The Middletown Centre for Autism Podcast
The Middletown Podcast features interviews with leading thinkers and practitioners across the autistic and autism community. Conversations are autism-affirming and neurodiversity-informed with a focus on the lived experience and knowledge of our community. Episodes highlight issues impacting autistic people and we share ideas for family members and school staff who are providing support.
The Middletown Centre for Autism Podcast
Double Empathy with Dr Damian Milton
Double Empathy is a theory that many believe is central to understanding autistic experience. In this episode we chat to Dr Damian Milton, the autistic researcher and theorist who developed the theory. We discuss what Double Empathy means for other theories of autism and how it can shape practical supports.
Welcome to the Middletown Podcast. I'm Kat Hughes, I'm a researcher at Middletown and I'm also autistic. In this episode we're talking about a topic that is so important in relation to how we understand autistic experience. I chat to Dr Damian Milton, an autistic autism researcher and theorist, who developed the idea of the double empathy problem. To my mind, if someone wants to understand the autistic people that they support, that they work with, that they love, then getting to grips with the double empathy problem is the best place to start. I really enjoyed having a chance to pick Damien's brain. I hope you enjoy our chat, Damien. Thank you so much for joining us on the podcast.
Speaker 2:I'm really pleased to chat to you because I think double empathy is something that I talk about constantly almost, and I think almost every podcast that I've recorded double empathy has come up at some point, so I always feel slightly fraudulent talking about it. They'll be like you know it much better than I do and I'd be like I should have your perspective on it if it's going to be talked about. So, to start with, I'd love if you could explain exactly what the double empathy problem is.
Speaker 1:Well, it's reframing the kind of social interaction difficulties that are often ascribed to autistic people as a more mutual and social issue.
Speaker 1:And really the crux of it is two people with very different ways of being in the world or perceiving the world are going to potentially struggle to communicate and interact with one another and emphasize with one another's experiences, and part of that is around communication, but part of it is the lived experience itself.
Speaker 1:So, for example, I have no idea what it would really be like to be a wheelchair user, and a brief simulation activity is not going to give me that experience. And so to what extent can I truly empathize with what it's like? It's a kind of projection if I was to do that and can be way off the mark rather than emphasising and I think this kind of mismatch is what's happening between autistic and non-autistic ways of being and viewing the world viewing the world, but the difference there is autistic people traditionally have been seen as the case may be, and I think this is all the burden onto autistic people to do all the work really, which is somewhat unfair. So I think seeing things more as a mutual problem, it's social interaction involves more than one person and a mutual effort is for me far more productive.
Speaker 2:Definitely, and I know for myself because I got my diagnosis as an adult and I'd felt, you know, for my whole life up until that point I'd felt like I just wasn't very good at being a human. And then when I got my diagnosis I was like, okay, I have this reason why I'm not good at being a human, so it wasn't kind of a positive experience to get that diagnosis.
Speaker 1:But then it was when I learned about double empathy that I suddenly shifted how I understood my own experience as much as other people's experience of me and with me, and so I think it's so fundamental as a theory in terms of how we can sort of cut ourselves some slack and understand ourselves, as much as how other people can understand autistic people it shifts a lot of that blame game away from oneself and, as you say it, one in can internalize a lot of that because one's told one's a failure at being social or acting normal, whatever it may be acting appropriately or successfully enough to get you where you want to go, and all this kind of thing, like the job interview situation and the kind of judgments that people have if you do not perform in expected ways. And I think as a theory it does try and teach people to cut us some slack, but also ourselves.
Speaker 2:Yeah, absolutely. And where did the idea originate from?
