1 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES INTERAGENCY AUTISM COORDINATING COMMITTEE FULL COMMITTEE MEETING TUESDAY, NOVEMBER 17, 2015 The full Interagency Autism Coordinating Committee (IACC) convened in Rockville, Maryland, at the National Institute on Alcohol Abuse and Alcoholism (NIAAA), Fishers Lane Conference Center, 5635 Fishers Lane, Room 508/509/510, at 9:36 a.m., Bruce Cuthbert, Ph.D., Chair, presiding. PARTICIPANTS: BRUCE CUTHBERT, Ph.D., Chair, IACC, National Institute of Mental Health (NIMH) SUSAN DANIELS, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), NIMH JAMES BALL, Ed.D., B.C.B.A.-D., JB Autism Consulting JAMES BATTEY, M.D., Ph.D., National Institute on Deafness and Other Communications Disorders (NIDCD) AARON BISHOP, M.S.S.W., Administration for Community Living (ACL) FRANCIS COLLINS, M.D., Ph.D., National Institutes of Health (NIH) JUDITH COOPER, Ph.D., NIDCD (representing James Battey, M.D., Ph.D.) SAMANTHA CRANE, J.D., Autistic Self-Advocacy Network (ASAN) GERALDINE DAWSON, Ph.D., Duke University AMY GOODMAN, M.A., Autism Now Center 2 PARTICIPANTS (continued): SHANNON HAWORTH, M.A., Association of University Centers on Disabilities (AUCD) JENNIFER JOHNSON, Ed.D., ACL (representing Aaron Bishop, M.S.S.W.) ELISABETH KATO, M.D., M.R.P., Agency for Healthcare Research and Quality (AHRQ) ALICE KAU, Ph.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (representing Catherine Spong, M.D.) LAURA KAVANAUGH, M.P.P., Health Resources and Services Administration (HRSA) WALTER KOROSHETZ, M.D., National Institute of Neurological Disorders and Stroke (NINDS) CINDY LAWLER, Ph.D., National Institute of Environmental Health Sciences (NIEHS) (representing Linda Birnbaum, Ph.D.) CYNTHIA MOORE, M.D., Ph.D., Centers for Disease Control and Prevention (CDC) BRIAN PARNELL, M.S.W., C.S.W, Utah Department of Human Services KEVIN PELPHREY, Ph.D., Yale University EDLYN PENA, Ph.D., California Lutheran University LOUIS REICHARDT, Ph.D., Simons Foundation Autism Research Initiative ROBERT RING, Ph.D., Autism Speaks JOHN ELDER ROBISON, College of William and Mary ALISON TEPPER SINGER, M.B.A., Autism Science Foundation (ASF) 3 PARTICIPANTS (continued): JULIE LOUNDS TAYLOR, Ph.D., Vanderbilt University LARRY WEXLER, Ed.D., Department of Education NICOLE WILLIAMS, Ph.D., Department of Defense (DoD) 4 TABLE OF CONTENTS Call to Order .................................... 5 Welcome and Opening Remarks ...................... 8 Dr. Francis Collins, M.D., Ph.D. ................ 14 Introduction of New and Returning IACC Members .................................... 26 Committee Business .............................. 53 Oral Public Comment Session .................... 117 IACC Committee Member Discussion of Public Comments ........................... 171 Committee Member Updates ....................... 196 Closing Comments ............................... 286 Adjournment .................................... 289 5 PROCEEDINGS: Dr. Susan Daniels: Good morning. It's my pleasure to welcome you all, members of the IACC and our new chair, Dr. Bruce Cuthbert, and Dr. Francis Collins, Director of NIH, as well as members of the public who might be listening on the phone or in the audience or watching our webcast. We've been looking forward to this day for a while, and we are excited to be working through a full agenda to talk about updates that have happened in the last several months and to get started on Committee business. So I'd like to begin by taking a roll call of all the members of the Committee. Bruce Cuthbert? Dr. Bruce Cuthbert: Here. Dr. Daniels: Jim Battey? Dr. James Battey: Here. Dr. Daniels: Linda Birnbaum? Oh, Cindy Lawler? Dr. Cindy Lawler: [Off-mike response.] Dr. Daniels: Jennifer Johnson for Aaron Bishop? Dr. Jennifer Johnson: [Off-mike response.] Dr. Daniels: Francis Collins? 6 Dr. Francis Collins: Present. Dr. Daniels: Ruth Etzel is our new member from the EPA, and I don't believe we have a representative from the EPA here on her behalf. Correct? She was not able to be here, but in the future will be. So EPA is one of the agencies that is going to be joining us. Tiffany Farchione, I believe, is also not going to be able to be here from the FDA. Michelle Harris? [No response.] Dr. Daniels: Maybe will come later. Elisabeth Kato? Dr. Elisabeth Kato: Here. Dr. Daniels: Thank you. Laura Kavanagh? Ms. Laura Kavanagh: Here. Dr. Daniels: Walter Koroshetz? Dr. Walter Koroshetz: Here. Dr. Daniels: Cindy Moore? Dr. Cynthia Moore: [Off-mike response.] Dr. Daniels: Linda Smith or Shantel Meek for ACF I believe are not going to be here today. Dr. Daniels: Catherine Spong? Oh, Alice Kau? Dr. Alice Kau: Is here. Dr. Daniels: Larry Wexler? 