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A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice

Authors:

Abstract

Research into autistic masking has recently started to gain traction, showing that masking is related to late/missed diagnosis, and a selection of negative outcomes including burnout and suicidality in autistic people. Though masking is described as a social strategy, the application of social theory to understanding masking is sparse. In this analysis we review literature so far in light of the historical deficit focussed narrative of autism and make suggestions for how we can use social psychological theory to better understand what masking is. We discuss the role of stigma on identity expression, and how social theory can be applied to understanding which aspects of contextual identity shifts are harmful to autistic people. We also discuss issues around a gendered narrative of masking, including the exclusion of non-binary autistic people, and those whose autistic characteristics do not fit within a binary narrative. Finally, we make suggestions for future research, including the use of a multidimensional conceptualisation of masking that takes into account the role of internal and external aspects of masking, in interaction with the role of time as a developmental factor.
Title: A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the
Illusion of Choice
Running Title: Autistic Masking: A Conceptual Analysis
Amy Pearson¹ and Kieran Rose²
¹School of Psychology, Faculty of Health and Wellbeing, University of Sunderland, Sunderland, UK.
²The Autistic Advocate and Infinite Autism, County Durham, UK
Correspondence:
Amy Pearson
amy.pearson@sunderland.ac.uk
School of Psychology
Faculty of Health Sciences and Wellbeing
University of Sunderland
Shackleton House
City Campus
Sunderland
SR1 3SD
Tel: 0191 515 2279
@drAmyPearson
ORCID: 0000-0001-7089-6103
Keywords: Autism, Camouflaging, Masking
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Authorship Confirmation Statement
AP and KR conceptualised and wrote this manuscript. Both authors have reviewed and approved this
manuscript submission. It has been submitted solely to Autism in Adulthood.
Author Disclosure Statement
None of the authors have competing financial conflicts of interest.
Funding Information
Neither author received funding for this manuscript
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Why is this topic important?
Autistic masking is a complicated topic. We currently think that masking includes things like making eye
contact even if it makes you feel uncomfortable, or not talking about your interests too much for fear of
being labelled ‘weird’. There is a lot about masking that we don’t know yet, but it is important to
understand masking as we think that it might have a negative effect on autistic people.
What was the purpose of this article?
The purpose of this article was to look at current explanations of masking, and try to figure out what is
missing.
What do the authors conclude?
We conclude that work on masking needs to think about autistic people in a different way. Autistic people
grow up in a social world and experience a lot of negative views about autism and autistic people. We
argue that we need to understand how this social world and the trauma that can come from being part of it
contributes towards masking. We also argue against the idea that masking is a ‘female’ thing that occurs
as a result of there being a 'female specific' subtype of autism, because this might make it harder for some
people to get a diagnosis (e.g. non-binary people, and men and women who do not fit with any of the
current criteria). Instead we argue that people need to recognise that autism doesn’t look like one ‘type’ of
person, and try to separate ideas about masking from ideas about a person not fitting a stereotype.
What do the authors recommend for future research on this topic?
Though masking is called a ‘social strategy’, there has not been a lot of social theory applied to masking
research. We recommend that researchers use theories about how people try to fit in, and theories about
how people exclude and hurt people who are different. This can help us to understand why autistic people
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mask. We also stress the need to understand that masking is not necessarily a choice, and that there are
many unconscious aspects. We argue that researchers should try to find out when masking starts to
happen (for example, in childhood) and what makes people feel like they need to keep up the mask. We
also recommend lots more research into autistic identity, and how different parts of identity (including
things like gender, race, co-occurring conditions) might mean that someone has to mask more (or less), or
in different ways.
How will this analysis help autistic adults now and in the future?
We hope that this analysis will help researchers to understand that some aspects of masking might be
unique to autistic people, but some aspects might be like other kinds of ‘pretending to be normal’ that
other people who are socially excluded use to try and fit in. We hope that our suggestions can help to
improve our understanding of masking, and lead to research that makes life better for autistic people.
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Abstract
Autistic masking is an emerging research area which focuses on understanding the conscious or
unconscious suppression of natural autistic responses and adoption of alternatives across a range of
domains. It is suggested that masking may relate to negative outcomes for autistic people, including
late/missed diagnosis, mental health issues, burnout and suicidality. This makes it essential to understand
what masking is, and why it occurs. In this conceptual analysis we suggest that masking is an
unsurprising response to the deficit narrative and accompanying stigma that has developed around autism.
We outline how classical social theory (i.e. social identity theory) can help us to understand how and why
people mask by situating masking in the social context in which it develops. We draw upon the literature
on stigma and marginalisation to examine how masking might intersect with different aspects of identity
(e.g. gender). We argue that whilst masking might contribute towards disparities in diagnosis, it is
important that we do not impose gender norms and stereotypes by associating masking with a ‘female
autism phenotype’. Finally we provide recommendations for future research, stressing the need for
increased understanding of the different ways that autism may present in different people (e.g.
internalising and externalising) and intersectionality. We suggest that masking is examined through a
socio-developmental lens, taking into account factors that contribute towards the initial development of
the mask and that drive its maintenance.
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Autistic masking (also referred to in the literature as camouflaging1, compensation2 and most recently
‘adaptive morphing’3) 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. Masking is an emerging research area, and as such there is variation in the
terminology used to describe these experiences. Whilst some scholars draw a conceptual distinction
between masking/camouflaging/compensation1,4 and which aspects constitute subcomponents of another,
we use masking here holistically as an umbrella term to refer to the collection of these experiences, as it is
the term that has been used by the autistic community themselves57. Masking has been suggested to
relate to several key issues in the lives of autistic people, such as relationships and diagnosis8, suicidality9,
and burnout10. Thus gaining a precise understanding of what masking is, and how it manifests in the lives
of autistic people is essential. This paper aims to examine the literature so far, pinpointing factors which
have gone unexplored, and ideas for future research that build up a holistic picture integrative of both
internal and external aspects of masking. Whilst autistic masking is the focus of this paper we ask the
reader to stay mindful that a) many autistic people experience neurodivergence and/or marginalisation
(social exclusion) on multiple axes (i.e. autistic and dyslexic) and that b) many of these factors might
have relevance to other neurodivergent and/or marginalised groups, and are not necessarily limited to
autistic people.
