Experts say the new estimates are “not surprising” but lifespans of people with autism are not as low as previously thought.
People diagnosed with autism and a learning disability were more likely to die prematurely in the United Kingdom compared to those without those conditions, according to a new study.
Published in The Lancet Regional Health – Europe journal, the study is the first to estimate the life expectancy of autistic people in the UK, with researchers saying it reveals an urgent need to address inequalities to prevent premature death for people on the autism spectrum.
“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,” Josh Stott, the lead investigator and a professor of ageing and clinical psychology at University College London (UCL), said in a statement.
“We wanted to explore whether this impacted the average life expectancy for diagnosed autistic people living in the UK”.
The researchers studied anonymised data from 1989 to 2019 of 17,130 people diagnosed as autistic without a learning disability and 6,450 people diagnosed as autistic with a learning disability.
They found that autistic men and women without a learning disability had an average life expectancy of 74.6 and 76.8 years respectively.
Autistic people with a learning disability had an even lower life expectancy of 71.7 years for men and 69.6 years for women.
While this was lower than the average life expectancy in the UK of around 80 for men and 83 for women, it was higher than previous estimates, researchers said, adding that there was a need to examine why some autistic people die prematurely.
The World Health Organization (WHO) estimates that around 1 in 100 children has autism, which covers a diverse group of conditions characterised by some difficulty with social interaction and communication.
An estimated five million people in the EU are on the autism spectrum as well, but many autistic adults over the age of 50 are not diagnosed.
‘Results do not come as a surprise’
For Aurélie Baranger, the director of the Brussels-based charity Autism Europe, which coordinates 90 autism organisations across the continent, the findings of the study come as no surprise but rather align with other European and US studies.
She named a few reasons that this might be the case, including problems with access to healthcare, misdiagnosis, and other co-occurring conditions or mental health issues among autistic people.
“Autism is a condition where there you have difficulties with social communication and social interaction, and it means that…services in general are not accessible in terms of communication,” Baranger told Euronews Next.
Autistic people may also have different ways to express pain that could lead to misdiagnosis or could “attribute their behaviour to their disability instead of another medical condition” such as epilepsy, Baranger added.
While some people with autism spectrum disorders can live independently, others will need long-term care and support.
People on the autism spectrum are also more likely to have mental health issues, with suicide rates higher in this population.
“It’s linked to many aspects of their lives, their rights not being respected, being discriminated throughout their lives. There are many factors: the stress of not being understood and living in a world that doesn’t accommodate the needs of autistic people,” Baranger said.
Underdiagnosis of autism spectrum disorders
A previous study carried out by UCL researchers noted that the number of autistic people in the UK may be twice as high as previously thought.
ADVERTISEMENTStott said that the reduction in life expectancy may thus be overestimated as it only looks at a fraction of the autistic population.
Dr Judith Brown, the UK National Autistic Society’s head of evidence and research said in a statement that while the results suggest a smaller difference “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,” she said in a statement.
The European Parliament recently passed a non-binding resolution on harmonising the rights of autistic people across EU countries which covers access to healthcare, employment, and education.
“This resolution is non-binding, but it’s a strong call for action both at the European level and at the national level, for policymakers to take further action to address the discrimination and adapt for autistic people,” Baranger said.
ADVERTISEMENTAhead of the European elections, Autism Europe is also following the European Commission’s implementation of its strategy on the rights of persons with disabilities.
The organisation has called for a public health plan for autism that includes accommodation in healthcare premises for autistic people as well as relevant training for health workers.
In September, the EU executive proposed a European Disability Cardto serve as proof of disability status in the bloc.
While subject to negotiations, the card could be “beneficial for the autism community,” Baranger added.
Source: Euro News
