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My son's autism is real

Today is World Autism Awareness Day. But for some parents it can still feel like the condition needs defending and constant explaining.

autism

Our son had autism with no intellectual disability, though working memory and processing looked a pair of cognitive Achilles heels. Source: Getty Images

I haven’t seen Terry in years. He’s over from England, we’re catching up and he asks after the kids.

Once I’ve given the short answer, yeah they’re great, getting so big, and expensive, ha ha, the next part of my response comes out as a question.

 “And you know about our son’s diagnosis with autism spectrum disorder?” (Was it obvious from the stuff I posted on social media? Had I shared it? Was I meant to?)

 My old friend offers a sympathetic nod.

"Yeah, right.” He takes a slug of coffee and wriggles his eyebrows. “Who hasn’t got one of those, these days?”

Terry’s candour is one of the things I’ve always liked about him.

Today is World Autism Awareness Day. But, for some parents, it can still feel like the condition needs defending and constant explaining.

I wonder what Terry would think if he saw me parenting the boy mid-meltdown.

The kid red in the face, body taut, shaping to hit me or fling the toy, garden tool or kitchen utensil he has clenched in his tight little fist.

Me standing there, gaze averted, waiting for him to calm down enough that I can put my arms around him, hug him fast, because I have no clue what else to do.

What kind of boundary-setting is that?

We stumbled into diagnosis two years ago when our son was five.
I wonder what Terry would think if he saw me parenting the boy mid-meltdown. The kid red in the face, body taut, shaping to hit me or fling the toy, garden tool or kitchen utensil he has clenched in his tight little fist. Me standing there, gaze averted, waiting for him to calm down enough that I can put my arms around him, hug him fast, because I have no clue what else to do.
A few concerns around minor developmental delay and emotional regulation eventually led us through the doors of a paediatrician, who pointed us towards a website on Asperger’s.

The page on early signs was like a cacophony of chiming bells. 

A clutch of assessments came in affirmative.

Our son had autism with no intellectual disability, though working memory and processing looked a pair of cognitive Achilles heels.

You might not see my son's condition if you’re not looking for it. None of his behaviour, taken alone, looks like much.

He’s just turned seven. Boys his age act weird anyway, right?

So he likes to bounce. There’s an armchair of mine he likes to stand on, facing the backrest, which he grips with both hands as he pounds up and down, a few minutes at a time, a handful of times a day. Shame about that armchair.

He’s kind of uncoordinated, and prone to getting food all over his face, but I’m a mucky doofus myself, and I don’t have a disorder.

Sure, there’s been a parade of passionate interests throughout his young life, his special enthusiasms which, one by one, have hogged his spotlight, taken their turn as the first and last thing he thinks about every day, devouring the lion’s share of his conversation and  energy.

Ceiling-fans.

The rolling stock of the nearby Puffing Billy steam railway.

Scarecrows. Fire hydrants (mercifully brief, that obsession). For some time now, spiders. Urggh, indeed.

But then what seven year-old boy doesn’t have his little fixations, or display an ardour for classification? 

And who doesn’t have certain sensory bete-noirs, after all?

I’m no fan of a fork’s scrape across a plate, myself - okay, I don’t feel the need to squeeze my eyes shut and press my hands to my ears when I hear it, but it’s all relative, right?

No, none of the behaviour, taken alone, looks alarming.

But put them all together, and they start to add up. This is why when we got our son’s diagnosis, it came neither as shock nor surprise, but confirmation of a fear we never knew we had.

I know where Terry’s coming from, with his “there’s a lot of it about” aside. Aren't we too keen these days to label our children with some condition or other?

Can’t these labels become a license for slack parenting and errant behaviour?

I’ve known Terry long enough to call him out, and it doesn’t spoil our reunion.

Our son’s autism no more defines him than it defines the terms of our parenting him. We’ll be making those up as we go along, like parents everywhere.

The diagnosis means we get some guidance, and can be better placed to support him, which is all we want to do,  because we love him.

Those meltdowns - they’re manageable, getting fewer and farther between, at least for now (I try not to think about the minefield of adolescence to come).

When they’re triggered, the toy is rarely flung, the blow is generally checked, any damage reparable.

In terms of my strategies to deal with it, I haven’t moved on from holding him tight and doubt I ever will.

I learnt to let go of the armchair a while ago. As long as it holds out, and as far as I’m concerned, the boy can keep on bouncing.

Some people need to bounce. More people than we once imagined. If we’re getting better at understanding that, isn’t it about time?

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5 min read
Published 29 March 2018 3:26pm
By Ian Rose

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