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Autism and the ‘double empathy problem’

Authors:
  • University of Sunderland in London
DOI: 10.4324/9781003189978-6
4 Autism and the ‘double
empathy problem’
Damian E. M. Milton, Krysia Emily Waldock,
and Nathan Keates
Introduction
Since the term autism first entered common clinical usage, the notion that
autistic people were somehow deficient in their social interaction and com-
munication has been central to how it has been conceptualised and diag-
nosed, those so diagnosed thus being commonly represented as radically
dierent from non-autistic people.1 From the ‘machine-like’ metaphor
adopted by Hans Asperger (Milton 2014), through the ‘empty shell’ of
Bruno Bettelheim (1967), to the ‘triad of impairments’ as outlined by Lorna
Wing and Judith Gould (1979), one can see an emphasis on defining autism
in terms of a lack of social reciprocity. Deficits in social interaction, social
communication, and – according to some – ‘social imagination’ have thus
become an embedded framework in diagnostic criteria and tools for distin-
guishing autistic people from subjects with normative development. Perhaps
the most dominant cognitive theory that has attempted to explain these
issues has been that of a deficit in ‘theory of mind’ and variations thereof
such as ‘empathising-systemising’ theory and the theory of the ‘extreme
male brain’ (Baron-Cohen 2003). Theory of mind refers to the ability to
imagine the thoughts and feelings of others, in order to comprehend and
predict their behaviour. For Baron-Cohen (2003) autistic people show a lack
of theory of mind or ‘cognitive empathy’ (the ability to infer mental states
and predict the behaviour of others) while being able to feel ‘aective empa-
thy’ (emotional reciprocity) and emotional sympathy when made aware of
the situation and context. Baron-Cohen (2003) also theorises that whilst
autistic people may have deficits in ‘empathising’, they can have strengths
in what is referred to as ‘systemising’ – the ability to identify the rules and
patterns that govern a system in order to predict how that system or net-
work will behave. This dierence is said to be due to elevated levels of foetal
testosterone in early development and postulated as a reason for higher
diagnostic rates among males.
In more recent years, we have seen a growing number of criticisms of
conceptualising autism as a social/empathic deficit (Milton 2012a, 2012b,
2014; Yergeau 2013; Gernsbacher and Yergeau 2019; Nicolaidis et al.
Autism and the ‘double empathy problem’ 79
2018). The deficit model of autistic social interaction fails to acknowledge
relationality and how social reality is constantly reconstructed and contested
by social agents, often representing the autistic person as lacking agency, of
being somehow outside of society and processes of socialisation, and there-
fore outside of ‘normalised’ concepts of empathy. This notion of autistic
people as being in deficit is reinforced by a variety of theories and accom-
panying narratives in relation to their sociality and interaction, whereby
autistic people are framed as lacking a theory of mind (Baron-Cohen etal.
1985), lacking in empathy (Baron-Cohen etal. 2002) and being ‘mindblind’
(Baron-Cohen 1995). Particularly of note are the assertions that a theory of
mind is a ‘quintessential aspect of being human’ (Baron-Cohen 2000, p.3)
and that autistic people are unable to empathise (Baron-Cohen etal. 2002).
Assumptions surrounding what constitutes ‘empathising’ and ‘systemising’,
and their association with specific genders and gender roles (Sample 2013),
has led to critique and debate on the usefulness of this concept when applied
to autistic people. Empathising in relation to autistic people has been defined
as ‘having an appropriate emotional reaction to another person’s thoughts
and feelings’ (Baron-Cohen 2009). Questions remain as to who defines an
‘appropriate’ emotional response. Although some may link empathising
with aective empathy (Davis 1994), social norms may contribute to what
may be considered ‘appropriate’ in terms of the appropriateness of an emo-
tional response. Discussions of ‘appropriateness of emotional response’ run
the risk of radically othering social actors from dierent lifeworlds, through
situating the interactional onto the individual – in this case, the autistic indi-
vidual who sits at a disempowered position (Milton 2016).
Systemising has been described as the drive to analyse or construct sys-
tems – any kind of system (Baron-Cohen 2009). Although this is an attempt
to give a more ‘strengths-based approach’ to autistic cognition, with the
understanding that autistic people may spot patterns or collect informa-
tion on certain topics, systemising when paired with a deficit in empathising
as a dichotomy, moves away from a ‘strengths-based approach’. Through
pairing such dierent tasks and processing together as a dichotomy, this
produces an appearance of a polarised dichotomy between empathising and
‘systemising’. Furthermore, associations of lacking empathy and increased
systemising have resulted in theorising of an ‘Extreme Male Brain’ (EMB)
(Baron-Cohen 2002). This theory has been labelled as essentialist and reduc-
tionist (Ridley 2019), with critique of a ‘gendered schema’ (Krahn and Fen-
ton 2012), disempowering autistic people through reducing autistic brains
to that of ‘extreme male brains’.
