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Strategic Plan Cover
IACC Strategic Plan
For Autism Spectrum Disorder Research
2013 Update
Appendices

Conclusion

Progress

The 2013 IACC Strategic Plan Update details the progress that has been made on the scientific questions and investment recommendations of the IACC Strategic Plan. Of the 78 specific IACC Strategic Plan objectives, 73 have fully met or partially met the recommended budget. Overall, approximately $1.5 billion in public and private research funding has been dedicated to ASD projects over the past 5 years, with an average funding increase of 39 percent across the IACC Strategic Plan Questions for the period following its initial release in 2009. This increased investment has brought forth a range of scientific advances in all areas of the IACC Strategic Plan.

The state of the science has dramatically changed in the ASD field since 2008, reflected in a significant increase over time in the number of journal publications related to ASD research.1 While biological differences in individuals with ASD were hypothesized earlier, now there are data demonstrating specific changes in the genome and epigenome,2–20 gene expression,21, 22 cell structure and function,23–29 brain connectivity,30–32 and behavior33–35 that have been linked to the causes and underlying biology of ASD. Over the past 5 years, genetic studies have revealed that genetic variation ranging from changes in single bases to alteration of large regions of DNA or even extra chromosomes can contribute to ASD risk, and that both inherited and spontaneous mutations can play a role.2–4 Several environmental factors have emerged as potential contributors to ASD risk in the past 5 years, including: prenatal maternal infection,36, 37 preterm birth,38–41 advanced maternal and paternal age at conception,42–48 short inter-pregnancy interval,49, 50 as well as some data suggesting that exposure to air pollution,51–56 phthalates57–59 and pesticides60–62 during pregnancy may also increase risk. Vitamin intake, particularly folic acid,63–65 during the pre-conception period has been identified as a possible protective factor against ASD risk, while both the genetic and environmental data now point to the early months of gestation as a critical period for the development of ASD.

Advances in screening tools such as the Modified Checklist for Autism in Toddlers (M-CHAT) and the Infant-Toddler checklist, with an emphasis on early and repeated screenings, now make it possible to set a realistic future goal to identify 95 percent of children with ASD before the age of 24 months.66–69 New technologies to detect differences in eye-tracking patterns, and new research on white matter tract development and posture control in infants also introduce the potential to detect ASD as early as 2-6 months of age.30, 33–35 This ability for early ASD detection, however, will depend on large community-based validation studies of screening in the general population and only will become clinically useful if efficient, cost effective tools can be designed around these new capabilities. It will also be critical to ensure that following a positive early screening result, parents readily seek diagnosis and intervention, and that there are effective early interventions available. Recent clinical trials of behavioral interventions have demonstrated their positive impact on outcomes and have begun to provide the evidence base needed to support the widespread use of these advances in the community.70–75 However, more needs to be done to make these therapies affordable and scalable to large and diverse community settings, and efforts are needed to increase the number of children who progress from identification in early screens to diagnosis and early intervention. Disparities in access to diagnosis and treatment based on resources, ethnicity, and gender remain another significant challenge.

Studies of animals that carry gene mutations that, in humans, cause syndromic forms of autism have demonstrated that in animals symptoms can be reversed both in early development and in adulthood.76, 77 While these studies may not directly translate to humans, they indicate that some symptoms of autism may be amenable to treatment even later in life, they identify possible drug targets, and they provide a pathway for developing treatments for the core symptoms of ASD. Clinical trials in toddlers have demonstrated the value of early behavioral intervention, with gains in behavior and function as well as the first demonstration of measurable changes in brain activity in response to intervention.70–75, 78 Several trials are currently underway, ranging from exploratory trials of novel interventions to tests of treatments that are already in current use in the community. Over the past 5 years, a large clinical network has been developed, several pharmaceutical companies have become engaged in ASD research, and new technologies have emerged that may prove transformative. This field still requires standardized, sensitive outcome measures and biomarkers that can both stratify the heterogeneous ASD population and serve as rapid indicators of clinical response. 

