BSMS > Research > Primary care and public health > Sussex Women's Health Research Group > Advancing awareness and early-intervention strategies to improve suicide prevention for autistic adults in Sussex

Advancing awareness and early-intervention strategies to improve suicide prevention for autistic adults in Sussex

Suicide is the primary cause of premature death for autistic people. Statistics clearly indicate the greater risk of death by suicide among autistic people compared to non-autistic people. Research also highlights the need to consider how the intersection of autism and gender identity influences suicidality, with autistic women representing a particularly vulnerable group. The principal aim of this NIHR-funded project is to advance current understanding of the development of suicidality among autistic adults, to guide the development of more appropriate early-intervention strategies that carefully consider the needs of autistic women.

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About the project

Suicide is the primary cause of premature death for autistic people. Increased awareness of the greater risk of death by suicide among autistic people compared to non-autistic people continues to drive the national prioritisation of prevention research and policy development specific to this group. Leading research in the field suggests that known suicide risk factors previously identified for non-autistic people have different effects on the development of suicidality in autistic people, with formerly overlooked risk factors of particular relevance to the autistic community requiring additional attention. Recent research also calls for focused attention on the intersection of autism and gender identity*, with autistic women significantly more likely than non-autistic women to die by suicide, a pattern not observed among men. This project is driven by these intersectional concerns and aims to address them by working directly with autistic adults with experience of mental health concerns.

*This project will explore gender differences in autistic adults’ mental health and wellbeing by comparing the experiences and needs reported by autistic men and women, to move beyond previously dominant masculinised constructions of autism and related implications for associated assessment, service provision and policy development. It is important to acknowledge the significant risk for developing suicidal thoughts and behaviours experienced by trans and non-binary autistic people. However, these under-researched groups merit in-depth consideration falling beyond the particular focus of the current project.

To investigate the development and experience of suicidality among autistic adults, with a focus on how this might differ for autistic women and men, the project will complete three key research activities:

We will collaborate with autistic adults in Sussex and experts in neurodivergence and mental health to develop a greater understanding of how autistic people conceptualise mental health and wellbeing. Focused attention will be given to the experiences and needs expressed by autistic women. This collaboration will result in the co-design of a survey to measure autistic adults’ mental health and wellbeing.
We will assess the current mental health and wellbeing needs of autistic adults in Sussex using the co-designed survey. Analysis of survey responses will include tests to identify potential gender differences, relevant findings providing guidance on dimensions of mental health and wellbeing of particular relevance to autistic women.
We will use digitally-assisted think aloud sessions and individual semi-structured interviews to advance current understanding of autistic adults’ experiences of help-seeking, continuing our focus on potential gender differences. This exploration of the strategies autistic adults utilise when looking for support will inform the production of recommendations to guide the development of more appropriate early intervention resources, with careful consideration given to how best to meet the needs of autistic women.

BACKGROUND IMAGE FOR PANEL

Background to the project

Suicide prevention: a public health priority

National suicide rates have not fallen since 2018, with over 5,000 deaths by suicide in England each year since. Suicide prevention remains a national, regional and local strategic priority. Overall, the suicide rate in Sussex is higher than the national average, with the prevalence of deaths by suicide specific to Brighton and Hove the sixth highest in the country between 2021 and 2023.
Autism and neurodivergence: greater risk of suicidality A number of priority groups have been identified nationally based on evidence indicating their increased risk of non-fatal self-injury and death by suicide. Autistic and neurodivergent people represent one group identified for targeted action. Autistic people are seven times more likely to attempt suicide than non-autistic people, and up to 35% of autistic people have contemplated suicide. Autistic women represent a particularly vulnerable group, with data indicating they are thirteen times more likely than non-autistic women to die by suicide. Research within the field of autism and suicidality suggests suicidal thoughts and behaviours develop differently among autistic people compared to non-autistic people. Consequently, research to support the development of autism-specific suicide prevention also represents a national priority.

Autism rates: national and local prevalence

National statistics indicate that 1.1% of the adult population is autistic, however figures for children are higher (2-3%), which suggests there might be an underestimation of the prevalence in the adult population, possibly linked to underdiagnosis. Based on national figures, the autistic adult population in Sussex is estimated to be 17,522, however here too there is wide level consensus that these figures are also an underestimation. Given the demographic composition and related diversity of the population of Brighton and Hove, there is thought to be a higher prevalence of diagnosed and non-diagnosed autistic adults within the city. Worryingly, increasing demand for neurodevelopmental assessments is lengthening wait times across the country, with current wait times in Sussex ranging from 12-24 months.

Intersectionality: autism, gender identity and suicidality

Advances in autism research have contributed to increased awareness and acceptance that autism tends to present differently in women and men, highlighting the need to look beyond previously prevailing masculinised constructions of autism. Autistic women are more likely to ‘camouflage’ the expression of their autistic traits compared to autistic men due to gendered social norms and related expectations for women to interact in more socially reciprocal ways. The greater prevalence of masking behaviours among autistic women is considered a key factor contributing to their misdiagnosis and/or delayed diagnosis, this potentially having serious negative impacts on the mental health of many of these women, including an increased risk of experiencing suicidality.

Autistic Adults’ Mental Health Alliance for Sussex

Central to this project is the formation of the Autistic Adults’ Mental Health Alliance for Sussex. This alliance comprises autistic adults residing in Sussex with experience of mental health concerns, local autistic community representatives, researchers, health care professionals, charity ambassadors, professionals with expertise in suicide prevention, and commissioners. The collective knowledge and experience of the Alliance will be key to each phase of the project, ensuring the development of the project is meaningfully informed by representative local stakeholder insight.

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Researchers working on this project

Nina Lockwood, Principal Investigator (BSMS)

Richard de Visser (BSMS)

Ayse Aslan (University of Surrey)

Bruce Tamilson (South West London and St George’s Mental Health NHS Trust)

Bernadette Alves (Brighton & Hove City Council)

Project funding

NIHR ARC KSS Future Research Leaders Award (2025-2026)

For more information contact Nina Lockwood (N.Lockwood@bsms.ac.uk).