Avoidable deaths and autism



During the pandemic health resources around the world were stretched to their limits and hospital beds, PPE and ventilator systems were all at a premium. It was a difficult time for everyone and on occasions choosing who gets the resources was the decision that nobody wanted to make. What factors could you possibly use to make such life and death decisions? Emergency meetings were held and factors such as frailty and likelihood of survival were taken into account. One of those factors was autism.


The National Institute for Health and Care Excellence (NICE) told doctors they should assess patients with learning disabilities, autism and other limiting conditions as scoring high for frailty and thus move them down the list for accessing life saving resources. This was only changed when enough people protested and NICE had been threatened with legal action.[1]


People with perceived learning disabilities were not treated the same as the general population and a report by the Learning Disabilities Death Review Programme (LeDeR)[2] found that almost half of those who died from COVID-19 did so because they did not receive good enough care. The same report found that DNR's (Do Not Resuscitate) orders were incorrectly issued simply due to the patient's disability labels.


John Baskin received a phone call whilst his son with Down's Syndrome was in hospital. “She [the doctor] was telling me that, ‘If your son needs a ventilator, I’m afraid we’re not going to be able to give him one.’ I just gasped. I felt sick, absolutely sick. I don’t mean that as an expression, I really did.[3]


This type of lethal blind labeling of conditions isn't just an issue of the pandemic. In 2016 Oliver McGowan, an autistic teenager, was admitted to hospital after having some epileptic seizures and was prescribed antipsychotic medication by a consultant against his own and his parents wishes. Antipsychotics were even listed as an allergy in his medical records. These led to his death due to a side-effect of brain swelling 17 days later. An inquest found his death was avoidable.[4]


Of course this isn't just a UK based issue and the same problems exist in other countries. Across the Atlantic plans were put in place that discriminated against people with autism in the event of rationing of medical care. Specifically denying access to ventilators which were in high demand in treating COVID-19 cases.[5]


Representing autistic people as frail and therefore less likely to survive based simply on their diagnosis is just as ignorant as it is unacceptable. Education and greater awareness and acceptance about how autism presents itself is so important and one of the reasons I write this blog.


The idea that my own autism diagnosis, which is attached to my medical record, could lead to such life and death decisions is quite frankly horrifying.


[1] https://www.independent.co.uk/news/health/coronavirus-nhs-treatment-disabled-autism-nice-covid-19-a9423441.html


[2] https://www.england.nhs.uk/wp-content/uploads/2021/06/LeDeR-bristol-annual-report-2020.pdf


[3] https://www.opendemocracy.net/en/opendemocracyuk/half-of-deaths-among-people-with-learning-disabilities-in-2020-were-avoidable/


[4] https://www.bbc.co.uk/news/uk-england-bristol-54602417


[5] https://www.propublica.org/article/people-with-intellectual-disabilities-may-be-denied-lifesaving-care-under-these-plans-as-coronavirus-spreads

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