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I Will Tell You About Playing with My Brother, but Not About His Autism"

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I Will Tell You About Playing with My Brother, but Not About His Autism "I will tell you about playing with my brother, but not about his autism": Perceptions of social interaction from the voice of child who has a sibling identified with Autism Spectrum Disorder by Amy M. Papacek A Dissertation Presented in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy Approved August 2012 by the Graduate Supervisory Committee: Elizabeth Kozleski, Chair Joseph Tobin Elizabeth Swadener ARIZONA STATE UNIVERSITY December 2012 ABSTRACT Autism Spectrum Disorder (ASD) is experienced in a variety of ways within families particularly among siblings with and without ASD. The effects of ASD on sibling relationships are integral to family life. While some studies have examined sibling relationships, research regarding sibling roles exhibited during play activities and social interactions is lacking. Further, siblings' voices are rarely revealed in research on play. In response to a need for greater understanding of the role of play among siblings impacted by ASD, this dissertation used a cultural historical activity theory lens to understand how play and social interactions evolved among siblings since childhood development is informed by access to and participation in play. Siblings may be considered actors with unique cultural histories as they create and re- create their own identities through play. In this study, an emphasis was placed on the complex processes siblings experience while locating their own niche with their families. The study focused on the use of a variety of tools, division of labor, the rules families utilized to interact and how these rules were disturbed. As a result, the study offers a more complete understanding of how play and social interactions affect the ways ASD impact siblings, families, and community members. This study provides holistic views of the development and impact of sibling play on identity development and relationships. i DEDICATION To my beloved family who has always believed in me more than I believed in myself. To my dear husband, Patrick, thank you for your continuous love, and your steadfast patience and encouragement. To my wonderful children: Drew, Kelsey, Katie and Matt - your intelligence, humor, thoughtfulness, and unending love have been invaluable in my life and happiness. To my mother, Susan, thank you for being you and allowing me to be me. You have helped to make me who I am. ii ACKNOWLEDGMENTS The completion of this dissertation was made possible only through the constant support of several people. Their support has not only allowed me to complete this dissertation but has been present through my graduate career. To Dr. Elizabeth Kozleski, my dissertation chair and mentor, her unyielding guidance has provided me with the foundation necessary to complete my Ph.D. and begin my career. She has served not only as my academic advisor but also as a role model of integrity, humility, and generosity. Her thoughtful insights and careful feedback at every step of my dissertation process enabled me to conceptualize and complete this study with balance and enthusiasm. She pushed me to think about the relevance of this work, and to find a scholarly voice in the process. I am deeply grateful for her generous advice, our meetings, emails, and conversations that led me to complete this degree. I deeply appreciate Dr. Beth Swadener for her academically amazing insights and support. She has provided me with insurmountable amount of inspiration and guidance during my journey. I will always be grateful for her genuine interest in my topic, knowledge, and resources provided throughout. Additionally, Dr. Swadener has provided me with a solid foundation regarding children’s rights, diversity, equality, and the importance of listening to the voices of those who are frequently marginalized. To Dr. Joseph Tobin for his gentle, quiet inspiration and advice through the development of this project. I greatly appreciate his time and feedback. I am also thankful for his thought-provoking and stimulating classes and the valuable lessons in ‘community’. I look forward to bringing this practice forth to my students. iii I truly appreciate the member of my committee for your rigorous expectations, compassionate criticisms, and somehow managing to make nerve- wracking events like comprehensive exams and prospectus defense seem like just a few more inspiring conversations. The introduction to useful resources and guidance to crucial theoretical resources has helped me clarify my thoughts and make sense of a great deal of unfamiliar literature preparing me for design implications of my work. In addition, most importantly to committee, thank you for helping me learn how to learn. This study could not have been possible without the participation, insight, and trust of the six families who shared their personal experiences, hopes, dreams, and concerns with me. My deepest gratitude goes to Christy, Carson, Amana, Ainsley, Emma, and Kadee, whom I had the fortune of spending time with during this project. I am also grateful to the parents of these children, who kindly opened the doors of their homes and allowed me to spend learning about their family’s experience with Autism Spectrum Disorder. During my doctoral program, I had the privilege to work with and learn from several supportive faculty members. I am grateful to Dr. Alfredo Artiles for his leadership and guidance. He pushed my thinking about interdisciplinary work, inclusive education, collaboration, and methods. My experience in our sociocultural research group has been invaluable in my formation as a scholar. I am grateful for the support provided by Drs. Josephine Marsh and Thomas Barone. Their support provided me with the strength I needed to shape and create a positive community during a time in my program of uncertainty in the unknown path of graduate school. iv I am grateful for the opportunity to have worked closely with Dr. Marsh establishing a graduate student chapter of Kappa Delta Pi at ASU. I struggle to find the words to adequately thank my family for their support. I am eternally grateful to my family for absolutely everything. My mother, Susan, who helped me and pushed me through school, generously organizing holiday events, cooking meals at just the right moment, morning phone calls, “checking” my wardrobe, and giving me a sense of purpose and self-discipline for achieving my goals. To my children, Drew, Kelsey, Katie, and Matt through laughter and love as well as an inspiration to make the world a better place - gave me the strength to reach my goal. They have put up with a dissertating parent with astonishing resilience, patience, and sensitivity even when my laptop was attached to my being and I was too distracted to show my gratitude for your presence in my everyday life. My successes are a direct result of their love and support. To my husband Patrick, for letting me fall apart and then helping to put me back together. For believing in me and in my work even when I had doubts, for encouraging me to push through my stress while urging I take a break at the appropriate times. I cannot sum-up all of the little things you have done to make this dissertation possible, such as: grading tests and quizzes, reading and commenting on draft sections (even when I ignored these), sorting papers, assisting me create teaching activities, and listening to me whine insistently. I am immensely grateful for all of these things and more. I am so lucky to share this experience with my fellow graduate students. I would like to acknowledge the friendships that made this dissertation possible. To Rebecca Neal and Lacey Peters, who grounded me with honesty and helped me v become the researcher I am today. Thank you for your kind words of encouragement when I needed them most, and for your generous feedback in my writing process. Our conversations about theory, frameworks, ‘community of practice’, students including The Girls, people watching at Solo, and life were instrumental for me to get to this point. To Amber Johnston for non-judgmental attitudes and support that has promoted both my professional and personal development. I am extremely grateful to my friends in our writing support group: Yi-Ren, Kim, Becki, Sher, Sarah, Wen-Ting. Your generous help with editing, feedback for my writing and reminding me of my potential. I cannot imagine how lonely is must be to do work like this in a place where one’s fellow graduate students are competitors instead of collaborators and colleagues. You are all wonderful beyond words. Finally, to all that have contributed even the smallest detail and support over the last few years – thank you with all my heart! vi TABLE OF CONTENTS Page LIST OF TABLES ................................................................................................................... xiii LIST OF FIGURES ................................................................................................................. xiv PREFACE ................................................................................................................................... xv CHAPTER 1 INTRODUCTION ............................................................................................................. 1 Background of Autism Spectrum Disorder .............................................................. 5 Diagnostic Criteria ............................................................................................. 6 Impact of ASD on Individuals with ASD Label ......................................... 7
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