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Transcript for the IACC Full Committee Meeting on July 9, 2013

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Transcript for the IACC Full Committee Meeting on July 9, 2013 1 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES INTERAGENCY AUTISM COORDINATING COMMITTEE FULL COMMITTEE MEETING TUESDAY, JULY 9, 2013 The Interagency Autism Coordinating Committee (IACC) met in Room 10, Sixth Floor, C Wing, Building 31, 31 Center Drive, Bethesda, Maryland, from 9:09 a.m. until 5:28 p.m., Thomas Insel, Chair, presiding. PRESENT: THOMAS INSEL, M.D., Chair, IACC, National Institute of Mental Health (NIMH) SUSAN DANIELS, Ph.D., Executive Secretary, IACC, NIMH IDIL ABDULL, Somali American Autism Foundation JAMES BALL, Ed.D., BCBA-D, JB Autism Consulting and Autism Society of America (attended by phone) ANSHU BATRA, M.D., Our Special Kids JAMES BATTEY, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD) 2 PRESENT (continued): LINDA BIRNBAUM, Ph.D., National Institute of Environmental Health Sciences (NIEHS) (attended by phone) COLEEN BOYLE, Ph.D., M.S.Hyg., U.S. Centers for Disease Control and Prevention (CDC) JOSEPHINE BRIGGS, M.D., National Center for Complementary and Alternative Medicine (NCCAM) SALLY BURTON-HOYLE, Ed.D., Eastern Michigan University MATTHEW CAREY, Ph.D., Left Brain Right Brain (attended by phone) JAN CRANDY, Nevada State Autism Treatment Assistance Program and Nevada Commission on Autism Spectrum Disorders GERALDINE DAWSON, Ph.D., Duke University DENISE DOUGHERTY, Ph.D., Agency for Healthcare Research and Quality (AHRQ) TIFFANY FARCHIONE, M.D., U.S. Food and Drug Administration (FDA) ALAN GUTTMACHER, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) LAURA KAVANAGH, M.P.P., Health Resources and Services Administration (HRSA) DONNA KIMBARK, Ph.D., U.S. Department of Defense (DoD) WALTER KOROSHETZ, M.D., National Institute of Neurological Disorders and Stroke (NINDS) 3 PRESENT (continued): SHARON LEWIS, Administration for Intellectual and Developmental Disabilities, Administration for Community Living (ACL) (attended by phone) DAVID MANDELL, Sc.D., University of Pennsylvania JOHN O'BRIEN, M.A., Centers for Medicare & Medicaid Services (CMS) (attended by phone) LYN REDWOOD, R.N., M.S.N., Coalition for SafeMinds SCOTT ROBERTSON, M.H.C.I., Autistic Self Advocacy Network (ASAN) JOHN ROBISON, Self-Advocate, Parent, and Author ALISON SINGER, M.B.A., Autism Science Foundation (ASF) LARRY WEXLER, Ed.D., U.S. Department of Education (ED) ALSO PRESENT: TIMOTHY BUIE, M.D., Massachusetts General Hospital for Children JILL ESCHER, Escher Fund for Autism WENDY FOURNIER, National Autism Association RICHARD FRYE, M.D., Ph.D., University of Arkansas for Medical Sciences ALYCIA HALLADAY, Ph.D., Autism Speaks PORTIA IVERSEN, Parent and Advocate 4 ALSO PRESENT: ROBERT LOWERY, National Center for Missing and Exploited Children SHANTEL MEEK, M.S., Administration for Children and Families (ACF) JAMES PERRIN, M.D., Massachusetts General Hospital JEFF SLOWIKOWSKI, U.S. Department of Justice (DoJ) LEE WACHTEL, M.D., Kennedy Krieger Institute 5 TABLE OF CONTENTS: Welcome and Opening Remarks Susan Daniels .......................... 7 Opening Remarks Alan Guttmacher ........................ 8 Roll Call and Approval of Minutes Susan Daniels ......................... 11 Racial and Ethnic Differences in Subspecialty Service Use by Children With Autism James Perrin .......................... 15 Commentary on Parent-Physician Efforts To Address Wandering James Perrin .......................... 44 Panel on Comorbid Conditions in People With Autism Comorbidities Among Patients Served by the Autism Treatment Network James Perrin .......................... 57 Gastrointestinal Disorders in Patients With Autism Timothy Buie .......................... 80 Catatonia in Autism Spectrum Disorders Lee Wachtel .......................... 105 Immune and Metabolic Conditions in Patients With Autism Population Richard Frye ......................... 133 Committee and Panel Discussion ............ 151 Meeting Report: Environmental Epigenetics Symposium Alycia Halladay ...................... 174 Jill Escher .......................... 188 Rethinking Nonverbal Autism Portia Iversen ....................... 206 6 TABLE OF CONTENTS (continued): Lunch ..................................... 240 Oral Public Comments Session .............. 240 IACC Discussion of Public Comments ........ 289 PANEL ON WANDERING: Wandering and Autism: What We Know, What We Need Wendy Fournier ....................... 302 IACC Activities To Address Wandering Alison Singer ........................ 329 The AMBER Alert Program Robert Lowery ........................ 338 Jeff Slowikowski ..................... 367 Committee and Panel Discussion ............ 375 Tips for Early-Care and Education Providers Shantel Meek ......................... 409 Science Update Susan Daniels ........................ 423 DSM-5 Planning Group Update Geraldine Dawson ..................... 428 OARC and IACC Business Update and Discussion Susan Daniels ........................ 