For people with autism, travelling on public transport can be traumatic and stressful experience making them highly anxious. Autism is characterised by limited communication and reduced social skills, repetitive behaviour and high sensitivity to light, sound, touch and smell. People with autism enjoy routine. So late news that a train or bus is delayed or cancelled, can bring with it extreme frustration and disorientation. PhD candidate Mortaza Rezae is working with public transport providers across Australia informing them of the special needs of people with autism, so they can assist in making the transport experience of their passengers with autism as comfortable and bearable as possible. Mortaza was the Western Australian winner of Famelab in 2018.
Robyn Williams: Now meet Mortaza Rezae, this week's PhD. He won Flame Lab in Western Australia, the state competition, with a talk about autism, what it feels like, and how you help young people on the spectrum deal with public transport. Many of them just to give up and stay home.
Mortaza Rezae: So imagine losing your ability to speak. Explaining you are hungry, thirsty, or even in pain is now beyond your powers. But imagine you are also trapped in a space with loud and deafening sounds. The surrounding light is so bright that you can't keep your eyes open. The surrounding smell is so strong that it feels like an air freshener is directly being fired up your nostrils. And your comfy clothes feel like sandpaper. You feel disoriented, but relief only comes when you are completely exhausted to stay awake. This scary and unfiltered scenario is reality for people with autism spectrum. Autism is characterised by limited communication and social skills, repetitive behaviour, and high sensitivity to light, noise, touch and smell. So my description of autism, I feel like it encapsulates those core characteristics in a very brief description.
Robyn Williams: And how did you know that?
Mortaza Rezae: Well, I've had a lot of interactions with people on the spectrum, and also we've studied the literature, but I think it's important that we understand that autism is a very wide spectrum, and each and every individual is different. There is this expression that if you know one person on the spectrum, you know one person on the spectrum, and that's pretty accurate. But again, I feel like this description encapsulates the core characteristics of autism.
Robyn Williams: And how easy was it for you to go and ask those people you talked to about what it felt like?
Mortaza Rezae: Sometimes it can be difficult interacting with people because of the limited communication skills, and sometimes they just don't feel comfortable answering your questions. So you have to use different techniques in interacting with them. We know that most people on the spectrum heavily rely on family members for their transportation needs, and so we spoke with different people on the spectrum to understand their special needs when they need to travel. Also we spoke with different public transport providers. We also spoke with customer service representatives, so these are individuals who help travellers at different stations.
And one powerful story that really stood out for me was that of an autistic individual who took a specific train at a very specific time every day, and one day it happens that this train was cancelled. So travellers had to travel to a different platform to catch the train. Now, this individual stayed on the train. He didn't want to go to a different train because the train was disrupted because this was his train. Even though the train was empty…
Robyn Williams: It was one he was used to, it was the one he wanted to be on.
Mortaza Rezae: Yes. So people on the spectrum, yes, they stick to routine. So this was his train. And so when the customer service reps, when they approached him, he seemed very agitated and he couldn't communicate his problem. All of this situation could be resolved if ahead of time people could…if they understood that there is a disruption and they understood how to deal with that stressful situation. So it's descriptions like this that makes transportation a stressful experience for people on the spectrum.
Robyn Williams: I know what it's like to miss a bus because it hasn't turned up, how frustrating it can be, even if you're not on the spectrum. So if you add to that how much dependent you are on routine and how you hate to have the routine spoiled, oh my gosh. But what about the kind of noise and disruption that you have within the bus or on the train? How much is that…if you are so sensitive to sounds and sights, how difficult is that to deal with?
Mortaza Rezae: Sensory overload is a common trait of autism spectrum. And so if you understand that the trip that you're about to have involves crowded trains, rowdy passengers, if you know that there's going to be people who are disruptive, people who eat food on the train, the smell can be annoying, and if you understand these problems and you try to come up with solutions on how to deal with this sensory overload, individuals can study ahead of time before they leave for the trip, or they can have it handy in a package that they could access at any time whenever they need to to manage those situations. It can definitely help them travel more confidently and be more confident.
Robyn Williams: Well, I know that on certain trains around Australia in most states you can have quiet carriages, there are places where you can go where you are not surrounded by racket and people making phone calls and being raucous and so on. But what can you do on buses, individual buses? Would the driver or someone, an invigilator, have to say something to keep people quiet or what?
Mortaza Rezae: Well, obviously you can't tell people what to do, especially in peak hours, public transport can get really crowded. But what you can do is understanding how to deal with those emotions, how to manage those anxieties, how to manage that sensory overload. And that's one of the problems that we try to address in our research.
Robyn Williams: And of course that would be good for everybody because it will make travelling much easier. So how have you got on in making these recommendations? What sort of response have you had from people actually on…public transport authorities and so on?
Mortaza Rezae: So we have actually had a lot of support from the New South Wales government, from the Department of Transport, from the Department of Innovation. So at the moment we are working with them to test the app with a very large group in New South Wales, and also we are testing the app independently in Western Australia, just to get some feedback on the app and it may improve it and help to make public transport easier and much more manageable.
Robyn Williams: PhD student at Curtin University in Perth, and Fame Lab finalist Mortaza Rezae, making public transport safe for those on the spectrum.