U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES INTERAGENCY AUTISM COORDINATING COMMITTEE FULL COMMITTEE MEETING TUESDAY, JULY 19, 2016 The full Interagency Autism Coordinating Committee (IACC) convened in Bethesda, Maryland, at the National Institutes of Health (NIH), Building 31, C Wing, 6th Floor, 31 Center Drive, Conference Room 10, at 9:04 a.m., Bruce Cuthbert, Ph.D., Chair, presiding. PARTICIPANTS: BRUCE CUTHBERT, Ph.D., Chair, National Institute Of Mental Health, National Institutes of Health (NIMH) SUSAN DANIELS, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), NIMH DAVID AMARAL, Ph.D., University of California (UC), Davis MIND Institute JAMES BALL, Ed.D., B.C.B.A.-D., JB Autism Consulting JAMES F. BATTEY, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD) JUDITH A. COOPER, Ph.D., (for James F. Battey, M.D., Ph.D.), National Institute on Deafness and Other Communication Disorders (NIDCD) 1 SAMANTHA CRANE, J.D., Autistic Self Advocacy Network GERALDINE DAWSON, Ph.D., Duke University RUTH ETZEL, M.D., Ph.D., Office of Children's Health Protection, U.S. Environmental Protection Agency (EPA) AMY GOODMAN, M.A., Self-Advocate SHANNON HAWORTH, M.A., Association of University Centers on Disabilities (AUCD) ALICE KAU, Ph.D., (for Catherine Spong, M.D.), Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) LAURA KAVANAGH, MPH, Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA) WALTER K. KOROSHETZ, M.D., National Institute of Neurological Disorders and Stroke (NINDS) CINDY LAWLER, Ph.D. (for Linda Birnbaum, Ph.D.), National Institute of Environmental Health Sciences (NIEHS) BRIAN PARNELL, M.S.W., C.S.W, Utah Department of Human Services EDLYN PENA, Ph.D., California Lutheran University LOUIS REICHARDT, Ph.D., Simons Foundation Autism Research Initiative ROBERT RING, Ph.D., Autism Speaks 2 JOHN ELDER ROBISON, College of William and Mary STUART K. SHAPIRA, M.D., Ph.D., Centers for Disease Control and Prevention (CDC) ALISON TEPPER SINGER, M.B.A., Autism Science CATHERINE SPONG, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) JULIE LOUNDS TAYLOR, Ph.D., Vanderbilt University LARRY WEXLER, Ed.D., U.S. Department of Education (ED) NICOLE WILLIAMS, Ph.D., U.S. Department of Defense (DoD)(attended by phone) 3 TABLE OF CONTENTS Welcome, Introductions, Roll Call and Approval of Minutes .............................. 7 Update from HHS Office of the Assistant Secretary For Health ............................ 11 Update on Autism Society Lifespan-Based Strategy ........................................ 18 Update on Autism Policy ......................... 32 Update on Simons Foundation Powering Autism Research for Knowledge .......................... 53 National Autism Indicators Report: Vocational Rehabilitation .................................. 75 Parents' Perceptions about Supporting Students with Autism to Transition to College .. 107 Committee Business ............................. 132 Oral Public Comment Session .................... 183 IACC Committee Member Discussion of Public Comments ....................................... 237 Discussion of Nominated 2016 Science Advances .. 252 Panel on Challenging Behaviors in Autism ....... 281 Discussion ..................................... 327 Round Robin .................................... 368 Closing Remarks ................................ 390 4 PROCEEDINGS DR. BRUCE CUTHBERT: Good morning, everyone. Welcome to our July 2016 meeting of the IACC, and welcome to the July weather in Washington for all of those of you who came in from out of town, as did I sleeping in 50-degree nights a few days ago, so I'm re-acclimating myself. We're happy to have you all here. We will be joined today as well by Dr. Thomas Novotny, the HHS national autism coordinator and deputy assistant secretary for health. He is not here as yet, but he should be here shortly and we will look forward to having him join us as a guest of the committee. We'd also like to welcome Dr. Stuart Shapira as a new member of the IACC. He is replacing Dr. Cynthia Moore, who was called away to take on additional responsibilities with respect to the Zika virus outbreak and containing that. So, Dr. Shapira, I wonder if you would like to 5 tell the committee about your expertise and your work as it relates to autism. DR. STUART SHAPIRA: Sure. Thank you very much. So, again, I'm Stuart Shapira. I'm trained as a pediatrician and as a clinical geneticist, metabolic geneticist, and molecular geneticist. I trained at Baylor -- I trained -- I'm sorry. So I trained at University of Chicago and then did further clinical training at Harvard and at Children's Hospital in Boston. After training, I started clinical work at Baylor College of Medicine in Houston and then moved to the University of Texas Health Science Center in San Antonio and practiced clinical genetics and metabolic genetics for 14 years. I came to the CDC 11 years ago. I