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Masking in Autistic Children: The Childs Voice
A Masters in Autism
Dissertation
By
Jodie Smitten
Supervisor Dr Luke Beardon
June 2022
CONTENTS
Acknowledgements
Abstract
Introduction
Positionality
Language
Background
This study
Literature Review
What is autistic masking?
Why do autistic people mask?
Masking prevalence
Consequences of masking
Impact: aspects of life experiences impacted by masking
History of masking research
Gaps in research with autistic children & young people
Rationale
Research Questions
Methodology
Research Paradigm
Ontology
Methodology
Phenomenology
Method
Ethics
Co-researchers
Interviews
Consent
Right to withdraw
Confidentiality
Debrief
Researcher safety
Reader safety
Data Analysis
Results
Discussion
Limitations & Conclusion
A final word or two
References
Acknowledgements
In no particular order!
To my children who taught me who I am and have continued to love me on the epic journey which I’ve dragged them along on.
To the children and young people who have given me the privilege of allowing me into your lives. This has never been for those pesky adults. This is for you all.
To all of my fellow autistic professionals who work tirelessly and passionately to have the voices of autistic young people heard.
To Dr Beardon who validated who I am, how I think and how I advocate.
3 years of MA. 3 years of self-discovery. This is not the end of something. It is just the beginning.
Abstract
Autistic masking is a commonly experienced phenomenon within the lived experiences of autistic people (Pearson & Rose, 2021). It is linked with poorer mental health outcomes and increased risk of suicide within autistic communities (Cassidy et al., 2019), as well as being linked to autistic burnout (Mantzalas, 2022). Previous research has neglected or misjudged various aspects of the phenomenon in terms of its complexities and drivers (Pearson & Rose, 2021). Furthermore, within research autistic children’s voices are missing from the masking narrative, with the very recent exception of Chapman (2020). In this research I aimed to raise the voices of actually autistic young people and their experiences of masking, including what it entails, what drives it and what they feel they need from adults.
The rich qualitative data collated from their voices revealed that masking is not choice, masking derives from wanting to be accepted by others, masking is a suppression and a fake expression of both internal and external authenticity, and it most commonly occurs in school. Suppression or fake expression of internal processes showed a possible link to hyper-empathy, which is an important aspect to explore and is a recommendation for future research. Above all, my co-researchers expressed a lack of and a need for communication, trust and empathy from the adults that support them. The implications of the findings and future directions are discussed.
Introduction
Positionality
I am a late diagnosed autistic with many years spent masking. I entered into this piece of research with insight and knowledge gained from twenty years of working with autistic children and being a parent of autistic children. I work with and advocate for autistic children and particularly those that mask: therefore, it was important to me that I took an ethnographic approach to this research, working in collaboration with my co-researchers to ensure we had the true voices of those experiencing the phenomenon of masking. As I am autistic, when I use the term ‘we’ I am referring to the autistic community.
Language
Throughout this dissertation I will be using identity first language; I will be referring to ‘autistic people’ as opposed to ‘people with autism’, firstly because this is the preferred language of the majority of the autistic community (Kenny et al., 2016) but also because, as an autistic person, being autistic is me: it is my identity and my being. One cannot be separated out from their autism (Sinclair, 2013). Equally, when working with autistic children and young people, I promote self-acceptance and positive self-identity. To ‘have’ autism is congruent with the medical model-based language around a ‘diagnosis’ (e.g., Diagnostic and Statistical Manual of Mental Disorders, 5th ed., 2013). It is all very deficit based, very something is ‘wrong’ with me (Sinclair, 2013). Essentially the diagnosis procedure requires us to ‘fail’ as a non-autistic person to ‘pass’ as an autistic person. A diagnosis is associated with an illness that requires curing or fixing. Autism is not an illness and language that implies otherwise is not conducive with positive self-identity (Sinclair, 2013) and directly relates to the stigma that causes masking and mental health difficulties in the autistic community (Botha, Hanlon & Williams 2021). Therefore, the preferred term I use is to be identified autistic or, as I use when working with children, to discover you are autistic, as this gives a sense of excitement and something to explore. I refer to it as going on a journey of discovery.
Background
Research into autistic masking developed as a result of the disparities between identification of autistic males versus females (e.g. Wing et al., 1981). Through further research the shift changed with the realisation that autistic masking has negative implications on self-identity and mental health and is a contributor to autistic burnout, suicidal ideation and suicide (Cassidy, et al. 2019; Chapman, 2020; Pearson and Rose, 2021; Higgins et al., 2021, Mantzalas, 2022). However, masking was still seen by many as a phenomenon that we (i.e. autistic people) had conscious control over and chose to do simply to ‘fit in’ (Hull et al., 2017). This assumed understanding of autistic masking is naive and far too simplistic and has had negative impacts on approaches and attitudes towards supporting autistic people who mask (Pearson & Rose, 2021). The complexities of masking itself and the hows and whys of masking development are yet to be explored fully in autism research (Pearson & Rose, 2021). The current research available focuses on almost wholly autistic adult experiences and in particularly autistic females (e.g., Hull et al. 2017; Hull et al., 2020; Tubío-Fungueiriño, 2021). Chapman’s research is important: her 2020 paper is one of the only pieces of research to explore actually autistic young people’s experiences of masking in depth, producing rich qualitative data. Alongside this, theories around masking (developed by autistic researchers) as related to stigma and discrimination are becoming prominent (Pearson & Rose, 2021; Botha, Dibb & Frost, 2022). These new insights and understandings are vital for the safety and appropriate support of the autistic community.
This study
Within my role I meet so many children and young people that mask with devastating long-term effects: it is clear that the exploration of the experiences of masking in children and young people is not only vital for the mental health of autistic children but also ethically essential. Weekly I meet with children and parents of children who are so mentally unwell they are attempting suicide, unable to leave the house, unable to enjoy their passions and immensely low in mood. These children range from very young primary aged children to teenagers, many of which have spent so many years masking that their whole childhoods have been lost. My drive and passion for this research has never been about being an academic, but rather fighting a deep injustice of the continued harm autistic children are enduring.
Much like Packham (2021) describes for himself, this sense of injustice can be very motivational. In this way a possible researcher bias needs to be considered; however, my co-researchers’ voices speak for themselves. My interviews were co-researcher led. Just as the critics of Greta Thunberg tried to argue that her voice was not truly hers but influenced by adults with hidden agendas (Solender, 2019), my research could be similarly criticised; I would argue that my co-researchers are brave and resilient, especially given what they have to endure in the neurotypical world, and they put themselves forward for this study as they were ready to tell their truth and their authentic narrative. Discounting autistic voices as being inveigled by others simply adds to the deficit narrative that we are working so hard to deflect and could be fuelling the harmful narrative that autistic people are unable to act with agency (Solender, 2019). As a respectful researcher I took steps to ensure they had the safety and autonomy, and in doing so I always assumed competence, as it should be (Hussman, 2017).
The authentic autistic voices of my co-researchers, alongside others, have the power to shift narratives around what is involved in masking, how complex it can be and how it develops. Our autistic voices are gaining momentum in the arena (Arnold, 2019) and the aim is to change attitudes and approaches that will lead to the safety and de-stigmatisation of the autistic community. As Beardon (2019, p.19) states, the ‘reality’ or experience for an autistic person is influenced by the environment. If we want autistic children to have positive experiences, we need to change what’s going on around them.
I will now consider in more depth the previous research into autistic masking and how it has influenced current thinking.
Literature Review
What is autistic masking?
