Preferences:

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.  

Download a PDF of this article

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... 

Fri, 08/03/2019 - 10:23

As a professional medical coder, I have seen all types of patient's scenarios, and the importance of awareness of Autism (Asperger's) did not become a matter of concern to me until I was dealing with Autism with my own family member; my husband.

He was and still is masking Autism, or at least that is what I belived at fisrt that he was doing. It is not. It's a mechanism that he is using in order to communicate.

For (16) years I was dealing with an Autistic adult, but I had not related or linked his behavior to Autism or any other mental illness that may exists.

He was communicating well.
He is a very attractive man, seemed confident.
He was functioning and doing what would be expected of him.
Demonstrated exceedingly intelligence and understanding.

Yes, he did exhibit behaviors that were not acceptable or were inappropriate, rude and selfish, but I never attributed it to any mental health.

We separated as soon as we got married due to his behaviors.

He was living with his parents, but then decided to go live on his own.

We meet again.

He is wearing what seems a costume that hides his identity. I did not recognized him at first.
(3) years later, I realized this band member is my husband.

My first thought: "he is hiding in plain site in order to avoid me." I was understanbly, very upset.

I decided to start interacting with him again, and I tried to make conversation with him, but he was rejecting me and he had taken a name, and identity that was not his own, he had recreated everything, his family routines, the routines between us, the routine of everything and he had incorporated it to his performance, he had learned a new skill, he was a vocalist and guitarist at this band that I liked, he seemed very much social with everyone around him, but he could not establish a conversation with me.

He now was communicating with me by switching from identity to identity in order to have a conversation with me. This was on 2015.

What I was seeing and experiencing was a man who was unable to talk to communicate. At times, it seemed as if his intelligence had taken away.
And the reason for that was that he was not understanding what I was requesting from him, at times he seemed as if he did not care or was not interested or he wished I went away and disappear.

So, my conclusion was Disassociate Identity Disorder due to the fact that he was changing from identity to identity and as if he was in a trance, concentrating in being in character aa whoever he would identified with, impersonating me, and other people that we both know. His behaviors and conversation were as as how it happens with those with DID.

So, I started research on that matter.

Later, I found information regarding a link between Dissociative behaviors and Autism (Asperger's).
I heard the stories available from Autistics that feel a type of disassotion. Then, my reserch led me to a better explanation of my husband's behaviors, and that is Depersonalization/Derealization Disorder, which is what I believe happens with those in the Autism Spectrum.

My husband is still having difficulty with understanding that he no longer needs to wear costumes in order to communicate what he wants to me. We are not yet living together as he is unable to associate me in his life as his wife.
He was rejecting me and denying knowing me.
The reason why he does that is because he is reenacting almost every word that I have said to him, and he reenacts everything else around me.
It is very difficult for us to get together for his therapy sessions that I am aiding him with due to the costumes that hide his identity, but he has done very well in cognitive skills, discerning, understanding and complying with my requests.

I have made notations of his every day behaviors and I have recently been recording our encounters which he can use as therapy also and see his own behavior that is still him using someone else's identity in order to communicate with me.

The span of time that it used to take him to understand what I had asked of him or spoke about, and respond was (6) months.
After intake of vitamins that are related to brain health and function he did a great turnout in cognition. After (4) weeks of vitamins intake, the response time was (2) days.

He started modifying his behavior.
He could understand what I was telling him and asking of him. I could explain to him different matters relating to everything and why things were said and done by the people he was imitating.

He started to understand that the behaviors he was replicating were not appropriate or acceptable.

He sees matters black/white, or in a literal way, so I jave adjusted and modified my way of speech and conversation with him, taking into consideration the way he learns and the way he processes information he receives through his senses.

I had to educate myself in regards to what is Autism and I have done extensive research in the matter in order to understand my husband.

I have learned his method of speech.
And he does understand that there are rules of speech and behavior that must be followed on order to have successful relationships with others. He understands that Violence, Abuse of any type, Selfishness, Lies, Deceit and whatever other traits should not be part of any relationship, and he is modifying his behavior accordingly.
He has understood that he is not only repeating words (parrot talk) and behaviors of others (scripting), but he is in character believing at that moment that he is in character, identifying as other humans, the he is that human oe humans that he impersonates and identify with, and he knows and I also know that he is NOT aware that he is doing this after he has done it, and when he comes to reality, which the duration now is within hours, then his anxiety and OCD kicks in as he tries to regain the moment he feels he lost due to his taking in characters and imitating and identifying with other human or humans and want us to do the encounter again.

