At a recent training event, when discussing the diagnostic history and neurological modelling of autism, one of the trainees mentioned ‘the Double Empathy Problem’ as described by Dr Damian Milton (see below). The name rang a bell with me, as I had had some contact with Damian a few years ago about the research body supporting Intensive Interaction – which he was familiar with, and if my memory serves me right, personally supportive of.
To save myself some ‘Blogging’ time, I thought that I would simply re-post Damian’s article (from the National Autism Society’s website) for others to contemplate. But I think that he is describing something quite profound here; and it fits with my own views about the social construction of the socially disabling aspect of the autistic condition i.e. that a social environment can either be more or less socially enabling (or socially ‘marginalising’ i.e. disabling) for a person with autism, depending on the empathetic and responsive nature (or not) of the social ecology immediately surrounding that person.
Anyway, here’s the article: ‘The double empathy problem‘ by Dr Damian Milton published on 02 March 2018 (at: https://www.autism.org.uk/advice-and-guidance/professional-practice/double-empathy)
Dr Damian Milton is an author, consultant, Lecturer in Intellectual and Developmental Disability at Tizard Centre, University of Kent and chair of the Participatory Autism Research Collective (PARC). Here Damian discusses the theory of double empathy and the implications for practice.
“…right from the start, from the time someone came up with the word ‘autism’, the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced.”
(Donna Williams, 1996)
Alongside ‘restrictive interests and behaviours’, the diagnostic criteria state that autism can be defined by deficits in social interaction and communication. From the position of the non-autistic onlooker, autistic people can seem to have an impaired understanding of social life and other people. Such ideas are embedded within dominant psychological theories that attempt to explain autism as pathology, a deviance from normal development and cognitive functioning. Prevalent amongst these is the concept that autistic people have impaired ‘theory of mind’ – the ability to imagine the thoughts and feelings of others, in order to comprehend and predict their behaviour (also called ‘mind-reading’ and ‘mentalising’).
Whilst it is true that autistic people can struggle to process and understand the intentions of others within social interactions, when one listens to the accounts of autistic people, one could say such problems are in both directions. Theory of autistic minds often seem to leave a lot to be desired, and we would not need organisations like the National Autistic Society trying to spread awareness and understanding of autism if it were so easy to empathise with autistic ways of perceiving and being in the world. From the earliest written accounts of autistic people one can see numerous mentions of this lack of understanding from others. It is this issue of empathy problems between autistic and non-autistic people being mutual in character that led to the development of the ‘double empathy problem’ as a theory.
Theory of double empathy
Simply put, the theory of the double empathy problem suggests that when people with very different experiences of the world interact with one another, they will struggle to empathise with each other. This is likely to be exacerbated through differences in language use and comprehension. I first started to publish theoretical accounts of this issue in the early 2010s, yet similar ideas can be found in the work of Luke Beardon regarding ‘cross-neurological theory of mind’ and in that of the philosopher Ian Hacking.
More recently research by Elizabeth Sheppard and team at the University of Nottingham, Brett Heasman at the London School of Economics, and Noah Sasson at the University of Texas at Dallas, have shown that in experimental conditions, non-autistic people struggled to read the emotions of autistic participants, or form negative first impressions of autistic people. Such evidence would suggest that the dominant psychological theories of autism are partial explanations at best.
According to the theory of the ‘double empathy problem’, these issues are not due to autistic cognition alone, but a breakdown in reciprocity and mutual understanding that can happen between people with very differing ways of experiencing the world. If one has ever experienced a conversation with someone who one does not share a first language with, or even an interest in the topic of a conversation, one may experience something similar (albeit probably briefly).
This theory would also suggest that those with similar experiences are more likely to form connections and a level of understanding, which has ramifications in regard to autistic people being able to meet one another.
Putting theory into practice
The scope of the theory has broad ramifications for practice. The theory not only takes into account differing cognition and interests, but the social context within which interactions take place. The theory has the potential to radically shift how we see autism and therefore autistic people. In doing so, there are also ramifications for practice and what one is trying to ‘intervene’ with. Attempts to reduce autistic ‘symptomology’ may not lead to increased wellbeing, and the lack of understanding and resultant stigma felt by autistic people in social environments can then impact upon mental health, employment, accessing education and services, and experiences of the criminal justice system. In short the downside of the double empathy problem is minorities being socially marginalised.
The concept of the double empathy problem has already influenced training programmes for the National Autistic Society and the ATLASS training run by Studio3 and the Synergy program developed by AT-Autism. Further work is needed to evaluate these programs, looking at both the perspectives of autistic people and practitioners. Expanding research into this area would potentially improve our understanding, and lead to more respectful interventions that can ameliorate the negative social consequences that can arise from the double empathy problem.
- Dr Damian Milton (2017), A mismatch of salience. Pavilion
- Milton, D. (2012) On the Ontological Status of Autism: the ‘Double Empathy Problem’. Disability and Society. Vol. 27(6): 883-887.
One thought on “The ‘double empathy problem’”
I think this is a great framing of the potential breakdown and also an explanation of what occurs with reciprocity is bridged with better understanding and empathy.
I hope that the shift in focus for autistic people, which includes room for pride and a non-apologetic or “not needing fixing” approach, will find a place for people with learning disabilities (intellectual disability in Australia).
We’ve still so far to go in embracing a view where partners share a responsibility to meet people in their legitimate place, as opposed to a continual hierarchical view that more skills (or different skills) mean a better life, or the person being obligated to learn more skills to meet the people who support them.
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