Autistic People’s Experience of Empathy and the Autistic Empathy Deficit Narrative.

KIMBER, Lesley, VERRIER, Diarmuid and CONNOLLY, Stephen (2023). Autistic People’s Experience of Empathy and the Autistic Empathy Deficit Narrative. Autism in Adulthood. [Article]

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Abstract
Background: There is a dominant discourse, both in clinical texts and throughout the academic literature, that autistic people lack empathy; however, over the past decade, both clinicians and academics have increasingly rejected deficit-based descriptions of autism in favor of more nuanced explanations of the experience of autistic individuals in a social world. Methods: This study asked 76 autistic individuals about their own experience of empathy and the oft-cited empathy deficit. Data were thematically analyzed and revealed a wide array of empathic self-concepts among respondents. Results: Notably, there was a high proportion of hyper-empathic experiences. Many respondents reported their empathic responses to be overwhelming, or even distressing. These different experiences of empathy contrast with societal expectations of empathy, which often result in additional labor for autistic people as they navigate the non-autistic centered world. Conclusion: Although the academic literature is, in some areas, slowly moving away from a deficit perspective, more broadly there is still a negative impact from misconceptions around autistic people and empathy. Further work needs to be done to not only explore this misconception at a societal (rather than academic) level, but also better bridge the gap around the changing ideas of empathy and real-world understanding of autistic empathy.
Plain Language Summary
Why is this an important issue? There is a stereotype that autistic people lack empathy, which can potentially lead to negative perceptions and biased behaviors. This stereotype has roots in earlier academic literature around autism. However, although this literature has become more nuanced over time, the stereotype persists among the general population. What is the purpose of this study? This study directly asked autistic people about their own experience of empathy and of the empathy deficit narrative to provide a richer description than is afforded by traditional studies that typically use questionnaire measures. What did the researchers do? We asked a diverse group of 76 autistic adults to tell us how they experience empathy and what their views were of the autistic empathy deficit narrative via an online survey. These data were then analyzed, and themes created, using qualitative content analysis. What were the results of the study? The first theme, heterogeneity of empathic experiences, captured the diverse ways in which autistic people experience empathy. Some did report a lack of empathy, whereas others did not, and some reported experiencing extreme emotional responses (hyper-empathy). The second theme, empathy as an effortful process, captured some of the challenges experienced during the empathy process and the strategies used to overcome these. The third theme, conditional empathy, captured the features of others that made it more or less likely that empathy would be experienced. Some participants found it easier to empathize with close others, animals, and other autistic people. The fourth theme, challenging the empathy deficit narrative, captured participants’ perspectives on the empathy deficit narrative, which ranged from firm agreement to firm disagreement, and the perception of harm that comes from this narrative, such as interpersonal prejudice or poor clinical practice. What do these findings add to what was already known? Previous quantitative studies using self-report measures have found various differences in empathy between autistic and non-autistic people. This study added qualitative nuance to these findings; described diverse lived experiences of empathy among autistic people, particularly in relation to hyper-empathic experiences; and articulated the resistance of autistic people to the harmful stereotypes that are based on the empathy deficit narrative. What are potential weaknesses in the study? Due to our recruitment method, the participant sample included only those who were engaged in active online autism communities. As such, the findings here may be limited in terms of how well they capture a broad range of experiences. In addition, although an online survey allowed data collection from a relatively large number of people for a qualitative study, it also meant that, unlike more typical qualitative data collection methods, it was not possible to ask participants to elaborate or to clarify their views. How will these findings help autistic adults now or in the future? We hope that this study highlights the need for greater attention to the experience of empathy in autistic people. Articulation of these issues may help autistic people reflect on their own experiences and feel ‘‘seen.’’ Simultaneously, education at a societal level is needed to increase awareness of these issues and reduce dehumanization, stereotyping, and prejudice among non-autistic people.
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