Community Priorities for Preventing Suicide in Autistic People: An Approach to Guide Policy and Practice

Abstract

Background:

Suicide is a leading cause of death for autistic people worldwide, but there is remarkably little research addressing suicide prevention strategies in this group, and virtually none that asks autistic people what they need and want.

Methods:

Overall, 3962 autistic people and 627 people who supported or were bereaved by the suicide of an autistic person (>95% UK-based) participated in our online surveys. We garnered their ideas for policies and interventions to prevent suicide in autistic people (Phase 1). We thematically analyzed 2373 suggestions, distilling these into 63 ideas which an independent sample prioritized (Phase 2). We identified shared and differential priorities between participants.

Results:

Across two samples of autistic and non-autistic people, differences were overshadowed by consensus on necessary pathways to suicide prevention. Paramount among these were the upskilling and resourcing of healthcare services to deliver timely, autism-specific support, and the improvement of diagnostic services, ensuring autistic people not diagnosed in childhood are assessed accurately, quickly, and with sensitive post-diagnostic care. Other priorities, across phases, emphasized a social, societal response to suicide in autistic people, one where reducing stigma and providing social support were favored over crisis apps, and where support should be embedded across the life course in relation to education, employment, and social care in the community.

Conclusion:

While UK-centric, the findings corroborate international calls for autism-specific support for people in crisis, delivered by those with specialist knowledge. These results also highlight the relationship between suicide prevention and timely autism diagnosis, and the essential need for post-diagnostic care. Mirroring shifts in national and international suicide prevention policy, participant priorities extend the focal point of suicide prevention beyond individuals in crisis, emphasizing the need for coordinated, multisector efforts to address systemic societal determinants of suicide: a strategic and expansive perspective thus far lacking in an autism context.

Community Brief

Why is this an important issue?

Suicide is a leading cause of death for autistic people, but there is virtually no research exploring how it can be prevented. To design approaches that are helpful and relevant to this group, we must understand the ideas, needs, and desires of autistic people and those who support and/or advocate for them (henceforth “supporters/allies”) with regard to ways to reduce the number of autistic people who experience suicidal thoughts and die by suicide.

What was the purpose of this study?

We wanted to hear ideas for ways to prevent suicide from autistic people and supporters/allies. We moreover wanted to identify which of these ideas were community priorities for reducing the suicide rate in autistic people.

What did the researchers do?

We conducted a two-phase study using two online surveys, both designed with feedback from autistic people and supporters/allies. In Phase 1, we asked autistic people and supporters/allies for their ideas for policies and interventions to prevent suicide in autistic people. We analyzed 2373 free-text responses and distilled these into 63 concrete ideas. In Phase 2, we asked a larger number of autistic people and supporters/allies to select their priorities. Altogether, 3962 autistic people and 627 supporters/allies participated in the two phases of the study, most (>95%) from the United Kingdom.

What were the results and conclusions of the study?

Across over 4000 people, autistic and non-autistic alike, there was strong agreement about the most important routes to suicide prevention in both phases of the study. Chiefly, participants highlighted that healthcare professionals should receive better training to respond quickly and appropriately to autistic people in crisis, and that autism-specific, tailored approaches are needed. Participants also felt that preventing suicide in autistic people depends, in part, on ensuring that undiagnosed autistic people are diagnosed quickly, accurately, and sensitively, and given suitable post-diagnostic support. Their priorities indicate that thinking about suicide prevention needs to move beyond focusing exclusively on people who are already in crisis. In addition to crisis measures, suicide prevention requires a broad and social focus, tackling autism stigma and discrimination, ensuring autistic people are accepted and supported in society, and that they have equal access to education, employment, health, and social care throughout their lives.

What is new or controversial about these findings?

There is virtually no research on ways to prevent suicide in autistic people, and extremely few published scientific articles that ask autistic people for their opinions on this matter. We believe ours is the first study to systematically identify and prioritise autistic people’s ideas for specific policies and practices for suicide prevention.

What are potential weaknesses in the study?

The priorities identified by our samples might not be shared by autistic people with learning disabilities, people of color, or people from other countries.

How will these findings help autistic adults now or in the future?

The ideas and priorities of autistic people and their supporters/allies offer governments concrete ways to prevent the development of suicidal crises in autistic people and help those who reach crisis point.