“What does it mean to me?”: A Q-methodological exploration of the beliefs held about Asperger’s Syndrome/High Functioning Autism when the diagnosis is received in adulthood. Emma Louise Seel Doctorate in Clinical Psychology University of Edinburgh 2008 2 ACKNOWLDEGEMENTS There are many people without whom this project would not have been possible and all deserve recognition and the greatest of thanks. My clinical supervisor, Dr Jill Jones, has supported me from the very conception of the idea and through all the trials and tribulations that followed. I don’t know if I would have made it to the end without her! My academic supervisor, Dr Emily Newman, has kept me on track and answered my many questions. The project has massively benefited from the help of, an anonymous, young woman with Asperger’s Syndrome. This extraordinary young woman collaborated with me on the process of statement development in the project, happily giving her time to help me select the final statement set. It is a very special thank you that she deserves. The members of the locality diagnostic service have all been supportive, particular thanks must go to Professor Stephen Lawrie, Kirsten Haughey, and Alison Ramsay who have been my Local Collaborators on the project. The various support groups and agencies that have listened to my ideas and helped me find space to meet with people have been essential, thank you. Most of all the enthusiasm of all the participants and their willingness to give their time to take part has been amazing and vital to the project. They all deserve the biggest of thanks. Finally, I cannot miss out my family. A big thank you must go to my mum and dad for all the phone calls of support. And to my boyfriend, Marco, who has put up with my tiredness and bad moods (with only a tiny bit of complaint!), he deserves a medal. 3 CONTENTS PAGE Page Title page ……………………………………………………………………. 1 Declaration ……………………………………………………………………. 2 Acknowledgements ……………………………………………………. 3 Contents page ……………………………………………………………. 4 List of Appendices ……………………………………………………………. 6 List of Figures ……………………………………………………………. 7 List of Tables ……………………………………………………………. 8 ABSTRACT …..................................................................................................... 9 INTRODUCTION SECTION ………………………………………….... 10 1.0 Introducing Asperger’s Syndrome and High Functioning Autism. .................................................................................................................... 11 1.1 What are Asperger’s Syndrome and High Functioning Autism? .................................................................................................................... 11 1.2 What are the origins of Asperger’s Syndrome and High Functioning Autism? ............................................................................................ 12 1.3 Are Asperger’s Syndrome and High Functioning Autism different conditions? ............................................................................................ 15 1.4 How common are Asperger’s Syndrome and High Functioning Autism? ............................................................................................ 17 1.5 What causes Asperger’s Syndrome and High Functioning Autism? .................................................................................................................... 19 1.6 How are Asperger’s Syndrome and High Functioning Autism understood in relation to the typically developing population? ................................................................................................................... 20 1.7 Summary ........................................................................................... 26 2.0 Why are we interested in the experience of diagnosis in adulthood? ................................................................................................................... 28 2.1 Diagnosis in adulthood ................................................................... 28 2.2 How is diagnosis of Asperger’s Syndrome and High Functioning Autism in adulthood experienced?..................................................... 33 2.3 Are the beliefs held about Asperger’s Syndrome and High Functioning Autism important? ...................................................... 42 2.4 Summary .......................................................................................... 43 3.0 Q-methodology .............................................................................. 45 4 3.1 History of Q-methodology .................................................................. 45 3.2 Description of Q-methodology ........................................................ 47 3.3 Advantages of Q-methodology ........................................................ 60 3.4 Limitations of Q-methodology ........................................................ 62 3.5 Summary ............................................................................................ 64 4.0 Aims and Objectives of study ........................................................ 65 4.1 Aims and Objectives .................................................................... 65 4.2 Hypotheses ............................................................................................ 66 METHOD SECTION ................................................................................ 67 5.0 Statement development .................................................................... 68 5.1 Ethical and Research & Development Approval .................... 68 5.2 Concourse collection .................................................................... 69 5.3 Q-set selection ................................................................................ 80 5.4 Summary ............................................................................................ 84 6.0 Q-sorting and analysis ................................................................................ 85 6.1 Ethical Approval ................................................................................ 85 6.2 Q-sorting ............................................................................................ 85 6.3 Q-factor analysis ................................................................................ 94 6.4 Summary ............................................................................................ 95 RESULTS SECTION ................................................................................ 96 7.0 Results Section ................................................................................ 97 7.1 Summary of participant sample ........................................................ 97 7.2 Q-factor Analysis ................................................................................ 100 7.3 Factor interpretation .................................................................... 107 7.4 Summary ............................................................................................ 121 DISCUSSION SECTION ................................................................................ 122 8.0 Discussion ............................................................................................ 123 8.1 Overview of study ................................................................................ 123 8.2 Significant findings from the exploration of beliefs .................... 124 8.3 Successes and limitations of the study ............................................ 130 8.4 Clinical Implications .................................................................... 134 8.5 Future Research ................................................................................ 136 8.6 Conclusions ............................................................................................ 137 References ........................................................................................................ 140 Appendices ........................................................................................................ 148 5 APPENDICES Page APPENDIX 1.1: Asperger’s Syndrome Diagnostic Criteria (Gillberg & Gillberg, 1989; Gillberg, 1991) ............................................ 149 APPENDIX 1.2: Asperger’s Syndrome Diagnostic Criteria (Szatmari et al, 1989) ................................................................................ 151 APPENDIX 1.3: Asperger’s Syndrome Diagnostic Criteria (APA, 1994) .................................................................................................. 153 APPENDIX 1.4: Asperger’s Syndrome Diagnostic Criteria (WHO, 1993) .................................................................................................. 155 APPENDIX 5.1: REC letter outlining required amendments .................................................................................................. 158 APPENDIX 5.2: Documents in evidence of ethical/Research & Development approval ................................................................................ 162 APPENDIX 5.3: Complete copy of concourse (305 statements) ........ 171 APPENDIX 5.4: Focus group question sheet ............................................ 199 APPENDIX 5.5: Focus group participant information sheet & consent form .................................................................................................. 201 APPENDIX 5.6: Focus group transcription (3 page excerpt) .................... 209 APPENDIX 5.7: Website listings for statement development .................... 213 APPENDIX 5.8: