Life expectancy gap for autistic people smaller than previously thought, study suggests

Autistic people might not have as reduced a life expectancy as previously thought, a new study has suggested.

But the gap for those diagnosed with autism was still “significant” and the latest research showed they continued to face “unacceptable inequalities”, the National Autistic Society said.

The study, led by University College London (UCL) researchers, is said to be the first to estimate the life expectancy and years of life lost by autistic people living in the UK.

The research, published in The Lancet Regional Health – Europe, 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.

The estimated life expectancy for people diagnosed with autism and a learning disability was around 71.7 years for men and 69.6 years for women.

These were all lower than the usual life expectancy of around 80 years for men and around 83 years for women living in the UK, researchers said.

While for women diagnosed with autism and a learning disability the life expectancy gap was greatest – amounting to around 13 years – it was still lower than a previous estimate quoted by researchers of autistic people living 16 years less on average.

Researchers said more work needed to be done to assess why some autistic people were dying prematurely in order to find ways to prevent this happening.

Lead investigator of the study Professor Josh Stott said that while they had highlighted inequalities, they also wanted to provide “more realistic information” to avoid “frightening statistics”.

Prof Stott said: “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.

“We do need to find out why some autistic people are dying prematurely so that we can identify ways to prevent this from happening.”

Researchers said it could be hard for some autistic people to explain to others when they were experiencing pain or discomfort, which could lead to health problems going undetected.

They also referenced a report earlier this month by Baroness Hollins (pictured) which warned against the use of long-term segregation – which she said should be renamed solitary confinement – of autistic people and those with learning disabilities in hospitals.

Prof Stott also said there was an under-diagnosis in the general population and cautioned that it was likely not all autistic people experienced a reduced life expectancy.

She said: “Those who are diagnosed may be those with greater support needs and more co-occurring health conditions than autistic people on average.

“We think this is particularly the case for women diagnosed with autism and learning disability – the larger reduction in life expectancy may reflect a disproportionate underdiagnosis of autism and/or learning disability in women.”

Dr Judith Brown, from the National Autistic Society, described the latest study as “very important research”.

Dr Brown added: “While the results of this study suggest a smaller difference than previously understood between the life expectancy of autistic and non-autistic people, they are still significant.

“These findings demonstrate that autistic people continue to face unacceptable inequalities through a lack of understanding, barriers to vital services and inadequate care, which lead to poorer mental and physical health outcomes.

“Without investment, improved understanding, inclusion and the correct level of support and care, autistic people will continue to see reduced life expectancy, with the most at-risk group in this study being autistic women with learning disabilities.

“This research should be a wake-up call for Government, the NHS, healthcare professionals and society as a whole that we must tackle the health inequality autistic people face.”

The study used anonymised data from GP practices throughout the UK, looking at people with an autism diagnosis between 1989 to 2019.

They studied 17,130 people diagnosed as autistic without a learning disability and 6,450 participants diagnosed as autistic with a learning disability.

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