IACC Strategic Plan

For Autism Spectrum Disorder

2016-2017

Table of Contents | Introduction | Appendices

Appendices

Budget Recommendation

In the preceding chapters, the Interagency Autism Coordinating Committee (IACC) has provided information about recent research progress and services activities as well as 23 new strategic objectives to guide future efforts to better understand and address the needs of people on the autism spectrum across the lifespan and all levels of ability and disability. Under the Autism CARES Act, the IACC is also required to include "proposed budgetary requirements" in the Strategic Plan. The following information provides supporting background information and the IACC budget recommendation for the 2016-2017 Strategic Plan for Autism Spectrum Disorder (ASD).

ASD is a lifelong condition, and as such, it results in significant human costs across the lifespan, not only in healthcare and services costs, but also in lost economic productivity, and reduced individual quality of life. These true costs reflecting lost human potential have recently begun to be described by thorough analyses. One of the most notable studies to date has estimated that the total lifetime cost (including spending and lost productivity) for supporting a person with ASD in the United States averages $2.4 million for ASD with intellectual disability, and $1.4 million for ASD without intellectual disability.¹ Another study estimated that the additional costs of healthcare, education, therapy, services, and caregiver time associated with caring for a child with ASD aged 3 to 17 years is about $17,000 per year.²

The total annual cost of ASD in the United States – including medical, non-medical, economic, and lifetime costs, among others – has been estimated to be at least $236 billion. Of the estimated $236 billion, the cost of supporting children with ASD was at least $61 billion per year, and the annual cost for adults with ASD was at least $175 billion.¹ Another study has suggested that in 2015 the combined medical, non-medical, and lost productivity costs were in the range of $162-$367 billion, or 0.89-2.0% of the US gross domestic product.³ By contrast, the Interagency Autism Coordinating Committee (IACC) portfolio analysis data from 2015 indicates that combined autism research funding among Federal and private sources totaled $343 million – only 0.09-0.21% of the estimated total annual cost of ASD.

While it is evident that more work needs to be done to fully understand the impacts of ASD on our society, there are several ways in which investment in research may be able to effect long-term benefits to individuals and society, as well as cost savings. Research on the biological basis of ASD may lead to the identification of modifiable risk factors that could reduce disability associated with ASD, as well as enable earlier diagnosis and improved interventions. There is already evidence that the costs of research and services that enable delivery of effective early intensive behavioral interventions in childhood can result in cost savings over the lifespan by reducing the need for costly long-term care and support.^4,5 A recent study found that the health-related costs of the Early Start Denver Model were fully recouped after only a few years because children receiving the intervention required fewer other services, such as applied behavior analysis.⁶ In addition, we know that an estimated four out of ten young adults with autism do not transition to a job within the first years after completing high school, and those who do find work are often relegated to part-time or low-wage jobs.⁷ It is therefore also likely that more investment in research to improve adolescent and adult services and supports would improve the economic productivity of individuals over their entire lifetime, while also improving their sense of purpose and quality of life.⁸

Although there was significant growth in autism research funding from 2008 to 2010, and additional Federal funding from the American Recovery and Reinvestment Act (ARRA) provided a welcome boost in 2009 and 2010, ASD research funding levels have since become relatively flat. The loss in momentum has been accelerated by the loss of purchasing power over time due to inflation, resulting in what was effectively 15% of funding that was lost to inflation in 2015 alone (Figure 1). At the same time, never before have there been such promising scientific advances in ASD research, as well as a recognition of the full range of ASD research that will require attention and resources in order to truly improve the lives of individuals across the autism spectrum and lifespan. In the 2016-2017 IACC Strategic Plan, the IACC has identified 23 new strategic objectives that represent areas of significant opportunity in the autism field and with enhanced funding have the potential to address critical needs of the autism community.

With these goals in mind, the IACC considered historical ASD funding trends and projected the budgets that will be necessary to propel ASD research forward and ensure there is meaningful progress on the priorities identified in this newly updated IACC Strategic Plan. Given the tremendous needs of the autism community as well as the promising opportunities for research and services that have been outlined in this Strategic Plan, the IACC recommends doubling the 2015 combined Federal and private autism research budget level of $343 million to $685 million by the year 2020. To accomplish this goal with steady and predictable annual funding increases, a roughly 14.85% increase in the autism research budget would be required each year (Figure 2). It is important to point out that this budget recommendation applies to ASD research budgets only; an IACC analysis of services budgets will be forthcoming in future years. Furthermore, the research funding increases recommended by the IACC would not be sufficient to accomplish all of the research goals identified in this Plan. However, a specific effort to double the autism research budget in 5 years would represent an aggressive, yet realistic jump-start to support research that can significantly move the field forward.

As evidenced by the analysis of the autism research portfolio from 2008 to 2015, an infusion of resources would be wisely and efficiently leveraged, with many areas of autism research well-poised to capitalize on additional investment. While all areas of the autism research portfolio require increases in funding, the areas identified by the IACC that are in particular need of resource growth include:

Research to support development and delivery of new and improved treatments and interventions.
Research to enable development and delivery of evidence-based services.
Research on lifespan issues, especially to understand and address the needs of transition-age youth, young adults, and older adults on the autism spectrum.

