July 13, 2023

Autism, Neurodiversity, and the Double Empathy Problem

By: Lio Riley, BA

As it is currently defined in the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; American Psychiatric Association, 2013), “persistent deficits in social communication and social interaction” is considered a core characteristic of the diagnosis of Autism Spectrum Disorder. These “deficits” include social-emotional reciprocity, nonverbal communication, and developing, maintaining, and understanding relationships (APA, 2013). Despite this definition being predominant in clinical contexts, many autistic individuals and researchers question to what extent these “deficits” are influenced by external factors. 

Over the years, many advocates have called for the integration of the Social Model of Disability and the Neurodiversity Paradigm into research processes. These frameworks understand disability as being more complex than impairment being located entirely within an individual. Instead, the Social Model of Disability asserts that people are “disabled” by physical and social environments that were not constructed with their ways of being in mind (Northern Officers Group, 1996; Oliver, 2013). This emphasis on environmental factors does not believe that individual difficulty does not exist at all, but that these difficulties are often problematized by socially constructed barriers that could be deconstructed in pursuit of greater accessibility. Depending on the experience of each individual, this deconstruction might resolve disability entirely, while in other cases might allow for the greatest possible relief from challenges and a shift in societal values to understand disabled lives as lives worth living. Inclusion London (2015) provides a longer description and examples of the Social Model of Disability on their website (plain language summary here). 

          

(Inclusion London, 2015)

The Neurodiversity Paradigm, in alignment with this model, posits that neurocognitive differences alone are an incomplete understanding of disability (Walker, 2014; Walker 2016). Instead, complex interactions between an individual’s traits, functioning, environments, systems of power, and socio-political contexts collectively create difficulty that impacts an individual’s navigation of the world around them. Those who advocate for Disability Justice and Neurodiversity frameworks to inform the conceptualization of neurodevelopmental differences feel that these external factors tend to be dismissed when determining what “counts” as an impairment or deficit. Dr. Nick Walker (2014) provides more information about the Neurodiversity Paradigm on her website here

When it comes to autism specifically, Dr. Allison Moore (2020) points out the ways that this dismissal of external considerations manifests when identifying social “deficits.” She states that “the assumption that autism necessarily results in ‘deficits’ in social interaction…means that any breakdown in communication is seen as the responsibility of the autistic person,” which leaves out the “socially situated and context specific” nature of communication (Moore, 2020, p. 43). She explains that because “communication is a two-way process,” breakdowns in communication can be attributed to “both parties’ failure to understand each other and interpret each other’s intentions” (Moore, 2020, p, 43). 

The idea that “social deficits” present in autism can be attributed to both parties present in communication was initially introduced into the academic realm by autistic sociologist and social psychologist Damian Milton in 2011. Milton (2011) introduced what he called the “Double Empathy Problem,” which theorized that autistic “social deficits” could largely be explained by differences between autistic and allistic (non-autistic) people in their communication styles, understanding of one another, and social values. His concern was that it is usually assumed to be the autistic person’s responsibility to adapt to “non-autistic culture and communication” without the same expected from allistic individuals (Reframing Autism, 2020). Milton felt that it was necessary to understand the ways that these differences led to breakdowns in communication between autistic and allistic people, rather than identifying the impairment as being solely a function of psychopathology.

“Non-autistic people often expect Autistic people to learn non-autistic culture and communication…but do not expect themselves to understand or learn Autistic perspectives.” (Reframing Autism, 2020).

What has Research Shown About the Double Empathy Problem?

When Milton first suggested that communication difficulties between allistic and autistic people could be explained by difficulties in understanding occurring on both sides of the interaction, much of his theorizing was “derived through…personal experience, anecdotal accounts, and limited qualitative data” (Milton et al., 2022). However, since he initially introduced the theory, scholars from a range of disciplines have found evidence for the Double Empathy Problem and identified key contributions to communication difficulties. 