Masking is defined as “the use of strategies by autistic people to minimise the visibility of their autism during social situations” (Hull, et al., 2018 p 819). The autistic community describe it as the suppression of self that occurs due to stigma (Pearson & Rose, 2021), marginalisation and discrimination (Hull et al., 2017; Mandy, 2019). A fuller, more encompassing definition is offered by Pearson and Rose (2021 p 2): “Masking is the conscious or unconscious suppression of natural responses and adoption of alternatives across a range of domains including social interaction, sensory experience, cognition, movement, and behaviour.” This is my preferred definition to base this research on because it both encompasses the many facets of autistic masking and has been developed by actually autistic researchers, as autistic people’s involvement in autism research is vital for good quality production of knowledge (Bertilsdotter, 2019).
Masking can involve supressing emotions, stimming and mimicking others (Holliday-Willey, 1999). Masking has also been referred to as ‘camouflaging’ (Hull et al., 2017); however, the narrative associated with this term tends to focus mainly on a person’s assumed desire to ‘fit in’ with non-autistic people rather than an instinctive drive for safety, derived from the need to avoid negative interactions and trauma (Pearson & Rose, 2020). To best reflect the language most commonly used by the autistic community (e.g. Rose, 2018; Holmans, 2018) the term ‘masking’ will be used throughout this research.
Why do autistic people mask?
The focus was initially on social ‘camouflaging’ and a desire to ‘fit in’ (e.g., Hull et al., 2017; Cook, Ogden, & Winstone, 2018; Dean, Harwood & Kasari 2017), despite autistic communities sharing experiences of masking as a way of remaining safe and avoiding retaliation or bullying (Cage & Trowell-Whitman, 2019; Chapman, 2020). However, emerging theories include the Social Identity Theory conceptualisation of masking (Cage & Troxell-Whitman, 2019; Perry, Hull, Mandy, & Cage, 2021). This theory focuses on the impact of stigma, social norms and societal expectations on autistic people as members of a non-dominant neurotype (Chapman, 2020).
Masking is a survival strategy used to keep oneself safe from negative experiences and therefore can be both a conscious and sub-conscious ‘act’ (Pearson & Rose, 2020). Survival and safety from harm are not always conscious acts, but rather instinctive. To be aware of one’s own masking is a privilege in that so many autistic people have gone unrecognised due to masking, and without this identification leading to access to the autistic community, an individual will likely have no awareness of the concept of masking. Following the publication of my daughter’s book ‘The Secret Life of Rose’ (Smitten, 2021) I had many parents message me to share how relatable the section on masking had been to their children, and now with the knowledge that the phenomenon exists they are able to be much more aware of it and how it impacts them. Equally with the below described negative impact of masking, it is important that both the conscious and subconscious elements of masking are considered in research, as much of the earlier research (as outlined in the ‘History’ section below) has emphasised the conscious act of ‘fitting in’ and somewhat neglected the self-preservation mechanism involved. Pearson and Rose (2021) propose that, due to the levels of exhaustion masking causes, the brain develops an unconscious mechanism in the form of masking to counteract the unsustainable mental effort needed to maintain the mask. Therefore explaining the ‘second nature’ element of masking.
Historically it was thought that females were more likely to mask than males and would do so to ‘evade’ autism identification (Russo, 2018). This idea was first introduced by Wing (1981) who raised the possibility that masking explained the originally believed discrepancy between male and female ratios of autistic children being as high as 4 males to 1 female (Diagnostic and Statistical Manual, 2013). As such, understanding autism within female populations and the diagnostic discrepancies have received much focus in autism research (Wood-Downie et al., 2021). Rose and Smitten (2021) would argue that females experience higher levels of discrimination due to societal expectations as supported by Kreiser & White, (2014) leading to increased risk of trauma and masking for autistic females. Furthermore, it has been discussed that the increased numbers of autistic people represented in LGBTQI+ and specifically transgender communities (George & Stokes, 2018; Murphy et al., 2020). This leads to these individuals experiencing increased stigma due to being part of an additional marginalised group, and therefore they are at greater risk of masking (Perry, Mandy, Hull, & Cage, 2021) and its associated anxiety and depression (Murphy et al., 2020). Masking as a female-only phenomenon has been discounted and has been observed in and reported by male and non-binary autistic adults and adolescents (Hull et al., 2017; Lai et al., 2017; Cassidy et al., 2018; Livingston, Shah, & Happé, 2019). More research is needed into the origins and consequences of masking and its links to stigma, social context and intersectionality if we are to truly understand it (Chapman, 2020; Pearson & Rose, 2021).
Masking prevalence
Research suggests as many as 70% of autistic people mask (Cage, Troxell-Whitman, 2019). The difficulty with fully pinning this down is that masking hinders diagnosis of autistic children (Rose & Smitten, 2021, Wood-Downie et al., 2021) and therefore an accurate representation is hard to achieve. Rose (2021) and Miller, Rees, and Pearson (2021) posit that masking is a human behaviour and therefore all autistics and non-autistics mask to some extent. However, for autistic people, the effort and need to sustain the mask leads to much greater risk of exhaustion and mental health problems (Rose & Pearson, 2020, Rose 2021, Eaton, 2016) and, although there are some overlaps between autistic and non-autistic masking (though all are linked with an individual being marginalised), autistic masking has additional elements, such as suppressions of sensory experiences and stimming, and is linked with an increased risk of suicidal ideation (Miller, Rees & Pearson, 2021).
Consequences of masking
Masking is known to be linked to poorer mental health outcomes including autistic burnout (Raymaker et al., 2020; Higgins, Arnold, Weise, Pellicano & Trollor, 2021; Mantzalas, 2022), suicide, suicide attempts and suicidal ideation (Cassidy et al., 2019), hindering identification (Bargiela, Steward, Mandy, 2016), loss of self-identity (Radulski, 2022) and disconnection from authentic self (Miller, Rees & Pearson, 2021).
Previous research findings that report supposed ‘benefits’ of social adaptation and social acceptance from masking have neglected the often internalised and/or misunderstood negative consequences. There is a probable link here between the problematic narrative around trauma and trauma recovery for autistic people (Peterson, et al., 2019) and how it can present and manifest for autistic people versus non-autistic people (Hume & Burgess, 2021; Fuld, 2018). Understanding masking as a trauma response and/or an outward presentation of trauma is still a very much neglected area in autism research (Pearson & Rose, 2021).
Impact: aspects of life experiences impacted by masking
Health and death
The researchers and testimonies by autistic bloggers are very much in consensus: masking causes mental health difficulties as a result of exhaustion (burnout) and loss of self-identity (Hull, et al., 2017; Cage & Troxell-Whitman, 2019; Rose, 2018a). They further emphasise that the stigma and stress of being in at least one minority group correlates with increased masking behaviours and therefore poorer mental health (Botha & Frost, 2018). The effort involved in masking causes high levels of stress and exhaustion, autistic burnout and mental health difficulties such as depression and lower levels of perceived autism acceptance (Hull, et al., 2017; Cage, Monaco & Newell, 2018; Chapman, 2020; Mantzalas, 2022; Pearson & Rose, 2021).
Research suggests the second most common reason for masking is “avoiding retaliation and bullying by others” (Cage & Trowell-Whitman, 2019). Masking is a survival strategy leading to exhaustion and is a continuous stress (Rose, 2018). Long term stress is known to be one of the causes of life-threatening illnesses such as diabetes and cancer (Salleh, 2008): autistic people have a higher-than-average prevalence of these diseases from childhood through to adulthood (Croen, et al., 2015), and are at higher risk of premature death (Smith DaWalt, Hong, Greenberg, & Mailick, 2019). We could infer that masking is a contributing factor due to elevated stress levels, given the associated health implications and shortened life expectancy that come along with being chronically stressed. Furthermore, the rates of suicide and suicide ideation within the autistic adult community are increased compared to non-autistic communities (Zahid & Upthegrove, 2017; Cassidy, Bradley, Robinson, Allison, McHugh, Baron-Cohen, 2014). Masking and unmet support needs are risk markers for suicidality in autism (Cassidy, et al., 2019). Lack of mainstream understanding of autism means that those around autistic people often do not realise they are masking any challenges they are experiencing, which results in no support being offered when required (Hull et al., 2017; Tierney, Burns, & Kilbey, 2016, Bargiela, Steward, & Mandy, 2016). The narrative of a child being ‘fine’ in school leads to so much trauma for both child and family (Autistic Parents UK, 2020) as outlined further below.