Recent studies have revealed the tremendous service needs within the community, with data showing that young adults transitioning out of the educational system frequently lose their services access and often have limited opportunities for employment and independent housing.79–82 While more data are required on the needs of adults with ASD so that services can be more appropriately targeted, there is already an opportunity to collect data on the effectiveness of current services being delivered in the community through projects such as federally-funded state demonstration projects. In some cases, it may also be possible to do comparative studies that could begin to make improvements in services for adults in the near term.

One of the most encouraging signs of progress has been the expansion of research infrastructure over the past 5 years, helping the scientific community embrace a culture of data integration and sharing. Several large scale government-funded research centers, privately funded efforts, and some public-private collaborative projects have been built in the past 5 years. The National Database for Autism Research (NDAR), an NIH-funded hub that stores and shares aggregate data, from exomes to images, has grown to include over 70,000 human subjects. Efforts such as the government-funded NIH Neurobiobank and the privately-funded Autism BrainNet Go to website disclaimer have been established to try to expand the supply of available brain and other tissue samples for ASD and brain disorder research. In addition, the Interactive Autism Network (IAN) Go to website disclaimer and Autism Genetic Resource Exchange (AGRE)Go to website disclaimer give families the opportunity to share data and participate in new models of more rapid, interactive clinical trials, expanding the possibilities for future research.

Relative to many other areas of biomedical research, ASD science is still a young field. While the past 5 years have seen rapid growth and substantial scientific progress, the Committee recognizes the large gap that still remains between advances made in research settings and practical benefits that are ready to be delivered to individuals and families living with ASD today. We remain far from the overall intention of the IACC Strategic Plan to foster research that will yield tangible improvements in quality of life for people with ASD across all settings and communities. An intensified effort will be needed to ensure that recent promising discoveries are rapidly translated into clinical practice and services that will improve quality of life for individuals with ASD.

In conducting this review, the Committee recognized several core needs that spanned across multiple areas on the research portfolio:

  • Scaling Up: Many of the screening tools, interventions, and services approaches that have been developed to date are effective in research settings and when tested in small groups. In order for these tools and approaches to have the potential to impact the community, they must be scaled up to be useable in the full range of community settings. In addition, providers and families need to be educated and empowered to disseminate and implement research findings in the community, ensuring the highest quality of services.
  • Population Inclusion: Screening tools are frequently tested in the siblings of children with ASD because they are at elevated risk of developmental concerns, including ASD. In order to ensure that screening and diagnostic tools are developed and validated for use in broader populations, it will be important to include children in the general population (with no family history of ASD), adolescents, and adults in future screening and diagnostic tool development research. For other studies, many participants have mild disability and are in areas with good access to medical care. It is vital that participants across the full range of ASD disability, across all periods of the lifespan, and from underserved populations are included so that tools developed will have broad applicability.
  • Practice to Research: In the arenas of interventions and services, there are already many practices that are being utilized within the community, and there are interactive virtual networks of individuals and families available, providing an opportunity to study the use of these interventions and services in a real-world setting. More academic and community partnerships and new clinical trial approaches are needed to leverage these resources and gain valuable insight into what approaches are effective in community settings. The new Congressionally-established Patient Centered Outcomes Research Institute (PCORI)Go to website disclaimer may be an opportunity for such studies.
  • Addressing heterogeneity: The heterogeneity of ASD, which is a spectrum composed of different conditions sharing some core features but resulting from different underlying biology and causes, and presenting with varying levels of severity in several different domains, remains a challenge. The development of predictive and early efficacy biomarkers that can identify subtypes of ASD that will respond to different treatments will be essential to move to a precision medicine approach for ASD.
  • Leveraging Existing Infrastructure: In the past 5 years, both public and private resources have been invested in establishing infrastructure for surveillance, clinical research, environmental studies, and sample and data sharing. To fully utilize these resources and gain the maximum value from these investments, agencies and organizations should consider building new studies onto these existing resources.
  • Applying Strategies from Other Fields: Scientific disciplines relevant to autism are making considerable advances in the study of other health conditions. Over the past 5 years, there has been much success in learning about ASD biology from research on related disorders. Similarly, ASD researchers may be able to adopt successful strategies from other disease fields to solve issues such as how to detect trace chemicals in small biosamples effectively or how to best reach underserved populations with tools and services. Finally, the data collected by longitudinal studies and the data available through NDAR need to be exhaustively analyzed.
  • Standardized Outcome Measures: In order to truly determine the effectiveness of interventions and the outlook across the lifespan, measurements of outcomes that are responsive to interventions and quality of life measures that can help determine the effectiveness and impact of services must be identified and standardized.