While this field of research is still emerging, three major categories of bidirectional social differences have been identified. These include inaccuracies in the social reception and perception of autistic people; differences in quality of rapport and friendship based on the neurotypes of those involved; and differences in communication approaches that lead to breakdowns in information exchange and understanding. 

Social Reception and Perception of Autistic People 

One key component of the Double Empathy Problem is inaccuracies in understanding the nonverbal communication of autistic individuals. Within this area of research, it’s been demonstrated that while allistic people perceive autistic people as being equally as expressive, they have a more difficult time interpreting their expressions compared to the expressions of allistic people (Sheppard et al., 2015). Additionally, recent research has demonstrated that autistic people move their bodies in different ways than allistic people, and that allistic people are likely to apply meaning to these body movements when determining the emotional state of autistic individuals (Edey et al, 2016). Therefore, allistic people in this study were likely to misinterpret the feelings of autistic people, because they assumed that the body movements of autistic people would “mean” the same thing that an allistic person’s body movements would mean. These findings provide greater insight to what is currently understood as “deficits in nonverbal communication,” as the misunderstanding of nonverbal communication occurs on both sides of the interaction. 

In addition to misunderstandings of the affective states of autistic people, research has also indicated that allistic people may perceive autistic people less favorably based on their communication style, but not the content of their communication (Sasson et al., 2017). When study participants were only provided a transcript of what the autistic person had communicated, these biases were eliminated, further supporting the communication breakdown explored above in which the nonverbal cues of autistic people are regularly misinterpreted. These negative first impressions of autistic people led to a reduced intent to pursue further social interaction. 

These findings reframe what are currently considered to be autistic “deficits in developing, maintaining, and understanding relationships” as a “relational…social impairment” that is also impacted by allistic peoples’ “reluctance” to interact with autistic people (APA, 2013; Sasson et al., 2017, pp. 7-8). 

Rapport and Friendships Across Neurotypes

Research exploring the Double Empathy Problem has also found differences in the quality of relationships and communication between two individuals depending on whether or not the neurotypes of the individuals were the same or different. When pairs are composed of two allistic people or two autistic people, rapport tends to be greater than when a pair is made up of one autistic person and one allistic person (Crompton et al., 2020c). Additionally, both autistic and allistic individuals tend to prefer friendships with individuals that share their neurotype (Morrison et al., 2019). When people shared a neurotype with their partner, they shared more about their thoughts and experiences and had greater reciprocity than pairs with differing neurotypes (Bolis et al., 2021; Chen et al., 2021). These findings indicate that that “deficits” in reciprocity and relationships are “relational rather than an individual impairment,” and that the “distinct mode of social interaction style” of autistic people may better explain these differences than a solely deficit-oriented explanation (Crompton et al., 2020c, p. 1, 8; Morrison et al., 2019).

In addition to communication differences, autistic individuals have also shared that they tend to feel more comfortable interacting with other autistic people because they are less likely to be misunderstood, they feel less pressure to “conform with what neurotypical people wanted,” they feel a greater sense of “belonging,” and that they’re more able to “be themselves” (Crompton et al., 2020b, p. 1438). Therefore, stigma and marginalization that autistic people encounter on systemic and interpersonal levels may itself be an impairing social experience. This is in alignment with existing research exploring the ways in which marginalization and associated chronic stress are key contributors to health disparities (Beckie, 2012; Dentato, 2012; Hatzenbuehler, 2009; Hatzenbuehler et al., 2013).

Communication, Information Exchange, and Understanding

A final component of the Double Empathy Problem that research has identified is that autistic people tend to communicate in different ways than allistic people, but that these differences are not necessarily less accurate or effective. One study in particular tested this component by facilitating a more complicated version of the game “telephone” (Crompton et al., 2020a). This study placed participants in groups of eight. A 30-point story that was intentionally difficult to predict and not inherently social was told to the first participant, and was then passed “down the chain” one person at a time. Researchers found that groups that were entirely autistic or entirely allistic were able to retain a similar amount of detail from the story, but that when a mixed group alternated between autistic and allistic participants, much less detail was retained. Additionally, the mixed group reported lower rapport with group members. This study demonstrated that autistic individuals could effectively share information with each other, but that issues arose when autistic and allistic people needed to share information across differing neurotypes.

