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An Exploration from a Life Course Perspective of the Transition from School for Autistic Young People

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An Exploration from a Life Course Perspective of the Transition from School for Autistic Young People An Exploration from a Life Course Perspective of the Transition from School for Autistic Young People Caitlin Marie Taggart Bachelor of Arts (Psychology) Master of Occupational Therapy Studies A thesis submitted for the degree of Doctor of Philosophy at The University of Queensland in 2018 School of Health and Rehabilitation Sciences Abstract The transition from school is a feature of typical adolescence, but can be challenging for autistic young people. While their experiences at school can be difficult, schools also afford structure and routine and can provide external support for young autistic people and their families. They provide reasonably predictable social networks as well as opportunities to encounter others outside of the family. Upon leaving school, autistic young people lose ready access to expected routines and established social groups and often disengage from the community. For many, the transition from school is confusing and stressful. In this thesis, I explore, from a life course perspective, the transition from school for autistic young people without intellectual impairment. Life transitions involve relinquishing some roles and adopting others. Adopting new roles such as worker, homemaker, parent and spouse, which are more complex and less predictable than the role of school child, can be problematic for autistic young people. For example, the unpredictability of interview processes and environments (e.g., the questions to be asked, bright lights, distracting noises) can make getting a job difficult. Difficulties identifying and responding to unspoken social rules and workplace routines can result in loss of employment. The transition from school is one of many turning points within a person’s whole life. This transition follows experiences earlier in life (e.g., childhood and at school) and precedes later life stages. It also occurs in particular social and historical contexts. For example, current education provision in Australia is shaped by the inclusive education policies. In this research, I used focused ethnography to explore the following research questions: “What are the experiences and perceptions of autistic young people, their parents and caregivers and professionals of the transition from school for autistic young people?” and “What are the factors that help overcome obstacles for autistic young people during this transition?”. To learn from those directly involved in the phenomenon, I accessed three informant groups: autistic young people, parents and caregivers of a child on the Autism spectrum and professionals who work with autistic young people during the transition from school. The majority of the data were Page 1 of 261 collected through participant-observation and recorded as field notes, with a small number of semi-structured interviews being conducted, audio-recorded and transcribed verbatim by the researcher. I gathered data from autistic young people in a range of social settings. In the role of observer-as-participant I attended transition meetings with school staff, a weekly social group over 10 weeks and a transition from school program (Studio G) fortnightly over 20 weeks. This prolonged engagement allowed me to build rapport with autistic young members of these groups, providing a foundation for conducting semi-structured interviews. In the role of participant-as-observer, I attended workshops and conferences over four years and had informal discussions with other delegates. At one conference, I participated in a week-long mentoring program for autistic young delegates in which I helped navigate their choice of concurrent sessions and facilitated debriefing discussions after sessions. I explored specific issues with people in the Autism community through a secret social-media group. I also conducted interviews with autistic young people, who heard about my research and contacted me. Parent and caregiver informants and professionals (allied health, school staff and those specialising in working with autistic young people) participated in informal discussions, mostly at conferences and workshops. A small number of discussions with parents and caregivers occurred in my role as an occupational therapist working with their children. Using constant comparison, I engaged in an iterative cycle of analysis and interpretation that changed as I collected more data and understood the phenomena better. I discussed interpretations with key informants to ensure the research findings were trustworthy and extensive. The findings indicated that a complexity of factors impacted on the transition from school for autistic young people. These included: co-occurring mental health challenges (e.g., anxiety and depression) and expectations from parents and caregivers. Seven factors appeared supportive of a successful transition. These were: 1) Having positive family supports, 2) Learning how to self-advocate, 3) Accessing the right supports at school, 4) Using strengths and passionate interests, Page 2 of 261 