Identification & Parent Blame
It has been extensively reported that masking hinders identification of autism (Russo, 2018; Eaton, 2016). Masking can hinder the very first step in gaining identification (Eaton, 2016), with referrals to many national health services assessment pathways in the United Kingdom requiring ‘evidence’ from more than one setting (National Autistics Society, 2016). Therefore, many children are unable to access recognition or knowledge of their autism, (Corscadden & Casserly, 2021) until their stress levels become so high that they are no longer able to mask or suppress their difficulties and differences. Early access to assessment and formal identification is vital in preventing mental health difficulties (Zwanenberg, nd.). Many families are unable to pass the ‘gatekeepers’ to assessment (Eaton, 2016), as initial referrals have to come via schools, health visitors and GPs. If a child is masking and appears unaffected by autism in outside settings then referrals are refused (Eaton, 2016). Parents may voice concerns but are not believed or are deemed to be overreacting as the child seen outside of the safety of the home is often ‘perfect’ and ‘fine’ (Eaton, 2016). Beardon (2014, para. 2) writes, “Just because a child has the ability to mask their autism at school does not mean that they are not greatly impacted by their autism on a daily basis.” This causes high levels of distress for families and can cause trauma in an autistic child as professionals may advise parents to attend parenting classes (Eaton, 2016) and use a traditional style of discipline with a child in order to ‘manage the behaviour’.
Children often mask significantly in public (NAS, 2016) and the parents are blamed for the distress the child releases when back in the security of the home (BBC News, 2017). The stress I have seen this cause to families is unacceptable and I see children suffer as a result. With post-traumatic stress disorder (PTSD) being more prevalent in the autistic community due to increased risk of negative life experiences (Haruvi-Lamdan, Horesh, & Golan, 2018; Kerns, Newschaffer & Berkowitz, 2015) we could conclude that the absence of appropriate adjustments within education and mental health services can lead to PTSD. This has been reported by many autistic individuals who have been left traumatised by either their school experiences or when receiving treatments for mental health conditions (Poe 2019; Holliday-Willey, 1999; Scott & Westcott, 2019).
Self-Identity
The loss of self-identity can occur when individuals mask to the extent of taking on another person’s personality. Although this can make individuals very successful in the acting industry (e.g., Dan Akroyd) these skills can be misinterpreted as a personality disorder (Attwood, 2006, p. 5). A misdiagnosis of personality disorders was talked about by Attwood (2019) as being common for autistic adults and in particularly autistic females (Dell’Osso & Carpita2022). Furthermore, masking in terms of mimicking those around you to ‘fit in’ means never knowing or understanding your true self, with often devastating impact (Rose, 2018a). Anecdotally, I met many children who have lost their identity so much that they did not know what their true interests were, what their favourite colour was or what music they liked.
Self-identity and self-esteem are at risk when often identification of being autistic comes at a point where a child is in autistic burnout or mental health crisis which leads to the mask ‘falling off’. A child then misinterprets symptoms of a secondary mental health condition as autism: I meet many children who reject the autism identity and/or despise it. Heppel (2019, p. 21) who was identified late in life, described this as: “I have to separate the autism itself from the wounds that have been inflicted by people over the years – some well-meaning, some not – in response to the way my autism expresses itself.” Positive autistic self-identity and self-acceptance is needed for good mental health (Chapman, 2020; Cooper, Smith & Russell 2017).
History of masking research (See attached appendix)
Masking is a well-documented aspect of being autistic within the autism community (Rose, 2018a; Smitten, 2021; Holliday-Willey, 1999). However, academic research and non-autistic professionals haven’t always kept up (Sedgewick, Hull & Ellis, 2021): while autistic people were (and are) blogging, tweeting and writing about masking, some academics were stating that little is known about masking (Livingston, Shay, & Happé, 2019).
The initial interest in masking was based around the discrepancy in male to female ratios of autism prevalence and sought to understand this, drawing the conclusion that females are often missed and underdiagnosed due to them masking. Throughout this research non-binary and trans communities were neglected (e.g., Kreiser & White, 2014; Tierney, Burns & Kilbey, 2016; Cage & Troxell-Whitman, 2019). For some, the emphasis was placed on being successful in interacting in non-autistic environments (e.g. Dean, Harwood & Kasari, 2017; Cook, Ogden, & Winstone, 2018). Over time, recognition of the negative impact of masking developed, with links being made between ‘social compensation’ and suicide and/or poor mental health (e.g. Cassidy et al. 2020; Hull, L., Petrides, K.V., Allison, C. et al, 2017).
Throughout these studies, the narrative around masking was that it was a choice behaviour. Not until recently was there a focus on a need for safety from stigma and that masking was a trauma response to the environment being unsafe (e.g. Pearson and Rose, 2021; Perry, Mandy, Hull and Cage, 2021). As academia has started to become aware of autistic masking and the numbers of autistic people in research has increased, insights into masking in the academic world have progressed. Researchers such as Milton, Pearson, Rose, Chapman, have all played a vital part in increasing understanding on autistic masking.
Gaps in research with autistic children & young people
Despite this progress, academic research has heavily focused on autistic adults that mask. Given my experiences of many autistic children in burnout due to years of masking I know that it is vital this neglected area of research is explored. This research has significant implications for best practice in arenas that directly impact autistic children, specifically schools, mental health services and autism assessment pathways. Anecdotally, I meet and hear of many autistic children whose lives have been detrimentally impacted as the result of masking and who suffer with autistic burnout, suicidal ideation and poor mental health resulting in them being unable to take part in life and reach their true potential.
The knowledge and understanding of the term ‘masking’ that schools and other professionals have is limited in terms of its depth, which is due to how many children excel in their masking skills (Eaton, 2016; Planet Autism blog, 2017), therefore the high levels of ability and skill that often go into masking are grossly under-recognised in schools and assessment settings (Hull, et al., 2017). It is vital we focus more on the voices and experiences of autistic young people to inform practice and improve outcomes for them.
The earlier pieces of research into autistic children and masking tended to focus heavily on autistic girls and only considered the social camouflaging aspects of masking which allowed girls to ‘hide’ their social differences (Bauminger et al., 2008; Cook, Ogden & Winstone 2018; Dean, Harwood & Kasari 2017). In contrast, Chapman (2020) delved deeper, taking into account the voices of autistic young people with qualitative accounts. In this way Chapman was able to investigate relationships between masking, mental health and the development of the mask, as well as factors that enable a young person to be authentic, i.e. to not mask, an area particularly important for informing practice in supporting autistic young people. Chapman (2020) was able to establish themes within her results which heavily focused on environmental factors in masking. Previous experiences of bullying, criticism and rejection led to increased masking, as did being unfamiliar environments with unfamiliar people. This, alongside negative self-image, led to high levels of anxiety, with sensory and cognitive overload which were again then masked (Chapman, 2020). Chapman’s paper is crucial in informing our understanding and future directions of research into masking in autistic children due to its uniqueness: it was produced in collaboration with autistic young people, it delved deeper than social camouflaging and it focused on all genders.