Social Context
The historical social context in which autism and research about autistic people is situated, is essential to
understanding what masking is and why it occurs. Autism is a form of neurodivergence, characterised by
differences to the non-autistic population in several domains, including social and cognitive style, and
sensory processing11. Since the 1940’s, conceptualisations of autism12,13 have mainly derived from a
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medical model of disability and ‘otherness’ in which autism (and by consequence, autistic people) has
been framed as something to ‘fix’, ‘cure’, or in need of intervention14 due to perceived deficits in social
communication, repetition and restriction. The core traits associated with an autism diagnosis are traits
found across the human condition15 and it is their shared presence and profile which differentiates autistic
and non-autistic people, however they are often labelled as being ‘extreme’ manifestations16. A diagnosis
of autism is rooted in the specification that one must experience ‘significant impairment’ to be classified
as autistic. As such autistic ‘traits’, ‘behaviours’ and experiences cannot be labelled autism unless they
are experienced negatively, or are said to cause ‘impairment’. As a result, autistic people are viewed as
being on the fringe of human normality both in academia, and society in general1719.
With a pathologised status comes the experience of stigma, dehumanisation and marginalisation20 .
Stigma refers to the possession of an attribute which marks a person as disgraced or ‘discreditable’ 21,
marking their identity as ‘spoiled’. Stigmatised persons may attempt to conceal these spoiled aspects of
their identity from others, attempting to ‘pass’ as normal 21. Investigation of ‘passing’ and ‘concealment’
has been explored in depth in other stigmatised populations22, however the application of stigma in autism
research is a relatively new endeavour22,23. Stigma impacts both on how an individual is viewed and
treated by others and how that treatment is internalised and interacts with one's identity20,24.
Research has shown that dehumanising attitudes towards autistic people are still highly prevalent25 despite
years of campaigning for awareness and acceptance, and 80% of the stereotypical traits associated with
autism are rated negatively by non-autistic people26. These findings are consistent with the work of
Goffman in ‘Stigma’21, suggesting that familiarity with the stigmatised does not reduce negative attitudes
towards them. Rose27 explains: “We move, communicate and think in ways that those who do not move,
communicate and think in those ways struggle to empathise with, or understand, so they ‘Other’ us,
pathologise us and exclude us for it.” This stigma can manifest in negative social judgements towards
autistic people28 who are more likely to report negative life experiences29 including bullying30 and
victimisation29. Thus acknowledging the social context in which autistic ways of being are stigmatised
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and derided14,20,31 is essential for understanding reasons that masking may occur, and what can be done to
reduce the pressure to mask and associated impact.
Masking and Social Identity
As a marginalised group, autistic people are consistently presented with the message that their way of
being in the world is abnormal, defunct, or impaired 6,20,31. The social norms of autistic people differ to
those of the dominant social group, and ‘passing as normal’ or attempting to pass as normal might relieve
external consequences (such as bullying) whilst increasing internal consequences (such as exhaustion and
burnout)32. However the application of social theory to understanding masking is so far sparse. Goffman
described the process of concealment at length in ‘Stigma’21, the impact that conscious and unconscious
norms and societal expectations places upon stigmatised persons and the lengths they might go to in order
to conceal their otherness. Whilst masking has been referred to as ‘social camouflage’, there has been
minimal focus33,34 on the role that the social sphere plays in the development and maintenance of
masking. A person’s identity is shaped by myriad factors, not least the social environment that they
inhabit31. Here we discuss ways in which social theory can be applied to providing a meaningful
understanding of masking.
The development of the social self is argued in part to arise through the process of reflection of how we
are perceived by others35. Self-perception theory36 suggests that who we perceive ourselves to be is
influenced by multiple factors, such as point in the lifespan, or the aspects of our life we are asked to
consider (e.g. family, work). This begins to develop in childhood, where we explore different roles
through engagement with caregivers and play, and begin to examine ourselves through the lens of the
‘generalised other’37 (the theoretical outsider through whom we imagine what others might think of who
we are). We consider which parts of ourselves we want the world to see, which parts are acceptable38.
Over time, the generalised other is replaced partially through interaction with conspecifics, though we still
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imagine how they might respond to us through the generalised lens. This is in essence, a mentalising
process. An attempt to put ourselves into the mindset of another in order to work out how they might
think of us. Goffman described this process in ‘The Presentation of Self in Everyday Life’ 39 as one that
allows us to manage and control how others perceive us, a form of impression management. In this
regard, monitoring how we appear in different social situations is a part of the broader human social
experience and not limited to concealing ‘spoiled’ traits. Here the concept of masking is incompatible
with the idea of autistic mindblindness40. In order to mask one must be aware of how others might
potentially view them, and suppress aspects of their identity accordingly. The idea that an autistic person
might suppress aspects of themselves to ‘fit in’ is also at odds with theories that suggest that autistic
people are uninterested in social affiliation41,42. This assumption however, might account for the lack of
discourse around how social identity theories intersect with autistic masking. The fluctuation of human
identity across different social contexts has been well explored in the psychological literature43, and it is
acknowledged that our individual and collective selves may differ. This is yet to be explored in any detail
among autistic people.
Social Identity Theory44 argues that our self-perception is dependent upon temporal (i.e. point in the
lifespan) and situational (i.e. what is going on at the time) factors, with our identity on a continuum
between our personal perception of how we see ourselves as an individual, and how we see ourselves as
members of a particular group or collective. Our personal and group identities are comprised of many
factors, including our gender, race/ethnicity, sexuality, interests and personality traits. We may place
emphasis on different aspects as we move through different contexts and environments, minimising
aspects of our identity based on their perceived relevance to the current situation and/or group we are in.
