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On the ontological status of autism: The 'double empathy problem'

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Damian Milton at University of Kent
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Abstract

In recent decades there has been much debate over the ontological status of autism and other neurological ‘disorders', diagnosed by behavioural indicators, and theorised primarily within the field of cognitive neuroscience and psychological paradigms. Such cognitive-behavioural discourses abstain from acknowledging the universal issue of relationality and interaction in the formation of a contested and constantly reconstructed social reality, produced through the agency of its ‘actors'. The nature of these contested interactions will be explored in this current issues piece through the use of the term the ‘double empathy problem', and how such a rendition produces a critique of autism being defined as a deficit in ‘theory of mind', re-framing such issues as a question of reciprocity and mutuality. In keeping with other autistic self-advocates, this piece will refer to ‘autistic people', and ‘those who identify as on the autism spectrum', rather than ‘people with autism'.
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CURRENT ISSUES
On the Ontological Status of Autism: the ‘Double Empathy Problem’.
Damian E M Milton*
University of Birmingham
(Received 8th June 2012; final version received xxxxxxx)
Abstract
In recent decades there has been much debate over the ontological status of autism and other
neurological ‘disorders’, diagnosed by behavioural indicators, and theorised primarily
within the field of cognitive neuroscience and psychological paradigms. Such cognitive-
behavioural discourses abstain from acknowledging the universal issue of relationality and
interaction in the formation of a contested and constantly reconstructed social reality,
produced through the agency of its ‘actors’ (Garfinkel, 1967). The nature of these contested
interactions will be explored in this current issues piece through the use of the term the
‘double empathy problem’ (Milton 2011a), and how such a rendition produces a critique of
autism being defined as a deficit in ‘theory of mind’, re-framing such issues as a question of
reciprocity and mutuality. In keeping with other autistic self-advocates, this piece will refer
to ‘autistic people’, and ‘those who identify as on the autism spectrum’, rather than ‘people
with autism’ (Sinclair, 1993).
Introduction
Socrates: ...Can you point out any compelling rhetorical reason why he should have put his
arguments together in the order that he has?
Phaedrus: You do me too much honour if you suppose that I am capable of divining his
motives so exactly. (Plato, 1973: 78).
In recent decades there has been much debate over the ontological status of autism and other
neurological ‘disorders’, diagnosed by behavioural indicators, and theorised primarily within
the field of cognitive neuroscience and psychological paradigms. The triad of dominant
theories that include: theory of mind deficit, executive dysfunction, and weak central
Corresponding author. Email: damianmilton.sociology@yahoo.com
coherence theory, as well as behavioural diagnosis and behavioural psychological
intervention paradigms; all position autism as a neurological disorder, a pathological
deviance from expected functional stages of development. This approach when applied to the
education of those diagnosed becomes a ‘treatment program’ of modifying the ‘autistic
person’ as ‘best one can’ to fit in with the mainstream culture of society. Such views are
informed by research that champions the use of the randomised controlled trial, yet discounts
the subjective experiences of those who identify as being on the autism spectrum themselves
as worthy of rigorous academic study. Such cognitive-behavioural discourses abstain from
acknowledging the universal issue of relationality and interaction in the formation of a
contested and constantly reconstructed social reality, produced through the agency of its
‘actors’. The nature of these contested interactions will be explored in this current issues
piece through the use of the term the ‘double empathy problem’ (Milton 2011a), and how
such a rendition produces a critique of autism being defined as a deficit in ‘theory of mind’
and social interaction, re-framing such issues as a question of reciprocity and mutuality.
Assumptions of social relationality
The inability to ‘read’ the subtext of a social situation is often deemed to be a major feature
of those diagnosed as being on the autism spectrum, yet it is suggested here that social
subtext is never fully given as a set of a priori circumstances, but is actively constructed by
social agents engaged in material and mental production. There is a tendency in the
application of positivist methodologies in cognitive psychology and science to incorrectly
assume that there is a set of definable social norms and rules that exist for people to follow.