Future Directions

History may identify the past 5 years as an inflection point for our understanding of ASD. Increased investments from both private and government sources, improved resources for research, and expanded communities of scientists entering this field all provide hope that recent progress will accelerate. Many new areas of science, from the microbiome to social prosthetics, may transform our understanding of ASD with entirely new tools for interventions. One of the greatest challenges will be finding the right balance between science that can immediately improve quality of life for individuals with ASD and science that seeks to gain fundamental knowledge about ASD with the promise of prevention or cure in the future. The ASD community has a diversity of views on how to set this balance, with some focused on identifying the causes with the goal of preventing ASD, reducing disability or finding a cure, while others focus on accommodation, inclusion, and acceptance. In the near term, science can serve both sets of goals to develop a deeper understanding of the many forms of ASD and enhance interventions, services and supports that can offer individuals with ASD opportunities for independence and full participation in community life.

References

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47 Van Balkom ID, Bresnahan M, Vuijk PJ, Hubert J, Susser E, Hoek HW. Paternal age and risk of autism in an ethnically diverse, non-industrialized setting: Aruba. PloS One. 2012 7(9):e45090. [PMID: 22984615]

48 Sasanfar R, Haddad SA, Tolouei A, Ghadami M, Yu D, Santangelo SL. Paternal age increases the risk for autism in an Iranian population sample. Mol. Autism. 2010 1(1):2. [PMID: 20678245]

49 Cheslack-Postava K, Liu K, Bearman PS. Closely spaced pregnancies are associated with increased odds of autism in California sibling births. Pediatrics. 2011 Feb; 127(2):246–253. [PMID: 21220394]

50 Gunnes N, Suren P, Bresnahan M, Hornig M, Lie KK, Lipkin WI, Magnus P, Nilsen RM, Reichborn-Kjennerud T, Scholberg S, Susser ES, Oyen AS, Stoltenberg C. Interpregnancy interval and risk of autistic disorder. Epidemiology. 2013 Nov; 24(6):906–912. [PMID: 24045716]

51 Windham GC, Zhang L, Gunier R, Croen LA, Grether JK. Autism spectrum disorders in relation to distribution of hazardous air pollutants in the san francisco bay area. Environ. Health Perspect. 2006 Sep; 114(9):1438–1444. [PMID: 16966102]

52 Volk HE, Hertz-Picciotto I, Delwiche L, Lurmann F, McConnell R. Residential proximity to freeways and autism in the CHARGE study. Environ. Health Perspect. 2011 Jun; 119(6):873–877. [PMID: 21156395]

53 Volk HE, Lurmann F, Penfold B, Hertz-Picciotto I, McConnell R. Traffic-related air pollution, particulate matter, and autism. JAMA Psychiatry. 2013 Jan; 70(1):71–77. [PMID: 23404082]

54 Becerra TA, Wilhelm M, Olsen J, Cockburn M, Ritz B. Ambient air pollution and autism in Los Angeles county, California. Environ. Health Perspect. 2013 Mar; 121(3):380–386. [PMID: 23249813]

55 Roberts AL, Lyall K, Hart JE, Laden F, Just AC, Bobb JF, Koenen KC, Ascherio A, Weisskopf MG. Perinatal air pollutant exposures and autism spectrum disorder in the children of nurses' health study II participants. Environ. Health Perspect. 2013 Aug; 121(8):978–984. [PMID: 23816781]

56 Jung C-R, Lin Y-T, Hwang B-F. Air pollution and newly diagnostic autism spectrum disorders: a population-based cohort study in taiwan. PLoS ONE. 2013 8(9):e75510. [PMID: 24086549]