These contextual shifts may form part of the impression management strategies described by Goffman 21
and are impacted by stigma. Goffman described how a ‘discreditable’ person may attempt to avoid stigma
or identification by carefully monitoring how they appear to others, whilst a ‘discredited’ (already
identified) person may perform the same monitoring to avoid further stigma. The identities of autistic
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people are often stigmatised at both the individual level (i.e. being labelled by others as ‘odd’ or ‘weird’32,
and at the group level (i.e. harmful stereotypes about autistic people26,32) in a way that intersects with
other aspects of their identity, leading to what Milton describes as psycho-emotional disablement (of
autistic identity)23. This stigma occurs for both autistic people who disclose (the discredited), and do not
(the discreditable), relating to what Botha32 has referred to as a ‘double bind’.
It is possible that autistic people experience the same contextual identity shifts as non-autistic people in
certain aspects of identity (i.e. between interacting with colleagues/friends for example; there is currently
very little empirical examination of this), but experience psychological stress specifically from the
masking of their autistic self because contextual shifts do not involve the hiding of one’s ‘true self’1.
Rather, emphasis is simply placed on a different aspect of identity as opposed to concealing it. An
alternative possibility is that aspects of identity that non-autistic people commonly view as more easily
contextualised, are for autistic people inherently related to their experiences as an autistic person. For
example, experiencing a passionate, singular focus on a favourite topic may make a shift away from that
aspect of one’s identity more difficult, blurring the line between contextual identity shifts and masking. A
recent investigation from Schneid and colleagues33 found that general impression management and
masking were interlinked for autistic people and could not be divorced from one another.
One possible area for exploration in understanding the relationship between contextual identity shifts, and
masking is the relationship between monotropism45 35 and identity. Monotropism is a theory of autistic
cognition grounded in an understanding of attention as interest-driven and more singular in focus45 . It
states that with limited attentional resources, autistic focus cannot be split between “performing a task
well”, and “losing awareness of information relevant to all other tasks” 45. The shifting of identity across
contexts draws upon attentional resources as we weigh up restrictions, internal (how we feel) and external
(what is going on around us) input, and hierarchy (what aspects of our identity that we value). Currently,
we know very little about the fluctuation of autistic identity with context. An important factor in this
weighing up process is likely to be how safe a person feels in revealing aspects of their identity,
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particularly if their identity is stigmatised. Cage and Troxell-Whitman’s34 findings suggest that masking
can fluctuate across contexts, but to develop a more meaningful understanding of this we might also want
to ask which aspects of contextual fluctuation are not harmful to autistic people.
Many autistic people experience marginalisation on several fronts46, in ways that intersect with other
aspects of their identity. The impact of marginalised status on identity has long been explored by Black
scholars47,48. Du Bois47 wrote of the ‘double consciousness’ of being Black in America: “It is a peculiar
sensation, this double-consciousness, this sense of always looking at one’s self through the eyes of
others”. The nature of masking, of having to suppress aspects of one’s identity, means having to see
oneself through the lens of another. Du Bois stated the difficulty reconciling two competing ideals or
aspects of the self, an idea which is drawn upon in the theory of cognitive dissonance 49. Cognitive
dissonance occurs when there is a discrepancy between two competing ideals held by an individual, i.e.
two contradictory beliefs or actions. This discrepancy causes stress, which an individual can attempt to
resolve by changing or justifying one of the ideals. In order to survive as a marginalised person, the
suppression of stigmatised aspects of identity may allow someone to walk in two (or more) worlds.
However continuing this suppression in the face of the cognitive dissonance can draw upon significant
psychological resources. Cage and Troxell-Whitman 34 considered the intersection between stigmatised
aspects of identity and masking, using Disconnect Theory 50 to examine costs and contexts of masking.
They found that autistic adults reported masking across multiple contexts (i.e. at work, with romantic
partners), for both conventional and relational reasons. Those who reported higher levels of masking, or
switching between masking/not masking also reported higher levels of stress, which is consistent with the
idea that disconnection from one’s identity causes psychological distress. This process of disconnection
might be essential in understanding burnout, which been described as the result of “chronic life stress and
a mismatch of expectations and abilities without adequate supports”10.
A potential relationship between masking and negative outcomes like autistic burnout 10 and suicidality 9
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mean that it is important that we acknowledge masking as a self-protective mechanism rather than a
necessarily conscious choice. Though masking has been defined as including both conscious and
unconscious aspects, much of the research so far has focussed on the conscious aspects (i.e. strategies that
are externally visible to others). It is possible that the significant energy it takes to mask means that it is
only sustainable for a period. In order to sustain masking long term, the person must find a way to resolve
the cognitive dissonance and resulting distress. It stands to reason that the unconscious aspects of
masking may be an attempt to resolve this dissonance, by distancing oneself from the process and
minimising the cognitive resources being dedicated towards maintenance. This process might also be
compounded by the presence of alexithymia and interoceptive disconnection. Here we outline the
potential relationship between these factors, and how they might lead to eventual burnout and exhaustion.
Alexithymia is defined as difficulty identifying one’s own emotional states and distinguishing them from
bodily states, and has a prevalence of around 50% in the autistic population51. Difficulty identifying one’s
own emotions can make it difficult to self-regulate, i.e. not realising that stress is increasing until you are
at a breaking point. In addition, autistic people have reported that the energy put into masking can further
detract from the already impacted ability to self-regulate 52, placing strain on an already depleted system.
This can be related back to Du Bois’47 theory of double consciousness whereby one aspect of identity is
attempting to suppress and control the emotions experienced by the other to maintain safety. The further
suppression of internal states and associated coping mechanisms (i.e. stimming 53) alongside an already
present difficulty identifying one’s own emotions could potentially be disastrous, leading to further long
term difficulties in mental health and wellbeing (i.e. burnout, and suicidality).
We draw upon Hochschild’s54 theory of Emotional labour as a useful framework for considering the
emotionally suppressive side of masking, taking into account the cognitive, bodily, and expressive factors
involved and what this might look like for an individual. Future investigation into the more unconscious
and dissociative aspects of masking, might draw upon Hochschild’s theory of Emotional Labor to
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understand the pathway from masking to burnout, to provide a deeper understanding of how to support
people in recovering from mental health issues. Figure 1 outlines the pathway that we are suggesting here,
however this should be considered alongside mediating factors, such as whether sensory needs are being
identified and met, and the occurrence/frequency of shorter episodes of fatigue and burnout.
Figure 1: Potential model for considering the relationship between masking and autistic burnout. The
diagram displays a linear relationship from stressor to masking response to presentation (which is
effortful for a person to sustain). The masking response feeds separately into disconnection from internal
cues, which then leads to an internal stress increase and difficulty regulating associated stress. In addition,
the effortful presentation feeds directly into internal stress increase. Together, these flow into what we
term ‘breaking point’.
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Masking and Gender
Limited conceptualisations (i.e. a stereotypical idea of a white, male, non-speaking child32) of what
autism ‘looks like’ has led to underdiagnosis in certain populations, notably people of colour55 , and
women56. The current diagnostic gap between men and women sits at around 4:157. Attempts to remedy
underdiagnosis in these populations has led to growth in understanding autistic heterogeneity42 and how
autistic characteristics might differ from person to person. However the view of autism as a manifestation
of ‘extremes’ of the human condition has pervaded professional knowledge, leading to debate over
whether diagnosis has become ‘diluted’ through the inclusion of those who would not traditionally meet
criteria specified in diagnostic measures 58. This view sits in opposition to the acknowledgement that
diagnostic criteria and understanding have been based upon external observations of limited samples of
(i.e. mostly male) autistic people 31,59 .These external observations exclude the impact of other
intersectional factors 48, such as identified and unidentified co-occurring conditions, gender, race,
sexuality and cultural background. All of the factors that shape our identity.
Gender disparity in autism diagnosis is historically grounded in diagnostic criteria being based on
observations of male children 60. However it has been strengthened by explanations such as the ‘extreme
male brain’ (EMB) theory of autism 61, which posits that autism is a manifestation of cognitive traits
associated with males (i.e. ‘systemising’, logic), rather than those of females (i.e. empathising). EMB
proposes that foetal androgens may be responsible for the masculine cognitive profile in autistic people,
and explain why men are more likely to receive a diagnosis 61. An alternative explanation is the ‘female
protective effect’ 62 which posits that women are less likely to exhibit the same degree of behavioural
autistic characteristics compared to male counterparts, and require heightened genetic and environmental
‘risk’ in order to do so. It is worth acknowledging here that there is very little evidence to support the idea
of sexually dimorphic neurology in humans 63.
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More recently, the disjoint between acknowledging limiting diagnostic criteria (and importantly, the
interpretations of those criteria), whilst also acknowledging population based underdiagnosis has led to
the proposal of the ‘Female Autism Phenotype’ 56, which posits that autistic women display a ‘female
specific’ presentation of autism, of which masking may be a core aspect. Whilst much of the current
research into masking does not state that masking is limited to females 9,34,64 , others do suggest that
females may be more likely to mask 65,66. Though it is important to recognise the different ways in which
autism might present in intersection with other aspects of a person’s identity and socialisation, the
labelling of this as ‘female autism’ is likely to lead to more confusion in the future, which has a tangible
impact outside of academia where these narratives might be perpetuated further. The idea of a female
autism phenotype also fails to recognise the large numbers of autistic people who are outside of the
gender binary 6769, potentially creating further barriers to diagnosis and support and the perpetuation of a
stigmatising narrative .
The idea of masking as a core trait of autistic women mostly comes from what Hull et al. 56 describe as a
discrepancy approach to masking. Studies taking a discrepancy approach examine the difference between
the self-reported internal characteristics of an autistic person, and how they appear externally using
behavioural assessments such as the ADOS70. Studies using this method have shown that autistic females
tend to show a greater difference between self-reported autistic traits and observer reports compared to
autistic males 65,71. However the discrepancy here may not lie with the person, but with how they are
conceptualised and operationalised using the tools of measurement. In the introduction to this paper we
briefly discussed the development of diagnostic tools which rely on the visibility of external behaviours
and which in turn draw upon historical autistic stereotypes. Deconstruction of these tools from an autistic
perspective 72 suggest that criteria used to measure how autistic a person appears is based on non-autistic
ideas of appropriate social behaviour. We can consider this issue through the lens of the double empathy
problem 73. Double empathy theory73 explains communication differences between autistic and non-
autistic people as a ‘mismatch of salience’; both groups draw upon different experiential knowledge,
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which may lead to bi-directional breakdowns in interpreting one another. Thus judging ‘how autistic’ a
person appears based on how well they are able to perform non-autistic behaviour makes little sense. The
presence (or lack of presence) of a decontextualised, subjectively coded behaviour is not necessarily an
indicator of masking. In short, it is important to recognise that a discrepancy between self-reported
‘autistic traits’ using clinical tools, and how a person appears outwardly does not necessarily relate to
masking. A reliance on stereotypical (non-autistic) expectations of what an autistic person might ‘look
like’ to an observer means that a person not fitting this stereotype may be coded as masking, as opposed
to a recognition that autistic people vary in their behavioural expression as much as the non-autistic
population.
Reflective approaches on the other hand examine masking as a set of behaviours and strategies that an
individual can implement which leads to variation in the presentation of their autistic characteristics 56.
