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A Historical Analysis of the Pioneers and Advocates of Autism Loyola University Chicago Loyola eCommons Dissertations Theses and Dissertations 2015 A Historical Analysis of the Pioneers and Advocates of Autism Spectrum Disorder (1980-2013): Examining the Evolution of the Diagnosis and the Influences That Have Shaped What the Diagnosis Is Today Cynthia Marie Sikora Loyola University Chicago Recommended Citation Sikora, Cynthia Marie, "A Historical Analysis of the Pioneers and Advocates of Autism Spectrum Disorder (1980-2013): Examining the Evolution of the Diagnosis and the Influences That Have Shaped What the Diagnosis Is Today" (2015). Dissertations. Paper 1305. http://ecommons.luc.edu/luc_diss/1305 This Dissertation is brought to you for free and open access by the Theses and Dissertations at Loyola eCommons. It has been accepted for inclusion in Dissertations by an authorized administrator of Loyola eCommons. For more information, please contact [email protected]. This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License. Copyright © 2015 Cynthia Marie Sikora LOYOLA UNIVERSITY CHICAGO A HISTORICAL ANALYSIS OF THE PIONEERS AND ADVOCATES OF AUTISM SPECTRUM DISORDER (1980-2013): EXAMINING THE EVOLUTION OF THE DIAGNOSIS AND THE INFLUENCES THAT HAVE SHAPED WHAT THE DIAGNOSIS IS TODAY A DISSERTATION SUBMITTED TO THE FACULTY OF THE GRADUATE SCHOOL OF EDUCATION IN CANDIDACY FOR THE DEGREE OF DOCTOR OF EDUCATION PROGRAM IN ADMINISTRATION AND SUPERVISION BY CYNTHIA SIKORA CHICAGO, ILLINOIS MAY 2015 Copyright by Cynthia Sikora, 2015 All rights reserved. ACKNOWLEDGEMENTS I would like to thank Dr. Janis Fine who served as my adviser and mentor throughout the dissertation process. Dr. Fine gave helpful insight and provided feedback and a valuable learning experience. I would also like to thank my readers, Dr. Marla Israel and Dr. James Upchurch, who supplied important perspectives of professional educators. Thank you to my father Dr. Raymond Reiplinger, who served as my unofficial reader and provided me with constant encouragement and support throughout the entire process. I also thank my father for modeling a strong work ethic and providing me with an opportunity to succeed in all that I set my mind to. Without his unwavering support I would never be where I am today, both professionally and personally. I would also like to thank my mother Barbara Reiplinger, for giving me the tools to understand how to balance motherhood and work because that was beyond necessary in order to achieve this goal. Thank you to my husband Dr. Brad Sikora, who has been a set of ears to listen and a voice of reason when I have needed it most. I appreciate all you have done for me and it has been invaluable. Thank you to my children Raymond, Reid and Sophia for understanding and being so patient when I could not give you my full attention or spend as much time with you as my heart desired. Thank you to the rest of my family and friends for their acceptance and understanding of my absence over the last years. I truly appreciate you standing by me iii and being willing sounding boards and beacons of encouragement throughout this entire process. iv DEDICATION I dedicate this dissertation to my parents, my husband and my children. You have all been a part of making me who I am today and without your love and support I would be nothing. I love you and I am beyond blessed to have you with me to share in this journey. TABLE OF CONTENTS ACKNOWLEDGEMENTS ............................................................................................... iii LIST OF TABLES ........................................................................................................... viii ABSTRACT ....................................................................................................................... ix CHAPTER I. INTRODUCTION ........................................................................................................ 1 Purpose of the Study ............................................................................................... 1 Significance of the Study ........................................................................................ 3 Research Questions ................................................................................................. 5 Methodology ........................................................................................................... 6 Limitations to the Study .......................................................................................... 9 Bias of Researcher ...................................................................................... 9 Definition of Terms............................................................................................... 10 Overview of Chapters ........................................................................................... 15 II. BACKGROUND ........................................................................................................ 23 Introduction ........................................................................................................... 23 Background of Special Education in the 18th Century .......................................... 24 Background of Special Education in the 19th Century .......................................... 25 Background of Special Education in the 20th Century .......................................... 28 Background of Autism Spectrum Disorder in the 20th Century ............................ 30 III. PIONEERS AND ADVOCATES FOR THE MEDICAL FIELD FOR AUTISM SPECTRUM DISORDER .......................................................................................... 43 Chapter Description .............................................................................................. 43 Pioneers/Medical Field ......................................................................................... 44 Leo Kanner................................................................................................ 44 Hans Asperger ........................................................................................... 47 Lorna Wing ............................................................................................... 49 Margaret Bauman...................................................................................... 52 Diagnostic and Statistical Manual III-5 ................................................................ 53 Andrew Wakefield and Vaccinations ................................................................... 58 Growth in Research Regarding Causation and Markers ....................................... 61 What Does This Mean For Schools? .................................................................... 63 IV. PIONEERS AND ADVOCATES FOR ASSESSMENTS FOR AUTISM SPECTRUM DISORDER .......................................................................................... 65 Chapter Description .............................................................................................. 65 Pioneers/Assessments ........................................................................................... 66 Simon Baron-Cohen/CHAT...................................................................... 66 vi Lorna Wing and Judith Gould/DISCO ..................................................... 69 Eric Schopler and Robert Reichler/CARS ................................................ 73 What Does This Mean for Schools? .................................................................... 75 V. PIONEERS AND ADVOCATES FOR THERAPIES AND EDUCATIONAL TREATMENTS FOR AUTISM SPECTRUM DISORDER ...................................... 80 Chapter Description .............................................................................................. 80 Pioneers/Therapies and Educational Treatments .................................................. 81 Ole Ivar Lovaas/The Lovaas Method ....................................................... 81 Eric Schopler/Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) Autism Program .... 85 Carol Gray/Social Stories ......................................................................... 87 Michelle Garcia-Winner/Social Thinking................................................. 90 Kalle Reichelt/Gluten and Caseinn Free Diet ........................................... 96 What Does This Mean for Schools? ..................................................................... 98 VI. PIONEERS AND ADVOCATES FOR INCREASING THE REGULATIONS, RIGHTS, FUNDING AND SOCIETAL ACCEPTANCE FOR AUTISM SPECTRUM DISORDER ........................................................................................ 102 Chapter Description ............................................................................................ 102 Pioneers of Regulations ...................................................................................... 102 Pioneers of Rights ............................................................................................... 111 Pioneers of Funding ............................................................................................ 115 Pioneers of Societal Acceptance/Celebrity Influence ......................................... 117 What Does This Means for Schools? .................................................................. 124 VII. CONCLUSIONS AND SUMMARY ....................................................................... 126 Research Questions ............................................................................................
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