Seeking Progressive Fit: a Constructivist Grounded Theory Study
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Seeking Progressive Fit: A constructivist grounded theory and autoethnographic study investigating how parents deal with the education of their child with an Autism Spectrum Disorder (ASD) over time Jasmine McDonald BA, DipEd, MSpEd (Hons) This thesis is presented for the degree of Doctor of Philosophy of the The University of Western Australia Graduate School of Education 2010 Abstract The aim of the study was to develop substantive theory about how West Australian (WA) parents deal with the education of their child with an Autism Spectrum Disorder (ASD) over time. Estimated prevalence rates for all forms of ASDs worldwide have risen dramatically over the last 50 years. This has meant that there are an ever increasing number of children with an ASD in Australia who need appropriate educational services to maximize their potential. Despite this increase, there have been relatively few studies undertaken which have investigated how parents deal with the education of their child with an ASD over time. There is a call in the research literature to provide different research methodologies to answer alternative questions in regard to education of an individual with an ASD because of the idiosyncratic nature and progress of the disorder. The preferred source of such information is at the local level where individuals with an ASD, parents and professionals who possess the most authentic knowledge can be found. The study was conceptualized within the social theory of symbolic interactionism and used constructivist grounded theory methods and an innovative use of autoethnographic research methods to develop substantive theory about how WA parents deal with the education of their child with an ASD over time. A series of in-depth case studies investigating six families from diverse backgrounds was conducted. The basis for data collection was semi-structured interviews, participant observation, informal interviews and documentary data sources consistent with the interpretivist qualitative research tradition. Data analysis occurred concurrently with data collection and incorporated open coding, focused coding and member checking that led to generation and confirmation of propositions of the theory. The seeking of progressive fit emerged as the central proposition of the theory generated from this study. This overriding basic social process permeated the lives of parents as they continually dealt with the education of their child with an ASD over time. During this process parents progressed through four indistinct and iterative stages, namely Beginning Battle, Waging War, Strategizing Solutions and Framing Futures. The theory of seeking progressive fit provides a new perspective on how parents deal with the education of their child with an ASD over time. ii Declaration I declare that this thesis is my own work and does not contain work that I have published, nor work under review for publication. I certify that this dissertation does not incorporate without acknowledgement any material previously submitted for a degree or diploma in any university. I also certify that to the best of my knowledge this dissertation does not contain any material previously written or published by another person without due reference being made to this fact in the text. A modified version of American Psychological Association (APA 6th) referencing style is used in this thesis. _________________________________________ Jasmine McDonald iii Dedication I dedicate this to all the parents who have desperately struggled over the years to help their children with an Autism Spectrum Disorder (ASD) realize their educational potential. You continue to be my inspiration. iv Acknowledgements I would like to thank my two supervisors for their support over the seemingly endless passage of the PhD. process. Winthrop Professor Keith Punch showed continued faith in my research abilities and encouraged me to be both innovative and rigorous when writing my PhD. Winthrop Professor Anne Chapman kept a sustained interest in my ongoing work and always provided me with timely and encouraging feedback over the many years needed to complete the PhD. She also gave me much needed emotional support especially during the end stage of my thesis. I am especially grateful to my participants who so willingly and generously shared many painful memories about their often inordinately complex journeys when trying to educate their children with an Autism Spectrum Disorder (ASD). They, like me, wanted others to know what they have experienced so that fellow parents could be saved some of the difficulties they and their children have endured. Their stories revealed a very determined, resourceful and courageous group of parents who fought, often unrelentingly, for their child’s right to be educated in ways that maximized their potential. I also owe much to my fellow ‘study buddies’ who shared my PhD. journey. Lesley, Mignon, Elaine, Angela, Michele, Sandy, Karen, Amy and Suzy encouraged me to have faith in my work and not to surrender to the ongoing feelings of doubt which periodically haunted me. They also gave timely and much needed advice regarding the various stages of the research process. I also wish to thank Jessica for her brilliant help with Endnote. Additionally, I wish to thank Dr. Alan Pritchard who so generously communicated his broad knowledge of the research process. I would also like to thank fellow parent and researcher, Sarah MacDermott MA, who shared some of her extensive professional experiences working in the Autism field with me. Her generous input was especially appreciated. I would also like to acknowledge the University of Western Australia for granting me a scholarship so that I could even contemplate the mammoth task of writing a PhD. Without this support the PhD. would never have been written. Finally, to my family I must give my greatest thanks. They underpinned and supported my entire PhD. journey. In particular, I wish to single out my eldest son. His relentless courage to keep going forward, often in the face of discrimination and persecution, is an eternal inspiration to me. v Tables and Figures Figure 1.1 Theoretical Representation of Seeking Progressive Fit 15 Figure 2.1 Numbers of Students with an ASD in Mainstream 37 DET Schools in 2007 Figure 5.1 Theoretical Representation of 4 Stages Expanded 116 Figure 5.2 Theoretical Representation of Stage 1 119 Figure 6.1. Theoretical Representation of Stages 2 and 3 in 149 relation to the Early Intervention Years Figure 7.1 Theoretical Representation of Stages 2, 3 and 182 4 in relation to the Formal Schooling Years and the Years Immediately Beyond Table D.1 Draft Tabular Representation of the Theoretical 298 Construct Figure F.1 Clustering Diagram Example 302 Figure G.1 Conditional Matrix Example 303 vi Table of Contents Abstract ............................................................................................................................. ii Declaration ....................................................................................................................... iii Dedication ........................................................................................................................ iv Acknowledgements ........................................................................................................... v Tables and Figures ........................................................................................................... vi Table of Contents ............................................................................................................ vii Chapter One: Introduction................................................................................................. 1 Method and Research Design Overview ....................................................................... 4 Theory Overview: The Theory of Seeking Progressive Fit .......................................... 8 Conclusion .................................................................................................................. 16 Chapter Two: Contextual Background ........................................................................... 17 The International Context ........................................................................................... 17 The Australian Context ............................................................................................... 22 The West Australian (WA) Context ............................................................................ 25 Diagnosis. ................................................................................................................ 25 Prevalence. .............................................................................................................. 27 Early Intervention.................................................................................................... 29 General Disability Educational Provision. .............................................................. 31 ASD Educational Provision. ................................................................................... 34 Conclusion .................................................................................................................. 39 Chapter Three: Literature Review ................................................................................... 40 History ......................................................................................................................... 41 Prevalence ..................................................................................................................