Studies using this approach have mostly found no difference between self-reported masking in males and
females 1,9,34, which reinforces our previous point about stereotype and expectation. Whilst this reflective
approach is more aligned with the idea that autistic people are the experts in their own experience, there
are some issues here to take into consideration. In order to reflect on masking, people must be aware that
they are doing it which may make it difficult to measure both the conscious and unconscious aspects.
Researchers might attempt to examine this by comparing the masking experiences of people who have
received earlier diagnoses to those diagnosed more recently, as well as whether community involvement
impacts on how people experience masking 22.
Instead of using knowledge of atypical presentation of autism to acknowledge that autistic people are
likely to present in a number of different ways, we risk simply shifting the goalposts to a different set of
limiting criteria. This could potentially lead to further difficulties in recognising men/non-binary people
who present a profile that is more aligned with what is labelled ‘female’ autism, or excluding
women/non-binary people who do not fit the ‘female autism’ profile 74. The creation of subtypes and the
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language around them can also lead to additional forms of stigma manifesting75,76. Diagnosing women
with ‘female autism’ and men with ‘autism’ proper, lends credence to the suggestion that women are not
really autistic, and do not experience or understand the challenges that real autistics (i.e. men) experience.
Similar discussion can be seen in regards to the former autism/Asperger syndrome differential diagnoses,
and the harmful stereotypes that are associated (i.e. those with a diagnosis of Asperger syndrome being
assumed to be simply ‘eccentric’ and having low support needs, vs. the idea of someone with a diagnosis
of autism lacking capacity77). Research has suggested that autistic women and girls may have a different
set of challenges in regards to their social experiences 78, but that these differences are most likely driven
by social environment and gendered socialisation rather than diagnosis, as Rose27 points out “Autistic
Women and girls don't experience different Autism, they experience different prejudice”. It is essential
that we recognise the role that gender expectations and other intersectional aspects play in child
development and how that impacts the development of one's sense of identity alongside the development
of the mask. Again, we stress the need for the application of social theory to understanding the different
ways in which an individual's autistic characteristics may present. Understanding gender prejudice,
gender expectations and gender norms experienced by an individual helps us to avoid victim blaming (i.e.
shifting the spotlight away from the reliance on gendered stereotypes for diagnosis, and suggesting that
those who do not fit with normative expectations have been missed because they are ‘better at hiding their
autism’). We need to be clear when we examine masking that we are not conflating masking, and a person
simply not fitting with a stereotyped idea of what autism should ‘look like’.
Beyond Gender: Future directions in masking research
One possible consideration that might provide a more meaningful understanding of how autistic
characteristics manifest across individuals is that of internalising versus externalising. Internalising is
characterised by the process of directing emotional experiences inwards, i.e. ruminating. Whereas
externalising is associated with the process of directing emotional experiences outwards, i.e. impulsivity.
A person might display both internalising and externalising over the course of development, and across
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different contexts. Autistic people who are more prone to externalising might appear to be easier to
identify because of externally visible indicators whereas autistic people who are more prone to
internalising might be more likely to ‘fly under the radar’ for longer, or be diagnosed with things like
anxiety 56. It is important to recognise how individual characteristics may impact on the perceived
visibility of autism across different people, and not conflate this with masking.
It is also possible that internalised ableism and difficulty in identifying one’s own autistic traits could
impact on the ability to recognise and discuss one's own masking. Internalised ableism is the absorption
of negative beliefs about a particular disability and an attempt to distance oneself from that ‘spoiled
identity’79,80. Self-knowledge and reflection are essential for explicit discussions around masking, which
leads to an unfortunate pitfall of masking research: we can only really learn about masking from the
people that are aware they are doing it, when perhaps we stand to learn a lot more from those who are
unaware. There are anecdotal reports from autistic people of those who, through self-acceptance, deep
reflection and working through trauma have learnt to recognise some of the subconscious layers of
masking. The impact of receiving a diagnosis later in life in particular can lead to the experience of re-
processing one’s life history in the context of new information 81. This can make it difficult to disentangle
which parts of a person’s identity are truly ‘them’, and which parts might be a result of masking. The term
‘unmasking’ is common in community discussions, because it is the literal representation of an Autistic
person taking control of their mask and being more authentically themselves. This occurs by choice, after
a long process of learning about themselves introspectively, spending time amongst other Autistic people
and learning from sharing relatable experiences through outrospection and therapising themselves in
various ways82. Botha 22 examined the importance of autistic community connectedness (ACC) in
providing a buffer against the effects of minority stress. They found that ACC related to an improved
sense of well-being, however aspects of ACC impacted people in different ways. Political connectedness
for example can help to reframe the way in which someone views themselves, and reduces internalised
stigma by showing an individual that they are not ‘alone’. Further work into how ACC impacts on
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‘unmasking’ is needed to expand our understanding of how autistic community involvement and support
can help to mitigate the negative effects of masking and help people to minimise, and move past
internalised ableism.
It is also important that we are able to define what constitutes masking and related concepts clearly,
particularly given the impact this could have on the diagnostic process as it currently stands. Diagnosis is
still enshrined in the idea of being able to identify clinically defined autistic behaviour during the
diagnostic process. It is important to recognise that an autistic person expressing autistic characteristics in
a way that intersects with their individual identity is not necessarily masking just because it doesn't fit
with a stereotyped idea of what autism looks like to an external observer. This does not mean that they
are expressing a different kind of autism, or that they are ‘hiding’ their autistic traits under seemingly
‘normal’ interests. Likewise masking can impact on how a person might appear to observers and
differentiating these presentations is no easy job. Thus clinicians need to be aware that a) autism does not
‘look’ like one thing and b) that some people might mask during the diagnostic process, but also that c) b
is not always the cause of a. This is not an easy problem to solve (i.e. coming up with a standardised
notion of masking that one might examine using a psychometric measure during the diagnostic process),
but can be mitigated to some degree by ensuring that clinicians are aware of these issues and receive
adequate training and continued professional development around autism from those who understand
these concepts.
