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Inequalities in healthcare can lead to premature death of autistic people

Inequalities in healthcare can lead to premature death of autistic people

A new study has revealed that people with autism in the UK are more likely to die prematurely than people without the condition.

Researchers at University College London (UCL) found that autistic men can expect to die nearly five years before non-autistic men. For autistic women and non-autistic women, the difference in life expectancy was just over six years.

If autism is combined with a learning disability, autistic people can expect to live up to eight years less than a non-autistic person.

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 findings highlight an urgent need to address inequalities in healthcare that disproportionately affect autistic people.

The UK Government estimates that 1 in 100 people are autistic, suggesting there are around 700,000 autistic adults and children in the UK. The UCL researchers have previously published a study which found that the actual number of autistic people in England may be closer to 1.2 million, more than double the number often cited for the entire UK in national health policy documents.

Using anonymised data from GP practices throughout the UK, the researchers identified 17,130 people diagnosed as autistic without a learning disability and 6,450 participants diagnosed as autistic with a learning disability. All participants were diagnosed between 1989 to 2019. The researchers then compared these groups with people of the same age and sex who had not been diagnosed as autistic.

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.

For autistic people who also have a learning disability, life expectancy is further reduced to 71.7 years for men and 69.6 years for women. This is compared to the usual life expectancy of around 80 years for men and 83 years for women living in the UK.

The findings provide the first direct evidence that autistic people in the UK die prematurely. However, the new estimates also suggest that the widely reported statistic that autistic people live 16 years less on average is likely to be incorrect.

Lead investigator of the study, Professor Josh Stott from UCL, 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. We do need to find out why some autistic people are dying prematurely so that we can identify ways to prevent this from happening.’

The researchers suggest autism itself does not directly reduce life expectancy but point to health inequalities, which mean people with autism do not get the support and help that they need when they need it. To access health care, many autistic people will require adjustments to be made, and autistic people who have learning disabilities can find it hard to explain to others when they are experiencing pain or discomfort, meaning health problems can go undetected.

Joint-lead author Dr Elizabeth O’Nions, also from UCL, said: ‘Autistic people are rightly and increasingly pushing for recognition that autism reflects natural and expected variation in how brains function and that society must make space for all. This means that services must be inclusive and accommodating of those who have particular support needs by adapting how they operate.’

Dr Judith Brown, from the National Autistic Society, added: ‘This research should be a wake-up call for the Government, the NHS, healthcare professionals and society as a whole that we must tackle the health inequality autistic people face.’


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