Learning Disability Today
Supporting professionals working in learning disability and autism services

Autistic women with a learning disability die 13 years younger than general population

Autistic people with and without a learning disability have a reduced life expectancy compared to the general population, according to new research.

The study, which is published in The Lancet Regional Health – Europe, is the first to estimate the life expectancy and years of life lost by autistic people living in the UK.

The biggest life expectancy gap was seen between autistic women with a learning disability and the general population, with this group, on average, living until just 69.6 years old. The average life expectancy for women is 83 years old.

More than 23,000 people’s health records analysed

To conduct the research, a team led by UCL researchers anonymised data from GP practices across the UK to study people who received an autism diagnosis between 1989 and 2019.

In total, 23,580 people were included in the study. Of these, 17,130 people had a diagnosis of autism but not a learning disability, while 6,450 participants had a diagnosis of both autism and a learning disability.

These participants were then compared to a group of people of the same age and sex who did not have a diagnosis of autism or a learning disability. The usual life expectancy in this group is 80 for men and 83 for women.

Autistic women disproportionately affected

The researchers found that autistic men without a learning disability had an average estimated life expectancy of 74.6 years, and autistic women without a learning disability around 76.8 years.

This means autistic men die, on average, five years earlier than non-autistic men, and autistic women six years younger.

Autistic men with a learning disability have an estimated life expectancy of 71.7 years, while for women, this was just 69.6 years.

This means autistic men with a learning disability die, on average, eight years earlier than the general population, and women 13 years younger.

The authors of the study say the widely reported statistic that autistic people live 16 years less on average is therefore likely to be incorrect.

The findings may over-estimate the reduction in life expectancy experienced by autistic people

The study’s authors say the findings indicate an urgent need to address inequalities that disproportionately affect autistic people.

This may, in part, be caused by difference in communication styles and social interaction, which can make it harder for autistic people and people with a learning disability to communicate their needs, meaning health problems often go undetected.

However, the authors acknowledge that the findings may over-estimate the reduction in life expectancy experienced by autistic people on average.

This is because the study only included those who have an autism diagnosis, when there is likely to be thousands of undiagnosed autistic people. People with a diagnosis are likely to have greater support needs and more co-occurring health conditions than autistic people on average.

Health services must be inclusive and accommodating

Lead investigator of the study, Professor Josh Stott, said: “Autism itself does not, to our knowledge, directly reduce life expectancy, but we know that autistic people experience health inequalities, meaning that they often don’t get the support and help that they need when they need it. We wanted to explore whether this impacted the average life expectancy for diagnosed autistic people living in the UK.

“Our findings show that some autistic people were dying prematurely, which impacted the overall life expectancy. However, we know that when they have the right support, many autistic people live long, healthy and happy lives. Although our findings show important inequalities, we were concerned about frightening statistics that are often quoted, and it is important to provide more realistic information.”

Professor Stott says we now need to find out why some autistic people are dying prematurely so that we can identify ways to prevent this from happening.

Joint-lead author, Dr Elizabeth O’Nions (UCL Psychology & Language Sciences), said services must be “inclusive and accommodating” to ensure the needs of autistic people are met.

“We believe that the findings of this study reflect inequalities that disproportionately affect autistic people,” she said.

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