Becoming Autistic: How do Late Diagnosed Autistic People Assigned Female at Birth Understand, Discuss and Create their Gender Identity through the Discourses of Autism? Emily Violet Maddox Submitted in accordance with the requirements for the degree of Master of Philosophy The University of Leeds School of Sociology and Social Policy September 2019 1 Table of Contents ACKNOWLEDGEMENTS ................................................................................................................................... 5 ABSTRACT ....................................................................................................................................................... 6 ABBREVIATIONS ............................................................................................................................................. 7 CHAPTER ONE ................................................................................................................................................. 8 INTRODUCTION .............................................................................................................................................. 8 1.1 RESEARCH OBJECTIVES ........................................................................................................................................ 8 1.2 TERMINOLOGY ................................................................................................................................................ 14 1.3 OUTLINE OF CHAPTERS ..................................................................................................................................... 26 CHAPTER TWO .............................................................................................................................................. 29 WHAT IS AUTISM? ........................................................................................................................................ 29 2.1 WHAT IS AUTISM? ........................................................................................................................................... 29 2.2 THE SOCIOLOGY OF AUTISM ............................................................................................................................... 33 2.3 THE SOCIOLOGY OF DIAGNOSIS ........................................................................................................................... 40 2.4 THE INTRODUCTION OF ASPERGER’S SYNDROME AND NEURODIVERGENT IDENTITIES ...................................................... 50 2.5 CONCLUSION .................................................................................................................................................. 54 CHAPTER THREE ............................................................................................................................................ 56 AUTISM AND GENDER .................................................................................................................................. 56 3.1 THE GENDER DISPARITY IN DIAGNOSIS RATES: IS IT THE CORRECT PICTURE? .................................................................. 56 3.2 SIMON BARON-COHEN AND THE EXTREME MALE BRAIN ......................................................................................... 59 3.3 SOCIOLOGICAL RESPONSES ................................................................................................................................ 63 3.4 GENDER TROUBLE IN AUTISM ............................................................................................................................. 66 3.5 MASKING, PASSING AND COMING OUT ................................................................................................................ 70 3.6 CONCLUSION AND RESEARCH QUESTIONS .............................................................................................................. 80 CHAPTER 4 .................................................................................................................................................... 84 METHODOLOGY ............................................................................................................................................ 84 4.1 INTRODUCTION ................................................................................................................................................ 84 4.2 ANALYTICAL FRAMEWORK AND RESEARCH OBJECTIVES ............................................................................................. 85 4.3 RECRUITMENT OF PARTICIPANTS ......................................................................................................................... 89 2 4.4 PARTICIPANT DEMOGRAPHICS AND IDENTIFICATIONS ............................................................................................... 94 (TABLE SHOWING DEMOGRAPHICS AND PREVIOUS NEUROLOGICAL OR MENTAL ILLNESS DIAGNSOSES) ...................................... 96 4.5 WHY INTERVIEWS? .......................................................................................................................................... 96 4.6 AUTISM, COMMUNICATION AND RESIDUAL MYTHS ................................................................................................ 104 4.7 PRACTICAL APPLICATION THROUGH METHODOLOGICAL ADAPTATIONS ....................................................................... 114 4.8 DATA COLLECTION AND ANALYSIS ...................................................................................................................... 118 4.9 WHAT IS MISSED ............................................................................................................................................ 121 4.10 ETHICAL CLEARANCE ..................................................................................................................................... 123 4.11 CONCLUSION .............................................................................................................................................. 123 CHAPTER 5 .................................................................................................................................................. 125 ANALYSIS I .................................................................................................................................................. 125 ‘LIKE A SQUARE PEG IN A ROUND HOLE’: EXPERIENCES OF GROWING UP WITH UN/KNOWN AUTISM ........ 125 5.1 INTRODUCTION .............................................................................................................................................. 125 5.2 ‘MY BODY DIDN’T FEEL LIKE IT BELONGED TO ME’: THE UN/KNOWING BODY AND THE UN/KNOWN WORLD ...................... 126 5.3 ‘I LEARNT QUITE QUICKLY WHAT WAS ACCEPTABLE AND WHAT WASN'T’: MASKING AS A FORM OF PASSING? ..................... 137 5.4 ‘I WAS AN ODD ONE’: NEGATING DIFFERENCE THROUGH DIFFERENCE ........................................................................ 143 5.5 IN CONCLUSION ............................................................................................................................................. 148 CHAPTER 6 .................................................................................................................................................. 150 ANALYSIS II ................................................................................................................................................. 150 COMING OUT: THE DIAGNOSIS AS A DISCURSIVE EVENT? .......................................................................... 150 6.1 INTRODUCTION .............................................................................................................................................. 150 6.2 ‘SOMETHING WEIRD MEN HAD’: AWARENESS OF AUTISM .................................................................................... 151 6.3 ‘FULL RESEARCH MODE’: PRODUCING KNOWLEDGES ............................................................................................ 154 6.4 'WHO AM I?': THE CONFESSIONAL SPACE OF THE CLINIC? ...................................................................................... 157 6.5 THE DIAGNOSIS AS A DISCURSIVE EVENT? ........................................................................................................... 166 6.6 ‘I STILL THINK I’M TRAPPED IN MY GENDER’: INABILITY TO BECOME AUTISTIC .............................................................. 171 6.7 IN CONCLUSION ............................................................................................................................................. 178 CHAPTER 7 .................................................................................................................................................. 181 DISCUSSION AND CONCLUSIONS ................................................................................................................ 181 3 7.1 INTRODUCTION .............................................................................................................................................. 181 7.2 REVISITING THE RESEARCH CONTEXT AND THE RESEARCH OBJECTIVES ........................................................................ 181 7.3 SUMMARISING THE NARRATIVES ....................................................................................................................... 182 7.5 CONTRIBUTIONS TO THE FIELD OF AUTISM RESEARCH AND LOOKING FORWARD ..........................................................