POV: What it’s like to go home on public transport for an autistic person and a carer – Mothership.SG

Follow us on Telegram for the latest updates: https://t.me/mothershipsg

PERSPECTIVE: “Sitting in a crowd makes me feel anxious. I need to make sounds and shake my body to regulate myself. However, this sometimes attracts hostile looks from strangers and even scolding from them. I know they don’t like me. But what should I do? I just want to go home.

This is the perspective of 20-year-old Cheryl, a person with autism, when she boards public transport alone.

Public transport is just as stressful and nerve-wracking for Esther, 46, mother and carer of Sean, also autistic.

Doubts easily enter Esther’s restless mind: “I don’t know what might happen next. What can cause my child? What can the public challenge? […] How could Sean ask for help at MRT stations or bus terminals when he gets lost and forgets how to get to his destination?”

While riding the bus or the MRT is second nature to many of us, these are just some of the many challenges that caregivers and people with autism face on a daily basis when accessing public transport in Singapore.

In the following photo essay by Calvin Eng of The Birthday Fellowship, we dive into the inner worlds of Sean, 14, and his mother, Esther, 46, as well as Cheryl, 20, and her caregiver, May 27, on a typical day in the public service system. transport of singapore.

Eng, a certified music therapist who works with people on the autism spectrum, believes that every individual, regardless of disability, may face personal challenges that we may not understand.

“Some may talk to themselves or make voices that make others feel uncomfortable and invite stares, or they may be hypersensitive to light, noise and crowds, which can lead to a meltdown. Sometimes all it takes for us as citizens is to be more aware and help when needed.”

Eng hopes that the perspective of these families — captured in his photo essay — will offer a better insight into their lives and create a public understanding of the role we all play in making public transport an inclusive space for all.

Eng credits the 23 caregivers and people with disabilities interviewed for the essay, including Cheryl, Sean, Esther and May, for being open to sharing their joys and challenges while using Singapore’s public transport.

As told by Calvin Eng and photographed by Larry To

With the escalator, the journey begins…

Cheryl:

“Travelling down the escalator is like entering an unknown dungeon for me. Mom says I have to learn to suppress my fear, my discomfort to face new train journeys, meet new people and encounter new situations that may happen.

Being autistic, I don’t like change. I need predictability. Traveling by train for almost two hours every day to travel between my Day Activity Center (DAC) and home is a new challenge for me.”

On the train, within the MRT station

Cheryl:

“Sitting in the crowd, I feel anxious. I will experience sensory overload. Mom gives me a phone to watch videos while traveling, but I still feel anxious. I have to make sounds and shake my body to regulate myself.

However, this sometimes causes hostile looks from strangers and even scolding from them. I know they don’t like me. But what should I do? I just want to go home.”

Esther:

“Singapore’s transport system is very well established. The MRT system may be easier for an autistic individual as there are announcements made at each approaching station stop, I have taught Shaun to listen to these announcements.

I wish all our bus systems could announce approaching stops as well. Right now, I’m going to teach Sean to look around for different landmarks before he rings the bell to go out.

Esther:

“Travelling in very crowded public transport takes a lot of courage from carers. I don’t know what might happen next.

What can cause my child? What can the public challenge? I have to be constantly alert and plan in advance the necessary actions when something happens… Should I continue with the trip? Shall I get off at the next stop to soothe my child?’

Cheryl:

“I need a rest! I have to leave the train! I feel overwhelmed! I do everything possible. I close my eyes and try to cut out all the factors that make me anxious.

But mom says I have to go home. May continues to encourage me to endure the journey. How much longer will this trip take?”

Esther and Sean at the MRT station. Photo by @larry.toh.photography

Esther:

“How could Shaun ask for help at MRT stations or bus interchanges when he is lost and forgets how to get to his destination?

How can we best equip our communities to support people with special needs in times of need?”

To learn to manage the inner feeling of anxiety

Cheryl:

“I notice when I reach each station on my trip, this strategy visually informs me how many stops I have left until I get home.

Sometimes I can sit down and adjust, but many times I can’t.

Now, with the “Can I have a seat please” strap, some kind passengers will give me their seat. Thank you! I need a safe place to travel and count my stations ahead.’

Cheryl:

“Like all travelers, I want to finish my journey home safely to have dinner with my family. Today I finished my studies at DAC, I hope mum and dad are proud of me as I gave it my all!

On days when I have a meltdown, I can’t complete my journey on public transport, resulting in the need to hire private cars. Sometimes I witness mom crying as it requires more transport charges.

I know they’re doing their best to support me and I really hope it’s a smooth journey home.”

How people with autism can travel independently in public transport

Esther:

“I’m glad I taught Sean the dos and don’ts of using public transport. Although the beginning was difficult, with consistency we achieved little by little.”

Esther:

“Having a child with autism requires lifelong learning and guidance for us and our child.

We must do everything we can to help him achieve independence.

One aspect is for him to travel independently to school or work in the future.

Tips for supporting colleagues and carers on public transport

In the course of Eng’s interviews for this photo essay, caregivers and disabled people shared their experiences with other travelers, with the travelers’ first reaction being to pull out their phones and start taking pictures or verbalize “useless comments” to them.

Eng wonders, “By doing this, have we spared a thought for that individual and his/her family members?”

Here are some tips on how we can support a passenger who has autism or their carer if we meet them on public transport:

You can also take note of whether the person is carrying a “Can I Be Seated Please” card and lanyard, which lets you know that someone may need a seat during their trip due to an invisible medical condition or disability.

Top images by Larry Toh (@larry.toh.photography on Instagram)