EXPLORING THE LIVED EXPERIENCES OF SIBLINGS WHO GROW UP WITH A SIBLING DIAGNOSED WITH AUTISM SPECTRUM DISORDER A Research Practicum Submitted to the Faculty of Social Work In Partial Fulfilment of the Requirements For the Degree of Master of Social Work University of Regina by Amanda Day Saskatoon, Saskatchewan July, 2016 © 2016: Amanda Day ABSTRACT This research project explores the lived experiences of young adults who are living with a sibling diagnosed with Autism Spectrum Disorder (ASD) by asking one methodological question: What are the lived experiences of young adults who lived with a sibling diagnosed with ASD in Saskatchewan? The research practicum employs a phenomenological approach, which includes semi-structured interviews and participant derived photographs, involving 5 adult siblings in Saskatchewan. A different relationship, but it is not one that is less became the essence shared within the different lived experiences of the study participants. The essence was impacted by two major themes identified throughout the analysis, including challenging and positive experiences. Subthemes that emerged from the challenging theme include the diagnosis and complex and layered. Positive experiences subthemes include reciprocity and bonding. These themes are discussed, along with the implications for social workers and future research. i ACKNOWLEDGEMENTS Time is one of the most precious gifts we receive, and each year time seems to move more quickly. As this journey comes to a close, I want to thank everyone who took the time to make sure I reached my finish line. The time I spent studying sibling relationships and Autism Spectrum Disorder has been challenging, rewarding, and has fulfilled my life in ways I cannot describe. I am so thankful for the time participants took to share their stories. Your stories provided great insight into the value of sibling relationships. Your interviews were full of emotion, strength, and encouragement to seek out and connect with your sibling. I was moved by each story, and have great admiration for each participant. My research project committee has also provided me a great deal of time. I am thankful to my supervisor, Dr. Randy Johner for her continued patience and thought- provoking questions. I am also thankful for the time Dr. Darlene Chalmers and Dr. Nuelle Novik spent reading and re-reading my work. I am also thankful for my mom, dad, and mother-in-law's love and support. This project would not have been possible without your listening ears, or your words of encouragement. A deep thank you to my sister: thank you for helping me reflect on this journey. Sisterhood is an unbreakable bond and I cannot imagine my life without you. Thank you to my husband, who has provided me endless support and love. There were days where I wanted to quit, but you continued to cheer me on, and push me towards the finish line; I would not have finished were you not my number one cheerleader. Lastly, to my son: you inspire me to do great things in life. I hope that one day you too can understand the wonder and joy of a sibling relationship ii TABLE OF CONTENTS Abstract ....................................................................................................................................... i Acknowledgements .................................................................................................................... ii Table of Contents ...................................................................................................................... iii List of Tables and Figures ........................................................................................................ vii Glossary .................................................................................................................................. viii CHAPTER ONE: Introduction .................................................................................................. 1 1.1 Personal Reflexivity .............................................................................................................. 1 1.2 Problem ................................................................................................................................. 2 1.3 Purpose of the Research Project ............................................................................................ 3 CHAPTER TWO: Literature Review ......................................................................................... 4 2.1 Introduction ........................................................................................................................... 4 2.2 Meaning of a Sibling Relationship ........................................................................................ 5 2.3 History of Sibling Literature ................................................................................................. 7 2.4 Current Sibling Literature ..................................................................................................... 8 2.5 Gaps in Sibling Literature ..................................................................................................... 9 2.6 Positive Experiences ........................................................................................................... 11 2.6.1 Sources of Comfort and Support ............................................................................. 11 2.6.2 Companionship and Friendship .............................................................................. 12 2.6.3 Sibling Warmth and Attachment ............................................................................. 13 2.7 Negative Experiences .......................................................................................................... 15 2.7.1 Responsibility and Blame ....................................................................................... 15 2.7.2 Stress and Conflict .................................................................................................. 16 2.8 The Diagnosis of Autism Spectrum Disorder and the Sibling Relationship ....................... 17 2.9 Siblings and Autism Spectrum Disorder ............................................................................. 20 2.10 Current Literature on Autism Spectrum Disorder ............................................................. 20 2.11 Gaps in Sibling Literature ................................................................................................. 21 2.12 Positive Experiences ......................................................................................................... 24 2.12.1 Helpful and Caring ................................................................................................ 24 2.12.2 Closeness ............................................................................................................... 