Anders, 25, is heavily reliant on transport to attend postgraduate studies at university as well as part-time work. He also has regular healthcare appointments which need a tube or bus ride to get to. Using transport can be difficult, both in his former home of rural East Midlands, and London where he now lives. Anders avoids public transport where he can, walking and cycling to get around even when it’s physically exhausting, because of how distressing travel can be: 
 

"The sensory input of buses, tubes, and trains are my absolute nightmare. When temperature is not well-controlled, I become claustrophobic and panicked, making my self-regulation techniques difficult to implement.

 

People around me being inconsiderate or unaware of their surroundings often set me into overstimulation, especially when there are people blasting music/videos on their phones, talking loudly on the phone, or being rowdy on public transit. In certain situations, I can move to a quieter place, such as when I am on the tube, but if I am on a train with assigned seating or a bus with limited space, there really isn’t anything I can do.

 

I struggle a lot with the lack of hygiene in public places as well. People often litter a lot, even with proper waste receptacles available, and the infrequent sanitisation of public transit makes me feel sticky. It is an unpleasant sensory experience and places a heavy mental load on me."

It’s common for autistic people like Anders to feel exhausted and overwhelmed by the combination of unpleasant sensations on a journey. Other passengers can often make a bad situation worse by making a lot of unnecessary noise, and littering. Like Anders, many of the autistic people we surveyed also told us that uncleanliness is a particular aspect of the sensory environment are affected by. He also struggles with lack of control while travelling, especially on buses with unpredictable road traffic and sudden crowds. 

Anders also notes that the sheer volume of visitors to the capital means that there are a lot of different social expectations about how one acts on public transport, which can be stressful to contend with:
 

"Usually it’s people talking loudly on the phone, or not being aware of their surroundings. In some places it can be seen as completely acceptable to be loud and talking on the phone or to others on the train, whereas in London it’s seen as rude and inconsiderate to others so people prefer to talk quietly. 

 

Other varying expectations about how one conducts themselves in public include being particularly rowdy on transport and not abiding to the rules of staying to the right of the escalator."

All of these difficulties take a heavy toll on autistic passengers, to the point where they may be unable to finish their journey, and need a lot of time to recover. Worse still, people like Anders can become reluctant to use public transport, limiting what services and experiences they can access. Anders recalls an incident where a fellow passenger showed contempt for his needs:
 

"I have a distinct memory of being on a very busy bus traveling to my GP. While most people were being respectful and minding their space and volume level, there was a guy sitting in front of me blasting music on his phone. Several times I had asked him to turn it off, as I could hear it through the combination of ear defenders and earplugs I wear while I travel. He completely ignored me, which made me frustrated. The excess sound of repetitive music, especially when it has heavy bass, hurts my ears as it pings off my eardrums. The sensation physically pains me and causes intense headaches and an inability to focus on anything other than the sensation, as I struggle to tune it out.

 

I was nearly in tears begging him to stop, to which he blankly stared at me and told me to grow up. Nobody around me intervened, ignoring the situation. I wound up getting off several stops early and walking half an hour to my appointment instead, turning what should have been a 10-minute journey into nearly 45 minutes. I arrived at my appointment exhausted and unable to voice my needs properly." 

Through our research we heard so many stories of autistic people being judged and belittled when asking for basic consideration, advocating for their needs on transport and even just existing in public spaces. Many have similar experiences to Anders, where they gain the confidence to tell staff what they need to travel safely and comfortably, only to be ignored:
 

"When I am trying to voice my needs during travel situations, I am often not taken as seriously as I should be, if I am listened to at all. I clearly state that I am autistic and am struggling, but due to previously held biases or conceptions about what an autistic person looks like coupled with a general lack of knowledge, staff are often less empathetic to me in comparison to those with visible disabilities. I am infantilised for my requests and spoken to as if I am an eight-year-old child."

Anders is hopeful that with greater understanding and knowledge of autism and hidden disabilities, people will be more tolerant and able to support people like him. The Sunflower Lanyard can be a useful tool to silently signal a hidden disability, prompting staff to recognise that you may have additional needs while travelling. After a cancelled service, stressful wait at a crowded station and running out of battery on his phone, Anders boarded a coach with a driver who showed him respect and understanding:
 

"I boarded the coach with my sunflower lanyard on and almost immediately the driver asked if there was anything that I needed from him assistance wise. I immediately felt at ease knowing that even though the evening had not gone as planned, that I had someone on my side looking out for me. When my USB-port didn’t work to charge my phone, he even plugged my phone in on his dashboard, allowing me enough charge to call my mum to keep her updated throughout the process. Coach drivers, if needed, have also called out passengers for being disrespectful to other riders and have intervened appropriately to avoid escalation.

 

Being able to have someone recognise the sunflower lanyard is incredibly important, and offering help is one of the best things people can do. It doesn’t matter how many times I say that I do not need help, if I am wearing my lanyard, I appreciate it because it means that people are aware that I may need assistance. Having an understanding of autism and how it can vary from person to person is essential to providing accessible travel."

He also notes how much more autism friendly coach travel can be, enabling him to save ‘spoons’ and energy for his destination. He often finds coaches clean, with adjustable aircon and lone seating. They also make fewer stops, making the ride more comfortable.