Vision in Autism: A Lived Experience Approach
Tuesday April 21, 2026
Background and Purpose
Approximately 1–2% of the world’s population is Autistic. Many Autistic individuals experience visual challenges, such as light sensitivity or visual overwhelm, which can significantly impact quality of life and the ability to participate in occupational and social settings. Research suggests that structural differences in the retina may place Autistic individuals at a heightened risk of retinal disease and vision loss. Yet, because of a lack of research, we still do not fully understand how retinal development differs in autism. Our aim is to investigate these differences at the genetic and cellular levels to provide fundamental biological insight that can inform more inclusive environments, support better quality of life, and improve understanding of how vision may vary across the autistic population.
Previous studies into the molecular basis of Autism have included limited involvement of Autistic people themselves. This has meant that research priorities do not always align with the needs of the Autistic community. Our research aims to embed lived experience throughout the project lifespan. By working with Autistic people and partnering with two local Autistic charities, we have undertaken participatory research that is driven and shaped by real-world concerns and the priorities of Autistic people themselves.
Outcomes (Achieved or Projected)
As part of this project, we successfully established a multidisciplinary working group bringing together representatives from local autism charities, The Toby Henderson Trust and Your Voice Counts, alongside collaborators from Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Northumbria University, and Newcastle University.
- This group brings together complementary expertise across molecular biology, psychology, lived experience, and community support for autistic people.
- This expertise allowed us to recruit a dedicated Public Advisory Group (PAG) comprising six autistic adults spanning a wide age range. This group met to co-design the study materials, including collaboratively developing a survey aimed at better understanding visual differences in autism.
- Once finalised, the survey was disseminated through the partner charities’ networks, online autism community groups, and academic channels at Newcastle University, Northumbria University, and Durham University, ensuring broad regional reach and diverse participation.
We are currently analysing the survey data collaboratively with the PAG, and the results will be shared in ways that are accessible to both the public and the scientific community. This approach reflects our commitment to transparency and equitable dissemination. It will ensure autistic people can engage with, understand, and benefit from the findings.
Who will benefit and how
Through this project, our research group has gained valuable insight into visual differences associated with autism. These early findings are already helping us refine a research question that reflects autistic priorities and lived experience, ensuring scientific work is grounded in what matters most to the community.
In the longer term, by identifying genetic and cellular differences in retinal development associated with autism, we hope Autistic people will benefit directly from this research. The project aims to provide biological insight into commonly reported sensory experiences, including light sensitivity, visual overload, and difficulties filtering visual information as well as a better understanding of ophthalmic issues which co-occur with Autism.
A clearer understanding of these mechanisms has the potential to validate lived experience, inform reasonable environmental adjustments across education, healthcare and workplaces, and support more personalised approaches to eye care and sensory support. We hope this this knowledge could support earlier monitoring, enhance understanding of the diversity of visual experiences in autism, and contribute to more informed, individualised clinical care. Importantly, our co-productive approach strengthens these outcomes by ensuring that the language, framing, and mediums of communication we use are shaped by autistic contributors themselves. This will support the findings being shared in ways that are accessible, respectful, and genuinely useful to autistic communities.
How NHRP contributed to the outcomes
Support from the Newcastle Health Research Partnership (NHRP) was essential in enabling meaningful and equitable involvement throughout this project. NHRP provided dedicated funding that ensured our partner charities and autistic contributors were fairly compensated for their time, expertise, and lived experience.
This investment allowed us to embed genuine co-production from the outset, forming a public advisory group, holding collaborative design sessions, and supporting community partners to participate fully in delivering and shaping the research direction. Without this funding, the depth and quality of involvement central to the project’s success would not have been possible.
Reflections and Learnings
Engaging directly with autistic adults and community partners provided insights that would not have been accessible through the academic literature alone. Through conversations and co-design sessions, we gained a much clearer understanding of the day-to-day visual challenges autistic people experience, how these impact wellbeing, and what research questions matter most to them.
We co-designed the survey with our Public Advisory Group. Together, we ensured that the language was clear, accessible and respectful. We iteratively refined the questions to make sure they focused on the aspects of visual experience that matter to the people who experience them without being ambiguous or overwhelming. This partnership approach strengthened the quality of the survey resulting in high response rates with rich and high quality data.
A key learning from this project has been the value of working closely with autistic contributors. It has highlighted the importance of communication that is unambiguous, sensory-considerate, and paced appropriately. It also reinforced the importance of fair compensation and creating an inclusive, supportive environment where lived experience is recognised as an expertise of equal importance to academic and clinical knowledge.
Further Information
Case study by Dr Rachel Queen Rachel.Queen@newcastle.ac.uk