Autistic young people have described masking as a result of increasing social pressures, expectations and stressors from the social and physical school environment (Tierney, Burns, & Kilbey, 2016). Many studies have failed to recognise the suppression of emotional, cognitive and sensory experiences which as an autistic adult cover a large aspect of my masking. Anecdotally, I also see this in the young people I support, whom often feel very overwhelmed yet will mask their natural reactions to this. Chapman’s (2020) co-researchers identified that masking led to a host of mental health difficulties including overwhelm, suicidal ideation and disconnection. By contrast, ‘authenticity’ was possible when young people were in environments that were accepting and supportive, and when they were with other neurodivergent people and engaging in their interests. Being authentic was linked with positive mental health outcomes such as positive self-image, feeling able to stim, and connectedness to others. This is linked to the double empathy problem (Milton, 2009) which is an important theory in relation to the practice of how we support autistic young people. A feeling of connectedness, of being understood and accepted, is vital for mental well-being. Chapman’s (2020) paper has been one of the most significant pieces of research into autistic masking with a focus on children and young people in that it encompasses their voices in a narrative that takes into account the complexities of masking.
The literature review has given recognition to what has been already considered within autistic masking research and where possible gaps lie. This has led me to consider: what is needed now?
Rationale: What is needed now?
How masking develops and impacts mental health in children and young people is still not fully understood (Chapman, 2020). We can take some elements from the research done with autistic adults, but these aren’t the daily experiences of autistic young people. Open, safe discussion with autistic young people, established by ensuring they are co-researchers and contributors and not simply ‘subjects’ of research done on them (Chown et al., 2017; Bertilsdotte et al., 2019), is essential for the deeper understanding required to increase understanding and ensure positive outcomes for autistic children and young people.
Based on the gaps in research around autistic children’s voices within academic research into masking and, anecdotally, the ignorance I see frequently from adults around the experiences of autistic children and masking, I developed research questions to gain deeper understanding and give the co-researchers a voice that will be validated and listened to.
Research Questions
1. What does masking mean to autistic children?
2. Why do autistic children mask?
I developed a set of questions to form a semi-structured interview. The questions were developed based on previous literature and what I believed to be the gaps. Given that research done into masking with autistic young people was limited the scope was enormous; however, I attempted to focus on these two research questions and develop interview questions that would align to those. Equally, too many questions may have been exhausting for both the co-researcher and myself. Co-researchers were giving autonomy over how they gave responses to each question and the questions were merely there as a guide. In fact, during the interviews the flow of conversation was rather organic, and we were finding that answers to them were naturally flowing without needing to directly answer. I often found myself saying “I think we have already covered this question, but feel free to say more.” This was positive for me from an ethics perspective as it meant I was led by the co-researcher and that they had control over their own narrative.
The interview questions can be found in the appendix and were considered by two autistic researchers (Dr Amy Pearson and Kieran Rose). Both were satisfied that my questions were both appropriate to the research questions. However, Dr Pearson did recommend a starter question: to ask the co-researcher about what language they use around the topic of masking, which I incorporated.
Methodology
Research Paradigm
As a researcher exploring the experiences of autistic people, I take an interpretivist approach as I believe truth is fluid between contexts, individuals and their experiences (Grinker, 2015). Taking an interpretivist approach emphasises the need to study people’s experiences and how they understand them. Masking is an instinctive response to our environments in order to make us feel safe, therefore masking is a phenomenon that each individual will experience differently (Rose, 2020). There are no absolute truths shared by all autistics with regards to how we experience the world, and therefore masking will be a subjective experience too. Although many autistic people experience masking, it is stated by some that it is not experienced by the whole of the community (Cage, Troxell-Whitman, 2019); neither is it unique to the autistic community (Rose, 2020). For example, black people mask in the form of ‘passing’, a term used for trying to seem ‘more white’ as a safety strategy. Furthermore, environments and our experiences will differ in terms of the extent of discrimination and ableism. Many autistic people have compounding factors, i.e. intersectionality between autism and disabilities, sexualities, genders, race, culture and so on, which will lead to varying masking experiences. It is thought that females are more likely to mask and so ‘evade’ autism identification (Russo, 2018), yet Rose & Smitten (2021) would argue that rather females experience higher level of discrimination due to societal expectations and views of females that lead to increased risk of trauma and masking. Equally, every autistic person has differing neurology (Ella, 2020) so how they experience and process any given environment will vary. All this taken together strongly suggests that an interpretivist approach is essential.
Ontology
“Ontology is concerned with the nature or essence of things” (Opie, 2004, p. 190). An ontological perspective refers to an individual’s beliefs about what reality is. In terms of social reality, is truth absolute, objectively observable and static? A realist would say yes. Relativists argue the opposite, that reality is just true for any given person at any given time and therefore constructed by the environment, context and experiences, and so there are multiple versions of ‘truth’. As Opie (2004) argues, realism is too simplistic a perspective when we consider the intersectionality of experiences of individuals. This simplistic position can be problematic in that it produces theories that result in inequality and discrimination (Opie, 2004). Within the field of autistic masking, the belief that only those assigned female at birth mask has led to discrimination of those outside of that group in terms of the recognition of needs.
I prescribe to a relativist perspective in that I believe each autistic person’s reality is related to their own personal experiences and environment including culture, sexuality, gender and ethnicity. Equally, autism is not a behavioural condition, but rather a difference in neurology. Considering the brain cannot be observed with the naked eye, it would be naive to believe that the full autistic experience is an objectively observable phenomenon. As an autistic researching autism, my reality is based on the experiences I have had as a previously masked, late identified autistic individual, a parent of autistic children and as a professional supporting autistic young people.
Epistemology
Epistemology is the “theory of knowledge” and concerns itself with what constitutes knowledge and the nature of knowledge (Opie, 2004). In the field of research, it asks how researchers will go about finding knowledge. Not having autistic people involved in research about us is an ethical and epistemological problem (Milton & Bracher, 2013). Based on my relativist ontological perspective, throughout this research I took a subjectivist/rationalist approach, with the intention on discovering multiple truths, rich in descriptors and in-depth experiences of a phenomenon (Opie, 2004).
In relation to autistic masking, the lived experience and therefore reality of autistic people is directly influenced by the external world. Beardon’s (2019 p.11) ‘golden equation’ describes this: autism + environment = outcome. The interaction between autism (neurology) and the external forces (environment) produces the reality of an autistic person masking. Equally no two autistic persons’ experiences of the same environment will be the same due to our differing neurology: our sensory profiles, previous experiences, intersectionality as discussed above. This incorporates not only our ‘autism’ and the environment but also previous experiences within our environments which may have caused trauma.
Methodology
There are two basic opposing methodological branches: positivism and interpretivism.
Milton (2014) states: ‘It is the voices and claims of autistic people regarding their own expertise in knowledge production concerning autism that is most recent in the debate” in the field of autism research. Milton (2014) argues that autistic voices are often blocked out of research concerning autism.
I carried out this research with a relativist and subjectivist perspective; therefore, my methodological approach takes that of an interpretivist. As an interpretivist I collaboratively engaged with co-researchers in order to develop understanding of the phenomenon which is autistic masking and to produce multiple truths based on individual experiences.
In the past there was some ‘praise’ for positivism as that it replaced some of the more occult practices and approaches; however, positivism’s clear preference for taking on a very physical cause and effect, behavioural perspective led to beliefs that even differences seen across cultures and times could be falsely put down to common causative explanations (Hammersely, 2013). In relation to autism research, positivist approaches have often been linked to ‘cures’ or ‘treatments’ for autism. The implications of this methodological approach to autism have been, at best, inappropriate and, at worst, abusive. For example, applied behaviour analysis (ABA) focuses on cause-and-effect philosophies and ABA is known to cause significant trauma in autistic people (Kupferstein, 2018, McGill & Robinson, 2020).