In addition, the investment of resources targeting these areas would serve not only to incentivize research on these topics, but also to encourage additional well-trained scientists to specialize in these research areas of significant need.

Figure 1. The history of combined Federal and private autism research funding from 2008 to 2015 in actual (blue) dollars and 2008 constant (orange) dollars shows that after experiencing an initial increase, the ASD research budget became relatively flat and lost purchasing power due to inflation in recent years. The dotted lines indicate funding levels excluding American Recovery and Reinvestment Act (ARRA) stimulus funds, which provided supplementary funding in 2009 and 2010. Inflation effects were calculated using the Biomedical Research and Development Price Index (BRDPI).⁹

Figure 2. The IACC believes doubling the combined Federal and private ASD research budget to $685 million would spark progress on the 23 new Strategic Plan objectives. A steady and predictable path to doubling the 2015 ASD research budget by the year 2020 would require an overall budget increase of about 14.85% each year.

Statement of Duplication of Effort

The Autism CARES Act requires the IACC in its Strategic Plan to provide "Recommendations to ensure that autism spectrum disorder research, services and support activities, to the extent practicable, of the Department of Health and Human Services and of other Federal departments and agencies, are not unnecessarily duplicative."

The 2016-2017 IACC Strategic Plan for ASD offers wide-ranging objectives that are designed to address gaps in ASD research, services, and support activities. The IACC’s intention is that each broad-based objective will be accomplished through multiple projects addressing various aspects of these complex issues, which will be funded by multiple agencies in a coordinated fashion. The IACC is charged with ensuring that coordination, which is achieved by fostering dialogue among Federal agencies and private organizations and engaging their input in the development of plan objectives. The IACC believes that in the case of scientific research, coordinated efforts by multiple public and private agencies to fund different types of projects within the same objective represents cooperation and collaboration, not duplication. In addition, the scientific process requires that studies be independently replicated in order to ensure reproducibility and validate findings. Replication of an experiment or approaching a single problem using different methods can corroborate findings and help researchers distinguish between false leads and important discoveries. Replication also contributes to efficiency in research funding by ensuring the creation of a solid base of validated findings that establish the rationale for later-stage, larger, and potentially more costly research efforts. For these important reasons, replication of research is valuable and should not be considered duplication of effort.

In 2013, the US Government Accountability Office (GAO) released a report entitled Federal Autism Activities: Better Data and More Coordination Needed to Help Avoid the Potential for Unnecessary Duplication (GAO-14-16). The GAO report suggested that the IACC should more fully take advantage of research project data collected to identify opportunities to enhance coordination and prevent duplication. The Autism CARES Act provided more specificity in requiring the IACC to make recommendations about ways in which duplication could be avoided in its Strategic Plan. In the process of preparing this Strategic Plan, the IACC reviewed funded research projects to monitor the extent to which strategic objectives are being accomplished, including changes in funding over time. The IACC explicitly asked each of the seven working groups assisting with preparation of content for the Strategic Plan to identify issues related to duplication and to propose suggestions for avoiding unnecessary duplication.

The IACC did not find any specific instances of duplication among projects in the 2013 portfolio of funded autism research projects, but it noted that there are several instances of the opposite of duplication within the portfolio – gaps in research where too few projects are being supported to answer key questions in the field. Examples include the lifespan area in Question 6, which has received relatively little funding over the years that the Strategic Plan has been in place, resulting in gaps in knowledge about the needs of youth and adults on the autism spectrum and research to develop innovative services and supports.

The Committee also identified a broader issue that provides an opportunity to reduce duplication - the need for closer coordination of large genomic sequencing efforts. Several different research organizations are building genetic databases, and there is concern that different databases may be sequencing the same individuals, which could result in poor stewardship of funds as well as the time and effort of research participants. To reduce duplication of effort in sequencing, the IACC encourages organizations building databases to publicly share their "manifests" which include information on whose DNA is in each database, to use global unique identifiers (GUIDs) to tag data in order to help researchers know when they are working with an individual who already has been sequenced, and to share data by federating with or contributing to the National Database for Autism Research. As technology advances, there may be instances where resequencing the same individual is necessary to expand coverage or gather additional data that were not gathered previously. Ideally, in an environment where data sharing is maximized, researchers will be able to be more efficient with genomics research funding and participation of subjects in research so as to reduce duplication of effort.

Conclusion

Much progress has been made in the autism field since the launch of the first IACC Strategic Plan in 2009. At that time, researchers and other professionals in the field were starting to explore and push toward the possibility of earlier diagnosis and intervention, to understand whether genetics or the environment play a larger role in etiology, to determine why autism was becoming a more common diagnosis, and to understand what were the major challenges of autism in adulthood. Since then, through research and service work in the community, we have learned that: children at risk for ASD can be identified as early as the first year; early intervention does lead to improved outcomes for many children; myriad genetic and environmental factors interact closely resulting in the observed heterogeneity of ASD; multiple factors may be influencing prevalence estimates and more children with milder forms of ASD are being detected; and there are tremendous unmet service needs for adults on the autism spectrum. While research and services activities have moved the field forward in many ways, as represented in the aforementioned examples, they have also brought to light many challenges that still need to be addressed.