57 Koch HM, Calafat AM. Human body burdens of chemicals used in plastic manufacture. Philos. Trans. R. Soc. Lond. B. Biol. Sci. 2009 Jul; 364(1526):2063–2078. [PMID: 19528056]

58 Miodovnik A, Engel SM, Zhu C, Ye X, Soorya LV, Silva MJ, Calafat AM, Wolff MS. Endocrine disruptors and childhood social impairment. Neurotoxicology. 2011 Mar; 32(2):261–267. [PMID: 21182865]

59 Schettler T. Human exposure to phthalates via consumer products. Int. J. Androl. 2006 Feb; 29(1):134–139; discussion 181–185. [PMID: 16466533]

60 Eskenazi B et al. Organophosphate pesticide exposure and neurodevelopment in young Mexican-American children. Environ. Health Perspect. 2007 May; 115(5):792–798. [PMID: 17520070]

61 Rauh VA, Perera FP, HOrton MK, Whyatt RM, Bansal R, Hao X, Liu J, Barr DB, SLotkin TA, Peterson BS. Brain anomalies in children exposed prenatally to a common organophosphate pesticide. Proc. Natl. Acad. Sci. 2012 May; 109(20):7871–7876. [PMID: 22547821]

62 Roberts EM, English PB, Grether JK, Windham GC, Somberg L, Wolff C. Maternal residence near agricultural pesticide applications and autism spectrum disorders among children in the California Central Valley. Environ. Health Perspect. 2007 Oct; 115(10):1482–1489. [PMID: 17938740]

63 Schmidt RJ, Hansen RL, Hartiala J, Allayee H, Schmidt LC, Tancredi DJ, Tassone F, Hertz-Picciotto I. Prenatal vitamins, one-carbon metabolism gene variants, and risk for autism. Epidemiol. Camb. Mass. 2011 Jul; 22(4):476–485. [PMID: 21610500]

64 Schmidt RJ, Tancredi DJ, Ozonoff S, Hansen RL, Hartiala J, Allayee H, Schmidt LC, Tassone F, Hertz-Picciotto I. Maternal periconceptional folic acid intake and risk of autism spectrum disorders and developmental delay in the CHARGE (CHildhood Autism Risks from Genetics and Environment) case-control study. Am. J. Clin. Nutr. 2012 Jul; 96(1):80–89. [PMID: 22648721]

65 Surén P, Roth C, Bresnahan M, Haugen M, Hornig M, Hirtz D, Lie KK, Lipkin WI, Magnus P, Reichborn-Kjennerud T, Schjølberg S, Davey Smith G, Øyen AS, Susser E, Stoltenberg C. Association between maternal use of folic acid supplements and risk of autism spectrum disorders in children. JAMA. 2013 Feb; 309(6):570–577.[PMID: 23403681]

66 Robins DL, Casagrande K, Barton M, Chen CM, Dumont-Mathieu T, Fein D. Validation of the Modified Checklist for Autism in Toddlers, Revised With Follow-up (M-CHAT-R/F). Pediatrics. 2013 Dec; 133(1):37–45. [PMID: 24366990]

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68 Wetherby AM, Brosnan-Maddox S, Peace V, Newton L. Validation of the Infant--Toddler Checklist as a broadband screener for autism spectrum disorders from 9 to 24 months of age. Autism. 2008 Sep; 12(5):487–511. [PMID: 18805944]

69 Pierce K, Carter C, Weinfeld M, Desmond J, Hazin R, Bjork R, Gallagher N. Detecting, studying, and treating autism early: the one-year well-baby check-up approach. J. Pediatr. 2011 Sep; 159(3):458–465.e1–6. [PMID: 21524759]

70 Dawson G, Rogers S, Munson J, Smith M, Winter J, Greenson J, Donaldson A, Varley J. Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model. Pediatrics. 2010 Jan; 125(1):e17–23. [PMID: 19948568]

71 Eapen V, Crnčec R, Walter A. Clinical outcomes of an early intervention program for preschool children with Autism Spectrum Disorder in a community group setting. BMC Pediatr. 2013 13(1):3. [PMID: 23294523]