Research group setup in “telephone” study on Double Empathy (Crompton et al., 2020a)

While much of the previous research specifically focused on comparing autistic and allistic social features, Brett Heasman and Alex Gillespie (2018) noted that approaches to studying autism often operate based on the assumption that allistic definitions of sociality are a universal framework rather than specific set of cultural norms and values typically found in that group. In response, they set out to analyze the particular ways in which autistic individuals create shared social understanding through their unique communication styles. In their research, they found that differences in autistic conversations could be explained by two features: a generous assumption of common ground, and a low demand for coordination. 

The first of these, generous assumptions of common ground, referred to the tendency of autistic individuals to make references with the assumption that the other party would understand them. While this was not always the case, in instances where the other individual did understand, the dyad could engage in creative and productive ways (Heasman & Gillespie, 2018). When misunderstandings did occur — often resulting from being ignored, independent conversations that were not coordinated with each other, or misinterpreting the other’s words or actions — the low demand for coordination provided ample space for both individuals to return from disconnected social interactions and restore coherence. 

To outside observers, both of these communication features may seem problematic. However, as Heasman and Gillespie explain, the integration of these two communication values complement one another so that partners can “build rapport and knowledge” rapidly and effectively (Heasman & Gillespie, 2018, p. 918). In fact, these features also allowed participants to identify shared underlying sub-cultures more rapidly, which further supported their shared rapport and humor. Authors referred to these forgiving dynamics as allowing for the continual experimentation of relational dynamics, leading to shared understanding. The assumed “problematic” nature of autistic communication is not rooted entirely in social deficit, but instead a fundamentally divergent set of social and cultural expectations for communication with differing values than what may be held by the neuromajority.  

Conclusion

While the emerging literature in this area is still limited in its scope, many recent findings have been in alignment with what autistic individuals and communities have been advocating for decades. Many autistic individuals do experience difficulties and distress directly attributed to their differences in neurological functioning, but social and contextual factors also contribute greatly to what are perceived as “deficits.” Understanding these contextual factors can inform the ways in which support and accessibility are created for autistic people in multiple ways. Of these, key considerations include integration of autistic experiences and autistic individuals into autism research; understanding and affirming autistic communication strengths; and utilizing support services that integrate and affirm these experiences, as well. 

Finally, as social differences are largely bidirectional and occur on systemic levels, interventions to create accessibility should be bidirectional and systemic, as well. While many current approaches emphasize direct intervention with autistic individuals to ameliorate perceived ‘deficits,’ few approaches provide psychoeducation to allistic peers and caretakers. Additionally, allistic individuals are unlikely to receive formalized education about autistic social skills, despite the opposite being common practice. In order to deconstruct current patterns of interpersonal bias and communication breakdown, a broader understanding of autistic differences and their contextual features is imperative. 

References

American Psychiatric Association. (2013). Neurodevelopmental Disorders. In Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596.CautionaryStatement  

Beckie TM. (2012). A Systematic Review of Allostatic Load, Health, and Health Disparities. Biological Research For Nursing. 14(4):311-346. doi:10.1177/1099800412455688  

Chen, Y.-L., Senande, L. L., Thorsen, M., & Patten, K. (2021). Peer preferences and characteristics of same-group and cross-group social interactions among autistic and non-autistic adolescents. Autism, 25(7), 1885–1900. https://doi.org/10.1177/13623613211005918 

Crompton, C. J., Ropar, D., Evans-Williams, C. V., Flynn, E. G., & Fletcher-Watson, S. (2020a). Autistic peer-to-peer information transfer is highly effective. Autism, 24(7), 1704–1712. https://doi.org/10.1177/1362361320919286 

Crompton, C. J., Hallett, S., Ropar, D., Flynn, E., & Fletcher-Watson, S. (2020b). ‘I never realised everybody felt as happy as I do when I am around autistic people’: A thematic analysis of autistic adults’ relationships with autistic and neurotypical friends and family. Autism, 24(6), 1438–1448. https://doi.org/10.1177/1362361320908976 

Crompton CJ, Sharp M, Axbey H, Fletcher-Watson S, Flynn EG, & Ropar D. (2020c). Neurotype-Matching, but Not Being Autistic, Influences Self and Observer Ratings of Interpersonal Rapport. Front Psychol. 23;11:586171. doi: 10.3389/fpsyg.2020.586171. PMID: 33192918; PMCID: PMC7645034.

