People with autism who are transgender or gender-diverse (TGD) are at a high risk of long-term physical and mental health problems and are likely to experience a low quality of health care, a new study reveals.
Researchers from the University of Cambridge found that autistic TGD individuals experience more anxiety in healthcare settings than non-autistic cisgender people and have higher rates of self-harm and suicide-related behaviours.
The study is the first large-scale study to consider how intersectionality, specifically autism and gender diversity, can affect health and healthcare experiences. The researchers suggest that the findings, published in Molecular Autism, will help policymakers, clinicians, and healthcare providers adapt systems and improve care for this marginalised group.
The researchers surveyed over 2,500 individuals, including 174 autistic TGD individuals, 1,094 autistic cisgender individuals, and 1,295 non-autistic cisgender individuals. The anonymous and self-reported survey assessed rates of mental and physical health conditions. Participants also described their experiences relating to 51 different aspects of healthcare, covering areas such as communication, anxiety, access and advocacy, system-level issues, and sensory experiences.
Poorer healthcare experiences
All of the participants in the study who had been diagnosed with autism reported significantly poorer healthcare experiences in 50 out of 51 categories, regardless of their gender identity, when compared with non-autistic cisgender individuals.
For autistic TGD individuals, healthcare settings caused significant distress, and these individuals were between three and 11 more likely to report anxiety and distress than non-autistic cisgender people. They were also significantly more likely to be diagnosed with or have a suspected mental or physical health condition.
For every 10 non-autistic cisgender people who had at least one diagnosed physical health condition, there were 15 autistic cisgender people and 23 autistic TGD people. For every 10 non-autistic cisgender people who reported at least one diagnosed mental health condition, there were 50 autistic cisgender people and 109 autistic TGD people who reported the same. Autistic TGD individuals were also 5.8 times more likely to report self-harm compared to non-autistic cisgender individuals.
Communication in healthcare settings
In addition, the survey revealed significant differences in understanding and expectations in healthcare settings between the groups of participants, with fewer autistic TGD adults able to agree that they understood what their healthcare professional meant when discussing their health or that they knew what was expected of them when seeing a healthcare professional.
Autistic TGD participants also felt less able to describe how bad their pain felt compared to other participants.
Professor Sir Simon Baron-Cohen, director of the Autism Research Centre at the University of Cambridge and a member of the team, said: ‘We need to consider how to adapt healthcare systems and individual care to meet the needs of autistic transgender/gender diverse people. Policymakers, clinicians, and researchers should work collaboratively with autistic people to improve existing systems and reduce barriers to healthcare.’