25 2.12.3 Positive Attitude .................................................................................................... 25 2.13 Negative Experiences ........................................................................................................ 26 2.13.1 Worry, Guilt and Responsibility ........................................................................... 27 2.13.2 Anger ..................................................................................................................... 28 2.13.3 Depression and Stress ........................................................................................... 29 2.14 Conclusion ........................................................................................................................ 30 iii CHAPTER THREE: Research Design .................................................................................... 32 3.1 Theoretical Framework ....................................................................................................... 32 3.1.1 Introduction ............................................................................................................. 32 3.1.2 Family-Ecological Systems Theory ........................................................................ 32 3.1.3 Systems Structures in Bronfenbrenner's Theory ..................................................... 33 3.1.4 Microsystem ............................................................................................................ 33 3.1.5 Mesosystem ............................................................................................................. 34 3.1.6 Exosystem ............................................................................................................... 34 3.1.7 Macrosystem ........................................................................................................... 34 3.1.8 Chronosystem ......................................................................................................... 35 3.1.9 Relevance of Family-Ecological Systems Theory .................................................. 35 3.2 Methodology ....................................................................................................................... 36 3.2.1 What is Phenomenology? ....................................................................................... 37 3.2.2 Max van Manen's Hermeneutic Phenomenology ................................................... 39 3.3 Sampling and Recruitment Strategies ................................................................................. 40 3.3.1 Sampling Strategies .............................................................................................. 41 3.3.2 Recruitment Strategies ......................................................................................... 42 3.4 Data Collection ................................................................................................................... 43 3.4.1 Interviews ................................................................................................................ 43 3.4.2 Photo-production ..................................................................................................... 44 3.5 Data Analysis Process ......................................................................................................... 46 3.6 Thematic Analysis ............................................................................................................... 47 3.7 Ethical Considerations ........................................................................................................ 48 3.7.1 The Participant ........................................................................................................ 48 3.7.2 Photographs ............................................................................................................. 49 3.7.3 Confidentiality ........................................................................................................ 50 3.7.4 Conflict of Interest .................................................................................................. 50 3.8 Conclusion .......................................................................................................................... 51 CHAPTER FOUR: Research Findings .................................................................................... 52 4.1 Introduction ......................................................................................................................... 52 4.2 Context ................................................................................................................................ 52 4.2.1 Participant 1: Natalie ............................................................................................... 53 4.2.2 Participant 2: Aaron ................................................................................................ 53 4.2.3 Participant 3: Charlotte ........................................................................................... 54 4.2.4 Participant 4: Shawn ............................................................................................... 55 4.2.5 Participant 5: David ................................................................................................ 55 4.3 Being the Sibling Diagnosed with Autism Spectrum Disorder .......................................... 56 4.4 A Different Relationship, but it is Not One That is Less .................................................... 58 4.5 Challenging Experiences ..................................................................................................... 60 4.5.1 The Diagnosis ...................................................................................................... 61 4.5.2 Complex and Layered .......................................................................................... 63 4.6 Positive Experiences ........................................................................................................... 66 4.6.1 Reciprocity ........................................................................................................... 66 4.6.2 Bonding ................................................................................................................ 68 4.7 Summary ............................................................................................................................. 70 iv CHAPTER FIVE: Discussion .................................................................................................. 73 5.1 Introduction ......................................................................................................................... 73 5.2 A Different Relationship, but it is Not One That is Less .................................................... 73 5.3 Challenging Experiences ..................................................................................................... 