University of South Florida Scholar Commons Graduate Theses and Dissertations Graduate School 6-11-2009 Lived Experience: Diverse Perspectives on Raising a Child with Autism Heather J. Brace University of South Florida Follow this and additional works at: https://scholarcommons.usf.edu/etd Part of the American Studies Commons Scholar Commons Citation Brace, Heather J., "Lived Experience: Diverse Perspectives on Raising a Child with Autism" (2009). Graduate Theses and Dissertations. https://scholarcommons.usf.edu/etd/1870 This Dissertation is brought to you for free and open access by the Graduate School at Scholar Commons. It has been accepted for inclusion in Graduate Theses and Dissertations by an authorized administrator of Scholar Commons. For more information, please contact Lived Experience: Diverse Perspectives on Raising a Child with Autism by Heather J. Brace A dissertation submitted in partial fulfillment Of the requirements for the degree of Doctor of Philosophy Department of Special Education College of Education University of South Florida Major Professor: Patricia Alvarez McHatton, Ph.D. David Allsopp, Ph.D. Arthur Bochner, Ph.D. Sylvia Diehl, Ph.D. Jeannie Kleinhammer-Tramill, Ph.D. Date of Approval: June 11, 2009 Keywords: disability, families, narrative, qualitative research, life-course theory ©Copyright 2009, Heather J. Brace Table of Contents List of Tables iv Abstract v Chapter One: Introduction 1 Statement of the Problem 1 Research Questions 5 Qualitative Inquiry 6 Researcher Identity 8 Chapter Two: Literature Review 10 Autism Literature 11 Prevalence and History 11 Definition and Characteristics 12 Etiology 13 Diagnosis 15 Family Literature 16 Overview 16 Process 19 Coping/Stress and Caregiver Burden/Satisfaction 23 Narrative 28 i Life Course Theory 32 Chapter Three: Methods 36 Participants 45 Variables 47 Instruments 47 Data Analysis 48 Validity 52 Limitations and Researcher Identity 53 Prologue 56 Chapter Four: Donna and Marty’s Story 60 Chapter Five: Sandra’s Story 91 Chapter Six: Adriana’s Story 114 Chapter Seven: Discussion 138 Overview 138 Donna 142 Sandra 147 Adriana 149 Bringing it Together 154 Researcher Reactions 159 Epilogue 161 References 164 Appendices 190 Appendix A: Demographic Survey 191 ii Appendix B: Interview Protocol 193 Appendix C: Recruitment Flyer 194 About the Author End Page iii List of Tables Table 1 Interactive Interviewing Procedures 41 iv Lived Experience: Diverse Perspectives on Raising a Child With Autism Heather J. Brace ABSTRACT This qualitative study examines the lived experience of culturally diverse caregivers to children with ASD. The study is situated within the theoretical framework of the life-course theory. Specifically, the impact of the transition of diagnosis on the trajectory of the primary caregiver’s life-course is explored. Further, coping mechanisms, caregiver burden/satisfaction, diagnosis, and other components which contribute to the larger construct of lived experience are discussed. Participant stories were obtained through the use of interactive interviewing techniques and transcripts were transformed into a cohesive narrative designed to evoke emotion within the reader while preserving the authenticity of the data. Further, the study contributes to a disability-related discourse which challenges the current deficit model and gives a voice to individuals who may have previously been marginalized based on their cultural and disability-related characterizations. v Chapter One Introduction Statement of the Problem In recent years, the prevalence of individuals who have been identified as having Autism Spectrum Disorders (ASD) has increased dramatically. Specifically, between 1997 and 2006, the number of 6 to 21-year-old children classified as having an ASD in public special education programs increased by 528%, from 42,517 to 224,594 (U.S. Department of Education, 2002). Further, the disorder is four times more prevalent in boys than in girls (Autism Society of America, 2008). The prevalence rate of ASD increases at an annual rate of 10%-17% while the annual cost to support the disability is an estimated $90 billion (Jarbrink & Knapp, 2001). Because of this marked increase in identification, there is a need to promote awareness about the disorder and its implications, as well as