Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being
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 well-being and identity. This study aimed to explore the well-being and id...
| Main Authors: | , , |
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| Format: | Article |
| Language: | English |
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SAGE Publishing
2022-11-01
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| Series: | Women's Health |
| Online Access: | https://doi.org/10.1177/17455057221137477 |
| _version_ | 1811220710580813824 |
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| author | Miriam Harmens Felicity Sedgewick Hannah Hobson |
| author_facet | Miriam Harmens Felicity Sedgewick Hannah Hobson |
| author_sort | Miriam Harmens |
| collection | DOAJ |
| description | 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 well-being and identity. This study aimed to explore the well-being 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: Well-being 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 well-being. The subthemes 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 well-being 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 well-being. |
| first_indexed | 2024-04-12T07:47:32Z |
| format | Article |
| id | doaj.art-32dcd19e056649b1b18030e6f9ec0a24 |
| institution | Directory Open Access Journal |
| issn | 1745-5065 |
| language | English |
| last_indexed | 2024-04-12T07:47:32Z |
| publishDate | 2022-11-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Women's Health |
| spelling | doaj.art-32dcd19e056649b1b18030e6f9ec0a242022-12-22T03:41:41ZengSAGE PublishingWomen's Health1745-50652022-11-011810.1177/17455057221137477Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-beingMiriam Harmens0Felicity Sedgewick1Hannah Hobson2Department of Psychology, University of York, York, UKSchool of Education, University of Bristol, Bristol, UKDepartment of Psychology, University of York, York, UKObjective: 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 well-being and identity. This study aimed to explore the well-being 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: Well-being 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 well-being. The subthemes 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 well-being 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 well-being.https://doi.org/10.1177/17455057221137477 |
| spellingShingle | Miriam Harmens Felicity Sedgewick Hannah Hobson Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being Women's Health |
| title | Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being |
| title_full | Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being |
| title_fullStr | Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being |
| title_full_unstemmed | Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being |
| title_short | Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being |
| title_sort | autistic women s diagnostic experiences interactions with identity and impacts on well being |
| url | https://doi.org/10.1177/17455057221137477 |
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