Researchers call for better detection of health conditions for autistic people

Common debilitating health conditions, such as anxiety, depression and neck and back pain, may be under-diagnosed in autistic people, finds a new study led by UCL researchers.

The study, published in The Lancet Regional Health—Europe, analyzed whether autistic people experience similar rates of five common mental health conditions (anxiety, depression, self-harm, harmful alcohol use, and substance use), and three common physical health conditions (migraine, neck/back pain, and gynecological issues), compared to people of the same age and sex who have not been diagnosed as autistic.

The team used anonymized data from GP practices throughout the U.K. to study people who received an autism diagnosis between 2000 to 2019. They studied 15,675 people diagnosed as autistic without a learning disability and 6,437 participants diagnosed as autistic with a learning disability. They then compared these groups with people of the same age and sex, who had not been diagnosed as autistic.

Research suggests that some health conditions are much more common among autistic people. The GP records of diagnoses did not appear to reflect this, which might suggest that autistic people are less likely to receive diagnoses for common health conditions.

The researchers found that autistic adults were about twice as likely to have a GP record of self-harm—highlighting how autistic people have greater unmet mental health support needs compared to the general population.

Autistic adults without a learning disability were 80%–90% more likely to receive a new diagnosis of anxiety or depression compared to the general population. However, this was less than expected based on previous mental health surveys, which show that certain mental health conditions tend to be much more prevalent in autistic than non-autistic people.

For example, one survey found that older adults self-reporting high autism characteristics in the U.K. were more than seven times as likely to have anxiety and five times as likely to report self-harm with suicidal intent.

Meanwhile, the new research also showed that autistic adults with a learning disability were diagnosed much less frequently than the general population with conditions including depressive disorders, harmful alcohol use, migraine, and neck or back pain.

This was particularly surprising, as previous research shows that these conditions are more likely to be common in autistic people with a learning disability than in the general population.

Lead author, Dr. Elizabeth O’Nions (UCL Psychology & Language Sciences and Bradford Institute for Health Research), said, “Autistic adults, particularly those with a learning disability, often find it hard to communicate with GPs about how they are feeling. Some people with a learning disability may also not recognize the need to tell someone about a health condition.

“This means that conditions where signs can’t be readily observed and a person must describe what has been happening to them may go undiagnosed. Different types of evidence and more thorough investigations may be needed to ensure that autistic people receive equal access to high-quality care.”

The team have previously investigated the premature death of autistic people in the U.K. and confirmed that autistic people experience a reduced life expectancy.

Their latest study raises the possibility that undiagnosed conditions may contribute to avoidable suffering and premature deaths.

Corresponding author, Professor Josh Stott (UCL Psychology & Language Sciences), said, “We believe that improved detection of health problems in autistic people, particularly those with learning disabilities, should be a clinical and policy priority to reduce health inequalities.

“Untreated mental and physical health conditions are one potential mechanism that may contribute to the known premature mortality and higher suicide rate experienced by autistic people.”

Limitations of the study include the large proportion of undiagnosed autistic adults in the U.K., meaning that the results of this study that focused on those with a diagnosis only may not generalize to all autistic people.

Dr. O’Nions said, “We can only infer that our results reflect under-diagnosis of common conditions by comparing our results to other studies, which were conducted in different settings. More work is needed to try to actively identify how common these health conditions really are in autistic and non-autistic people to provide more conclusive evidence that they are under-diagnosed.”