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The Health of Australian Fathers of Children With

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The Health of Australian Fathers of Children With 1 The Health of Australian Fathers of Children with Autism Spectrum Disorder: Implications for Interventions and Support Monique Seymour BSc (Psych/Psychophysiology), BA (Psych) (Hons) March, 2020 A thesis submitted in partial fulfilment for the requirements for the degree of Doctor of Philosophy (Clinical Psychology) Department of Psychological Science Faculty of Health Arts and Design Swinburne University of Technology 2 Abstract Parents of children with ASD often provide long-term functional care for their child and experience intense demands. Many parents of children with ASD struggle with their own health and experience social isolation. Quality research on the health and experiences of fathers of children with ASD is scarce. As such, clinicians are left with little guidance on how to best support and engage fathers of children with ASD. The overall objective of this thesis by publication was to assess the mental and physical health of Australian fathers of children with ASD, as well as identify contributors to health. Four empirical studies were conducted. Study 1 through to 3 utilised data from the largest population- based study of Australian children and their families, Growing Up in Australia: The Longitudinal Study of Australian Children (LSAC). Study 1 aimed to determine the extent to which fathers of children (aged 8-9 years) with ASD (N = 159) experience psychological distress and physical health issues, and how this compares to fathers of children without disabilities (W/OD) (N = 6578) and fathers of children with other long-term disabilities (LTD) (N = 45). Using the same LSAC sample, Study 2 aimed to identify potential bio-ecological risk and protective factors associated with fathers’ experiences of psychological distress, as compared to fathers of children W/OD. Study 3, utilising the same LSAC sample, aimed to determine differences in perceived social support and unmet support needs between fathers of children with ASD and fathers of children W/OD. Study 3 also aimed to assess whether domains of social support (e.g., tangible, emotional) were associated with fathers’ experiences of psychological distress, along with potential bio-ecological factors which impact fathers’ perceived access to social support. Finally, Study 4 complemented the quantitative studies and drew on qualitative interviews with four fathers of children with ASD. Study 4 aimed to gain further insight into fathers’ subjective 3 experiences of mental health support needs and barriers to access, which might not have been captured in the quantitative studies. Findings from Study 1 indicated one in six fathers of children with ASD were struggling with their mental or physical health. Moreover, fathers of children with ASD were at increased risk of experiencing health issues compared to fathers of children W/OD. Study 2 revealed that experiencing depression in the past, perceiving that there is little social support available, and poor workplace conditions (e.g., lack of autonomy or flexibility) increased the risk of psychological distress for fathers of children with ASD. The findings of Study 3 identified that over 70% of fathers of children with ASD reported that support was inaccessible when needed. These fathers were also significantly more likely to report that they were unable to access support compared to fathers of children W/OD. While no bio-ecological factors were associated with social support for fathers of children with ASD, emotional/informational support strongly influenced fathers’ mental health. The qualitative results from Study 4, revealed that fathers report a need for time for self-care and respite, along with practical, financial, professional and social support to protect their mental health. Moreover, fathers identified barriers which impacted their access to and engagement with support. These barriers included being time poor, guilt and burden, lack of understanding from peers, small social networks, mother-child focus services, and processes and culture within services. Taken together, the current research program has generated much needed evidence regarding the health of fathers of children with ASD. The findings support assertions that many fathers of children with ASD are struggling with their health. The current findings also emphasize that the majority of fathers of children with ASD require additional support for their mental health. 4 Declaration “I declare that this dissertation does not incorporate without acknowledgement, any material previously published for a degree in any University, College of Advanced Education, or other educational institution, 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. I further declare that the ethical principles and procedures specified in the Faculty of Health, Arts and Design Human Research Ethics Committee document have been adhered to in the preparation of this report.” Signed: Date: 30/01/2020 5 Acknowledgements First and foremost, I am deeply grateful for my amazing supervisors, Dr Katie Wood and A/Prof Rebecca Giallo for their unwavering support, invaluable wisdom and endless encouragement throughout my candidature. Their confidence in me has greatly shaped my research and clinical career. They have been incredible mentors and colleagues over the course of this research project. I sincerely appreciate their friendship, warmth and guidance. To Sara Allen, thank you for your passion in this area of research. Working alongside you during the qualitative phase of our research projects made the process so much more enjoyable. A special thank you to my cohort and friends at Swinburne for sharing coffee, along with the ups and downs of clinical coursework and our research projects. A heartfelt thank you to my friends, and especially my beautiful family. Each one of you have wholeheartedly supported me over this time. Thank you for being a shoulder to cry on, a welcomed distraction, cheerleaders, and for keeping me grounded. I have been able to rely on them for their unwavering emotional and practical support. During this research journey I also became a mother; I can attest to the saying “it takes a village to raise a child”. But I think it also truly takes a village to complete a PhD. To my parents in particular, I would not have been able to complete this PhD or be the mother I am today without their unconditional love and support. Finally, to my partner, Jack, and our son, Harvey. Jack, you have been my greatest supporter throughout this journey. You have shared the sacrifices and commitment of this research project. I would not have made it through without your belief in me. I love you. Harvey, your innocence, laughter and pure love have exceeded my expectations of becoming a mother. You have brought me so much joy. I look forward to sharing this next stage with my beautiful family. 6 Table of Contents Abstract ..................................................................................................................................... 2 Declaration................................................................................................................................ 4 Acknowledgements .................................................................................................................. 5 List of Reviewed Papers as Part of Thesis ........................................................................... 15 List of Conference Presentations throughout Candidature ............................................... 16 List of Tables .......................................................................................................................... 17 List of Figures ......................................................................................................................... 18 List of Acronyms .................................................................................................................... 19 List of Appendices .................................................................................................................. 20 Chapter One: Introduction and Thesis Overview .............................................................. 21 1.1 Background ............................................................................................................... 21 1.2 Thesis Objective........................................................................................................ 26 1.3 Thesis Overview ....................................................................................................... 29 Chapter Two: Autism ............................................................................................................ 31 2.1 Overview ................................................................................................................... 31 2.2 Classification and Diagnosis of ASD ....................................................................... 31 2.3 Comorbidity .............................................................................................................. 34 2.4 Aetiology of ASD ..................................................................................................... 37 2.4.1 Neurobiology ............................................................................................... 37 2.4.2 Genetics ....................................................................................................... 38 2.4.3
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