Whilst we agree that it is true that autistic people, particularly when
young, can struggle to process and understand the ‘quick-fire’ social inter-
actions which many non-autistic people take for granted, we want to ask
the following questions. To what extent do such interactions require empa-
thy? What do we mean when we talk of empathy? Where does the ability
to predict the thoughts and actions of others reside? To what extent do
80 Damian E. M. Milton et al.
non-autistic people acquire a ‘theory of autistic mind’? How do such ways
of viewing autism produce oversimplified dehumanising and stigmatising
narratives? Drawing upon both personal experience of being autistic and a
parent to an autistic child, as well as theory and relevant interdisciplinary
research, this chapter will explore these questions, arguing that such a way
of framing autism and empathy is deeply problematic. The theory of the
‘double empathy problem’ and relevant related research will be described,
which suggests that rather than a deficit solely located in the mind of the
autistic person, during empathetic engagements breakdowns in reciprocity
and mutual understanding can occur, especially between people of very dif-
fering dispositions.
So what exactly is empathy, anyway?
Definitions of empathy relate to a breadth of cognitive and subjective states,
often as Baron-Cohen (2003) indicates, split into ‘cognitive’ and ‘aective’
empathy. In contrast to psychopathy and narcissism, which are often char-
acterised as resulting from deficits in aective empathy, autism (alongside
bipolar disorder and borderline personality disorder) have been linked to a
deficit in cognitive empathy. More recently, it has been suggested that autis-
tic people may struggle with ‘alexithymia’, which indicates an impairment
in understanding, processing, and describing one’s own emotions, poten-
tially aecting on one’s ability to recognise or mirror those of other people
(Cook etal. 2013).
Whilst much theorising of empathy resides within the discipline of psy-
chology, which often leaves the social context of empathy unaccounted for,
it is worth taking a broader view of the enactment of empathy (or not)
within social contexts. Whilst it is true that people tend to show aective
empathic reactions to people they love and care about deeply, this often
becomes less the case the further away from such attachments a person may
have with others. The work of Tajfel etal. (1979), for example, shows how
empathic reactions were heightened toward those considered part of one’s
own social ‘in-group’ and lowered in interactions with people perceived as
members of an ‘out-group’. From this broader social perspective, one may
wish to question perhaps that the framing of autism as a lack of (cognitive)
empathy may indeed itself be symptomatic of a lack of empathy (both cog-
nitive and aective) toward autistic people and their way of being (or form
of life: Chapman 2019). If the theory of an autistic deficit were true, then it
would follow than non-autistic people would not struggle to empathise and
understand autistic behaviour, as they would not hold such a deficit. And
yet, there are numerous conferences, books, and articles produced every
year attempting to help explain the ‘enigma’ (Frith 2003) of autism. One
may then legitimately ask if this framing of autism as an enigma is revealing
of some sort of empathetic deficit on the part of non-autistic people toward
autistic people. When considering aective empathy, then, one may wish to
Autism and the ‘double empathy problem’ 81
view it on a scale that also includes apathy and antipathy toward the expe-
riences of others, and what Cameron (2012) described as ‘dyspathy’ (the
lack of employing empathy toward others). One might even suggest that the
whole notion of emotional empathy is somewhat of a convenient illusion
(Milton 2012a) constructed so that we feel less alone and isolated in our
existential angst. In a psychotherapeutic setting, Holland (this volume) iden-
tifies the limitations and dynamical ecologies of empathy (i.e., what once
was an empathic gesture may not be recalled as such later) and supports
the view that rather than being straightforward – even among non-autistic
people – empathy is a fraught process, subject to emotional fluctuations and
incomprehension.
The disposition of an outsider
Damian
I was diagnosed as being on the autism spectrum in 2009 at the age of 36.
This was following my son’s diagnosis some years earlier at the age of 2.
Like many others of my generation or older, the broader autism ‘spectrum’
as a concept had not been applied to me until well into adulthood. When
Iwas younger, there had been numerous psychiatric professionals who had
their own pet theories as to what was ‘wrong with Damian’ (Milton 2013),
but autism was not a conceptual framework Ihad to work with until Iwas
introduced to it in relation to my son. From as far back as Iremember,
Ihave felt as something of a social outsider, struggling to navigate the school
environment and peer groups, and then relationships and workplaces in
later life. In my young adulthood, Ihad passively rebelled and ‘dropped out’
to the fringes of social life and was soon considered ‘long-term unemployed’
with few prospects. It was during this time that Idiscovered the philosophi-
cal work of Robert Pirsig (1974, 1991) and began my own explorations
into the ‘qualia’ of lived experience. It was perhaps here that such theorising
and reflection on my own experiences as a misunderstood outsider were
where the foundations of what was to later be understood the concept of the
‘double empathy problem’ were first laid out for me. My own experiences
seemed to be more locked into the ‘dynamic quality’ of the sensory world
that Pirsig referred to than those of others. The feeling of sharing of ‘qualia’
reported on by others was but a rarity to me.