In addition to understanding how masking might look, the role of alexithymia should be considered in the
discussion of how masking feels. What may appear to be an ‘if X then Y’ statement (i.e. X happened, so I
started to do Y as a response) might frame a trauma response 3 as a deliberate cognitive strategy due to
difficulty in integrating the emotional aspect of experiences that led up to that point. Lawson 3 recently
stressed the consideration of social threat in masking, and potential ways to investigate this without
framing masking as a deceitful or deliberate process. This also highlights the importance of including
19
autistic people at all stages of autism research. Differing tacit interpretations of a statement due to
positionality (i.e. drawing on different experiential knowledge, which could lead to differing
interpretations to an original intended meaning) may be impacted by the double empathy problem 31,73 and
might be mitigated by including autistic people within a research team, particularly when working with
qualitative data.
Future research may want to examine the relationship between masking, identification of one’s own
‘autistic traits’, and alexithymia to understand how complex interactions between the three might impact
on how masking manifests. It is also important to explore trauma that can arise from lifelong stigma
experienced by autistic people, and how this can contribute to the development of masking across the
lifespan from childhood through to adulthood in relation to additional intersecting factors (e.g. co-
occurring identified and un-identified disabilities/neurodivergence, race, socio-economic status) which
produce and interact with the stigma that they have experienced.
We might also want to consider the developmental aspects of masking in greater detail, particularly in
relation to the internalised ableism and stigma previously discussed. Researchers have started to examine
masking in adolescents83,84, adding to our understanding of masking across the lifespan. We may also
want to consider the experiences of parents. Many parents of autistic children only realise that they are
themselves autistic once their child has gone through the diagnostic process 31,85,86. It is possible that
masking in these families might also constitute a learned behaviour, passed from parent to child.
Researchers may want to examine whether parents of autistic children report engaging in masking (or
similar identity management behaviour), and what the motivations behind this might be.
Finally, researchers may want to examine whether there are aspects of masking that autistic people feel
are beneficial or have an overall positive impact on their wellbeing. Whilst we have mostly focussed on
20
the negative side of masking in this paper it is possible that many people view masking as part of a viable
social strategy.
Conclusion
We suggest that future research considers masking as a multidimensional, fully interactive construct. To
start, masking research needs to be fully grounded in social theory which acknowledges the role that the
social environment and collective norms have upon the autistic person. Applying a social lens
acknowledges that autistic people are social beings that do not develop in a vacuum. Moreover masking
should be considered in terms of its process; we might think of masking like the process of rock
formation. What we see is the rock face, akin to the externally visible strategies that one might use in
order to mask, e.g. making eye contact, mimicking facial expressions. But these strategies have been
moulded over time, transformed by pressure, building up layer upon layer to create what is seen by the
observer. Future research should consider the role of environment and context in masking, the outside
pressures that led to the initial development, and the impact that this has had upon the individual. It
should also take into account the developmental trajectory of masking, and the role that time and trauma
play in the development of the mask, as well as the intersection between autism and other aspects of a
person’s identity (such as gender, or race/ethnicity). The interaction between these processes and
outcomes is likely to be an essential factor in understanding what can be done to provide better support
for those whose mental health is negatively impacted by masking.
21
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... Autism 00 (0) Autistic 1 people commonly experience co-occurring mental health difficulties and are diagnosed with anxiety, social anxiety, depression and other mental health difficulties at rates ranging between 20% and 80%, considerably higher than those reported in the general population (Curnow et al., 2023;Hollocks et al., 2019). Psychosocial experiences contribute to explaining these high rates, as autistic people often encounter more social and communicative challenges than their non-autistic peers, including being misunderstood, stigmatised, discriminated against and excluded (Pearson & Rose, 2021). Resultantly, many autistic people camouflage 2 their autistic traits to navigate non-autistic social landscapes -a concept called 'autistic camouflaging' (hereafter 'camouflaging'). ...
... Concealment of needs to reduce conflicts is frequent in autistic people [50], further consuming energy and cognitive resources, or "spoons" [28]. And as other aspects related to "camouflaging", it has severe health consequences [51]. ...
Preprint
[Full text in DOI link under the title] The study of the human response to sound has typically considered the average experiences of young individuals with standard hearing capabilities and sensitivity, and although research on high noise sensitivity and its effects is extensive, practical considerations in acoustics are usually limited to specific facilities. Thus, the acoustical characteristics of daily life environments can constitute an important barrier, for example, to autistic people, who often experience high noise sensitivity. To contribute to an in-depth understanding of the impact of noise sensitivity in real-life scenarios, this study presents the results of interviews with 12 autistic adults living in the UK exploring their lived experiences with sounds, spaces and society. Four themes were developed in the thematic analysis of the interviews: 1) High sound sensitivity affects every aspect of life; 2) Lack of understanding and acceptance - sensory gaslighting; 3) Agency is crucial; 4) Positive impact of music and natural environments. The findings suggest that challenges associated to high noise sensitivity can be the result of a heightened response to sound, but are significantly aggravated by social attitudes to sensory differences and pre-conceptions of what is “normal”. Failing to consider diversity in auditory experiences can have important negative consequences for personal and professional life, financial prospects, health and overall well-being. This study calls to observe these experiences under a human rights lens to guarantee the full participation in society on an equal basis, and to continue the work in aural diversity and auditory accessibility in acoustics and soundscape research and practice.
... LGBTQIA+ spaces (Hillier et al., 2020;McAuliffe, Walsh and Cage, 2022) as part of the process of self-naming, identification, and knowing 'who I am'. Findings also support the usefulness of political thought and appurtenance in seeing one's experience not as an 'individual problem' but a structural one, and so potentially reducing internalised stigma (Pearson and Rose, 2020). ...
