Travelling with Lothian with autism
“I just wish people would understand I’m trying to get from A to B as comfortably as possible”
As a regular bus user before the pandemic, Sarah was on our services two or three times a week. Regardless of how frequently she travelled by bus, however, each experience was often very challenging due to sensory overload associated with autism.
Sarah received a very late diagnosis of autism at the age of 27. At this point she was married and pregnant with her second child. Both of her children are autistic too and additionally, Sarah suffers from complex Post Traumatic Stress Disorder (PTSD). Her main challenges are sensitivity to sound and light.
We asked Sarah to describe what a typical bus journey feels like for her. She notes that while her assistance dog, Millie, waits with her at the bus stop, she’s painfully aware of all sounds around her.
“Other people at the bus stop talking is a massive issue for me,” Sarah admits. “I can hear people listening to music through their headphones, traffic rushing past on the roads. Even the weather can make it extremely challenging for me to feel at ease.”
“Due to this, I always try and get on the bus first, so I can get away from all the sounds but also sit in a seat with space for me and Millie.”
Sarah hopes that the presence of Millie means that other customers are aware she has a hidden disability, and allow her the space she needs to feel comfortable getting on the bus. Entering a bus can be extremely challenging for her if there is a crowd at the bus stop.
Unfortunately for Sarah, busy buses can be a painful experience. In an ideal scenario, no one would sit next to her because it overwhelms her. On a busy service, people often sit next to her because there’s no other space available.
“I also like to sit on the same spot on every journey,” says Sarah. “Routine is really important for me and Millie. When seated, I get Millie to anchor herself so that I can stroke her and keep eye contact. This makes me less aware of everyone else on the bus and lets me focus on just her. I feel less overwhelmed by doing this.”
Sadly though, it can be challenging to maintain this focus throughout the journey. Sarah is unable to filter out other sounds on the bus, such as other customers talking or moving to and from their seats.
She gets distracted by even the most innocuous of sounds, meaning her companion Millie is extremely vital to her. Sarah concedes she wouldn’t be able to go anywhere without her assistance dog, and that their relationship his crucial to her everyday life now.
“She even notices when I’m becoming aggravated on buses and uses her body to put pressure on my lap. She’ll paw at me and regain my attention, helping me focus on her again.”
Sarah’s vision can often blur if the bus is particularly busy and she is at risk of completely disassociating from her environment. If this happens, Sarah will simply forget she is on a bus and can miss her stop. She has told us she has experienced ‘’overwhelming symptoms’ and ‘dissociative brain crash’ while travelling. This can be magnified if she is confronted about her behaviour, as to the average passenger she appears young, fit and otherwise healthy. The customer or driver may not know of her condition, so they can be unaware that their presence is causing Sarah a lot of discomfort.
“I cannot describe the massive sense of relief when getting off the bus in those situations,” Sarah states. “Saying that, buses are vital to me as I don’t drive and won’t be able to sit my test until after lockdown.”
“Drivers have always been friendly and understanding to me, especially since I started taking Millie on the bus. On most occasions, Millie has been a good indication to others that I may have a hidden disability or have additional needs.”
However, Sarah has encountered trouble with other customers while on buses, and is anxious about using a bus post-lockdown because of the potential judgement she’ll face as she is unable to wear a face covering.
Even before the pandemic, Sarah found difficulty on buses due to customers asking her why she’s sitting in priority seats, or asking her about what they believe is ‘abnormal behaviour.’ For Sarah, this behaviour is simply her doing what she can to cope while she’s making her journey.
“I just wish people would understand I’m just trying to get from A to B as comfortably as possible.
“I’ve had to use wheelchair buggies with my children, and many people don’t recognise the difference between these and normal buggies.
“Even though I have a sign on mine, people have given me comments and stares on buses if one or both of my children have a meltdown on a bus.”
Sarah bemoans the lack of understanding during these situations, and says that people don’t seem to think that her children could possibly have a disability to explain their behaviour. She hates the thought that her children are being seen as just throwing a ‘tantrum’. She is certain that fellow customers do not consider that she herself also has a disability during these situations.
Although it may seem trivial, other customers interacting with her assistance dog also causes Sarah a lot of difficulty. “I’ve had to retrain Millie to ignore distractions because it happens so often she believes these distractions are ok. I know people just want to say hello to her but they don’t realise she’s on the bus because I rely on her desperately and I need her to be focussed on me at all times.”
Sarah fully supports Lothian’s plans to raise awareness of hidden disabilities and the need for more understanding on buses.
“Absolutely, it would change a lot of things for the better,” she says. “It would allow us the space and time we require without the need to have a conversation or confrontation with staff or other customers.
“It would be a massive help to me, my children and others like us. That confidence is something I haven’t felt when using the buses in a long time.”
Our thanks go to Sarah for speaking about her experiences with us.
Lothian remains committed to providing an efficient, world class bus service for the people of Edinburgh and the Lothians. Within that commitment, we reiterate that our buses are accessible for everyone. We would like to remind customers that not all disabilities are visible, and for a variety of reasons some of our customers cannot wear a face mask during their essential journey. Please be kind and considerate while on our buses.
To learn more about Hidden Disabilities and the Hidden Disabilities Sunflower, visit the Hidden Disabilities website.