Tackling Root Causes
Content warning: this page mentions suicide
Seizing opportunities to improve life for autistic people at a ‘root cause’ level
We know that staying focused on relatively few topics will give us the best chance to make big changes in those areas. However, we often come up against underlying issues that have a huge impact on many aspects of life for autistic people. These can be thought of as ‘root causes’, though we could debate at length exactly what can be counted as a root cause. For us, anything that has an effect on many people, or on many issues, can be thought of as a root cause. For example, the Autism Act is a law that could do lots of good across health and social care – or make very little difference, depending on how well it works. When we see opportunities to influence something ‘root causy’ like that, we leap into action. Especially when we can see a unique role for our charity.
House of Lords Autism Act Committee as a chance for ‘root cause’ change via community empowerment
One example is our recent work for the House of Lords Autism Act Committee. We know that the Autism Act has largely failed to improve life for many autistic people, and so the House of Lords review is a once in a generation opportunity to push for improvements. We’ve seen lots of individuals and organisations, such as charities, speaking to the committee at special sessions and responding to the public call for evidence. Our CEO, Tom Purser, gave evidence alongside Professor Ailsa Russell and Dr Sarah Cassidy on March 31st. You can watch that session via Parliament TV, here.
We also saw an incredible opportunity to use our platform as a way for a very large number of community members to be heard and to make sure the key points didn’t get lost in the detail. We therefore reshuffled our workloads to run a survey that reached over 5,000 people and focused on the big picture ‘root cause’ issues like always including autistic people in decisions, setting measurable targets and building in accountability. In this work we amplified and organised community voices, presenting them in a way that would be most likely to be heard and to have impact.
Lampard Inquiry as a chance for ‘root cause’ improvements to mental health care
Lampard Inquiry as a chance for ‘root cause’ improvements to mental health care
We see the Lampard Inquiry as a landmark opportunity to influence another root cause: poor care and treatment of autistic people in mental health settings. The low standard or absence of mental health services reported by many autistic people underpins the autistic mental health crisis and likely the high suicide rate. We are the only autism charity to recognise the potential for this national inquiry to drive improvements in the care autistic people receive, and we have made it a priority to ensure the inquiry team fully understands the role of autism in many mental health care failings. Baroness Lampard’s recommendations for change, likely to be made in 2026, could transform mental health care for everybody, and especially autistic people, but only if somebody makes autism an issue that can’t be ignored. We continue to seek ways to empower autistic people affected by the inquiry to make themselves heard, and to advocate ourselves wherever possible.
Other ways we drive change at a root cause level
Campaigning to Government:
Because laws and policies have such a huge impact on how autistic people are treated across society, for example in health and social care, they can all be seen as ‘root causes’. Some of our work involves identifying which ones are most amenable to change and which ones could improve autistic people’s lives the most. Once identified, we find the best ways to influence them, which may be campaigning ourselves as well as collaborating and empowering other people, groups and organisations to influence them in their own ways, using their own unique skills and networks. In February 2025, our CEO attended the United Nation’s scrutiny of the UK’s commitments under the International Covenant on Economic, Social and Cultural Rights. As a result of our work the United Nation’s committee specifically raised the issue of autism and suicide.
We engage parliamentarians to build support for our work. Our first-ever event in Parliament was held in February 2025, in partnership with the All-Party Parliamentary Group on Health. This event was an opportunity for parliamentarians, policy makers, and people with an interest in supporting our work to hear the latest research, hear from people with lived experience of autism and suicide, and explore how they can join us to make an impact.
Collaborating
We work in partnership with other people who share our ambitions. In 2024 we wrote an Open Letter to the Government to raise the issue of autism and suicide, supported by charities, researchers and people bereaved by suicide. That was part of our battery of collaborative work on suicide prevention, which also features a partnership with Papyrus Prevention of Young Suicide. In July 2025, we collaborated with many organisations and community members to tell the Secretary of State for Health that the delay to the LeDeR report (which learns from deaths) wasn’t good enough (more here).
Addressing data gaps
We identify gaps in data and partner with organisations to address them, such as our work with the National Child Mortality Database. Together we are working to identify what more can be learned from the data they collect and how their process of gathering that data can be improved in relation to autistic people. Where we identify missing information, we are bringing together data and insight that already exists in the public domain and identifying what more can be learned from it. For example, we are undertaking an analysis of Prevention of Future Deaths reports about the deaths of autistic people. These reports are already published but the information is not reviewed regularly or in sufficient detail, so we are working to address that.
