Emotion Regulation in Adolescents and Young Adults with Autism Spectrum Disorders Damian Francesco Santomauro Bachelor of Science (Honours) A thesis submitted for the degree of Doctor of Philosophy at The University of Queensland in 2015 School of Psychology Abstract Emotion regulation is important for mental health, well-being, social decision making, and financial success, yet limited investigations have been conducted into emotion regulation in adolescents and young adults with autism spectrum disorders (ASD). The aim of this series of studies was to investigate emotion regulation in adolescents and young adults with ASD, report on the prevalence of emotion regulation issues, and to evaluate a group cognitive behavioural intervention aimed at improving emotion regulation skills. Focus groups and interviews were conducted with adolescents and young adults with ASD, parents of adolescents and young adults with ASD, teachers, and psychologists (N = 26), to capture a preliminary picture of emotion regulation in this population, and to probe for triggers of troublesome emotions and successful coping strategies. Next, an online survey was launched (N = 179) to estimate rates of depression and anxiety in this population, and to reveal potential predictors of mood disorder symptoms to be considered for intervention. From the information gathered from the survey, and interventions already evaluated in previous literature, it was concluded that a there was a need for an evaluation of a cognitive behavioural intervention targeting depression in adolescents with ASD. Therefore, the final study of this project was a pilot randomised controlled trial of a cognitive behavioural intervention targeting symptoms of depression. Despite recruitment difficulties (N = 20), there was preliminary evidence to suggest the intervention may be successful in reducing symptoms of depression in this population. The trial is further illustrated by qualitative findings and case studies. I 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, 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 research higher degree 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. II Publications during candidature Santomauro, D., Sheffield, J., & Sofronoff, K. (2015). Depression in adolescents with ASD: A pilot RCT of a group intervention. Journal of Autism and Developmental Disorders. Advance online publication. doi:10.1007/s10803-015-2605-4 Santomauro, D., Sheffield, J., & Sofronoff, K. (in press). Investigations into emotion regulation difficulties in samples of adolescents and young adults with ASD: A qualitative study. Journal of Intellectual & Developmental Disability. Publications included in this thesis Santomauro, D., Sheffield, J., & Sofronoff, K. (2015). Depression in adolescents with ASD: A pilot RCT of a group intervention. Journal of Autism and Developmental Disorders. Advance online publication. doi:10.1007/s10803-015-2605-4 Santomauro, D., Sheffield, J., & Sofronoff, K. (in press). Investigations into emotion regulation difficulties in samples of adolescents and young adults with ASD: A qualitative study. Journal of Intellectual & Developmental Disability. III Contributions by others to the thesis Tony Attwood and Michelle Garnett developed the Exploring Depression programme evaluated as part of this project. Additionally they conducted two full-day workshops to train the probationary clinical psychologists to deliver the programme. The probationary clinical psychologists who helped deliver the programme included John van Beusekom, Jason Coates, Lindsay Cote, Anqi Ho, Emma Hyland, Ashleigh Kunde, Breanna Lancaster, Clarissa Lui, Stacey Lynch, Cora MacHatch, Sam Morrison, Carla Newcombe, Maria Reeve, Lucy Xiao Shi, Elizabeth Spitzer, Bronwyn Steele, Kirsty Taylor, Hugh Walker, and Annette Vasey. Lastly, Kate Sofronoff and Jeanie Sheffield supervised the author and the psychologists delivering the programme. Statement of parts of the thesis submitted to qualify for the award of another degree None. IV Acknowledgements First and foremost I would like to thank my supervisors Kate Sofronoff and Jeanie Sheffield for their