This ideology is also supported more explicitly by functionalist sociologists. This is not the
philosophy propounded by those of a phenomenological or ethnomethodological persuasion
however. The ‘theory of mind’ and ‘empathy’ so lauded in normative psychological models
of human interaction, refers to the ability a ‘neuro-typical’ (NT) individual has to assume
understandings of the mental states and motives of other people. When such ‘empathy’ is
applied toward an ‘autistic person’ however, it is often wildly inaccurate in its measure. Such
attempts are often felt as invasive, imposing and threatening by an ‘autistic person’,
especially when protestations to the contrary are ignored by the NT doing the ‘empathising’.
The ‘double empathy problem’: A disjuncture in reciprocity between two differently disposed
social actors which becomes more marked the wider the disjuncture in dispositional
perceptions of the lifeworld - perceived as a breach in the 'natural attitude' of what
constitutes 'social reality' for ‘neuro-typical’ people and yet an everyday and often traumatic
experience for ‘autistic people’.
To expand on the above definition, the ‘double empathy problem’ refers to a breach in the
‘natural attitude’ that occurs between people of different dispositional outlooks and personal
conceptual understandings when attempts are made to communicate meaning. In a sense it is
a 'double problem' as both people experience it, and so it is not a singular problem located in
any one person. Rather, it is based in the social interaction between two differently disposed
social actors, the disjuncture being more severe for the non-autistic disposition as it is
experienced as unusual, while for the ‘autistic person’ it is a common experience (Milton,
2011b). The ‘empathy’ problem being a ‘two-way street’ has been mentioned by both
‘autistic writers’ (Sinclair, 1993) and NT writers alike (Hacking, 2009), yet despite such
protestations, the ‘lack of theory of mind’ myth persists.
The stigma of being ‘othered’ and the normalisation agenda
To be defined as abnormal is potentially to be seen as 'pathological' in some way and to be
socially stigmatised, shunned, and sanctioned. Then if there is a breakdown in interaction, or
indeed a failed attempt to impose upon or align toward expressions of meaning, than a person
who sees their interactions as 'normal' and 'correct' can denigrate those who act or are
perceived of as ‘different’ (Tajfel and Turner, 1979). If one can apply a label on the ‘other’
locating the problem in them, it also resolves the applier of the label’s ‘natural attitude’ of
responsibility in their own perceptions and the breach is healed perceptually, but not for the
person who has been 'othered' (Said, 1978).
Internalised oppression and psycho-emotional disablement
The imposition of one’s views upon another and the subsequent internalisation of this view
can be seen to be a form of internalised oppression, where the negative connotations of the
normative model of pathological difference becomes a self-fulfilling prophecy (Becker,
1963), leading to a self-imposed psycho-emotional disablement (Reeve, 2011). For those who
resist such self-identifications and attempts to normalise, however ‘well intentioned’, are
experienced as an 'invasion' of the ‘autistic’ ‘lifeworld’ by people wanting to modify one’s
behaviour to suit their purposes and not one’s own (Milton and Lm, 2012).
Autism and knowledge production
Although compared to many categorisations of disability, autism has attained a great deal
more public attention and that one could say that the label has become a fetishised
commodity and even a global industry (Mallet, 2011), yet it is an industry that silences the
autistic voice from any participation, other than in the form of a tokenistic gesture. Therefore,
far from owning the means of mental production about one’s own culture, the ‘autistic
individual’ becomes the 'product' of the industry, the 'thing' that is 'intervened' with. 'Services'
are provided for the carer's of ‘autistic people’ with often little attention given to the needs of
the ‘autistic person’ as they perceive them to be. Autism is not just an ‘invisible disability’ to
many in terms of a behavioural definition, the ‘autistic voice’ is made ‘invisible’ within the
current culture of how knowledge produced about ‘autistic people’ often excludes
empowered ‘autistic advocates’ from such processes.
