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“Don't treat autistic people like they're a problem, because we're not!”: An exploration of what underpins the relationship between masking and mental health for autistic teenagers Louise Chapman D.Clin.Psy Thesis (Volume 1), 2020 University College London 1 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: Louise Chapman Date: 11th July 2020 2 Overview Autistic people have described masking, or ‘camouflaging’, parts of the self in order to avoid repeated bullying, discrimination, social rejection and in order to meet neuro-normative social expectations. This thesis explores the relationship between autistic people’s experiences of masking and mental health. This thesis is one of multiple UCL doctoral projects investigating masking in autistic teenagers. Part 1 is a conceptual introduction to autism, mental health and masking. Explanations for the increased prevalence of mental health difficulties for autistic people are explored. Masking is identified as a potential factor mediating this relationship. The review discusses different ways of conceptualising masking and explores the drivers and consequences of masking for autistic people. The review concludes with a summary of existing research into the relationship between masking and mental health difficulties. Part 2 is a qualitative study seeking to understand autistic teenager’s experiences of masking and how this relates to their mental health. Semi structured interviews were conducted with 20 autistic teenagers and transcripts were analysed using thematic analysis. Bidirectional relationships between masking and negative mental health related factors, and conversely between authenticity and positive mental health related factors, were described. Both processes were driven by social and environmental factors. The findings support a broader conceptualisation of masking and have implications for diagnostic and therapeutic clinical services. Part 3 is a critical appraisal of the research process. Personal reflexivity is used to consider the impact of the researcher’s perspective on the research. Introspection is used to identify broader theoretical perspectives to inform system- 3 level implications of the research. Reflections on the essentiality of co-production are also presented. 4 Impact Statement Academically, this study broadens the existing conceptualisation of autistic masking. It adds detailed qualitative descriptions from autistic teenagers about their experiences of masking. The sample includes 10 autistic teenagers who identified as male and 10 who identified as female which is particularly useful as previous research into masking has often focused on autistic girls. Previous research has identified that autistic teenagers are more likely to experience mental health difficulties and that there is a statistical association between masking and mental health. The current study identifies some of the factors and processes involved in these relationships. The current study also provides suggestions for improvements to academic teaching about autism, in order to change social narratives about autistic people. Outside of academia the current research has several clinical implications. As an understanding of masking develops, clinicians in autism diagnostic services can improve their identification of autistic young people who do not meet inadequate criteria or outdated clinical profiles. Diagnostic tools can also be improved according to a more detailed understanding of masking. The results of this study can also help to inform post-diagnostic support and information offered to families. It emphasises the importance of the information giving being non-pathologising and aiming to foster a positive autistic identity and support to identify environments likely to facilitate authentic expression and interactions. Additionally, this study has important implications for therapeutic interventions for autistic young people experiencing mental health difficulties. Therapists must have a good understanding of masking, the social environmental 5 drivers of both masking and mental health difficulties and the mental health consequences of masking. Masking, social and environmental factors, and societal messages about autism should be built into psychological formulations. A further impact of this study is highlighting the potential long-term negative consequences of social skills groups for autistic young people. The study should be used to encourage identity positive group interventions, which are co-produced and facilitated by autistic adults. Finally, this study highlights a need for system-level changes across clinical, research and educational settings in order to move away from the damaging deficit- based narratives of autism currently embedded. 6 Table of Contents Overview ..................................................................................................................... 3 Impact Statement ....................................................................................................... 5 List of Tables and Figures ....................................................................................... 10 Acknowledgements ................................................................................................... 11 Part I: Conceptual Introduction ............................................................................. 12 Abstract ................................................................................................................... 13 Introduction ............................................................................................................ 14 What is autism? .............................................................................................. 14 Autism and learning disabilities ..................................................................... 16 How likely are autistic people to experience mental health difficulties? ............... 17 Why are autistic people more likely to experience mental health difficulties? ...... 19 Hypothesis one ............................................................................................... 19 Hypothesis two ............................................................................................... 19 Hypothesis three ............................................................................................. 20 Hypothesis four .............................................................................................. 21 What is masking? ................................................................................................... 24 Terminology and definition............................................................................ 25 The “female camouflage effect”? .................................................................. 27 Measuring masking ....................................................................................... 29 Why do autistic people mask? ................................................................................ 31 Impression management................................................................................. 31 Social connection ........................................................................................... 32 Assimilation ................................................................................................... 33 Shame ............................................................................................................. 34 Safety.............................................................................................................. 34 Being undiagnosed ......................................................................................... 35 What are the mental health consequences of masking? ......................................... 35 Stress and anxiety ........................................................................................... 35 Burnout and exhaustion.................................................................................. 36 Depression ...................................................................................................... 37 Loss of identity ............................................................................................... 37 Social isolation and disconnection ................................................................. 38 Suicidality ...................................................................................................... 38 Are there any positive consequences of masking on mental health? ............. 39 Understanding the relationship between mental health and masking? ................... 40 The social model of disability ........................................................................ 40 7 Suppression of emotional expressivity........................................................... 41 Autistic burnout .............................................................................................. 42 A lack of appropriate support ......................................................................... 42 Minority stress model ..................................................................................... 42 What is the relationship between masking and mental health for autistic teenagers? ...............................................................................................................................
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