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Interagency Autism Coordinating Committee 1 INTERAGENCY AUTISM COORDINATING COMMITTEE HEALTH OUTCOMES WORKING GROUP THURSDAY, SEPTEMBER 27, 2018 The Interagency Autism Coordinating Committee (IACC) Health Outcomes Working Group convened in Rockville, Maryland, at the National Institute of Mental Health (NIMH), 6001 Executive Blvd., at 8:37 a.m., David Amaral, Ph.D. and Julie Lounds Taylor, Ph.D., Co- Chairs, presiding. PRESENT: SUSAN DANIELS, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), NIMH DAVID AMARAL, Ph.D., Co-Chair, IACC WG, University of California, Davis, (UC) JULIE LOUNDS TAYLOR, Ph.D., Co-Chair, IACC WG, Vanderbilt University SHELLI AVENEVOLI, Ph.D., (representing NIMH) GREGORY BARNES, M.D., Ph.D., University of Louisville School of Medicine TIMOTHY BUIE, M.D., Harvard Medical School JUDITH COOPER, Ph.D., National Institute on Deafness and other Communication Disorders (NIDCD) 2 PRESENT: (continued) DAN COURY, M.D., The Ohio State University College of Medicine SAMANTHA CRANE, J.D., Autistic Self Advocacy Network (ASAN) GERALDINE DAWSON, Ph.D., Duke University PATRICIA DIETZ, Dr.P.H., M.P.H., U.S. Centers for Disease Control and Prevention (CDC) SARAH GARDNER, University of California, Davis (attended by phone) DENA GASSNER, M.S.W., Adelphi University ANTONIO HARDAN, M.D., Stanford University Medical Center JENNIFER JOHNSON, Ed.D., U.S. Department of Health and Human Services (HHS) JOSEPH JOYCE, M.B.A., Autism Society of America (attended by Phone) DENISE JULIANO-BULT, M.S.W., NIMH ALICE KAU, Ph.D., Eunice Kennedy Shriver National Institute of Child Health and Development (NICHD) CONNOR KERNS, Ph.D., University of British Columbia BRYAN KING, M.D., M.B.A., University of California, San Francisco (UCSF) (attended by phone) 3 PRESENT: (continued) CLARISSA KRIPKE, M.D., UCSF BETH ANN MALOW, M.D., M.S., Vanderbilt University Medical Center MICAH MAZUREK, Ph.D., University of Virginia DONNA MURRAY, Ph.D., University of Cincinnati CHRISTINA NICOLAIDIS, M.D., M.P.H., Oregon Health and Science University JEREMY PARR, M.D., Newcastle University Institute of Neuroscience, United Kingdom KEVIN PELPHREY, Ph.D., University of Virginia DORA RAYMAKER, Ph.D., Portland State University (attended by phone) LOUIS REICHARDT, Ph.D., Simons Foundation Autism Research Initiative (SFARI) ROBERT RING, Ph.D., Vencerx Therapeutics SCOTT MICHAEL ROBERTSON, Ph.D., U.S. Department of Labor (DOL) MARCELLA RONYAK, Ph.D., LCSW, CDP Indian Health Service NINA SCHOR, M.D., Ph.D., National Institute of Neurological Disorders and Stroke (NINDS) ROBYN SCHULHOF, M.A. (representing Laura Kavanagh, M.P.P.) Health Resources and Services Administration (HRSA) 4 PRESENT: (continued) STUART SHAPIRA, M.D., Ph.D., CDC MATTHEW SIEGEL, M.D., Tufts University School of Medicine ALISON TEPPER SINGER, M.B.A., Autism Science Foundation SARAH SPENCE, M.D., Ph.D., Harvard Medical School JEREMY VEENSTRA-VANDERWEELE, M.D., Columbia University 5 TABLE OF CONTENTS Welcome and Introductions 9 Susan Daniels, Ph.D., Director, ORAC, NIMH, and Executive Secretary, IACC David G. Amaral, Ph.D., Co-Chair, IACC WG, Distinguished Professor, Department of Psychiatry and Behavioral Science, University of California, Davis (UC), UC Davis MIND Institute Julie Lounds Taylor, Ph.D., Co-Chair, IACC WG, Assistant Professor, Pediatrics and Special Education, Vanderbilt University, and Investigator, Vanderbilt Kennedy Center Health and Healthcare for Adults on the Autism Spectrum: The Newcastle University Adulthood and Aging Research Programme 30 Jeremy Parr, M.D., Professor of Pediatric Neurodisability, Newcastle University Institute of Neuroscience, United Kingdom Physical and Mental Health in Autism – Epidemiology of Co-occurring Conditions 87 David G. Amaral, Ph.D., for Lisa Croen, Ph.D., Senior Research Scientist, Division of Research, Kaiser Permanente Northern California, and Director, Kaiser Permanente Autism Research Program 6 Discussion 98 Public Comment Session 134 Oral Public Comments 134 Mark D. Vieth 136 Annie Acosta 143 Dr. Xue-Jun Kong 149 Written Public Comments 155 Oni Celestin, Ph.D., Science Policy Analyst, ORAC, NIMH Working Group Discussion of Comments 166 Epilepsy in Individuals with Autism – State of the Science 202 Basic Science: Share Mechanisms 202 Gregory Barnes, M.D., Ph.D., Director, University of Louisville Autism Center, and Associate Professor, Child Neurology, Department of Neurology, University of Louisville School of Medicine Clinical Science: Epidemiology and Management 218 Sarah Spence, M.D., Ph.D., Co-Director, Autism Spectrum Center, Boston Children’s Hospital, and Assistant Professor of Neurology, Harvard Medical School Discussion 238 7 Autism and Gastrointestinal Disorders 270 Timothy Buie, M.D., Attending Physician, Division of Gastroenter- ology, Hepatology and Nutrition, Boston Children’s Hospital, and Assistant Professor of Pediatrics, Harvard Medical School Discussion 302 Autism Spectrum Disorder and Sleep 323 Autism Spectrum Disorder and Sleep – Identifying