What we do
The problem
Autistic people are being failed, with devastating consequences. This can’t go on.
No matter their needs or circumstances, our research has found one unifying experience that all autistic people face – being marginalised, discriminated against, and let down by society.
This is seen across almost every aspect of autistic people’s lives.
Devastating delays for autism assessment – In June 2025, there were 236,225 people on waiting lists for autism assessment in England alone. 211,104 had been waiting at least 13 weeks, despite the target of 91 days published by the National Institute for Health and Care Excellence (NICE). Anecdotally, we know thousands of children, young people and adults have waited years for assessment.
Our 2025 survey* of over 5,000 people found that 79% believed autism assessment in the NHS is ‘bad’ or ‘very bad’, with most saying this is getting worse.
Years of going undiagnosed and therefore not receiving appropriate support, particularly in childhood, can have serious long-term effects and contribute to increased risk of suicide.
Lack of support following diagnosis – Even when a diagnosis is made, many autistic people and their parents and carers tell us there is no support available after that diagnosis. In 2023, the Autism Alliance found that “thousands of autistic adults across England are not receiving the social care they need, preventing them from living well and actively in their communities, and from taking up work.”
High suicide rates – Autistic people are at least eight times more likely to die by suicide than non-autistic people. In our survey*, 86% of people believed suicide prevention in relation to autistic people is ‘bad’ or ‘very bad’.
Reduced life expectancy – Autistic adults die years younger than non-autistic adults and that gap is even wider for autistic people with a learning disability. Many preventable deaths occur in relation to autistic people receiving poor care in health settings. Despite this being known for decades, Government action is weak, with the annual initiative tasked with addressing the issues currently almost a year overdue.
Poor mental health – 80% of autistic people suffer from mental health problems including severe anxiety and depression. This compares to 25% of the general population. A shocking 87% of those responding to our survey* said that mental health care in the NHS is ‘bad’ or ‘very bad’ – with over half saying it is very bad.
Lack of appropriate educational opportunities – According to the National Autistic Society in 2021, 74% of parents say their child’s school does not meet their needs. This figure had doubled since 2017.
Unemployment – Just 30% of autistic people of working age are in employment meaning the majority are living below the poverty line.
* more details about our survey will be published later in 2025
Our approach: evidence-based collaboration to drive change
By commissioning breakthrough research, working with the world’s leading academics, including Cambridge University’s Autism Research Centre, and bringing that together with the real-life experiences of autistic people, we’re building evidence that can’t be ignored.
High quality evidence is vital when we’re making a case for change, but evidence does not achieve that change by itself. We also work to improve and scale up successful and promising approaches, squeezing maximum impact from the good practice already being done by so many. And we campaign from a position of authority, working with autistic people and their families to mobilise action and send strong messages to those who have the power to make change happen, whether that’s the Government, the NHS or the systems that impact autistic people’s daily lives. We are unafraid to challenge the status quo and to push for action.
Most importantly, we work in partnership with those who can make change happen as quickly as possible, taking opportunities to use our evidence to help fill gaps in support rather than waiting for others to act. And we want to see our communities and our charity sector move past the current state of disempowerment. We want a strong community, and strong charities, working together on the many different aspects of the same underlying problem. None of us can do this alone.
We’re here to make a difference.
We’re Autism Action.
Campaigning
We know that urgent change is needed to save lives and increase inclusion, acceptance and respect for autistic people. We deliver evidence-led campaigning, but what does this mean? We believe in bringing together research and data with the real experiences of autistic people and their families to create powerful cases for change.
This means working to change the laws that most directly impact autistic people. Sometimes it means changing the policies that operate at a national or local level, other times it is about ensuring that the laws and policies that already exist are actually being implemented and followed.
Making these things happen involves using lots of different campaigning methods to share our evidence and apply pressure to achieve change. Here are some ways we are doing this:
- 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.
- We take opportunities to speak to the media to increase awareness and understanding of the challenges facing autistic people.
- 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 insight gaps exist, we are bringing together data and insight that already exists in public and identifying what can be learned from it. We have undertaken an analysis of as many Reports to Prevent of Future Deaths that we could identify that were about the deaths of autistic people.
- We also identify opportunities to keep awareness of the issues high and to place pressure on the system to respond. 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.
Parliamentary Events
We engage parliamentarians to build support for our work. Our first-ever event in Parliament will be held in partnership with the All Party Parliamentary Group on Health. This event will be 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.
The Lampard Inquiry
We are also engaging directly with the Lampard Inquiry, the UK’s first statutory inquiry into deaths in inpatient mental health settings. We believe a significant proportion of the more-than 2,000 deaths in Essex that fall into the inquiry’s remit will have been of autistic people. We are committed to seeing that the inquiry takes the opportunity to understand why autistic people died in inpatient settings and make clear, national recommendations to stop similar practices happening elsewhere in the UK.
In 2025 we will be bringing all these campaigning activities together and asking all autistic people, their families and loved ones, and the general public, to join our fight to make change happen to save lives. To be kept up to date on our activities please sign up to receive our newsletter.