Thesis
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This thesis explores autistic people’s experiences of sexuality, intimacy, and authenticity. The cultural and scientific contexts in which autistic people and autism researchers are embedded tend to assume deficit, limitation or damage when considering social, sexual, or intimate autistic possibilities. These assumptions are omnipresent and stated as fact in much mainstream autism research, casting a pall over discussions of sexuality, intimacy, authenticity, and indeed any inter- or intra-personal endeavour undertaken by an autistic person. Working within a framework of critical autism studies, and using a qualitative and participative methodology, the main thrust of this research involved a total of 24 in-depth interviews with 16 participants, leaning on Grounded Theory for data collection and analysis. An online survey with 567 respondents was also carried out, and a research website set up. A Research Advisory Group of nine autistic people provided input regarding appropriate research methods and instruments and piloted interviews, many communicating with me and each other through the research website’s private forum. Findings show that the challenges experienced by participants as they set out on their intimate journeys had less to do with intrinsic difficulties linked to ‘being autistic’ than with the point of encounter with a hostile and alienating environment. This environment is one in which difference of any kind is policed and punished, and sexual and gender identities and behaviours other than cis-gendered heterosexuality are rendered invisible or undesirable. For many participants, an intimate future was initially unimaginable. The ways in which they move to resolve these unpromising beginnings, however, reveal themselves to be interwoven with participants’ autistic subjectivity, involving, inter alia, intense interests, accessing and creatively navigating diagnosis, and meeting and loving other autistic people. Running through and expressed within all these themes is the whisper of authenticity. When authenticity is threatened, so are intimate possibilities; when it is recognised and nurtured, it is revealed to be a highly valued quality, a central part of what it means to participants to ‘be autistic’, and an important step on the path to accessing and maintaining satisfying, safe, and meaningful intimate relationships.
... This may be explained by the "camouflage mechanism. " Camouflaging was defined as the utilization of specific behavioral and cognitive strategies by autistic people to adapt to the predominately non-autistic social world (42)(43)(44)(45). Emerging evidence suggests that autistic females demonstrate higher levels of camouflage than autistic males, and higher compensatory camouflage levels are linked to higher IQ (46,47). ...
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Research on the potential benefits of technology for autistic children is an emergent field in Human-Computer Interaction (HCI), especially within the Child-Computer Interaction Community. At the same time, there are concerns about what these interventions and technologies are for and who benefits. We present a research and design approach for Tangible User Interfaces (TUIs) for minimally verbal to nonverbal autistic children following a neurodiversity narrative through three field studies developed and evaluated with three groups of children within a semi-structured scholastic environment between 2018 and 2021 in the UK. We discuss our insights for research and TUI designs in the context of social play for nonverbal autistic children and critically reflect on the methods and approaches we used. We do this to disrupt the normalisation agenda that subtly permeates the field of HCI and to direct designers’ attention toward supporting autistic ways of being in the world.
Chapter
In this chapter I discuss and critically consider the importance of identity, culture, community, and space for improving the well-being of the (our) stigmatised and marginalised Autistic population. I will do this by first discussing a tale of two “autisms”: the first being the pathological and paradigmatic narrative that constructs “autism” as a medical neurodevelopmental “disorder” embedded within a “culture of autism”; the second narrative being that of Autistic culture, with Autistic experience understood from a neurodiversity perspective, where Autistic people are different, not disordered. I touch on the well-being issues the Autistic community experience, going on to explain how fostering an Autistic identity can act as a “social cure”, one that affords Autistic people symbolic and material support from community members. Lastly, I consider the refuge and healing properties of Autistic spaces, and how these spaces may prove to be a stronger tool for discovering one’s Autistic-ness as a teen or adult compared to current infantilised medical diagnostic processes. I hope to show the importance of Autistic identity, culture, community, and space for Autistic well-being.
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This paper highlights the role of terminology, such as camouflage and masking, commonly used in autism research. The author suggests researchers question assumptions around language commonly used to check it is fully representative of the autistic position. Being autistic often means being very literal. This literality means it is very important for researchers-particularly non-autistic researchers-to design research questions in a way that will gather accurate information often underlying autistic understanding. Words are powerful tools and lead to beliefs and positions held. Adaptive morphing in autism (currently referred to as camouflage or masking) infers a response, not of deceit, but one that is biological and not necessarily chosen. The author of this paper suggests masking, as a choice to deceive, is quite different from adaptive morphing for safety.
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Unlabelled: In this commentary, we describe how language used to communicate about autism within much of autism research can reflect and perpetuate ableist ideologies (i.e., beliefs and practices that discriminate against people with disabilities), whether or not researchers intend to have such effects. Drawing largely from autistic scholarship on this subject, along with research and theory from disability studies and discourse analysis, we define ableism and its realization in linguistic practices, provide a historical overview of ableist language used to describe autism, and review calls from autistic researchers and laypeople to adopt alternative ways of speaking and writing. Finally, we provide several specific avenues to aid autism researchers in reflecting on and adjusting their language choices. Lay summary: Why is this topic important?: In the past, autism research has mostly been conducted by nonautistic people, and researchers have described autism as something bad that should be fixed. Describing autism in this way has negative effects on how society views and treats autistic people and may even negatively affect how autistic people view themselves. Despite recent positive changes in how researchers write and speak about autism, "ableist" language is still used. Ableist language refers to language that assumes disabled people are inferior to nondisabled people.What is the purpose of this article?: We wrote this article to describe how ableism influences the way autism is often described in research. We also give autism researchers strategies for avoiding ableist language in their future work.What is the perspective of the authors?: We believe that ableism is a "system of discrimination," which means that it influences how people talk about and perceive autism whether or not they are aware of it, and regardless of whether or not they actually believe that autistic people are inferior to nonautistic people. We also believe that language choices are part of what perpetuates this system. Because of this, researchers need to take special care to determine whether their language choices reflect ableism and take steps to use language that is not ableist.What is already known about this topic?: Autistic adults (including researchers and nonresearchers) have been writing and speaking about ableist language for several decades, but nonautistic autism researchers may not be aware of this work. We have compiled this material and summarized it for autism researchers.What do the authors recommend?: We recommend that researchers understand what ableism is, reflect on the language they use in their written and spoken work, and use nonableist language alternatives to describe autism and autistic people. For example, many autistic people find terms such as "special interests" and "special needs" patronizing; these terms could be replaced with "focused interests" and descriptions of autistic people's specific needs. Medicalized/deficit language such as "at risk for autism" should be replaced by more neutral terms such as "increased likelihood of autism." Finally, ways of speaking about autism that are not restricted to particular terms but still contribute to marginalization, such as discussion about the "economic burden of autism," should be replaced with discourses that center the impacts of social arrangements on autistic people.How will these recommendations help autistic people now or in the future?: Language is a powerful means for shaping how people view autism. If researchers take steps to avoid ableist language, researchers, service providers, and society at large may become more accepting and accommodating of autistic people.
