Commentary: The story that almost didn’t get told

Commentary: The story that almost didn’t get told

My perception of what’s “normal” changed after meeting a 17-year-old-boy with mild autism, writes Lam Shushan - but not before I nearly quit on him.

Chester Main Pic

My perception of what’s “normal” changed after meeting a 17-year-old-boy with mild autism, writes Lam Shushan - but not before I nearly quit on him.

SINGAPORE: We sat in the living room in silence, flashing polite smiles at each other every now and then. I looked at the big wall-mounted clock in front of me, and tapped my feet on the cold concrete floor as I waited for time to pass.

“This is going to be awkward,” I thought to myself.

It was the first time I was meeting 17-year-old Chester Sim, someone whom I had gone to great lengths to be introduced to for my assignment. I wanted to know more about his childhood struggles because of his mild autism, and how he managed to overcome it to integrate into mainstream society despite the challenges.

Yet there I was, not knowing what to say to him, because I didn’t know the right way to approach someone with autism.

WATCH: Not Special, Just Me - A CNA Insider Original

THE FIRST SESSION

Chester’s mother, Violet, came out of the kitchen with a tray of chilled lime juice, breaking the silence with small talk while handing us each a glass. “Chester, go to your room. Mummy wants to talk to them first okay?” she said.

While waiting for Violet to settle, my colleague Sarah and I looked at our notebooks, going through the list of things we wanted to talk about. We were to produce a long-form video exploring the concept of whether the world of special needs and the world of normal could come together.

Violet had requested to speak to us alone, so that she could go through what we should and should not bring up with Chester. He didn’t like being called “special”, she said, and he didn’t like talking about his childhood because he was bullied a lot, and it was traumatic for him.

With tired eyes, she looked at us and, as though 17 years of sorrow had been held in check, she began to pour her heart out.

Chester 1

Notes from our first chat with Violet and Chester.

She told us about her joy at giving birth to a boy after having had multiple miscarriages, but grief soon followed when she realised that he was not quite “normal”. At age three, he was diagnosed with mild autism, and Violet’s mother-in-law blamed her for ‘not eating the right things’ when she was pregnant.

She talked about her disbelief, how badly she wished her child to be normal, sending him to a mainstream school even though she knew he would struggle.

With tears in her eyes and a tone of guilt in her voice, she told us about how he was ostracised and bullied for being different, even by the teachers. Slowly, his self-esteem was eroded.

Then she brought out a portfolio of Chester’s drawings - extremely detailed depictions of tentacles and worms that engulfed a boy, violent drawings of guns and angry teachers with long rulers.

“People told me to send him to a psychiatrist, but what can I do? I can’t say, ‘eh can you draw something happier?’. This is just how he portrays the world,” she said.

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One of Chester’s drawings.

Yet there was a softer side of Chester that comforted her. “He’s very helpful. A small little bird or insect, he will say, ‘don’t step on it. Bring it to the grass’, even though he is afraid of insects.”

He likes animals, so I learnt, and has compassion for things that are smaller than he is, evident by the pets they keep at home. On top of fish and a terrapin, they also had an old adopted dog and two frisky cats, which had all gone into hiding upon our arrival.

I started to form an impression of who this boy was. Maybe he was one of those misunderstood savants with great hidden talents; maybe he was one of those extremely smart people that the world needed to see.

Then it was Chester’s turn to talk to us.

Autism is often associated with difficulty in communicating and relating to people or abstract concepts. But with his first few sentences, he came across as well-spoken and confident. He answered questions very thoughtfully. We talked a bit about his school, his hobbies, remembering to be extra sensitive when it came to the “A” word.

Chester 3

Chester's portfolio had recurring drawings of people being eaten alive by insects.

He was, in short, “as cool as a cucumber”, as his mother would put it, maintaining a nonchalant view on most issues. “Yeah I was bullied by both teachers and students,” he said matter-of-factly, “but other than that, the discrimination was rather petty.”

Even when we asked about his dark depictions of the underworld in his drawings, he simply replied: “Oh that was the theme for a school project.”

He seemed like any normal teenager - where was this broken and vulnerable boy that Violet was going on about? I was beginning to think that her stories were just the projections of an overprotective mother.

DIGGING DEEPER

A few days later, I called Violet to follow up. I told her that it was going to be very difficult to tell the story if Chester was so “normal”.

Granted, autism is a spectrum and there are different degrees of severity, but it wouldn’t do justice to all the other kids with autism if we led people to believe that it was something that could be overcome so easily, I felt.

Violet reassured me that Chester’s struggles were real, and that he just needed time to warm up before talking about it. “He may look like there’s nothing wrong, but he has an issue,” she said.

Chester 8

Chester (far right) and his schoolmates with Stephen Wiltshire (far left), the artist who can reproduce sketches of city skylines from memory.

