1 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES INTERAGENCY AUTISM COORDINATING COMMITTEE FULL COMMITTEE MEETING TUESDAY, DECEMBER 14, 2010 The Committee met in The Grand Ballroom, Salons A-D, of the Pooks Hill Marriott, 5151 Pooks Hill Road, Bethesda, Maryland at 10:00 a.m., Thomas Insel, Chair, presiding. PARTICIPANTS: THOMAS INSEL, M.D., Chair, National Institute of Mental Health (NIMH) DELLA HANN, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), National Institute of Mental Health (NIMH) SUSAN DANIELS, Ph.D., Office of Autism Research Coordination (OARC), National Institute of Mental Health (NIMH) JAMES BATTEY, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD) ELLEN BLACKWELL, M.S.W., Centers for Medicare & Medicaid Services (CMS) COLEEN BOYLE, Ph.D., Centers for Disease Control and Prevention (CDC) NEAL R. GROSS COURT REPORTERS AND TRANSCRIBERS 1323 RHODE ISLAND AVE., N.W. (202) 234-4433 WASHINGTON, D.C. 20005-3701 www.nealrgross.com 2 PARTICIPANTS (continued): JOSEPHINE BRIGGS, M.D., National Center for Complementary and Alternative Medicine (NCCAM) (representing Francis Collins, M.D., Ph.D.) HENRY CLAYPOOL, U.S. Department of Health and Human Services (DHHS), Office on Disability (attended by phone) JUDITH COOPER, Ph.D., National Institute on Deafness and other Communication Disorders (NIDCD)(representing James Battey, M.D., Ph.D.) GERALDINE DAWSON, Ph.D., Autism Speaks GERALD FISCHBACH, M.D., Simons Foundation LEE GROSSMAN, Autism Society (attended by phone) ALAN GUTTMACHER, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) GAIL HOULE, Ph.D., U.S. Department of Education 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.) SHARON LEWIS, Administration for Children and Families (ACF) CHRISTINE MCKEE, J.D. 3 PARTICIPANTS (continued): ARI NE'EMAN, Autistic Self-Advocacy Network (ASAN) LYN REDWOOD, R.N., M.S.N., Coalition for SafeMinds DENISE RESNIK, Southwest Autism Research and Resource Center (SARRC)(attended by phone) STEPHEN SHORE, Ed.D., Autism Spectrum Consulting (attended by phone) ALISON TEPPER SINGER, M.B.A., Autism Science Foundation (ASF) MARJORIE SOLOMON, Ph.D., M.B.A., University of California, Davis and M.I.N.D. Institute PETER VAN DYCK, M.D., M.P.H., Health Resources and Services Administration (HRSA) 4 TABLE OF CONTENTS Call to Order and Opening Remarks Dr. Thomas Insel...................... 5 Review and Approval of Minutes ............ 21 Strategic Plan Update - Discussion and Votes.................................. 24 Public Comments Idil Abdul .......................... 137 JaLynn Prince ....................... 146 Strategic Plan Update - Discussion and Votes (continued)............................... 153 Update: Report on Somali Community Autism Issue Dr. Coleen Boyle .................... 293 Dr. Cindy Lawler .................... 295 Dr. Geraldine Dawson ................ 296 Update: IACC Subcommittee on Safety Alison Tepper Singer ................ 299 Update: IACC Services Subcommittee Ellen Blackwell .................... 312 Lee Grossman ........................ 331 Public Comments Discussion Period ........ 354 Final Discussion on Chapter 1 Dr. Alan Guttmacher ................. 376 Adjournment............................... 379 5 PROCEEDINGS 10:04 a.m. Dr. Insel: Do we have our audio link and at this point, webcast link live? Dr. Shore: I can hear you. I don't know if you can hear me. Dr. Insel: Who's that? Who is speaking? Dr. Shore: Oh, this is Stephen Shore. Dr. Insel: Hello, Stephen. This is Tom. Dr. Shore: Hi, Tom. Dr. Insel: Let me just make sure that the web link is also up and running. Dr. Shore: I can see it on here. Dr. Insel: Good. All right. Assuming that we are good to go, let me welcome everybody to a meeting of the full Interagency Autism Coordinating Committee. We have several people around the table so we will do a quick around the table and then also 6 take attendance for who is on the phone with us, so those who are listening in will have a full roster to be able to identify. I'll start. This is Tom Insel. I am chair of the IACC and to my left -- Dr. Hann: I am Della Hann. I am the Acting Executive Secretary for the IACC. Ms. Singer: I am Alison Singer. I am the President of the Autism Science Foundation and I have a 13-year-old daughter diagnosed with autism and I also serve as the legal guardian for my older brother who is diagnosed with autism. Dr. Koroshetz: Walter Koroshetz, I am the Deputy Director of the National Institute of Neurological Disorders and Stroke. Mr. Ne'eman: Ari Ne'eman, President of the Autistic Self-Advocacy Network and an adult on the autism spectrum. Ms. Blackwell: Ellen Blackwell, Centers