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2018 IACC Working Group

Improving Health Outcomes for Individuals on the Autism Spectrum
IACC Working Group, which was tasked with Improving Health Outcomes for Individuals on the Autism Spectrum

Purpose

The IACC formed the Working Group, "Improving Health Outcomes for Individuals on the Autism Spectrum" to examine health conditions affecting people on the autism spectrum and opportunities to improve their health and wellness. The Working Group will develop advice and recommendations regarding these issues that will be provided to the IACC full committee for their consideration and further action. The Working Group membership is composed of IACC members, federal agency officials, and invited external participants, including autistic adults, family members, advocates, researchers, providers, and other community stakeholders. The Working Group will explore topics such as health and general wellness for people with ASD, co-occurring physical and mental health conditions, premature mortality, patient-provider interactions (including medical practitioner training), parental/family mental health. From September 2018 through September 2019, Working Group activities will explore solutions to the problem such as how to: 1) support research to better understand the health conditions that affect individuals on the autism spectrum; 2) increase community/provider awareness of these conditions and their treatment; and 3) foster development of practice guidelines, policies, service approaches and other efforts to improve the health and quality of life of people on the autism spectrum. The Working Group will host activities and prepare documents summarizing its findings and recommendations.


Events

2018 IACC Workshop Addressing the Health Needs of People on the Autism Spectrum
Thursday, September 27, 2018

Conference Calls


Working Group Roster

The IACC Health Outcomes Working Group includes IACC members, federal agency officials, and invited external participants, including autistic adults, family members, advocates, researchers, providers, and other community stakeholders.

Chairs

  • David Amaral, Ph.D. Distinguished Professor, Department of Psychiatry and Behavioral Sciences University of California, Davis (UC) Research Director, UC Davis MIND Institute Sacramento, CA
  • Julie Lounds Taylor, Ph.D. Assistant Professor of Pediatrics and Special Education Vanderbilt University Investigator Vanderbilt Kennedy Center Nashville, TN

IACC and Federal Agency Members

  • Patricia Dietz, Dr.P.H., M.P.H. Chief, Developmental Disabilities Branch National Center for Birth Defects and Developmental Disabilities U.S. Centers for Disease Control and Prevention Atlanta, GA
  • Jennifer Johnson, Ed.D. Deputy Commissioner Administration on Intellectual and Developmental Disabilities Administration for Community Living U.S. Department of Health and Services Washington, DC
  • Denise Juliano-Bult, M.S.W. Chief, Systems Research Program Chief, Disparities in Mental Health Services Research Program Division of Services and Intervention Research (DSIR) Services Research and Clinical Epidemiology Branch National Institute of Mental Health Rockville, MD
  • Alice Kau, Ph.D. Program Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
  • Kevin Pelphrey, Ph.D. Carbonell Family Professor in Autism and Neurodevelopmental Disorders Professor, 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
  • Scott Michael Robertson, Ph.D. Policy Advisor, Employment-Related Supports Team, Office of Disability Employment Policy U.S. Department of Labor Washington, DC
  • Marcella Ronyak, Ph.D., LCSW, CDP Director Division of Clinical & Community Services Indian Health Service Rockville, MD
  • Nina Schor, M.D., Ph.D. Deputy Director National Institute of Neurological Disorders and Stroke Bethesda, MD
  • Alison Tepper Singer, M.B.A. President Autism Science Foundation Scarsdale, NY

