Living with Asperger's syndrome - the phenomenon of "not quitefitting in" Suzannah Marie Portway Submittedto City University for the degreeof Doctor of Philosophy St. Bartholomew's School of Nursing and Midwifery October 2006 Table of Contents Acknowledgments 5 Declaration 6 Abstract Chapter one: Introduction 8 1.1 Introduction 9 1.2 Background to the study 9 1.3 Study aim 10 1.4 Rationale for grounded theory methodology 11 1.5 A 'nursing' study 11 1.6 Terms of reference 13 1.7 Structure of thesis 15 1.8 Summary 19 Chapter two: Stock of knowledge: Asperger's syndrome 20 2.1 Introduction 21 2.2 The place of the literature in groundedtheory 22 23 2.3 Asperger's syndrome- historical context debate 29 2.4 Asperger's syndrome- current 2.5 Overview of current researchliterature 33 2.6 Personalexperiences of living with Asperger's syndrome 46 2.7 Gapsin the researchknowledge 53 2.8 Summary 55 Chapter three: Methodology 56 3.1 Introduction 57 3.2 Groundedtheory methodology 57 3.3 Methods 63 3.4 Evaluation of the study 82 3.5 Summary 88 Chapter four: Ethical reflections 89 4.1 Introduction 90 4.2 Planning an ethical study 90 4.3 Dilemmas of data collection 97 4.4 Researcher-participantrelationship 107 4.5 Ethical approval 112 4.6 Impact on researcher 115 4.7 Summary 118 2 Chapter five: Findings - young adults 120 5.1 Introduction to the findings 121 5.2 The core category- not quitefitting in 122 5.3 How young adults feel about themselves 123 5.4 How young adults appearto others 129 5.5 How young adults behave 134 5.6 How othersreact 142 5.7 Summary 148 Chapter six: Findings - parents 150 6.1 Introduction 151 6.2 The core category- not quitefitting in 151 6.3 On still being a parent 154 6.4 On the things parentsdo 157 6.5 On perceivedresponses of others 163 6.6 On costs and benefits to parents 169 6.7 Summary 173 Chapter seven: Theoretical literatures 175 7.1 Introduction 176 7.2 Symbolic interactionism 177 7.3 Sociological conceptsof human difference 182 7.4 Somelessons from mental health and disability studies 186 7.5 Fiction portrayals of human difference 191 7.6 Summary 194 Chapter eight: Discussion of findings 195 8.1 Introduction 196 in 197 8.2 The core category- not quitefitting 8.3 Asperger's syndrome,self and society 202 8.4 Diagnosis and labelling 226 8.5 Summary 234 Chapter nine: Conclusion 238 9.1 Introduction 239 9.2 Summaryof the study 239 9.3 Lessonslearnt 240 9.4 Implications for community health care practice 242 9.5 Recommendationsfor policy and practice 244 9.6 Suggestionsfor further research 249 9.7 Concluding remarks 250 3 Appendices 251 Appendix la: Interview transcript I 252 Appendix IN Interview transcript II 258 Appendix Ic: Documentcoding report 262 Appendix I d: Full coding report 269 Appendix le: Analytic memos 276 Appendix 2a: Participantprofile 278 Appendix 2b: Interview profile 279 Appendix 3a: Letter to potential participants 280 Appendix 3b: Information sheetfor potential participants 281 Appendix 3c: Sampleconsent form 282 Appendix 4: Letter of ethical approval 283 References 284 4 Acknowledgments The completion of this study 'journey' would not have been possible without the support and guidance of many individuals. In particular I would like to acknowledge: A special thank you to my academicsupervisors, Dr BarbaraJohnson and Professor Julienne Meyer from whom I have learnt so much. Dr Johnson has been an extraordinary sourceof expertise,encouragement and support throughout this work. ProfessorMeyer has had a special talent for always 'moving' the study forward at key times. All those who took part in the study for giving of them 'selves' so openly, without whom this study would not have been possible. Also Anne, Jo, Caroline, Dennis, Susanand Dr Tim Williams, for helping so much in the early days. To my health visiting colleagueswho over the years have supported me though times of study leave with understanding,patience and encouragement.I would also like to mention the wonderful librarians at the Graylingwell library. To Fionna and Michelle for special friendships, encouragementand insights. And to my 'proof readers' Chris, Kevin, and Andy - thank you so much. To family, dear Mum and Dad, for 'always being there' with love, support and so much more. My lovely sister Clare, who herself is a very special Mum, and brother Jon for being proud of us. And to Grampsfor his deepdesire to seeme succeed. To my beautiful children, Davy and Rosie, for being you. To Phil, my husbandand best friend - for sharing the journey "Kerever they go, and whatever happensto them on the way, in that enchantedplaceon the top of the Forest... " (A. A. Milne). Finally, I am grateful to the South East Region NHS Researchand Development Departmentfor the award of an NHS fellowship and initial funding, which allowed me to undertakethis researchtraining. 