Romantic Relationships: An Exploration of the Lived Experiences of Young Women who identify a Diagnosis of Autism Spectrum Disorder SHONA LANDON A thesis submitted in partial fulfilment of the requirements of the University of East London for the Professional Doctorate in Educational and Child Psychology July 2016 Declaration I declare that while registered as a research degree student at UEL I have not been a registered or enrolled student for another award of this university or of any other academic or professional institution. I declare that no material used in this thesis has been used in any other submission for an academic award. I declare that my research required ethical approval from the University Ethics Committee (UREC) and confirmation of approval is embedded within the appendices of this thesis. i Acknowledgements I would like thank you to everyone who has supported me on this research journey, especially my parents, Mike Landon and Pat Maclean. You have both helped so much in countless ways. I would also like to thank my academic supervisor, Dr Miles Thomas, for your support, guidance and enthusiasm for my research; my placement supervisor Dr Rebecca Williamson for being so supportive; Caelin Robinson (for transcribing, proof reading, editing and critiquing); Stephanie O’Grady Walsh (for transcribing); my wonderful friends and family for your encouragement (and patience!) while I have been working hard; my TEP colleagues who are now also friends (especially Orla and Anna for your interview practice acting!); the inspiring researchers who have presented at the London IPA group; and the many kind people who have helped me with participant recruitment. Most importantly, I would like to thank the seven brave women who took the time to share their stories and experiences with me. It was a pleasure and a privilege to meet you. ii Abstract Background: It is well established that diagnoses of autism spectrum disorders are increasing in numbers nationally. There has been a recent and growing awareness amongst clinicians of females on the autism spectrum having unique and different presentations, and that these females may be overlooked for diagnoses until later in life. This focus on females has not been reflected in published research; there is a paucity of research on the unique experiences of females on the autism spectrum. Furthermore, whilst research indicates that some young autistic adults aspire to have, and enter, romantic relationships, previous studies have had a quantitative focus and have not explored the unique experiences of females, hence the need for qualitative research on the lived experiences of romantic relationships of young autistic women. Current research: This qualitative study used semi-structured interviews with six young women (aged 19-29) to gather data on their experiences and aspirations about romantic relationships. Five of these young women had received a formal diagnosis of an autism spectrum disorder and one had self-diagnosed. This study takes a social constructivist epistemological perspective and used interpretative phenomenological analysis to analyse data. Key findings and implications: Key themes for individual participants included relationship violence and abuse, child sexual exploitation and grooming, non-monogamy, unassertiveness in relationships, and rejection. Themes which were found across more than one participant included vulnerability and naivety, asexuality and non-heterosexuality, gender identity and confusion about flirting. The implications of these findings are that young autistic women may be vulnerable to relationship abuse or exploitation. This is the first qualitative study where autistic young women have spoken about their non-typical gender identities and sexualities. A committed romantic partnership is an aspiration for some autistic young women and with an increasing focus on aspirations and preparing for adulthood, educational psychologists will have a role in helping support young women to reach these outcomes. iii Declaration .......................................................................................................................................................... i Acknowledgements ........................................................................................................................................... ii Abstract ............................................................................................................................................................. iii 1. Introduction ............................................................................................................................................... 1 1.1. Chapter Overview ............................................................................................................................. 1 1.2. Autism Spectrum Disorder, Asperger’s Syndrome and High Functioning Autism................... 1 1.3. Autism and Gender .......................................................................................................................... 2 1.4. Romantic Relationships .................................................................................................................. 3 1.5. Romantic Relationships and Autism .............................................................................................. 4 1.6. The National Context ....................................................................................................................... 4 1.7. The Local Context ............................................................................................................................ 5 1.8. Introduction to the Researcher’s Position .................................................................................... 6 1.9. The Current Research Rationale .................................................................................................... 7 1.10. Chapter Conclusion ......................................................................................................................... 7 2. Literature Review ...................................................................................................................................... 9 2.1. Chapter Overview ............................................................................................................................. 9 2.2. The Systematic Search .................................................................................................................... 9 2.2.1. Databases .................................................................................................................................. 9 2.2.2. Inclusion and exclusion criteria................................................................................................ 10 2.2.3. Search terms used .................................................................................................................. 11 2.2.4. Search on EBSCO PsycINFO ................................................................................................. 12 2.2.5. Search on Science Direct ........................................................................................................ 12 2.2.6. Search on SCOPUS ................................................................................................................ 12 2.2.7. Search on EBSCO Education Research Complete................................................................. 13 2.3. Research Findings from the Systematic Review ........................................................................ 13 2.3.1. Summary tables of research articles ....................................................................................... 13 2.3.2. Critical review of the existing research .................................................................................... 18 2.3.2.1. Knowledge, experiences and future concerns of participants with ASD ........................... 18 2.3.2.2. The quality of relationships, including attachment and sexual and relationship satisfaction, associated with one partner or more being on the autism spectrum ................................................... 22 2.3.2.3. Parental concerns regarding sexuality and relationships .................................................. 27 2.4. Literature Review Conclusions ..................................................................................................... 29 3. Methodology and Data Collection ......................................................................................................... 31 3.1. Chapter Overview ........................................................................................................................... 31 3.2. Purpose and Unique Contribution of this Research .................................................................. 31 3.3. Research Questions....................................................................................................................... 32 3.4. Research Philosophy: Ontological and Epistemological Considerations ............................... 32 3.5. Feminist Perspective on Research Design ................................................................................. 33 3.6. Qualitative Design .......................................................................................................................... 33 3.6.1. Choosing a Qualitative Method ..............................................................................................