was originally on the Pediatric Genetics Team at the CDC coordinating genetics components of several large case control studies, including the autism research study at CDC, SEED, the Study to Explore 6 Early Development. And I'm the PI on the dysmorphology part of SEED. I moved into the position of the associate director for science and chief medical officer for the National Center on Birth Defects and Developmental Disabilities at CDC three years ago and have been serving in that capacity. And I'm very excited to be here. I look forward to meeting everyone on the committee. Thank you very much. DR. CUTHBERT: Thank you. We will appreciate having your expertise to inform our decisions, so welcome. Okay. Now, I'm happy to turn it over to Dr. Susan Daniels, the coordinator of our Autism Committee at NIMH, and I want to take this opportunity to thank Susan, as always, for doing virtually 100 percent of the work or leading her group who do all the work to put together the agenda, get everything all ready, and have us 7 prepared for the meeting. So, Susan, thank you, and I'll turn it over to you to take the roll and approve the minutes of the last meeting. DR. SUSAN DANIELS: Thank you. Welcome, everyone, and thank you to the team for all your work getting us ready for this meeting. I'd like to take the roll first to see who's here. So Bruce Cuthbert? DR. CUTHBERT: Here. DR. DANIELS: Jim Battey? DR. JAMES BATTEY: Here. DR. DANIELS: Cindy Lawler? DR. CINDY LAWLER: Here. DR. DANIELS: Jennifer Johnson and Aaron Bishop are not going to be here today, and Francis Collins and Josie Briggs will not be here today. Ruth Etzel? DR. RUTH ETZEL: I'm here. DR. DANIELS: Tiffany Farchione? (No response.) 8 DR. DANIELS: Melissa Harris is not going to be here today. Elisabeth Kato will not be here today. Laura Kavanagh? DR. LAURA KAVANAGH: Here. DR. DANIELS: Walter Koroshetz? DR. WALTER KOROSHETZ: Here. DR. DANIELS: Stuart Shapira? DR. SHAPIRA: Here. DR. DANIELS: And Linda Smith and Shantel Meek will not be here. Cathy Spong? DR. CATHERINE SPONG: Here. DR. DANIELS: Larry Wexler? DR. LARRY WEXLER: Here. DR. DANIELS: Nicole Williams? DR. NICOLE WILLIAMS: Here on the phone. DR. DANIELS: Oh, thanks. David Amaral? DR. DAVID AMARAL: Here. DR. DANIELS: Jim Ball? 9 DR. JIM BALL: Here. DR. DANIELS: Samantha Crane I believe is on her way. Geri Dawson? DR. GERI DAWSON: Here. DR. DANIELS: Amy Goodman? MS. AMY GOODMAN: Here. DR. DANIELS: Shannon Haworth? MS. SHANNON HAWORTH: Here. DR. DANIELS: David Mandell is not going to be with us today. Brian Parnell? MR. BRIAN PARNELL: I am here. DR. DANIELS: Kevin Pelphrey is not going to be able to make it today. Edlyn Pena? DR. EDLYN PENA: Here. DR. DANIELS: Louis Reichardt? (No response.) DR. DANIELS: He may be on his way. 10 Rob Ring? DR. ROB RING: Here. DR. DANIELS: John Robison? MR. JOHN ROBISON: Yep. DR. DANIELS: Alison Singer? MS. ALISON SINGER: Here. DR. DANIELS: Julie Taylor? DR. JULIE TAYLOR: Here. DR. DANIELS: Wonderful. DR. CUTHBERT: Thank you. DR. DANIELS: So perfect timing. DR. CUTHBERT: Thank you. DR. DANIELS: Would you like to -- DR. CUTHBERT: Yeah, let me just -- DR. DANIELS: -- say anything? DR. CUTHBERT: -- Let me break in here to welcome Dr. Thomas Novotny, as I mentioned, the HHS national autism coordinator and deputy assistant secretary for health. Welcome, Dr. Novotny. 11 DR. THOMAS NOVOTNY: Thanks. Are we on here? Okay, great. Nice to see you again. Sorry for my delay but traffic coming up here from HHS building in downtown D.C. is sometimes unpredictable, so I got here a little bit late. But thanks for the opportunity to come and say hello. I'll just give you a very, very, very brief update because this is a slow-moving process of trying to mobilize resources within HHS to accommodate the report requirements that are -- is the main sort of deliverable that I need to produce as a result of the Autism CARES Act. We've assembled a working group of representatives from across the Department with equities in autism care and have set up our first meeting of the group to lay out our report content on August 29. And this will be then the sort of kickoff to the development of the report, which we anticipate being able to produce by the end of this calendar year. Things do get in the way 12 sometimes, but I'm pretty confident that we can do that. We've got a good sense of an outline on this. It's, again, devoted towards -- specifically towards the transition period, which I know there's going to be a subject matter discussion this morning, which I'm looking forward to hearing. And it will involve representatives from several of the agencies in the writing of this. As you I think also know that we do not have any appropriations for the work of this coordination activity, but we are going to be able to do this within the confines of our existing resources, and I think we'll be able to come up a reasonable interim report.