investigate the impact of our educational policies on children and families with autism. One challenging issue faced by school systems today is teacher knowledge. Research indicates that there are many strategies that are considered evidenced based practices. For instance, a large amount of research on ASD focuses on the effectiveness of positive behavior support (Becker-Cotrill, McFarland & Anderson, 2003; Carr et al., 1999; Carr et al., 2002; Cole & Levinson, 2002; Fox, Dunlap, & Cushing, 2002; Lucyshyn et al., 2007; Odom et al., 2003; Turnbull et al., 2002; Wehmeyer, Baker, 1 Blumberg & Harrison, 2004; Valdivia, 2007) and other evidence based practices such as social stories (Adams, Gouvousis, VanLue, & Waldron, 2004; Barry & Burlew, 2004; Crozier & Tincani, 2007; Gray, 1998; Ivey, Heflin & Alberto, 2004; Kuoch & Mirenda, 2004; Rust & Smith, 2006; Sansosti, Powell-Smith, & Kincaid 2004; Scattone, Tingstrom & Wilczynski, 2006; Smith, 2001) and augmentative and alternative communication (Bondy & Frost, 2002; Bondy & Frost, 2001; Bryan & Gast, 2000; Charlop-Christy, Carpenter, Le, LeBlanc, & Kellet, 2002; Ganz & Simpson, 2004; Hodgdon, 2001; Kravitz, Kamps, Kemmerer & Potucek, 2002; Son, Sigafoos, O'Reilly, Lancioni, 2006; Tincani, 2004). Unfortunately, many individuals, including service providers and other professionals in the field, are unaware how to effectively work with individuals with autism and their families (Autism Society of America, 2008) in a manner that empowers, respects, and acknowledges their lived experience (Knox, 2000). This lack of knowledge in evidence based practices on the part of professionals and service providers impacts the family’s ability to be actively involved in a collaborative educational process. While there is evidence documenting the importance of the family component in intervention design (Baird et al., 2000; Beatson & Prelock, 2002; Prelock, Beatson, Bitner, Broder & Ducker, 2003; Wall, 2004; Wolery & Garfinkle, 2002), there is minimal research pertaining to the lived experiences of and the coping mechanisms employed by primary caregivers (Glidden, Billings & Jobe, 2006) of children with ASD . Additionally, culturally diverse families (Harry, 2002) of children with autism (Zhang & Bennett, 2003) have also been under researched. Specifically, the intersection of race, family coping mechanisms, and autism has been overlooked (Dyches, Wilder, Sudweeks, 2 Obiakor, Algozzine, 2004); as autism is evident across racial and ethnic groups, and its prevalence rate continues to increase (United States Department of Education, 2002), it is critical that future research examine the intersection of these constructs. The lack of research on coping mechanisms and lived experiences of primary caregivers to individuals with ASD is problematic as it has the potential to provide professionals with the information they need to improve service accessibility for individuals with ASD and their families. The family story has the power to provide first- hand accounts of what it is like to raise a child with ASD, along with the perceived needs of the primary caregiver(s). However, existing family-related literature on ASD is primarily comprised of memoirs written by parents of individuals with ASD (Fleischman, 2004; Green, 2003; Rubin, 2007). In addition to the memoirs of parents with children with ASD, quantitative, mixed-method, and qualitative studies exist that examine and document caregiver burden, satisfaction, coping mechanisms, and well-being of caregivers of children with disabilities, but not ASD specifically. (Banks, 2003; Glidden et al., 2006; Green, 2007; Green, 2003; Leiter, Krauss, Anderson & Wells, 2004; Pruchno, Patrick & Burant, 1997). There is a need for research to examine the coping strategies, well-being, and caregiver satisfaction/burden experienced by caregivers to individuals with ASD. This differentiation is needed due to the relatively emergent nature of and the uncertainties associated with ASD. How do caregivers cope with this uncertainty? How does the unknown impact the life course of the primary caregiver? Transitions, associated with the life course perspective, are life-changing events that may have an impact on social status, identity, and role involvement (Elder, 1985). The diagnosis of a child with ASD would 3