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

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.