Thursday 18 July 2024

Charity calls for urgent action to address the increased risk of suicide for autistic people

The Autism Centre of Excellence at Cambridge (ACE) is calling for urgent action from the Government following a report which revealed the most common category of death in autistic children without a learning disability¹ is ‘suicide or deliberate self-inflicted harm’ – accounting for 35% of deaths.

The Learning from deaths: Children with a learning disability and autistic children report, published by the National Child Mortality Database (NCMD), analyses the deaths of all children aged between 4 and 17 in England between April 2019 and March 2022.

Discussing the report, Tom Purser, CEO of the Autism Centre of Excellence at Cambridge (ACE) said: “Every preventable death is one too many. Autistic people are seven times more likely to die by suicide, which is why tackling this issue is our charity’s number one priority. We welcome this report into the deaths of these vulnerable children and young people.”

The report examined the deaths of 77 autistic children without a learning disability¹ that occurred during this period. Of these, over a third (27) died by ‘suicide or deliberate self-inflicted harm’. By comparison, this accounted for 14% of deaths in non-autistic children during the same period.

Tom continued: “Sadly, this is not new information. Previous NCMD reports about suicide in 2020 and 2021 highlighted similar concerns about autistic children. This cannot be ignored any longer.

“Autistic people are also recognised as a priority group in the National Suicide Prevention Strategy in 2023. The Strategy itself addresses autism well, but its autism-specific action plan is woefully inadequate. It features just four actions, none of which are detailed enough to lead to timely progress needed to save lives.”

The report investigated children with a formal diagnosis of autism, however an additional group of 48 children was included in the supporting information. These children didn’t have a learning disability but were either awaiting an autism assessment or had autistic traits mentioned in their records. Based on the data presented, the charity estimates that ‘suicide or deliberate self-inflicted harm’ accounted for over half (56%) of the deaths in this additional group.

Tom added: “Many children without a formal diagnosis struggle to have their needs met, which is likely to increase the possibility of mental health challenges, suicidal thoughts, and even dying by suicide. Given this, it’s extremely concerning that – as of March 2024 – nearly 118,000 children under 18 years old are awaiting autism assessment².”

The NCMD findings reflect those reported by the LeDeR programme³ which exists to learn from the lives and deaths of adults with a learning disability and autistic people. Their most recent report also found suicide to be the top cause of death amongst autistic adults.

“Despite the elevated risk being clearly evidenced from multiple sources, not enough progress has been made. Immediate and urgent action must be taken,” said Tom. “We’re keen to work with the new Government on this issue and call for an urgent meeting to discuss how we can stop the ongoing tragedy of so many autistic children – and adults – dying by suicide. Every day we delay, more lives are lost.”

The Autism Centre of Excellence at Cambridge will be working with NCMD on their reporting processes. Vicky Sleap, Deputy Director of NCMD, said: “Accurate and comprehensive data is the starting point to improve outcomes for children. We look forward to working with ACE to better understand the challenges faced by neurodiverse children and young people, to improve the quality of our unique dataset, and ultimately to improve and save lives.”

For more information visit www.autismcentreofexcellence.org

The Facts

• 35% of deaths in autistic children without a learning disability¹ were due to ‘suicide or deliberate self-inflicted harm’.
• 14% of deaths in non-autistic children were due to ‘suicide or deliberate self-inflicted harm’.
• 56% of deaths in non-autistic children without a learning disability, who were either awaiting an autism assessment or had autistic traits mentioned in their records were due to ‘suicide or deliberate self-inflicted harm’.
• 117,744 children under 18 years old are awaiting autism assessment².