By the mid-1990s, Ihad begun to delve into the disciplines of sociology
and philosophy, and had begun my second attempt at a degree course. It
was here that Icame across the work of Thomas Nagel and in particular
the article: ‘What is it like to be a bat?’ (Nagel 1974). For me, it was of
course impossible to have any idea what it was like to be another person, let
alone a bat. Ialso read the seminal works of Erving Goman (1956, 1963),
Howard Becker (1963), Harold Garfinkel (1967), and others who were to
become central figures in my own theoretical work for years to come. By
82 Damian E. M. Milton et al.
the late 1990s, Ihad been influenced by the work of disability scholars and
radical psychiatrists, and begun to theorise about how people were uniquely
constructed materially, socially, and discursively, yet within power relation-
ships whereby some dispositions were deemed pathological disorders and
others within the normative range:
Extremes of any combination come to be seen as ‘psychiatric deviance’.
In the argument presented here, where disorder begins is entirely down
to social convention, and where one decides to draw the line across the
spectrum [spectrum referring to the ‘human spectrum of dispositional
diversity’]. (Milton 1999, cited in Milton 2017, p.32)
At this time, Ispoke of a ‘human spectrum of dispositional diversity’, whilst
unaware of the notion of an ‘autism spectrum’ or that the Australian soci-
ologist Judy Singer had coined the term ‘neurodiversity’ (Singer 2017). For
me, this dispositional diversity was not fixed or static, nor completely fluid,
but changeable nonetheless, albeit for each person within certain somatic
aordances and bodily limitations, with attributions of a disordered dispo-
sition being the somewhat arbitrary decisions of those with power in society
to shape how less powerful others are perceived. When my son and then
Iwere diagnosed as autistic in the first decade of the 2000s and I came
across the dominant theories for explaining autism, it was inevitable that
Iwould find the theory of mind deficit hypothesis to be partial at best.
Krysia
I was diagnosed as autistic at the age of 3 in 1995, and a second time at the
age of 13 in 2005. Two main things have followed me throughout my life as
an autistic person: the persistent feeling of being an outsider, which led to a
PhD exploring belonging for autistic people, and particularly ‘outsiderness’
within communication and salience. Iwas always ‘getting the wrong end
of the stick’ or being told Iam ‘misinterpreting things’, placing me into the
position of the deficited individual, however hard Itried. Even studying two
foreign languages left me as a ‘perennial outsider’, with my autistic nature
being misunderstood by both the French university system and my former
German employers. The narratives Ihad been fed, and those my parents had
been fed, were those framing autistic people as ‘lacking theory of mind’, and
not considering the bidirectional nature of communication. Socially situat-
ing me as the ‘outsider’, paired with narratives of ‘lacking a theory of mind’,
further ostracised me from having my own agency and built the idea that
Ishould perceive myself as having less value than others.
Theory of mind (Baron-Cohen etal. 1985), as previously stated, frames
autistic people as ‘lacking a theory of mind’. Theory of mind in the case of
the argument of Baron-Cohen etal. (1985) assumes a ‘sameness’ in theory
Autism and the ‘double empathy problem’ 83
of mind of interlocutors, with the theory of mind being used in social and
discursive situations. Apositioning of a lack of theory of mind onto one
individual when there is a breakdown in reciprocity, notably of the theory
of mind in this case, creates otherness through the lack of a ‘sameness’,
like in Tajfel and Turner (1979), and Turner (1989). The deficit framing of
theory of mind in autistic people creates the illusion of empathy being built
on having a theory of mind, and therefore an assumption of ‘sameness’
between social agents. Those who fall outside the parameters of this same-
ness – or those who fall at the extremes of dispositional diversity (Milton
1999, cited in Milton 2017, p.32) – may be considered as socially deviant
(Goman 1963), with the ‘flaw’ of a lack of empathy being likely to be
socially stigmatised. Othering autistic people not only stigmatises them, but
it also casts them as ‘non-moral agents’. In addition, framing empathy as a
construct with moral implications has the consequence of making autistic
people as the ‘immoral other’: stigmatised and deviant on account of per-
ceived moral failings. The implications of presenting autistic people in this
manner are numerous, leading to ethical quandaries regarding interventions
done to autistic people (e.g., in reference to social skills training: Bambara
etal. 2021; and in response Keates 2022) and questions on the political
nature of being autistic in society and social groups (e.g., Waldock 2021).
