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Meeting Transcript 1 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES INTERAGENCY AUTISM COORDINATING COMMITTEE FULL COMMITTEE MEETING FRIDAY, NOVEMBER 17, 2006 The Interagency Autism Coordinating Committee (IACC) convened in Bethesda, Maryland, at the National Institutes of Health (NIH), 31 Center Drive, Building 31, Room 6C10, Thomas Insel, M.D., Chair, presiding. PARTICIPANTS: THOMAS INSEL, M.D., Chair, IACC, National Institute of Mental Health (NIMH) ANN WAGNER, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), (NIMH) DAVID AMARAL, Ph.D., University of California, Davis JAMES BATTEY, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD) ELLEN BLACKWELL, M.S.W. , Centers for Medicare and Medicaid Services (CMS) LAURA BONO, National Autism Association (NAA) COLEEN BOYLE, Ph.D., Centers for Disease Control and Prevention (CDC) JEFF BRADSTREET, M.D., International Child Development Resource Center MARK CORRALES, M.P.P., U.S. Environmental Protection Agency (EPA) KATHERINE LYON DANIEL, Ph.D., Centers for Disease Control and Prevention (CDC) 2 PARTICIPANTS (continued): WENDY FOURNIER, National Autism Association (NAA) ANN GIBBONS, Autism Speaks BARRY GORDON, M.D., Ph.D., Johns Hopkins University LEE GROSSMAN, Autism Society of America (ASA) GAIL HOULE, Ph.D., U.S. Department of Education (ED) LARKE HUANG, Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA) CHRIS JOHNSON, M.D., M.Ed., University of Texas Health Science Center at San Antonio ALICE KAU, Ph.D., National Institute of Child Health and Human Development (NICHD) CLARA LAJONCHERE, Ph.D., Cure Autism Now (CAN) STORY LANDIS, Ph.D., National Institute of Neurological Disorders and Stroke (NINDS) CINDY LAWLER, Ph.D., National Institute of Environmental Health Sciences (NIEHS) ELIZABETH LOPEZ, Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA) KATHERINE LOVELAND, Ph.D., University of Texas Health Science Center at Houston YVONNE MADDOX, Ph.D., National Institute of Child Health and Human Development (NICHD) MATTHEW MCAULIFFE, Ph.D., National Database for Autism Research (NDAR) MERLE MCPHERSON, Ph.D., Health Resources and Services Administration (HRSA) PATRICIA MORRISSEY, Ph.D., Administration for Children and Families (ACF) 3 PARTICIPANTS (continued): NESS [INSERT FIRST NAME], [INSERT DEGREE(S), INSERT AFFILIATION(S)] PAZIN [INSERT FIRST NAME, DEGREE(S), AND AFFILIATION(S)] AUDREY PENN, M.D., National Institute of Neurological Disorders and Stroke (NINDS) WILLIAM RAUB, Ph.D., Office of the Secretary, U.S. Department of Health and Human Services DENISE RESNIK, Southwest Autism Research and Resource Center (SARRC) CELIA ROSENQUIST, Ph.D., U.S. Department of Education (ED) DAVID SCHWARTZ, Ph.D., National Institute of Environmental Health Sciences (NIEHS) JON SHESTACK, Cure Autism Now (CAN) BONNIE STRICKLAND, Ph.D., Health Resources and Services Administration (HRSA) SUE SWEDO, M.D., National Institute of Mental Health (NIMH) MARINA VOLKOV, Ph.D., National Institute of Mental Health (NIMH) JOHN WHITE, National Database for Autism Research (NDAR) LUCILLE ZEPH, Ed.D., University of Maine DAVID ZIELINSKI, Ph.D., National Institute of Mental Health (NIMH) 4 TABLE OF CONTENTS Opening Remarks ................................... 5 Updates on Federal Activities .................... 38 Discussion ...................................... 108 Adjournment ..................................... 288 5 PROCEEDINGS: Dr. Thomas Insel: I know there will be some people still drifting in, but we've got a full agenda, and I don't want to fall too far behind at the outset. I'm Tom Insel, the Chair of the Interagency Autism Coordinating Committee, and pleased to welcome all the members of the Committee and many of those around the room who will be in attendance today. This is an interesting meeting. We'll have a variety of presentations this morning, both on science and services. You'll be hearing really the full spectrum from a presentation on service guidelines on the one extreme to presentation on a stereological analysis of amygdala in autism on the other. So I think we have a lot to look forward to. Another very important item on our agenda today will be to go through the evaluation of the matrix, which took place over the last couple of months, and we'll put aside some time this afternoon to have a discussion with the Committee to hear more about this and to make sure we get 6 your input before we move to the next step. So that's the agenda for the day. I think without taking any more time, we'll come back and do a round of introductions in just a few minutes, but let me introduce Chris Plauche Johnson, who is with us from The University of Texas Health Science Center at San Antonio. Dr. Johnson is the Medical Director of the Village of Hope Center for Children with Disabilities. It's a clinic that provides interdisciplinary evaluations of children with developmental delays, autism