Before developing the 2016-2017 IACC Strategic Plan for ASD, the IACC reviewed research progress and analyses of recent data describing the portfolio of ASD research funding in order to assess trends in funding and determine potential areas of opportunity. Overall funding for the autism research portfolio increased, from $222 million in 2008 to $343 million in 2015. Over the years the Committee has monitored the research portfolio, it has not identified any concerns about unnecessary duplication of effort across the portfolio, but it has monitored gaps and used this information to inform the development of the 2016-2017 IACC Strategic Plan.

Strategic investments in the autism portfolio have produced promising scientific advances over recent years. For example, since the last Strategic Plan Update in 2013, research findings have provided several new insights, such as a better picture of existing autism services and service needs, improved identification of genetic risk factors for ASD, and a more accurate representation of the broader ASD community – including girls and women, individuals with intellectual and language disabilities, adolescents, and aging adults. This new knowledge has further illuminated several areas ripe for future efforts and investments – investments that have the potential to improve quality of life while also producing long-term cost savings for individuals, families, and society. The 23 new objectives in this Strategic Plan describe priorities for autism research, services, and supports that reflect the most important opportunities and needs in the current autism landscape. Included in these objectives are a focus on detecting autism earlier and improving access to early intervention; advancing understanding of the biology of autism and co-occurring conditions across the lifespan; integrating genetic and environmental information to understand autism risk; developing a wide array of new treatments and interventions that will address needs across the spectrum and across the lifespan; implementing interventions in community settings and improving access to services; improving transition services and quality of life for adolescents and adults; and enabling data sharing and expanded surveillance.

The IACC continues to coordinate autism research efforts and reaffirms its commitment to our core values: responding with urgency to the needs and challenges presented by ASD, pursuing excellence in research, building a spirit of collaboration, remaining focused on the needs of the community, developing strategic partnerships, and striving for equity. As the IACC looks to the future and considers the outlook for its strategic goals, the Committee believes the autism field is poised to experience significant progress toward addressing the critical needs of the autism community in the coming years.

Budget Recommendation

^1. Buescher AV, Cidav Z, Knapp M, Mandell DS. Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatr. 2014 Aug;168(8):721-8. [PMID: 24911948]

^2. Lavelle TA, Weinstein MC, Newhouse JP, Munir K, Kuhlthau KA, Prosser LA. Economic burden of childhood autism spectrum disorders. Pediatrics. 2014 Mar;133(3):e520-9. [PMID: 24515505]

^3. Leigh JP, Du J. Brief Report: Forecasting the economic burden of autism in 2015 and 2025 in the United States. J Autism Dev Disord. 2015 Dec;45(12):4135-9. [PMID: 26183723]

^4. Peters-Scheffer N, Didden R, Korzilius H, Matson J. Cost comparison of early intensive behavioral intervention and treatment as usual for children with autism spectrum disorder in The Netherlands. Res Dev Disabil. 2012 Nov-Dec;33(6):1763-72. [PMID: 22705454]

^5. Penner M, Rayar M, Bashir N, Roberts SW, Hancock-Howard RL, Coyte PC. Cost-effectiveness analysis comparing pre-diagnosis autism spectrum disorder (ASD)-targeted intervention with Ontario's Autism Intervention Program. J Autism Dev Disord. 2015 Sep;45(9):2833-47. [PMID: 25936527]

^6. Cidav Z, Munson J, Estes A, Dawson G, Rogers S, Mandell D. Cost Offset Associated with Early Start Denver Model for Children with Autism. J Am Acad Child Adolesc Psychiatry. [Available online 4 July 2017: http://www.sciencedirect.com/science/article/pii/S0890856717303131?via%3Dihub]

^7. Roux AM, Shattuck PT, Rast JE, Rava JA, Anderson KA. National Autism Indicators Report: Transition into young adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, 2015. [http://drexel.edu/autismoutcomes/publications-and-reports/publications/National-Autism-Indicators-Report-Transition-to-Adulthood/#sthash.IhJf7Y5P.dpbs]

^8. Järbrink K, McCrone P, Fombonne E, Zandén H, Knapp M. Cost-impact of young adults with high-functioning autistic spectrum disorder. Res Dev Disabil. 2007 Jan-Feb;28(1):94-104. [PMID: 16551499]

^9. https://officeofbudget.od.nih.gov/pdfs/FY18/BRDPI%20Table%20FY%201950%20to%202022_Jan%202017.pdf

About the IACC

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee charged with coordinating Federal activities concerning autism spectrum disorder (ASD) and providing advice to the Secretary of Health and Human Services (HHS) on issues related to autism. The Committee was established by Congress under the Children's Health Act of 2000, reconstituted under the Combating Autism Act (CAA) of 2006, and renewed most recently under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2014.

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, family members of children and adults with ASD, advocates, service providers, and researchers, who represent a variety of perspectives from within the autism community. The IACC membership is composed to ensure that the Committee is equipped to address the wide range of issues and challenges faced by individuals and families affected by autism.

Under the CAA and subsequent authorizations, 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 other Federal departments, Federal agencies, research and advocacy organizations, and 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.

For more information about the IACC, see https://iacc.hhs.gov.