The double empathy problem – a growing evidence base
The original published definition of the double empathy problem is as
follows:
A disjuncture in reciprocity between two dierently disposed social
actors which becomes more marked the wider the disjuncture in dispo-
sitional perceptions of the lifeworld – perceived as a breach in the ‘natu-
ral attitude’ of what constitutes ‘social reality’ for ‘neuro-typical’ people
and yet an everyday and often traumatic experience for ‘autistic people’.
(Milton 2012a, p.884)
Due to diering qualia of experience, social lifeworlds, dispositional view-
points and discursive repertoires, interactions between autistic and non-
autistic people are vulnerable to breaches in mutual understanding, framed
as a ‘double problem’ as both parties in the interaction will experience a
sense of disjuncture, not simply a deficit in the autistic person’s mind. Whilst
this experience may be novel for many non-autistic people, it is common-
place for autistic people. Such a framing would also suggest a greater likeli-
hood of feelings of empathy between autistic people with one another and
with those they have close relationships with, yet perhaps over diering
elements of their lives.
Whilst the double empathy problem was initially proposed based upon
personal introspection and qualitative accounts (Milton 2017), we have seen
84 Damian E. M. Milton et al.
in recent years a growing body of experimental research that is supportive
of the double empathy problem theory (Milton etal. 2020). Sheppard etal.
(2016) researched how well non-autistic people could interpret the mental
states of autistic people within naturalistic settings. They found that non-
autistic people were less able to guess an event that a person being recorded
was responding to if they were autistic, apart from when the reactions were
to a joke. Edey etal. (2016) asked participants to use two triangles to depict
mental states within an interaction such as ‘mocking’. Non-autistic partici-
pants were better able to decipher the mental states being depicted of anima-
tions that had been created by other non-autistic people compared to those
created by autistic participants.
There are physiological similarities between non-autistic and autistic
dyads found by Stevanovic etal. (2019) whereby both neurotypes require
dominance within a social exchange to experience ‘calm’ (autonomic nerv-
ous system). Stevanovic and colleagues suggest that it is the non-autistic
interlocutor that creates the ‘trouble’ within the cross-neurotype dyads,
which supports the theory of cross-neurotype dierential socialisation.
Furthermore, Stevanovic and colleagues suggest that autistic people have
increased aective empathy, due to the non-autistic sample providing exten-
sive emotionally relevant information leading to ‘socio-emotional overflow’.
In a study looking at first impressions, Stagg etal. (2014) found that non-
autistic people rated autistic children as less expressive and attractive than
non-autistic children based on short recordings of them. Sasson etal. (2017)
found that non-autistic people rated autistic adults and children less favour-
ably than non-autistic people in a range of measures and a reduced rating
for the intention to interact with them. This was replicated by Alkhaldi etal.
(2019) and Scheerer etal. (2022), extending the findings across multiple sit-
uations. Sasson and Morrison (2019) also found, however, that by provid-
ing information to participants regarding the diagnosis of autism, autistic
people were rated more favourably. Of course, such knowledge and shift in
attitudes may not be mirrored in people’s actions in everyday life. Of inter-
est is that a favourable first impression of autistic people may exist when
text-based and not through video (Cage and Burton 2019).
Utilising the same recordings from Sasson etal. (2017) and Sasson and
Morrison (2019), Sasson etal. (2018) investigated metaperceptions between
autistic and non-autistic people. Participants were asked how they thought
others would perceive them, and this was compared to how observers did
on a range of personality traits. In this study, autistic people overestimated
how positively they would be seen by others. Whilst this study looked into
how people thought they would be perceived by others in general, Usher
etal. (2018) studied the perceptions of dyads of young people where one
of the pairing was autistic and one not who engaged in a five-minute con-
versation. In this study, autistic participants were more accurate than non-
autistic people at judging whether the other liked them or not.
Autism and the ‘double empathy problem’ 85
In a study by Heasman and Gillespie (2018), Interpersonal Perception
Methodology was utilised to examine the perceptions and misperceptions
of dyads made up of autistic people and their family members. Both autis-
tic people and their family members predicted that the other would rate
them dierently than they would themselves on a range of traits. Both
groups were, however, fairly accurate in estimating the perceptions of each
other. When asked for reasons for misunderstandings between them, how-
ever, family members tended to use a narratives of impairment in autistic
understanding of the social world, whilst autistic participants reflected on
both themselves and their family members as potential causes of misunder-
standings. Such evidence suggests that autistic people do not have a deficit
in metaperception and theory of mind at a fundamental level, and such
framings could be adding to the misperceptions of others, including those in
a close relationship to the autistic person.
