A Look Into the Federal Response to Rising Rates of Autism
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1 IN 88 CHILDREN: A LOOK INTO THE FEDERAL RESPONSE TO RISING RATES OF AUTISM HEARING BEFORE THE COMMITTEE ON OVERSIGHT AND GOVERNMENT REFORM HOUSE OF REPRESENTATIVES ONE HUNDRED TWELFTH CONGRESS SECOND SESSION NOVEMBER 29, 2012 Serial No. 112–194 Printed for the use of the Committee on Oversight and Government Reform ( Available via the World Wide Web: http://www.fdsys.gov http://www.house.gov/reform U.S. GOVERNMENT PRINTING OFFICE 80–405 PDF WASHINGTON : 2012 For sale by the Superintendent of Documents, U.S. Government Printing Office Internet: bookstore.gpo.gov Phone: toll free (866) 512–1800; DC area (202) 512–1800 Fax: (202) 512–2104 Mail: Stop IDCC, Washington, DC 20402–0001 VerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00001 Fmt 5011 Sfmt 5011 C:\DOCS\80405.TXT APRIL COMMITTEE ON OVERSIGHT AND GOVERNMENT REFORM DARRELL E. ISSA, California, Chairman DAN BURTON, Indiana ELIJAH E. CUMMINGS, Maryland, Ranking JOHN L. MICA, Florida Minority Member TODD RUSSELL PLATTS, Pennsylvania EDOLPHUS TOWNS, New York MICHAEL R. TURNER, Ohio CAROLYN B. MALONEY, New York PATRICK T. MCHENRY, North Carolina ELEANOR HOLMES NORTON, District of JIM JORDAN, Ohio Columbia JASON CHAFFETZ, Utah DENNIS J. KUCINICH, Ohio CONNIE MACK, Florida JOHN F. TIERNEY, Massachusetts TIM WALBERG, Michigan WM. LACY CLAY, Missouri JAMES LANKFORD, Oklahoma STEPHEN F. LYNCH, Massachusetts JUSTIN AMASH, Michigan JIM COOPER, Tennessee ANN MARIE BUERKLE, New York GERALD E. CONNOLLY, Virginia PAUL A. GOSAR, Arizona MIKE QUIGLEY, Illinois RAU´ L R. LABRADOR, Idaho DANNY K. DAVIS, Illinois PATRICK MEEHAN, Pennsylvania BRUCE L. BRALEY, Iowa SCOTT DESJARLAIS, Tennessee PETER WELCH, Vermont JOE WALSH, Illinois JOHN A. YARMUTH, Kentucky TREY GOWDY, South Carolina CHRISTOPHER S. MURPHY, Connecticut DENNIS A. ROSS, Florida JACKIE SPEIER, California BLAKE FARENTHOLD, Texas MIKE KELLY, Pennsylvania VACANCY LAWRENCE J. BRADY, Staff Director JOHN D. CUADERES, Deputy Staff Director ROBERT BORDEN, General Counsel LINDA A. GOOD, Chief Clerk DAVID RAPALLO, Minority Staff Director (II) VerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00002 Fmt 5904 Sfmt 5904 C:\DOCS\80405.TXT APRIL C O N T E N T S Page Hearing held on November 29, 2012 ...................................................................... 1 WITNESSES Dr. Alan Guttmacher, M.D., Director, Eunice Kennedy Shriver National Insti- tute of Child Health and Human Development, National Institutes of Health Oral Statement ................................................................................................. 8 Written Statement ............................................................................................ 11 Ms Coleen Boyle, Ph.D., Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention Oral Statement ................................................................................................. 24 Written Statement ............................................................................................ 26 Mr. Bob Wright, Co-Founder, Autism Speaks Oral Statement ................................................................................................. 62 Written Statement ............................................................................................ 65 Mr. Scott Badesch, President, Autism Society Oral Statement ................................................................................................. 72 Written Statement ............................................................................................ 74 Mr. Mark Blaxill, Board Member, Safeminds Oral Statement ................................................................................................. 77 Written Statement ............................................................................................ 79 Mr. Bradley McGarry, Coordinator of the Asperger Initiative at Mercyhurst University Oral Statement ................................................................................................. 83 Written Statement ............................................................................................ 85 Mr. Michael John Carley, Executive Director, Global & Regional Asperger Syndrome Partnership Oral Statement ................................................................................................. 90 Written Statement ............................................................................................ 93 Mr. Ari Ne’eman, President, Autistic Self Advocacy Network Oral Statement ................................................................................................. 96 Written Statement ............................................................................................ 