“Everyone’s a little autistic”: communication work and (dis)enfranchisement in the late-in-life autism identification process

Authors

Abstract

Autistic adults remain underrepresented in autism research (Interagency Autism Coordinating Committee, 2017), even as a growing number of adults are identified or diagnosed later in life (Zeidan et al., 2022). This qualitative study examines two interpersonal communication processes involved in late-in-life autism identification, an experience often shaped by lifelong masking of Autistic traits (Bargiela et al., 2016; McQuaid et al., 2022). Conceptualizing Autistic masking as a form of communication work, this study utilizes the Integrative Theory of Communication Work (Donovan & Hazlett, 2024) and the Theory of Communicative Disenfranchisement (Hintz & Scharp, 2024) to explore late-identified and/or diagnosed (LI/D) Autistic adults’ experiences of disenfranchisement and communicative labor. This study draws on in-depth interviews with LI/D Autistic adults. A participatory research design was employed, using a Community Advisory Board of LI/D Autistic adults who worked as collaborators by co-creating the research design, conducting participant recruitment, and guiding and offering feedback on data analysis. This approach centers Autistic people as experts on their own experiences and challenges deficit-based models that have historically dominated autism research. Findings reveal that conversations about late identification are characterized by intensive communication work and involve frequent encounters with disenfranchising talk that acted to discredit, silence, stereotype, stigmatize, and exclude LI/D Autistic adults. They described experiencing disenfranchising talk beginning in childhood and extending into adulthood. These disenfranchising messages reflected and reinforced the hegemonic ideologies of neuronormativity and the biomedical model of autism, which reinforces narrow assumptions about what autism “looks like.” Disenfranchising talk, particularly messages that targeted the natural communication and behaviors of Autistic people, was perceived as a demand for and often prompted the communication work of Autistic masking. This study advances autism research by identifying autistic masking as a process of communicative labor, rather than a set of behaviors enacted in specific situations. Findings also extend communication theorizing by demonstrating how communicative disenfranchisement and communication work operate as interdependent processes in the context of marginalization. Practically, the findings underscore the need for more informed, affirming responses to adult autism identification and highlight the importance of reducing demands for Autistic masking.

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