Understanding eye care access for autistic adults and families: A convergent mixed-methods study

Edwards, C., Love, A. M., Cai, R. Y., Constable, P. A., Love, D. C., Parmar, K., Gowen, E., & Gibbs, V. (2025). Understanding eye care access for autistic adults and families: A convergent mixed-methods study. Autism, 30(1), 122-133. https://doi.org/10.1177/13623613251371509

Publication date: 20 Sep 2025 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
8
Publication authors identified as autistic
1 / 8 (12.5%)

Abstract

Autistic people face persistent barriers to accessing healthcare, yet little is known about their experiences receiving eye care, despite elevated rates of vision conditions. This convergent mixed-methods study explored the eye care experiences of 127 autistic adults and 69 parents of autistic children living in Australia and Aotearoa New Zealand. Through an online survey incorporating both structured and open-ended items, we examined access patterns, perceived barriers and enablers, and unmet needs. Quantitative data revealed widespread challenges, including sensory discomfort, communication difficulties, and financial costs, while qualitative responses foregrounded how provider interaction, clinical pacing, and environmental conditions shaped overall experience. Although participants valued clearer communication and sensory-informed adjustments, these were described as insufficient in the face of structural barriers such as affordability and inaccessible service locations. These findings align with emerging models of autism-informed healthcare that advocate for systemic, rather than ad hoc, approaches to accessibility. Our results underscore the need for proactive, cross-sector solutions developed in partnership with autistic people, which embed neurodiversity-affirming principles into eye care design, delivery, and policy. Addressing these inequities is both an ethical and practical imperative if we are to ensure that eye care services are inclusive, sustainable, and responsive to diverse ways of being.Lay abstractAutistic people often face barriers when using healthcare services, but little is known about their experiences with eye care. This is important because autistic people are more likely to have vision problems like needing glasses, having a lazy eye, or having trouble with how their eyes work together. In this study, we asked 127 autistic adults and 69 parents of autistic children in Australia and Aotearoa New Zealand about their experiences receiving eye care. People completed an online survey that included multiple-choice questions and space to describe their experiences in their own words. Many participants said that eye care could be stressful or confusing. Common challenges included unclear instructions, bright lights, noisy environments, feeling rushed, and staff not understanding autism. Some people avoided going to eye care professionals altogether because they could not afford glasses or found the environment too overwhelming. Participants said that small changes like using plain language, giving more time, and creating a calm environment helped make care more accessible. However, these small changes were not always enough, especially when services were too expensive or hard to get to. To improve access to eye care, changes need to happen at all levels, including how clinics are designed and how staff are trained. These changes should be made together with autistic people to make sure that services meet their needs and feel respectful and welcoming. This study shows the need to redesign eye care so that it works better for autistic people and their families.

