THE AUTISM SPECTRUM DISORDERS / VACCINE LINK DEBATE: A HEALTH SOCIAL MOVEMENT by Margaret Anna Kerr B.A. Hollins University 2002 M.A. University of Pittsburgh 2004 Submitted to the Graduate Faculty of the College of Arts and Science in partial fulfillment of the requirements for the degree of Doctor of Philosophy University of Pittsburgh 2009 UNIVERSITY OF PITTSBURGH School of Arts and Sciences This dissertation was presented by Margaret Anna Kerr It was defended on May 6th, 2009 and approved by Dr. Phyllis Coontz, Associate Professor of Sociology, University of Pittsburgh Dr. John Markoff, University Professor of Sociology, University of Pittsburgh Dr. Keri Rodriguez, Assistant Professor of Sociology, University of Pittsburgh Dr. Matthew Schneirov, Associate Professor of Sociology, Duquesne University Dr. John Marx Professor of Sociology, University of Pittsburgh ii Copyright © by Margaret Anna Kerr, PhD 2009 iii Autism and Vaccines: A Health Social Movement Margaret Anna Kerr, Ph.D. University of Pittsburgh, 2009 ABSTRACT Over the past ten years, the parents and loved ones of thousands of individuals afflicted with Autism Spectrum Disorders (ASD) have mobilized around the idea that vaccines play a causative role in ASDs. The US Federal government and Western mainstream medicine refute this, claiming evidence refutes any causal link between vaccines and ASD. The result has been a heated dispute between ASD/vaccine link (ASD/VL) activists and mainstream medicine, both claiming legitimacy based on their own scientific research. To examine this controversy and why ASD/VL activists continue to mobilize around a scientific hypothesis that has been largely disproved, I surveyed and conducted in-depth interviews with ASD/VL activists and examined artifacts from the movement. Utilizing the theoretical framework on Health Social Movements (HSM) developed by Phil Brown and theories on boundary work developed by Thomas Gieryn I examined how and why ASD/VL activists, in collaboration with politicians and scientists, organized a movement to prove there is significant evidence showing a causative link between vaccines and ASDs. I explored how mobilization occurred around several key events including the US Congressional hearings on vaccine safety, the Immunization Safety Review Committee hearings, reports published by the Institute of Medicine, and the release of the Simpsonwood Retreat transcript. I found that while ASD/VL activists became lay experts and used scientific evidence to build their iv argument, they depended on their own experiential knowledge to inform their personal beliefs on ASD causation and treatment. My findings have significant impact for the study of health social movements and the study of contested illnesses. v TABLE OF CONTENTS ABSTRACT ................................................................................................................................. IV PREFACE .................................................................................................................................. XII 1.0 INTRODUCTION ........................................................................................................ 1 1.1 THEORETICAL FOUNDATIONS ................................................................... 4 1.1.1 The Production of Cultural Authority ........................................................ 4 1.1.2 Boundary Work ............................................................................................ 7 1.1.3 Health Social Movements ........................................................................... 11 1.2 METHODOLOGY ............................................................................................ 19 1.2.1 Internet as a Site of Movement Mobilization and Action ....................... 20 1.2.2 Dataset 1: Survey Data ............................................................................... 22 1.2.2.1 Gaining Access .................................................................................... 23 1.2.2.2 The Survey ........................................................................................... 24 1.2.3 Data Set 2: In-depth Interviews ................................................................. 25 1.2.4 Data Set 3: Artifacts .................................................................................... 26 1.2.5 Analysis ........................................................................................................ 27 1.2.5.1 Reliability ............................................................................................. 30 2.0 THE MOVEMENT BEGINS .................................................................................... 32 2.1 AUTISM AND VACCINES: MAKING THE CONNECTION .................... 36 2.2 THE MAKINGS OF A MOVEMENT ............................................................ 40 2.2.1 Demographic Data ...................................................................................... 41 vi 2.2.1.1 Survey .................................................................................................. 41 2.2.1.2 In-depth Interviews ............................................................................ 45 2.3 MOVEMENT GROUP PROFILES: EARLY BIRDS ................................... 46 2.3.1 National Vaccine Information Center and Barbara Lo Fisher .............. 48 2.3.2 Defeat Autism Now ..................................................................................... 51 2.3.3 National Autism Association ...................................................................... 52 2.3.4 Unlocking Autism........................................................................................ 55 2.3.5 SafeMinds .................................................................................................... 57 3.0 MOVING TO THE FRONT LINES ........................................................................ 63 3.1 BURTON’S HEARINGS ON VACCINE SAFTEY ....................................... 63 3.2 THE INSTITUTE OF MEDICINE .................................................................. 66 3.3 SIMPSONWOOD .............................................................................................. 69 3.3.1 Presenting the Case ..................................................................................... 71 3.3.2 Where Do We Go From Here? .................................................................. 75 3.3.3 Robert F. Kennedy, Jr. ............................................................................... 83 4.0 CONTESTS IN SCIENCE ........................................................................................ 88 4.1 GAINING ACCESS ........................................................................................... 88 4.2 DATA WARS ..................................................................................................... 96 4.3 THE SCIENTIFIC SHOWDOWN AT THE IOM ....................................... 101 5.0 RESURGENCE OF MOBILIZATION ................................................................. 110 5.1 THE NEXT GENERATION .......................................................................... 110 5.1.1 Generation Rescue and Jenny McCarthy ............................................... 110 5.1.2 NoMercury.org .......................................................................................... 119 vii 5.1.3 Advocates for Children's Health Affected by Mercury Poisoning and Autism Action Collation .......................................................................................... 121 5.1.4 Moms Against Mercury ............................................................................ 123 5.2 DAMAGE CONTROL .................................................................................... 130 5.2.1 Boundary work: Expulsion from the Ranks .......................................... 131 5.2.2 Framing tactics .......................................................................................... 136 5.2.3 Movement/Countermovement Dynamics ............................................... 138 6.0 IN THEIR OWN WORDS ...................................................................................... 141 6.1 DON’T CALL ME ANTI-SCIENCE ............................................................. 142 6.2 TRUST IN INSTITUTIONS ........................................................................... 143 6.3 DETERMINING CREDIBILITY .................................................................. 151 6.4 ACTIVISM WITHOUT ACTIVISTS ........................................................... 157 6.4.1 Don’t call me an activist ........................................................................... 157 6.4.2 Getting the Word Out ............................................................................... 163 7.0 THE ROLE AND INFLUENCE OF MEDICAL PROVIDERS ......................... 167 7.1 GOODBYE TO THE GOLDEN AGE ........................................................... 168 7.2 ATTITUDES TOWARDS MEDICAL PROVIDERS .................................. 169 8.0 THE MAKING OF POLITICIZED COLLECTIVE ILLNESS IDENTITY .... 179 8.1 SHARED IDENTITY: YOU FEEL THE SAME WAY? ............................ 179 8.1.1 Stress on Relationships ............................................................................. 180 8.1.2 Self Blame .................................................................................................. 185 8.2 COMING TOGETHER IN POLITICAL ACTION .................................... 187 9.0 HEALTH