Autistica

We work with autistic people to understand their priorities for research so that we can make a difference at every stage of their lives.

Mental health and suicide prevention is a top priority for the autism community. We are funding research in this area and campaigning for other funders to follow our lead. Alongside research, we are collaborating with partner organisations to improve services and campaigning for policy change.

How does your organisation contribute to preventing suicide and supporting those affected by it?

Autistic people are 9 times more likely to take their own lives than non-autistic people. Research also suggests that autistic women are more likely to die by suicide than autistic men – a reverse of the gender split we see in the non-autistic population. There is a crucial need to understand this group better and look at how we can adapt existing services to meet their needs. Currently we are: 

Developing better evidence 
There hasn’t been enough research on suicide and autism. That makes it difficult to make policy and services more effective. In 2017 we brought people across the community together for the first international summit on suicide and autism to decide the way forward. As a result we have: 

– Funded researchers to work with people who have lost autistic loved ones to suicide to explore the circumstances around those deaths. Dr Cassidy and her team are also working with autistic people who have had suicidal thoughts to understand their experiences. 

– Supported Dr Sarah Cassidy and Dr Jacqui Rodgers to continue working with autistic people to determine the top research and policy priorities for preventing suicide in our community. The project asked autistic people and bereaved families about their priorities. 

Connecting prevention services to autistic people 
Some autistic people can struggle to access support if they’re in a crisis, so we’re ensuring other organisations that care about suicide prevention are considering autistic people’s needs: 

– We’ve created a crisis resource for people supporting autistic young people who are experiencing a mental health crisis. This was  developed in collaboration with Dr Sarah Cassidy, Professor Jacqui Rodgers, Dr Debbie Spain and Dr Marinos Kyriakopoulos. 

– We’ve conducted training with NHS England, Samaritans and council staff who may work with autistic children or adults experiencing a mental health crisis.  

– We’ve also connected Samaritans with autistic people, to help them explore how they can make their services more accessible. 

Improving public policy 
We were the first to bring suicidality in autism into the public eye in the UK in 2016; tackling early death later became the top priority in the Department of Health and Social Care’s Autism Strategy. 
 
We successfully campaigned for the Government and NICE to recognise autistic people as a high-risk group for suicide. 
 
We now advise Government and NHS bodies on improving support for autistic people experiencing suicidal thoughts using the latest evidence. 

What are your current priorities?

We plan to continue to raise public and media awareness of the very high prevalence of suicide and suicidal thoughts among autistic people and build new links with organisations and individuals already active in suicide prevention to explore ways to support this under-served population. 

What challenges are you currently facing?

Suicide in autism is a new and very under-researched area and there are few researchers with backgrounds in both fields. There is a clear need for capacity building to ensure that world class research proposals are developed and funded. 

More research is needed to confirm the scale of the problem and suggest potential solutions. Many autistic adults are undiagnosed. For those that are, their diagnosis does not show up in suicide data. The data that we do have on prevalence and gender split is from a Swedish population study. 

The chronic under-funding of autism research, the sensitivity of the topic and the lack of good quality national and regional data on autism all present challenges to rapidly increasing the quality and quantity of research.