Interagency Autism Coordinating Committee Member Roster

Chair

Joshua Gordon, M.D., Ph.D. Director National Institute of Mental Health National Institutes of Health Rockville, MD

Federal Members

James F. Battey, M.D., Ph.D. Director National Institute on Deafness and Other Communication Disorders National Institutes of Health Bethesda, MD
Diana W. Bianchi, M.D. Director Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
Linda Birnbaum, Ph.D. Director National Institute of Environmental Health Sciences and National Toxicology Program National Institutes of Health Research Triangle Park, NC
Francis S. Collins, M.D., Ph.D. Director National Institutes of Health Bethesda, MD
Ruth Etzel, M.D., Ph.D. Director Office of Children’s Health Protection Environmental Protection Agency 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, MD
Melissa L. Harris Acting Deputy Director Disabled and Elderly Health Programs Group Center for Medicare and CHIP Services Centers for Medicare and Medicaid Services Baltimore, MD
Laura Kavanagh, M.P.P. Director Division of Research, Training and Education Maternal and Child Health Health Resources and Services Administration Rockville, MD
Walter J. Koroshetz, M.D. Deputy Director National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD
Laura Pincock, Pharm.D., M.P.H. Pharmacist Officer Agency for Healthcare Research and Quality Rockville, MD
Marcella Ronyak, Ph.D., L.C.S.W., C.D.P. Deputy Director Division of Behavioral Health Indian Health Service Headquarters
Stuart K. Shapira, M.D., Ph.D. Associate Director Science and Chief Medical Officer National Center on Birth Defects and Developmental Disabilities Atlanta, GA
Melissa Spencer Deputy Commissioner Office of Disability Policy Social Security Administration Baltimore, MD
Larry Wexler, Ed.D. Director Research to Practice Office of Special Education Programs U.S. Department of Education Washington, DC
Nicole Williams, Ph.D. Program Manager Congressionally Directed Medical Research Programs U.S. Department of Defense Frederick, MD

Public Members

David Amaral, Ph.D. Distinguished Professor Department of Psychiatry & Behavioral Science University of California, Davis (UC) Research Director UC Davis MIND Institute University of California – Davis Sacramento, CA
James Ball, Ed.D., B.C.B.A.-D. President and CEO JB Autism Consulting Executive Chair, Board of Directors Autism Society Cranbury, NJ
Samantha Crane, J.D. Legal Director and Director of Public Policy Autistic Self Advocacy Network Washington, DC
Geraldine Dawson, Ph.D. Professor Department of Psychiatry and Behavioral Sciences Duke University Medical Center Director Duke Center for Autism and Brain Development President International Society for Autism Research Durham, NC
Amy Goodman, M.A. Self-Advocate Charles Town, WV
Shannon Haworth Senior Program Manager Association of University Centers on Disabilities Silver Spring, MD
David S. Mandell, Sc.D. Director Center for Mental Health Policy and Services Research Associate Professor Psychiatry and Pediatrics Perelman School of Medicine University of Pennsylvania Philadelphia, PA
Brian Parnell, M.S.W, C.S.W. Administrator, Medicaid Autism Waiver & Community Supports Waiver Division of Services for People with Disabilities Utah Department of Human Services Draper, UT
Kevin Pelphrey, Ph.D. Carbonell Family Professor in Autism and Neurodevelopmental Disorders Professor in the Department of Pharmacology and Physiology and Department of Pediatrics Director Autism and Neurodevelopmental Disorders Institute George Washington University and Children's National Medical Center Washington, DC
Edlyn Peña, Ph.D. Associate Professor, Educational Leadership and Director of Doctoral Studies California Lutheran University Thousand Oaks, CA
Louis Reichardt, Ph.D. Director Simons Foundation Autism Research Initiative New York, NY
Robert H. Ring, Ph.D. Chief Executive Officer Vencerx Therapeutics New York, NY
John Elder Robison Self-Advocate, Parent, and Author Amherst, MA
Alison Tepper Singer, M.B.A. Parent and Family Member Founder and President Autism Science Foundation New York, NY
Julie Lounds Taylor, Ph.D. Assistant Professor of Pediatrics and Special Education Vanderbilt University Investigator, Vanderbilt Kennedy Center Nashville, TN

IACC Alternates

Josie Briggs, M.D. (for Francis S. Collins, M.D., Ph.D.) Director, National Center for Complementary and Integrative Health National Institutes of Health Bethesda, MD
Deborah (Daisy) Christensen, Ph.D. (for Stuart K. Shapira, M.D., Ph.D.) Epidemiologist, Surveillance Team Lead Developmental Disabilities Branch National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta, GA
Judith A. Cooper, Ph.D. (for James F. Battey, M.D., Ph.D.) Deputy Director, National Institute on Deafness and Other Communication Disorders Director, Division of Scientific Programs National Institutes of Health Bethesda, MD
Jennifer Johnson, Ed.D. (for Administration for Community Living) Deputy Director, Administration on Intellectual and Developmental Disabilities Administration for Community Living Washington, DC
Alice Kau, Ph.D. (for Diana W. Bianchi, M.D.) Program Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
Cindy Lawler, Ph.D. (for Linda Birnbaum, Ph.D., D.A.B.T., A.T.S.) Chief, Genes, Environment and Health Branch National Institute of Environmental Health Sciences National Institutes of Health Research Triangle Park, NC
Laura Mamounas, Ph.D. (for Walter Koroshetz, M.D.) Program Director, Neurogenetics Cluster National institute of Neurological Disorders and Stroke Bethesda, MD
Shui-Lin (Stan) Niu, Ph.D. (for Nicole Williams, Ph.D.) Science Officer, Congressionally Directed Medical Research Programs U.S. Department of Defense Frederick, MD
Robyn Schulhof, M.A. (for Laura Kavanagh, M.P.P.) Senior Public Health Analyst, Maternal and Child Health Bureau Health Resources and Services Administration Rockville, MD

Strategic Plan Working Group Members

The Committee would like to thank the following individuals who volunteered their time to assist with the development of the 2016-2017 IACC Strategic Plan for ASD.