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In response to Vivanti’s ‘Ask The Editor…’ paper (2020), we argue that the use of language in autism research has material consequences for autistic people including stigmatisation, dehumanisation, and violence. Further, that the debate in the use of person-first language versus identity-first language should centre first and foremost on the needs, autonomy, and rights of autistic people, so in to preserve their rights to self-determination. Lastly, we provide directions for future research.
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There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understandings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure strategically. The implications of these findings are discussed further in the article.
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The current diagnostic practices are associated to a 20-fold increase in the reported prevalence of ASD over the last 30 years. Fragmenting the autism phenotype into dimensional "autistic traits" results in the alleged recognition of autism-like symptoms in any psychiatric or neurodevelopemental condition and in individuals decreasingly distant from the typical population, and prematurely dismisses the relevance of a diagnostic threshold. Q1 Non-specific socio-communicative and repetitive DSM 5 criteria, combined with four quantitative specifiers as well as all their possible combinations, render limitless variety of presentations consistent with the categorical diagnosis of ASD. We propose several remedies to this problem: maintain a line of research on prototypical autism; limit the heterogeneity compatible with a categorical diagnosis to situations with a phenotypic overlap and a validated etiological link with prototypical autism; reintroduce the qualitative properties of autism presentations and of current dimensional specifiers, language, intelligence, comorbidity, and severity in the criteria used to diagnose autism in replacement of quantitative "social" and "repetitive" criteria; use these qualitative features combined with the clinical intuition of experts and machine-learning algorithms to differentiate coherent subgroups in today's autism spectrum; study these subgroups separately, and then compare them; and question the autistic nature of "autistic traits".
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This thesis aimed to investigate the role of minority stress (MS) and autistic community connectedness (ACC) on mental health (MH) and wellbeing in the autistic community. Multiple methods were used, across four studies. Study one consisted of a qualitative study using grounded theory tools to create a measure of ACC, as none existed. The findings indicated that ACC compromises of three sub-domains – belongingness, social, and political connectedness. Stigma and identity both informed the level of ACC experienced by participants. In study two, a measure of ACC was created and validated in a new sample of autistic individuals (N = 133) using confirmatory factor analysis to test factor-structure and for item purification. Results indicated factorial, convergent and discriminant validity, for a 10-item scale. Studies three and four consisted of a cross-sectional and longitudinal survey where 195 autistic and 181 non-autistic people completed questionnaires at baseline and 99 autistic participants completed measures nine months later at follow-up. Resilience resources, ACC, MH and wellbeing, and MS were measured both times. Study three showed that the differences in MH, wellbeing, and resilience resources between the autistic and non-autistic sample persisted beyond demographics and general stress. Higher MS predicted lower MH and wellbeing, while ACC moderated the relationship between MS and MH, ameliorating the effects of MS. The longitudinal study (study four) showed that higher MS scores at baseline were associated with worse MH and wellbeing nine-months later, while higher ACC was associated with better MH and wellbeing. The results suggest a model of ACC and MS whereby autistic people may experience differing levels of ACC depending on experiences of stigma and autistic identity. This ACC in turn moderates the impact of MS on MH.These findings and implications of the research are further integrated into autism, MS, MH, and community literature.
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Purpose The purpose of the paper is to review autism identification across different ethnic groups. Diagnosis of autism may be missed or delayed in certain ethnic groups, leading to such groups being underserved relative to their needs. This can result in members of such groups being effectively denied essential avenues of support that can substantially improve the quality of life of autistic persons as well as those whom care for them. Design/methodology/approach A literature search for articles reporting autism identification across ethnic groups was undertaken. Data are compared, with a special focus on possible explanations for any inter-group variation. Findings Autism identification appears to be generally lower in minority ethnic groups relative to the majority population. Individuals presenting with autism from minority groups appear to have more severe forms of the condition. Originality/value There are a multitude of potential explanations for inter-ethnicity variation in autism identification, including health care-related factors, broader environmental influences, cultural factors and possible biological differences. Implications for clinical practice and public health include a need to look at means of ensuring equitable access to relevant autism diagnostic and support services across ethnic groups. Further work is required to better understand the belief systems that operate within specific ethnic groups, how this may potentially impact upon autism identification and measures to address the concerns of such groups.
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Recent years have seen a substantial increase in the amount of research concerning sex/gender differences in the human brain. In this chapter, we review and synthesize some key research findings concerning sex/gender differences in brain structure, brain function, and structural/functional connectivity. In light of the findings, we concluded that although sex/gender differences in the brain exist at multiple levels, results in some areas are inconsistent, partly because the large inter- and intra-individual variability within each sex/gender has not been sufficiently considered. Consequently, neuroscience research should routinely include both men and women. Moreover, concepts referring to “male brain”, “female brain” or “sexual dimorphism” are outdate and incorrect, and therefore should be avoided in the neuroscientific literature. Finally, neuroscientists with a focus on sex/gender difference should adopt a psychobiosocial approach whenever possible, because structural and functional differences in the brains of men and women will never be fully understood, if psychological, biological and environmental/social factors are not routinely taken into account in combination.