98 APPENDIX The Honorable Dan Burton, a Member of Congress from the State of Indiana, Opening Statement .............................................................................................. 115 The Honorable Elijah E. Cummings, a Member of Congress from the State of Maryland, Opening Statement ....................................................................... 124 The Honorable Chris Murphy, a Member of Congress from the State of Connecticut, Statement for the Record .............................................................. 126 Mr. Poul Thorsen, M.D., Ph.D., SafeMinds, CDC Researcher—Fugitive from Justice, Background Report ................................................................................ 127 Indiana University, Department of Psychiatry, School of Medicine, Statement for the Record ....................................................................................................... 142 Mr. Brian S. Hooker, Ph.D., Biochemical Engineering, Statement ..................... 150 Mr. Bob Wright’s response to the Questions for the Record ................................ 158 NICHD, Director Guttmacher, Questions for the Record ..................................... 178 HRSA, Response to Questions for the Record ....................................................... 188 Responses to the Honorable Bill Posey, a Member of Congress from the State of Florida ..................................................................................................... 190 Responses to the Honorable Patrick Meehan, a Member of Congress from the State of Pennsylvania .................................................................................... 200 (III) VerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00003 Fmt 5904 Sfmt 5904 C:\DOCS\80405.TXT APRIL VerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00004 Fmt 5904 Sfmt 5904 C:\DOCS\80405.TXT APRIL 1 IN 88 CHILDREN: A LOOK INTO THE FED- ERAL RESPONSE TO RISING RATES OF AU- TISM Thursday, November 29, 2012 HOUSE OF REPRESENTATIVES, COMMITTEE ON OVERSIGHT AND GOVERNMENT REFORM, Washington, D.C. The committee met, pursuant to call, at 2 p.m., in Room 2154, Rayburn House Office Building, Hon. Darrell E. Issa [chairman of the committee] presiding. Present: Representatives Issa, Burton, Gosar, Labrador, Meehan, DesJarlais, Gowdy, Ross, Farenthold, Kelly, Cummings, Maloney, Norton, Kucinich, Tierney, Lynch, Connolly, Quigley, Davis, Yarmuth. Also Present: Representatives Posey, Smith of New Jersey, Bu- chanan, Barrow, Moran and Matheson. Staff Present: Ali Ahmad, Communications Advisor; Alexia Ardolina, Assistant Clerk; Kurt Bardella, Senior Policy Advisor; Robert Borden, General Counsel; Will L. Boyington, Staff Assist- ant; Molly Boyl, Parliamentarian; Lawrence J. Brady, Staff Direc- tor; Ashley H. Callen, Counsel; Sharon Casey, Senior Assistant Clerk; John Cuaderes, Deputy Staff Director; Howard A. Denis, Senior Counsel; Adam P. Fromm, Director of Member Services and Committee Operations; Linda Good, Chief Clerk; Frederick Hill, Di- rector of Communications and Senior Policy Advisor; Christopher Hixon, Deputy Chief Counsel, Oversight; Mark D. Marin, Director of Oversight; Tegan Millspaw, Professional Staff Member; Mary Pritchau, Professional Staff Member; Laura L. Rush, Deputy Chief Clerk; Scott Schmidt, Deputy Director of Digital Strategy and Press Secretary; Cheyenne Steel, Deputy Press Secretary; Rebecca Wat- kins, Deputy Director of Communications; Jeff Wease, Deputy CIO; Jaron Bourke, Minority Director of Administration; Yvette Cravins, Minority Counsel; Ashley Etienne, Minority Director of Commu- nications; Jennifer Hoffman, Minority Press Secretary; Carla Hultberg, Minority Chief Clerk; Elisa LaNier, Minority Deputy Clerk; Suzanne Owen, Minority Health Policy Advisor; and Dave Rapallo, Minority Staff Director. Chairman ISSA. The Committee on Oversight and Government Reform will come to order. This hearing on ‘‘1 in 88 Children: A Look Into the Federal Response to Rising Rates’’ will come to order. The Oversight Committee exists to secure two fundamental prin- ciples: First, Americans have a right to know that the money Washington takes from them is well spent; and, second, Americans (1) VerDate Aug 31 2005 10:03 Apr 19, 2013 Jkt 000000 PO 00000 Frm 00005 Fmt 6633 Sfmt 6633 C:\DOCS\80405.TXT APRIL 2 deserve an efficient, effective government that works for them. Our duty on the Oversight and Government Reform Committee is to protect these rights. Our solemn obligation is to hold government accountable to taxpayers because taxpayers have a right to know what they get from their government. We will work tirelessly in partnership with citizen watchdogs to deliver the facts to the American people and