"How dare they think that they know us more than we know ourselves?" Trans autistic experiences of epistemic injustice in gender-affirming health care


Kai Jacobsen, Caleton University

Transgender people are much more likely to be autistic than the general population, with approximately 14% of trans and nonbinary people in Canada identifying as autistic (Trans PULSE Canada, 2020). Research indicates that autistic trans people experience significant barriers to accessing healthcare, especially gender-affirming health care such as hormones and surgeries. While research into autism and gender diversity is increasing, most is conducted from a pathologizing medical framework that fails to incorporate the voices or lived experiences of trans autistic people themselves. My research addressed this by asking: What are trans autistic people’s positive and negative experiences with accessing gender-affirming health care? What are the impacts of these experiences on trans autistic people’s lives? How can gender-affirming health care providers better support trans autistic people? To answer these questions, I conducted qualitative semi-structured interviews with 12 autistic adults who had accessed gender-affirming care in Ontario in the past five years while an adult. Interviews were conducted over Zoom or in writing over Microsoft Teams chat, based on participant’s preferences. Participants were recruited from trans and autistic social media groups and community organizations. I analyzed these interviews using reflexive thematic analysis. Participants described numerous instances of being unfairly discredited, not believed, not taken seriously, or invalidated by health care providers. I frame these experiences as examples of epistemic injustice—harm done to individuals in their capacity as knowledge-holders. Many health care providers have not received sufficient education in trans health care, and trans people often know much more about gender-affirming care than their providers. However, providers sometimes perceive their client’s claims to knowledge as a threat to their medical and epistemic authority. Consequently, participants described how some providers use their expert status and specialized training to assert dominance and authority over their clients. Participants felt that ableist attitudes ingrained in society led providers to underestimate and discredit autistic people’s capacity to understand themselves and make decisions. Consequently, many participants did not trust the health care system and avoided disclosing their autism, masked their autistic traits to appear neurotypical, or avoided care altogether. Some participants felt pressured to say the “right” answers and confirm to a restrictive narrative of transness in order to access care. Despite these significant harms, participants also described positive experiences in which health care providers acknowledged the limits of their clinical knowledge, listened deeply to their client, and worked together to support a decision-making process that centred the patient’s autonomy and embodied knowledge. These contrasting experiences highlight the centrality of epistemic (in)justice to trans autistic people’s positive and negative healthcare encounters. This presentation will highlight epistemic injustice as an undertheorized aspect of trans health care experiences. I argue that the medicalization of both autism and transness devalues trans autistic individual’s self-knowledge and creates the conditions for epistemic injustice in healthcare. Improving health care for all trans people—but particularly trans autistic people—requires developing epistemic humility and willingness to listen to and learn from clients as key clinical skills for gender-affirming health care providers. Based on participants’ experiences and suggestions, I will identify recommendations for policy and practice changes to improve gender-affirming health care.

This paper will be presented at the following session: