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The double empathy problem

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.  

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Author: Dr Damian Milton

The double empathy problem

“...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, p.14).

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.

References

Donna Williams (1996), Autism: an inside-out approach. An innovative look at the 'mechanics' of 'autism' and its developmental 'cousins'. Jessica Kingsley Publishers

Further reading

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.

Date added: 2 March 2018

Comments

Tue, 13/03/2018 - 11:57

"From the earliest written accounts of autistic people one can see numerous mentions of this lack of understanding from others." Does this double empathy issue exist in relation to any groups who have a weak understanding of the needs/strengths/skills of others?

Thu, 15/03/2018 - 21:22

Hi Louise, I've often thought about this. For example I can assess dyslexics and make recommendations but have no idea what it actually feels like in a literate society day to day. I can only sympathise by listening to accounts by dyslexic people.

Luke Beardon talks about cross-neurological empathy which I hope will be explored further in research. I think double empathy has greater relevance to autism though, because autistic individuals have been misunderstood as having a "lack of empathy".

Paul Wady

Thu, 22/03/2018 - 12:44

Damian's insightful explanation, is clearly a phenomena universal to all humanity that tries to communicate with others not of its kind.  What is diplomatically left out here is that often, agenda's are present such as a rejection and even hatred of autistic natures.

A deliberate misconstruing to the point of making insensible, of autistic people.  Seeing us as disordered and mentally incompetent for example by picking on our failing and weaknesses in how we relate ourselves and just plain talk.  'Looking a bit simple' or 'slow'.  The sight of people who appear less able has always prompted contempt amongst some.  This is surely a global phenomena.

Let us all be more aware of our own responses to others, and try to have compassion and maturity.

 

 

AutismAdvocate

Fri, 23/03/2018 - 18:50

"From the position of the non-autistic onlooker, autistic people can seem to have an impaired understanding of social life and other people."

That is what the diagnostic criteria are built around on the social communication side however.  Someone has to be impaired to receive a diagnosis.  Non-autistic people (ordinarily) function without interventions and supports and do not need to be diagnosed as being typical or "normal".

Brain anomalies have been identified in autistics.  So to say that actually autistics are not impaired and it's just how non-autistics are viewing them, would not be correct.

The spikey profile so often present in an autistic person, means that whilst they are impaired in some areas, they may have talents in other areas to compensate, it's not a question of society saying autistics have no value.  So it's not a judgement, to say they are impaired, it's an acknowledgement of their functioning difficulties.  Yes we need there to be reasonable adjustments and awareness, this is vital and would ameliorate some of the difficulties autistics face.

Also, what is being discussed above, appears to be more about the "high-functioning" end of the autistic spectrum.  You cannot say a non-verbal person who struggles to communicate is not impaired, even if they found an alternative method to communicate such as through use of technology.  If they were not impaired they would not need those assistive technologies.

It's hard to find an analogy with another condition, but it seems what is being said here is that autistics are being found at fault in some way.  It's almost akin to saying that someone with e.g. quadraplegia is not disabled, it's just how society is looking at them and they are wrong to do so.  But if you took away wheelchairs and all technology allowing people with any such impairment to cope in society, they would become helpless and entirely dependent on the assistance of others, so they are disabled.  That doesn't mean disabled people are of any less value than anyone else, but at the basic level of disability, impairment, or however you want to term it, you cannot avoid the facts.

So sticking with the quadraplegic example, you wouldn't say that people without that disability have equal 'blame' for the difficulty a quadraplegic faces because they don't understand what it's like to be quadraplegic.

"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."

But autistic people can have flat affect which makes it difficult for non-autistics to gauge their emotions and meaning.  Anyone behaving atypically is going to be puzzling to others in the majority who are not aware of their condition or why they are presenting differently.  People can fear difference.  They might misconstrue the behaviours of an autistic as possibly someone with an unpredictable and potentially aggressive psychiatric disorder.  They might be confused and go into self-preservation mode.

So we need awareness, we need acceptance of difference.  But we can't deny the disabling nature of ASD.  Celebrating autistic talent and skills is great and should be done.  But every autistic has their own unique experience.  I speak as an autistic individual.

Wed, 05/09/2018 - 08:51

I believe that we will always see problems if we expect others to see the world as we see it because there is self-interest in not doing so: exclusion and negative-differentiation is a form of racism which requires everyone to fully understanding of autism to begin to be addressed.

Recent papers on the negativity towards autistic peers by NT compatriots has a wider implication for employment; access to justice - both civil and criminal - and fair treatment by the benefits system. A particular problem exists in employment situations. While a manager may be see the benefits of an autistic employee or participant and be supportive of them, the subjective unpopularity of that person within a team or other collective body can result in a very unpleasant situation such that the position becomes untenable for the autistic person and the business in terms that person's presence regardless of the work performance.

Understanding and representation of autism is postcode dependent in the UK and this is partially due to NHS 'Patient Choice' being ignored and being allowed to be so by all of the bodies that should be enforcing it. We need to actively signpost to assessment centres of excellence and advocacy and insist that they be accessible: the result will be far better understanding by osmosis and dissemination from the correctly assessed and informed individuals...