New study reveals autistic people have worse health and healthcare
According to a recent University of Cambridge study, autistic people are more likely to experience long-term mental and physical health disorders. Additionally, autistic people report that their healthcare is of worse quality than that of others. These discoveries, which were reported in the journal Molecular Autism, have profound important implications for the healthcare and support of autistic individuals.
There is a lack of research on the health and healthcare of autistic people over the adult lifespan, despite the fact that several studies show that autistic people are dying far younger than others. Only a few, small studies have compared the healthcare experiences of autistic people to those of other people, despite the fact that some studies have previously revealed that autistic people may face major difficulties in getting healthcare.
The Autism Research Centre (ARC) in Cambridge employed an anonymous, self-report survey to compare the experiences of 1,285 autistic people to 1,364 non-autistic people, aged 16 to 96, from 79 different countries, in the biggest study to date on this subject. Participants from the UK made up 54% of the group. The poll measured the prevalence of physical and mental health issues as well as the quality of healthcare experiences.
The researchers discovered that, across 50 of the survey’s 51 questions, autistic individuals self-reported worse healthcare than the general population. Autistic persons were far less likely to indicate they could express how their symptoms felt in their body, describe how awful their pain felt, explain what their symptoms were, and grasp what their healthcare professional meant when they discussed their health. Autistic persons were also less likely to understand what is expected of them when they see their healthcare professional and to believe they are given sufficient assistance after obtaining any form of diagnosis.
Autistic people were over seven times more likely to report that their senses frequently overwhelm them so that they have trouble focusing on conversations with healthcare professionals. In addition, they were over three times more likely to say they frequently leave their healthcare professional’s office feeling as though they did not receive any help at all. Autistic people were also four times more likely to report experiencing shutdowns or meltdowns due to a common healthcare scenario (e.g., setting up an appointment to see a healthcare professional).
The team then created an overall ‘health inequality score’ and employed novel data analytic methods, including machine learning. Differences in healthcare experiences were stark: the models could predict whether or not a participant was autistic with 72% accuracy based only on their ‘health inequality score’. The study also found worryingly high rates of chronic physical and mental health conditions, including arthritis, breathing concerns, neurological conditions, anorexia, anxiety, ADHD, bipolar disorder, depression, insomnia, OCD, panic disorders, personality disorders, PTSD, SAD, and self-harm.
Dr. Elizabeth Weir, a postdoctoral scientist at the ARC in Cambridge, and the lead researcher of the study said: “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. Current healthcare systems are failing to meet very fundamental needs of autistic people.”
Dr. Carrie Allison, Director of Strategy at the ARC and another member of the team, added: “Healthcare systems must adapt to provide appropriate reasonable adjustments to autistic and all neurodiverse patients to ensure that they have equal access to high-quality healthcare.”
Professor Sir Simon Baron-Cohen, Director of the ARC and a member of the team, said: “This study is an important step forward in understanding the issues that autistic adults are facing in relation to their health and health care, but much more research is needed. We need more research 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.”
The study was funded by the Autism Centre of Excellence, the Rosetrees Trust, the Cambridge and Peterborough NHS Foundation Trust, the Corbin Charitable Trust, the Queen Anne’s Gate Foundation, the Medical Research Council, the Wellcome Trust, and the Innovative Medicines Initiative.
Reference: “Autistic adults have poorer quality healthcare and worse health based on self-report data” by Elizabeth Weir, Carrie Allison and Simon Baron-Cohen, 26 May 2022, Molecular Autism.