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When to tell my son about his autism

Like many other thousands of Australian children, Ian Rose’s son has a diagnosis of autism spectrum disorder, without intellectual disability. Which he’ll have to be told about, one of these days...

autism

Ian Rose will explain to his son that his autism diagnosis will make things tricky sometimes, but that's ok because he's there to help. Source: Getty Images

I steal a furtive sniff of my sleeping son’s forehead before I gently shake him awake. (Hey, I’m only human.) Through the fog of fractured slumber he peers up at me, with question marks for eyes.

“What day is it, daddy?”

“It’s Wednesday.”

“Does that mean I have to go to school?”

“Yes it does.”

He stretches and harrumphs, face twisted in a Sid Vicious grimace.

“I don’t want to go to school. I don’t like school.”

“I know.”

Nothing much to remark in this little scene. Pretty standard interchange between six year-old and parent, right? The twist here is his diagnosis with autism spectrum disorder.
He’s wising up to the notion that there’s something going on, something that makes it hard for him to fit
He doesn’t know he has ASD. Yet. Though he’s wising up to the notion that there’s something going on, something that makes it hard for him to fit. That can sometimes make people be mean to him, and school more than the standard drag it is for other kids his age.

We are going to need to have the talk soon.

It’s on the “mild” side, his autism, what they used to call Asperger’s, until the term was retired in 2013. You might not spot it if you’re not looking for it.

There are plenty of kids his age who are obsessed with spiders, though maybe not to the point that they look for them everywhere they go, and will always choose an extract from an arachnid anthology over a more conventional bedtime story (his favourite, by a stretch, the huntsman, our latest captive specimen glaring banefully at me from its temporary home, our son’s beloved glass terrarium, as I write).

Plenty of kids find it hard to sit still, or to notice when their face is smeared with the remnants of their latest meal. Plenty “daydream”. We know from his psychological assessment that he struggles with processing and working memory, but there will be others in his age group with similar cognitive baggage. And others, like him, who find it easier to play alone than join in with a group.

The line between the quirks of childhood development and his disorder can be hard to make out.

Disorder. I hate that word. Mechanical. Cold. Why does it have to be autism spectrum disorder? Why not, I don’t know, autism spectrum experience?

The diagnosis, which we more stumbled into than sought, means we understand a little more clearly what’s going on for him, and how we can support him.

He submits to weekly sessions with our friendly local speech pathologist. They get him out of school early. We talk about following the “group plan” and doing what’s “expected”. Notwithstanding his school-aversion and the occasional rage (more often than not triggered by his older sister’s teasing), he’s doing okay.

He’ll be seven in a fortnight. In the years ahead, it’s likely that the differences between our son and most of his peers will become more apparent, an increasingly nuanced social landscape more treacherous to navigate.

“I don’t like being me,” he told me recently. Ooof.
I’ll try to explain that the way he experiences the world is a little bit different from the way it is for most people
Yes, we’ll need to have the talk before long. I’ll try to explain that the way he experiences the world is a little bit different from the way it is for most people. Which is going to make things tricky sometimes. That there’s some stuff he’ll have to try to learn, which comes naturally to others, but that’s okay, because we’ll be there to help him.

I won’t be using the word disorder.

Like most parents, what I ultimately want for my children is their happiness. Which is largely, agonisingly, out of my hands.

I may not be able to ensure my son finds enduring happiness in life, whatever the hell that is, but I can at least let him know he has as much right to it and as much chance of finding it as anyone else. I can at least try to convince him of that.

School pick-up time, later that day.

He races towards me, dropping his bag behind him as he opens his arms to my embrace.

His day was fine, he guesses. What’s tomorrow, he wants to know.

“Thursday,” I advise.

“Does that mean I have to go to school?”

“It sure does.”

He frowns for a moment, looks down, then gives a little shrug.

“Come on, let’s go home,” I suggest. “There could be a huntsman in the mailbox.”

He looks up, clouds lifting from his face, then turns and races on ahead, all cares dissolved in an instant. I’m left to carry his bag, and just for now I don’t mind a bit.

That talk we need to have can wait a while yet.

Catch up on Insight's episode, Diagnosing Autism, on SBS On Demand:

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5 min read
Published 13 February 2018 10:32am
By Ian Rose


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