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HEALTH OUTCOMES WORKING GROUP Meeting 1 INTERAGENCY AUTISM COORDINATING COMMITTEE HEALTH OUTCOMES WORKING GROUP WORKSHOP: ADDRESSING THE MENTAL HEALTH NEEDS OF PEOPLE ON THE AUTISM SPECTRUM TUESDAY, MAY 21, 2019 The Interagency Autism Coordinating Committee (IACC) Health Outcomes Working Group convened in Rockville, Maryland at the Hilton Washington DC/Rockville Hotel & Executive Meeting Ctr, 1750 Rockville Pike, at 8:30 a.m. Susan Daniels, Ph.D., presiding. PRESENT: SUSAN DANIELS, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), National Institute of Mental Health (NIMH) DAVID AMARAL, Ph.D., Co-Chair, IACC Health Outcomes Working Group, University of California, Davis JULIE LOUNDS TAYLOR, Ph.D., Co-Chair, IACC Health Outcomes Working Group, Vanderbilt University SHELLI AVENEVOLI, Ph.D., representing NIMH MELINDA BALDWIN, Ph.D., Administration for Children and Families (ACF) GREGORY BARNES, M.D., Ph.D., University of Louisville School of Medicine 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 LISA CROEN, Ph.D., Kaiser Permanente Northern California (attended by phone) DENA GASSNER, M.S.W., Adelphi University ANTONIO HARDAN, M.D., Stanford University Medical Center (attended by phone) JOSEPH JOYCE, M.B.A., Autism Society of America DENISE JULIANO-BULT, M.S.W., (representing Denny Pintello), NIMH ALICE KAU, Ph.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) CONNOR KERNS, Ph.D., University of British Columbia CLARISSA KRIPKE, M.D., University of California, San Francisco (attended by phone) BETH ANN MALOW, M.D., M.S., Vanderbilt University Medical Center (attended by phone) MICAH MAZUREK, Ph.D., University of Virginia DONNA MURRAY, Ph.D., University of Cincinnati (attended by phone) KEVIN PELPHREY, Ph.D., University of Virginia (attended by phone) 3 PRESENT: (continued) SCOTT MICHAEL ROBERTSON, Ph.D., U.S. Department of Labor (DOL) STUART SHAPIRA, M.D., Ph.D., (representing Patricia Dietz, Dr.P.H., M.P.H.) Centers for Disease Control and Prevention (CDC) MATTHEW SIEGEL, M.D., Maine Medical Center 4 TABLE OF CONTENTS Welcome, Introductions, Roll Call, and Approval of Minutes 9 Shelli Avenevoli, Ph.D., Deputy Director, NIMH Susan Daniels, PhD, Director, OARC, NIMH and Executive Secretary, IACC Julie Lounds Taylor, Ph.D., Co-Chair, IACC Health Outcomes Working Group, Associate Professor, Pediatrics and Special Education, Vanderbilt University, and Investigator, Vanderbilt Kennedy Center David Amaral, Ph.D., Co-Chair, IACC Health Outcomes Working Group, Distinguished Professor, Department of Psychiatry and Behavioral Science, University of California, Davis (UC), UC Davis MIND Institute Addressing the Mental Health Needs of People on the Autism Spectrum – An Overview and Path Forward 47 Carla Mazefsky, Ph.D., Associate Professor of Psychiatry and Psychology, University of Pittsburgh Discussion 64 5 Personal Perspectives on Mental Health Issues in ASD 94 Lindsey Nebeker, Development Specialist, Autism Society of America, Freelance Presenter/Speaker Dennis Mashue, Co-Founder, Tuck’s Tooques, LLC, Founder, OuterSelf Initiatives Alison Morantz, J.D., Ph.D., James and Nancy Kelso Professor of Law, Director of the Stanford Intellectual and Developmental Disabilities Law and Policy Project, and Senior Fellow and Steering Committee Member, Stanford Institute for Economic Policy Research Oral Public Comments 144 Susan Daniels, Ph.D., Director, OARC, NIMH and Executive Secretary, IACC Oral Commenters Eileen Nicole Simon, Ph.D., R.N. 144 James Williams 146 Written Public Comments 154 Oni Celestin, Ph.D., Science Policy Analyst, OARC, NIMH Discussion 159 6 Anxiety and OCD with ASD 180 Co-occurrence of Anxiety Disorders and Obsessive Compulsive Disorder with ASD 180 Connor Kerns, Ph.D., Assistant Professor, Department of Psychology, University of British Columbia, Canada Treatment of Anxiety in ASD 211 Judy Reaven, Ph.D., Associate Professor, Departments of Psychiatry and Pediatrics, University of Colorado Anschutz Medical Campus Discussion 233 Depression and Suicide 245 Depression in ASD 246 Katherine Gotham, Ph.D., Assistant Professor, Department of Psychiatry and Behavioral Sciences, Vanderbilt University Medical Center Suicide and Autism, Current Evidence and Research Methods 266 Anne Kirby, Ph.D., OTR/L, Assistant Professor, Occupational and Recreational Therapies, University of Utah Mechanisms Underlying Suicide Risk in 280 Autism Darren Hedley, Ph.D., Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Australia 7 Where do we go from here? Learning how To prevent suicide in partnership with Autistic people and their allies 294 Sarah Cassidy, Ph.D., Assistant Professor, School of Psychology, University of Nottingham, United Kingdom Discussion 316 Self-Injurious Behaviors (SIB) and Aggression 333 Matthew Siegel, M.D., Director, Autism & Developmental Disorders Inpatient Research Collaborative (ADDIRC), Maine Medical Research Institute, and Vice President Medical Affairs, Developmental Disorders Service, Maine Behavioral Healthcare Craig A. Erickson, M.D., Director, Fragile X Research and Treatment Center, and Medical Director, Psychiatry Neurobehavioral Continuum of Care, and Director of Research, The Kelly O’Leary Center for Autism Spectrum Disorders, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine-Affiliated Discussion 376 8 Mental Health Services Issues for People On the Autism Spectrum 389 Brenna Burns Maddox, Ph.D., LCP, Post-Doctoral Fellow and Licensed Clinical Psychologist, Penn Center For Mental Health, University of Pennsylvania Discussion 406 Wrap Up 426 Susan Daniels, Ph.D., Director, OARC, NIMH and Executive Secretary, IACC Julie Lounds Taylor, Ph.D., Co-Chair, IACC Health Outcomes Working Group, Associate Professor, Pediatrics and Special Education, Vanderbilt University, and Investigator, Vanderbilt Kennedy Center David Amaral, Ph.D., Co-Chair, IACC Health Outcomes Working Group, Distinguished Professor, Department of Psychiatry and Behavioral Science University of California, Davis (UC), UC Davis MIND Institute 9 PROCEEDINGS DR. SUSAN DANIELS: Good morning and welcome to this Interagency Autism Coordinating Committee Workshop, Addressing the Mental Health Needs of People on the Autism Spectrum. We welcome our online audience, people in the room, attendees, workshop participants, our speakers, our working group members and members of the IACC. We hope that this is really exciting and interesting day to talk about these very important issues that the IACC has raised interest in and wants to address through their work. We're going to have a few minutes of introductions so I'm going to allow us to have a few moments of welcome and then we're going to do a roll call and have a few introduction slides and then we'll go around the table and do introductions. 10 Welcome to all of you. I will be giving you a little bit of background on the reasons we're having this meeting, but first I'd like to turn it over to Dr. Shelli Avenevoli, the Deputy Director of the National Institute of Mental Health. DR. SHELLI AVENEVOLI: Great. Good morning everyone. Welcome to DC. You actually caught a really great week to come to DC. We've not had so many of those lately. Hopefully at lunch time, you can get out and have a stroll and just enjoy the nice spring weather here. I want to welcome you on behalf of NIMH and our Director Joshua Gordon, who apologizes that he cannot be here today. He has a competing commitment at the American Psychiatric Association in California. NIMH is very pleased to host this meeting. This meeting is in conjunction with 11 the prior workgroup meeting, focused on the broader health needs of individuals on the autism spectrum. This one focuses on the mental health needs. This fits very squarely into the NIMH wheelhouse. It is part of our mission. As all of you probably know, NIMH not just funds autism research, but the research on the full spectrum of mental health disorders, all the way from the basic science, trying to understand the causes of our disorders through translation of that into new, novel, and effective interventions and services for people in need. We are very pleased to host this workshop. There is a number of staff here as well so please make sure you interact with them during the break. And thank you very much for your time and enjoy your time today. Thanks. 12 DR. DANIELS: Thank you, Shelli. And I'd like to give a couple of minutes to our chairs of this working group, Dr. Julie Taylor and Dr. David Amaral, to say welcome as well. DR. JULIE TAYLOR: Hello everybody. Welcome. On behalf of the working group, we are really thrilled that you are all able to join us, many of you for the second time for these meetings and some for the first. As we've been having our discussion in the working group after the first meeting, it became very clear very quickly that issues of mental health – it was a set of issues that we really needed to devote some significant time to. You will see that today we devote significant time to these issues and there's a lot to cover. It's a really packed day, but I think as we were trying to put together the agenda, there are a lot of really important 13 issues that we wanted to at least touch on and have some conversation around. We'll all have to bear down and be ready for kind of a whirlwind day I think of mental health and autism. But I think we'll have some nice conversation and really looking forward to what we hear. DR. DAVID AMARAL: Thank you, Julie, and thank you all for being here. I really appreciate you taking time out of your busy schedules to join us as well. Beyond what Susan and Julie have said, I just want to also reiterate that the reason we've called you all together is to gather initial testimony, but we do plan to have a document that will come out of these meetings.
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