Antioch University AURA - Antioch University Repository and Archive Student & Alumni Scholarship, including Dissertations & Theses Dissertations & Theses 2016 Experiences of Neurotypical Siblings of Children with an Autism Spectrum Disorder: A Qualitative Exploration Stacie R. Keirsey Follow this and additional works at: http://aura.antioch.edu/etds Part of the Clinical Psychology Commons, Cognitive Psychology Commons, Counseling Psychology Commons, Developmental Psychology Commons, Early Childhood Education Commons, Family, Life Course, and Society Commons, Other Social and Behavioral Sciences Commons, Personality and Social Contexts Commons, School Psychology Commons, Social Psychology Commons, and the Special Education and Teaching Commons Recommended Citation Keirsey, Stacie R., "Experiences of Neurotypical Siblings of Children with an Autism Spectrum Disorder: A Qualitative Exploration" (2016). Dissertations & Theses. 332. http://aura.antioch.edu/etds/332 This Dissertation is brought to you for free and open access by the Student & Alumni Scholarship, including Dissertations & Theses at AURA - Antioch University Repository and Archive. It has been accepted for inclusion in Dissertations & Theses by an authorized administrator of AURA - Antioch University Repository and Archive. For more information, please contact [email protected], [email protected]. EXPERIENCES OF NEUROTYPICAL SIBLINGS OF CHILDREN WITH AN AUTISM SPECTRUM DISORDER: A QUALITATIVE EXPLORATION A Dissertation Presented to the Faculty of Antioch University Seattle Seattle, WA In Partial Fulfillment of the Requirements of the Degree Doctor of Psychology By Stacie Keirsey December 2016 EXPERIENCES OF NEUROTYPICAL SIBLINGS OF CHILDREN WITH AN AUTISM SPECTRUM DISORDER: A QUALITATIVE EXPLORATION This dissertation, by Stacie Keirsey, has been approved by the committee members signed below who recommend that it be accepted by the faculty of Antioch University Seattle at Seattle, WA in partial fulfillment of requirements for the degree of DOCTOR OF PSYCHOLOGY Dissertation Committee: ________________________ Mary Wieneke, Ph.D. Chairperson ________________________ Steve Curtis, Ph.D. ________________________ Ned Farley, Ph.D. ________________________ Date ii Copyright by Stacie Keirsey, 2016 All Rights Reserved iii 1 ABSTRACT EXPERIENCES OF NEUROTYPICAL SIBLINGS OF CHILDREN WITH AN AUTISM SPECTRUM DISORDER: A QUALITATIVE EXPLORATION Stacie Keirsey Antioch University Seattle Seattle, WA In recent years, the diagnosis of autism spectrum disorder (ASD) has been on the rise, prompting a simultaneous increase in scientific study regarding cause, impact, and intervention (Hughes, 2009; Ravindran & Myers, 2012). Research has proposed advances in the treatment of the individuals diagnosed and focused efforts on scholastic, parental, and professional intervention and supports. However, the siblings of ASD children have largely been neglected in this scientific investigation. The purpose of this hermeneutic phenomenological study was to explore neurotypical siblings’ experiences in living with a child diagnosed with ASD. Seven adolescents were selected using criterion, convenience, and snowball sampling. Data were collected using semi-structured interviews and were analyzed using thematic reflection (van Manen, 1990). Data analysis uncovered seven themes: (a) personal impact, (b) familial impact, (c) social impact, (d) relational understanding, (e) socio-cultural influence, (f) future outlook, and (g) advice. Findings indicated neurotypical sibling experiences contain both positive and negative perceptions of living with a brother or sister diagnosed with ASD. Perceptions were often influenced by the cultural and societal value placed upon normal behaviors. The need for appropriate education regarding ASD etiology, symptomology, and treatment was deemed to be important for NTD siblings, parents, professionals, and society at large. Additionally, the development of social supports for NTD siblings was suggested. The electronic version of this 2 dissertation is at AURA: Antioch University and Repository Archive, https://aura.antioch.edu/ and Ohio Link ETD Center, https://etd.ohiolink.edu Dedication To the friends and family who remind me silver linings exist: I could not have done it without you. Thank you also to the professors, supervisors, and life teachers who inspired me to pursue knowledge. An additional thank you goes out to the participants who willingly gave their voices to this project. Most importantly, I dedicate this work to my own siblings: Jamie, Rebby, and David. I thank the universe every day for our relationships, and marvel that fate brought us together. I could not love you more. iv Table of Contents Page Dedication………………………………………………………………………………………...iv List of Tables ................................................................................................................................ vii I: Introduction ...............................................................................................................................1 Background ...............................................................................................................................1 Statement of Purpose ................................................................................................................3 Research Design Overview .......................................................................................................4 Rationale and Significance .......................................................................................................5 Premises ....................................................................................................................................6 Definition of Terms ..................................................................................................................6 II: Literature Review .....................................................................................................................8 Mental Illness and the Sibling Relationship .............................................................................9 Historical Context of the ASD-NTD Sibling Relationship ....................................................12 Research on ASD-NTD Sibling Relationships .......................................................................14 Summary of Literature Review Findings ...............................................................................22 III: Methodology ...........................................................................................................................23 Research Design .....................................................................................................................23 Recruitment of Subjects ..........................................................................................................24 Data Collection .......................................................................................................................29 Data Protection .......................................................................................................................30 Materials .................................................................................................................................31 Data Analysis ..........................................................................................................................31 Data Quality ............................................................................................................................32 IV: Findings ..................................................................................................................................34 v Personal Impact ......................................................................................................................34 Familial Impact .......................................................................................................................39 Social Impact ..........................................................................................................................43 Relational Understanding .......................................................................................................48 Socio-cultural Influence ..........................................................................................................51 Future Outlook ........................................................................................................................56 Advice .....................................................................................................................................58 Summary .................................................................................................................................62 V: Discussion ...............................................................................................................................64 Addressing the Research Questions ........................................................................................64 Study Implications ..................................................................................................................79 Summary .................................................................................................................................87 References ......................................................................................................................................88 Appendix A: Demographics