431 Round Robin and Open Committee Discussion ................................ 456 Adjournment ............................... 481 7 PROCEEDINGS: Dr. Susan Daniels: Thanks. I just wanted to check to make sure we have a quorum so we can start our meeting. I'd like to welcome everyone to this meeting of the IACC today, July 9th, 2013. We're really looking forward to a great meeting. We have a packed agenda as usual. Today, Dr. Insel is going to be joining us a little bit late, because he had a new grandbaby last night and has some grandfatherly duties to do this morning and will be here as soon as possible. But in the meantime, Dr. Alan Guttmacher from NICHD will be sitting in for him as chair. So, we are really looking forward to a number of panels and presentations today that will really help to inform our Committee and the listening public. And we want to welcome all those that are listening online and to our webcast and to the phone line. 8 Dr. Guttmacher, do you have any comments that you'd like to make, welcoming folks? Dr. Alan Guttmacher: Just that I was delighted – Tom sensibly asked late last night if I would sit in chairing for him. I'm delighted to do it anyway, but of course as the Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, it's important to us that children get off to a good start. And having grandfatherly attention is part of that. So, I'm very happy that Tom will be joining us a little bit later and taking over the reins when he's here. I think, rather than going all the way around and reintroducing ourselves to each other because the faces are fairly much the same, there have been a couple of changes we thought we might mention in terms of the makeup of the Committee. One is that Dennis Choi has stepped down from the Committee. And the second, we're very 9 glad to see that Geri Dawson is still around the table, but she's wearing a slightly different hat than she has in the past. So, we thought we might have Geri tell us a little bit about that. Dr. Geraldine Dawson: Thank you, Alan. Well, as you know, I've had a wonderful five and a half years at Autism Speaks, but I am eager to return to my roots as a scientist and also as a clinician working directly with families. And I'm going to be joining the faculty in the Departments of Psychiatry, Pediatrics, and Psychology at Duke University, where I'll be establishing a new Center for Autism Diagnosis and Treatment and codirecting the Developmental Neuroscience Research Program there. Dr. Guttmacher: Thanks, Geri, and we all congratulate you on that and look forward to you continuing to do great things for the autism world in your role. 10 Our first speaker today, James Perrin – you have full biographies for all of the speakers in front of you but just to briefly introduce Dr. Perrin, it's tempting to say he has done everything in pediatrics in his career, but that actually would be a lie. He has not been the president of the American Academy of Pediatrics, but he is the President Elect. So, as of January 1st, we can say he will have done just about everything in terms of leadership in American pediatrics in general. But, specifically, he's long been interested in issues around autism and both in terms of research and clinical care has had a real role in that through his life at MassGeneral, at Massachusetts General Hospital. And, again, read the full biography to get the full note, but he's certainly an expert to speak to us about – you'll see we have him double-billed – but the first of his 11 two tasks is to talk to us a bit about racial and ethnic differences in subspecialty service use for children with autism. Jim. Dr. Daniels: Alan, can I step back just for a second to do roll call and – Dr. Guttmacher: Oh, absolutely. Excuse me. Dr. Daniels: Sorry about that. Dr. Guttmacher: We have to approve the minutes, too. Dr. Daniels: And we need to approve the minutes. We have a couple of housekeeping items, but we are really looking forward to hearing from Dr. Perrin. So, we will get to that as soon as possible. I'd like to quickly go through the roll call. I know that Dr. Tom Insel is not here, but will be joining us. (Roll call) Dr. Daniels: All right. So, we have a quorum for the meeting. I'd also like to turn your attention to the minutes, the draft 12 minutes that I sent around to the Committee from the last meeting on April 9th. I did have a couple of comments come to me by email. Does anyone else have any comments that they want to have us add or delete or change anything in the draft minutes? (No response) Dr. Daniels: Seeing no comments on the minutes, do we have a motion on the floor to accept the minutes? Mr. John Robison: So moved. Dr. Daniels: Second? Dr. Denise Dougherty: Second. Dr. Daniels: All in favor? (Chorus of ayes) Dr. Daniels: Any opposed? Any abstaining? The motion carries to accept the minutes with the changes that were sent to me online, and they will be posted on the Internet very soon on the IACC Website. I'd also like to bring to your attention 13 that we posted all of the meeting materials for this meeting up on the Website.
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