The Bereaved Voices Project 

What we want to find out 

The research aims to explore contributing factors to deaths by suicide and self-inflicted injury of autistic and possibly autistic people under the care of the NHS.  

Specifically, this study asks:  

The secondary aim of this study is to inform larger research on this topic. We will explore the feasibility and acceptability of conducting more extensive research on this topic in the future. Specifically, this study will ask:  

Why we’re doing this research 

A recent annual report from the National Confidential Inquiry into Suicide and Self-harm (NCISSH) reports that, in the UK, autistic people die more often by suicide whilst under the care of the NHS than non-autistic people, with a threefold increase in deaths amongst autistic people from the period 2011-2014 to 2018-2021 (NCISSMH, 2024). This suggests an urgent need for suicide prevention specifically targeted at the needs of autistic individuals. 

Suicide theory now consistently proposes that distinct factors contribute to dying by suicide, compared to thinking about or attempting suicide . However, studies also suggest that suicide risk factors – and protective factors – in autistic people may be different from those in non-autistic people (e.g. Kõlves et al., 2021). These findings are supported by theoretical studies reporting that suicide theory originating in non-autistic people is less accurate in its explanation of suicide in autistic people . 

Overall, this suggests there is an urgent need to improve the evidence base to understand and prevent death by suicide amongst autistic people in the UK. 

Method

This is a community-based pilot using a mixed-methods psychological autopsy approach – a method that gathers detailed information about a person’s life and circumstances to better understand the factors that contributed to their death.  

Data collection will take place via an online survey, an in-depth semi-structured interview, an adapted 3Di informant interview to explore evidence of possible undiagnosed autism (undertaken only where the participant reports the person who died did not have a formal diagnosis of autism at the time of their death), a subsequent wellbeing check-in with the interviewee, and a final online survey asking about their experience of taking part in the research and their priorities for future research. 

Community engagement

This study has at its core the concerns of those bereaved by the suicide of an autistic person. It was proposed to the Autism Research Centre by Julia Hopper who was instrumental in bringing about the Lampard Inquiry https://lampardinquiry.org.uk/ and has played a central role in shaping the research. Julia Hopper is a co-researcher on this project. 

A lived experience advisory group (comprising a bereaved father, three mothers, one friend, and two sisters) has been recruited to expand the range of voices and experience of suicide bereavement to ensure the study asks meaningful and important questions in a safe and accessible manner. This group has reviewed all components of this protocol, including study aims, materials, support for bereaved people taking part, including consideration of the most vulnerable members of the bereaved community. 

Many members of this lived experience group are themselves autistic, and the research team also includes autistic researchers and researchers who live and work closely with autistic people, including providing support for suicidal thoughts and behaviours. 

Potential impact

This study will contribute to a better our understanding of suicide amongst autistic people, with the ultimate goal of helping to reduce rates of suicide amongst autistic people. It will also help to inform larger-scale data collection on this topic, carried out in a way that is feasible, acceptable and guided by the priorities of the bereaved community. 

Results

We anticipate sharing the results in the summer of 2027. When ready, the key findings will be shared on this page. 

Staff:

Funders:

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