Autistic adults have poorer health and poorer quality health care

People with autism are more likely to have chronic mental and physical health problems, new research from the University of Cambridge suggests. People with autism also report lower quality health care than others. These findings, published in Molecular autismhave important implications for the health care and support of people with autism.

Many studies indicate that people with autism die much younger than others, but there is little research on the health and health care of people with autism throughout adult life. While some studies have previously suggested that people with autism may have significant barriers to accessing health care, only a few small studies have compared the health care experiences of people with autism to others.

In the largest study to date on this topic, the Autism Research Center (ARC) Cambridge team used an anonymous self-report survey to compare the experiences of 1,285 people with autism to 1,364 people without autism, aged 16 to 96. , from 79 different countries. 54% of participants were from the UK. The survey assessed rates of mental and physical health problems, as well as the quality of healthcare experiences.

The team found that people with autism self-reported lower quality health care than others for 50 out of 51 survey items. People with autism were much less likely to say they could describe how their symptoms feel in their body, describe how severe their pain is, explain what their symptoms are, and understand what their healthcare professional means when they discuss their health. People with autism were also less likely to know what is expected of them when they go to see their healthcare provider and to feel appropriately supported after receiving any diagnosis.

People with autism were more than seven times more likely to report that their senses frequently overwhelm them, making it difficult to focus on conversations with healthcare professionals. Additionally, they were more than three times as likely to say they frequently left their healthcare professional’s office feeling like they weren’t getting any help. People with autism were also four times more likely to report experiencing shutdowns or tantrums due to a common healthcare scenario (eg, making an appointment with a healthcare professional).

The team then created a ‘Global Health Inequality Score’ and used new data analysis methods, including machine learning. The differences in healthcare experiences were striking: the models could predict whether or not a participant had autism with 72% accuracy based on their “health inequality score” alone. The study also revealed disturbingly high rates of chronic physical and mental health conditions, including arthritis, respiratory problems, neurological disorders, anorexia, anxiety, ADHD, bipolar disorder, depression, insomnia, OCD, panic disorders, personality disorders, PTSD, SAD and self-harm.

This study should sound the alarm to healthcare professionals that their autistic patients are experiencing high rates of chronic disease as well as difficulty accessing healthcare. Current healthcare systems fail to meet the basic needs of people with autism.”

Dr Elizabeth Weir, postdoctoral scientist at ARC Cambridge, and principal investigator of the study

Dr Carrie Allison, Director of Strategy at ARC and another member of the team, added: “Health systems must adapt to provide reasonable adjustments appropriate to autistic patients and all neurodiverse patients in order to to ensure that they have equal access to high-quality health care.”

Professor Sir Simon Baron-Cohen, ARC director and team member, said: “This study is an important step forward in understanding the issues adults with autism face in relation to their health and care. but much more research We need more research on the long-term outcomes of people with autism and how their health and health care can be improved Clinical service providers need to ask people with autism what they need and then meet those needs.

The research was funded by the Autism Center of Excellence, Rosetrees Trust, Cambridge and Peterborough NHS Foundation Trust, Corbin Charitable Trust, Queen Anne’s Gate Foundation, MRC, Wellcome Trust and the Innovative Medicines Initiative.


Journal reference:

Weir, E. et al. (2022) Adults with autism have lower quality health care and poorer health based on self-report data. Molecular autism.


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