‘My Answers Don’t Fit Your Options’: Measuring Self-Harm With Autistic People Using the Self-Injurious Thoughts and Behaviours Interview (SITBI)

Abstract

Autistic people are a high-risk group for suicide, and self-harm is one of the strongest predictors of death by suicide among autistic people. There are no validated measures to assess self-harm with or without suicidal intent among autistic people. We aimed to describe the challenges reported by autistic people when completing the Self-Injurious Thoughts and Behaviours Interview (SITBI) and researchers’ experiences of supporting them. We undertook thematic analysis of feasibility interview transcripts from a pilot randomised controlled trial of autism-adapted safety plans carried out in the United Kingdom. One theme, ‘Reaching an authentic answer’ overarched three subthemes: ‘Conceptualising suicidal plans’; ‘Defining parameters of suicidal thoughts’; and ‘Capturing self-harm’. Researchers validated autistic experience and developed trusting partnership with participants to overcome ambiguous language and a lack of valid response options. Data were gathered on an opportunistic basis, rather than with this intended purpose, meaning this may not constitute an exhaustive survey of this issue. Researchers can support autistic people to report self-harm using the SITBI and other measures designed with non-autistic people in mind by clarifying the meaning of questions and working collaboratively on a response that matches participants’ experience. Researchers and clinicians should validate autistic experiences of self-harm and suicidality.

Lay Abstract

The U.K. government has said that autistic people are a very important group for avoiding suicide. Self-harm often leads to death by suicide, but there are no questionnaires that definitely measure self-harm in autistic people. This means that the way that questionnaires ask about self-harm may not include relevant questions and may not ask about things that are important to autistic people. In our study, autistic people did a questionnaire that is often used to measure self-harm called the Self-Injurious Thoughts and Behaviours Inventory (SITBI). We found out about challenges that autistic people had in understanding and responding to the questions. This was part of a larger project, which tested a suicide safety plan that was adapted for autistic people. There was one overall challenge (called an over-arching theme) for autistic people, which was about being able to give honest answers to the SITBI questions with the options given on the questionnaire. Within this, there were three specific challenges (called subthemes), which were about: (1) explaining own meaning of suicide plan within the choice of answers given (called ‘conceptualising suicide plans’); (2) explaining what suicidal thoughts are like showing with the choice of answers given (called ‘defining parameters of suicidal thoughts’); and (3) explaining what self-harm is like with the choice of answers given (called ‘capturing self-harm’). Researchers helped autistic people to answer the questions in four different ways: (1) by showing they understood the person’s experience; (2) by working together with trust; (3) by explaining unclear language; and (4) by helping them to choose answers. We did not set out to get this information when we did the larger project. This work shows researchers that self-harm can be different for autistic people compared to non-autistic people.