Gernsbacher etal. (2017) suggest that there is a disjuncture in how autis-
tic and non-autistic people view themselves in relation to one another, in
that autistic people report fewer ‘autistic traits’ when the reference for
questions is the perception of other autistic people. Heasman and Gillespie
(2019a) studied 30 interactions between autistic adults playing video games
that focused upon intersubjectivity and shared understanding. The findings
from this research suggested a particular kind of social coordination that
occurred between the autistic participants, where there was a tendency to
give detailed descriptions and have a low expectation for a tight coordina-
tion of interaction. In another study by Heasman and Gillespie (2019b), a
video game scenario was used to test metaperception whereby non-autistic
participants were led to believe they were interacting with another player
online to navigate a maze, whilst they were actually interacting with an AI
programme. The AI was given diering diagnostic statuses: autistic, dys-
lexic, or none. When the AI was thought to be autistic, the AI was viewed
as more intelligent but less helpful. Participants also believed that they were
being more helpful but without any behavioural evidence to suggest that
this was so. These studies suggest that stereotyped views of autistic people
are likely to contribute to the double empathy problem, and that there may
also be dierences between people’s perceptions of being helpful and actu-
ally being so to others.
In recent research by Crompton etal. (2020), the transfer of informa-
tion between people were studied across a diusion chain of eight people in
total, similar to a game of ‘telephone’. When there were only autistic par-
ticipants or only non-autistic participants, there was equally good transfer
of information. However, when there was a mixed diusion chain of autistic
and non-autistic people, there was a much greater reduction in information
successfully passed on.
Further research reflects the ‘double empathy problem’ resulting in social
breakdowns within a given group. The dominant form of sociality could
86 Damian E. M. Milton et al.
be suggested to be based on social group identification and dominated
by non-autistic people. The basis of autistic socialisation is interest-based
(Bertilsdotter-Rosqvist 2019). The mismatch of social form and enacting
the necessary mode (interest-led versus social alignment) may hinder the
flow of the group and ultimately result in social exclusion. The analysis of
bloggers’ posts indicate a ‘double empathy problem’ through the dispar-
ity of metaperception and the consequential impact (Welch et al. 2022).
There are real-life applications of the double empathy problem across set-
tings and dimensions, such as in the criminal justice system (Holloway etal.
2020), education (Hummerstone and Parsons 2021), employment and job
interviews (Maras etal. 2021; Remington and Pellicano 2019), and even
the daily dissonance of the autistic lived experience (e.g., impression man-
agement: Cage and Troxell-Whitman 2019; Cook etal. 2021; Schneid and
Raz 2020; understanding the use of gaming: Pavlopoulou etal. 2022) that
may include ‘thwarted belonging’ and lead to suicidality (Cassidy et al.
2018; Pelton etal. 2020), and breakdowns in feelings of social inclusion
and belonging between autistic and non-autistic individuals (Waldock etal.
2021). In a study by Chen etal. (2021), natural peer interactions among six
autistic and six non-autistic young people were observed over a five-month
period to examine peer preferences and real-world social interactions. The
findings showed that the young people preferred within neurotype interac-
tions and that such interactions were more reciprocal and relational (rather
than instrumental), such as sharing thoughts and experiences.
The evidence is thus building to suggest that the theory of mind deficit
theory of autism is indeed ‘partial at best’ with growing support for the
double empathy problem. If autism is not a deficit in social understanding,
then to what does the term autism refer? Atherton etal. (2019) have begun
identifying an autistic theory of mind, proering the desire for transparency
(honesty), developed sense of humour necessitated by the social requirement
to understand non-autistic sensibilities, use of sensory stories in creativity,
and anthropomorphising non-human entities. Alongside the diagnostic
criteria for social interaction and communication is what is often called
‘repetitive behaviours and interests’, also referred to (in all of the authors’
opinion, incorrectly) as a deficit in ‘social imagination’. Wing (1988) states
that ‘social imagination’ deficits present as an inability to authentically
understand other people’s actions, which may be apparent in an autistic
person’s pretend play. Non-autistic people would have begun developing
‘imaginative’ social capabilities through copying their parents’ physical
expressions (i.e., face) at age 2 or 3. To us, it is such dierences in embodied
cognition and sociality which are key to understanding autism and thus
also in understanding the double empathy problem. The socially situated
nature of breakdowns in reciprocity, as suggested by the double empathy
problem, and supported by the growing evidence outlined previously in
this section, tentatively illustrates other factors which may be important in
‘cross- neurotype’ communication. The pervasiveness of discrimination and
Autism and the ‘double empathy problem’ 87
exclusion and breakdowns in communicative reciprocity demonstrate the
impact of the double empathy problem when enacted on a societal level,
and breakdowns in communicative reciprocity on an interpersonal level.
However, with the multitude of factors involved in communication, finding
reconciliation is not a simple task.
