The Everyday Realities of Living with Autism from a Parent's Perspective
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"I Wouldn't Change Anything": The Everyday Realities of Living with Autism from a Parent's Perspective Item Type text; Electronic Dissertation Authors Molina, Rudy Modesto, Jr. Publisher The University of Arizona. Rights Copyright © is held by the author. Digital access to this material is made possible by the University Libraries, University of Arizona. Further transmission, reproduction or presentation (such as public display or performance) of protected items is prohibited except with permission of the author. Download date 02/10/2021 17:03:55 Link to Item http://hdl.handle.net/10150/337304 “I WOULDN’T CHANGE ANYTHING”: THE EVERYDAY REALITIES OF LIVING WITH AUTISM FROM A PARENT’S PERSPECTIVE by Rudy M. Molina, Jr. ___________________ A Dissertation Submitted to the Faculty of the DEPARTMENT OF TEACHING, LEARNING, AND SOCIO-CULTURAL STUDIES In Partial Fulfillment of the Requirements For the Degree of DOCTOR OF PHILOSOPHY WITH A MAJOR IN LANGUAGE, READING, AND CULTURE In the Graduate College THE UNIVERSITY OF ARIZONA 2014 THE UNIVERSITY OF ARIZONA GRADUATE COLLEGE As members of the Dissertation Committee, we certify that we have read the dissertation prepared by Rudy M. Molina, Jr., titled “I Wouldn’t Change Anything”: The Everyday Realities of Living with Autism from a Parent’s Perspective and recommend that it be accepted as fulfilling the dissertation requirement for the Degree of Doctor of Philosophy. _______________________________________________________________________ Date: 10/7/14 Perry Gilmore _______________________________________________________________________ Date: 10/7/14 Richard Ruiz _______________________________________________________________________ Date: 10/7/14 Todd Fletcher Final approval and acceptance of this dissertation is contingent upon the candidate’s submission of the final copies of the dissertation to the Graduate College. I hereby certify that I have read this dissertation prepared under my direction and recommend that it be accepted as fulfilling the dissertation requirement. ________________________________________________ Date: 10/7/14 Dissertation Director: Perry Gilmore 2 STATEMENT BY AUTHOR This dissertation has been submitted in partial fulfillment of the requirements for an advanced degree at the University of Arizona and is deposited in the University Library to be made available to borrowers under rules of the Library. Brief quotations from this dissertation are allowable without special permission, provided that an accurate acknowledgement of the source is made. Requests for permission for extended quotation from or reproduction of this manuscript in whole or in part may be granted by the head of the major department or the Dean of the Graduate College when in his or her judgment the proposed use of the material is in the interests of scholarship. In all other instances, however, permission must be obtained from the author. SIGNED: Rudy M. Molina, Jr. 3 ACKNOWLEDGEMENTS For my supportive family, loving wife, and beautiful children: Genevieve Herrera Molina Rudy M. Molina, Sr. and Madeline Szklarski Monica Molina Austin and Mayra Gavia Molina Javier Cuahtli Molina Santiago Dxuladi Molina I would like to thank Perry Gilmore, Todd Fletcher, and Richard Ruiz for their guidance, support, and critical perspective. Their knowledge and experience in education but also in life has allowed me to gain even greater respect for their work and each of those faculty members who have invested their heart, soul, and career into improving the lives of children, parents, and families. I will always remember the unconditional support Perry Gilmore provided to me during a time in my academic career when I felt defeated, lost, and unappreciated. She helped me see that I had the potential to complete such an endeavor and that I could contribute to the greater Conversation. To my mother for her unconditional love throughout my life and always believing in me no matter what struggles I faced as a different learner. Her commitment to me and the family will 4 always be respected and cherished. She also instilled the desire to strive for something greater in life and to dream big, bigger than the eyes can see. I would like to thank my father for his simple yet complex approach to life. He instilled in me the value of seeing a project through until the end, especially when the project required great diligence, mental toughness, and sometimes good old fashion hard work. His ability to engineer solutions to problems at work is something I will always admire. Together, my parents provided me the perfect balance between confidence and humility, trust and critique, and excitement and patience for me to navigate life. I hope that I can continue to build off this strong foundation so that my children, and seven generations later, our society will be in a better place. I would like to thank my eldest sister for being there when it was difficult or impossible for others to be there. She has always inspired me to see the positive in life and keep on learning from our life experiences. To Monica, my sister who encouraged me early in life to think critically about what it meant to be Chicano in our U.S. society. Her commitment to her own development, her family and children is refreshing and greatly respected. To my wife, Mayra, my found soul mate who has believed in me since day one and who wishes nothing but the best for me, our family, and our children. May God bless us as a family and I look forward to supporting her as she pursues her dreams so that she experiences the same type of fulfillment that she has allowed for me. My parents and siblings are my foundation and my wife is my future. Together we have filled a beautiful dwelling full of love and support. To my two children, Javier and Santiago, who lay in bed as I think and write. Many years ago I set out to achieve this goal not understanding the requirements of the journey and believed I would do it for personal gains. Although those early thoughts may have been what triggered 5 this journey, but I have since realized that my goal all along has to been to put myself in a position to spend as much time with my family as possible for the remainder of my life. I look forward to spending hours, days, and years doing the things we enjoy most. Thank you to all of those cheered me on along the way. Thank you for caring when you knew no other way to support me on my journey. Thank you for supporting me even when it meant there would be sacrifices. 6 TABLE OF CONTENTS LIST OF TABLES AND DIAGRAMS .......................................................................................... 8 ABSTRACT .................................................................................................................................... 9 I – INTRODUCTION ................................................................................................................... 10 Purpose of the Study ................................................................................................................. 13 II – REVIEW OF THE LITERATURE ........................................................................................ 16 History of Autism ..................................................................................................................... 16 Parents of Children Diagnosed with Autism ............................................................................ 32 III – METHODOLOGY ............................................................................................................... 38 Paradigmatic Orientation .......................................................................................................... 38 The Participants ........................................................................................................................ 39 Child with Autism ..................................................................................................................... 47 Data Collection Strategies......................................................................................................... 50 Data Analysis Strategies ........................................................................................................... 57 IV – DATA ANALYSIS: “I Wouldn’t Change Anything…” ...................................................... 69 Cluster 1 – Managing the Diagnosis Process ............................................................................ 74 Cluster 2 – Child’s Behavioral and Educational Needs ............................................................ 89 Cluster 3 – Impact on Parents’ Well-being, Work, and Lives ................................................ 110 Cluster 4 – Impact on Family as a Whole ............................................................................... 122 Cluster 5 – Full Integration into Society ................................................................................. 136 V – CONCLUSION AND IMPLICATIONS ............................................................................. 153 APPENDIX A: Interview Protocol ............................................................................................. 162 APPENDIX B: Disclosure Letter ............................................................................................... 164 REFERENCES ........................................................................................................................... 166 7 LIST OF TABLES AND DIAGRAMS 2.1. Key Distinguishing Features Between Early Autism