Challenges and Finding Solutions 323 Beth Ann Malow, M.D., M.S., Burry Chair in Cognitive Childhood Development, Professor of Neurology and Pediatrics, Vanderbilt Kennedy Center, and Director, Vanderbilt Sleep Disorders Division Discussion 343 Patient-Provider Interactions 377 Healthcare Experiences of Children with Autism: Opportunities for Improvement 378 Micah Mazurek, Ph.D., Associate Professor of Education, Curry School of Education, University of Virginia 8 Healthcare Experiences of Adults on the Autism Spectrum: Challenges and Solutions 400 Christina Nicolaidis, M.D., M.P.H., Professor and Senior Scholar in Social Determinants of Health, School of Social Work, Portland State University, and Adjunct Associate Professor, Division of General Internal Medicine, Oregon Health and Science University Dora Raymaker, Ph.D., Research Assistant Professor, Portland University; Co- Director, Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Discussion 433 9 PROCEEDINGS DR. SUSAN DANIELS: Good morning and welcome to this IACC workshop on addressing the health needs of people on the autism spectrum. We are really excited about the agenda we have for today. The IACC has convened a working group on addressing the health outcomes of people on the autism spectrum. And we put together this workshop to start talking about some of the important issues that are at hand that the committee would like to address. We’re going to start out this morning with introductions. I’d ask because we have so many people at the table and on the phone that we would keep these introductions very short and just give your name, affiliation, and your relationship to autism whether you are an autistic adult, a parent, a 10 researcher, clinician or other person who is a part of the autism community. And I’d ask you to please turn on your microphones before you speak and then turn them off so that we do not get feedback from too many microphones being on. So I’ll start. My name is Susan Daniels and I am the director of the Office of Autism Research Coordination here at the National Institute of Mental Health. Our office manages the Interagency Autism Coordinating Committee. DR. JULIE TAYLOR: I’m Julie Taylor from Vanderbilt University. I’m an IACC member and researcher. DR. DAVID AMARAL: Good morning. I’m David Amaral. I’m at the UC Davis MIND Institute. I’m an IACC member and a researcher. 11 DR. KEVIN PELPHREY: Good morning. I’m Kevin Pelphrey from the University of Virginia. I am a neuroscientist and parent with a child of autism. DR. TIMOTHY BUIE: Good morning. I am Tim Buie. I am a pediatric gastroenterologist at the Children's Hospital in Boston and work in both clinical care and kids with autism and research. DR. JUDITH COOPER: Good morning. I’m Judith Cooper. I’m the acting director of the National Institute on Deafness and Other Communication Disorders and I also coordinate the autism portfolio and activities for my Institute. DR. JEREMY PARR: Good morning everyone. I am Jeremy Parr. I am a pediatric neurodisability clinical academic from 12 Newcastle University in the UK. I am really pleased to be here. Thanks. DR. MICAH MAZUREK: Good morning. I am Micah Mazurek. I am at the University of Virginia. I’m a clinical psychologist, a clinician, and a researcher. DR. CONNOR KERNS: Good morning. I am Connor Kerns from the University of British Columbia. I’m a clinical psychologist, clinician and researcher. DR. CLARISSA KRIPKE: I am Clarissa Kripke. I am a clinical professor of family and community medicine, director of developmental primary care at UCSF and have multiple roles. DR. DANIEL COURY: Good morning. I’m Dan Coury. I’m a developmental and behavioral pediatrician at Nationwide Children's 13 Hospital and Ohio State University. I do both clinical care and research. DR. PATRICIA DIETZ: Good morning. My name is Patty Dietz. I am an epidemiologist from CDC. I’m the branch chief that oversees the group that does the surveillance system ADDM, and ongoing case control study, SEED. DR. NINA SCHOR: Good morning. I’m Nina Schor. I am at the NINDS. I am the deputy director there. I am a child neurologist and researcher. DR. STUART SHAPIRA: Good morning. I am Stuart Shapira. I am the associate director for science and the chief medical officer in the National Center on Birth Defects and Developmental Disabilities at the CDC. I am a researcher on CDC's autism study, the study to explore early development, the case control study that Patty mentioned. 14 DR. MATTHEW SIEGEL: Hello. I’m Matthew Siegel. I’m a child psychiatrist and researcher. And I’m at Maine Medical Center and Tufts University. DR. ROBYN SCHULHOF: Good morning. My name is Robyn Schulhof. I am actually sitting in for Laura Kavanagh, who is the acting associate administrator at HRSA, Maternal Child Health Bureau. And I work on autism training programs. MS. DENA GASSNER: My name is Dena Gassner. I am recovering so bear with me. I am an adjunct faculty member at Adelphi University and Towson University. I’m a Ph.D.
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