I approached this research with a phenomenological methodological perspective due to my belief that we cannot always find definitive answers or truths as reality can be complex, with many intertwined variables. Phenomenology focuses on the experiences of humans (Denscombe, 1998). This approach meant investigating, in-depth, autistic masking with a small cohort of co-researchers. I looked beneath the outward appearance of life with high levels of curiosity allowing us to see its hidden nature (Cohen, Mania & Morrison, 2017).
The features of phenomenology focus on the presence of a consciousness that is active and used to gain knowledge through reflection (Cohen, Mania & Morrison, 2017). In terms of investigating autistic masking in children, there are some challenges around this. Masking is a predominantly subconscious trauma response (Rose, 2018) and reflection is not always possible until you have an understanding of masking as a phenomenon and how that relates to individual experiences. Many autistic adults have been through this reflective process once they identify as autistic; this reflection is less common for children due to a lack of knowledge within institutions that support children and therefore children themselves are not hearing or being informed about what masking is and how it is impacting them. This in itself makes this research so vital, and also offers some explanation as to why it hasn’t been researched extensively before. One criticism of phenomenology is that due to its emphasis on true lived experience it simply just offers descriptions (Denscombe, 1998); however, my research has given autistic children a voice and empowered them through offering a safe space to talk about their experiences. I believe that the insight gathered through descriptions within the safe space has the power to change perspectives and practice. As stated by Milton & Sims (2016) an interpretivist approach supports the exploration of potential contributory factors to the lived experience which inform provision for autistic people. I also believe the safe space being offered to have these conversations will benefit the participants. Having their voice heard, validated and empathised with is something that many autistic children will not have experienced.
Method
This is a participatory piece of research which aimed to investigate experiences of autistic masking. Participatory research instils that both researcher and this affected by the topic in question work collaboratively as a partnership (Jivraj et al.,2014). Therefore, I use the term co-researchers as opposed to participants. I used semi-structured interviews with autistic young people as my co-researchers.
In terms of autistic masking, my aim was to understand experiences of autistic masking in children in greater detail. As stated by Ellis (2004) in an ethnological study, interpretivist approaches “offer an opportunity for young autistic individuals to have a voice. Autism research without the autistic voice is ethically problematic (Chown et al., 2017) and can lead to inaccurate and harmful narratives. In relation to masking, it is simply not a phenomenon that cannot be observed or commented on from the outside as it’s a suppression of feelings, thoughts and being (Pearson & Rose, 2021). Therefore, autistic voices need to be explored and given a platform.
I collaborated with four autistic young people to produce this research. They were aged between 12-16 years old. Two identified as non-binary and two identified as male. This is significant in that an alarming amount of previous research into masking has focused only on those who identify as female and were assigned female at birth (Rose 2021a), so much that masking has even been deemed by some researchers as part of a ‘female autism’ (e.g., Hull, Petrides & Mandy, 2020). This is not only victim blaming (Rose, 2021a) but has also led to discrimination of autistic people who don’t identify as female.
Semi-structured questions were used as great richness can be found in allowing autistic children’s voices to be heard in a non-dominating way, enabling the child to have control over the direction of the conversation, and because they offer an effective way of exploring complex phenomena (Denscombe, 1998). Although unstructured interviews may have also achieved these aims, it is my experience from working with autistic young people that they feel safer with some feeling of structure and direction of conversation, rather than the pressure of completely open conversation with an unfamiliar person. However, the interviews with be co-researcher led to ensure they feel listened to and have autonomy over their own narrative. This is vital in research, given that often autistic people have been involved in research in only very tokenistic ways (Milton & Bracher, 2013).
The interviews enabled me to access privileged information, which is defined as information held by those that experience a given phenomenon (Denscombe, 1998). Autistic children who do mask or have masked are the ‘key players’ who hold this information.
This section has outlined the studies methodology, including specific methods. I will now go on to discuss the ethical considerations needed for this research.
Ethics
My motivation for expanding knowledge on masking is in itself an ethical one, as I see many children harmed due to lack of understanding from the adults around them. The research meets the emancipatory framework set out by Chown et al. (2017). Being an autistic researcher, it was essential to me that the research was predominantly our (autistic) voices. It emphasises the need for changes in practice, in line with the social model of disability (Oliver, 1992) and, most importantly, it will influence practice in a way that improves the day-to-day lives of the autistic community and in particular autistic children and young people.
Current research around autistic masking in children focuses on ‘fitting in’ with peers and talks about masking being a choice presentation (Cook, Ogden & Winstone, 2018), instead of masking being a trauma response (Rose & Smitten, 2021). Regarding this research aiming to do some good (Sheffield Hallam Ethics Policy, 2017), I hope that raising the voices of autistic young people will offer much needed insight into their experiences of masking and in turn influence attitudes and practice. The marginalisation of autistic children, particularly in education, is ongoing due to the trauma schools cause for many autistic children (Autistic UK, 2020), and children’s voices in terms of the lived experience is vital for understanding. In my experience, autistic children who mask are deemed to be ‘manipulative’ or their parents are deemed to be at fault for their child’s difficulties, and they are often distressed and melting down at home as a result of built up and supressed stress throughout the day.
Co-researchers
My co-researchers were children aged 12-16 and autistic. Additionally, they were all or had been maskers. Therefore, they were deemed vulnerable. Their safety and well-being were of the upmost importance to me. Various steps as outlined below were taken to ensure their experience of taking part in research was a positive one. It was wonderful to be contacted by two parents after the interviews who shared that their child had spoken really positively about the time we spent together, with one co-researcher saying to their parent, ‘Finally, someone who really gets me!’
Interviews
Four autistic young people were interviewed using a semi-structured interview approach. They were recruited via an advert placed on my work Facebook platform. I originally aimed to interview up to six young people; however, due to time restraints and the time needed to transcribe and analyse data, four young people was more practical and manageable. It was important to me that I had the time available to fully take in and analyse the co-researchers’ responses thoroughly.
During the interviews I took several steps to ensure the process does not cause any distress to the child and that they felt safe enough to not mask. It was also important to ensure that the process was tailored to meet individual differences (Cascio, Weiss, Racine, & the Autism Research Ethics Task Force, 2020). This was achieved by:
• Co-researchers encouraged to fiddle and move to accommodate sensory and processing differences. I had with me a bag of sensory toys such as stress balls, stretchy toys, fidget spinners and putty to play with myself to show that this is accepted.
• The co-researchers were interviewed via Zoom. The child’s format preferences were respected e.g. the camera being on or off and questions can be answered verbally or via text. Discussions around accessibility, communication choices and preferences took place at the stage where consent was given via a one-page profile asking about preferred communication style (e.g. mouth words, text box), how they communicate distress (e.g. going quiet, head down, moving more, stimming more) and asking about any potential triggers/subjects they don’t want to talk about. Each co-researcher was asked to complete this alongside their parent/carer. Although it could be argued that the richness of data could be impacted by having video turned off or communicating via type, this was outweighed by the ethical importance of the co-researcher being comfortable and feeling safe. Furthermore, if the co-researchers did not feel safe, they were likely to mask which would impact the validity and reliability of data gained.
• Children were able to choose to have parents/carers/a trusted adult present with them during interviews.
• The child was able to opt to take a break or leave the interview at any point. How they communicated their desire for this was agreed beforehand via the one-page profile; however, co-researchers were reminded that they could simply leave the room/online platforms at any point without communicating this in any other way.
• The child was reminded throughout that any questions they do not want to answer can be left with no consequences.
