"Feeling Unwanted, When Nobody Wants You Around": Perceptions of Social Pain Among People With Autism

• Published in: The American journal of occupational therapy Vol. 77; no. 2
• Main Authors: Levi, Merry Kalingel, Schreuer, Naomi, Granovsky, Yelena, Bar-Shalita, Tami, Fogel, Irit Weissman, Hoffman, Tseela, Gal, Eyant
• Format: Journal Article
• Language: English
• Published: United States 01.03.2023
• Subjects: Autism Spectrum Disorder; Autistic Disorder; Emotions; Humans; Interpersonal Relations; Pain
• ISSN: 0272-9490
• DOI: 10.5014/AJOT.2023.050061

A paucity of studies have focused on pain experiences among people with autism spectrum disorder, particularly those addressing social pain in daily life contexts or learning from the perspective of autistic people. To explore the social pain experience of autistic people. A descriptive qualitative design followed by deductive thematic analysis. Interviews were semistructured to capture the social pain experience, coping strategies, and implications for the participation of autistic people. Online interviews using Zoom videoconferencing software. Fifteen autistic people were recruited for the study using purposeful and criterion sampling. Four primary themes emerged from the data analysis: (1) a definition of social pain and the distinction between social pain and other types of pain; (2) the sources-internal, external, and combined-of social pain; (3) the loneliness outcome, which echoes the gap between the desire for and lack of social contacts; and (4) coping strategies pertaining to the continuum between inward and outward coping strategies to deal with social pain. The study indicates the existence of a discrepancy between autistic people's need for social interactions and the social pain they experience. It calls for intervention programs for autistic people to improve their coping strategies and promote their self-acceptance and better inclusion in the community. What This Article Adds: Promoting social functioning is a prime role of occupational therapists, and this article adds a novel theoretical model that contributes to that role. The model represents the social pain experiences of autistic people and their strategies to overcome this phenomenon. Firsthand accounts of autistic people regarding social pain enable a better understanding of their desire to be involved in the social context. This study suggests directions for further intervention programs to assist autistic people in fulfilling their wish for social relationships and enabling their enhanced integration into society. Positionality Statement: We recognize that use of person-first versus identity-first language is a source of debate and controversy. We have chosen to use identity-first language for two reasons. First, studies indicate person with autism is the term least preferred by autistic people (Botha et al., 2021). Second, autistic is the term used by the majority of our participants during interviews.