Question 1 Working Group

Co-Chairs

Alice Kau, Ph.D* Health Scientist Administrator Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
Ann E. Wagner, Ph.D Program Chief Neurobehavioral Mechanisms of Mental Disorders Branch Division of Developmental Translational Research National Institute of Mental Health National Institutes of Health Bethesda, MD

Participants

Daniel Coury, M.D. Section Chief Behavioral Health Services Section Chief Child Development Center Physician Team Developmental and Behavioral Pediatrics Program Director Developmental/Behavioral Pediatrics Fellowship Nationwide Children’s Hospital Columbus, OH
Shannon Haworth, M.A. Senior Program Manager Association of University Centers on Disabilities Silver Spring, MD
Jennifer Johnson, Ed.D.* Deputy Director Administration on Intellectual and Developmental Disabilities Administration for Community Living Washington, DC
Ami Klin, Ph.D. Director Marcus Autism Center Children's Healthcare of Atlanta Georgia Research Alliance Eminent Scholar Professor & Chief Division of Autism and Related Disorders Department of Pediatrics Emory University School of Medicine Center for Translational Social Neuroscience Emory University Atlanta, GA
Catherine Lord, Ph.D. Professor of Psychology Psychiatry and Founding Director Center for Autism and Developing Brain New York-Presbyterian Hospital Weill Cornell Medical College New York, NY
Sandy Magaña, Ph.D., M.S.W. Professor University of Illinois at Chicago Department of Disability and Human Development Chicago, IL
Karen Pierce, Ph.D. Associate Professor Department of Neurosciences Co-Director Autism Center University of California – San Diego La Jolla, CA
Diana L. Robins, Ph.D. Associate Professor Program Area Leader in Early Detection & Intervention AJ Drexel Autism Institute Drexel University Philadelphia, PA
Angela Scarpa, Ph.D. Founder and Co-Director VT Autism Clinic (VTAC) Director VT Center for Autism Research (VTCAR) Associate Professor Department of Psychology Virginia Tech Blacksburg, VA
Audrey Thurm, Ph.D. Staff Scientist Pediatrics and Developmental Neuroscience National Institute of Mental Health National Institutes of Health Bethesda, MD
Debra Wagler, M.A., MComm. Public Health Analyst Region VIII Maternal and Child Health Bureau Health Resources and Services Administration Rockville, MD
Amy M. Wetherby, Ph.D. Dept. of Clinical Sciences College of Medicine Distinguished Research Professor L.L. Schendel Professor of Communication Science & Disorders Florida State University Tallahassee, FL
Lisa D. Wiggins, Ph.D. Epidemiologist National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta, GA
Nicole Williams, Ph.D.* Program Manager Congressionally Directed Medical Research Programs U.S. Department of Defense Frederick, MD

*indicates IACC Member

Question 2 Working Group

Co-Chairs

Walter Koroshetz, M.D.* Director National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD
Louis Reichardt, Ph.D.* Director Simons Foundation Autism Research Initiative New York, NY

Participants

David Amaral, Ph.D.* Distinguished Professor Department of Psychiatry & Behavioral Sciences Research Director UC Davis MIND Institute University of California – Davis Sacramento, CA
James F. Battey, M.D., Ph.D.* Director National Institute on Deafness and Other Communication Disorders National Institutes of Health Bethesda, MD
Katarzyna Chawarska, Ph.D. Associate Professor Child Study Center and Pediatrics Temple Medical Center New Haven, CT
Graeme Davis, Ph.D. Professor Neuroscience Graduate Program University of California – San Francisco San Francisco, CA
Guoping Feng, Ph.D. Poitras Professor of Neuroscience McGovern Institute for Brain Research Department of Brain and Cognitive Sciences Massachusetts Institute of Technology Director of Model Systems and Neurobiology Stanley Center for Psychiatric Research Broad Institute of MIT and Harvard Cambridge, MA
Heather Cody Hazlett, Ph.D. Assistant Professor The University of North Carolina Chapel Hill, NC
Shafali Spurling Jeste, M.D. Associate Professor in Psychiatry and Neurology University of California – Los Angeles David Geffen School of Medicine Los Angeles, CA
Eric Klann, Ph.D. Professor Center for Neural Science New York University New York, NY
James McPartland, Ph.D. Associate Professor of Child Psychiatry and Psychology Director Yale Developmental Disabilities Clinic Yale Child Study Center New Haven, CT
Christine Nordahl, Ph.D. Assistant Professor Department of Psychiatry and Behavioral Science UC Davis MIND Institute University of California – Davis Sacramento, CA
Kevin Pelphrey, Ph.D.* Carbonell Family Professor in Autism and Neurodevelopmental Disorders Professor in the Department of Pharmacology and Physiology and Department of Pediatrics Director, Autism and Neurodevelopmental Disorders Institute George Washington University and Children's National Medical Center Washington, DC
Elizabeth Redcay, Ph.D. Assistant Professor of Psychology Director Developmental Social Neuroscience Lab University of Maryland College Park, MD
Robert H. Ring, Ph.D.* Chief Executive Officer Vencerx Therapeutics Princeton, NJ
Flora Vaccarino, M.D. Harris Professor Child Study Center and Department of Neurobiology Yale University New Haven, CT
Nicole Williams, Ph.D.* Program Manager Congressionally Directed Medical Research Programs U.S. Department of Defense Frederick, MD

