Please be aware that this blog discusses deaths by suicide, so please read with care. If you are feeling distressed and need to speak to someone, call Samaritans for free on 116 123, email jo@samaritans.org, or visit samaritans.org. 

The report shares findings on the numbers and causes of any death reported to the LeDeR programme, including the deaths of 152 autistic people without a learning disability in 2024. There were reviews into 87 of these deaths, which highlighted serious delays in identifying people’s needs, gaps in delivering the right support, teams not always working together as they should, and failures to follow existing guidelines.

Between 2021 and 2024, 33% of autistic deaths reported to LeDeR were for death by suicide, misadventure, or accidental death. 

The findings are deeply concerning. They add to growing evidence that too many autistic people face serious health inequalities, including unmet mental health needs, avoidable harm, and increased instances of thinking about or dying by suicide.  

The autism section in the report is based on a very small number of deaths notified to and reviewed through LeDeR. That means various LeDeR stats can’t be used to reflect the full autistic population, or to measure life expectancy of autistic adults without a learning disability. But the findings can’t be ignored. Every suicide is preventable with the right support, and the LeDeR reports have consistently highlighted that in too many cases, services have gotten things devastatingly wrong for autistic people.

Any report that highlights deaths by suicide, accidental death, cancer, and circulatory disease should provide a moment for reflection, learning, and action. The LeDeR team rightly recommends a targeted focus in national policy on preventing suicide in autistic people, and we support their calls for better staff training and action to reduce long waiting lists.

The government has said this will be the final national LeDeR report, with more information to follow on how local teams will use different types of data to improve services for autistic people from now on.

Robust national data is vital, and services must be supported to measure safety risks and outcomes, and other priorities which matter most to autistic people, with accountability where data is not collected. There must also be a role for qualitative data, meaning people’s personal stories can inform changes, not just numbers into and out of services. Whatever approach is taken needs to capture the experiences of all autistic people and not be limited to particular datasets or measures. And above all, the data has to be linked to mechanisms with the teeth and power to deliver change and make sure teams learn the right lessons.

 This is important work, and will take time and resources to get right, but some changes can’t wait.

Work needs to start now on a new, fully resourced cross-government Autism Strategy, informed by evidence and shaped with autistic people and families. The strategy will need to go further than updated guidance pointing services in this direction or that. It’ll need to provide the funding to change the way services work and give staff the help and headspace needed to understand and address the failures that autistic people experience far too often in the current system.  

The latest strategy expired at the end of June, with the government extending it indefinitely until the new one is developed. Getting the strategy and its implementation right provides a real opportunity to deliver lasting and effective change. We need the work to begin on that now.

This should include recruiting more staff to deliver autism assessments, a shift towards earlier identification of autistic people’s strengths and where they need help, and changes to how services are commissioned so people are not blocked from getting the help they need.  

Better signposting to more support should also be made a priority, so that people are not left to fend for themselves after a diagnosis. Access to timely and tailored mental health support is a must, delivered by teams who understand autism, are supported to work together across health, education, employment and other areas, and able to adapt the care they deliver to individuals.

And annual health checks for autistic people should be introduced with teams funded to carry these out, so we can identify people’s needs and risks earlier while better managing any existing conditions they might have.  

We cannot stall on action to reduce the inequalities autistic people continue to face and the unacceptable levels of avoidable death. We welcome the government’s commitment to continue learning from deaths and poor outcomes and hope this is matched by action to address the barriers autistic people face. What’s needed now is a national response that doesn’t shy away from the challenge and learns the difficult lessons so that all autistic people can live happier, healthier, longer lives.