Better assessment of post-traumatic stress in autistic adults

Background There are significant mental health inequalities affecting autistic adults: a higher rate of mental health difficulties, negative life experiences, poor access to services, and poor experience of services. Autistic adults often experience traumatic events. However, 'post-traumatic stress disorder' (or PTSD) has been under-recognised, under-researched and under-treated in autistic adults. Clinicians need validated tools to assess mental health problems. There currently is no validated tool for assessing PTSD in autistic adults. Studies indicate that clinicians and autistic adults would highly value a new tool to increase recognition, diagnosis and treatment of PTSD in autistic adults. Aims and objectives This project has four interlinking aims: (1) to better understand PTSD in autistic adults, (2) to develop a new patient-reported outcome measure to assess PTSD in autistic adults, (3) to validate this tool for clinical use, and (4) to pilot and evaluate use of the tool in clinical services. Methods The project will be overseen by an advisory committee including autistic adults. A group of autistic adults will be included throughout work packages (WPs) as co-researchers. International guidelines for measure development will be followed throughout. WP1 will set the scene for the new tool. A 'conceptual framework' of PTSD will be constructed (1) top-down using existing literature and (2) bottom-up using qualitative interviews with autistic adults (N=20). The interviews will be analysed using framework analysis. The provisional framework will be refined through discussion with clinicians and the advisory group. WP2 will involve collaborative development of the new tool with autistic people and clinicians. There will be 'binning and winnowing' of possible items for the tool. Items will be selected and refined for content validity, readability and translatability. The tool will be piloted through 'cognitive interviews' with autistic adults (N=7) and iteratively refined. WP3 will involve validation of the tool over online survey. After initial piloting (N=50), the tool will be presented in an online survey to autistic adults (N=300). Participants will complete a second-wave survey two weeks later to assess test-retest reliability. There will also be assessment sessions with a subsample to complete a structured clinical interview to assess sensitivity and specificity of the tool and identify a clinical cut-off (N=100). Data analysis will involve psychometric validation of the tool using Rasch methods and classical test theory. WP4 will involve training clinicians in sessions co-facilitated with autistic co-researchers. Clinicians will pilot the validated tool in their services and give feedback after 6 months about implementing the tool (N=20). Timelines for delivery The tool will be published online and open-access by the end of the fellowship for immediate use in services. Anticipated impact and dissemination The tool will hopefully be used in routine clinical practice. This will enable accurate recognition, diagnosis and monitoring of PTSD in autistic people and help individuals get appropriate support. The tool will be used in future studies developing and testing trauma interventions for autistic adults. Dissemination plans will be developed with autistic co-researchers. The research will be disseminated through journal articles, conferences, professional networks, and dissemination events.