We have followed the guidance of Professor Mary Temple Grandin (USA), and it has been a success for my husband also.

I do know now that my husband is autistic, that is an illness, not who he is. I am diabetic, but it is not who I am. My husband has been able to work and make it in the technology world, building websites and applications that aid others to communicate and it is all based in the algorithms of his own method of communication. He is a very successful man businesswise. So, I do treat my husband as any other human being, disabled, yes, but able to learn and to fulfill the need that exists for him to comply speech therapy, cognitive therapy, psychological therapies, logical reasoning therapies.
My husband has great potential, so doing everything that needs to be done for him to do better is never a bad thing, and so far he is applying what he is learning not only in a personal level to himself, but also to better his businesses which are a reflection of the man he is and who he is becoming.
Learn new skills, exercise and nutrition.
Reading books aloud, writing by hand.
Vitamins daily intake (D3, B12, B6, Omega3, Alpha Lipoic Acid, Magnesium (daily day/night), Vitamin E (C, to aid vitamin E absorption). Melatonin at night along with Mg Citrate.

Then also, the learning of social skills and interaction is possible.
He is able to maintain eye contact most of the time because he is in character, identifying aa someone else. He is struggling with identifying as self, which I relate to Depersonalization/Derealization Disorder, and so he has that to overcome.
Other than that, I am proud of my husband's continued success.

Tue, 20/08/2019 - 22:16

So you're proud of pathologizing and gaslighting your husband... I hope he can see trough your mask one day and kick you out of his life. He is autistic but you're projecting your narc behaviours on him. Gosh...

bakedbean

Tue, 20/08/2019 - 23:43

I believe this applies to the Deaf community and the gap between Deaf and hearing worlds. There are many similarities between Deaf and Autistic people, which is why Deaf children are diagnosed later than hearing people if they are suspected of being Autistic. This might also be because there are too few specialists who are competent in both Autistic and Deaf culture and fluent in Sign language. I would love to become a specialist because I am autistic and I am also fluent in BSL and have over 20 years experience working with Deaf/deaf and Deaf blind people from all walks of life but I don’t have any medical qualifications. At my sons assessment and my own I was praised for the depth of my knowledge that I had gained in such a short time. Thanks to my ability to hyper focus and absorb information like a sponge only when it’s of special interest to me and my family. 

bakedbean

Wed, 21/08/2019 - 00:01

Just for clarification. Autism is not a disease or mental illness. Masking is achieved in an attempt to fit in as a survival tactic and is done by those who are intelligent enough to realise that they are different and by being different they are at risk and feel unsafe and unacceptable. If you don’t know why you are different then you work hard to try and mimic those around you in an attempt to blend in and fit. It’s human nature to want to belong and be accepted because it’s safer that way. That’s the basic lizard brain function. Masking is detrimental to mental wellbeing and maintaining that mask is hard work. Once you realise why you are different you can learn to accept that difference and realise that by being you there is a filter that sorts out those who accept you for who you are and gets rid of those who just can’t. That’s how I see it. I don’t like everyone and everyone won’t like me and that’s ok. I’m ok because I have a strong moral compass and what I do always comes from a good place. If others misinterpret my intentions then I will try to find out what went wrong and try to put it right but many NT folk don’t like that and see it as hard work. I see it as a transaction that has crossed and become confused and needs unravelling so it doesn’t happen again and we can move forward. I like to understand before I can move on. My brain will just keep analysing until it’s solved and I’ve learnt to accept that and go with it. I struggle to do basic things but complex tasks are easy for me and that’s ok. I am dropping the masks that are detrimental to my wellbeing and keeping the ones that help. When I’ve had enough I don’t push through I just say I’m tired and need to go home. If someone upsets me I tell them and explain why and I try to find out what they meant if I misunderstood. Communication is more complex than many give it credit for. It’s a two way street. Two minds with abstract thoughts that have to travel through time and space some how and arrive in the other’s mind in the way the creator intended. That’s pretty complex to even consider that. Then on top of that you have to throw in the differences each person has, their experiences and beliefs and so on...... all that influences the way a message is interpreted. We can choose to believe what we think it is or we can ask for clarification to be sure it’s what the creator and sender intended just like we would hope that what we communicate is received as we intended. Communication is key to society as a whole. No matter what walk of life, no matter what colour or culture or belief. We are all valid and we all want to be valued, heard and loved unconditionally. If you can’t be kind- be quiet.