Invisible Needs and Uneven Recognition: A National FOI Study of Autism Support Across Diagnostic Stages in U.K. Universities

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Cross, K., Knott, F., & James, A. I. (2026). Invisible Needs and Uneven Recognition: A National FOI Study of Autism Support Across Diagnostic Stages in U.K. Universities. Autism, Article 13623613261489841. https://doi.org/10.1177/13623613261489841

Publication date: 8 Oct 2026 Added to AutiHub: 17 Oct 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
3
Publication authors identified as autistic
1 / 3 (33.3%)

Abstract

This study investigates how universities in the United Kingdom identify and support autistic students across three groups (diagnosed, seeking diagnosis, self-identifying without wishing to pursue a diagnosis). In addition, it examines communication practices and interim adjustments. Freedom of Information (FOI) request questionnaires, issued under Freedom of Information Act (FOIA) 2000 and FOI (Scotland) Act 2002, were submitted to 142 publicly funded U.K. universities, generating 125 valid responses (88%). The 77-item FOI questionnaire comprised multiple-choice and open-text items. Data were analysed descriptively and using qualitative content analysis. Results revealed 50% of institutions reported data on formally diagnosed autistic students, 16% on students seeking diagnosis and 7% on students who self-identify without wishing to pursue diagnosis. Only 2% of universities reported formal policy guiding disability staff when responding to undiagnosed autistic students. The findings suggested that institutional practices varied across universities and by diagnostic group. Staff judgement and discretion mostly determined availability of support and adjustments. Support was frequently dependent upon diagnostic evidence. Reliance on individual staff decisions may contribute to variability in support across the three groups of autistic students. Therefore, future research should focus on the experiences of autistic university students across the three groups and how they navigate university and institutional support. Lay Abstract This study looks at how U.K. universities recognise and support autistic students. We focused on three different types of autistic students: those who enter university with a formal autism diagnosis, those currently seeking an autism diagnosis and those who consider themselves autistic but do not wish for a formal autism diagnosis. Currently, there has been little research about how universities identify these students or decide what help to offer. To gain a better understanding, we sent detailed questionnaires to every publicly funded university in the United Kingdom using Freedom of Information requests. This approach meant that publicly funded universities were legally required to provide information about their policies and practices. We received 125 valid responses out of 142 universities, an 88% response rate. Our questionnaire included multiple choice questions and areas in which universities could provide extra information if they wished. This allowed us to gather numbers and real-world examples from staff working in university disability support services. After data analysis, results showed that only half of universities kept records on students with a formal autism diagnosis. Fewer collected information about students seeking a diagnosis (16%) or who self-identify as autistic without wishing for a diagnosis (7%). Just 2% had a formal policy guiding staff on how to support students who do not have a diagnosis. In most cases, adjustments and support for undiagnosed students were left to staff judgement, and often depended on providing medical evidence, even though the law says support should be given based on need, not just diagnosis. These findings highlight large differences in how universities identify and support autistic students, especially those without a formal diagnosis. This raises important questions about fairness and consistency, and what more can be done to ensure all autistic students can access the help they need during their studies.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 23 Oct 2026 01:01.