Speaker 1:Well, there is a mixture of factors. I mean largely my own personal experience through many years as an undiagnosed autistic person, and academically I initially went into sociology and dabbled in philosophy, trying to work things out in terms of my own position in the world and other people, and I thought I'd analyze this to death to try and figure it out, as one does um and uh. So many of the theorists and philosophers that I came across, um, I started piecing the patterns together and pieces together, and so I had a whole elaborate philosophy many years ago before I really came across autism as a concept. Even so, in the 1990s I had a term which was the human spectrum of dispositional diversity, which was a hell of a mouthful of academic jargon which is a hell of a mouthful of academic jargon, but it was really getting at this point of differences between people and how some of those get positioned as mental outsiders in others society. I was influenced somewhat by those critical in mental health kind of area academically, and some oddball sociologists and philosophers who've really analysed social interaction and things. And then my son was born in 2002 and was diagnosed early in 2005 at the age of two, so very young, and so I started researching autism in depth in the mid-2000s and very early on, came across the work of Simon Baron Cohen and others and a whole theory of mind hypothesis around autism. And applying this to my son and myself my own experience I was like, well, they've got it all wrong or they're missing a huge chunk of the picture here, and surely they understand social interaction social and interactive. And so at the time I was attending a parent and a lot of these ideas were floating around and these parents trying to understand their children, parents, how I viewed the situation, and so I came up with this phrase, which was not the most academically on point in some ways, but it was quite accessible, I thought. So I just said, oh, this is a double empathy problem, it's a problem for both parties, and so the phrase came from trying to get this different way of viewing the issue across the parents' room, and then it kind of seemed very useful in that accessible way. So there's all this academic gubbins in my head swimming around and various factors and influences, so the nuances are quite in-depth, but the basic point could be explained quite simply what the issue was. And then I started presenting about it, wrote a paper in 2012, published in an academic journal about. It, wrote a paper 2012 um published in an academic journal. Um and just um, and From then on it's kind of gathered a lot of comments.
Speaker 1:That's where it originated from. I should say at the time that I was not the only person talking about these issues. I was perhaps the first to fully theorise it academically. However, going back to the earliest autobiographical text, there's mentions of this kind of two-way issue Jim Sinclair, donna Williams, mel Baggs. In the 1990s and in the 2000s, there was a blog by Rachel Cohen-Rottenberg Autistic Woman, I'm sure. Dawn Price went to talk about these issues, and then writers like Olga Bogdashina, luke Bearden, so a number of people were recognising this interactive two-way issue and so I said, well, yes, we use this theorist and that theorist put it together, it is and um, it was.
Speaker 1:After that, empirical research, studies, experiments around this kind of thing started to come out around 2014 onwards.
Speaker 1:So before then it was all personal accounts, qualitative research, that kind of thing.
Speaker 1:Talk about these issues philosophically.
Speaker 1:The research really began in 2014-2016, that sort of era and at that time much of the original research that could be related to this topic didn't know of my work.
Speaker 1:So there was various academic psychologists, a group at the Uni of Nottingham, danny Rofer, liz Sheppard and others, and various groups, noah Sasson, in the States, dallas and so you had various groups of academics started to do bits of work, looking at things more interactively, and so as soon as any of these pieces of work were being published, I would sort of message the author and say did you know? I've been writing about this kind of thing and it was partly through that effort that academically there was a kind of coming together of people interested in the topic and doing work in the area interested in the topic and doing work in the area and so that led on to sharing of ideas, symposia, conferences, events dedicated just to the double empathy problem as an issue. For a couple of years back we had a short series funded by the British Psychological Society and it was purely on the topic. So it's come a long way.
Speaker 2:And you mentioned there the sort of like the Simon Barncow and Pe theory of mind side of things. Are there ideas that have been sort of foundational in terms of how people understood autism in the past, that you feel are kind of shaken by the concept of double empathy?
