'Picking the best of a bad bunch': Exploring stakeholder perspectives of self-harm assessment tools for autistic adults

Autistic people are at greater risk of self-harm than non-autistic people, yet no tools exist specifically for assessing self-harm in this population. We therefore conducted two focus groups with autistic adults (n = 5) and professionals (n = 4) to examine their perspectives on three existing self-harm assessment tools (Non-Suicidal Self-Injury - Assessment Tool, Inventory of Statements About Self-Injury and Questionnaire for Non-Suicidal Self-Injury). Using a reflexive thematic analysis, we found one overarching theme - 'picking the best of a bad bunch' - where participants acknowledged some strengths of the tools, but multiple limitations outweighed these. Subthemes included cognitive considerations (e.g. complexity, length, working memory demands, introspection), missing elements (e.g. broader self-harm behaviours, functions, context, support) and challenges in conceptualising self-harm, particularly around intentionality and stimming. Participants also stressed the importance of addressing stigma, considering co-occurring conditions like attention-deficit hyperactivity disorder and intellectual disabilities and upholding a duty of care. Overall, findings show that existing self-harm assessment tools are not appropriate or acceptable for autistic adults who self-harm, indicating a clear need for a new self-harm assessment tool developed with and for autistic people.Lay abstractThe perspectives of autistic adults and professionals on existing self-harm assessment toolsSelf-harm is defined as when someone intentionally hurts or poisons themselves, regardless of the reason. This can include suicide attempts as well as behaviours such as cutting, hitting or burning as a way to express or manage difficult feelings. Concerningly, autistic people are more likely to self-harm than non-autistic people, but there are currently no tools specifically designed to assess self-harm in this group. This makes it harder for researchers and service providers to identify autistic people who self-harm and offer the right support or treatment. Previous studies have suggested that three existing self-harm assessment tools could be adapted for autistic people, but it is unclear what autistic adults and professionals think about these tools. We conducted two focus groups: one with autistic adults who have self-harmed and another with professionals who work with autistic people who self-harm. Both groups felt that none of the three tools were suitable for autistic people. They explained that some questions might be harder for autistic people to answer, such as those requiring them to remember specific details or identify their emotions. They also noted the tools missed out on important aspects of the autistic experience, like managing sensory and social overload. Both groups highlighted that self-harm is complex and discussed the overlap with behaviours such as stimming (e.g. repetitive movements or sounds). They emphasised the importance of a supportive approach to self-harm that considers the role of co-occurring conditions, like attention-deficit hyperactivity disorder (ADHD) or intellectual disabilities, and ensures researchers and professionals prioritise participant safety. These findings suggest that instead of adapting existing tools, a new one should be developed specifically with and for autistic people. A tailored tool could help identify self-harm earlier and lead to better support for autistic adults.