“A Combination of Everything”: A Mixed-Methods Approach to the Factors that Autistic People Consider Important in Suicidality

Abstract

Background:

Suicide is a leading cause of death for autistic people, but it is inadequately explained by theories derived in non-autistic populations. Autistic people’s perceptions of the factors underpinning suicidal experiences are vital for guiding conceptual understanding, risk assessment, and policy and clinical practice toward preventing suicide.

Methods:

We recruited 1369 autistic participants for an online survey designed through consultation with autistic people. Participants were 326 cisgender men, 718 cisgender women, and 325 transgender or gender-divergent individuals, ranging from 16 to 89 years old. We asked them to rate the importance of 19 contributing factors to their suicidal thoughts and feelings and to enter their own explanations of additional factors if desired. Alongside thematically analyzing this qualitative data, we examined whether ratings of contributing factors differed by age and gender and whether ratings statistically predicted levels of lifetime suicidality.

Results:

Loneliness, feelings of worthlessness/failure, hopelessness, and mental illness were the highest rated contributing factors to suicidal thoughts and feelings, particularly by autistic women and sex/gender minorities; ratings also differed by age. Qualitative responses indicated the complexity of suicidality, wherein autistic status influenced both the nature of the stressors (e.g., societal stigma) and cognitive-emotional states (e.g., feeling disconnected through feeling different to others) that participants identified. Greater perceived importance of bullying, difficulties accessing support, and past trauma characterized participants with experience of suicide plans or attempts.

Conclusion:

While some of the experiences and mental states identified by participants resembled those identified in non-autistic groups, the psychological profile of autistic participants and their experiences of marginalization appeared to heavily contextualize expressions of hopelessness, burdensomeness, worthlessness, loneliness, and entrapment. Autistic people vary with regard to the factors perceived to underpin suicidality. However, associations between suicidality and the perceived importance of bullying, trauma, and inability to access support highlight the necessity of societal and systemic change to prevent suicide.

Community Brief

Why is this an important issue?

Autistic people are more likely to die by suicide than non-autistic people. To change this, we need to understand why suicidal thoughts and feelings are relatively common in autistic people and why some end their lives.

What was the purpose of this study?

As part of a larger project about suicide prevention, we wanted to hear from autistic people themselves about the factors that contributed to their suicidal thoughts and feelings. Second, we wanted to see if these contributing factors differed across autistic people of different genders and age-groups. Third, we wanted to see if these contributing factors were different in autistic people who had attempted suicide.

What did the researchers do?

We designed an online survey, drawing on feedback from a large group of autistic people. The survey included 19 factors that might contribute to suicidal thoughts and feelings, which were based on existing research and suggestions from autistic people in the design phase. We asked survey participants to rate the importance of these factors and describe additional factors in their own words. Altogether, 1369 autistic people took part.

What were the results and conclusions of the study?

We found that loneliness, hopelessness, feelings of worthlessness or failure, and mental illness were rated as the most important factors contributing to suicidal thoughts and feelings. In their own words, participants said that suicidal thoughts and feelings were caused by the stress of major life events; by the strain of everyday living without support; by instances where they were victimized by others, including professionals; and by societal stigma and constant pressure to mask. Autistic people of different genders and ages differed in the factors that contributed to their suicidal thoughts and feelings. For example, cisgender women and gender-divergent participants rated being unable to access support, difficulties with family/friends, past trauma, and mental illness as more important than did cisgender men. Autistic people who had attempted suicide tended to highlight the importance of past trauma and inability to access support.

What is new or controversial about these findings?

We believe ours is the first study to directly ask autistic people about the factors that contributed to their suicidal experiences. Having a large sample meant we could look for differences related to age and gender. Our findings place responsibility for change on society and systems rather than viewing suicidal thoughts as a kind of sickness or abnormality in autistic people.

What are potential weaknesses in the study?

We cannot confirm that the contributing factors identified by autistic people really did cause their suicidal experiences. Our findings might not be relevant to 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 findings highlight that society needs to change in order to reduce suicide in autistic people. Specifically, governments must tackle the stigma and abuse that can traumatize autistic people and ensure they have sufficient and appropriate support.