina - Paul T. Shattuck, Ph.D.
Assistant Professor
Brown School of Social Work
Washington University in St. Louis
St. Louis, Missouri - Lisa Simpson, M.B., B.Ch., M.P.H., FAAP
President and Chief Executive Officer
AcademyHealth
Washington, DC - Tristram Smith, Ph.D.
Professor of Pediatrics
University of Rochester Medical Center
Rochester, New York - Aubyn C. Stahmer, Ph.D.
Research Scientist
University of California, San Diego
San Diego, California - Matthew State, M.D., Ph.D.
Professor of Child Psychiatry & Psychiatry
Professor of Genetics
Co-Director, Yale Program on Neurogenetics
Deputy Chairman for Research, Department of
Psychiatry
Yale University School of Medicine
New Haven, Connecticut - Bonnie Strickland, Ph.D.
Director, Division of Services for Children with
Special Healthcare Needs
Maternal and Child Health Bureau
Health Resources and Services Administration
Rockville, Maryland - Ann Turnbull, Ph.D.
Distinguished Professor
Special Education Co-director
Beach Center on Disability
Department of Special Education
University of Kansas
Lawrence, Kansas - Lorri Shealy Unumb, J.D.
Vice President
State Government Affairs
Autism Speaks
New York, New York - Zachary E. Warren, Ph.D.
Associate Professor of Pediatrics and Psychiatry
Vanderbilt University Medical Center
Director, Treatment and Research Institute for
Autism Spectrum Disorders (TRIAD)
Vanderbilt Kennedy Center
Nashville, Tennessee - Diedre Washington-Jones, M.P.H., CHES
Senior Public Health Analyst/Program Director
Division of Services for Children with Special
Health Needs
Maternal and Child Health Bureau
Rockville, Maryland - Larry Wexler, Ed.D.
Division Director
Research to Practice Division
Office of Special Education and Rehabiliative
Services
Department of Education
Washington, DC - Jeffrey Wood, Ph.D.
Associate Professor
Division of Child Psychiatry and Division of
Psychological Studies in Education
University of California, Los Angeles
Los Angeles, California
Office of Autism Research Coordination (OARC) Staff List
-
Susan Daniels, Ph.D.
Acting Director - Elizabeth Baden, Ph.D.
Policy Analyst - Cyrus Davani, B.A.
Scientific Program Analyst - Nicole Jones, B.B.A.
Senior Web Developer - Miguelina Perez
Management Analyst - Sarah Rhodes, Ph.D.
Policy Analyst - Hope Sipocz, B.A.
Science Writer/Editor
Copyright Information
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.
Suggested Citation
Interagency Autism Coordinating Committee (IACC). IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research —2012 Update. December 2012. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: http://iacc.hhs.gov/strategic-plan/2012/index.shtml.
