1 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES INTERAGENCY AUTISM COORDINATING COMMITTEE FULL COMMITTEE MEETING FRIDAY, JULY 16, 2010 The Committee met in the Congressional Ballroom of the Bethesda Marriott, 5151 Pooks Hill Road, Bethesda, Maryland, at 10:00 a.m., Thomas Insel, Chair, presiding. PRESENT: THOMAS R. INSEL, M.D., IACC Chair, National Institute of Mental Health DELLA HANN, Ph.D., IACC Executive Secretary, Office of Autism Research Coordination, National Institute of Mental Health SUSAN DANIELS, Ph.D., Office of Autism Research Coordination, National Institute of Mental Health LINDA BIRNBAUM, Ph.D., National Institute of Environmental Health Sciences ELLEN W. BLACKWELL, M.S.W., Centers for Medicare and Medicaid Services JOSEPHINE P. BRIGGS, M.D., National Center for Complementary and Alternative Medicine HENRY CLAYPOOL, Office on Disability 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 PRESENT (continued): JUDITH COOPER, Ph.D., National Institute on Deafness and Other Communication Disorders GERALDINE DAWSON, Ph.D., Autism Speaks LEE GROSSMAN, Autism Society ALAN E. GUTTMACHER, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development GAIL R. HOULE, Ph.D., U.S. Department of Education LARKE N. HUANG, Ph.D., Substance Abuse and Mental Health Services Administration YVETTE M. JANVIER, M.D., Children's Specialized Hospital JENNIFER G. JOHNSON, Ed.D., Administration for Children and Families WALTER J. KOROSHETZ, M.D., National Institute Of Neurological Disorders and Stroke CHRISTINE M. McKEE, J.D. ARI NE'EMAN, Autistic Self-Advocacy Network LYN REDWOOD, R.N., M.S.N., Coalition for SafeMinds DENISE D. RESNIK, Southwest Autism Research and Resource Center STEPHEN M. SHORE, Ed.D., Autism Spectrum Consulting ALISON TEPPER SINGER, M.B.A., Autism Science Foundation 3 PRESENT (continued): MARJORIE SOLOMON, Ph.D., M.B.A., University of California, Davis EDWIN TREVATHAN, M.D., M.P.H., Centers for Disease Control and Prevention PETER VAN DYCK, M.D., M.P.H., Health Resources and Services Administration 4 TABLE OF CONTENTS Call to Order and Introductions Dr. Thomas Insel...................... 6 Administrative Comments and Housekeeping Issues......................... 9 Approval of Minutes from the April 30, 2010 Meeting..................... 11 The Cost of Autism Dr. Michael Ganz..................... 13 Update on Center for Children's Environmental Health and Disease Prevention Dr. Isaac Pessah..................... 55 What Causes Autism? Dr. Philip Landrigan................. 84 Public comments Dr. Joseph Nyre ..................... 123 Ms. Caroline Rodgers................ 129 Neurofunctional, structural and cellular abnormalities in 1st years of life Dr. Eric Courchesne................. 137 Opening Doors: A Discussion of Residential Options for Adults with Autism and Related Disorders Ms. Denise Resnik................... 183 Including Students with Autism Spectrum Disorder: Research & Practice Dr. Carol Quirk..................... 223 Committee Business ........................ 259 5 TABLE OF CONTENTS (continued) Discussion of Public Comments ............ 299 Round Robin for IACC Member Updates ...... 312 Adjournment............................... 348 6 PROCEEDINGS (10:03 a.m.) Dr. Insel: Good morning, everyone. Just want to make sure we are good to go in terms of the conference call and videocast before we start. Getting the thumbs-up so let me welcome everybody to the summer meeting of the Interagency Autism Coordinating Committee. The fact that you are here means that you survived this morning's earthquake and yesterday's power outage at Reagan Airport so thanks, all of you, for making it here. Those of you who have come from California must wonder how you can have an earthquake when you get to Washington, D.C., but it happens -- not often, but it does happen. We have got a different kind of meeting today. This is a meeting where most of the day will be taken up with presentations that you have asked for in previous meetings and we thought we would spend a good part of 7 the day just hearing from some of the people who have contributed important information about autism that we thought everybody on the committee should hear and it's also an opportunity for those listening in by conference call or watching by videocast to get updated on some of the new, exciting areas within both autism research and autism services. This isn't comprehensive. There are additional people that we would have loved to have had but we just have run out of time. So we will continue to do this going forward and we will be looking for your recommendations