The theory that perhaps has been dominant in terms of trying to explain
the repetitive behaviours and interests observed in autistic people has been
that of a deficit in ‘executive functioning’, referring to the ability to process
new information and to remember and retrieve such information to use to
solve problems and plan ahead. Whilst autistic people may show diculties
in some of these areas, an impairment in all of them in all contexts is more
suspect. There is no doubt that the perceptual processing of new informa-
tion is dierent, perhaps heightened or less filtered than for non-autistic peo-
ple. Utilising relevant information from previous experience in the here and
now may also prove dicult at times. Yet what of so-called autistic ‘special
interests’, where such diculties may be less prevalent or reduced? Another
theory looking at such autistic dierences is that of ‘monotropism’ or an
interest model of autism (Murray 1992; Murray etal. 2005; Lawson 2010;
Murray 2018). In this theory, attention is seen as a scarce resource whereby
it is our interests that help to direct it with diering interests being salient
at diering times. To a monotropic mind, fewer interests tend to be aroused
at any one time, and they attract more processing resources, making it more
dicult to engage one’s attention outside of one’s current focus. Disrup-
tions to any such tunnelling allegedly lead to feelings of discombobulation,
with mismatches in salience (Milton 2017) aecting breakdowns in mutual
understanding. Similarly, Bolis etal. (2017) drew upon a combination of
socio-cultural theories and Bayesian accounts to argue that consideration of
psychiatric and neurological dierences need to move beyond individualis-
tic accounts and need to instead be considered as a dynamic interpersonal
mismatch, utilising autism as a case example. This theory is thus for us com-
pletely in unison with that of the double empathy problem. Ai etal. (2022)
also used Bayesian computational modelling to investigate impression man-
agement by autistic and non-autistic people. They suggest that autistic peo-
ple face distinct computational challenges, yet these are inherently socially
situated and transactional, and can also take a toll on autistic people in
terms of social masking.
Empathy, morality, and power
Kennet (2002) suggested that autistic people may lack moral competence
(i.e., those compelled to action by reason are defined as conscious moral
agents), even with those capable of passing false-belief tests and demon-
strating theory of mind, through more subtle deficits in social understand-
ing. Such speculation regarding autistic people and their moral agency
further alienates and disempower autistic ways of being and subjective
88 Damian E. M. Milton et al.
introspective insights, including the production of knowledge that autis-
tic people have about themselves (Milton and Bracher 2013; Milton 2014;
Gillespie-Lynch etal. 2017), yet unfortunately is not uncommon that philo-
sophical texts on this subject continue to perpetuate such ideas (see for
instance, Bollard 2013).
The idea that moral agency is predicated on a symmetry between self
and other and the ability to assume the other’s point of view is a com-
mon belief (Benhabib 1991), yet was criticised by the feminist theorist Iris
Marion Young (1997). In Young’s theorising, it is neither possible nor desir-
able to possess a full understanding of the other (much as was argued previ-
ously in relation to the philosophy of Thomas Nagel) and instead suggests
an approach highlighting ‘asymmetrical reciprocity’. Young argues that
‘equal treatment’ of individual people will not override group-based social
oppressions. Due to this inability to fully ‘empathise’ with the perspective
of another, Young (1997) advocates for a position of humility and ‘wonder’
in interactions with others. In interactions with autistic people, we (authors
DM and KW) would not be the only autistic people to be in full agreement
with such a theoretical position and moral outlook. Combining the theoris-
ing of Young (1997) alongside the double empathy problem, questions are
raised about to what degree moral agency’ is gained through ‘sameness’ and
‘symmetry’ in interactions, with questions of power paramount.
Milton (2016) suggests that the power relationships that can form between
autistic people and psych-professionals who may see their ‘patients’ as lack-
ing in socialisation, empathy, moral competency, and even full humanity
can produce forms of psycho-emotional disablement, constraining not only
what people can do but also what they can be and become. In such interac-
tions, one’s own interpretations of oneself can be undermined by the ‘expert
knowledge’ being applied to them, a case of ‘psychsplaining’. Indeed, those
questioning the moral competencies of autistic people may wish to question
their own.
Another dimension to add in relation to power is that of intersectionality
and how this intersects with power relationships between autistic people
and other social agents in their milieu. As seen in other chapters in this edi-
tion, for example Özyürek (this volume) and Wanner and Pavlenko (this
volume), mismatches in understanding also occur outside of the Anglo-
phone environment, and as Kimberlé Crenshaw (1989) argues, some social
characteristics or identities can compound. As Waldock and Keates (2022)
outline, this can further exacerbate disparities in interactions and lead to
further psycho-emotional disablement and disempowerment.
Implications for working with autistic people
Another significant influence on the theory of the double empathy problem
has been the philosophy of George Herbert Mead (1934) and his distinction
between the ‘me’ and the ‘I’. According to Mead, the ‘me’ is learnt through
Autism and the ‘double empathy problem’ 89
interactions in the social environment, comprised of the attitudes of oth-
ers once internalised. The ‘I’, on the other hand. is a creative response to
such attitudes and holds potential for social change. For Mead (1934), this
relationship constitutes selfhood yet such influences can enter into a ten-
sion between selfhood or identity, and situated lifeworlds. When there are
disparities between how one sees oneself and the views of others, this can
lead to a potential crises in identity formation (Erikson 1968) and social
stigma (Goman 1963), aecting experiences of inclusion, belonging, and
group membership amongst others and in group settings (Waldock etal.
