Investigating deaths of people with autistic spectrum disorder in health and social care in England and Wales
| Date | 06 January 2025 |
| Pages | 40-52 |
| DOI | https://doi.org/10.1108/JAP-08-2024-0046 |
| Published date | 06 January 2025 |
| Author | Dana Norris,David Baker,Georgia C. Richards |
Investigating deaths of people with autistic
spectrum disorder in health and social
care in England and Wales
Dana Norris, David Baker and Georgia C. Richards
Abstract
Purpose –This paper aimsto examine the trends identified in inquests conductedin the Coronial system
in England and Walesfor individuals formally diagnosed with autismspectrum disorder (ASD), where the
death occurredwithin a health or social care setting.
Design/methodology/approach –It uses data from 42 reports to preventfuture deaths (PFDs) issued
by Coronersto establish where and in what contexts eachdeath occurred. PFDs are sent to organisations
that Coronersbelieve 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 fromthe extant literature on this issue. Secondly, data
highlighted a lack of trainingand education of staff to understand the complexityof 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’sautism, which served to some extent to
mask thefailures of the agencies involved in thecare of the decedent.
Originality/value –There is limited researchavailable about the preventable deaths of individualswith
ASD in health and social care settings. This paper makes an initial step in highlighting significant
structuralfailures that can lead to preventable deaths.
Keywords Autism, ASD, Preventable death, Suicide, Coroners
Paper type Research paper
Context
There is widespread consensusabout the lack of accurate data regarding deaths of people
with autism spectrum disorder (ASD) in England and Wales, a lack of standardised
reporting mechanisms of deaths of people with ASD and consequently a lack of
understanding about how deaths of people with ASD occur (Glover et al.,2017;Heslop
et al., 2020;O’Leary et al.,2018;Robertson et al.,2021). This article represents an early
attempt to understand how and why deaths of people with ASD occur, by using data
generated by Coroners into deaths of people with ASD in health and social care in England
and Wales in the period 2017–2023. The article does not focus on all deaths linked to ASD
during the period 2017–2023, but focuses on publicly available prevent future deaths
(PFDs) where the deceased was formally diagnosed with ASD and their death in a health or
social care setting was deemed preventableby a Coroner.
The state owes a duty of care to people and is obliged to uphold their right to life under
Article 2 of the European Convention on Human Rights(ECHR). If deaths occur that are
unnatural, suspicious or have occurred in the care of the state, then they should be
independently and rigorously investigated to ensure the death could not have been
prevented (Baker et al., 2023). In England and Wales, Coroners fulfil the statutory
Dana Norris and David
Baker are both based at the
Department of Sociology,
Social Policy and
Criminlology, University of
Liverpool, Liverpool, UK.
Georgia C. Richards is
based at the Department of
Analytical, Environmental
and Forensic Sciences,
King’s College London,
London, UK.
Received 15 August 2024
Revised 23 October 2024
11 November 2024
Accepted 18 November 2024
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.
PAGE 40 jTHE JOURNAL OF ADULT PROTECTION jVOL. 27 NO. 12025, pp. 40-52,©Emerald Publishing Limited, ISSN 1466-8203DOI 10.1108/JAP-08-2024-0046
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