Implications for service providers
There is a spectrum in theory and practice more generally regarding service provision for
‘autistic people’, between at one end those adhering to techniques of behavioural
modification, so that children are socialised into what are deemed appropriate behaviours of
socially functional future roles. At the other extreme of this spectrum is an ethos of
interactive mutuality concerned with the empowerment of individuals and communities, and
where dominance and imposition of authority is seen as ‘dysfunctional’. Expressions of these
extremes could be said to be found more frequently in discourses regarding best educational
practice for ‘autistic people’, ranging from the efforts of the Lovaas model of Applied
Behavioural Analysis, through to child-focused and democratic educational ideological
preferences. These narratives and practices can be said to be embedded within the wider
discursive debate that exists between the medical and social models of disability as played
out in the field of autism. It is the view of this author that there is an increasing complacency
around the idea that lead professionals and practitioners have a good understanding of what
'good autism practice' entails, for me this is an ongoing imperfect process of interaction and
should never be seen as a given.
Conclusion
The lack of 'social insight' seen to be manifested in the actions of ‘autistic people’ is both
biologically and socially derived, and yet is also historically and culturally situated in
discourse. The experience of a lack of realisation or the lack of insight is a very common one
in social interactions of many varieties however, and leads to the ‘double empathy problem’
between differently disposed social actors. Such divergences of perception are inevitable to a
greater or lesser extent. So it is true that autistic people often lack insight about NT
perceptions and culture, yet it is equally the case that NT people lack insight into the minds
and culture of ‘autistic people’, or that they may lack social insight in other social situations
due to an easily repaired natural attitude, and the aligning tendencies of their peers. One
could say that many autistic people have indeed gained a greater level of insight into NT
society and mores than vice versa, perhaps due to the need to survive and potentially thrive in
a NT culture. Conversely, the NT person has no pertinent personal requirement to understand
the mind of the ‘autistic person’ unless closely related socially in some way.
In analysing the interactions that ‘autistic people’ have with the wider population, it is easy to
problematise the definition of autism as a ‘social deficit’ located within an individual’s mind.
Differences in neurology may well produce differences in sociality, but not a ‘social deficit’
as compared to an idealised normative view of social reality. Such definitions may help to
signpost disability support services, but they are no way of defining autism in any kind of
holistic sense.
Socrates: But suppose the words used are ‘just’ and ‘good’. Don’t we then go each his own
way, and find ourselves in disagreement with ourselves as well as with each other?
Phaedrus: Undoubtedly. (Plato, 1973: 77).
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Filling in the gaps", a micro-sociological analysis of autism
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  • D Milton
Milton, D. (2011b) '"Filling in the gaps", a micro-sociological analysis of autism'.
They judge me on the bit they can see …': How normative prac-tices have led to the psycho-emotional disablement of autistic people. Critical Disability Discourse in review. Plato. 1973. Phaedrus and Letters VII and VIII
  • Jan 2012
  • D Milton
  • Lm
Milton, D. and Lm. 2012. 'They judge me on the bit they can see …': How normative prac-tices have led to the psycho-emotional disablement of autistic people. Critical Disability Discourse in review. Plato. 1973. Phaedrus and Letters VII and VIII. Trans. W. Hamilton. London: Penguin.
Ableism within disability studies: The myth of the reliable and contained body
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  • D Reeve
Reeve, D. (2011) 'Ableism within disability studies: The myth of the reliable and contained body.' Theorising Normalcy and the Mundane, 2 nd International Conference. Manchester Metropolitan University.
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  • Oct 2011
  • 14-15
  • R Mallet
Mallet, R. 2011. Buying new normals?: When impairment categories become commodities. Paper presented at the Theorising Normalcy and the Mundane 2nd International Confer-ence, September 14–15, in Manchester Metropolitan University, UK.