5) Mentoring, 6) Self-employment and 7) Autism awareness and acceptance in the community. The importance of the autistic culture pervaded the findings. The issue of diagnosis was raised often, revealing a variety of experiences. While some people were diagnosed later, particularly females, receiving a diagnosis generally enabled them to find a community and develop a greater understanding of themselves. Understanding the transition from school for autistic young people from a life course perspective highlights the importance of earlier life experiences and expectations of the future, as well as the broader social and historical context in which the autistic young person lives. This includes the existing autistic culture, which can offer autistic young people and their families a sense of belonging, acceptance and a healthy self- identity. Page 3 of 261 Declaration by Author This thesis is composed of my original work, and contains no material previously published or written by another person except where due reference has been made in the text. I have clearly stated the contribution by others to jointly-authored works that I have included in my thesis. I have clearly stated the contribution of others to my thesis as a whole, including statistical assistance, survey design, data analysis, significant technical procedures, professional editorial advice, financial support and any other original research work used or reported in my thesis. The content of my thesis is the result of work I have carried out since the commencement of my higher degree by research candidature and does not include a substantial part of work that has been submitted to qualify for the award of any other degree or diploma in any university or other tertiary institution. I have clearly stated which parts of my thesis, if any, have been submitted to qualify for another award. I acknowledge that an electronic copy of my thesis must be lodged with the University Library and, subject to the policy and procedures of The University of Queensland, the thesis be made available for research and study in accordance with the Copyright Act 1968 unless a period of embargo has been approved by the Dean of the Graduate School. I acknowledge that copyright of all material contained in my thesis resides with the copyright holder(s) of that material. Where appropriate I have obtained copyright permission from the copyright holder to reproduce material in this thesis and have sought permission from co-authors for any jointly authored works included in the thesis. Page 4 of 261 Publications during Candidature No publications. Publications Included in this Thesis No publications. Page 5 of 261 Contributions by Others to the Thesis No contributions by others. Statement of parts of the Thesis Submitted to Qualify for the Award of another Degree None. Research Involving Human or Animal Subjects This study received ethical approval through the University of Queensland Behaviour and Social Sciences Ethical Research Committee (2010001324). Over the course of the research, a further four amendments were obtained (Appendix 1). Page 6 of 261 Acknowledgments I would like to acknowledge the numerous people who were involved in supporting me through this journey. Firstly, I would like to share my sincere appreciation to my advisory team, Dr. Merrill Turpin, Dr. Jill Ashburner and Professor Jenny Ziviani. This thesis would not have been possible without your advice, inspiration, support and guidance. Merrill, I want to express my deepest gratitude to you for dedicating time to read through my work and to keep me moving forwards. I have learnt an incredible amount from working with you over the past seven years. You continue to inspire me and encourage me to think deeper and with clarity. Jill and Jenny, thank you for your patience in reading through endless drafts and for contributing your expertise and thoughts. I cannot express my gratitude enough. Thank you to Professor Sylvia Rodger, who supported me when I first expressed interest in completing further study in Autism, all those years ago. Thank you for your advice during my candidature. Your knowledge in the field of Autism Spectrum Conditions (ASC) is extensive and your drive to create practical changes to people’s lives is inspiring. I wish to thank everyone involved in the Autism Queensland (AQ) social groups and the Studio G Post-School Transition Program, particularly Dr. Michael Whelan and David McCartney. Thank you for the conversations, advice and opportunities. I would also like to thank Sharon Whip, who I met at APAC (Asia Pacific Autism Conference) in 2015. Thank you for the opportunity to be involved in the mentoring group. This was an invaluable experience in my journey. A very big thank you goes to Jennene Goodall. Jennene, you are an amazing woman, leader, friend and advocate. Thank you for the endless opportunities you have offered. You are a constant source of inspiration and encouragement. Thank you to everyone at the University of Queensland, Life Skills Clinic. In particular, Teresa Quinlan, Maree Maloney and Anne Geddes – thank you for all the laughs and support over the years. You are an amazing and unique group of people to work with. Thank you for guiding and motivating me.
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