Mase with a book written by Dahlia, which was inspired by the stories she told him to reinforce social learning.

If you’re the parent of a child with autism, you already know what it means to live in a bubble, writes Dahlia Malaeulu.  

When our son was about three and a half, his preschool teachers told us they’d noticed what they described as “concerning” behaviour.

Being a teacher myself, I knew “concerning” was code for something else. It could mean anything on the wheel of misfortune: a problem with behaviour, or learning, or development.

As we found out later, with autism, you can get all three.

Mason — or Mase, as we call him — was struggling to maintain friendships. He couldn’t always read social and facial cues. When a teacher gave him the “stare of doom”, he would carry on his merry way, walking through, and sometimes on, children, to get to the other side of the room. And, when other children gave him the “stare of doom”, he’d carry on patting their hair because it felt interesting to the touch.

We thought: “He’s a kid. He’s just getting used to the rules of the world, right?”

But, when we monitored his behaviour, we found incidents like this were happening more than five times a day. Every day.

This didn’t even include the meltdowns if someone or something wasn’t doing what he expected. He’d lose it if his train tracks were accidentally bumped out of place, or if our plans were changed at the last minute.

Friends and family comforted us by telling us he’d grow out of it, that it was just a phase. But, as time went on, the concerning behaviour became more obvious and noticeable, especially in public.

Mase, aged 3.

The breaking point came when we went out for a family day to a large playground in the city. Mase raced through the jungle gym playground and accidentally stood on another toddler’s hand. I apologised quickly but the parent of the crying child wasn’t impressed. I overheard the mother say to her partner: “They need to control their child.”

Feeling like our every move was being watched, I told Mase we had to leave. He then ran up to the same toddler whose finger he’d stood on and started playing with the glittery headband on her head. The mother quickly grabbed her child. “What is wrong with him?” she said angrily, walking away.

To people who didn’t know him, his behaviour defined him. I felt defeated, frustrated and heartbroken. Not with our son, but with the world. How was the outside world going to understand and accept our child?

There was so much to this beautiful boy that people didn’t get to see. Like his huge heart and his intelligence. When Mase loved something, he was fully committed and devoted. By the age of four, he knew the names of more than 80 of Thomas the Tank Engine’s friends, and the types of engines they were. He loved books and was able to recite whole picture books by heart. He could remember the words to songs and whole scenes from movies very easily.

At six, Mase was officially diagnosed as having autism. He was on the high-functioning end of the autism spectrum — meaning he was highly independent with obvious autistic tendencies.

By then, we’d already identified the triggers that set off the undesirable behaviour — crowds, tiredness, and any disruption to his routine being the most obvious.

And we had adapted every aspect of our lives to better support him. We became highly organised. We were sticklers for routine. We made sure to prepare Mase for any unexpected changes. And we went all out on visual charts and storytelling that taught him positive behaviour and abstract ideas.

Mase (left) and his brother Isaia.

Being Sāmoan, we also wanted to make sure that he understood what it meant to be a tama Sāmoa.

We also made the conscious decision to tell our family about Mase’s diagnosis so they would better understand him, his triggers, and how to support him.

I knew that people who weren’t considered “normal” were on the list of things that my Sāmoan parents’ generation weren’t used to talking about — unless it was to laugh at them and label them as valea (stupid) or leaga le ulu (mental, crazy).

My dad’s first response was: “What do you mean . . . nothing is wrong with him!”

My mum’s left-field response was: “Maybe it’s the teachers, I don’t think he likes them. Maybe they’re hitting him?”

After the initial denial and blame, they became staunch advocates and active “trigger monitors” for their grandson, who needed their love and support to cope with the outside world.

It takes a village to raise a child and, thankfully, our family village supported us and the changes we had to make to meet Mase’s needs.

That included not staying too long at large family events and gatherings so that Mase didn’t get upset or over-excited from being too tired or having too many people around. Or getting separate accommodation on family holidays that included a chill space for him to rest and recharge. Or making sure we prepared him for any changes to the schedule. Or simply cancelling if the change was just too much for him to handle.

Ultimately, these sacrifices gave us peace of mind as a family and made it possible for us to provide safe opportunities for Mase to be a kid and have all the experiences that came with that. In a way, he was in a bubble long before Covid-19 hit the world and we were forced into our own bubbles.

Mase (bottom right) with dad Mani, mum Dahlia, and brother Isaia.

My son’s bubble was made up of us, his grandparents, and other close family. With the love and support of family and amazing teachers over the years, he’s made huge progress. He’s now able to communicate his needs and wants and better regulate his emotions, which has made it possible for us to expand his bubble to now include friends and extended family.

And we’re very hopeful that, someday, Mase won’t need a bubble at all.

Every day, we’re reminded of how blessed we are to have a son with autism.

Our Mase is almost nine years old now. He’s funny as well as smart, and honest to a fault. He always tells it like it is — it’s near impossible for him to lie. And his attention to detail and good memory keep us all in check.

Sometimes I’m envious of how free he is. He lives in the moment, unbound by judgment and social expectations.

Mase has helped us to become good parents. We’ve become stronger as a family, and just better human beings all round — more patient and compassionate.

Last year, when Sāmoa was hit with the measles outbreak, Mase decided to donate his Christmas presents to “the sick children in Sāmoa who might not get presents”.

When my mother passed away earlier this year, he told me: “Don’t cry, Mum. Nana is right here in our hearts forever.”

And just this past week, he decided to write a letter to his teacher about the changes in our world caused by Covid-19.

Dear Mrs Bennett, he wrote:

I want to tell you about The Invisible String. The invisible string connects us all together. You can’t see the string but you can feel it. Even when I’m at home I feel everybody’s love in the invisible string. Because we are all staying home to stay safe from the virus.

So even though I miss all of my friends and being at school, I know that we are all still connected by the invisible string.

From Mason M.

We’ve been told a number of times that Mase is lucky to have us as parents. But it’s the other way around. He’s been our greatest teacher on this journey.

• April is World Autism Month.

© E-Tangata, 2020