‘I did not think they could help me’: Autistic adults’ reasons for not seeking public healthcare when they last experienced suicidality.

Abstract

With autistic people at increased risk of dying by suicide, understanding barriers to help-seeking is crucial for suicide prevention efforts. Using an online survey designed in consultation with autistic people, we examined reasons why autistic adults living in the United Kingdom did not seek help from the National Health Service (NHS) when they last experienced suicidal thoughts or behaviours. Participants who disaffirmed help-seeking from the NHS (n = 754) were able to select from a prepopulated list of 20 reasons why and to enter their own. The three most commonly endorsed reasons were ‘I tried to cope and manage my feelings by myself’, ‘I did not think they could help me’ and ‘The waiting list is too long – no point’. Endorsement of reasons differed significantly with gender identity, age group and degree of lifetime suicidality. Four themes emerged from analysis of free-form responses: NHS is ineffective, NHS as antagonistic, Fear and consequences and Barriers to access. These findings highlight the need to foster more flexible healthcare systems capable of supporting autistic people, and that autistic people view as trustworthy and effective, to enable help-seeking behaviours with the potential to save lives. Lay abstract Autistic people are more likely than non-autistic people to think about, attempt and die by suicide. For people in crisis, public healthcare services are, in theory, a source of help. In reality, many non-autistic people do not seek help from healthcare services. We wanted to understand why autistic people living in the United Kingdom may not seek help from the National Health Service (NHS) when suicidal and if these reasons differed by characteristics like age and gender. This study tried to answer these questions using responses from a survey co-designed with autistic people about various aspects of suicidal experiences. Participants were able to select from a list of 20 reasons and enter their own explanations (free-form responses) why they did not seek NHS support when suicidal. Our findings show that the most common reasons were that people tried to cope and manage by themselves; they did not think the NHS could help; and they thought the waiting list was too long. Reasons for not seeking help differed by age and gender, as well as lifetime history of suicidal thoughts and behaviour. For example, cisgender women and transgender/gender-divergent participants were more likely to say that previous bad experiences with the NHS prevented them from seeking help, and people with experience of suicide attempts were more likely to have been turned away by the NHS in the past. The free-form responses showed that many participants believed the NHS was ineffective, had previously had negative experiences with the NHS, worried about the consequences of help-seeking and experienced barriers that prevented help-seeking. This work highlights the crucial change and work required to make the NHS safe and accessible for autistic people so they can reach out for help when suicidal.