Research suggests that adults with autism often find it hard to communicate with GPs, and that many debilitating health conditions, such as anxiety, depression and neck and back pain, may be going undiagnosed in autistic people as a result.
Scientists at University College London (UCL) analysed GP records for conditions which have previously been shown to be more prevalent amongst autistic people, such as anxiety, depression, and self-harm, as well as physical conditions such as migraine and back pain.
The findings, published in The Lancet Regional Health – Europe, showed no difference in rates of diagnosis for common mental and physical health conditions between autistic and non-autistic people, suggesting that autistic people are less likely to receive diagnoses for common health conditions.
The researchers are calling for better detection of health conditions for autistic people since undiagnosed conditions may be contributing to avoidable suffering and premature deaths for these patients.
It is estimated that 1-3% of the worldwide population is autistic. Autistic people will have widely varying support needs, but studies show that approximately 30% of adults with autism also have a learning difficulty. People with autism, and autism combined with learning difficulties, may struggle to communicate health issues, and those with a learning difficulty may also not recognise the need to tell someone about a health condition.
The research team used anonymised data from GP records from practices throughout the UK to compare rates of diagnosis 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 gynaecological issues) in autistic patients and people of the same age and sex who have not been diagnosed as autistic.
They studied 15,675 people diagnosed as autistic without a learning disability and 6,437 participants diagnosed as autistic with a learning disability. All diagnoses were made between 2000 and 2019.
Despite previous research indicating that these health conditions are more common among autistic people than non-autistic people, the GP records of diagnoses did not reflect this, leading the researchers to suggest that autistic people are less likely to receive diagnoses for common health conditions.
Autistic adults with a learning disability were found to be diagnosed much less frequently than the general population with conditions including depressive disorders, harmful alcohol use, migraine, and neck or back pain.
Lead author Dr Elizabeth O’Nions, from the Department of Psychology and Language Sciences at UCL and the 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. 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.’
She added: ‘Different types of evidence and more thorough investigations may be needed to ensure that autistic people receive equal access to high-quality care.’
Certain mental health conditions tend to be much more prevalent in autistic than non-autistic people. In this study, the researchers found that autistic adults were about twice as likely to have a GP record of self-harm than non-autistic adults.
However, the rate was still lower than expected based on previous mental health surveys, which suggest that older adults self-reporting high autism characteristics in the UK were more than seven times as likely to have anxiety and five times as likely to report self-harm with suicidal intent.
The differences in reported versus expected rates of ill health may infer underdiagnosis among the autistic population, but since the previous studies were undertaken in different environments, further research is needed.
Dr O’Nions added: ‘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.’
The study raises the possibility that undiagnosed conditions may contribute to avoidable suffering and premature deaths for autistic people.
Corresponding author Professor Josh Stott from UCL said that the improved detection of health problems in autistic people, particularly those with learning disabilities, should be ‘a clinical and policy priority’ to reduce health inequalities.
He added: ‘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.’
