Newell, Victoria
(2025)
Developing a new self-harm assessment tool with and for autistic adults.
PhD thesis, University of Nottingham.
Abstract
Research indicates that autistic individuals and those with high autistic traits are more likely to self-harm than non-autistic individuals. However, it remains unclear which, if any, self-harm assessment tools are available to assess self-harm in autistic adults. As a result, researchers and service providers struggle to accurately identify these difficulties and recommend appropriate support and treatment.
This thesis aims to develop a new self-harm assessment tool in collaboration with and for autistic adults across four empirical studies using mixed methodologies. First, a systematic review applying the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) identified frequently used self-harm assessment tools for autistic and general population adults and evaluated their measurement properties (Chapter 2). Second, perceptions of existing self-harm assessment tools were explored through focus groups of autistic adults with lived experience of self-harm and the professionals who support them (Chapter 3). Third, two rounds of cognitive interviews with autistic adults with lived experience of self-harm informed the development and refinement of a new self-harm assessment tool (Chapter 4). Finally, an online survey was used to pilot the newly developed tool in autistic adults with lived experience of self-harm and assess its preliminary measurement properties (Chapter 5).
Findings revealed that no existing self-harm assessment tools had been specifically developed or validated for autistic adults (Chapter 2). Moreover, autistic adults and the professionals who support them reported that existing self-harm assessment tools were neither appropriate nor acceptable for this population (Chapter 3). Over two rounds of cognitive interviews, the first self-harm assessment tool for autistic adults was co-developed: the Self-harm Questionnaire – Autism (SHQ-A). Key issues related to item clarity, relevance, and representativeness were identified and addressed (Chapter 4). Additionally, preliminary evidence for measurement properties of the new tool was promising across content validity, structural validity (exploratory factor structure), internal consistency, test-retest reliability, and construct validity (convergent and divergent) in autistic adults with lived experience of self-harm (Chapter 5).
Therefore, this thesis highlights significant gaps in our understanding of self-harm in autism and underscores the importance of co-producing measurement instruments with autistic populations. Key strengths included the mixed methods approach and community involvement, while limitations of online research and sample representativeness are discussed. Overall, the findings have important implications for identifying and understanding self-harm in autism across research and clinical practice, along with recommendations for policy. However, further research is needed to validate the SHQ-A (i.e., confirmatory factor analysis) and adapt it for other populations, such as autistic youth and those with co-occurring ID.
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