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Young Women's Experiences of Having Autism Spectrum Disorder

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Young Women's Experiences of Having Autism Spectrum Disorder Young women’s experiences of having Autism Spectrum Disorder Sarah Bargiela DClinPsy Thesis (Volume 1), 2015 University College London UCL Doctorate in Clinical Psychology Thesis declaration form I confirm that the work presented in this thesis is my own. Where information has been derived from other sources, I confirm that this has been indicated in the thesis. Signature: Name: Date: 2 Overview This thesis focuses on the experiences of high-functioning young women with autism spectrum disorder (ASD). Part 1 reviews the research literature on relationships and sexuality in adolescents and adults with high-functioning ASD (HF- ASD). There is evidence that individuals with HF-ASD are interested in engaging in sexual behaviours and relationships. However, research suggests that autistic traits may affect satisfaction or access to such experiences. Clinical recommendations to support HF-ASD populations include tailored sexuality education programmes for adolescents. Training is also required for professionals to deliver the appropriate support to the parents of individuals with HF-ASD. Part 2 reports on a qualitative study applying Framework Analysis to narratives elicited from fourteen young women with high-functioning ASD. Semi- structured interviews highlighted experiences specific to being a young female with ASD, including delays in getting a diagnosis, vulnerability to abuse in relationships and compensatory strategies used in social situations. Challenges specific to females with ASD were singled out for discussion, as were clinical implications such as the need to increase medical and educational professionals’ knowledge of female ASD and suggestions for future quantitative research. Part 3 discusses some of the advantages and challenges of using a qualitative research approach with individuals on the autism spectrum and how the study findings might affect service provision. Qualitative enquiry was particularly useful to identify themes that might be explored in studies with larger populations, as well as to provide findings leading to the design of quantitative tools. Regarding service implications, GPs and teachers were the two main professional groups by whom many women felt that they had been misunderstood. Developing professional training to raise awareness of female ASD could help with early identification in school and clinical settings. 3 Contents Overview ................................................................................................................ 3 List of Tables ......................................................................................................... 6 List of Figures ........................................................................................................ 6 Acknowledgments ................................................................................................. 7 Part 1: Literature Review ....................................................................................... 8 Abstract ................................................................................................................... 9 Introduction ............................................................................................................ 10 Literature Review Questions .............................................................................. 13 Method .................................................................................................................. 13 Search Strategy ..................................................................................................... 13 Inclusion Criteria ................................................................................................ 14 Results .................................................................................................................. 14 Sexual Behaviours ............................................................................................. 15 Sexual Selfhood ................................................................................................. 28 Sexual Socialisation ........................................................................................... 34 Discussion ............................................................................................................. 37 References ............................................................................................................ 43 Part 2: Empirical Paper ........................................................................................ 49 Abstract ................................................................................................................. 50 Introduction ............................................................................................................ 51 Method .................................................................................................................. 55 Overview ............................................................................................................ 55 Service User Consultation .................................................................................. 56 Ethical Approval ................................................................................................. 56 Recruitment Procedure ...................................................................................... 56 Participants ........................................................................................................ 57 Design ............................................................................................................... 58 Measures ........................................................................................................... 58 Procedure .......................................................................................................... 62 Analytic Procedure ............................................................................................. 62 Disclosure of Researcher’s Perspective ............................................................. 64 Results .................................................................................................................. 65 Results from the HADS and GHQ ...................................................................... 65 Results from the Interviews using Framework Analysis ...................................... 66 Respondent validity ............................................................................................ 81 Discussion ............................................................................................................. 81 Delays in Diagnosis ........................................................................................... 82 Vulnerabilities .................................................................................................... 85 Sociocultural challenges of being a woman with a social communication disorder .......................................................................................................................... 87 Methodological strengths and limitations ............................................................ 88 Future Research ................................................................................................ 90 References ........................................................................................................ 91 Part 3: Critical Appraisal ..................................................................................... 97 Introduction ............................................................................................................ 98 Methodological challenges ..................................................................................... 98 Conducting qualitative research with young women with ASD ........................... 98 Accessing the participants and making the research project accessible ............. 99 Use of language ............................................................................................... 100 Use of interviews ............................................................................................. 101 Piloting the questionnaire ................................................................................. 102 Service user consultation ................................................................................. 102 4 Relationships in qualitative research: continuity of rapport ............................... 103 Ethical considerations ...................................................................................... 104 Influence of previous experiences of working with ASD ................................... 105 Implications of the current findings for service provision and future research ... 106 References .......................................................................................................... 108 Appendices ........................................................................................................ 109 Appendix 01: Studies excluded from the literature review ................................ 110 Appendix 02: Ethical Approval ......................................................................... 111 Appendix 03: Recruitment information on the website ...................................... 113 Appendix 04: Recruitment flyer posted on forums ............................................ 114 Appendix 05: Information Sheet ....................................................................... 115 Appendix 06: Directions
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