A qualitative exploration of the experiences of self-diagnosed autistic women and gender-diverse individuals who are not pursuing an autism diagnosis

Friedman, Alina ORCID: https://orcid.org/0009-0007-4855-6445, Paltoglou, Aspasia and Sorte, Rossella (2024) A qualitative exploration of the experiences of self-diagnosed autistic women and gender-diverse individuals who are not pursuing an autism diagnosis. Neurodiversity, 2. ISSN 2754-6330

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Abstract

A growing number of adults are choosing to self-identify as autistic without obtaining a formal diagnosis; yet, research into this population remains scarce. Women and gender non-conforming autistics are particularly underresearched, with women facing additional barriers to diagnosis. This study examined the lived experiences of self-diagnosed autistic women and gender-diverse adults and explored how autistic identity is constructed outside of formal diagnosis in this population. Participants (n = 6) between the ages of 18 and 69 took part in semi-structured one-to-one online interviews with an autistic researcher to discuss their experiences of being self-diagnosed. Interview transcripts were analysed using interpretive phenomenological analysis. Three superordinate themes were found: (1) autistic self-discovery, (2) living without a diagnosis and (3) self-doubt and self-diagnosis. The findings suggest that many of the experiences of self-diagnosed autistic women and gender-diverse adults are similar to those who are diagnosed but with unique challenges and benefits. This study offers a new perspective on self-diagnosis as an empowering way of attaining a positive autistic identity outside of the deficit paradigm embedded within the diagnostic pathway. Lay Abstract: As awareness of neurodiversity continues to grow, more adults are seeking autism assessments. This rise in demand is placing pressures on diagnostic services resulting in long waiting lists and high private costs. Many autistic adults are choosing to self-diagnose as an alternative to a lengthy and expensive diagnostic process which pathologizes their experiences. Research into this population remains very scarce, and little is known about how and why autistic adults choose to self-diagnose. Autistic women are especially underdiagnosed and underresearched, with gender-diverse autistics rarely included. This study explored how autistic women and gender-diverse adults acquire and shape their autistic identity outside of formal diagnosis and what effect this has had on their lives. An autistic researcher recruited six self-diagnosed autistic adults through social media and conducted online one-to-one video interviews with them. Three main themes were found: (1) autistic self-discovery, (2) living without a diagnosis, and (3) self-doubt and self-diagnosis. The findings offer new insights into the lives of self-diagnosed autistic women and gender-diverse adults and how their experiences are often similar to those who are diagnosed but with unique challenges and benefits. This study offers a new perspective on self-diagnosis as an empowering way of gaining a positive autistic identity outside of the diagnostic model which views autism as a disorder rather than a difference. This may help self-diagnosed autistics feel more able to disclose their identity to others, access more support and experience less invalidation, stigma and self-doubt.