72 Goods KS, Ishijima E, Chang Y-C, Kasari C. Preschool based JASPER intervention in minimally verbal children with autism: pilot RCT. J. Autism Dev. Disord. 2013 May; 43(5):1050–1056. [PMID: 22965298]

73 Kasari C, Gulsrud A, Freeman S, Paparella T, Hellemann G. Longitudinal follow-up of children with autism receiving targeted interventions on joint attention and play. J. Am. Acad. Child Adolesc. Psychiatry. 2012 May; 51(5):487–495. [PMID: 22525955]

74 Landa RJ, Holman KC, O'Neill AH, Stuart EA. Intervention targeting development of socially synchronous engagement in toddlers with autism spectrum disorder: a randomized controlled trial. J. Child Psychol. Psychiatry. 2011 Jan; 52(1):13–21. [PMID: 21126245]

75 Rogers SJ, Estes A, Lord C, Vismara L, Winter J, Fitzpatrick A, Guo M, Dawson G. Effects of a brief Early Start Denver model (ESDM)-based parent intervention on toddlers at risk for autism spectrum disorders: a randomized controlled trial. J. Am. Acad. Child Adolesc. Psychiatry. 2012 Oct; 51(10):1052–1065. [PMID: 23021480]

76 Udagawa T, Farny NG, Jakovcevski M, Kaphzan H, Alarcon JM, Anilkumar S, Ivshina M, Hurt JA, Nagaoka K, Nalavadi VC, Lorenz LJ, Bassell GJ, Akbarian S, Chattarji S, Klann E, Richter JD. Genetic and acute CPEB1 depletion ameliorate Fragile X pathophysiology. Nat. Med. 2013 Nov; 19(11):1473–1477. [PMID: 24141422]

77 Rotschafer SE, Trujillo MS, Dansie LE, Ethell IM, Razak KA. Minocycline treatment reverses ultrasonic vocalization production deficit in a mouse model of Fragile X Syndrome. Brain Res. 2012 Feb; 14397–14. [PMID: 22265702]

78 Dawson G, Jones EJ, Merkle K, Venema K, Lowy R, Faja S, Kamara D, Murias M, Greenson J, Winter J, Smith M, Rogers SJ, Webb SJ. Early behavioral intervention is associated with normalized brain activity in young children with autism. J. Am. Acad. Child Adolesc. Psychiatry. 2012 Nov; 51(11):1150–1159. [PMID: 23101741]

79 Shattuck PT, Roux AM, Hudson LE, Taylor JL, Maenner MJ, Trani JF. Services for adults with an autism spectrum disorder. Can. J. Psychiatry Rev. Can. Psychiatr. 2012 May; 57(5):284–291. [PMID: 22546060]

80 Shattuck PT, Wagner M, Narendorf S, Sterzing P, Hensley M. Post-high school service use among young adults with an autism spectrum disorder. Arch. Pediatr. Adolesc. Med. 2011 Feb; 165(2):141–146. [PMID:21300654]

81 Roux AM, Shattuck PT, Cooper BP, Anderson KA, Wagner M, Narendorf SC. Postsecondary employment experiences among young adults with an autism spectrum disorder. J. Am. Acad. Child Adolesc. Psychiatry. 2013 Sep; 52(9):931–939. [PMID: 23972695]

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Appendix

ASD Research Progress on IACC Strategic Plan Objectives: Summary of Years 2008 to 2012

The tables include data (project numbers and funding) from Federal and private funders of ASD research for years 2008 through 2012, as aligned with the objectives of the 2011 IACC Strategic Plan. They also include summaries (based on discussions during the 2013 IACC Strategic Plan Update Workshop) of progress on reaching the goals of each objective, as well as remaining gaps, needs, and opportunities. Please note the following:

During the updating of the Strategic Plan from 2008 to 2010, the wording and numbering of objectives changed. Data included in each Portfolio Analysis Report from 2008 to 2012 was categorized at the time with respect to the most recent iteration of the Strategic Plan where the objectives had changed. For the purpose of this five-year comparison, data from the Portfolio Analyses conducted in 2008 and 2009 were aligned with the most recent objectives, found in the 2011 Strategic Plan. The full wording of the 78 objectives listed in the 2011 Strategic Plan is depicted in the left column of the table.

The middle five columns of the table contain the data (project numbers and funding) for each individual year from 2008 to 2012, with the objective number (as it appeared in the annual Portfolio Analysis) listed above it. The IACC recommended budget listed below the project data represents the most updated budget listed in 2011 Strategic Plan. If the recommended budget has been revised since 2008, the year the revision took place is found in parentheses following the budget figure. Therefore, if there is no mention of a revision, the IACC recommended budget has remained constant from 2008 to 2011. The annual project status for each objective from 2008 to 2012 is indicated within the table by colored highlighting of the objective number. An objective is considered active if its status is green or yellow, and inactive if its status is red.

  • Any objective colored green has funding which is greater than or equal to the recommended funding for that year (determined by annualizing the recommended budget associated with that objective); any objective colored yellow has active projects, but with funding that totals less than the annualized recommended amount; while any objective colored red has no active projects.1
  • Objectives whose overarching aim (e.g., the ultimate goal of the research as opposed to the number of projects called for in the objective) were achieved/partially achieved either in a previous year, or with funding that was not captured in the portfolio analyses,2 are colored pale green/pale yellow.

The far right column of the table lists the sum of the total funding aligned with each objective from 2008 to 2012. Highlighting of each total gives an indication of the progress toward fulfilling each objective.

  • Green highlighting indicates that funding fully meets the recommend budget. Yellow highlighting denotes that funding for a particular objective partially meets the IACC recommended budget, while red highlighting indicates that there has been no funding towards the particular objective.
  • Objectives whose overarching aim (e.g., the ultimate goal of the research as opposed to the number of projects called for in the objective) was achieved/partially achieved with funding that was not captured in the portfolio analyses, are colored pale green/pale yellow.

1 Please note that while the green, yellow and red indicators suggest a funding status for each year and that looking across all years may give some indication of a trend, that some agencies and organizations provide all the funding for multiyear grants in a single year, resulting in the appearance of "less funding" in other years, but that projects fulfilling the objectives may still have been ongoing in the years where the funding appears to be less. Thus, it is important to note the numbers of projects in looking across the chart, and to keep in mind that in a series, where, for example, most of the indicators are green, that the objective is likely to be largely "complete" according to the funding-based measure.

2 Reasons why funding for certain projects may not have been captured in the portfolio analyses include projects that were supported by funding that was not specific for autism (i.e., projects that benefited autism but were supported by general neuroscience or developmental disorder funding) or projects supported by funders that did not participate in the portfolio analysis in a given year.

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, and renewed under the Combating Autism Reauthorization Act (CARA) 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 biomedical 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
  • 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
    Senior Advisor on Disability Policy
    U.S. Department of Health and Human Services
    Principal Deputy Administrator
    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
  • Linda K. Smith
    Deputy Assistant Secretary and
    Inter-Department Liaison for Early Childhood Development
    Administration for Children and Families
    Washington, DC
  • 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 Blog
    San Jose, California
  • 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.
    Professor
    Department of Psychiatry and Behavioral Sciences
    Duke University Medical Center
    Durham, 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, Ph.D.
    Self Advocate
    Co-founder 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

