“Creating a socially acceptable version of myself”: A qualitative thematic analysis of the female and nonbinary experience of navigating the autism diagnostic system
Ingrid Tien, Samara Wolpe, Arabella Pearson, Kate SeersEarly diagnosis for autistic youth is critical in improving quality of life. However, diagnosis is typically delayed for assigned females at birth (AFAB) and gender-diverse individuals, with their autism-related struggles being overlooked. The current study utilizes semistructured interviews with autistic adults to explore how gender identity and socialization impact diagnostic odysseys. As such, we examined the following research questions: (1) What are the female and nonbinary experiences of pursuing an autism diagnosis, and how do they provide an alternative narrative to a normative male experience? (2) What was the experience like receiving and coping with an autism diagnosis? Qualitative interviews were conducted with 24 autistic adults identifying as nonbinary, agender, or genderfluid ( n = 14), female ( n = 8), and male ( n = 2). Coding used reflexive thematic analysis, informed by tenants of gender socialization roles and the feminist disability model. Participants reported experiencing clinician bias within the mental health system, being mislabeled, having difficulties navigating the diagnostic system, and masking to compensate prior to diagnosis. This study provides a greater understanding of diagnostic trajectories and the intersection of gender socialization with their coping strategies for navigating life without a diagnosis. This informs future practices in reducing diagnostic biases and the toll of compensatory mechanisms used in the interim.
Lay Abstract
Early diagnosis of autism can greatly improve the lives of those affected. However, for individuals assigned female at birth (AFAB) and those who are gender diverse, this diagnosis often comes much later. This delay is because their autism-related challenges are frequently overlooked by healthcare professionals. Our study aimed to understand how gender identity and social experiences influence the journey to receiving an autism diagnosis. We interviewed 24 autistic adults to learn about their personal experiences. Among them, 14 identified as nonbinary, agender, or genderfluid, 8 as female, and 2 as male. We wanted to know how their gender affected their pursuit of a diagnosis and how they coped with life before and after being diagnosed. Participants shared that they often faced bias from clinicians, were misdiagnosed, and had trouble navigating the diagnostic system. Many also talked about “masking” their autism symptoms to fit in, which was exhausting and challenging. Our findings highlight the unique struggles these individuals face and show how gender socialization plays a role in their experiences. By understanding these diagnostic journeys, we hope to reduce biases in the healthcare system and improve support for AFAB and gender-diverse autistic individuals. This research aims to ensure that future practices are more inclusive and sensitive to the needs of all autistic people, leading to earlier and more accurate diagnoses and better overall support.