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Autistic and transgender/gender diverse people’s experiences of health and healthcare

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Peer-reviewed

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Abstract

Abstract

        Background
        Autistic people and transgender/gender diverse people experience poorer healthcare experiences and greater risk of diagnosed, suspected, and assessment recommended health conditions, compared to non-autistic and cisgender individuals, respectively. Despite this, there is a paucity of studies on the healthcare experiences and health outcomes of transgender/gender diverse autistic individuals.
      
      
        Methods
        We compared the healthcare experiences and health outcomes of cisgender autistic (n = 1094), transgender/gender diverse autistic (n = 174), and cisgender non-autistic adults (n = 1295) via an anonymous, self-report survey. All individuals whose sex assigned at birth did not match their current gender identity were categorized as transgender/gender diverse; this was possible to determine, as the survey asked about sex assigned at birth and gender in separate questions. Unfortunately, n = 57 transgender/gender diverse non-autistic participants were excluded from these analyses a priori, due to low power. Unadjusted and adjusted binomial logistic regression models with FDR correction were employed to assess healthcare experiences and rates of co-occurring mental and physical health conditions.
      
      
        Results
        Both transgender/gender diverse and cisgender autistic adults had higher rates of all health conditions (including conditions that are formally diagnosed, suspected, or recommended for assessment), compared to cisgender non-autistic adults. Transgender/gender diverse autistic adults were 2.3 times more likely to report a physical health condition, 10.9 times more likely to report a mental health condition, and 5.8 times more likely to report self-harm than cisgender non-autistic adults. Both autistic groups also reported significantly poorer healthcare experiences across 50/51 items.
      
      
        Limitations
        These data were not originally collected to understand the experiences of transgender/gender diverse individuals. In addition, our recruitment strategies, use of a convenience sampling method, and the use of a self-report survey limit the generalizability of the study. As our sample was biased towards white individuals, UK residents, relatively highly educated individuals, those assigned female at birth, and those who currently identify as female, our findings may be less applicable to individuals of differing demographics. Finally, the present study does not include information on the experiences of transgender/gender diverse non-autistic people.
      
      
        Conclusions
        Autistic people have poorer self-reported health and healthcare; however, being gender diverse is associated with further risk for certain adverse experiences and outcomes. Future research on the health and healthcare experiences of transgender/gender diverse autistic people is urgently needed. In particular, forthcoming studies in this area should aim to recruit large-scale and representative studies and should compare the experiences of transgender/gender diverse autistic people to those of transgender/gender diverse non-autistic people. Greater recognition of challenges and reasonable adjustments are essential for people with marginalized, intersectional identities in clinical practice.

Description

Acknowledgements: We are grateful to all our participants, as well as the Cambridge Autism Research Database and Autistica’s Discover Network for assisting with recruitment. Thanks also to the autistic adults whose input supported the development of our survey questions, as well as the members of our post-analysis focus group, including Joseph Dixon, Ellie Hawes, and all other focus group participants who preferred to remain anonymous.


Funder: Autism Centre of Excellence at Cambridge


Funder: NIHR Applied Research Collaboration East of England


Funder: Simons Foundation Autism Research Initiative; doi: http://dx.doi.org/10.13039/100014370


Funder: Templeton World Charitable Fund


Funder: Medical Research Council; doi: http://dx.doi.org/10.13039/501100000265

Journal Title

Molecular Autism

Conference Name

Journal ISSN

2040-2392

Volume Title

16

Publisher

Springer Science and Business Media LLC

Rights and licensing

Except where otherwised noted, this item's license is described as http://creativecommons.org/licenses/by/4.0/
Sponsorship
Rosetrees Trust (G102199)
Cambridge and Peterborough NHS Foundation Trust (G102307)
NIHR Cambridge Biomedical Research Centre (NIHR203312)
Wellcome Trust (214322\Z\18\Z)
Innovative Medicines Initiative 2 Joint Undertaking (No 777394)