Who gets an autism diagnosis as an adult has changed a lot since 2010, UK and Swedish study finds

If you were diagnosed as an adult in the last few years, a new study suggests you are part of a very big shift.

The research, published in BMJ Mental Health, used population-based health records from the UK and Sweden. It found that the number of people aged 16 and over being newly diagnosed as Autistic has risen sharply, and that the people being diagnosed now look quite different, medically, from those diagnosed in 2010.

What the study found

According to the BMJ’s summary of the paper:

• In the UK, first recorded diagnoses rose from 6 per 100,000 people in 2010 to 64 per 100,000 in 2023. In Sweden, they rose from 43 to 65 per 100,000 between 2010 and 2021.
• Diagnoses rose fastest among 16 to 20 year olds and among females in both countries. They also rose fastest among white people in the UK, and among people with Swedish-born parents in Sweden.
• Fewer newly diagnosed adults had epilepsy, psychosis or intellectual disability on their records. In the UK, a history of epilepsy fell from 10% to 4%.
• More had ADHD, anxiety, depression or other mental health diagnoses first. In the UK, a history of anxiety rose from 29% to just over 58%.

The researchers put it plainly: “The characteristics of individuals diagnosed as autistic have changed dramatically since 2010 in both the U.K. and Sweden.”

What it doesn’t tell us

This is an observational study, so it cannot explain why things changed. The researchers say their data cannot tell apart two possibilities: clinicians getting better at recognising forms of autism that look less like the old stereotype, or other mental health presentations being diagnosed as autism.

In our view, the first reading deserves serious weight. Headlines about “too many diagnoses” have a habit of following studies like this one. The data fit a story that many Autistic people already know from the inside: for years, women and girls, people who masked, and people who could speak and did well at school were missed. Many of them got an anxiety or depression label long before anyone said the word autism.

That would explain exactly the pattern this study describes: more young people and females diagnosed, and more people arriving at diagnosis with years of anxiety and depression behind them.

The real question

The researchers say that, whatever the reason, the needs of the people being diagnosed must be recognised and met with appropriate support. That’s the part that matters most. A rising number of diagnoses tells us how many people have been left without understanding. It doesn’t tell us that services are ready to meet them. Being diagnosed should be the start of support, not the end of the conversation.

This piece summarises the British Medical Journal’s summary of the study, as published by Medical Xpress. Read the original paper for the full findings and methods.