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

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

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Edwards, C., Love, A., Cai, R. Y., Constable, P. A., Love, D. C., Parmar, K. R., 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
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Authors

Publication authors
8
Publication authors identified as autistic
1 / 8 (12.5%)
  1. Chris Edwards *
  2. Abigail Love
  3. Ru Ying Cai
  4. Paul A. Constable
  1. Daniel C. Love
  2. Ketan R. Parmar
  3. Emma Gowen
  4. vicki gibbs

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.

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: 2 Oct 2026 11:54.

Cited references
38
With a DOI
35
Without a DOI, from raw bibliography text
3
12 / 38 (31.6%) cited references include at least one author identified as autistic.
References with data to complete
2 / 38 (5.3%)
References with detected author names
36 / 38 (94.7%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
3
References with raw author names still to review
2
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
168
From DOI or external metadata
168
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
2
84 / 168 (50.0%) names are linked to an author already present in AutiHub. 84 / 168 (50.0%) names are not yet linked.
Names linked to a person identified as autistic
22 / 168 (13.1%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 22 / 84 (26.2%). Distinct people identified as autistic: 18 / 151 (11.9%).
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