• Interviewer effect can refer to a participant feeling like they have to engage in the process or can’t say no. This is a particularly important consideration given the co-researchers are/were maskers and would have fawned and ‘people pleased’ in socially demanding situations in the past instinctively. As part of the one-page profile, I asked co-researchers and their parents how they communicate distress (e.g., increased stims, smiling, looking down etc) so I could always be vigilant to any possible stress. I also have the advantage of being autistic myself: the double empathy problem (Milton, 2012) refers to a mismatch of communication styles and hence misinterpretation of each other by autistic and non-autistic communities. Being autistic means that when interviewing autistic children, the risk of anything being ‘lost in translation’ was reduced as I was more likely to recognise any distress.
The questions for the semi-structured questionnaires were run past two other autistic academics who also have an interest in and experience of researching autistic masking, Kieran Rose and Dr Amy Pearson. This was to ensure that I was not biased towards any particular outcome and that my questions were not ambiguous to the co-researchers.
Interviews were recorded via Zoom recording abilities which each co-researcher had given consent for.
Consent
Before any prospective co-researchers were provided with the research information and asked for consent, a parent/carer had to give consent. Autistic children fall under the category of “special needs” and hence due to possible “limited emotional and/or intellectual ability” parental consent is mandatory (Mantt & Licari, 2018).
Right to withdraw
Co-researchers had the right to withdraw at any point during the data collection. As discussed above, the process of this and how this can happen was agreed. It was pivotal that participants and their parents were explicitly reassured this would not impact any further support or involvement from me in my usual role with them.
Confidentiality
Co-researchers were asked to choose a pseudonym based on an interest or favoured thing to give a sense of ownership. The need to break confidentiality based on safeguarding concerns was explained to all co-researchers.
Debrief
A debrief was provided to ensure that the co-researchers were supported following their participation, including an offer to meet with me again following data analysis to learn and approve what we have discovered and learnt from the research (Tesch, 1977). The debrief gave an opportunity for participants to learn more about what I aim to achieve by having their voices heard, as well as providing them with additional information and resources. I expressed that I hoped by sharing their voices has made them feel part of positive change; they were thanked for this in the debrief, as well as being reminded about their right to withdraw. I provided them with further links of support and the opportunity to ask me any questions or voice any concerns they had. This offer was also extended to parents of participants.
Researcher safety
Being a late-identified autistic person it is important that throughout the research process I was protected from distress or harm. Many of those late diagnosed within the autistic community have had a lifetime of subconscious masking and have started to undergo a process of understanding and unmasking our authentic self. This has been very much true for me and although the self-discovery process has been positive on so many levels it has also uncovered elements of trauma I have experienced. Therefore, listening to my co-researchers talking about their own masking experiences could potentially have been triggering for me and to ensure I remained well myself I accessed fortnightly supervision/counselling with the professional I see as part of my role as an autism specialist.
Reader safety
A trigger warning of ‘autistic trauma’ ‘autistic masking’ and ‘autistic suffering’ will be given when this research is shared, to ensure that any reader is aware of the content being potentially a trigger for previous or current trauma they may or a close friend/family member maybe carrying.
All ethically considerations were carefully implemented allowing for each co-researcher’s individual needs and requests throughout the data collection process. Next, I will talk through how dada analysis took place.
Data analysis
The data collected was subjected to a thematic analysis (Braun & Clarke, 2006). The six stages of analysis carried out, as proposed by Braun and Clarke, are detailed below. However, as asserted by Braun and Clarke (Braun, Clarke & Hayfield, 2019), these six stages were never supposed to be ‘law’ to be followed like ‘gospel’ but rather a starting point to explore and analyse data; therefore, the stages were followed with this in mind.
- Familiarisation with data: I carried out all interviews and so the data was already familiar to me. Each interview was then transcribed. I read each transcript twice with a gap of three days in between to support my internal processing of the data.
- Generating codes: Open coding was carried out, as I did not have pre-prescribed codes, but rather they developed organically as I went through the data highlighting sections and looking for patterns relating to both my research and interview questions. Post-it notes of codes were generated. A full description of the inner processes this took is hard to decipher as my autistic neurology means I naturally see patterns and form links, particularly within information regarding my passion (i.e. the lived autistic experience). As advised by Connolly (2022) I printed off all data and spent time highlighting, cutting out pieces and quotes enabling me to physically feel and be with the data, which I believe supported my processing and organisation of the data into codes and then themes.
- Searching for themes: the codes were laid out and looked at in a broader sense to start the development of themes. Coded data extracts were assigned to the various initial themes (coined candidate themes by Braun & Clarke, 2006). This was done by me considering my research question and interview questions and considering the responses to these. Patterns naturally became clear as did the variety of responses which formed the themes.
- Reviewing themes: themes were then analysed further, with decisions made on which themes naturally amalgamated and were linked.
- Defining and naming themes: all themes were refined and named according to their description.
- Producing the report.
Themes will now be outlined in tables in the next section: ‘Results’.
Results
The data was analysed using thematic analysis (Braun & Clarke, 2006).
Various forms of masking were identified falling into 3 themes:
- Suppression of authentic outward self
- Suppression of internal self (emotions/sensations)
- Exaggerated or made-up character version of self.
All of these were linked to the co-researcher needing to present themselves as a more ‘acceptable’ version of themselves.
| Theme | Example Quotations |
| Suppression of authentic outward self | “I’m the one that adapts” “I would copy people so that I could make friends” “I had been in burnout for a while, like school was just me showing up to leave” “Act like everybody else and be like everybody else” “It’s just changing behaviours to suit the situation” |
| Suppressing communication of internal self | “I’m thinking about something completely different but I’ve got to pretend I’m not” “Well, it doesn’t always make me feel like it but I’ll just act like it” “I hide my feelings, when I pretend everything’s okay when it’s not. I kind of be how they want me to be, how they want me to feel, instead of how I am actually feeling. So obviously people want to see you look happy, so I will look happy and smile because that’s what you do when you’re happy, but I won’t actually feel happy” “I feel like people would be disappointed in me if I am sad” “I’m always thinking, what should I be saying. What should I be doing”? “Everyone would be like, are you okay? And sometimes I don’t even know what’s wrong so it’s easier just to avoid it” “When you masking you pretend to be happy” |
| Being an exaggerated or made-up version of self | “I always found myself switching between characters when I was at school” “It’s like a video game I guess” “It’s just an exaggerated or quietened down version of me” |
From further interview questions these 6 main themes were discovered.
- Masking is not a choice
- But masking develops to avoid negative responses from others
- Masking is most likely to occur in school
- Masking leads to negative consequences to self
- Autistic children need to be given access to masking information
- Adults in schools need to listen, trust and have empathy towards autistic students.
| Theme | Direct quotes |
| Masking is not a choice | “I’d been doing it for years without myself realising” “Instinctive, not like a conscious thought….it just happens” “It just happens” “I don’t really control it” “When people say, “you don’t have to mask” it’s quite hard and they’re like, “you don’t have to mask in front of me, you can tell me how you feel!” And I’m like, “It’s not really like that.” “Its second nature” |
| Masking develops to avoid negative responses from others | “So, people wouldn’t think I was weird” “I wouldn’t make any friends” “it’s all about what other people think” “Not wanting to make myself look stupid” “I think that’s kind of a learnt behaviour” |
| Masking is most likely to occur in school. When asked “Where do you or are mostly likely to mask?” | “I don’t tend to mask much at home, but when I’m at school, like always” “Like the science subjects, as much as I enjoy some of them, I end up putting m lot more effort into masking than actually doing the work” |
| Masking leads to negative consequences to self | “I made friends that I didn’t really like…… I masked and copied their personality a lot then realised I don’t like them” “Like I could flip at any minute” (once home from school) “I became burnt out” ‘It’s tiring, really tiring” “It really overloads my brain” “It’s kind of like ignoring your emotions” |
| Autistic children need to be given access to masking information | “My mum brought me home this book, and it said like… kind of explaining it, and I was like, trying to understand some of the things it said and I was like, “Oh yeah, I’ve doing this for years without realising!” “I think it were in a group my mum took me to that kind of told me what it was and stuff” “I couldn’t quite work out what it meant because it was a lot of forums that came up – Reddit came up quite a bit when I was googling, so that’s how I found out what it was meant to be, so I went “Oh yeah, I do that” |
| Adults in schools need to listen, trust and have empathy towards autistic students | “Sometimes they don’t have to understand every part of everything behind it, because sometimes we don’t but we usually know what the next step is, if that makes sense. Sometimes they can be – I don’t want to say they are ‘reluctant’ to give support because that would be completely the wrong word, they obviously want to support but they don’t have the same ideas of support that I kind of – I guess as an example of support at my old school that I kind of want because I think it would help me – I can’t explain why I need it but I do know that I definitely… Trust is what I’d like schools to do more” “Sometimes they think they do help, but it’s really not” |
Results debrief
All four co-researchers were offered the opportunity to meet with me again following the data analysis. At the time of write-up, two had taken me up on the offer. Both co-researchers were satisfied that I had accurately portrayed their experiences. In particular, one co-researcher enjoyed seeing their direct quotations written in. Which I feel is a perfect portrayal that their words have been heard, accepted and validated.
