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‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people

BACKGROUND: Autistic women and gender diverse people have specific needs related to their physical and mental health. They also experience more barriers to accessing services. While there are autobiographical accounts of the ‘invisible’ challenges that autistic women and gender diverse people face d...

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Autores principales: Grove, Rachel, Clapham, Hayley, Moodie, Tess, Gurrin, Sarah, Hall, Gabrielle
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10515546/
https://www.ncbi.nlm.nih.gov/pubmed/37727115
http://dx.doi.org/10.1177/17455057231189542
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author Grove, Rachel
Clapham, Hayley
Moodie, Tess
Gurrin, Sarah
Hall, Gabrielle
author_facet Grove, Rachel
Clapham, Hayley
Moodie, Tess
Gurrin, Sarah
Hall, Gabrielle
author_sort Grove, Rachel
collection PubMed
description BACKGROUND: Autistic women and gender diverse people have specific needs related to their physical and mental health. They also experience more barriers to accessing services. While there are autobiographical accounts of the ‘invisible’ challenges that autistic women and gender diverse people face day-to-day, there has been limited research that explores how these experiences impact health and wellbeing. OBJECTIVES: This study aimed to understand the everyday experiences of autistic women and gender diverse people, and their impact on health and wellbeing. DESIGN: Qualitative methods were used to elicit rich information about the unique experiences of autistic women and gender diverse people. METHODS: We conducted semi-structured interviews with 31 autistic adults. The data were analysed using reflexive thematic analysis. RESULTS: We identified 3 themes and 10 subthemes. Our first theme described ‘all the stuff that you have to do to get through life’, including managing domestic tasks, parenting, unique health needs and co-occurring physical conditions. The second theme outlined the impact of ‘living in a world that’s not about us’, describing how navigating the neurotypical world, managing gender role expectations and trying to fit impacts on mental health. Our third theme outlined the positive impacts of ‘shedding all the layers and being myself’, including the importance of formal identification, exploring autistic identity and community, and including autistic people in research to support them to ‘have a good life on their own terms’. CONCLUSION: This study emphasized the importance of shifting the responsibility of health and wellbeing from the individual, and the importance of interpersonal, community, cultural, policy and societal factors in ensuring positive health outcomes for autistic women and gender diverse people. It also highlighted areas that enable autistic women and gender diverse people to flourish, including autistic community connectedness, positive relationships and autistic-affirming support from health professionals.
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spelling pubmed-105155462023-09-23 ‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people Grove, Rachel Clapham, Hayley Moodie, Tess Gurrin, Sarah Hall, Gabrielle Womens Health (Lond) The Health of Autistic Women: State of the Field and Future Directions BACKGROUND: Autistic women and gender diverse people have specific needs related to their physical and mental health. They also experience more barriers to accessing services. While there are autobiographical accounts of the ‘invisible’ challenges that autistic women and gender diverse people face day-to-day, there has been limited research that explores how these experiences impact health and wellbeing. OBJECTIVES: This study aimed to understand the everyday experiences of autistic women and gender diverse people, and their impact on health and wellbeing. DESIGN: Qualitative methods were used to elicit rich information about the unique experiences of autistic women and gender diverse people. METHODS: We conducted semi-structured interviews with 31 autistic adults. The data were analysed using reflexive thematic analysis. RESULTS: We identified 3 themes and 10 subthemes. Our first theme described ‘all the stuff that you have to do to get through life’, including managing domestic tasks, parenting, unique health needs and co-occurring physical conditions. The second theme outlined the impact of ‘living in a world that’s not about us’, describing how navigating the neurotypical world, managing gender role expectations and trying to fit impacts on mental health. Our third theme outlined the positive impacts of ‘shedding all the layers and being myself’, including the importance of formal identification, exploring autistic identity and community, and including autistic people in research to support them to ‘have a good life on their own terms’. CONCLUSION: This study emphasized the importance of shifting the responsibility of health and wellbeing from the individual, and the importance of interpersonal, community, cultural, policy and societal factors in ensuring positive health outcomes for autistic women and gender diverse people. It also highlighted areas that enable autistic women and gender diverse people to flourish, including autistic community connectedness, positive relationships and autistic-affirming support from health professionals. SAGE Publications 2023-09-20 /pmc/articles/PMC10515546/ /pubmed/37727115 http://dx.doi.org/10.1177/17455057231189542 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by-nc/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle The Health of Autistic Women: State of the Field and Future Directions
Grove, Rachel
Clapham, Hayley
Moodie, Tess
Gurrin, Sarah
Hall, Gabrielle
‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people
title ‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people
title_full ‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people
title_fullStr ‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people
title_full_unstemmed ‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people
title_short ‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people
title_sort ‘living in a world that’s not about us’: the impact of everyday life on the health and wellbeing of autistic women and gender diverse people
topic The Health of Autistic Women: State of the Field and Future Directions
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10515546/
https://www.ncbi.nlm.nih.gov/pubmed/37727115
http://dx.doi.org/10.1177/17455057231189542
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