The Preventable Deaths Tracker enables information from coroners to be easily collected, searched, and analysed. Without this tool, it would nearly be impossible to have an accurate and systematic understanding of these preventable deaths.”
Dr Georgia Richards, King’s Prize Fellow, Institute of Pharmaceutical Sciences
30 January 2025
Systemic failings contributed to preventable deaths of people with autism
A new study examining the deaths of people with Autism Spectrum Disorder (ASD) in health and social care settings highlights systemic failures, insufficient training, and gaps in specialist support that contribute to avoidable outcomes.
The research, supported by Dr Georgia Richards from King’s—who developed the Preventable Deaths Tracker, a key tool used in the study—was conducted in collaboration with Dana Norris and Dr David Baker from the University of Liverpool. It aimed to understand the causes and circumstances of deaths among individuals with ASD.
Funded by Rachel’s Voice—a legal programme run by Fieldfisher solicitors in partnership with Mencap— the study was published in The Journal of Adult Protection. The researchers analysed the Coroners' inquests of 42 individuals diagnosed with ASD, who died between January 2017 and July 2023, with a specific focus on deaths deemed preventable by Coroners in health and social care settings.
The Preventable Deaths Tracker, the first tool of its kind in the UK developed by Dr Richards to systematically analyse Coroners’ reports, played a crucial role in this research. Using 41 targeted keywords, the team identified relevant cases while excluding deaths unrelated to systemic failings, such as accidents or deaths in police custody. This process revealed recurring themes, such as insufficient staff training, a lack of specialist services for autistic individuals, and even cases where autism - the condition itself - was cited as the sole cause of death.
The study challenges the assumption that suicide is the leading cause of death among autistic individuals. While the majority of deaths in the study were attributed to suicide, 33% were not classified as such, suggesting a more complex interplay of factors. Organisational failings were found to play a significant role in many cases, with systemic issues often leaving vulnerable individuals without adequate support.
During a death investigation, Coroners are required to issue a Prevention of Future Deaths (PFD) report if they believe action is needed to prevent similar deaths occurring. In the reports reviewed, 57% highlighted concerns about insufficient understanding of ASD. The analysis of the PFD reports revealed that this lack of awareness across agencies created barriers to identifying and addressing individuals’ mental health needs. In some cases, this led to individuals requiring mental health support being rejected or discharged prematurely from care services.
The research also identifies a gap in specialist services tailored to the needs of autistic individuals. Many PFDs cited the absence of appropriate accommodations or resources as a contributing factor to these deaths, which increased the risks faced by this population.
The current death investigation system makes it difficult to learn from deaths. The mission of the Preventable Deaths Tracker is to improve the accessibility of such information so we can prevent future deaths."
Dr Richards
With limited research on preventable deaths within the autistic population, particularly in the UK, this study sheds light on the reasons behind preventable deaths of autistic individuals and provides insights for improving care systems and guiding future practices.
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King's Prize Research Fellow