IACC Alternates

  • Silvana Borges, M.D.
    (Representing Tiffany R. Farchione, M.D.)
    Acting Team Leader
    U.S. Food and Drug Administration
    Center for Drug Evaluation and Research
    Division of Psychiatry Products
    Silver Spring, Maryland
  • Josie Briggs, M.D.
    (Representing Francis S. Collins, M.D., Ph.D.)
    Director
    National Center for Complementary and
    Alternative Medicine
    National Institutes of Health
    Bethesda, Maryland
  • Judith A. Cooper, Ph.D.
    (Representing 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, Maryland
  • Alice Kau, Ph.D.
    (Representing Alan E. Guttmacher, M.D.)
    Health Scientist Administrator
    Eunice Kennedy Shriver National Institute 
    of Child Health and Human Development
    National Institutes of Health
    Bethesda, Maryland
  • Cindy Lawler, Ph.D.
    (Representing Linda Birnbaum, Ph.D.)
    Chief
    Genes, Environment and Health Branch
    National Institute of Environmental
    Health Sciences
    National Institutes of Health
    Research Triangle Park, North Carolina
  • Shantel E. Meek, Ph.D.
    (Representing Linda K. Smith)
    Policy Advisor
    Early Childhood Development
    Administration for Children and Families
    Washington, DC
  • Shui-Lin (Stan) Niu, Ph.D.
    (Representing Donna M. Kimbark, Ph.D.)
    Science Officer
    Congressionally Directed Medical
    Research Programs
    U.S. Department of Defense
    Fredrick, Maryland
  • Cathy Rice, Ph.D.
    (Representing Coleen Boyle, Ph.D., M.S. Hyg.)
    Behavioral Scientist
    Developmental Psychologist
    Prevention Research Branch
    National Center on Birth Defects and
    Developmental Disabilities
    Centers for Disease Control and Prevention
    Atlanta, Georgia
  • Lawrence J. Wexler, Ed.D.
    (Representing Michael K. Yudin)
    Director
    Research to Practice Division
    U.S. Department of Education
    Office of Special Education and
    Rehabilitative Services
    Washington, DC

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 2013 IACC Strategic Plan Update.

