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Investigating deaths of people with autistic spectrum disorder in health and social care in England and Wales

Dana Norris, David Baker, Georgia C. Richards

The Journal of Adult Protection

ISSN: 1466-8203

Article publication date: 6 January 2025

Issue publication date: 29 January 2025

62

Abstract

Purpose

This paper aims to examine the trends identified in inquests conducted in the Coronial system in England and Wales for individuals formally diagnosed with autism spectrum disorder (ASD), where the death occurred within a health or social care setting.

Design/methodology/approach

It uses data from 42 reports to prevent future deaths (PFDs) issued by Coroners to establish where and in what contexts each death occurred. PFDs are sent to organisations that Coroners believe could act to PFDs.

Findings

The research identified four key findings. Firstly, 33% of the deaths identified were not recorded as suicides, marking a clear departure from the extant literature on this issue. Secondly, data highlighted a lack of training and education of staff to understand the complexity of autism. Thirdly, this lack of understanding was often compounded by a lack of specialist provision for people with ASD. Fourthly, Coroners attributed a number of deaths to an individual’s autism, which served to some extent to mask the failures of the agencies involved in the care of the decedent.

Originality/value

There is limited research available about the preventable deaths of individuals with ASD in health and social care settings. This paper makes an initial step in highlighting significant structural failures that can lead to preventable deaths.

Keywords

Acknowledgements

The research was funded by Rachel's Voice, a legal programme run by Fieldfisher solicitors in collaboration with Mencap, who often represent families at inquests into the deaths of people with a learning disability who have died after acute hospital treatment in England and Wales.

Declaration of conflicting interests: No potential conflict of interest was reported by the authors.

Data availability statement: The data that support the findings of this article are available upon reasonable request from the corresponding author.

Ethical approval: The project uses data in the public domain, as such no ethical approval was sought.

Citation

Norris, D., Baker, D. and Richards, G.C. (2025), "Investigating deaths of people with autistic spectrum disorder in health and social care in England and Wales", The Journal of Adult Protection, Vol. 27 No. 1, pp. 40-52. https://doi.org/10.1108/JAP-08-2024-0046

Publisher

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Emerald Publishing Limited

Copyright © 2025, Emerald Publishing Limited

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