7 Dr. Larry Wexler: [Off-mike response.] Dr. Daniels: And Nicole Williams? Dr. Nicole Williams: [Off-mike response.] Dr. Daniels: Among our Federal members. So now public members. Dr. David Amaral was not able to be here today but will be here in January. Jim Ball? Dr. James Ball: Here. Dr. Daniels: Samantha Crane? Ms. Samantha Crane: [Off-mike response.] Dr. Daniels: Geri Dawson? Dr. Geraldine 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 here today but will join us by phone around 3:00 p.m. Brian Parnell? Mr. Brian Parnell: Here. Dr. Daniels: Kevin Pelphrey? Dr. Kevin Pelphrey: Here. Dr. Daniels: Edlyn Pena? Dr. Edlyn Pena: [Off-mike response.] 8 Dr. Daniels: Louis Reichardt? Dr. Louis Reichardt: Here. Dr. Daniels: Robert Ring? Dr. Robert Ring: Here. Dr. Daniels: John Robison? Mr. John Robison: Here. Dr. Daniels: Alison Singer? Ms. Alison Singer: Here. Dr. Daniels: And Julie Taylor? Dr. Julie Taylor: [Off-mike response.] Dr. Daniels: Well, welcome to you all. And I'd like to turn this over now to Dr. Bruce Cuthbert, our chair. Dr. Cuthbert: Good morning, everyone. And welcome to this first meeting of the newly reconstituted IACC. It's a pleasure for me to be here to take over as the new chair of this group, and I want to thank Dr. Francis Collins for appointing me to this position. I'm looking forward to what we can all accomplish together in the coming months. As you know, Dr. Tom Insel left NIMH in -- at the end of October. He did not retire, but rather is continuing his efforts in the mental health sphere, having moved to Google Life Sciences to 9 work on opportunities for big data and things that can be accomplished with the resources that Google has in the computational space. I know that Dr. Insel played a very important role in leading NIMH's -- the NIH's autism efforts and this Committee over the past 13 years, and I want to acknowledge all his service and efforts in this regard. His leadership will be missed very much, but we will plan to go forward at full speed with our important business. And I'm certainly looking forward to getting to know all of you. As you know, the IACC was reauthorized by the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014. And after a year's hiatus, during which the nomination and appointment process was conducted, we're now all together and appointed and ready to get to work. It takes time to get these things done because this is actually one of the few committees which has an open nomination process, which, of course, involves the opportunity to have nominations and time to vet everyone through. But we are glad that we are finally together. I do want to welcome all of the new members of this group and also to thank and welcome back all 10 the returning members who've signed up for another term with us to work on all of our different issues. The group at this table, indeed, represents a broad array of perspectives and expertise that will be extremely helpful to us as our Committee carries out its responsibilities to inform and advise the HHS Secretary on issues related to all matters pertaining to autism. I should mention that among our Federal agencies, there are some continuing agencies and some new representatives who will be serving. I would like to note in particular two changes that we have. First, the Environmental Protection Agency, EPA, has joined as a member of the IACC. As you just heard, Dr. Ruth Etzel will be our representative, but she was not able to join us today. But we'll trust that she can join us in January. And also the Agency for Healthcare Research and Quality, or AHRQ, is rejoining the IACC, represented by Dr. Elisabeth Kato, whom I heard somewhere is here at the table? Thank you. Good morning. So I just wanted to tell you a little bit about my own background in taking over as chair of 11 the Committee. I had been at NIMH since 1998 with a 4-year hiatus while I was at the University of Minnesota on the psychology faculty. My major area of research has been of the psychophysiology of emotion and anxiety disorders and looking at individual differences in mood and anxiety disorders. However, I have a long background with autism research. In fact, the first study I carried out in my scientific career was my undergraduate psychology thesis looking at an operant conditioning therapy for a young child who had minimal speech, and they were working on operant conditioning techniques to improve his speech functioning in the tradition of Ivar Lovaas, one of the first great behavior therapists who worked on treatments for early autism. I've also had a lot of experience with autism through my own family's work. My wife is a doctoral-level educator who has been the supervisor of Section 504 disability programs and has led lots of IEPs and other work, both in schools and at district levels, for autism services.