The future of LeDeR: national learning and accountability must not be lost
Content warning: suicide The latest LeDeR report was published this week and the Government has announced it will be the last report of its kind. LeDeR stands for Learning from Lives and Deaths of people with a learning disability and autistic people. When an eligible death is reported to LeDeR, a review is carried out […]
LeDeR report republished today after retraction just three months after its long-delayed appearance
Background For many years, evidence has shown that autistic people and people with a learning disability have reduced life expectancy. In September 2025, minister Stephen Kinnock said, “The latest report shows that on average, people with a learning disability die 19.5 years younger than the general population and are almost twice as likely to die […]
Charity sector calls out Government on ‘unacceptable’ autism policy
Joint statement: Today the Government has responded to the House of Lords’ report, ‘Time to deliver: the Autism Act and the new autism strategy’. As the autism charity sector, we stand together to say the Government’s response is unacceptable. We see no evidence that the Government intends to develop a new national autism strategy, or […]
Latest LeDeR report retracted over ‘missing’ and ‘incomplete’ data
We have been informed by NHS England that the LeDeR report (Learning from lives and deaths: People with a learning disability and autistic people) has now been retracted, just three months after its long-delayed publication. The NHS England email stated “Some of the data was missing and incomplete at the time of analysis. To ensure […]
Autism Action respond to false and harmful President Trump announcement about autism
Tom Purser, CEO of Autism Action, said: “This is a profoundly grave and serious moment for autistic people and autism science. The Trump administration’s announcement has thrown the doors open for the worst kind of conspiracy theorists and anti-vaccination disinformation peddlers. Many autistic people, parents, and their supporters will be waking up today scared and […]
Visiting Parliament alongside bereaved parents – asking Government to step up for autistic people
Note: Content mentions suicide and may be distressing Suicide prevention was debated in Parliament this week, prompted by World Suicide Prevention Day We took the opportunity to deliver a letter to Baroness Merron, who has responsibility for suicide prevention, highlighting the failings of the Government’s action plan and calling for improvements. The full letter can […]
New suicide prevention research furthers our understanding of the links between suicide risk and autism and helps us plan for change
The first batch of research commissioned by Autism Action into understanding why the risk of suicide is higher in autistic people and, crucially, what we can do about it, was released last week. The research, led by the University of Cambridge in collaboration with Bournemouth University, has been published in the journal Autism in Adulthood, and […]
Will the LeDeR report be about saving lives or saving face?
We expect the overdue LeDeR report to be published imminently We’d like to say a big thank you to everybody who supported our public call for the LeDeR* report to be published. We are confident that making a noise about this issue is starting to make a difference. If you added your name before August […]
Response from Minister regarding delay to LeDeR report
In July we sent a letter to the Health Secretary, with over 40 signatures including those from bereaved families and disability campaigners. Since then, over 200 additional people have added their support here. The letter demanded action to get the LeDeR programme – ‘Learning from Lives and Deaths: people with a learning disability and autistic […]
Joining forces to call for overhaul of the system to reduce preventable deaths
On Monday 21st July, 2025, we joined forces with charities, bereaved family members, campaigners and academics to call for overhaul of the system designed to learn from the deaths of autistic people and people with learning disabilities and reduce preventable deaths. Read the letter – and add your support – below. Our full press release […]
