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Traumatic Stress in Parents of Children with Autism Spectrum Disorder

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Traumatic Stress in Parents of Children with Autism Spectrum Disorder Traumatic stress in parents of children with autism spectrum disorder By Michelle Stewart BA(Psych), GDipBA, GDip(Psych) Submitted in partial fulfilment of the requirements for the degree of Doctor of Psychology (Clinical) Deakin University August 2016 PTSS in parents of children with ASD IV Acknowledgements Firstly, I would like to sincerely thank my primary supervisor, Associate Professor David Austin. Your passion for our project, continual optimism, encouragement, and guidance has been incredible. I look forward to continuing to contribute to this emerging area of research with you. I would also like to thank my associate supervisor, Professor Jane McGillivray. You have kept me grounded throughout this process with your wise counsel and your faith in my ability to complete this project has been invaluable. Thank you to Professor David Forbes, Associate Professor Tess Knight, and Dr Mohebbi for sharing your specialised knowledge with me. Your support has been pivotal in producing papers that I am proud to have published. I would also like to express my gratitude to my family for their incredible and unwavering support throughout my doctoral studies. Lawrence, your humour, love, and willingness to listen to me talk about my thesis for countless hours has kept me sane. Wayne and Julie, I could not have asked for more supportive and loving parents throughout this period of time in my life. Finally, to my beautiful friends who have stood by me – even if from afar at times. Thank you for your continual words of encouragement and patience; they have meant the world to me. PTSS in parents of children with ASD V List of peer-reviewed publications and presentations Stewart, M., McGillivray, J. A., Forbes, D., & Austin, D. W. (2016). Parenting a child with an autism spectrum disorder: a review of parent mental health and its relationship to a trauma-based conceptualisation. Advances in Mental Health. doi: 10.1080/18387357.2015.1133075 Stewart, M., Knight, T., McGillivray, J. A., Forbes, D. & Austin, D. W. (in press). Through a trauma-based lens: A qualitative analysis of the experience of parenting a child with and autism spectrum disorder. Journal of Intellectual & Developmental Disability Stewart, M., McGillivray, J. A., Forbes, D., Mohebbi, M., & Austin, D. W. (2016) Posttraumatic stress symptoms in parents of children with autism. Manuscript submitted and accepted for review with Journal of Anxiety Disorders Reprints made with the permission of the publishers. PTSS in parents of children with ASD VI Table of Contents Acknowledgements ................................................................................................... IV List of peer-reviewed publications and presentations ........................................... V Table of Contents ..................................................................................................... VI List of Tables ......................................................................................................... VIII Abstract ..................................................................................................................... IX Chapter 1: Autism Spectrum Disorders .................................................................. 1 1.1 Overview ......................................................................................................... 1 1.2 Diagnosis ......................................................................................................... 2 1.3 Prevalence of ASD .......................................................................................... 9 1.4 Aetiology of ASD ........................................................................................... 9 1.5 Differential diagnosis and co-morbidity ....................................................... 11 Chapter 2: Parenting children with ASD .............................................................. 13 2.1 Autism spectrum disorders and challenging behaviours............................... 13 2.1.1 Elopement..............................................................................................14 2.1.2 Aggression.............................................................................................14 2.1.3. Self-injury.............................................................................................15 2.1.4 Suicidal ideation and attempts...............................................................16 2.2 Impact of challenging behaviours on parent mental health ...................... 16 Chapter 3: Posttraumatic Stress Disorder ............................................................. 21 3.1 Overview ....................................................................................................... 21 3.2 Diagnosis ....................................................................................................... 22 3.3 Prevalence of PTSD ...................................................................................... 32 3.4 Aetiology of PTSD ....................................................................................... 32 3.5 Differential diagnosis and co-morbidity ....................................................... 34 3.6 The PTSD Criterion A controversy .............................................................. 35 3.7 The physiological profile of PTSD in parents of children with ASD ........... 36 Chapter 4: A review of parent mental health and its relationship with a traumatic stress framework .................................................................................... 40 Paper 1................................................................................................................. 41 Authorship Statement .......................................................................................... 42 Chapter 5: Qualitative investigation of traumatic stress in parents of children with ASD ................................................................................................................... 55 Paper 2................................................................................................................. 57 Authorship Statement .......................................................................................... 58 PTSS in parents of children with ASD VII Chapter 6: Quantitative study examining symptoms of posttraumatic stress in parents of children with ASD .................................................................................. 93 Paper 3................................................................................................................. 95 Authorship Statement .......................................................................................... 96 Chapter 7: Discussion ............................................................................................ 121 7.1 General discussion ...................................................................................... 121 7.1.2 Limitations...............................................................................................126 7.1.3 Clinical implications................................................................................127 7.1.4 Future research.........................................................................................130 7.1.5 Conclusion...............................................................................................132 References ............................................................................................................... 133 Appendices .............................................................................................................. 153 Appendix One (Chapter 5) ................................................................................ 154 Qualitative research flyer.............................................................................154 Qualitative study plain language statement..................................................155 Appendix Two (Chapter 6) ............................................................................... 160 Quantitative study recruitment flyer............................................................160 Online quantitative study plain language statement (parent of child with ASD).............................................................................................................161 Online quantitative study plain language statement (parent of TD child)...164 Online quantitative questionnaire ................................................................. 167 PTSS in parents of children with ASD VIII List of Tables Table 1. Diagnostic criteria for Autistic Disorder (DSM-III-R, 1987) ....................... 4 Table 2. Diagnostic criteria for Autistic Disorder (DSM-IV, 1994) ........................... 5 Table 3. Diagnostic criteria for Asperger’s Disorder (DSM-IV, 1994) ...................... 7 Table 4. Diagnostic criteria for Autism Spectrum Disorder (DSM-5, 2013) .............. 8 Table 5. Diagnostic criteria for Posttraumatic Stress Disorder (DSM-III, 1980) ..... 24 Table 6. Diagnostic criteria for Posttraumatic Stress Disorder (DSM-III-R, 1987) . 27 Table 7. Diagnostic criteria for Posttraumatic Stress Disorder (DSM-IV, 2000) ..... 28 Table 8. Diagnostic criteria for Posttraumatic Stress Disorder (DSM-5, 2013) ....... 30 PTSS in parents of children with ASD IX Abstract Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder that has no clear aetiology, cure or standard
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