Autistic people in England who do not also have a learning disability are approximately 51% more likely to die in a single year compared with the general population, according a report in HSJ that sourced a leaked document based on NHSE statistics.
The HSJ report claimed sight of an internal NHS England document showing that the standardised mortality rate between April 2020 and March 2021 was 11 deaths per 10,000 among the general population, but 16.6 deaths per 10,000 for people with autism without learning disabilities.
The document noted that there was "some uncertainty" around the 16.6 figure, with lower and upper bounds of 13 and 20.6 given at 95% probability, but said that the number represented a 51% higher mortality rate for autistic people - a figure that the HSJ claimed estimated the mortality rate attributable to autism for the first time.
Higher Risk of Premature Mortality
There has been previous data on mortality and life expectancy for people with learning disabilities, such as a calculation by NHS Digital that from 2015 to 2018, people with a learning disability were about four times more likely to die than the general population.
Earlier this year, a study from the University of Cambridge revealed "stark" differences in both self-reported general health and in quality of healthcare for people with autism compared with others, and noted that they had "high rates of chronic conditions alongside difficulties with accessing healthcare". The researchers insinuated that as well as poorer physical and mental health, people with autism faced a higher risk of premature mortality.
However, the NHSE analysis seen by HSJ stated that this was the first time it has been possible to calculate mortality for autistic people on "something approaching" a national basis for England.
The report highlighted that there was uncertainty and that gaps in the data remained, however, and noted that the data applied to the first year of COVID, which was a "very abnormal year for mortality rates".
People With Autism Die 5 Years Earlier on Average
Other NHSE figures in the leaked statistics, based on data covering 56% of GP registered patients in England, also purported to show that people with autism were on average dying 5 years earlier than members of the general population, with their life expectancy on average 75 years – 5.4 years less than the general population.
The causes of this premature mortality in this group could be difficult to pinpoint because of the different ways autism presents itself, Dr Dominic Slowie, a GP and former NHSE national clinical director for learning disability, told the HSJ.
Also, the underlying reasons would be "multifaceted" and maybe driven by social factors such as isolation, unemployment, poor diet and nutrition, alongside less healthcare.
"If people are marginalised and isolated, and a pandemic comes along, it increases their risk. Those social factors are likely major determinants… And a large number are likely to have been institutionalised.
"In some cases, people with autism who are severely disabled and can't communicate their needs in a conventional way are going to have premature mortality for the same reasons that people with a learning disability do, because people do not really understand the level of their need or do not investigate their need in a reasonably adjusted way," he said.
"While, if someone is presenting atypically in their communication, we mustn’t make presumptions – we must make reasonable adjustments to ensure they are investigated and diagnosed in the same way."
Such Inequality 'Utterly Wrong'
Commenting on the report for Medscape News UK, Tim Nicholls, head of influencing and research at the National Autistic Society, said: "It's utterly wrong that in this day and age autistic people experience such inequality in our health system. Autistic people need the right support and professionals who understand autism, but these shocking figures show the devastating consequences when this doesn’t happen.
"It's vital that the reasons behind these shocking figures are fully researched, understood and tackled. From talking with autistic people every day, we know the many health inequalities autistic people face when their health needs are not understood and they aren’t supported to communicate.
"Interpreting and letting doctors know about your symptoms can be difficult for autistic people, the sensory environment of a GP surgery might feel impossible to cope with, autistic people may be over- or under-sensitive to pain, they might find public health information too confusing to follow, or they might be tired of trying to engage with a health system that doesn't understand them. All these things contribute to the difficulties autistic people face when they’re trying to use the NHS and will be part of the reasoning behind this new evidence.
"This is why commitments in the Government's autism strategy and NHS England's Long-Term Plan are so vital, and why they must be fully funded. We won't stop campaigning for better training, adapted support, and accessible communication until autistic people get the fair and equal health system they deserve."