This section has shown the co-researchers responses within their themes. I will now go on to discuss these more in-depth and how they support and increase our understanding of autistic masking in young people.
Discussion & Recommendations
Due to word restraints, I will be focusing on four themes that feel are most significant in terms of the impact on future practice and research. As stated by Pearson & Rose (2021), masking is complex, with many aspects we don’t yet understand, so it feels appropriate to focus on some lesser talked about discoveries.
Suppression of communication of internal self
The narrative and research around autistic masking with both adults and children has mainly focused on changing outward behaviours (e.g. Bauminger, 2008; Cage & Troxell-Whitman, 2019). However, two of my co-researchers discussed the suppression of their true internal state (i.e. emotions) to please and protect the emotions of others, e.g. Crystal stated: “I feel like people will be disappointed in me if I am sad” and
Basically, for me it’s when I hide my feelings, when I pretend everything’s okay when it’s not. I kind of be how they want me to be, how they want me to feel, instead of how I am actually feeling. (Crystal)
The suppression of emotions, and particularly emotional distress, is linked to suicide (Kaplow, Gipson, Horwitz, Burch, & King, 2014), as is autistic masking (Cassidy, 2020), therefore it would be rational to consider emotional suppression as a form of masking that needs to be recognised and understood. Further ethnographical research into this is needed to limit the risk of significant mental health issues and suicide in autistic children and young people. The very much unexpected link found here is that emotional suppression could be closely linked to hyper-empathy, a phenomenon talked about extensively by the autistic community (Smitten, 2022; Weatherford, 2021) and shown in research by Meng et al. (2021). This is an important link and needs to be explored further as, firstly, the myth that autistic people do not have empathy is immensely damaging (Armstrong, 2015), and secondly, overwhelm and distress caused by sensory experiences is so often invalidated by the non-autistic community (Rose, 2018a) and could possibly be leading to trauma in the form of masking.
Masking develops to avoid negative responses from others
Only recently with research such as Pearson and Rose (2021) and Perry, Mandy, Hull and Cage (2021) has there been a focus on stigma and the development of masking. The co-researchers’ voices throughout the interviews are very much congruent with this more progressive understanding of autistic masking e.g., Smudge shared that, “it’s all about what everyone else thinks.” Tangi, through our conversation, was able to unpick that their masking was partly linked to proving that they were capable and challenging the deficit narrative that has surrounded autism:
Tangi: “In social situations I get to be seen as what I want to be seen as instead of what a label of autism wants me to be seen as. But also, it really overloads my brain.”
Jodie: “So in some ways you’re not necessarily masking your autistic self, but you’re – I might have this wrong, so just say if I’m wrong, but it’s almost like you’re working hard to myth bust around what being autistic is.”
Tangi: “I guess, yeah. I didn’t think about it like that, yeah.”
Jodie: “You’ve almost got, you talk a lot about the label and not wanting to live up to the label but the label – maybe that’s about what people think the label is.”
Tangi: “Yeah. I think it’s definitely a mix of both. I mean, it would be mainly all myth busting.”
This is an incredible insight into not only the complexities of masking but also the link to stigma in terms of how and why masking develops and it is congruent with the findings of progressive and autistic researchers such as Botha, Dibb and Frost (2022). The diagnostic process alone is steeped in problematic stigma and deficit narratives (Rose, 2021) and the language used within society and on the internet is dehumanizing (Beardon, 2022), particularly with the insistence of the term ‘autistic spectrum disorder’ on medical diagnosis, leaving autistic children and young people with the impression that there is something ‘wrong’ with them and that they somehow have deficits that they need to compensate for or hide. As stated by Vivanti, ‘Far from being mere semantics, this distinction has practical implications, as the words that we use to describe individuals with an autism diagnosis influence societal perceptions, public policy, clinical practice, and research directions’ (2020, p. 601). With this in mind, masking can be seen as an instinctive defence mechanism, protecting oneself from the deficit model narrative and stigma surrounding autism and therefore masking is a result of environmental factors. As stated by Beardon (2019, p. 11), ‘autism + environment = outcome’, therefore we need to consider changes in the environment in order to support the mental health of autistic children and prevent trauma.
Masking is most likely to occur in school
School is one of the contributing factors to children’s decline in wellbeing (The Children’s Society, 2021) and with autistic children being described as ‘the canaries in the mine’ (Billington, 2019), school can be a very problematic environment for autistic students from a social and physical perspective (Leatherhead, 2020). Furthermore, a lack of staff training and understanding compounds the negative impact of the mental health and academic progress of autistic students (Leatherhead, 2020). Many people have written and blogged around the subject of school being a place where masking occurs (Beardon, 2014; Eaton, 2016; Rose, 2021) yet research hasn’t focused on school as being a place where masks can develop and become ingrained.
All of the four co-researchers answered ‘school’ when asked where they are most likely to mask. If we consider this from the perspective of the stigma associated with autism, it could be concluded that school environments are not inclusive and not providing safe access to learning for autistic students. Anecdotally, for almost every child I meet in my professional role as an autism specialist/mentor/advocate, school is the source of trauma and associated masking, specifically the school environment with its many social, sensory and cognitive demands. This is congruent with Moyse (2021) in her research titled ‘Missing: the autistic girls absent from mainstream secondary schools’. Moyse attested that these students weren’t rejecting education or learning but rather the challenges of the school environment were having a negative impact on their mental health. It could be concluded that there is a direct link to the findings of Billington (2019) who found that autistic children were at increased risk of exclusion and bullying: if autistic children are their authentic selves and express their true emotions in school, they put themselves at risk. This isn’t so much about ‘school blame’ but more about accepting that neuro-normative expectations are discriminatory against and harmful for autistic children. “One doesn’t have to operate with great malice to do great harm. The absence of empathy and understanding are sufficient” (Blow, 2015 p. unknown).
Autistic children and young people need to be given access to masking information
I recently received an email from a mother of a 7-year-old girl who had read the book written by my daughter and myself (The Secret Life of Rose: Inside an Autistic Head). The mother explained that since reading the book her daughter not only now understood her masking but was able to use this knowledge to better advocate for herself. This 7-year-old was able to recognise and sometimes express that she was in fact masking. In turn this had led to her having a much more positive experience of school and meant her needs were now being accepted and met. In terms of this research, a prerequisite of taking part was that the co-researchers had some understanding and insight into their own masking. All participants had discovered they masked by discovering that masking exists! One from a book, another via a group, one via their own research. Sadly, for three of the four co-researchers they had hit autistic burnout prior to knowing about masking. Knowledge is power. I advocate for autistic children and young people to be given support around self-understanding, self-acceptance and self-advocacy to protect their mental health. Autistic masking is part of the autistic experience and so children having better knowledge of it and how it impacts them can only lead to better outcomes.