Later, I would reflect upon the irony that perhaps it was people like him - the “normal” looking ones with autism - who in fact suffer in silence because people misunderstand their behaviour all the time. No one really bothers to ask them their story.

But at the time, I simply took Violet’s suggestion to try and get to know Chester better. I tried talking to him on the phone a few times, but our conversations never went beyond making arrangements for the next filming session.

Besides, what would a 17-year-old boy think if an older woman kept calling and wanting to be his friend? So I gave up trying.

Chester 4

The cats in the house often stay close by Chester's side.

Sarah and I decided to dive straight into the interview and work with whatever we had. But we came up against another road block - Chester did not want to appear on-camera. Even when we got him to agree to be filmed in silhouette, he still seemed reluctant to talk about his past.

This raised a huge dilemma: Why were we making this young boy, who has fought so hard his whole life to fit in, bare his vulnerabilities in front of everyone?

With all these complications, it would have been easier to just drop the story, walk away and look for a more straightforward profile who would let us talk about the things we wanted to talk about. But deep down, we knew that there was a very compelling story to be told, if we just dug deeper.

THE BREAKTHROUGH

The next time I went to their house, I went alone. By this time, even the dog had begun warming up to me, greeting me with a wagging tail as I entered. Then Violet said: “Today, Chester is going to show you his room” - a good start to the day.

Chester’s room was lined with shelves of action figures from floor to ceiling - Ultraman Dyna monsters, t-rexes and triceratopses, and other cartoon figurines from the 80s and 90s. It was as though I had stepped into a vintage toy museum - a very peculiar era for a millennial to take an interest in.

Chester 5

Chester's collection of action figures, which he sources from second-hand dealers.

As he showed me his collection, I was drawn in by his enthusiasm and how sincere he was about wanting to share his interest with me. I recalled what he’d said about how people judged him for having weird interests. It made me wonder if I had ever been mean to someone who liked things that I didn’t understand.

Then it dawned on me that perhaps the reason why I did not get what I was looking for in the previous interviews, was because I was still looking at him as Chester with autism, and not Chester for who he was.

I had been so fixated on asking the questions that I wanted the answers to. But once I started really listening to him, I was able to enter his world, and his state, where nothing is weird, nothing is abnormal, and we were able to talk a lot more freely.

I began to understand his perspective. He didn’t like to be called “special” not because he was petty and sensitive, but because he simply felt that there was no clear distinction between “special” and normal” anyway.

Chester 6

Ultraman and Dyna monsters among his collection.

Sure he had his quirks, but everyone has theirs, autism or no autism. So is it necessary to have a label for “special” and for “normal”, when the lines are so blurred between every individual?

We continued to chat casually about life. Then, for whatever reason, he decided he was ready to appear on-camera - fully visible, not hidden in shadows. I asked him questions like, “what is the world you see? Does it change according to your mood?”

He told me about his fantasy world and how he liked to imagine himself playing different characters sometimes, to “escape real life”. “It's no sunshine and unicorns but at the same time it's not grey and sadness all the time,” he said.

This, to me, would have seemed a very abstract and awkward conversation just a few weeks ago, but now this was his world, and I was trying to understand it. For the first time, I felt that we were on the same wavelength.

So, I asked, how did he eventually manage to fit in? Did it mean having to be someone he wasn’t all the time? No, he said. “Your persona doesn't always need to be someone you're not. Actually a persona could just mean being nice.”

That night, Violet invited me to join them for dinner. I had never felt more welcome in a household that barely even knew me. This was a family that had to bear the brunt of the nastier side of society, yet they were so warm and accepting.

Before I left, Violet thanked me for doing this, firstly because she wanted to help other families going through the same thing, but also because it helped they themselves reflect on what they had been through.

Chester 7

LESSONS LEARNT

I started on this assignment thinking that there was my world, the “normal” world, and there was the “special” world. And my story was to see if people from the “special” world could really function in society.

What I’ve discovered is that there aren’t two worlds - that’s a false, even dangerous, dichotomy - and we just have to expand our definition of normal.

People with mild autism like Chester may not have the same social habits or behaviour as most of us, but does that justify our fear, contempt or ignorance that makes us label and ostracise them? What we see as weird or strange could be perfectly normal to them, and they don’t mean any offence by being different.

The same goes for that person who smiles to himself on the bus, that screaming child at the table next to yours, that weirdo in the office. Could we learn to be more open-minded to somebody who is different? Because that nasty stare, that snarky comment, could go on to hurt somebody for a very long time.

But if we could change the way we respond, and really consider their stories - their true stories, not the cliches we force unthinkingly upon them - think of the impact that could make. The Chesters of the world would not have to suffer in silence.

And we would not even have to start by changing the world - just each of us, ourselves.

Source: CNA/ss/yv

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