and learning deficits. She's served on the American Academy of Pediatrics’ National Committee on Children with Disabilities since 1997, and she's worked with AAP leadership to publish a brochure regarding the early signs of autism. She was asked to represent the AAP on the Services Subcommittee of the IACC, and that's actually the capacity in which she comes to us today. She's somebody who has worked very well with the Subcommittee, and as you know from the last couple of meetings, we've been trying to get many 7 of the items on the Subcommittee's agenda to be center stage here for the full Committee. And we've asked Chris to do this presentation. Originally, it was going to be later in the day, but because of a scheduling conflict, had to move her to the very beginning of the day. So, Chris, we're going to have you lead off the meeting before we do all the round robin of the table, and you'll sort of set the stage for us, hopefully. Welcome. Dr. Chris Johnson: Thank you so much for allowing me to be here. I am simply representing our workgroup. It's been a work in progress for about a year and a half. There are about a dozen in our merry band, mostly representing developmental pediatricians, some general pediatricians, psychologists, school systems, parents, and parent advocates. We've had a couple of wonderful facilitators. I know Beth is here today, and also Christine who is unable to be here. Our intent or the task that was provided to us was to do three things: Number one, to develop 8 guidelines for the medical home/primary-care practice in pediatrics; to develop some actions, determine or identify, I guess, actions needed from other institutes to help the primary- care/medical home pediatrician in carrying out these guidelines, and then look at how these can best be implemented. And it just so happened that the AAP had embarked just a few months in advance of this project in revising their guidelines that were published in 2001, so this project dovetailed onto the AAP's efforts to update the guidelines for pediatricians. Those guidelines, I'm happy to say, before I came on the plane here, were just submitted to the copy editor, and they have been through four of the five levels of review from the Committee on Children with Disabilities, the American Academy of Pediatrics Autism Expert Panel; then all of the committees within the Academy that have anything to do with children with autism, school committees, community pediatrics, all of these different ones; then the last tier of review were outside reviewers. This 9 is where the Catherine Lords, Fred Volkmars, Amy Weatherbys from various other institutes outside of the pediatrics had a chance to review. So all of those comments and recommendations have been incorporated, and this has formed and become the guideline for the medical home/primary- care that we are about to present. Now I believe that you have the entire handout. I think this is in everybody's packet or is available to people. This is our document. It is quite lengthy. There's no way to cover all of these recommendations in 15 or 20 minutes, but I kind of wanted to orient you to your handout. This first column is actually the recommendations that are being made by all of these institutes, the American Academy of Pediatrics, and our workgroup. They are in agreement with each other from the different organizations. In fact, many of the people developing these guidelines actually overlap on these committees. As I said, these are close to being published within the next 5 or 6 months, hopefully. They still have one tier of review, and 10 that's the board, the board of directors for the AAP, and things could change. So that's why I'm saying this is a work in progress as far as the AAP guidelines. The most important section is this middle section. This middle section is the actions that are needed by other entities in order to facilitate implementation of the autism guidelines in the primary-care/medical home practice. And the final list is somewhat incomplete compared to these two -- various resources, references, other guidelines. There are five goals covered by these guidelines: One, general principles of medical home for the primary-care practice, and in particular, all of this relates to autism spectrum disorders. The second one is screening, surveillance screen, and the definitive diagnosis of autism spectrum disorders; the ongoing medical care after diagnosis looking at all of these -- medical, behavioral, mental health care, and complementary and alternative medicine. The fourth one is community services and coordination of 11 care, and the last one, transition. Because of the time crunch, we decided that this would be the most important one to highlight, because it is the most radical -- the recommendations contained in this goal are the most radically different from the original guidelines of the AAP.
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