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Responding to post-diagnostic support needs for late-diagnosed autistic adults in Nottingham(shire) 

    Cohort 2025 PhD Project

    About The Project

    Autism is a lifelong condition that can be missed until mid-to-late adulthood. In Nottingham and Nottinghamshire, the number of adults with a confirmed autism diagnosis is estimated to rise from 7,135 in 2022 to 10,410 by 2025 (Nottingham and Nottinghamshire Integrated Care System, 2022). These numbers may not include people who pursue a diagnosis through private sectors, which do not routinely feed their diagnoses back to general practitioners (GP; Russell et al., 2022). While a pre-diagnostic support service has been commissioned in Nottingham and Nottinghamshire, post-diagnostic support is still limited due to diagnostic assessments being the priority of local services (Nottingham and Nottinghamshire Integrated Care System, 2022).   

    Our pilot study conducted in 2024 suggested that most adults who received an autism diagnosis in Nottingham/shire were only provided with a leaflet signposting a few local organisations, such as Autistic Nottingham, which is a not-for-profit organisation run for and by autistic adults without learning disabilities. Few were offered post-diagnostic support sessions by the Neurodevelopmental Specialist Service (NeSS) of the Nottinghamshire Healthcare NHS Foundation Trust. As such, Autistic Nottingham constantly receives requests from newly diagnosed autistic adults across Nottingham(shire) for post-diagnostic support. Nottingham/shire is clearly facing a rising unmet need of post-diagnostic support for autistic adults.  

    Currently, there are over 350 late-diagnosed autistic adults across Nottingham(shire) who have expressed interest in enrolling on a post-diagnostic course which Autistic Nottingham requires support to co-create with local academics, given that very little is known about late-diagnosed autistic adults who are very underrepresented in research. There is an urgent need to understand the post-diagnostic support needs of late-diagnosed autistic adults and how best to support them. This collaboratively developed project aims to understand the post-diagnostic support needs of late-diagnosed autistic adults and co-create an autistic-led programme to support late-diagnosed autistic adults.  

    Project Aims 

    This project aims to address the unmet needs of late-diagnosed autistic adults by:  

    1. understanding their post-diagnostic support needs,   
    1. co-creating an autistic-led programme to support them, and  
    1. evaluating its feasibility and acceptability.  

    This project will thus provide evidence-based resources and recommendations to support late-diagnostic autistic adults in Nottingham and Nottinghamshire. There will be implications to not only clinical practice but also policy and research for this underrepresented and underserved population. 

    Project Team