*indicates IACC Member

Question 3 Working Group

Co-Chairs

David Amaral, Ph.D. Distinguished Professor Department of Psychiatry & Behavioral Science Research Director UC Davis MIND Institute University of California - Davis Sacramento, CA
Cindy Lawler, Ph.D. Chief, Genes, Environment and Health Branch National Institute of Environmental Health Sciences National Institutes of Health Research Triangle Park, NC

Participants

Raphael Bernier, Ph.D. Associate Professor Department of Psychiatry & Behavioral Sciences Clinical Director Seattle Children's Autism Center Associate Director Center on Human Development and Disability University of Washington Seattle, WA
Evan Eichler, Ph.D. Professor and HHMI Investigator University of Washington Seattle, WA
Ruth Etzel, M.D., Ph.D.* Director Office of Children’s Health Protection Office of Environmental Protection Agency Environmental Protection Agency Washington, DC
Dani Fallin, Ph.D. Professor Bloomberg School of Public Health John Hopkins University Baltimore, MD
Daniel Geschwind, Ph.D. Senior Associate Dean Associate Vice Chancellor Precision Medicine University of California – Los Angeles Los Angeles, CA
Alycia Halladay, Ph.D. Chief Science Officer Autism Science Foundation New York, NY
Irva Hertz-Picciotto, Ph.D. Director UC Davis Environmental Health Sciences Core Center Professor & Vice Chair for Research Department of Public Health Sciences Director MIND Institute Program in Environmental Epidemiology of Autism and Neurodevelopment Co-Executive Director Project TENDR (Targeting Environmental NeuroDevelopment Risks) University of California – Davis Davis, CA
Elaine Hsiao, Ph.D. Professor Life Science, Integrative Biology and Physiology University of California Los Angeles, CA
Craig Newschaffer, Ph.D. Professor Director A.J. Drexel Autism Institute Philadelphia, PA
Elise Robinson, Ph.D. Affiliated Scientist Broad Institute Cambridge, MA
Stephan Sanders, Ph.D. Assistant Professor Psychiatry UCSF School of Medicine University of California – San Francisco San Francisco, CA
Steve Scherer, Ph.D, F.R.S.C. Director The Centre for Applied Genomics Senior Scientist, Genetics & Genomic Biology The Hospital for Sick Children Director McLaughlin Centre for Molecular Medicine Professor Department of Molecular Genetics University of Toronto Toronto, Canada
Laura A. Schieve, Ph.D. Team Lead Epidemiology Team Developmental Disabilities Branch Division of Congenital and Developmental Disorders National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta, GA
Joan A. Scott, M.S., C.G.C. Deputy Director Division of Services for Children with Special Health Needs Health Resources and Services Administration Maternal and Child Health Bureau Rockville, MD
Alison Tepper Singer, M.B.A.* President Autism Science Foundation New York, NY

*indicates IACC Member

Question 4 Working Group

Chair

Kevin Pelphrey, Ph.D.* Carbonell Family Professor in Autism and Neurodevelopmental Disorders Professor in the Department of Pharmacology and Physiology and Department of Pediatrics Director, Autism and Neurodevelopmental Disorders Institute George Washington University and Children's National Medical Center Washington, DC

