The quest for acceptance: A blog-based study of autistic women's experiences and well-being during autism identification and diagnosis

Background: While studies have found that autism is underdiagnosed in women and that autistic women have poorer wellbeing outcomes compared to men, less is known about autistic women’s experiences with self-identification or diagnosis or how they feel such experiences affect their mental health. Methods: We explored autistic women’s experiences of coming to recognise and understand themselves as autistic. We used data collected from blogs written by autistic women about their diagnostic or self-identification experiences. We were particularly interested in wellbeing, and how this contributed to, was affected by, and interacted with the identification and diagnostic process. We used thematic analysis to explore and document experiences described in blogs from twenty blogsites (representing the views of 23 autistic women). Results: Acceptance was a central issue. We developed themes of self-understanding and self-acceptance, being understood and accepted by others (including peers, clinicians, and others in the autism community), and the exhaustion resulting from trying to be accepted and be understood. These issues arose both when going through the diagnostic process, and after receiving a formal diagnosis. Conclusions: Diagnosis and identification may have both positive and negative effects on autistic women’s well-being, with women often describing difficulties following diagnosis as stemming from facing male stereotypes of autism. We consider the implications of our findings for clinicians, researchers and those that work with autistic women.