Suicidality and autism

Aims:

This project involves multiple studies that aim to identify:

  1. Which autistic people are at the highest risk of suicidality
  2. What factors increase the risk (risk factors) or reduce the risk (protective factors) of suicide amongst autistic people
  3. What could have been done to prevent a suicide attempt?
  4. What services and supports autistic people with a history of suicidal thoughts and feelings experience as helpful
  5. Gaps in healthcare for autistic people experiencing suicidality

Background:

Autistic people experience far higher rates of suicidal thoughts and feelings than other people: a 2023 study estimated that 1 in 4 autistic people has planned or attempted suicide (Newell et al. 2023). Those who die by suicide serve as a tragic reminder of the challenges that autistic people still face and highlight the urgent need for more research that can inform suicide prevention for autistic people.

Method:

The studies within this project include:

  1. Surveys to learn from autistic people, autistic people who have struggled with suicidal thoughts and feelings and supporters of autistic people to understand about risk factors, protective factors, efforts to seek support, and suggestions for improved support services. The ideas from the communities described above will  inform a second survey which will ask people to prioritise them into those they feel will have the most impact on helping autistic people in distress and reduce the number of deaths by suicide;
  2. Working with Matthew’s Campaign, we will work with the families of autistic or potentially autistic people who are suspected to have died by suicide while under the care of the Essex Partnership University NHS Trust (see here for more details);
  3. Surveys involving people worldwide who have been bereaved by the death of an autistic friend or family member to understand risk and protective factors, gaps in support services, and what could have been done by support services to prevent the death;
  4. Collaboration with mental health services widely used in the UK to learn more about autistic users of their service and how to tailor these services to provide specialised support for autistic people struggling with their mental health;
  5. Analysis of anonymised medical records in the NHS Clinical Practice Research Datalink (CPRD) to understand whether autistic people are failing to receive support despite making contact, or if they are not appearing in the system at all until reaching crisis, and whether they received support. CPRD is a database provided by the Medicines and Healthcare products Regulatory Agency (MHRA), with support from the National Institute for Health Research (NIHR), as part of the Department of Health and Social Care. CPRD collects patient data from participating GP practices across the UK. It is ‘anonymised’, which means that there is no information that can identify people. CPRD never receives data such as name, address, NHS number, full date of birth or medical notes. More information can be found via the CPRD website and individuals can opt out of their data being used in this way via www.nhs.uk/your-nhs-data-matters/.

We will put measures in place to ensure that people who take part in these projects are kept safe. This will include trigger warnings about sensitive topics, lists of resources that participants can obtain for support, escape buttons so that participants can exit surveys quickly with redirection to support resources.

Further details about these studies will be provided as each study launches. 

Results:

These studies began in 2024. Results will appear on our website as they become available.

Importance:

By learning directly from autistic people, those bereaved by the suicide of an autistic person, and healthcare records, this program of research will collect valuable information to inform suicide prevention strategies tailored to support autistic people. This triangulation of information sources will ensure that we are not overlooking any key information in our aim of reducing the number of autistic lives lost to suicide.

Relevance:

Previous research from the Autism Research Centre (Cassidy et al 2014; Cassidy et al 2022) has been cited in the UK National Suicide Prevention Strategy identifying autistic people as one of the highest risk groups for suicide. Our research has directly impacted UK national policy on suicide prevention, and we hope to continue to influence changes in support services for autistic people via this new research programme.

Funding

The Autism Centre of Excellence at Cambridge (ACE)

Do you need help?

If you are experiencing suicidal thoughts or feelings, please reach out for help. The following may be helpful:

In the UK:

Outside the UK:

Engagement

For each project within this programme of research, community engagement is planned or ongoing. For example, we are working with family members of autistic people who died by suicide under the care of an NHS Trust in Essex and will co-design the project with them. Another example is that we have conducted two focus groups with members of the autism community focusing on the acceptability of obtaining data from the Clinical Practice Research Datalink to explore access to healthcare for autistic people experiencing suicidality. We have formed an Advisory Committee, comprising of experts in the field of suicide research in autism. This includes people with lived experience of suicide in their families. The purpose of the Committee is to advise us throughout the course of the research programme.

Staff Members

Tanatswa Chikaura
Holly Hodges
Dr Sarah Marsden
Dr Tanya Procyshyn
Dr Elizabeth Weir
Dr Carrie Allison
Dr Mirabel Pelton
Dr Rachel Moseley
Prof Simon Baron-Cohen

Selected Publications

Staff:

Funders:

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