External Participants

  • Gregory Barnes, M.D., Ph.D. Director, University of Louisville Autism Center Associate Professor, Child Neurology, Department of Neurology University of Louisville School of Medicine Louisville, KY
  • Timothy Buie, M.D. Attending Physician, Division of Gastroenterology, Hepatology and Nutrition Boston Children’s Hospital Assistant Professor of Pediatrics Harvard Medical School Boston, MA
  • Dan Coury, M.D. Chief, Section of Developmental and Behavioral Pediatrics Nationwide Children’s Hospital Professor, Clinical Pediatrics and Psychiatry The Ohio State University College of Medicine Columbus, OH
  • Lisa Croen, Ph.D. Senior Research Scientist, Division of Research Kaiser Permanente Northern California Director, Kaiser Permanente Autism Research Program Oakland, CA
  • Orrin Devinsky, M.D. Director, New York University Epilepsy Center Professor of Neurology, Neuroscience, Psychiatry, Neurosurgery New York University New York, NY
  • Sarah Gardner Founding family member and Advisory Council member, MIND Institute University of California, Davis Sacramento, CA
  • Dena Gassner, M.S.W. Ph.D. Candidate, Adelphi University Adjunct Faculty, Adelphi University Adjunct Faculty, Towson University Board of Directors, The Arc US Professional Advisory Board Member, Asperger Syndrome and High Functioning Autism Association NY Garden City, NY
  • Antonio Hardan, M.D. Professor of Psychiatry and Behavioral Sciences - Child and Adolescent Psychiatry and Child Development Stanford University Medical Center Stanford, CA
  • Joseph Joyce, M.B.A. Executive Chair, Board of Directors, Autism Society of America Harrisburg, PA
  • Connor Kerns, Ph.D. Assistant Professor, Psychology Department University of British Columbia Vancouver, BC CA
  • Bryan King, M.D., M.B.A. Vice Chair for Child and Adolescent Psychiatry, Department of Psychiatry University of California, San Francisco (UCSF) Vice President, Child Behavioral Health Services, UCSF Benioff Children’s Hospitals San Francisco, CA
  • Clarissa Kripke, M.D. Clinical Professor, Department of Family and Community Medicine Director, Office of Developmental Primary Care University of California, San Francisco San Francisco, CA
  • Beth Ann Malow, M.D., M.S. Burry Chair in Cognitive Childhood Development, Professor of Neurology and Pediatrics Vanderbilt Kennedy Center Director, Vanderbilt Sleep Disorders Division Vanderbilt University Medical Center Nashville, TN
  • Micah Mazurek, Ph.D. Associate Professor of Education Curry School of Education University of Virginia Charlottesville, VA
  • Donna Murray, Ph.D. Vice President, Clinical Services Head, Autism Treatment Network Autism Speaks Adjunct Associate Professor of Clinical Pediatrics, Division of Developmental and Behavioral Pediatrics Cincinnati Children’s Hospital Department of Pediatrics University of Cincinnati Cincinnati, OH
  • Christina Nicolaidis, M.D., M.P.H. Professor and Senior Scholar in Social Determinants of Health, School of Social Work Co-Director, Academic Autism Spectrum Partnership in Research and Education Portland State University Adjunct Associate Professor, Division of General Internal Medicine Oregon Health and Science University Portland, OR
  • Dora Raymaker, Ph.D. Research Assistant Professor, Regional Research Institute for Human Services, School of Social Work Co-Director, Academic Autism Spectrum Partnership in Research and Education Portland State University Portland, OR
  • Elliott Sherr, M.D., Ph.D. Director, Comprehensive Center for Brain Development Professor, Department of Neurology University of California, San Francisco San Francisco, CA
  • Matthew Siegel, M.D. Vice President Medical Affairs, Developmental Disorders Service, Maine Behavioral Healthcare Associate Professor of Psychiatry & Pediatrics, Tufts University School of Medicine Faculty Scientist II, Maine Medical Center Research Institute South Portland, ME
  • Sarah Spence, M.D., Ph.D. Co-Director, Autism Spectrum Center Boston Children’s Hospital Assistant Professor of Neurology Harvard Medical School Boston, MA
  • Jeremy Veenstra-VanderWeele, M.D. Ruane Professor for The Implementation of Science for Child and Adolescent Mental Health Director, Division of Child and Adolescent Psychiatry Co-Director, Whitaker Scholar Program in Developmental Neuropsychiatry, Department of Psychiatry Columbia University New York, NY
 
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