5 Declaration 'I grant powers of discretion to the University Librarian to allow this thesis to be copied in whole or in part without further referenceto me. This permission covers only single copies made for study purposes, subject to normal conditions of acknowledgement'. 6 Abstract This qualitative study explores the experiencesof young adults with Asperger's syndrome and their parents. Using grounded theory methodology, young adults with Asperger syndrome(n=18) aged 18-35 years and parentsof young adults with Asperger's syndrome (n=23) were interviewed. Participants representedtwenty- five families and a total of 42 face-to-faceinterviews with young adults and parents. were conducted. Some interviews were carried out with young adults and parent/s together, others separately. Secondary or other data sources were used in the constant comparison of interview data, this included published personal accounts and notes taken from telephone conservations, meetings and conferences. Theoretical sampling and constant comparative analysis were the processesby which a substantivetheory emergedabout the phenomenonnot quite fitting in -a multi-dimensional conceptthat offers one explanationof the varying experiencesof both young adults with Asperger's syndromeand their parents. The non-obvious nature of Asperger's syndrome was central to the overall experiepceof not quitefitting in for young adults and their parents. Young adults 'looked normal' and had normal levels of intelligence but they behavedin ways that seemed 'socially inept', 'socially awkward', 'inflexible', and 'lacked empathy'. They expressed 'feeling different' from others, and had difficulty identifying a senseof 'self' in relation to others. Parentsalso describedways in which they did not quilefit in to normal expectationsof parenting an adult son or daughter. Parents did not regard themselves,nor were they recognisedby others,as 'informal carers'. Furthermoretheir son or daughterdid not perceivethemselves as being 'cared for'. Nevertheless,the data revealed a considerable amount of 'caring' involved for parents, both psychological (psychological 'watching over', companionship, managing emotions) and practical (providing shelter, food, security, money). Interestingly, this unacknowledged 'caring' was often carried out without the knowledge of young adults, and was both inadvertently and deliberately 'covert' in nature. Through the process of constant comparative analysis, the phenomenon of not quite fitting in was theorised through integrating the findings with other literatures; biographical, empirical and theoretical. Through this process, a symbolic interactionist perspective, derived from the work of G. H Mead (1934) about self and society, emerged as a framework that offered a theoretical explanation for the phenomenon of not quitefitting in. 'Me study also reflects on the many ethical and practical dilemmas of undertaking research with this particular group of participants. Finally, the study has implications for practice and further research in relation to health care professionals, such as health visitors, school nurses and family doctors, who are not specialists but who may come into contact with children and adults 'living with Asperger's syndrome', often before a diagnosis has been made. In concluding the study these implications for practice are briefly outlined for the stimulation of further thought, discussion and research. 7 Chapter one Introduction 1.1 Introduction The study is about the experienceof not quite filing in as experiencedby young adults with Asperger's syndromeand their parents. This introductory chapter will set out the background,aims, terms of referenceand rationalesfor the study, as well as introduce each of the chapters. Finally, the reasonfor locating the study within a department of nursing studies and its relevance to community health care professionals will be argued, recognising that this is an area that somewhat paradoxically does notfit in easily to any of the professionaldisciplines including nursing, medicine, learning disabilities, mental health, social work, or education. 1.2 Background to the study 'Me study was conceived, and began, when I was working with a small autistic charity seeking to highlight the local needsof children and adults with Asperger's syndrome. Working with this charity, I was privileged to meet and conversewith many individuals and families affectedby Asperger's syndromeand attendedmany support groups, seminars,and conferencesfocusing on issuesrelating to Asperger's syndrome. In listening to the difficulties and dilemmas facing many of these families, I found myself wanting to know more about what it means to live with Asperger's syndrome, for those