By Owen Jones
Autistic people disproportionately suffered during the COVID-19 pandemic worldwide – and this was no different for the 700,000 people in Britain with the condition.
Autism can be defined as a neurodevelopmental disorder which affects people before birth. The pandemic was always going to present an even more strenuous experience for such individuals.
The National Autistic Society (NAS) said: “Public services have been failing for years to record data about autism. As a result, we are going to struggle to really know the full impact of coronavirus on autistic children and adults in the UK.”
This has left autistic people without representation in public services or policy during the pandemic. For some, this may have led to dangerous ‘Do not attempt CPR’ decisions if they became ill with COVID-19.
Coronavirus: lessons learned to date, a House of Commons Joint Committee report published in June, highlighted the disproportionate deaths of autistic people and those with learning disabilities during the pandemic.
A major source for these findings was a Public Health England (PHE) report. The report estimated a mortality rate of up to 3.6 times the general population between February and June 2020, translating to 369 deaths per hundred thousand people.
The data sources for the PHE report included:
● COVID-19 Patient Notifications System (CPNS)
● Learning Disabilities Mortality Review
● CQC: Deaths of people receiving social care.
But only 20 to 30 per cent of autistic people also have a learning disability.
The data excluded the majority of autistic people. The four cases of autism without learning disability in the CPNS were placed in the non-learning disability group.
A 2022 systematic review, published in JAMA Pediatrics, found autistic people are more likely to die from natural and unnatural causes.
Autistic people have been excluded from their own public health data and policy decisions throughout the pandemic.
It emerged in February 2021 that ‘Do not attempt CPR’ (DNACPR) decisions were issued to people with learning disabilities and autism during the pandemic.
The NAS revealed: “People who contacted us about it were concerned about how they could make sure it didn’t happen to them or their loved ones”.
The lack of data means it is not known how many autistic people were given DNACPR decisions or what their outcomes were.
The NHS clarified their position that DNACPR decisions should not be given to people with autism or learning disabilities if they are otherwise healthy. The false conflation of autism and learning disabilities could be why DNACPR decisions were given to autistic people.
The NAS suggested these issues predated the pandemic and emphasised: “Autistic people and their families must always be at the centre of decisions about their own care.
“Anything less is just wrong.”
A Department of Health and Social Care spokesperson told Redaction: “We supported and protected autistic people throughout the pandemic through a range of actions, including providing £1.2m of funding to support autistic people and people with learning disabilities with their physical and mental wellbeing.
“We also commissioned rapid research to improve our understanding of any adverse impacts on autistic people and their families as a result of the pandemic.
“These findings informed the development of our refreshed national autism strategy, which has been helping to reduce diagnosis waiting times and improve access to high quality health and social care for autistic people.”
The little autonomy, agency or consideration given to autistic people is likely why many suffered during the pandemic.
It is a warning that many of us may have our right to life taken away by arbitrary reasons and misunderstanding.
Featured Image: Becky Wethrington @ Flickr (CC BY-NC-ND 2.0)
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