  • David G. Amaral, Ph.D.
    University of California Distinguished Professor
    Beneto Foundation Chair and Director of Research
    MIND Institute
    University of California, Davis
    Sacramento, California
  • Scott Badesch
    President and Chief Operating Officer
    Autism Society
    Bethesda, Maryland
  • Brian Boyd, Ph.D.
    Assistant Professor, Division of
    Occupational Science
    School of Medicine
    University of North Carolina at Chapel Hill
    Chapel Hill, North Carolina
  • Joseph Buxbaum, Ph.D., M.Sc.
    Professor of Pscyhiatry, Neuroscience, and
    Genetics and Genomic Sciences
    Director, Seaver Autism Center for Research
    and Treatment
    Icahn School of Medicine at Mount Sinai
    New York, New York
  • Nancy Cheak-Zamora, Ph.D., M.A.
    Assistant Professor, Department of Health
    Sciences
    School of Health Professions
    University of Missouri
    Columbia, Missouri
  • Lisa Croen, Ph.D.
    Director, Kaiser Permanente Autism Research
    Program
    Senior Research Scientist, Division of Research
    Kaiser Permanente Northern California
    Oakland, California
  • Julie Daniels, Ph.D., M.P.H.
    Associate Professor of Epidemiology and of
    Maternal and Child Health
    Gillings School of Global Public Health
    Director, North Carolina Center for Autism and
    Developmental Disabilites Research and
    Epidemiology
    University of North Carolina at Chapel Hill
    Chapel Hill, North Carolina
  • Maureen Durkin, Ph.D., Dr.P.H., M.P.H.
    Investigator, Waisman Center
    Professor, Departments of Population Health
    Sciences and of Pediatrics
    School of Medicine
    University of Wisconsin-Madison
    Madison, Wisconsin
  • Margaret Danielle Fallin, Ph.D.
    Professor and Chair, Department of Mental Health
    Director, Wendy Klag Center for Autism and
    Developmental Disabilites
    Genetic Epidemiologist, Genetic Epidemiology
    Division
    Bloomberg School of Public Health
    Johns Hopkins University
    Baltimore, Maryland
  • Dan Hall, M.B.A.
    Manager, National Database for Autism Research
    National Institute of Mental Health
    National Institutes of Health/OMNITEC
    Solutions, Inc.
    Bethesda, Maryland
  • Irva Hertz-Picciotto, Ph.D., M.P.H.
    Professor, Department of Public Health Sciences
    School of Medicine
    Principal Investigator, CHARGE Study and the
    MARBLES Study
    University of California, Davis
    Sacramento, California
  • Ami Klin, Ph.D.
    Chief of 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
    Kennedy Krieger Institute
    Baltimore, Maryland
  • Thomas Lehner, Ph.D., M.P.H.
    Chief, Genomics Research Branch
    Director, Office of Genomics Research
    Coordination
    National Institute of Mental Health
    National Institutes of Health
    Bethesda, Maryland
  • Nancy J. Minshew, M.D.
    Professor of Psychiatry and Neurology
    School of Medicine
    Director, Center of Excellence in Autism
    Research
    University of Pittsburgh
    Pittsburgh, Pennsylvania
  • Craig J. Newschaffer, Ph.D., S.M.
    Professor and Chair, Department of
    Epidemiology and Biostatistics
    School of Public Health
    Director, A.J. Drexel Autism Institute
    Drexel University
    Philadelphia, Pennsylvania
  • Carlos Pardo-Villamizar, M.D.
    Associate Professor of Neurology and Pathology
    School of Medicine
    Johns Hopkins University
    Baltimore, Maryland
  • Kevin Pelphrey, Ph.D.
    Professor of Psychology
    Director, Child Neuroscience Laboratory
    Harris Professor in the Child Study Center
    School of Medicine
    Yale University
    New Haven, Connecticut
  • James M. Perrin, M.D.
    Professor of Pediatrics
    Harvard Medical School
    Harvard UniversityBoston, Massachusetts
    Boston, Massachusetts
  • Karen L. Pierce, Ph.D.
    Assistant Director, UCSD Autism Center of
    Excellence
    Assistant Adjunct Professor of Neurosciences
    School of Medicine
    University of California, San Diego
    San Diego, California
  • Paul Shattuck, Ph.D.
    Leader, Research Program Area on Life Course
    Outcomes
    A.J. Drexel Autism Institute
    Associate Professor
    School of Public Health
    Drexel University
    Philadelphia, Pennsylvania
  • Aubyn C. Stahmer, Ph.D., M.A.
    Research Scientist
    University of California, San Diego and Rady
    Children's Hospital
    San Diego, California
  • Jeremy M. Veenstra-Vanderweele, M.D.
    Assistant Professor of Clinical Psychiatry and
    Pediatrics
    Vanderbilt Kennedy Center for Research on
    Human Development
    Vanderbilt Brain Institute
    Vanderbilt University
    Nashville, Tennessee
  • Dennis P. Wall, Ph.D.
    Associate Professor of Pathology
    Director, Computational Biology Initiative
    Center for Biomedical Informatics
    Harvard Medical School
    Harvard University
    Boston, Massachusetts
  • Paul P. Wang, M.D.
    Senior Vice President
    Head of Medical Research
    Autism Speaks
  • Zach E. Warren, Ph.D.
    Associate Professor of Pediatrics, Psychiatry,
    and Special Education
    Director, Treatment and Research Institute for
    Autism Spectrum Disorders
    Vanderbilt Kennedy Center for Research on
    Human Development
    Vanderbilt University
    Nashville, Tennessee
  • Amy Wetherby, Ph.D., CCC-SLP
    Professor, Department of Clinical Sciences
    Director, Autism Institute
    Laurel Schnendel Professor, Department of
    Communication Disorders
    Florida State University College of Medicine
    Tallahassee, Florida

Office of Autism Research Coordination (OARC) Staff List

  • Susan A. Daniels, Ph.D.
    Director, OARC and
    Executive Secretary, IACC
  • Dawn A. Beraud, Ph.D.
    Science Policy Analyst
  • Emily B. Einstein, Ph.D.
    AAAS Science and
    Technology Policy Fellow
  • Nicole Jones, B.B.A.
    Senior Web Developer
  • Kipchumba Kitur, B.A.
    Operations Coordinator
  • Stephanie Mok, A.B.
    Science Policy Analyst
  • Sarah Naylor, Ph.D.
    Science Policy Detailee/
    NIMH Intramural Program
  • Miguelina Perez
    Management Analyst
  • Sarah E.V. Rhodes, Ph.D.
    Science Policy Analyst
  • Kerri Wachter
    Science Writer/Editor
Appendices

 
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