for Medicare & Medicaid Services. I 7 also have a 23-year-old adult son with autism. Dr. Lawler: Cindy Lawler, I am representing National Institute of Environmental Health Sciences for our Director today, Linda Birnbaum, who may be joining us by phone later this afternoon. Dr. Solomon: I am Marjorie Solomon and I represent the M.I.N.D. Institute. Dr. Boyle: I am Coleen Boyle, representing the Centers for Disease Control and Prevention. Ms. McKee: Christine McKee, parent of an 11-year-old girl with autism. Dr. Battey: Jim Battey, the Director of National Institute on Deafness and Other Communication Disorders. Ms. Redwood: Hi, Lyn Redwood, Executive Director of the Coalition for SafeMinds, also the mother of a 16-year-old son who has essentially recovered from autism. Dr. Daniels: Hi, I'm Susan Daniels, Deputy Director of the Office of Autism 8 Research Coordination at NIMH. Dr. Insel: And if we could quickly do a round of who is on the phone. We have heard from Stephen Shore. Who else is with us on the phone? Ms. Resnik: This is Denise Resnik, co-founder of the Southwest Autism Research and Resource Center and mother of a 19-year- old son with autism. Dr. Insel: Welcome. Anyone else on the phone with us at this point? I think Yvette will be joining us by phone, as will Larke Huang, and I believe that Alan Guttmacher will be arriving about 1:30. Francis Collins will not be here but, as in previous meetings, Josie Briggs will arrive to represent him about one o'clock. So welcome, everybody. This is really in some ways a business meeting. There's a lot of work that the committee needs to get through. It's part of our obligation each year to complete an update of the 9 Strategic Plan and we will be doing that for much of the day. We also have some subcommittees to hear from. So it will be, I think, an active day of getting some of the committee's obligations under way. Before we start that, I wanted to take just a couple of minutes to share with you this enormous amount of science that has taken place just since the last time we met, which was October 22. You know, we used to do this at every meeting, we would take the first five minutes or so just to do an update on scientific breakthroughs or hot things that are happening in the world of research. We haven't done that for a while because we have been so busy with other tasks and we have also had scientific presentations. But since we won't be doing that today, let me just take you on a very quick tour of the last eight weeks, or actually only seven weeks in autism research. 10 First of all, to mention that the Society for Neuroscience meeting this year in San Diego had 32,000 people in attendance, which was, I think, a record. This year there were sort of two emerging, what were called hot topics that people were talking about a lot. One was optogenetics, which is a technology that allows us to do circuit- breaking in the brain, but perhaps more relevant to this group was that autism really emerged as one of the most exciting areas for science. There were 337 abstracts at the meeting, which is about a 30 percent increase from where we were last year and probably about a tenfold increase from where we were a decade ago. So this is just an enormous change. One of the initial events largely, probably one of the largest attended event, which was for the public on the first day of 11 the meeting, is a public symposium that this year was dedicated to autism research and was chaired by Gerry Fischbach, had a number of outstanding scientists in attendance, as well as both a scientific audience as well as members of the public. It's been just an extraordinary eight weeks if you think about what is actually coming out. Initially, this paper in the Journal of Neuroscience which described for the first time what might be called a brain biomarker for autism. This was looking at structural differences in the cortex using high field strength imaging. It used five different parameters for measuring the structure of the cortex and then it asked in a kind of agnostic way, using a very elegant computational method, which was really a kind of machine- based learning approach, what is the difference between 20 people with autism -- these were adults -- and 20 people without. 12 And they were able to identify this kind of map here, which may be a little hard to see, but had a 90 percent sensitivity, 80 percent specificity for separating the autism from the control subjects. So it was the first hint, at least as a proof of concept, we may even be able to do something in the basis of structural differences in cortex that will help to serve as a potential biomarker.