The many faces of Asperger syndrome A study of the education, employment and intimate relationship experiences of adults with Asperger syndrome in South Australia by Mr. Matthew Bennett, B.Soc.Sc. (Hons.) M.Soc.Sc. A thesis submitted in fulfilment of the requirements for the Degree of Doctor of Philosophy in the Department of Disability and Community Inclusion, School of Health Sciences, Faculty of Medicine, Nursing and Health Sciences, Flinders University. July, 2016. Acknowledgements I would like to thank the participants for expressing their views and experiences. Each participant was intelligent, thoughtful and articulate, and the depth and richness of detail in their answers made this research possible. I would also like to thank the staff at AutismSA and Community Bridging Services [CBS] who helped me recruit participants. I especially owe a debt of gratitude to Mr Jon Martin, Mrs Louise Davies and Ms Katherine Annear from AutismSA and Mrs Corrie vander Keyl and Mr Freddie Brincat from CBS. I would also like to thank my Principal supervisor, Dr Brian Matthews, and my Associate supervisor, Associate Professor Caroline Ellison for their support and guidance. I will forever hold a debt of gratitude to them. I would also like to thank Dr Sheila James, Dr Louise Reynolds, Dr Emma Goodall and Dr Michael Savvas for reviewing my work. These academics are intellectually gifted and without their assistance and feedback this thesis would not have been produced. I would also like to thank Dr Kevin Stoddart, Director of the Redpath Centre, for his guidance and advice in the creation of this thesis. I would also like to thank the Senior Administrative Officer, Mrs Peggy Essl, and the other administrative staff in the Department of Disability and Community Inclusion. I would also like to thank my parents, Peter and Chris, and my brother, Sam, for their love and support as I pursued this research. I would also like to acknowledge and thank my good friends Mrs Gail Kodeng, Mr Dragan Bekric, Ms Donna Chapman, and Mr George Sutanovic for their support during the writing of this thesis. Writing a PhD thesis is a time consuming exercise which takes one away from friends. However, while I isolated and immersed myself in my research, my friends did not abandon me. It was their unobtrusive presence in my life which gave me the support and freedom I needed to study and write. Thank you. - I - Abstract Asperger syndrome is a condition characterised by limited social abilities, repetitive patterns of behaviour, limited motor movement abilities, sensory sensitivities, a restricted set of interests, compulsive and ritualised behaviour, and verbal communication limitations. People with this syndrome are considered to occupy the higher functioning section of the autism spectrum of disorders. Despite having average to above average intelligence, they typically exhibit a limited awareness of common social understandings and a lack of ability to pick up on social cues. Despite the vast and growing amount of literature about the autism spectrum, there has been a relatively small amount of research conducted on the lived experiences of adults with Asperger syndrome. Previous research has tended to focus on the experiences of children and their parents. This study seeks to address this gap by focusing on examining the lived experiences of adults with Asperger syndrome. More specifically, this research provides insights into their views and experiences of education, employment, depression and suicidal ideation, parenting and intimate relationships. Twenty-one adults with Asperger syndrome from AutismSA or Community Bridging Services participated in this study. Drawing inspiration from phenomenology, this qualitative study used phenomenological elements to present the participants’ views and experiences. Each participant attended two in-depth interview sessions. During the first interview session they were asked to describe their experiences of living with Asperger syndrome and attending school. During the second interview session they were asked about their experiences and views of employment and intimate relationships. Each interview session was transcribed verbatim and then thematically analysed. An important contribution of this study to the literature is the application of Erikson’s Theory of Psychosocial Development to the lived experiences of adults with Asperger syndrome. This theory provides a conceptual framework for understanding how the growth and development of adults with Asperger syndrome can be influenced by their opinions and experiences. For example, this study explains how the participants’ job interview experiences have influenced their ability to find employment and their sense of identity and value to the community. In addition, this study proposes a series of recommendations aimed at promoting better opportunities in the future lifespan development of people with Asperger syndrome. - II - Declaration The many faces of Asperger syndrome A study of the education, employment and intimate relationship experiences of adults with Asperger syndrome in South Australia I certify that this work does not incorporate without acknowledgement any material previously submitted for a degree or diploma in any University and that to the best of my knowledge and belief it does not contain any material previously published or written by another person, except where due reference is made in the text. Signed ............................................................. Mr. Matthew Bennett Monday, 11th July 2016 This thesis is Copyright © - III - Index Acknowledgements.............................................................................................. I Abstract ............................................................................................................... II Declaration ........................................................................................................ III List of Tables ................................................................................................... XII List of Figures ................................................................................................ XIII List of Appendices ..........................................................................................XIV List of Abbreviations ...................................................................................... XV Glossary ...........................................................................................................XVI Explanatory note about diagnostic terms ....................................................XIX Chapter One - Introduction ................................................................................ 1 1.1 A brief overview of Asperger syndrome ........................................................................ 1 1.2 The researcher’s position on this study .......................................................................... 4 1.3 The contributions this study makes to the literature on adults with Asperger syndrome ........................................................................................................................................ 7 1.3.1 Exploring how adults live with Asperger syndrome.......................................... 7 1.3.2 Discovering new views from adults with Asperger syndrome on how their friends and family emotionally reacted to their diagnosis of Asperger syndrome ............................................................................................................ 7 1.3.3 Exploring the views that adults with Asperger syndrome have on the Australian public’s knowledge of Autism Spectrum Disorders ........................ 8 1.3.4 New insights into how adults with Asperger syndrome live with depression and suicidal ideation .......................................................................................... 8 1.3.5 Uncovering the school bullying experiences of adults with Asperger syndrome ............................................................................................................................ 8 1.3.6 Exploring the job interview experiences of adults with Asperger syndrome .... 9 1.3.7 Understanding how adults tell their workplace colleagues that they live with Asperger syndrome ............................................................................................ 9 1.3.8 Discovering the views and experiences of adults with Asperger syndrome on parenting .......................................................................................................... 10 - IV - 1.4 Broader consequences of this research ........................................................................ 10 1.4.1 Dispelling inaccurate media representations of adults on the autism spectrum .......................................................................................................................... 10 1.4.2 Improving society’s understanding of the autism spectrum ............................ 11 1.4.3 Adding to the limited amount of qualitative research on adults with Asperger syndrome .......................................................................................................... 11 1.4.4 Helping the next generation of adults with Asperger syndrome...................... 11 1.5 Overview of the Remaining Chapters .......................................................................... 12 1.5.1 Chapter Two: A Review of the Literature ....................................................... 12 1.5.2 Chapter