about other people to include. Couple of just administrative announcements and some other announcements that Della will make in a moment. I first wanted to welcome Denise Resnik, who has been here on the phone at previous meetings but not here in person and Denise will be presenting later today, so you 8 will have a chance to hear much more about her background in SARRC but welcome to the meeting. And I also wanted to let you know that we have another new member of the IACC, Sharon Lewis, who is from the Administration on Developmental Disabilities, will be joining us. Jennifer Johnson, who has served in that role in a very effective way, from the Administration for Children and Families, is here today because Sharon could not make the meeting. But in the future we are looking forward to meeting Sharon, as well, and I assume that, Jennifer, you may still be involved with us as times goes on. Good, well, I am glad you could be here today. We also have Josie Briggs, who is representing Dr. Francis Collins today, so welcome, Dr. Briggs. And with that, let me turn this over to Della for some administrative notes. 9 Dr. Hann: Good morning. Just a few sort of housekeeping issues for those of us who are here in the room. First, I wanted to talk about the all-important lunch. We have a very limited time slot actually, for lunch, given the amount on our agenda, and so we have worked out with the hotel and the hotel's restaurant -- you will find at your place, there is an express lunch menu, okay? And I am told by the hotel that if you select one of these items when you go to the restaurant, that it indeed will be express and it will happen quickly. So we highly recommend that as an option for you. Also, for those of you who drove here and are parking, we do have vouchers for you to be able to exit. You will need your little voucher as well as your original card that you got when you came in, the little white, probably white or yellow, little slip of paper. You need both of them. You put the white one in the register first and then you 10 put -- the voucher will be blue -- and then you put the voucher in after that, okay? But you can pick those up at the front desk, at our desk here, at the registration desk. The other thing I just wanted everybody to remember, I think Tom has sort of alluded to it already, the fact that this meeting is live. It is being videocast and it will be archived. In addition to which, it is completely open to the public, which also means it's also open to the press and there may be members of the press who are here in the audience and may wish to speak with you at some points during and throughout the meeting. Then, the other thing I just wanted to remind everyone; the committee decided, I believe as a fact of the last meeting, that the start times now for the full IACC meetings will basically be at 10 o'clock in the morning. That was a decision that was made, and in order to accommodate folks, 11 particularly who live here on the east coast or are flying in in the morning and so forth like that, to be able to be here. So unless something changes and we have a super-packed agenda, the meeting will begin at 10 from now going forward, okay? So those were just some of the light housekeeping items to start the day. Dr. Insel: Okay. Thanks, Della. We are going to start with just quickly looking at the minutes from the April 30th meeting and let me know if you have any corrections, changes, suggestions for those. There have been a number, actually, that have already been submitted, that there are several typos and since these documents go to the Secretary's office, we want to make sure we refer to the Secretary appropriately so we are changing that in the minutes. But let us know if there is anything else that is included there that needs to be changed. Anything? Can I have a 12 motion to approve with those edits that are -- I must say, since we haven't gone through them in detail, the edits that I have seen so far that have come through have been edits around typographical or references to -- Dr. Shore: I make a motion. Dr. Insel: Yes. Okay. Second? In favor? Opposed? We are approved and we are going to move on then, to the first of several, what I think will be really outstanding presentations from -- the first is from Dr. Michael Ganz but I am not sure if Dr. Ganz has arrived yet. Welcome. And we will make sure we can get your slides up on the screen. So while we are bringing the slides up, let me just introduce Dr. Ganz, who is an adjunct assistant professor of society, human development and health at the Harvard School of Public Health.