75 5.3.1 The Diagnosis ...................................................................................................... 75 5.3.2 Complex and Layered .......................................................................................... 76 5.4 Positive Experiences ........................................................................................................... 81 5.4.1 Reciprocity ........................................................................................................... 81 5.4.2 Bonding ................................................................................................................ 82 5.5 Strengths of the Research Project ....................................................................................... 82 5.6 Limitations of the Research Project .................................................................................... 88 5.7 Implications for Social Work Practice ................................................................................ 88 5.8 Future Research ................................................................................................................... 90 5.9 Conclusion .......................................................................................................................... 91 References ................................................................................................................................. 93 APPENDIX A: Invitation to Participate ................................................................................ 112 APPENDIX B: Telephone Screening Guide ......................................................................... 113 APPENDIX C: Letter of Invitation ......................................................................................... 114 APPENDIX D: Counseling Services ...................................................................................... 116 APPENDIX E: Interview Guide ............................................................................................. 118 APPENDIX F: Participant Consent Form .............................................................................. 120 APPENDIX G: Transcript Release Form ............................................................................... 123 APPENDIX H: Photography Release Form ........................................................................... 124 APPENDIX I: Literature Review Chart .................................................................................. 125 APPENDIX J: Bronfenbrenner Ecological Systems Theory Diagram ................................... 136 APPENDIX K: Bronfenbrenner Ecological Systems Theory Diagram from a Sibling Perspective……………………………………………………………………137 APPENDIX L: Research Ethics Board Certificate of Approval ............................................. 138 APPENDIX M: Research Ethics Board Certificate of Amendment of Approval .................. 139 v APPENDIX N: Research Ethics Board Certificate of Amendment of Approval ................... 140 APPENDIX O: Research Ethics Board Certificate of Amendment of Approval ................... 141 APPENDIX P: Aaron's Interview Pictures ............................................................................. 142 APPENDIX Q: Charlotte's Interview Pictures........................................................................ 143 APPENDIX R: David's Interview Pictures ............................................................................. 144 APPENDIX S: Natalie's Interview Pictures............................................................................ 145 APPENDIX T: Shawn's Interview Pictures ............................................................................ 146 APPENDIX U: Diagram of Study Themes ............................................................................. 147 vi List of Tables and Figures Figure 1- Diagram of Study Themes ……………………………………………….....57 Figure 2- Bronfenbrenner Ecological Systems Theory Diagram: From a Sibling Perspective……………………………………………………………….........77 Literature Review Chart...............................................................................................125 Bronfenbrenner Ecological Systems Theory diagram..................................................136 Bronfenbrenner Ecological Systems Theory Diagram: From a sibling Perspective....................................................................................................................137 vii Glossary Asperger Syndrome - Asperger Syndrome is a form of Autism Spectrum Disorder that affects children and adults with social interactions. Individuals diagnosed with Asperger Syndrome may also exhibit a restricted range of interests and/or repetitive behaviours (Autism Speaks, 2015). Autism Spectrum Disorder (ASD) - Autism Spectrum Disorder (ASD) is the most severe developmental disability that appears in the first three years of life (American Psychological Association, 2015). The disorder involves challenges in social communication, social interaction and restricted, repetitive patterns of behaviour, interests, or activities (Autism Consortium, 2011; American Psychological Association, 2015). ASD is a single spectrum; however, individuals vary in terms of the severity of ASD symptoms, patterns of onset and clinical course, etiologic factors, cognitive abilities, and associated conditions (American Psychiatric Association, 2013). Family-ecological systems theory - Family-ecological systems theory focuses on entire system, not just parts of a system or an individual (Kothari, 2011; Whiteman, McHale & Soli, 2011). Phenomenology - Phenomenology examines participants’ diverse stories, and explores central, common themes from participants' discussions (Creswell, 2007). Photo-production - Photo-production is an inexpensive and effective method of gathering data from populations so that participants can discuss abstract ideas (White, Bushin, Carpena-Mendez, & Laoire, 2010). Receptive language - Receptive language refers to one's ability to understand what is said or written (Autism Speaks, 2012). viii Sibling -There are many definitions of a sibling relationship: (1) Biological siblings- Two or more people share a relationship and biological parents (Cicirelli, 1995), (2) Half siblings- Two or more individuals share a relationship and have one biological parent (Cicirelli, 1995), (3) Step siblings- Two or more individuals share a relationship without a biological parent in common (Sanders, 2004), (4) Adoptive siblings- Two or more people share a relationship because they are legally adopted into the family (Cicirelli, 1995), (5) Fictive siblings- Two or more people who share a relationship and are accepted into the family without any blood ties or legal criteria (Cicirelli,1995). Sibling with Autism Spectrum Disorder (SWA) - The individual in a family whose sibling has been diagnosed with ASD. ix