Autistic Adults’ Expectations for Post-Diagnostic Support
Research type
Research Study
Full title
Exploring Autistic Adults' Preferences and Expectations for Post-Diagnostic Support
IRAS ID
358845
Contact name
James Temple
Contact email
Sponsor organisation
Mersey Care NHS Foundation Trust
Duration of Study in the UK
0 years, 6 months, 24 days
Research summary
Following the rise in autism diagnoses amongst adults in the United Kingdom (UK; Russell et al., 2022), access to post-diagnostic support (PDS) for autism is a high priority. PDS has been funded in most National Health Service (NHS) trusts and is widely available, with most trusts offering group psycho-educational programmes as the main form of support (Norris et al., 2024). Yet with this expansion, many clinicians have had to quickly develop and utilise PDS interventions within services without consulting stakeholders. This approach is concerning as clinicians who have developed PDS might not be autistic themselves, so programmes might not align with the specific needs and expectations of autistic adults (Freeth et al., 2023). Furthermore, some interventions lack clearly defined goals and research has not shown these to be useful or effective (Norris et al., 2024). Moreover, most studies that have evaluated the efficacy of PDS interventions (or PDS services) have not included much stakeholder involvement in their development (e.g., Crane et al., 2021; Crane et al., 2023; Beresford & Mukherjee, 2024; Hull et al., 2024). As a result, there is little evidence from direct consultations with autistic adults about what types of PDS they want, and what they want to receive from PDS (i.e. the goals of PDS). Therefore, it is a high priority to explore autistic adults’ views about the type of PDS autistic adults want through direct consultation. Using qualitative (focus groups) and quantitative (online questionnaire) methods, we hope to address this gap to develop high quality, person-centred PDS that reflects the needs of autistic adults.
REC name
London - Bloomsbury Research Ethics Committee
REC reference
25/LO/0823
Date of REC Opinion
19 Dec 2025
REC opinion
Further Information Favourable Opinion