Maya’s story: "My entire evening was thrown out of routine"
Maya, 30, lives in a semi-urban town in South East England. Though she finds public transport extremely challenging, Maya travels because she has to, and ‘the alternative is not going anywhere’. Her difficult bus journeys deter her from travelling into the city any more than she has to:
"I could drive, but it is impractical and would require using a Park and Ride. I rarely go into the city beyond going to work these days, as getting the bus requires a lot of psyching up. I only do it if I have specific events I need to attend in the city. I try to do as much as I can on my lunch break, to avoid having to come into City Centre on my weekends and get extra buses."
Maya finds her bus commute extremely draining. While her employer is understanding when her bus is late, it causes Maya a lot of anxiety and stress, taking her significantly longer to settle into the office day:
"Being on the bus can push me from being just about okay with the world to extremely overwhelmed very quickly. I am high masking, which means office days are already tiring. The fact that I have to spend over an hour on the bus each way in order to be in the office can make the difference between whether I go to the office or work from home when I am having a bad day. I’m lucky in my flexibility, but it disrupts my routine when I have to WFH on a day I would expect to be in the office. If I wake up on a morning struggling with noise, I have to decide whether to go in, and I have to take into account whether I will be able to cope with the return journey after a day in the office. "
On a ‘good’ day, and on the morning commute which is often quieter, Maya manages the journey by using noise cancelling headphones. She often knits or listens to an audiobook to bring comfort and help regulate. Journeys are also easier when she can sit alone, and she arrives at the destination on time (or even just a little late). When the bus is more busy, she often tries to ‘zone out’ as it can be very overstimulating:
"When it’s busier the bus gets really hot and I have to sit next to someone which makes me tense at having to brush up against a stranger often. I don’t like being hot either, as it makes me nauseous, but sometimes the bus feels so crowded that it feels impossible to take my coat or jumper off, and I have to try not to feel nauseous or look/act overwhelmed. "
Like many of the autistic people we surveyed, Maya also finds social interactions particularly difficult while travelling. At the end of a tiring working day, conversing with other passengers prevents her from resting, unmasking, and accessing the tools that help her to regulate:
"The aspect I dislike most is talking to people on the bus as it extends the need to mask. There was a day where I’d had a long and particularly people-heavy day in the office fixing lots of issues. By the time I got to the bus, I was exhausted and just wanted my routine of noise-cancelling headphones and an audiobook to get me home. I was looking forward to starting my evening of not having to talk to anyone when a fellow regular struck up a conversation with me. I was my usual masked self and chatted until the bus arrived, thinking that I’d get to have some peace once I was on the bus. However, when the bus arrived it was fuller than usual, and I ended up sat next to a different regular and she wanted to chat the whole hour home. When we reached our stop and all of us got off, the first guy picked up the conversation again and, as he lived near me, maintained conversation the whole way home.
By the time I reached my home I was utterly exhausted and close to tears from how little I had been able to follow my usual peace-building routine. I hadn’t felt like I was able to interrupt them or stop the conversation at any point to put my headphones in, and didn’t want to make things awkward for future bus trips. My entire evening was thrown out of routine by this loss of an hour and I struggled very much with basic things the rest of the night. I have taken to putting my headphones in before getting to the bus stop and keeping my eyes down when I really haven’t the spoons for conversation. It feels a little less awkward to be straight up ignoring them then."
Maya often drives if she’s travelling further afield, as travelling to new places gives her extreme anxiety, and transport services are limited in her area. Occasionally she uses a train or coach to get to London. She finds trains easier to use than buses and is frustrated that there are no trains between her town and nearest city. Leisure journeys to London are often more relaxed as she has flexibility to select quieter travel times to get seating alone, quiet carriages are available, and there are clear visual and audio indicators of upcoming stops so she knows where she is. Maya also finds it helpful that staff at the stations she uses are clearly identifiable by hi-vis vests.
Despite the more predictable and spacious environments of trains, these journeys can cause stress if Maya has to change trains and things don’t go to plan:
"I do not worry quite so much on trains unless I have to change and there is a delay. That’s terrifying – not knowing whether I will make my second train despite pre-planning. I try to mitigate it by having back up plans but it’s still exhausting."
Some of the changes which would make travel more accessible for Maya include:
- Improved ventilation and air conditioning to prevent overheating and reduce bad smells
- On-board announcements for all upcoming stops on buses
- Increased awareness that not everyone is confident in their journey and they may need a little extra grace and patience
- Considering wider seat size in future bus design, to avoid passengers having to touch
This case study is part of a series from our recent research project: Empowering Autistic Travel. The project was led by autistic people and collected data from thousands of autistic people, as well as their families and supporters, gathering insight about the many challenges faced when using public transport in the UK. Here, we share some of their stories, which highlight personal challenges, the impact they have and the strategies that would help. You can read other case studies from this series and explore the full research findings in our research report.