The ‘double empathy problem’: Ten years on

In simple terms, the ‘double empathy problem’ refers to a breakdown in mutual understanding (that can happen between any two people) and hence a problem for both parties to contend with, yet more likely to occur when people of very differing dispositions attempt to interact. Within the context of exchanges between autistic and non-autistic people however, the locus of the problem has traditionally been seen to reside in the brain of the autistic person. This results in autism being primarily framed in terms of a social communication disorder, rather than interaction between autistic and non-autistic people as a primarily mutual and interpersonal issue.

It has been 10 years since the ‘double empathy problem’ as a term was first described within the pages of an academic journal (Milton, 2012). Although, importantly, the conceptualisation of the issue has since its inception been influenced by and framed within a broader history of academic theorising (particularly from the disciplines of Sociology and Philosophy). Yet, this coining of the term helped express an issue that had long been discussed within autistic community spaces. The initial conceptualising of the double empathy problem was critical of theory of mind accounts of autism and suggested that the success of an interaction partly depended on two people sharing similar experiences of ways of being in the world. This is not to say that autistic people will automatically be able to connect and feel empathy with other autistic people they meet any more than two random non-autistic people would; however, there is greater potential for such, at least in how being autistic (or not) shapes experiences of the social world. An obvious example would be how differing sensory perceptions would impact communicating with others and shared understanding.

While the theorising behind the concept of the double empathy problem was initially derived through a combination of personal experience, anecdotal accounts and limited qualitative data, this area of concern has since been approached by numerous research projects, particularly within the field of Psychology (e.g. Chen et al., 2021; Crompton et al., 2020; Heasman & Gillespie, 2018; Sasson et al., 2017; Sheppard et al., 2016), but also more broadly to the disciplines of Neuroscience (Bolis et al., 2017), Philosophy (Chapman, 2019), Linguistics (Williams et al., 2021), Film Studies (Eastwood et al., 2022) and Design (Gaudion et al., 2014). For instance, Gaudion et al. (2014) explored how to develop shared experiences with autistic adults and non-autistic designers to develop empathic understanding of autistic experience to enhance their designs. While the findings of these studies can be seen to support the concept of the double empathy problem, many of the researchers involved were initially unaware of the concept (including post-publication). In recent years however, researchers have begun to explicitly frame their findings in terms of the double empathy problem, and both conference and online symposia dedicated to the topic have been held. This interest has been more than matched by that found among the autistic community.

This year saw the first of a series of British Psychological Society (BPS)–funded seminars on the double empathy problem. The first seminar, hosted by the University of Portsmouth and University of Kent, gathered 15 Established and Early Career Researchers from across the world.¹ The first part of the seminar focused on theoretical background of the double empathy problem, including previous work regarding how the double empathy problem emerges (e.g. second-person interactions), while the second part consisted of talks documenting recent behavioural, neurological, questionnaire and qualitative evidence investigating the double empathy problem. The seminar ended with a panel discussion around language regarding disability and normality, addressing topics such as moving beyond the binary of autistic/neurotypical towards a more continuous understanding of neurodiversity and ‘recognition’ rather than ‘diagnosis’ of autism. The panel also explored how the double empathy problem might be used to inform support and bridge the gap between autistic and non-autistic people, and more generally examined the future of autism knowledge production. This seminar opened an ongoing conversation between the approximately 500 researchers and members of the autistic community attending, around theories and evidence-based research findings concerning the double empathy problem. This continued dialogue will be crucial for creating a research agenda informed by autistic people themselves and developing good practice.

Despite great strides being taken in this area of research, there remain large gaps in our understanding and avenues to explore. Current work shows that in brief encounters autistic people are routinely perceived more negatively than their non-autistic peers in terms of being less ‘likeable’, more awkward or less trustworthy (Alkhaldi et al., 2021; Lim et al., 2022; Sasson et al., 2017). In fact, autistic adults report frequent experiences of misunderstandings by others and little acceptance by the non-autistic community, which has negative effects on their mental health (Camus et al., 2022). These misunderstandings could partially be due to different expectations from, or preferences for, social interactions, such as friendships (e.g. Finke, 2022). Further empirical research into mental health consequences of misunderstandings and misperceptions experienced by autistic people (e.g. camouflaging, loneliness) is required. However, most important is to identify the sources of these misunderstandings by examining ‘cross neurotype’ interactions systematically. An important step in this process is to gain a developmental understanding of how differences in the social lifeworld of autistic and non-autistic unfold at both the macro (i.e. lifespan/development) and micro scale (i.e. within social relationships at work or school). The inclusion of both autistic and non-autistic stakeholders in every stage of future research about the double empathy problem must be a priority.

It is also vital to remember how the double empathy problem as initially conceived was heavily influenced by sociological theory and that such social interactions happen within a continually negotiated and mutually constructed context, albeit one infused by unequal power relations (Milton, 2016). An account of the double empathy problem cannot ignore such relationships. An obvious example would be how intersectional oppressions would impact social interaction. We have yet to understand, for instance, how two people of different ethnicities as well as different neurotypes experience an interaction. As such, an alternative account of autistic development is needed that is not rooted in notions of a social communication disorder, but of a different embodied way of being that can lead to effects on social interactions and understanding. Work examining what has been called ‘participatory sense-making’ (De Jaegher, 2021) may also be fruitful as this framework not only conceptualises autism at an interactional rather than individual level, but also places an emphasis on the understanding of how the active ‘online’ coordination that occurs between people is at the root of their mutual understanding and becoming.

While there is much work to be done to explore these issues across multiple disciplines, the concept of the double empathy problem has the potential to aid a reframing of autism itself from a social communication disorder to a description of a broad range of developmental differences and embodied experiences and how they play out in specific social and cultural contexts. If this were so, it would lead to a radical change to current diagnostic criteria. This is most important however when considering best practice models for supporting autistic people in a variety of settings. We already know that interpretations about autistic sociality from observations alone may not be accurate (Doherty et al., 2022; Mitchell et al., 2021). Instead of focusing on perceived social deficits and normative remediation, the concept suggests a position of humility in the face of difference, the need to build rapport and understanding and not assume a lack of capacity for understanding. Ultimately, the concept reminds us of the social situatedness of the lives of autistic people and those who support them.