Cited references
41
With a DOI
30
Without a DOI, from raw bibliography text
11
7 / 41 (17.1%) cited references include at least one author identified as autistic.
References with data to complete
9 / 41 (22.0%)
References with detected author names
32 / 41 (78.0%)
Without detected author names
9
Without a structured title
9
Without a stable identifier
11
References with raw author names still to review
8
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
120
From DOI or external metadata
120
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
15
73 / 120 (60.8%) names are linked to an author already present in AutiHub. 47 / 120 (39.2%) names are not yet linked.
Names linked to a person identified as autistic
8 / 120 (6.7%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 8 / 73 (11.0%). Distinct people identified as autistic: 8 / 103 (7.8%).
  1. Louise Bradley , Rebecca Shaw , S. Baron-Cohen , Sarah Cassidy (2021). Autistic Adults' Experiences of Camouflaging and Its Perceived Impact on Mental Health . Autism in Adulthood, 3(4), 320-329. SAGE Publications.
    Crossref
  2. Eilidh Cage , Zoe Troxell-Whitman (2019). Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults . Journal of Autism and Developmental Disorders, 49(5), 1899-1911. Springer Science and Business Media LLC.
    Crossref
  3. Julia Cook , Laura Hull , Laura Crane , William Mandy (2021). Camouflaging in autism: A systematic review . Clinical Psychology Review, 89(102), 102080. Elsevier BV.
    Crossref
  4. Jess Cray , Laura Hull , Felicity Sedgewick (2024). What's out there? A scoping review of autism-related policies and research interests at U.K. higher education institutions . Neurodiversity, 2. SAGE Publications.
    Crossref
  5. Mariya T. Davis , Gavin W. Watts , Eric J. López (2021). A systematic review of firsthand experiences and supports for students with autism spectrum disorder in higher education . Research in Autism Spectrum Disorders, 84(1), 101769. Elsevier BV.
    Crossref
  6. (n.d.). Equality Act 2010 c. 15. (UK). Legislation.gov.uk. https://www.legislation.gov.uk/ukpga/2010/15/contents
    Type: Other
    Crossref
  7. Marc Fabri , Grania Fenton , Penny Andrews *Autistic author. Learn more… , Mhairi Beaton (2022). Experiences of Higher Education Students on the Autism Spectrum: Stories of Low Mood and High Resilience . International Journal of Disability, Development and Education, 69(4), 1411-1429. Informa UK Limited.
    Crossref
  8. (n.d.). Freedom of Information Act 2000 c. 36. (UK). Legislation.gov.uk. https://www.legislation.gov.uk/ukpga/2000/36/contents
    Type: Other
    Crossref
  9. (n.d.). Freedom of Information (Scotland) Act 2002 asp 13. (UK). Legislation.gov.uk. https://www.legislation.gov.uk/asp/2002/13/contents
    Type: Other
    Crossref
  10. Emine Gurbuz , Mary Hanley , Deborah M. Riby (2019). University Students with Autism: The Social and Academic Experiences of University in the UK . Journal of Autism and Developmental Disorders, 49(2), 617-631. Springer Science and Business Media LLC.
    Crossref
  11. Francesca Happé , Uta Frith (2020). Annual Research Review: Looking back to look forward – changes in the concept of autism and implications for future research . Journal of Child Psychology and Psychiatry, 61(3), 218-232. Wiley.
    Crossref
  12. (n.d.). Harrison M. Hemingway L. Sheldon A. Pawson R. Barnes C. (2009 December). Evaluation of provision and support for disabled students in higher education: Report to HEFCE and HEFCW by the Centre for Disability Studies and School of Sociology and Social Policy at the University of Leeds. Higher Education Funding Council for England & Higher Education Funding Council for Wales. https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/harrison-HEFCE-report.pdf
    Type: Other
    Crossref
  13. Higher Education Statistics Agency. (2026). Who’s studying in HE?: Personal characteristics [Data set]. https://www.hesa.ac.uk/data-and-analysis/students/whos-in-he/characteristics
    Type: Other
    Crossref
  14. Laura Hull , Lily Levy , Meng-Chuan Lai , K.V. Petrides , S. Baron-Cohen , C. Allison et al. (2021). Is social camouflaging associated with anxiety and depression in autistic adults? Molecular Autism, 12(1), 1. Springer Science and Business Media LLC.
    Crossref
  15. Laura Hull , K.V. Petrides , C. Allison , P. Smith , S. Baron-Cohen , Meng-Chuan Lai et al. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions . Journal of Autism and Developmental Disorders, 47(8), 2519-2534. Springer Science and Business Media LLC.
    Crossref
  16. Lorcan Kenny , Caroline Hattersley , Bonnie Molins , Carole Buckley , Carol Povey , Elizabeth Pellicano (2016). Which terms should be used to describe autism? Perspectives from the UK autism community . Autism, 20(4), 442-462. SAGE Publications.
    Crossref