Adults need to listen, trust and have empathy towards autistic children and young people
Teacher training and understanding of autistic experience is vital for inclusivity (Falkmer, Parsons and Granlund, 2012; Leatherhead, 2020), so co-researchers were asked what they wanted adults to know about masking. Two talked to me about what they wanted adults in school in particular to know. Their responses were based around three themes: communication, trust and empathy. They discussed the need for adults to communicate with them about the support they need and how this isn’t happening for them currently. This is congruent with the co-researchers Moyse (2021) collaborated with, who also expressed that their voices were missing from decisions about what they needed in school. My co-researcher Crystal stated:
They need to like; they have to ask the person. It’s okay thinking they are doing good stuff, but having to take a moment to say ‘do you want this?’ because have you asked the person if they want this, probably not, you’ve just done it because you think it’s helpful. (Crystal)
Trust was interlinked with the need for communication. Tangi articulately shared that they know what they need but aren’t always able to explain why, so the adults around them need to trust their own insight into their own needs: “I can’t explain why I need it but I do know that I definitely [need it] …. Trust is what I’d like schools to do more”.
Empathy was discussed by Crystal, who experienced a lack of empathy from adults at school around their lived experiences. Crystal was exposed to invalidation. While talking with Crystal, we both couldn’t help but smirk at the irony of the words. The medical model of autism deems us to have deficits in both communication and empathy and here my co-researchers are disclosing a lack of it from the non-autistic community. Like many previous autistic writers have talked about in the past (Poe, 2019), Crystal articulated how some ‘support’ that they had been subjected to actually caused more distress to them than good:
Sometimes they think they do help, but it’s really not. They need to understand it from the viewpoint of an autistic person. Put themselves in our shoes and see how we see the world and stuff. And then think how they would feel about that. (Crystal)
The current education secretary Nadhim Zahawi has stated that SEND children have lost confidence in the support system (BBC News, 2022) and I feel that my co-researchers have articulated some of the reasons why.
This research has given us the opportunity to hear autistic young people’s experiences of masking. They have shared with us that masking is not a choice, but is something that happens to them as a result of needing to be safe from people’s ill-informed misjudgements and feelings towards them and about them. They have expressed that for them school is a place where their masking occurs most frequently, and that this can look like a suppression of their autistic personality or suppression of their authentic emotions. They have also shared that they will attempt to offer a version of themselves that is deemed ‘better’ or more accepted by non-autistic people. They have been able to articulate that although this puts them in a better light to onlookers, it has negative impacts on the self, including autistic burnout, exhaustion, and ending up being in social circles with people you don’t actually want to be with or don’t feel you can be yourself with. In order for things to improve for autistic young people they would like others to have understanding, empathy and trust in them. They want to be not only listened to but for them to have their experiences accepted and trusted in.
Limitations & Conclusions
This research was about giving autistic young people a voice. My co-researchers were immensely brave to share with me their experiences and their trauma. Because masking is instinctive to maintain self, one’s insight into it varies. Every co-researcher spoke of the ‘light bulb’ moment when they discovered that what they are experiencing is actually a thing, that they needed the label and information of masking to recognise their own experiences. Discussion with children and young people from my professional work about the discrepancies between how they feel and present in school and how that compares to how differently they present the same emotions at home show a level of understanding but often also confusion about why this happens. Many are unaware of the discrimination they face in school as an autistic student which shows up in the overrepresentation of autistic children within exclusion statistics (Billington, 2019). Autistic children and their natural ways of being are unaccepted and discriminated against at school, which in turn will cause them to mask or externalise their distress (Billington, 2019).
Equally there are many young people whom I support who I would not have ethically been able to invite to be part of this research because masking has caused such significant trauma that they are in significant burnout and talking of their experiences would have been too triggering. The co-researchers who did take part are still on a journey, a journey of self-discovery and healing, but would be deemed the ‘survivors’. Many others are not yet able to share their voice, and many for whom the world had caused so much harm will never be able to. This makes research into masking ethically and morally difficult but more so immensely vital.
Masking is so complex and can be so ingrained that many of us are still very much at the beginning of understanding what it means to us and the motivators behind our mask. I still believe that so much more is to be explored both for myself and my co-researchers in terms of our own relationships with our masks. Unravelling who we are is a long journey, and if we were to follow the co-researchers on their journeys, I am sure we would discover so much more than what is in their consciousness now. However, we have to start somewhere and the journey of unmasking, unravelling and self-discovery can only occur if the environment (particularly the people in it) is aware and accepting of autistic masking and autistic experiences.
Finally, I was limited to those that are identified or self-identify as autistic. Masking very much hinders the process of both formal identification (medical diagnosis) and self-identification, due to masking being a source of loss of self (Miller, Rees & Pearson,2021). Therefore, many autistics will not be recognised or recognise their own autistic identity due to masking. This is compounded by masking being an unconscious way of being for many (Pearson & Rose, 2021). We cannot know what we don’t know! Therefore, many people deeply impacted by autistic masking are unable to be part of research.
My co-researchers and myself set out to explore what masking meant to them. I wanted to delve into the questions, ‘What does masking mean to autistic children? And why do autistic children mask?’ in order to understand the autistic child’s experience, and to use this understanding to improve outcomes for them. My co-researchers were incredible in being able to articulate the stigma and feeling of unsafeness they have and continue to experience. They talked of how they are tired, burnt out and haven’t been consulted with or trusted. Until the non-autistic world accepts autistic voices and autistic children are safe to be authentically themselves, lives and childhoods will continue to be lost. The autistic community are all too aware of the possible negative repercussions of being authentic and unmasked, with many risking arrest, sectioning under the mental health act, abuse and more, due to the non-autistic world misinterpreting autistic expression. “The greatest act of courage is to be and to own all of who you are – without apology, without excuses, without masks to cover the truth of who you are” (Ford, 2012 p. 13), but currently it is not safe to do so, as authenticity is a privilege not a given.
A final word or two
Throughout the past three years of my studies, I have come to discover a lot about myself. I have been on my own journey of self-discovery and unmasking. My own children and the children I work with have taught me as much about myself as I have taught them. We self-discover through sharing experiences. This is truly epistemological in its approach.
This MA hasn’t been about me as an individual gaining status in the neurotypical world. This has been about advocating for autistic children; this has been about supporting those who are continuously not listened to and not validated. I have been driven by my own trauma surrounding this. I have been professionally gaslit in ‘professionals’ meeting when advocating for children. Those with more letters after their names not listening or trusting the knowledge, I have around autistic experience and the child in question. I have done this to be believed because being autistic so often means we have to work so much harder to be heard and deemed competent.
Jumping through the hoops of academia has been immensely difficult. Presenting my knowledge and the voices of autistic young people in a way that will be recognised and trusted, while continuing to fight for and with them within my day-to-day role, has been incredibly draining. Not because of my lack of ability, insight or knowledge but because of how ableist academia is. I am autistic and ADHD: putting pen to paper, focusing on grammatical details, using appropriate language and referencing has been the challenge here. Yet none of those details change the validity and importance of what my co-researchers and myself need the world to hear. This needs to be considered in order for academia to be truly inclusive and epistemological. I am here for the young people I serve and the only repayment of what I have put into this that I want is to see change and to see autistic children’s lives protected from trauma.
Jodie Smitten BSc(Hons) Psy. PGCert & MA Autism
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1 Response to "Masking in Autistic Children: The Childs Voice"
Amazing article, thanks so much for sharing your valuable research!