Speaker 1:Well, primarily the theory of mind issues, and Simon Baron Cohen has said that he sees them as compatible and in one sense, yes, autistic people can struggle with cognitive theory of mind issues with non-autistic people, but he's admitted himself, when I've asked him, that the same can be true. Um, and so it's true. This is much bigger a problem for autistic people navigating social life if you're in a distinct minority and society's set up for normative social performance and so on, but it's not exactly helping autistic people for the expectation to then be on them in terms of the support strategies, the intervention, and so what it's led to is all kinds of social skills programs which autistic people will tell you have not always been in their best interest in terms of outcomes and ways of working and hasn't accepted their intrinsic ways of being and so some practices I would say being quite ableist, quite unintentionally no doubt, but it's caused as much harm as good. And so we need and I think this is slowly coming into life more, it's, a more accepting way of around people's diverse ways of being and less social expectations on how one presents in various contexts. There's still a long way to go and I think things like job specs are an obvious example why a computer engineer needs to be an enthusiastic team player.
Speaker 1:I'm not sure Could this be worded in a different way? Yeah, these issues, I think, practically are a lot more difficult to deal with.
Speaker 2:And did you find that there was pushback when you were sort of initially publishing around the theory, just because it does make people shift their perspective or ask people to shift their perspective quite a lot.
Speaker 1:Not really at first. It grew quite steadily and really quite popular with all stakeholder groups. To find something of value and that's something that I've felt quite proud of really is that parents, practitioners, teachers, healthcare workers and especially autistic people have all found this concept to be helpful. And the pushback, if anything, has come more recently and this is partly because of the gathering, massive work around the area and I guess it's perhaps starting to shape the foundations at a bigger level in terms of academic status, I'm not sure or affecting people in different ways. So there was recently an article published being critical of the theory for not being precise enough in its terms and the mechanisms involved. This was around psychology theory around the problem, and a lot of the psychologists working in this area have been exploring these kind of very issues, and so I thought it was a bit unfair on those psychologists, considering that it's not much more than 10 years old in a published journal, and the same issues can be applied to other autism series which are much older sort of three, four times as old.
Speaker 1:So there's a lot of issues in the theory of mind.
Speaker 1:Research issues are quite specific to psychology and the kind of experiments that are being done in that area and to me the defining of the issue is more of a sociological one, in a sense, for me and where I was coming from initially, because whatever the difference is cognitively between two human beings, then that's going to potentially cause a dispositional difference in terms of empathy.
Speaker 1:So empathizing with someone with advanced dementia, say, or you know, whatever the cognitive difference is in an autistic person to a non-autistic, we assume there's some kind of difference. This is going to potentially cause a double MC problem. They're interacting how they perceive and experience the world. So it's quite a simple thing. So I'm not sure why there's beginning to be a push back now, other than perhaps it's becoming popular and other areas are becoming less so. Yeah, as a consequence. So one of the areas the critics were based in was what they call a compensation strategy in social interaction, which is a problematic way of framing autistic ways of acting socially, and so I think there's a bit of a clash in where these people's work is being framed and how a lot of the double empathy work is framed.
Speaker 1:So there seems to be some pushback at the moment. But to me that's just a challenge to do as good a work as possible in the area, not to, uh, disregard it yeah, exactly yeah, and I I agree.
Speaker 2:I think it is probably, if anything, it's a sign that it's it's gained a level of sort of trust and reliability where people are suddenly having to rethink how they've approached things in the past.
Speaker 1:And it's unusual in the autism field for theories to get that widespread resin.
Speaker 2:It's there for a reason, I believe, and we should take that seriously do you think that there's, or what do you think the main difference is? I'm assuming there's a difference between theories of autism and autistic experience that are developed by autistic people compared to those that are developed by non-autistic people, who are maybe more on the sort of observing side of things.
Speaker 1:I think there's value in different perspectives, especially coming together. But Well, I was saying with the double empathy problem, in terms of that lived experience, if one hasn't got that experience, then it's pretty hard to theorize about it purely through observation or secondhand knowledge of experience. It's not impossible. But there's a key ingredient there which is essentially missing, so part of the picture, as it were. I think there's a danger as well, though, that one could face one's understanding of autism on one's own experience too much and not the experience of other autistic people. And so and nobody speaks for everyone, as everyone should know, although we're probably all being accused of that occasionally it's that I think there's also an innate respect for autistic ways of being, so the series tend to be more neutrally worded rather than negative deficit model and so on.