2021), with potential resulting impacts on mental health. Therefore, the
double empathy problem can aect very negatively on those who have lim-
ited power within social groups and society, such as a marginalised minority
– notably, in this case, autistic people. In order to address such issues, it is
therefore a requirement to examine not only micro-scale social interactions,
but also the wider social and systemic contexts within which these interac-
tions occur; for example, a young autistic person seeking an arts career that
is radically othered by social agents, or the networking requirement within
the wider cultural or creative industries (Buckley etal. 2021).
The implications of the double empathy problem for those supporting
autistic people are widespread, and this has been shown in research look-
ing at experiences of accessing health care generally (Doherty etal. 2022)
and mental health care specifically (Mitchell etal. 2021). Mitchell etal.
(2021) lend further support to the argument presented by Milton (2017)
that the misperceptions and subsequent actions of the non-autistic majority
can aect the self-impressions, identity, and mental health of autistic people.
In their investigations of the nature of masking and impression manage-
ment influenced by theory on the double empathy problem, Ai etal. (2022)
highlight the need to change current practice models defined by an ethos
of normative social skills building and the targeting of societal attitudes to
reduce stigma.
In recent years, the concept of the double empathy problem has been
incorporated into numerous established autism training programmes and
support strategies. Strategies that target the social environment and actions
of those around the autistic person have the potential to decrease the poten-
tial negative impact of the double empathy problem on autistic individu-
als. One example is the ATLASS training programme developed by Studio3
based within the ‘low arousal approach’ (first developed by McDonnell
etal. 1994). According to McDonnell (2010), this approach contains four
main elements: decreasing demands made of service users in order to reduce
potential conflict, avoiding potential ‘triggers’ of unwanted stress, avoiding
aggressive non-verbal behaviour by sta, and challenging sta beliefs about
the ‘management of challenging behaviour’. These elements clearly indicate
the social situatedness of social interactions and the responsibility of all
involved. The theory of the double empathy problem links well with such
an approach. Another approach which has integrated the double empathy
90 Damian E. M. Milton et al.
problem is that of the Synergy programme developed by AT-Autism. This
programme takes a broad view of building collaborative communities of
practice, primarily within educational environments.
Amongst the autistic population, the co-occurrence of a range neurologi-
cal conditions is often found, among which a significant minority also have
learning disabilities. Whilst we would reject simplistic characterisations of
mental functioning, there are often debates about the relevance of conceptu-
alisations of autism and support strategies for those with significant learning
disabilities particularly. Yet, if one follows the logic of the double empathy
problem, such issues of mutual misunderstanding are only likely to increase
in social interactions with those with limited verbal ability. Support strate-
gies for autistic people with learning disabilities often strive for increased
social integration and can be highly normative and looking to ‘remediate’
from a deficit-model perspective. Increasingly however, there have been
strategies developed which concentrate more on rapport building and mutu-
ally fulfilling relationships, such as Intensive Interaction (Caldwell 2013)
and parent-mediated communication-focused treatment (PACT) (Green
etal. 2010). Such approaches recognise the significance of relationality as
well as the perpetual making and remaking of social reality through social
agents, acknowledging that the autistic person is an active agent who is not
outside of society and its influence.
Future directions
Whilst the evidence base for the double empathy problem is exponentially
increasing, such research will improve understanding of the processes
through which the problem arises, as well as potential support strategies
to mitigate against its negative impacts. Social disjunctures have a great
impact on quality of life, and work regarding social stigma and mental
health can hopefully be informed by interactive and socially situated con-
ceptualisation of the issues. Another area to explore further would be
the role of culture or diering means of communication on amplifying or
reducing the impact of the double empathy problem. This theorising also
has practical relevance in a host of social situations, importantly (as one
example) regarding the experiences autistic people have of employment
practices. One only needs to think of the job interview scenario to see how
disabling such social misunderstandings and judgements might be. The the-
ory may also be able to illuminate understanding of autistic people who for
one reason or another may need to engage with the criminal justice system.
There is also the risk of potential harm and abuse occurring within the
context of mutual misunderstandings within intimate relationships (Ridout
and Hayward 2019).
Furthermore, the double empathy problem has implications for the
way in which research regarding autism is carried out. Misunderstandings
can easily occur between a researcher and a research participant (Milton
Autism and the ‘double empathy problem’ 91
2014), and need to be carefully considered and mitigated against before
any research takes place. Pellicano etal. (2014), for example, reported the
existence of a mismatch between autistic (and family member) priorities for
research and what kinds of research tends to be funded, wanting more of a
practical focus on how to make an impact on everyday life and wellbeing. It
is of great importance, therefore, for greater engagement of autistic people
with the research process from topic selection to design and interpretation
of findings (Milton and Bracher 2013; Milton 2014; Fletcher-Watson etal.