supervision, advice, and support over this long journey. Their guidance has been invaluable. I would also like to thank my wife Toni Zhang- Santomauro for her emotional support, and for enduring my vents and complaints about the project over the past few years. Many thanks also go to Tony Attwood and Michelle Garnett for allowing us to trial their Exploring Depression programme, and for running workshops to train the probationary psychologists who delivered the programme content. My thanks also go to the probationary psychologists who volunteered their time to deliver the programme to the adolescents with autism spectrum disorders and their parents. My last thanks go to all the adolescents, parents, psychologists, and teachers who participated in this project. Without their participation, none of this work could be accomplished. Keywords Asperger Syndrome, Autism Spectrum Disorders, Depression, Cognitive Behaviour Therapy, Randomised Controlled Trial, Emotion Regulation Australian and New Zealand Standard Research Classifications (ANZSRC) ANZSRC code: 170106, Health, Clinical and Counselling Psychology, 100% Fields of Research (FoR) Classification FoR code: 1701, Psychology, 100% V Table of Contents Chapter One: Overview of Research Project 1 Chapter Two: Autism Spectrum Disorders 4 2.1. Rationale for Research 4 2.2. Autism Spectrum Disorders 4 2.2.1. Diagnosis of ASD 5 2.2.1.1. Changes in the Diagnostic and 7 Statistical Manual – 5 2.2.2. Social Interaction Deficits 7 2.2.3. Restrictive Repetitive and Stereotyped 8 Behaviours and Interests 2.2.4. Epidemiology 9 2.2.5. Comorbidities 10 2.2.6. Theory of Mind 11 2.2.7. Weak Central Coherence 14 2.2.8. Executive Dysfunction 16 2.2.9. No Universal Theory 17 2.3. Emotion Regulation 19 2.4. Emotion Regulation Difficulties in Autism Spectrum Disorders 23 2.5. Theories Behind Emotion Regulation Difficulties 24 in Autism Spectrum Disorders 2.6. The Need to Further Investigate Emotion Regulation 26 in Autism Spectrum Disorders Chapter Three: Qualitative Investigations of Emotion Regulation in 28 Adolescents and Young Adults with Autism Spectrum Disorders 3.1. Introduction 28 3.2. Methods 28 3.2.1. Participants 28 VI 3.2.2. Procedure 30 3.2.3. Data Analysis 30 3.3. Results and Discussion 31 3.3.1. Triggers of Troublesome Emotions 31 3.3.2. Difficulties of Emotional Awareness 36 3.3.3. Coping Strategies 39 3.3.4. Consequences of Emotions 43 3.3.5. Strengths, Limitations, and Future Directions 46 Chapter Four: A Survey of Emotion Regulation in Adolescents and 48 Young Adults with Autism Spectrum Disorders 4.1. Introduction 48 4.1.1. Model Development 49 4.1.1.1. Hypothesised role of emotion 50 regulation strategies 4.1.1.2. Hypothesised role of social anxiety 50 4.2. Method 54 4.2.1. Participants 54 4.2.2. Measures 55 4.2.2.1. Demographic Information 55 4.2.2.2. Autism-Spectrum Quotient 55 4.2.2.3. Depression Anxiety Stress Scale 55 4.2.2.4. Emotion Regulation Questionnaire 56 4.2.2.5. Sensory Sensitivities Questionnaire 56 4.2.2.6. Social Interaction Anxiety Scale 57 4.2.2.7. Toronto Alexithymia Scale 57 4.2.3. Procedure 58 VII 4.3. Results 58 4.3.1. Data Preparation 58 4.3.2. Rates of Depression, Anxiety, Alexithymia, and 59 Medication Use 4.3.3. Use of Emotion Regulation Strategies 60 4.3.4. Predictors of Depression and Anxiety 61 4.3.4.1. Preliminary Checks 61 4.3.4.2. Testing the Model 63 4.4. Discussion 67 4.4.1. How Prevalent are Symptoms of Depression 67 and Anxiety? 4.4.2. Evaluation of the Model 68 4.4.3. Limitations 71 4.4.4. Conclusions 72 Chapter Five: CBT for Individuals with Autism Spectrum Disorders 75 5.1. Cognitive Behavioural Therapy for Depression 75 5.2. Cognitive Behavioural Therapy for Autism Spectrum Disorders 77 5.3. Adaptations Required for Adolescents with Autism 78 Spectrum Disorders 5.4. Exploring Depression: Group Cognitive Behavioural Therapy 79 Appropriate for Adolescents with Autism Spectrum Disorders. 5.4.1. Self-Awareness and Psycho-Education 80 5.4.1.1. Session 1 80 5.4.1.2. Session 2 82 5.4.2. Physical Activity: Session 3 83 5.4.3. Art and Pleasure Tools: Session 4 85 5.4.4. Thinking, Social, and Relaxation Tools 86 VIII