People who are autistic and transgender/gender diverse have poorer health and healthcare, research shows

Autistic transgender/gender diverse individuals are more likely to suffer from long-term mental and physical health problems, including alarmingly high rates of self-harm, new research from the University of Cambridge suggests.

Researchers at the University of Cambridge’s Autism Research Center found that these individuals also report experiencing lower quality health care than both autistic and non-autistic people whose gender identity matches the sex assigned at birth (cisgender).

The findings have important implications for healthcare and support for autistic transgender/gender diverse (TGD) individuals. This is the first large-scale study into the experiences of autistic TGD people and the results have been published in Molecular autism.

Previous research shows that both autistic people and TGD people individually have worse health care experiences and are more likely to be diagnosed with physical and mental health problems than other people.

Additionally, a 2020 survey of more than 640,000 people conducted by the Autism Research Center in Cambridge found that TGD people are more likely to be autistic and have higher levels of autistic traits than other people. Several other studies now confirm this finding, showing that autistic people experience gender dysphoria more often than others.

Despite these findings, there are no studies that consider the risks of mental health problems, physical health problems and quality of healthcare among autistic TGD people.

In the largest study to date on this topic, the team at the Autism Research Center used an anonymous, self-report survey to compare the experiences of 174 autistic TGD individuals, 1,094 autistic cisgender individuals, and 1,295 non-autistic cisgender individuals.

The study assessed rates of mental and physical health problems, as well as the quality of 51 different aspects of healthcare experiences.

The questions about healthcare experiences were broad and included questions about communication, fear, access and advocacy, system-level issues, and sensory experiences. They touched on some very basic aspects of healthcare, including asking participants to endorse statements such as “If I need to see a healthcare provider, I can get there,” “I can describe how bad my pain feels.” ‘ and ‘I usually understand what my healthcare provider means when they discuss my health.’

Both autistic TGD and autistic cisgender adults reported significantly worse healthcare experiences on 50 of 51 items compared to non-autistic cisgender people, confirming that autistic people appear to have poorer quality of healthcare than non-autistic cisgender individuals, regardless of their own gender identity.

Compared to non-autistic cisgender individuals, autistic TGD people were three to eleven times more likely to report anxiety, shutdowns, and meltdowns related to general healthcare experiences.

Of every ten cisgender non-autistic adults who endorsed the following statements, on average, only two cisgender autistic adults and only one autistic TGD adult stated that they: (i) understood what their healthcare provider meant when discussing their health; (ii) knew what was expected of them when visiting a healthcare provider; or (iii) could describe how bad their pain felt.

Autistic TGD people and autistic cisgender people were more likely to report both long-term physical and mental health problems that had been formally diagnosed, suspected, or recommended for assessment by doctors.

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 illness, there were 50 autistic cisgender people and 109 autistic TGD people who reported the same.

Alarmingly, it is now common knowledge that people with autism and people with TGD are at much greater risk of suicide and suicide-related behavior than other people. In 2023, the Department of Health and Social Care specifically recognized autistic people as a priority group in their policy “Suicide Prevention Strategy for England: 2023 to 2028”.

The new study found that, compared to people who are non-autistic and cisgender, autistic cisgender individuals were 4.6 times more likely and autistic TGD people were 5.8 times more likely to report self-harm.

Dr. Elizabeth Weir, a postdoctoral scholar at the Autism Research Centre, and one of the lead researchers on the study, said: “These findings add to the growing body of evidence that many autistic people experience unacceptably poor mental health and are in a very poor state of health. located. high risk for suicide-related behavior We must consider how other aspects of identity, including gender, influence these risks.”

These results highlight the importance of considering intersectionality in clinical settings, including health risks for individuals who hold multiple minority identities. The researchers say doctors should be aware of these risks and the unique barriers to health care that autistic TGD people may experience.

The findings also highlight that people who are autistic and transgender/gender diverse experience particularly high rates of mental health problems and risks of self-harm.

Professor Sir Simon Baron-Cohen, Director of the Autism Research Center and member of the team, said: “We need to consider how we can adapt healthcare systems and individual care to meet the needs of autistic transgender/gender diverse people. Policymakers, clinicians and researchers must work together with autistic people to improve existing systems and reduce barriers to healthcare.”