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

    Co(l)laboratory 2025 PhD Project

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    Key Details

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

    Deadline:11:59pm, 8 December 2024 

    Host University: Nottingham Trent University 

    School/department: School of Social Sciences

    Start date: 01 April 2025 

    Funding offer: Tuition fees covered in full (worth approx. £15k across full PhD programme). Monthly stipend based on £19,237 per annum, pro rata, tax free.

    Working hours: Full-time (minimum 37.5 hrs per week). 

    Working style: Primarily in-person at host university. Flexible working supported. Working pattern to be agreed between successful candidate and lead supervisor.  

    Project Supervisors

    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.  

    This project has been co-created and is supported by researchers from Nottingham Trent University (NTU), the University of Nottingham (UoN) and partners at Autistic Nottingham. The successful candidate for this project will be enrolled at Nottingham Trent University.   

    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. 

    Competencies 

     Co(l)laboratory Core Competencies   
    Category Competency Assessed:
    Application (A), Interview (I) 
    Comprehension and evaluation Strong understanding of the project and its subject matter. A / I 
    Analytical, researcher mindset with keen attention to detail. A / I 
    Communicate complex concepts with clarity and precision. A / I 
    Able to identify connections, patterns, gaps, and irregularities in information/data. I 
    Able to interpret data/information confidently with logic and empathy to derive meaning. I 
    Social and emotional Demonstrable experience of responding effectively changing contexts, information and demands. A 
    Ability to persevere in the face of challenges/failures and to remain constructive in developing solutions. A 
    Demonstrable passion for learning with clear drive and curiosity to undertake this specific research project. A / I 
    Willingness to immerse oneself in the research subject matter and make a contribute to new knowledge through a PhD. A / I 
    Strong desire to make a positive community impact through the research. A / I 
    Willingness to think deeply about complex concepts and engage with academic ideas and theory. A / I 
    Preparedness and potential for success         Experience of working and collaborating effectively with different stakeholders. A 
    High level of self-motivation and ability to work with minimal guidance. A / I 
    Strong organisational and time-management skills with the ability to balance and prioritise multiple tasks. A / I 
    Ability to identify potential challenges and complexities and thoughtfully consider possible solutions.  A / I 
    Able to identify the technical, personal, or professional skills required for a task and take action to develop these. A / I 
    Community Context Genuine desire to undertake community-engaged research over more traditional approaches to research. A 
    Understand the impact of and need for the inclusion of diverse experiences and points of view in research. A / I 
    Appreciation/understanding of the importance of community insight and experience in the generation of new knowledge.  A / I 
    Awareness/understanding of the broader societal context related to the subject matter of the project. A / I  
     Project Specific Competencies   
    Essential Assessed: 
    Application (A), Interview (I)     		Desirable Assessed: 
    Application (A), Interview (I) 
    Understanding and appreciation of the cultural diversity of experiences of autistic adults. A / I Experience in developing and implementing community support programmes or initiatives. A / I 
    Ability to engage with sensitive topics with empathy and compassion. A / I Professional, voluntary or personal experience working with neurodiverse individuals. A / I 
    Knowledge of the challenges relating to support for autistic adults. A / I Understanding of relevant research methods.A / I  
    Apply here

    References for Further Reading 

    1. Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of autism and developmental disorders, 46, 3281-3294. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5040731/
    2. French, B., Daley, D., Perez Vallejos, E., Sayal, K., & Hall, C. L. (2020). Development and evaluation of an online education tool on attention deficit hyperactivity disorder for general practitioners: the important contribution of co-production. BMC Family Practice, 21, 1-10. https://bmcprimcare.biomedcentral.com/articles/10.1186/s12875-020-01289-5
    3. Lilley, R., Lawson, W., Hall, G., Mahony, J., Clapham, H., Heyworth, M., … & Pellicano, E. (2022). ‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood. Autism, 26(6), 1395-1408. https://www.researchgate.net/publication/355504469_’A_way_to_be_me’_Autobiographical_reflections_of_autistic_adults_diagnosed_in_mid-to-late_adulthood
    4. Lilley, R., Lawson, W., Hall, G., Mahony, J., Clapham, H., Heyworth, M., … & Pellicano, E. (2023). “Peas in a pod”: Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults. Journal of Autism and Developmental Disorders, 53(3), 1146-1161. https://link.springer.com/article/10.1007/s10803-022-05667-z
    5. Nottingham and Nottinghamshire Integrated Care (2022). All Age Autism Strategy. https://www.nottinghamshire.gov.uk/media/5077576/icsallageautismstrategy.pdf 
    6. Sonido, M., Arnold, S., Higgins, J., & Hwang, Y. I. J. (2020). Autism in later life: What is known and what is needed? Current Developmental Disorders Reports, 7, 69-77. https://link.springer.com/article/10.1007/s40474-020-00192-z