Bibliography cited by this reference

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

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
38
Total cited references integrated for this publication.
Cited references with an identified autistic author
9 / 38 (23.7%)
Cited author occurrences identified as autistic
17 / 168 (10.1%)
Among occurrences linked to AutiHub author records: 17 / 76 (22.4%). Distinct cited authors identified as autistic: 13 / 151 (8.6%).
Cited author occurrences linked to AutiHub author records
76 / 168 (45.2%)
Distinct linked cited authors: 60 / 151 (39.7%)
Linked cited-author occurrences not identified as autistic
59 / 76 (77.6%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 59 / 168 (35.1%). Distinct linked cited authors not identified as autistic: 47 / 60 (78.3%).
  1. Priscilla Robinson (2007). Designing and Conducting Mixed Methods Research . Australian and New Zealand Journal of Public Health, 31(4), 388. Elsevier BV.
    OpenAlex
  2. Katherine Ardeleanu , Hillary Steinberg , Tamara Garfield , Samuelle Voltaire , Lindsay Shea , M. Brown et al. (2025). Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion . Autism, 29(9), 2344-2355. SAGE Publications.
    Crossref OpenAlex OpenCitations
  3. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  4. Australian Bureau of Statistics. (2024). Autism in Australia 2022. https://www.abs.gov.au/articles/autism-australia-2022
    Type: Other
    Crossref
  5. Chloe Walsh , Sinéad Lydon , Emily O’Dowd , Paul O’Connor (2020). Barriers to Healthcare for Persons with Autism: A Systematic Review of the Literature and Development of A Taxonomy . Developmental Neurorehabilitation, 23(7), 413-430. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  6. Rachel Anastasia Coulter , Annette Bade , Yin Tea , Gregory Fecho , Deborah Amster , Erin Jenewein et al. (2015). Eye Examination Testability in Children with Autism and in Typical Peers . Optometry and Vision Science, 92(1), 31-43. Wiley.
    Crossref OpenAlex OpenCitations
  7. Tonia Babalola , Giulia Sanguedolce , Lucy Dipper , Nicola Botting (2025). Barriers and Facilitators of Healthcare Access for Autistic Children in the UK: a Systematic Review . Review Journal of Autism and Developmental Disorders, 12(4), 780-808. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  8. John Perna , Alessio Bellato , Preethi S. Ganapathy , Marco Solmi , Andrea Zampieri , Stephen V. Faraone et al. (2023). Association between Autism Spectrum Disorder (ASD) and vision problems. A systematic review and meta-analysis . Molecular Psychiatry, 28(12), 5011-5023. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  9. Shenae Calleja , Fakir M. Amirul Islam , Jonathan Kingsley , Rachael McDonald (2020). Healthcare access for autistic adults . Medicine, 99(29), e20899. Ovid Technologies (Wolters Kluwer Health).
    Crossref OpenAlex OpenCitations
  10. Julie‐anne Little (2018). Vision in children with autism spectrum disorder: a critical review . Clinical and Experimental Optometry, 101(4), 504-513. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  11. Virginia Braun , Victoria Clarke , Nikki Hayfield , Gareth Terry (2019). Thematic Analysis . In Handbook of research methods in health social sciences (pp. 843-860). Springer Singapore.
    Crossref OpenAlex OpenCitations
  12. Ketan Parmar , Catherine S. Porter , Christine M. Dickinson , Peter Baimbridge , James Pelham , Emma Gowen (2022). Autism‐friendly eyecare: Developing recommendations for service providers based on the experiences of autistic adults . Ophthalmic and Physiological Optics, 42(4), 675-693. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  13. Ginny Russell , Will Mandy , Daisy Elliott , Rhianna White , Tom Pittwood , Tamsin Ford (2019). Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis . Molecular Autism, 10(1), 9. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  14. Ru Ying Cai , Emma Gallagher , Kaaren Haas , Abigail M.A. Love , Vicki Gibbs (2023). Exploring the income, savings and debt levels of autistic adults living in Australia . Advances in Autism, 9(1), 53-64. Emerald.
    Crossref OpenAlex OpenCitations
  15. Olivia J Lindly , James Chan , Rachel M Fenning , Justin G Farmer , Ann M Neumeyer , Paul Wang et al. (2021). Vision care among school-aged children with autism spectrum disorder in North America: Findings from the Autism Treatment Network Registry Call-Back Study . Autism, 25(3), 840-853. SAGE Publications.
    Crossref OpenAlex OpenCitations
  16. Jade Davies , Anna Melissa Romualdez , Elizabeth Pellicano , Anna Remington (2024). Career progression for autistic people: A scoping review . Autism, 28(11), 2690-2706. SAGE Publications.
    Crossref OpenAlex OpenCitations
  17. Kirsten Corden , Rebecca Brewer , Eilidh Cage (2022). A Systematic Review of Healthcare Professionals’ Knowledge, Self-Efficacy and Attitudes Towards Working with Autistic People . Review Journal of Autism and Developmental Disorders, 9(3), 386-399. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  18. Mark W. Swanson , Sarah Dille Lee , Marcela G. Frazier , Annette Bade , Rachel Anastacia Coulter (2020). Vision Screening among Children with Autism Spectrum Disorder . Optometry and Vision Science, 97(11), 917-928. Wiley.
    Crossref OpenAlex OpenCitations
  19. Madeleine Harvery , Elspeth H. Froude , Kitty‐Rose Foley , Julian N Trollor , Samuel R. C. Arnold (2021). Employment profiles of autistic adults in Australia . Autism Research, 14(10), 2061-2077. Wiley.
    Type: Article DOI: 10.1002/aur.2588 OpenAlex: https://openalex.org/W3190182237
    Crossref OpenAlex OpenCitations
  20. Creswell J. W. (2018). Designing and conducting mixed methods research . Designing and conducting mixed methods research.
    Type: Other
    Crossref
  21. David Mason , Gavin R. Stewart , Simone Josephine Capp , Francesca Happé (2022). Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go . Autism in Adulthood, 4(2), 164-172. SAGE Publications.
    Crossref OpenAlex OpenCitations
  22. Zain Ali Nadeem , Umar Akram , Talha Bin Khalid , Muhammad Asfandyar Nadir , Muhammad Hasnat Akhtar (2024). Refractive Errors Linked to Autism Spectrum Disorders in the Pediatric Population and Young Adults: A Systematic Review and Meta-Analysis . Review Journal of Autism and Developmental Disorders. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  23. Elizabeth M Weir , Carrie Allison , Simon Baron-Cohen (2022). Autistic adults have poorer quality healthcare and worse health based on self-report data . Molecular Autism, 13(1), 23-23. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  24. Samar Z Hamdan , Amanda Bennett (2024). Autism-Friendly Healthcare: A Narrative Review of the Literature . Cureus, 16(7), e64108-e64108. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  25. Margaret Reynolds , Susan M. Culican (2023). Visual Autism . Children, 10(4), 606. MDPI AG.
    Crossref OpenAlex OpenCitations
  26. Jonathan Vincent , Kevin Ralston (2024). Uncovering employment outcomes for autistic university graduates in the United Kingdom: An analysis of population data . Autism, 28(3), 732-743. SAGE Publications.
    Crossref OpenAlex OpenCitations
  27. Chi‐Shin Wu , Tzu‐Hsun Tsai , Wei‐Li Chen , Hui‐Ju Tsai , Yi‐Ling Chien (2023). Ophthalmologic diagnoses in youths with autism spectrum disorder: Prevalence and clinical correlates . Autism Research, 16(10), 2008-2020. Wiley.
    Type: Article DOI: 10.1002/aur.3019 OpenAlex: https://openalex.org/W4386189870
    Crossref OpenAlex OpenCitations
  28. University of Manchester. (n.d.). Autism vision and eyecare. https://sites.manchester.ac.uk/autism-and-vision/
    Type: Other
    Crossref