• Sometimes I worry that the diagnosis is just the excuse I need to be an even lousier, lazier parent. (Flickr/ Kristina Alexanderson)Source: Flickr/ Kristina Alexanderson
Ian Rose isn’t sure about the autism spectrum disorder (ASD) diagnosis for his son. But a family holiday proves they’re going to need the kind of support it can bring.
By
Ian Rose

13 Sep 2016 - 12:58 PM  UPDATED 13 Sep 2016 - 1:06 PM

This was meant to be a halcyon day, the stuff first memories are made of.

The two of us, father and five year-old son, paddling in a kayak among the limestone islets of Vietnam’s glorious Ha Long Bay, morning sunlight framing the kind of scene that cries out screensaver, maybe even motivational poster.

Only, instead of gazing out in wonder at nature’s bounty, or up at his old man with a look of adoring reverence, the boy’s features are twisted in rage, body taut with agitation.

“NO, DADDY. YOU’RE STUPID! I TOLD you I don’t want to go that way. You’re not LISTENING to me.”

I explain, as gently as possible, how we need to keep up with the others and not get left behind, that there’s exciting stuff over that way we really should see.

“But I want to look for ANEMONES! Right here. I wish I was in the boat with mummy. Your face is ugly.”

It’s been about two months since the paediatrician advised us, on meeting our son and asking us a bunch of questions about him, that we might want to check out a website on Asperger’s Syndrome. That night we sat up in bed, staring in silence at the screen we held between us, mentally ticking off items on the list of early signs.

All of those traits we’d thought uniquely his.

The way, as baby and toddler, he’d be mesmerised by anything spinning - so that the glimpse of a ceiling fan through a shop doorway required us to step inside and take a good, long look.

Later, his immersion in the world of Shaun The Sheep, a focus that tightened on particular characters and details from the show - first the scarecrow, then the patches on his clothes (“Daddy, do you have any clothes with patches on? Do I?”); the belligerent old lady, then the handbag she wields as a weapon (“Mummy, is yours a handbag or a shoulder-bag? Is this a clasp or a buckle?”)

Wasn’t I staring into space, in a world of my own, aged five, just as he is now? I was just as daft, and I’m sure I had my obsessions.

Textbook, it said there.

Even the amazing tastebuds. (The kid could call out the merest hint of ginger in a soup from the age of two). Certainly that loopy gait. The clumsiness, simian table manners and fondness for very silly behaviour are further evidence of what his psychologist calls “the way he’s wired”. Not just lovable quirks I’ve passed on, then.

Evidently his fixation on his “special interests” (besides the scarecrows and handbags, he has a thing for, ummm...axes, and then there are the anemones) is a strategy designed to claim or keep control. Of the unpredictable world in which he finds himself. Perhaps of the anxiety he feels.

Long before we started on this path towards diagnosis, he had me and our home environment well under control. There is a menacing troop of scarecrows on permanent duty around our front yard, the house is littered with op-shop handbags and I’ve passed entire weeks fashioning an assortment of axes from cardboard, foil and sticky tape in the quest for a quiet life.

Sometimes I worry that the diagnosis is just the excuse I need to be an even lousier, lazier parent. It’s hard work, setting boundaries. Could the spectrum placement be a license not to bother?

And then there’s that “in my day” voice nagging away, in the nasal tones of an inner Eric Abetz. Children weren’t diagnosed with “high-functioning autism” when we were growing up. They just learned to fit in. Or didn’t.

Wasn’t I staring into space, in a world of my own, aged five, just as he is now? I was just as daft, and I’m sure I had my obsessions. No-one forced me into cognitive behavioural therapy back then, I just stumbled along my own path (with, yes, a somewhat loopy gait) through the jungles of childhood and adolescence, and into the mild blue yonder.

Keeping my eyes fixed to the floor (looking at him directly when he’s in the zone makes him worse), my voice quiet and calm, I tell my son I’m sorry that there are no anemones here.

“Don’t you think we should try to catch up with mummy and the others now?”

“OKAY,” he finally agrees.

You are making me ANGRY, because it makes my brain tired when you ARE NOT LISTENING to me, and when you shout and are cross that makes my brain tired too.

We’ve had battles every day of the holiday. Vietnam, for some reason, has triggered an ardent new enthusiasm for fire-extinguishers. Fire-hydrants, too. Pretty much anything inanimate and metallic that’s used for putting out fires will do it for him.

Every time we check into a new hotel, he’s away up the stairs, counting the things. Down every street, he’s on the look out. We were eating lunch in a restaurant the other day and he wandered off from the table and started checking the cupboards under the stairs. “DADDY! Quick, look! FIRE EXTINGUISHER!”

He can get pretty grumpy if anything gets between him and a fire extinguisher, like, say, having to eat his lunch, or make a flight.

And it’s not just been battles with the boy. His sister, aged seven, has looked on at his meltdowns, watched us do the leeway limbo on account of his condition, and she’s mighty intrigued by what she sees. Her behaviour has nose-dived. Because if he can get away with it, why shouldn’t she?

I’ve been asking myself if we’re doing the right thing, treating him differently; are we indulging him, or ourselves? Are we making a mess of this whole parenting deal?

A couple of hours after kayakgate, we’re packing up our cabin on the boat because our two day cruise of Ha Long Bay is coming to an end. Our son is losing it, again. 

“You are making me ANGRY, because it makes my brain tired when you ARE NOT LISTENING to me, and when you shout and are cross that makes my brain tired too.”

This is the first time he’s said anything like this. I don’t think I’ll ever forget the look on his face as he’s yelling at us in that little cabin. Eyes imploring, forlorn, red cheeks streaked with tears.

“And I don’t LIKE my brain now.... because it .....isn’t ....WORKING.”

I wonder how many cardboard fire hydrants we’re going to have to make, back home.

As many as he needs.

Image courtesy of Flickr/Kristina Alexanderson.

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