Speaker 1:This is just is rather than it's a bad pathology from the outset. It's just a differenceology, a death fear from the outset. It's just a difference to be recognized and understood, accommodated, social and the passion for the subject area as well. So I think a lot of the strongest work around autism theory has come from autistic people. At best they're working models that may be helpful for some people. I think things like monotropism theory. Work with Diana Murray especially, and Gwen Lawson and so on has been very powerful Michelle Dawson's work in sensory perception and non-verbal intelligence, things like that. There's just a dedication to the work and and a helpfulness to these theories and ideas, which one doesn't generally find in the psychological theories that have dominated in the past.
Speaker 2:Yeah, and I think, as you say, there's sort of an increasing interest and recognition that co-production and collaboration is essential. So I think bringing those ideas and those approaches together can be really helpful as well.
Speaker 1:I've long been a champion of participatory research. As a sociologist, so long before I was involved in the autism world, I was into participatory work, into participatory work, and it's interesting how certain disciplines have always had traditions of looking at these areas. So in sociology, debates around insider and outsider perspectives go back decades. Working with any social group, you're going to have these issues to deal with. As a researcher, my brother is a professor of design and in the design world, participatory working is the norm. So if you want to create a product that's going to be used by people, you work with them, and it's interesting how in certain disciplines this is quite well integrated, whilst in others it's quite revolutionary.
Speaker 1:Neuroscience, there's talk of an interactive term. So a change in theory, but recognizing that brains work interactively and in social situations, and this is a factor you can't discount when trying to do neuroscience, and so it seems this recognition is growing on a broader scale and sort of double entity work is one example of that yeah, one example of that, and it's in quite well with the general trends in cognitive science.
Speaker 2:From a very practical perspective, would you have any suggestions, say, for educators who are working with young people who want to sort of be able to work double empathy into their daily practice?
Speaker 1:The first thing is humility and putting assumptions to one side as best one can. Putting assumptions to one side as best one can, I know kind of impossible, but yeah, and learn from the person you're working with. Be your best teacher on that person's needs and experiences. And it's a real joy to work with different, diverse minds and why a lot of teachers get into it. The variety of people they get to work with and see that they use their best instincts as teachers and what they think as an experience is often and with parents, another example. Trusting one's instincts is often the best part. You can read all the help and guidance and advice, but you often know best your own personal situation. You often know best your own personal situation and it does take effort. So something I say around double empathy is if the non-autistic person can meet the autistic person halfway, as it were, put a similar amount of effort in to meet that autistic person halfway, as it were. Put a similar amount of effort in to meet that autistic person where they are. It's what the autistic person is putting in all the time when they're navigating the social world and that will do the most kind of good, of good and so things which are should, in a sense should, come naturally to a teacher in a way.
Speaker 1:Um is already a good approach to take, um and uh and yeah. So humility is a key thing. So, yes, there's things one can learn about autistic perception, sensory sensitivities and these things can give you a general guide and signposting to the nature of the issues someone might have. But that's it, you know. Then you're back to square one and building rapport with that individual, finding out what makes them, uh, interested or avoid, and happy or sad, and the rest of it. So it's. It's about really focusing on relationship and context for those relationships to happen within, and it's not an easy thing where you can just tick off a checklist. This is an ongoing effort that, and you have to allow for mistakes and errors, because you don't solve the double empathy problem. You just reduce it. Um and so um. The better one gets to know an individual, the less of a problem it might be, but you can still have a misinterpretation or a communication breakdown between two best friends who've known each other for decades. You're never free from the problem entirely.
Speaker 2:Yeah, I think from a teacher's perspective it can be quite intimidating almost, because people kind of go okay, what was I taught? What are all the things I have to remember about autistic people, and if you go into an interaction and a relationship with that sort of tension, it's really, really tricky but.
Speaker 2:If you go into it knowing, well, my experience is just my experience. They're experiencing the world in their own way and I have to figure out how that is for them. I think it takes a lot of the tension away from people, doesn't it?
