Background: Although studies have found that autism is underdiagnosed in women and that autistic women have poorer well-being outcomes than 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 recognize 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 well-being, 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 20 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 after diagnosis as stemming from facing male stereotypes of autism. We consider the implications of our findings for clinicians, researchers, and those who work with autistic women.
Keywords: camouflaging; diagnosis; mental health; women with autism.
Why was this study done?: Research shows that autistic women are under-recognized and underdiagnosed. This can lead to a lack of support. Other research indicates worse mental health outcomes in autism. Exploring the perspectives of autistic women could help us understand how diagnosis may relate to mental well-being.
What was the purpose of this study?: This study examined the experiences of autistic women. We focused on well-being, mental health, and the role of diagnosis. We wanted to gain insight into how to support autistic women to achieve positive well-being.
What did the researchers do?: The researchers read blogs from 20 blogsites, reflecting the views and experiences of 23 autistic women. Women were either self-identifying or clinically diagnosed. The researchers then used a qualitative research technique called “thematic analysis” to summarize what women often said about well-being and diagnosis.
What were the results of the study?: Acceptance and feelings of belonging were important. We developed three themes: (1) self-understanding and self-acceptance, (2) being understood and accepted by others, and (3) exhaustion. Study participants felt that diagnosis often helped them understand their needs and be kinder to themselves. Diagnosis also helped women make sense of what had happened to them in the past. Finally, it helped them connect with a community, and improved relationships. However, stereotypes of autism affected women's own acceptance of their diagnosis. In some cases, feelings that they did not fit an autism diagnosis led to imposter syndrome. They described the struggle for acceptance, before and after their autism diagnosis, as exhausting. They felt this exhaustion came from trying to hide their difficulties or having to explain why they did not fit stereotypes.
What do these findings add to what was already known?: These findings support research that has identified high levels of exhaustion in autistic women due to trying to hide their difficulties and conform to societal expectations. Our findings suggest that acceptance is important for autistic women's well-being after their diagnosis. Facing a lack of acceptance from others could impact on women's self-acceptance. This could disrupt the positive effects a diagnosis has for women's well-being.
What are potential weaknesses in the study?: In their blogs, women were remembering their experiences. Therefore, time may have impacted these women's views, and changed what is important to them. Our sample was limited as it did not include women who publicly identified as having intellectual disabilities, it only contained adult women (mainly aged 20–50 years), and it did not include nonbinary individuals. Experiences of autistic women who write blogs may be different from those of other autistic women.
How will these findings help autistic adults now or in the future?: We suggest that when women seek diagnosis, acknowledgment of the difficulties they have faced coping without the recognition of being autistic is crucial. Clinicians should be aware that women may mask their difficulties, and they should avoid minimizing underlying problems. This study suggests that challenging the stereotypes associated with autism and educating professionals about autism in women are highly important. Women may benefit from support after diagnosis that helps them to manage experiences of being told they do not appear autistic, or do not fit people's expectations of autism.
Copyright 2022, Mary Ann Liebert, Inc., publishers.