Participants

James Ball, Ed.D.* President and CEO JB Autism Consulting Cranbury, NJ
Timothy Buie, M.D. Director Gastroenterology and Nutation at the Laure Center for Autism Massachusetts General Hospital Boston, MA
Samantha Crane, J.D.* Legal Director and Director of Public Policy Autistic Self Advocacy Network Washington, DC
Geraldine Dawson, Ph.D.* Professor Department of Psychiatry and Behavioral Science Duke University School of Medicine Director Duke Center for Autism and Brain Development President International Society for Autism Research Durham, NC
Tiffany R. Farchione, M.D.* Deputy Director Division of Psychiatry Products Center for Drug Evaluation and Research US Food and Drug Administration Silver Spring, MD
Melissa L. Harris* Acting Deputy Director Disabled and Elderly Health Programs Group Center for Medicare and CHIP Services Centers for Medicare and Medicaid Services Baltimore, MD
Connie Kasari, Ph.D. Professor Psychological Studies Education and Psychiatry University of California - Los Angeles Los Angeles, CA
Elisabeth Kato* Medical Officer Agency for Healthcare Research and Quality Rockville, MD
Alice Kau, Ph.D* Health Scientist Administrator Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
Christy Kavulic Associate Division Director Early Childhood Team Office of Special Education Program U.S. Department of Education Washington, DC
Alex Kolevzon, M.D. Professor of Psychiatry and Pediatrics Director Child and Adolescent Psychiatry Clinical Director Seaver Autism Center Icahn School of Medicine at Mounttn Sinai New York, NY
Elizabeth Laugeson, Ph.D. Director Early Childhood Clubhouse Program Clinical Instructor Center for Autism Research and Treatment David Geffen School of Medicine Los Angeles, CA
Alexander Leonessa National Science Foundation Arlington, Virginia
Beth Malow, M.D. Professor Vanderbilt Department of Neurology Vanderbilt University Medical Center Nashville, TN
Nancy J. Minshew, M.D. Endowed Chair in Autism Research Professor of Psychiatry and Neurology Department of Psychiatry University of Pittsburgh Pittsburgh, PA
Samuel L. Odom, Ph.D. Director Frank Porter Graham Child Development Institute University of North Carolina at Chapel Hill Chapel Hill, NC
Louis Reichardt, Ph.D.* Director Simons Foundation Autism Research Initiative New York, NY
Robert H. Ring, Ph.D.* Chief Executive Officer Vencerx Therapeutics Princeton, NJ
Mustafa Sahin, M.D., Ph.D. Associate Professor of Neurology Harvard Medical School Assistant in Neurology Boston Children’s Hospital Boston, MA
Frederick Shic, Ph.D. Assistant Professor Child Study Center and Computer Science Director Technology and Innovation Laboratory Associate Director Yale Early Social Cognition Lab Yale Child Study Center Yale School of Medicine New Haven, CT
Phillip S. Strain, Ph.D. Director PELE Center/Professor ED. Psych & Early Childhood SPED University of Colorado – Denver Denver, CO
Denis G. Sukhodolsky, Ph.D. Assistant Professor Child Study Center Yale School of Medicine New Haven, CT
Zachary Warren, Ph.D. Associate Professor of Pediatrics, Psychiatry, & Special Education Executive Director Treatment and Research Institute for Autism Spectrum Disorders Director Autism Clinical Services Department of Pediatrics and Vanderbilt Kennedy Center Nashville, TN

*indicates IACC Member

Question 5 Working Group

Co-Chairs

Shannon Haworth, M.A. Senior Program Manager Association of University Centers on Disabilities Silver Spring, MD
David S. Mandell, Sc.D. Director Center for Mental Health Policy and Services Research Associate Professor Psychiatry and Pediatrics Perelman School of Medicine University of Pennsylvania Philadelphia, PA

Participants

Lauren Brookman-Frazee, Ph.D. Associate Professor Department of Psychiatry University of California – San Diego San Diego, CA
Robert Cimera, Ph.D. Professor Lifespan Development & Educational Science Kent State University Kent, OH
Samantha Crane, J.D.* Legal Director and Director of Public Policy Autistic Self Advocacy Network Washington, DC
Daniel Davis Health Insurance Specialist Center for Integrated Programs Administration for Community Living U.S. Department of Health and Human Services Washington, DC
Melissa L. Harris* Acting Deputy Director Disabled and Elderly Health Programs Group Center for Medicare and CHIP Services Centers for Medicare and Medicaid Services Baltimore, MD
Peter F. Gerhardt, Ed.D. President Peter Gerhardt Associates, LLC New York, NY
Lisa Goring Executive Vice President Programs and Services Autism Speaks New York, NY
Laura Kavanagh, M.P.P.* Deputy Associate Administrator Maternal and Child Health Bureau Health Resources and Services Administration Rockville, MD
Leticia Manning, M.P.H. Lieutenant Commander United States Public Health Service Maternal and Child Health Bureau Division of Services for Children with Special Health Needs Health Resources and Services Administration Rockville, MD
Cathy Pratt, Ph.D., BCBA-D Director Indiana Resource Center for Autism Indiana University Bloomington Bloomington, IN
Anne Roux, M.P.H. Research Scientist Life Course Outcomes Research Program A.J. Drexel Autism Institute Drexel University Philadelphia, PA
Aubyn Stahmer, Ph.D. Associate Professor Psychiatry and Behavioral Sciences UC Davis MIND Institute University of California – Davis Sacramento, CA
Jane A. Tilly Administration for Community Living Administration on Aging U.S. Department of Health and Human Services Washington, DC
Larry Wexler, Ed.D.* Director Research to Practice Division Office of Special Education Programs U.S. Department of Education Washington, DC
Juliann Woods, Ph.D., CCC-SLP Professor and Associate Dean Research School of Communication Science and Disorders Florida State University Tallahassee, FL

*indicates IACC Member

Question 6 Working Group

Chair

Julie Lounds Taylor, Ph.D. Assistant Professor of Pediatrics and Special Education Vanderbilt University Investigator Vanderbilt Kennedy Center Nashville, TN

Participants

Scott Badesch President/Chief Executive Officer Autism Society Bethesda, MD
Vanessa Hus Bal, Ph.D. Postdoctoral Scholar Department of Psychiatry University of California - San Francisco San Francisco, CA
Somer L. Bishop, Ph.D. Assistant Professor Department of Psychiatry University of California - San Francisco San Francisco, CA
Leslie J. Caplan, Ph.D. Rehabilitation Program Specialist National Institute on Disability, Independent Living, and Rehabilitation Research Administration for Community Living U.S. Department of Health and Human Services Washington, DC
Nancy Cheak-Zamora, Ph.D. Assistant Professor Department of Health Science University of Missouri School of Health Professions Columbia, MO
Samantha Crane, J.D.* Legal Director and Director of Public Policy Autistic Self Advocacy Network Washington, DC
Leann Smith DaWalt, Ph.D. Senior Scientist Waisman Center University of Wisconsin – Madison Madison, WI
Amy Goodman, M.A.* Self-Advocate
Laura Grofer Klinger, Ph.D. Director TEACCH Autism Program Associate Professor of Psychiatry University of North Carolina – Chapel Hill Chapel Hill, NC
Kevin Pelphrey, Ph.D.* Carbonell Family Professor in Autism and Neurodevelopmental Disorders Professor in the Department of Pharmacology and Physiology and Department of Pediatrics Director, Autism and Neurodevelopmental Disorders Institute George Washington University and Children's National Medical Center Washington, DC
Edlyn Peña, Ph.D.* Associate Professor Educational Leadership Director of Doctoral Studies California Lutheran University Thousand Oaks, CA
JaLynn Prince President and Founder Madison House Autism Foundation Rockville, MD
Robyn Schulhof, M.A.* Senior Public Health Analyst Maternal and Child Health Bureau Health Resources and Services Administration Rockville, MD
Paul Shattuck, Ph.D. Associate Professor Leader – Life Course Outcomes Research Program A.J. Drexel Autism Institute Philadelphia, PA
Alison Tepper Singer, M.B.A.* President Autism Science Foundation New York, NY
Susan White, Ph.D. Faculty Department of Psychology Core Faculty Clinical Science Co-Director Virginia Tech Autism Clinic Virginia Tech Blacksburg, VA

*indicates IACC Member

Question 7 Working Group

Chair

Alison Tepper Singer, M.B.A. President Autism Science Foundation Scarsdale, NY

Participants

Deborah (Daisy) Christensen, Ph.D.* Epidemiologist Surveillance Team Lead Developmental Disabilities Branch National Center on Birth Defect and Developmental Disabilities Centers for Disease Control and Prevention Atlanta, GA
Samantha Crane, J.D.* Legal Director and Director of Public Policy Autistic Self Advocacy Network Washington, DC
Adriana DiMartino, Ph.D. Assistant Professor Department of Child and Adolescent Psychiatry New York University School of Medicine New York, NY
Maureen Durkin, Ph.D., DrPH Professor Population Health Sciences and Pediatrics University of Wisconsin School of Medicine and Public Health Professor Population Health Sciences and Pediatrics Vice-Chair Department of Population Health Sciences Director Population Health Graduate Program University of Wisconsin School of Medicine and Public Health Madison, WI
Michelle Freund, Ph.D. Project Officer National Institute of Mental Health National institute of Health Rockville, MD
Dan Hall Manager National Database for Autism Research National Institute of Mental Health National Institutes of Health Rockville, MD
Robin L. Harwood, Ph.D. Health Scientist Division of Research Office of Epidemiology and Research Health Resources and Services Administration Maternal and Child Health Bureau Rockville, MD
Paul Lipkin, M.D. Director Medical Informatics Kennedy Krieger Institute Director Interactive Autism Network Kennedy Krieger Institute Associate Professor of Pediatrics Johns Hopkins Medicine Baltimore, MD
David S. Mandell, Sc.D.* Director Center for Mental Health Policy and Services Research Associate Professor Psychiatry and Pediatrics Perelman School of Medicine University of Pennsylvania Philadelphia, PA
Gretchen Navidi Program Coordination Manager Office of Technology Development and Coordination Office of the NIMH Director National Institute of Mental Health National Institutes of Health Bethesda, MD
Jessica Rast, M.P.H. Research Associate Life Course Outcomes Research Program A.J. Drexel Autism Institute Drexel University Philadelphia, PA
Catherine Rice, Ph.D. Professor Psychiatry and Behavioral Sciences Director, Emory Autism Center Emory University School of Medicine Atlanta, GA
Robert H. Ring, Ph.D.* Chief Executive Officer Vencerx Therapeutics Princeton, NJ
Michael Rosanoff, M.P.H. Director Public Health Research Autism Speaks New York, NY
Andy Shih, Ph.D. Senior VP Scientific Affairs Autism Speaks New York, NY

Office of Autism Research Coordination (OARC)

National Institute of Mental Health, National Institutes of Health

Susan Daniels, Ph.D. Director

Oni Celestin, Ph.D. Health Science Policy Analyst
Rebecca Martin, M.P.H. Public Health Analyst
Angelice Mitrakas, B.A. Management Analyst
Karen Mowrer, Ph.D. Health Science Policy Analyst
Julianna Rava, M.P.H. Health Science Policy Analyst
Jeffrey Wiegand, B.S. Web Development Manager

Email: IACCPublicInquiries@mail.nih.gov

Website: https://iacc.hhs.gov/

Cover Design
Medical Arts Branch, Office of Research Services, National Institutes of Health

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). 2016-2017 Interagency Autism Coordinating Committee Strategic Plan For Autism Spectrum Disorder. October 2017. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: https://iacc.hhs.gov/publications/strategic-plan/2017/.

Question 7

Appendices