Dentato, M.P. (2012, April). “The minority stress perspective.” Psychology and AIDS Exchange Newsletter. American Psychological Association. https://www.apa.org/pi/aids/resources/exchange/2012/04/minority-stress 

Hatzenbuehler ML. (2009). How does sexual minority stigma “get under the skin”? A psychological mediation framework. Psychol Bull. Sep;135(5):707-730. doi: 10.1037/a0016441. PMID: 19702379; PMCID: PMC2789474.

Hatzenbuehler, M.L., Phelan, J.C., & Link, B.G. (2013). Stigma as a Fundamental Cause of Population Health Inequalities. American Journal of Public Health 103, 813_821, https://doi-org.proxy.lib.umich.edu/10.2105/AJPH.2012.301069 

Heasman, B., & Gillespie, A. (2019). Neurodivergent intersubjectivity: Distinctive features of how autistic people create shared understanding. Autism, 23(4), 910–921. https://doi.org/10.1177/1362361318785172

Inclusion London. (2017). “The Social Model of Disability.” Inclusion London. https://www.inclusionlondon.org.uk/about-us/disability-in-london/social-model/the-social-model-of-disability-and-the-cultural-model-of-deafness/ 

Kapp SK, Gillespie-Lynch K, Sherman LE, Hutman T. Deficit, difference, or both? Autism and neurodiversity. Dev Psychol. 2013 Jan;49(1):59-71. doi: 10.1037/a0028353. Epub 2012 Apr 30. PMID: 22545843.

Milton, Damian (2011) ”Who am I meant to be?” In search of a psychological account of autism from the viewpoint of an insider. In: Critical Autism Studies Seminar Day, 18th Jan 2011, Sheffield, UK. (Unpublished)

Milton, Damian (2012) On the ontological status of autism: the ‘double empathy problem’.  Disability & Society, 27 (6). pp. 883-887. ISSN 0968-7599.

Milton, D., Gurbuz, E., & López, B. (2022). The ‘double empathy problem’: Ten years on. Autism, 26(8), 1901–1903. https://doi.org/10.1177/13623613221129123 

Northern Officer Group (1996). Defining impairment and disability. Leeds (UK). Available: http://www.leeds.ac.uk/disabilitystudies/archiveuk/Northern%20Officers%20Group/defining%20impairment%20and%20disability.pdf 

Oliver, M. (2013). The Social Model of Disability: Thirty Years On. Disability & Society 28(7). Pp. 1024-1026. https://doi.org/10.1080/09687599.2013.818773  

Reframing Autism. (2020, December 17). Milton’s ‘double empathy problem’: A summary for non-academics. Reframing Autism. https://reframingautism.org.au/miltons-double-empathy-problem-a-summary-for-non-academics/ 

Sasson, N., Faso, D., Nugent, J., Lovell, S., Kennedy, D., & Grossman, R. (2017). Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments. Sci Rep 7, 40700. https://doi.org/10.1038/srep40700 

Walker, N. (2014). “Neurodiversity: Some Basic Terms and Definitions.” Essays and Interviews. Neuroqueer. https://neuroqueer.com/neurodiversity-terms-and-definitions/

Walker, N. (2016). “Autism and the Pathology Paradigm.” Essays and Interviews. Neuroqueer. https://neuroqueer.com/autism-and-the-pathology-paradigm/

Blog Categories
Recent Posts
Our Newsletter

Join our email list to learn more about Sunfield Center and get practical tips, useful resources and information, and stay updated about upcoming training.