The aim of this systematic review is to investigate the adaptations made to existing anxiety and mood disorder measures used with autistic adults. It addresses the types of modifications made to such measures, the processes behind them, and the involvement of autistic individuals. Following PRISMA guidelines, the review searched four major databases for studies published in English since 1994 that used mood or anxiety measures with autistic adults. Out of 14,583 identified studies, 32 met the inclusion criteria for reporting adaptations. Data extraction used modified FRAME and GRIPP2 frameworks to capture the nature and justification of adaptations and the role of stakeholder involvement. The review found that only 8% of studies using mood or anxiety measures with autistic adults reported any adaptations, most of which involved using tools developed for children or converting self-report measures to proxy-report without clear justification. Very few studies included psychometric validation of the adapted tools, and only one study explicitly involved autistic adults in the adaptation process. The findings highlight a critical need for transparency in reporting adaptations, involvement of autistic individuals in tool development, and validation of adapted instruments to ensure accurate mental health assessment in autistic populations.
Wilkinson et al. (Mon,) studied this question.