Speaker 1:and it helps if one can be a good listener, be responsive and engaged in that sense, but without dominating an interaction or a space. And one of the things teachers have said to me is that working with very young children is that they feel the need to sort of fill the space, sometimes talk too much or act too much body movement wise and try and get engagement or try and get eye contact and things like that. These practitioners are so used to their own social world and way of being and trying to draw the autistic person into that that they're not fully recognising the autistic need or case or anything. And sometimes it helps to be quite gentle or at least calm, not to feel the need to fill that space. And another autistic young person might be filling the space up quite contentedly themselves. So you get as much variety in personality and temperament as you do with non-autistic people. So saying there's one golden rule that all autistic people is as daft as saying there is for non-autistic people just doesn't work that way.
Speaker 2:Thank goodness, thank you. It just doesn't work that way, thank goodness, thank you. Um, then, my very last question for you is, um, knowing what you know now, as you know an expert, you've worked years in research and you have your own diagnosis is there advice that you'd give to your younger self if you could well?
Speaker 1:trusting oneself, um not listening to the doubters in the world and trusting one's own instinct. And yes, you are right to follow your path. It will work out in the end in a sense. And um you're right in the sense of being the best expert on yourself.
Speaker 1:Um and that other people are useful and helpful but what, what works for them might not be what works for you kind of thing. And the biggest thing I think would be to be easier on myself. That being less judgmental on yourself is because, even though I was quite rebellious and never fully internalized the negativity towards me as a young person, you don't need to be diagnosed to have that kind of social expectation and disjuncture and stigma in a sense. And um, I think it's very hard for young people especially to deal with that sense of failure or being mocked and teased, really being not included in things, or misjudged, misinterpreted all the time. And to me it's like I'd just like to have supported the younger me and basically said yes, you're on, what you're thinking is correct, you're not going mad. There's others out in the world like you too. You might get along with them thinking similar things, similar things.
Speaker 1:And because that I think was quite um, a just had zero contact really with this stuff and I was trying to theorize all of this on my own in essence. And so the very first autistic person that I contacted was Jim Sinclair, who was amazingly gracious and humble and lovely and welcomed me into the community. Autistic Network International was a group, an email group running at the time, and so automatically I was I see things like this started typing away about double language stuff and instant resonance and feedback from other autistic people from around the world from around the world, and it was. That was quite something and that was just really a small handful of people compared to what you see today with social media and things. It's a connection in the movement which is far, far bigger than any of us probably quite imagined, although I did predict that it would massively grow. I even told some of the charities in the UK that this was going to happen and it would just be their way of working, but I'm not sure if they really took that notice or not.
Speaker 1:I guess some organisations have worked alongside this development better than others and have been more participatory. I think, going back to that point, that really makes a big difference. The more one's working with us collectively, the better chances everyone will have. The more barriers you have in a community between the practitioners, the parents, the autistic the more tensions and things can fire up. You need to build bridges and build community which is respectful and mutual. Build community which is respectful and mutual. That really values that autistic voice. It's not tokenistic. I think you see the differences that makes when organisations do have that Hugely.
Speaker 2:And it does feel like there is a slow sort of sea change.
Speaker 1:In that, yeah, there's more call for accountability in relation to it as well, I think, I think that, like we were saying earlier, there is some pushback around neurodiversity and related ideas and so on, but it's generally because the tide is turning. I think there's further to go in terms of how this relates to practice, particularly in health and social care, diagnosis and things like that, and I think they're the next hurdle in a way to see a shift in, because I think in general culture, in the arts, in education, to a large extent we are seeing a recognition and something of a change and and they're about time- thanks so much for listening to the podcast.
Speaker 2:This is a conversation based interview designed to stimulate thinking and hopefully support the development of practice. It's not intended to be medical or psychological advice. The views expressed in these chats may not always be the view of Middletown Centre. If you'd like to know more about Middletown, you can find us on X at Autism Centre and Facebook and Instagram at Middletown Centre for Autism. Go easy until next time.