2019; Waldock and Keates 2022), thus calling for a more participatory pro-
cess. Ultimately, the concept of the double empathy problem challenges the
foundations of framing autism as a ‘social deficit’ located in the individual
autistic person, and forcefully brings forth its broader social and interac-
tional nature.
Note
1 In keeping with other autistic self-advocates, this chapter will refer to ‘autistic
people’ rather than ‘people with autism’. Two of the three authors are autistic
(DM and KW), and asserting our identity and positionality is key to the work we
present.
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... The concept of the double empathy problem describes how this breakdown in mutual understanding is not necessarily the exclusive fault of one person or the other, and as such, it remains an issue for both vested parties to resolve together. However, in our neuronormative society, such communication breakdowns are often framed as one party being at fault (social communication 'deficit') and needing to 'improve' and conform to dominant societal norms rather both parties working to embrace diversity and promote mutual acceptance (Milton, 2012;Milton, Gurbuz, & López, 2022;Gernsbacher & Yergeau, 2019;Crompton et al., 2020;Milton, Waldock, & Keates, 2023;Jellett & Flower, 2023). ...
... Awareness of the double empathy problem (see Milton, 2012;Milton, Gurbuz, & Lopez, 2022;Crompton et al., 2020;Milton, Waldock, & Keates, 2023;Jellett & Flower, 2023;Sterman et al., 2022) is helpful to situate the responsibility for communication breakdowns as emerging from the interaction between the different parties, as opposed to being the sole responsibility of the neurodivergent individual. ...
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While eating disorders have been estimated to affect at least 4% of the Australian population, research demonstrates that feeding difficulties and eating disorders are overrepresented in neurodivergent people, including in autism, ADHD, intellectual disability, giftedness, and Tourette’s disorder. However, despite there being a substantial body of literature spanning decades evidencing links between neurodivergence and eating disorders, awareness among clinicians and researchers of this existing knowledge base is only emerging in Australia. NEDC commissioned Eating Disorders Neurodiversity Australia (EDNA) to write a report, Eating Disorders and Neurodivergence: A Stepped Care Approach, that synthesizes research and lived experience evidence regarding the prevention, early identification and treatment of eating disorders and disordered eating for neurodivergent people. This report aims to encourage collaboration among stakeholders to co-produce and co-design appropriate, effective, culturally valid, and safe neurodiversity-affirming support systems and care pathways. It is designed for the use of a wide range of stakeholders, especially health care professionals (e.g., psychiatrists, psychologists, dietitians, general practitioners, paediatricians, occupational therapists), researchers, academics, educators (e.g., teachers), service managers, and lived experience experts. This report draws on fundamental constructs relating to human rights, bioethics, humanistic psychology, phenomenology, and social justice. It challenges traditional understandings of neurodivergence as pathological. It seeks to destigamtise neurodivergent body awareness and image, feeding, and eating experiences and behaviours. It is a call to action for all eating disorder stakeholders to engage in a radical rethink of how neuronormative feeding and eating practices, which influence research and clinical practice across all levels of eating disorder care, may prove harmful for neurodivergent people.
... Autistic people often connect well across age groups (40-43). Research on the double empathy problem (44,45), has shown that autistic people can often connect with other autistic people more effectively than non-autistic people can (46). Autistic pairs tend to have stronger rapport than mixed-neurotype pairs (47). ...
... First identified in 1943 by psychiatrist Leo Kanner, autism was listed diagnostically by the APA in 1980 and has undergone various diagnostic changes over the years, until 2013 when Asperger's disorder and other related disorders were combined under the domain of autism spectrum disorder (Kring et al., 2016). Accompanying this shift is the development of views that move beyond the deficit-based medical model of the DSM-5 descriptions to position autism as a neurological variability and acknowledge the part that societal norms and assumptions play in stigmatising individuals whose actions originate from different life worlds (Kapp, 2020;Milton et al., 2023). Rather than viewing autistic traits as inherently disordered, these affirming viewpoints emphasise the context and dynamics of two-way communication and recognise that actions originate from different embodied experiences (Milton et al., 2022). ...
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Online Church is still the main way I access church. I have seen amazing growth in how people do church online, which has really encouraged me. In the months after I wrote this, the UK has been in two subsequent lockdowns which has solidified the need for a “Church without walls” which has, in my opinion, dramatically shifted community boundaries and group dynamics. This creative piece still reflects how I feel about online church, with the caveat that I hope churches are harnessing this potential for the future of church and gathering, rather than seeing it as a short term “stop gap” that lacks validity of being a “Church.” To end in the words of Matthew 18:20 (NIV), “For where two or three gather in my name, there am I with them.”