Co-design and collaboration
In 2024-25, the National Autistic Society’s Evidence and Research team carried out a project, generously funded by the Motability Foundation, exploring barriers and solutions to travel for autistic people. In this article, we credit our co-design group and transport consultants who supported the research, and share some of their thoughts and experiences.
Our co-design group
We worked with a group of eight autistic community members who guided the research process. They were selected from a large pool of people who expressed interest from across the UK. Our thorough and thought-provoking discussions have been invaluable to the accessibility, quality and accuracy of the research, and we are grateful for their contribution:
Alex Kegie
Alison Nicholls
Ally Pax Arcari Mair
Anders O’Donnell
Ben Howe
Eiman Munro
Gaia Gilmore
Sam Anderton
The group were diverse in terms of geographical location, gender, ethnicity, experience and use of transport, and support needs. Through collaboration with the co-design group, we were able to ensure that:
- Autistic voices and experiences were at the forefront of our research, and meaningfully involved in running the project - a participatory approach
- There was consensus about the most significant forms of travel to focus the research on (train, bus and taxi travel)
- Research materials such as surveys and participant information were clear and accessible for an autistic audience
- Research processes were verified by autistic people at each stage, e.g. developing materials, sharing research opportunities and interpreting findings
- We considered new angles and perspectives when interpreting data to develop insights
- Our own researcher biases were challenged, and approach adapted accordingly
Some of our co-design group discuss the experience
“I definitely feel I’ve had the space to speak up. I like those silent spaces to let us come in as well, for when I’m not sure if I should say it. It feels like, even if it’s contrary to what’s been said, I’m not judged – which is unusual in day-to-day life.”
“Collaboration worked well and everyone in the group got to contribute. I felt that my opinions were respected, particularly around my intersectional experiences.”
“I enjoy the fact that we’ve been able to provide such meaningful feedback that’s gone into publication so quickly. Usually with focus groups they tend to have periods of silence and it can feel as if you haven’t really contributed much. The timelines and consistent updates have been fabulous and should be continued in future groups.”
“It was really awesome to see when you came back [from writing the report], the stuff that we’d said was all there. It was brilliant to see it there on a bit of paper. There was a trust there, that if I said something it was actually going to be listened to and taken forward.”
Transport consultants
We were fortunate enough to have the support of some transport professionals who acted as project consultants. Adam Sergent and Jon Ridge, who work for Network Rail, kindly gave their time to review research materials and advise on recruitment of other professionals for our focus groups. Adam also runs the Neurodiversity Centre of Excellence, a forum which brings together experts in the rail industry who are keen to discuss issues affecting neurodivergent passengers, and drive change in the industry.
It was important for this project that we involved professionals who have knowledge of current initiatives and shortfalls with accessible transport. We are grateful to Adam and Jon for sharing their insight and support.
Here, Adam shares his thoughts on the project, and the wider landscape of accessible transport:
What is your connection to autism, and transport?
Ever since I was very young, I have always had a personal interest in transport, especially trains, buses and aircraft.
What in your view are the key issues/barriers in rail, or wider transport for autistic people?
- A combination of stigma, the need to get more people onboard leading to more crowds and overstimulation (especially with airlines overbooking seats).
- Lack of single or tip-up seating in quieter areas, especially on long distance trains.
- Passengers dismissing your needs when you’re in a priority seat.
- Ticketing which doesn’t permit a break of journey for when a bus suddenly gets too crowded.
- Misleading information which can cause confusion or at worse, being stranded.
- Cheaper ‘super/secret’ fares only giving 24 hours notice of which train you can use.
- Not being eligible for the disabled persons bus pass (for breaks of journey)
- Unsupportive attitudes from local authorities.
What are some positive initiatives you have been involved in, or are aware of?
- First Bus and many train operators having live passenger occupancy
- Some Go Ahead companies having ‘Hopper Fares’ in which allows a break of journey within an hour of your first journey.
- Altro (a flooring company) recently did a Neuroinclusion conference for the bus industry which was very good.
- Cross industry working groups within rail.
What interested you in the EAT project, and what impact do you hope it will have?
- To be able to support positive change.
- More awareness for those working in councils, on the frontline and those who work within legislation.
What are your hopes for the future of autistic travel?
- To be eligible for the disabled bus pass (whatever your level of support needs)
- Better training and awareness
- Clearer marketing and information
Read our project report for full detail of the changes which could help improve transport accessibility for autistic people.