  17. Fiona Knott , Angela Taylor (2014). Life at university with Asperger syndrome: a comparison of student and staff perspectives . International Journal of Inclusive Education, 18(4), 411-426. Informa UK Limited.
    Crossref
  18. G. Koutsouris , L. Stentiford , E. Dimitrellou , Z. Yu , Pujaningsih , N. Azizah (2026). The absent presence of disability in British higher education . British Educational Research Journal, 52(1), 340-359. Wiley.
    Type: Article DOI: 10.1002/berj.70011
    Crossref
  19. Krippendorff K. (2018). Content analysis: An introduction to its methodology . Content analysis: An introduction to its methodology.
    Type: Other
    Crossref
  20. Laura Foran Lewis (2017). A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults . Journal of Autism and Developmental Disorders, 47(8), 2410-2424. Springer Science and Business Media LLC.
    Crossref
  21. Lipsky M. (2010). Street-level bureaucracy: Dilemmas of the individual in public services . Street-level bureaucracy: Dilemmas of the individual in public services.
    Type: Other
    Crossref
  22. Rebecca Lucas , Alana I. James (2018). An Evaluation of Specialist Mentoring for University Students with Autism Spectrum Disorders and Mental Health Conditions . Journal of Autism and Developmental Disorders, 48(3), 694-707. Springer Science and Business Media LLC.
    Crossref
  23. Efrem Melián , Julio Meneses (2022). Getting ahead in the online university: Disclosure experiences of students with apparent and hidden disabilities . International Journal of Educational Research, 114, 101991. Elsevier BV.
    Type: Article DOI: 10.1016/j.ijer.2022.101991
    Crossref
  24. (n.d.). Morris J. (2024 April 4). The rapidly growing waiting lists for autism and ADHD assessments. QualityWatch (Nuffield Trust & The Health Foundation). https://www.nuffieldtrust.org.uk/news-item/the-rapidly-growing-waiting-lists-for-autism-and-adhd-assessments
    Type: Other
    Crossref
  25. Alice Newton , Aidan Flinn , James Downs , Laura Richmond (2025). Rethinking self-identification in neurodivergent communities: barriers, harms, and the need for change . Frontiers in Child and Adolescent Psychiatry, 4. Frontiers Media SA.
    Type: Article DOI: 10.3389/frcha.2025.1682129
    Crossref
  26. (n.d.). NHS England. (2025 August 14). Autism statistics: July 2024 to June 2025 (Autism Waiting Time Statistics). NHS England Digital. https://digital.nhs.uk/data-and-information/publications/statistical/autism-statistics/july-2024-to-june-2025
    Type: Other
    Crossref
  27. Elizabeth O'Nions , Irene Petersen , Joshua E.J. Buckman , Rebecca A. Charlton , Claudia Cooper , Anne Corbett et al. (2023). Autism in England: Assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data . The Lancet Regional Health. Europe, 29(29), 100626. Elsevier BV.
    Crossref
  28. Gayle L. Overton , Ferran Marsà-Sambola , Rachael Martin , Penny Cavenagh (2024). Understanding the Self-identification of Autism in Adults: a Scoping Review . Review Journal of Autism and Developmental Disorders, 11(4), 682-702. Springer Science and Business Media LLC.
    Crossref
  29. Matthew Scott , Felicity Sedgewick (2021). ‘I have more control over my life’: A qualitative exploration of challenges, opportunities, and support needs among autistic university students . Autism & Developmental Language Impairments, 6, 239694152110104. SAGE Publications.
    Crossref
  30. Eunice S. Y. Tang , Austin Griffiths , Graham F. Welch (2024). The Impact of Three Key Paradigm Shifts on Disability, Inclusion, and Autism in Higher Education in England: An Integrative Review . Trends in Higher Education, 3(1), 122-141. MDPI AG.
    Crossref
  31. (n.d.). University of Bristol v Abrahart [2024] EWHC 299 (KB). https://www.judiciary.uk/wp-content/uploads/2024/02/The-University-of-Bristol-v-Dr-Robert-Abrahart.pdf
    Type: Other
    Crossref
  32. Jonathan Vincent (2026). Diagnosis and distinction: understanding autistic identity construction in university students and graduates through the tactics of intersubjectivity . Disability & Society, 41(4), 863-883. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2025.2570348
    Crossref
  33. Jonathan Vincent , Helen Rowe , Jo Johnson (2022). Parity of participation for autistic students: Mapping provision across UK higher education institutions . Research in Education, 112(1), 20-38. SAGE Publications.
    Crossref
  34. Williams M. Pollard E. Takala H. Houghton A.-M. (2019). Review of support for disabled students in higher education in England: Report to the Office for Students by the Institute for Employment Studies and Researching Equity Access and Participation. Office for Students. https://www.officeforstudents.org.uk/media/a8152716-870b-47f2-8045-fc30e8e599e5/review-of-support-for-disabled-students-in-higher-education-in-england.pdf
    Type: Other
    Crossref