Action to save lives
What are we doing?
Our first step towards saving lives has been to ask autistic people and those who support them about their priorities for suicide prevention. Results from that work will be available later in 2025 and will guide our next steps.
Alongside that work, discussion with autistic people, clinicians, commissioners, and national policymakers has given us an understanding of some of the fundamental issues. This understanding is already driving our work in several keys areas, including policy change, data improvement, exploring promising approaches and engaging with a public inquiry that has the potential to drive national change in relation to suicide prevention. In keeping with our values, we are including autistic people in all aspects of this work.
Action to improve data about suicide in autistic people
The lack of high-quality data about this topic is a huge problem and we are working on it in several ways. You can read about our work to influence national data via the Office for National Statistics here. We are also analysing coroners’ reports about preventing future deaths and are working with the National Child Mortality Database (NCMD) to ensure as much as possible is learned from their data about suicide in autistic children and young people. We will publish these findings and use them in our efforts to improve policy and services for autistic people.
Suicide is not about any one issue. Every national policy has the potential to make life easier or harder for autistic people, from policy and legislation about health or social care to the way that the benefits system works. We will be drawing the Government’s attention to this fact. Decisions made now, for example about new plans for the NHS, could impact the suicide rate either positively or negatively, and the Government needs to take this into account to ensure it doesn’t drive an increase in preventable suicides.
With this in mind, we are engaging with the current House of Lords Special Inquiry Committee reviewing the Autism Act 2009. We plan to work with our Community Advisory Panel to ensure that the views of many autistic people are taken into account during that review. We know that the Autism Act has not driven the positive change that was desperately needed and still is, 16 years later.
We recently facilitated five workshops and a community survey to feed into the Change NHS consultation, as part of our commitment to working to ensure that autistic people’s views are included in NHS developments. We are also working with autistic people and a large group of relevant organisations, from NHS England and the Department of Health and Social Care to charities, academics and clinicians, to push for a meaningful national action plan for suicide prevention in autistic people. While we were glad to see that the 2023 Suicide Prevention Strategy highlighted autistic people as a high risk group, the accompanying action plan included only four autism-specific actions – and none of those were detailed enough, or came with enough accountability, to drive the change needed. This has been borne out by the fact that the 2024 deadlines have passed with no apparent action or impact.
Action to ensure the Lampard Inquiry answers questions about autistic people who died
The Lampard Inquiry is a statutory public inquiry investigating the deaths of over 2,000 mental health inpatients under the care of Essex NHS Trusts between 2000 and 2023. Based on everything we know about autistic people’s experiences in mental health services, and their increased risk of suicide, we believe that many of those who died will have been autistic, although not all will have been able to access a formal diagnosis. Unmet needs in relation to autism may be one of the key factors underpinning many of the deaths. It is therefore vital that the inquiry properly explores this possibility, despite incomplete and inadequate data. We are doing everything we can to ensure that the Inquiry finds the answers needed to prevent more of these deaths in future.
In her opening statement, Baroness Lampard suggested she will make recommendations for national improvements and highlighted that some of the issues remain of current concern. We would argue that the ongoing suicide of autistic people is perhaps the most pressing of those current concerns.
"My key concern is properly and fully to understand all the issues I'm required to address and to make meaningful recommendations. This is to ensure that any necessary improvements in mental health care are made here in Essex but also nationally and to do this within a reasonable period of time. There is urgency to my task. A number of the issues that have been identified remain of current concern and I need to address those quickly.”
Baroness Lampard, Lampard Inquiry Opening Statement, 9 September 2024.
And finally, action to restore hope
Need urgent help? If you’re having a difficult time or you’re worried about someone else and you need support, please visit our resources page.
Take Action
If you’d like to help us with this work, please join our Community Advisory Panel.
