Insufficient training and gaps in specialist support in health and social care settings are contributing to preventable deaths of autistic people, according to new research.
The study published in The Journal of Adult Protection analysed the Coroners’ inquests of 42 autistic people who died between January 2017 and July 2023, with a specific focus on deaths deemed preventable by Coroners in health and social care settings.
It 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.
The study used the Preventable Deaths Tracker, the first tool of its kind in the UK to systematically analyse Coroners’ reports. 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.
Dr Georgia Richards, King’s Prize Fellow, Institute of Pharmaceutical Sciences who developed the tool, said: “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.
“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.”
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 from occurring. In the reports reviewed, 57% highlighted concerns about insufficient understanding of autism.
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.
Rachel’s Voice, a legal programme run by Fieldfisher solicitors in partnership with Mencap, funded the study.
