Autistic people are more likely to have chronic mental and physical health conditions, according to a large University of Cambridge study, but healthcare systems are failing to provide appropriate care for them.
Using an anonymous survey, a team from the Autism Research Centre (ARC) in Cambridge compared the mental and physical health, and healthcare experiences, of 1,285 autistic individuals with 1,354 non-autistic people, aged 16 to 96 years, from 79 countries.
Writing in Molecular Autism, they found autistic adults were more likely to have chronic mental and physical health conditions than non-autistic participants.
These included arthritis, breathing concerns, neurological conditions, anorexia, anxiety, ADHD, bipolar disorder, depression, insomnia, OCD, panic disorders, personality disorders, PTSD, SAD, and self-harm.
Researchers also found autistic people reported experiencing lower quality healthcare than non-autistic people for 50 out of 51 questions about healthcare experiences.
Questions included whether individuals could see a healthcare professional as often as they would like, whether they could explain their symptoms and whether they waited until they had a health emergency before seeing a healthcare professional.
‘There were significant differences (with autistic adults faring relatively worse compared to non-autistic adults) for all items except whether or not individuals have health insurance or are part of a national healthcare programme – for which there was no significant difference,” the study authors wrote.
Sensory sensitivities were becoming better recognised as a core feature of the autistic experience, the researchers noted, yet their role in affecting healthcare quality had not yet been investigated in large comparative samples of autistic and non-autistic adults.
‘Strikingly, for every 10 non-autistic participants that reported being able to describe how their symptoms, pain, or sensory sensitivities feel in their body to healthcare professionals, only two to four autistic participants reported the same,’ the study authors wrote.
Overall, autistic adults were more than four times as likely as non-autistic adults to report sensory overload related to the healthcare environment, and more than seven times as likely to say that frequent sensory overload made it difficult to focus on conversations with healthcare professionals, the study found.
As part of the survey, researchers asked both autistic and non-autistic people whether common situations like collecting a prescription or making a medical appointment would trigger a shutdown (defined as physically or mentally withdrawing from the world) or a meltdown (an intense physical or verbal reaction to a stressful situation).
Researchers found 16.7% of autistic individuals reported collecting a prescription as being a trigger for a ‘shutdown’ compared with 3.7% of non-autistic people.
While 9.5% of autistic people reported collecting a prescription as likely to trigger a ‘meltdown’ compared with 1.6% of non-autistic people.
For autistic people, 38.3% reported setting up an appointment to see a healthcare professional would trigger a shutdown, while 15.8% said it would trigger a meltdown, compared with 10.5% and 4% of non-autistic people respectively.
The survey also highlighted difficulties with communication, with autistic adults being 20 to 36% less likely to report being able to describe their symptoms, understand what their healthcare professional meant, or bring up health concerns if not prompted by a healthcare professional.
They were also more than twice as likely to report not asking all the questions they would like when meeting with a healthcare professional.
‘Difficulties with healthcare professionals appear to be presenting at multiple levels, both in understanding expectations and next steps (in the context of follow-up appointments, medications, specialist referrals, etc.), as well as completing necessary steps/advocating for oneself even in the case of known expectations, possibly due to systemic barriers.’
Lead researcher Dr Elizabeth Weir, a postdoctoral scientist at the ARC, said healthcare systems were failing to meet very fundamental needs of autistic people.
‘This study should sound the alarm to healthcare professionals that their autistic patients are experiencing high rates of chronic conditions alongside difficulties with accessing healthcare,’ she said.
Professor Sir Simon Baron-Cohen, ARC director, said more research was needed on long term outcomes of autistic people and how their health and healthcare can be improved.
‘Clinical service providers need to ask autistic people what they need and then meet these needs,’ he said.