'The best way we can stop suicides is by making lives worth living': a mixed-methods survey in the UK of perspectives on suicide prevention from the autism community.

Abstract

Background Autistic people are at higher risk of dying by suicide than are non-autistic people, but research focused on suicide prevention in autistic individuals is lacking. We aimed to understand, from autistic people and those who support them, the pathways to suicide prevention, the balance of crisis measures vs. longer-term prevention, the importance of formal diagnosis, and the role of co-design and co-production in suicide prevention activities. Methods We undertook a mixed-methods, two-phase online survey focused on the priorities, views and perspectives of autistic people and their supporters/allies on approaches and strategies to prevent suicide. In Phase 1 (Jan 10–July 31, 2024), via the first survey, we collected and thematically analysed ideas for suicide prevention from almost 1200 autistic people and more than 200 people who identified as supporters and/or allies of autistic people. In Phase 2 (reported herein), a larger group of participants rated and ranked these ideas via a second online survey, during which we collected qualitative and quantitative data. Participants were UK residents aged ≥16 years who self-identified as being in one or more of the following groups: autistic; someone with experience supporting an autistic person of any age or ability; and/or someone with experience of bereavement by the suicide of an autistic person they supported. The online survey included closed-ended and open-ended (qualitative) questions. We thematically analysed free-text responses, and computed descriptive statistics for closed-ended questions. Findings Between Nov 1, 2024, and Jan 31, 2025, 2778 individuals responded to the online survey (Phase 2), comprising 2463 autistic people and 315 non-autistic people who identified as supporters/allies of autistic people, some of whom had been bereaved by the suicide of an autistic person. Although some participants reported that crisis interventions (eg, dedicated helplines) were most urgent, a greater number prioritised larger-scale preventative measures (eg, improving support in schools) to address systemic inequalities, which some participants perceived as the root of suicidal thoughts. Across their qualitative and quantitative responses, most participants recommended providing support to people awaiting autism assessment, but some were less supportive of providing dedicated autism supports to people who self-diagnose or who are questioning a possible autistic identity. The qualitative and quantitative data suggested that most participants viewed co-design and co-production of interventions and initiatives to prevent suicide as vital for ensuring these reflect the expertise and empathy that autistic people could bring to individuals struggling with similar experiences. Interpretation This qualitative work with experts by experience supports that suicide in autistic people should be viewed in the context of pervasive and systemic injustices, rather than individualistic psychopathology. Accordingly, the extent to which crisis interventions can reduce suicide rates is contingent on additional systemic, preventative, and coordinated actions to tackle the social determinants of suicide and support enduring wellbeing in this group. Support should be produced in partnership with autistic people and their advocates, and be needs-based rather than diagnosis-based. In future research, researchers, practitioners, and policymakers should develop community partnerships to facilitate co-development of strategic, multi-level action plans and initiatives for suicide prevention.