Abstract
Objective
There has been suggestion that current diagnostic instruments are not sufficient for detecting and diagnosing autism in women, and research suggests that a lack of diagnosis could negatively impact autistic women’s wellbeing and identity. This study aimed to explore the wellbeing and identity of autistic women at three points of their diagnostic journey: self-identifying or awaiting assessment, currently undergoing assessment or recently diagnosed, and more than a year post-diagnosis.
Methods
Mixed-methods were used to explore this with 96 women who identified as autistic and within one of these three groups. Participants completed an online questionnaire, and a sub-sample of 24 of these women participated in a semi-structured interview.
Results
Wellbeing was found to differ significantly across groups in three domains: satisfaction with health, psychological health, and environmental health. Validation was found to be a central issue for all autistic women, which impacted their diagnosis, identity, and wellbeing. The sub-themes of don’t forget I’m autistic; what now?; having to be the professional and no one saw me were also identified.
Conclusion
These results suggest that autistic women’s wellbeing and identity differ in relation to their position on the diagnostic journey in a non-linear manner. We suggest that training on the presentation of autism in women for primary and secondary healthcare professionals, along with improved diagnostic and support pathways for autistic adult women could go some way to support wellbeing.
There has been suggestion that current diagnostic instruments are not sufficient for detecting and diagnosing autism in women, and research suggests that a lack of diagnosis could negatively impact autistic women’s wellbeing and identity. This study aimed to explore the wellbeing and identity of autistic women at three points of their diagnostic journey: self-identifying or awaiting assessment, currently undergoing assessment or recently diagnosed, and more than a year post-diagnosis.
Methods
Mixed-methods were used to explore this with 96 women who identified as autistic and within one of these three groups. Participants completed an online questionnaire, and a sub-sample of 24 of these women participated in a semi-structured interview.
Results
Wellbeing was found to differ significantly across groups in three domains: satisfaction with health, psychological health, and environmental health. Validation was found to be a central issue for all autistic women, which impacted their diagnosis, identity, and wellbeing. The sub-themes of don’t forget I’m autistic; what now?; having to be the professional and no one saw me were also identified.
Conclusion
These results suggest that autistic women’s wellbeing and identity differ in relation to their position on the diagnostic journey in a non-linear manner. We suggest that training on the presentation of autism in women for primary and secondary healthcare professionals, along with improved diagnostic and support pathways for autistic adult women could go some way to support wellbeing.
| Original language | English |
|---|---|
| Number of pages | 11 |
| Journal | Women's Health |
| Volume | 18 |
| Early online date | 15 Nov 2022 |
| DOIs | |
| Publication status | E-pub ahead of print - 15 Nov 2022 |