Not getting an autism diagnosis is in some ways harder than getting one

"I know from my firstborn that autism isn't an easy road. But now with my second, there's no clear path."

This story has been told to Kidspot by the Australian mother of a boy with autism.

“Can I have the rest of my party bag lollies?” Will* asked the other day.

“No, it’s almost dinner,” I said, going back to my Zoom with his brother’s OT.

 “It’s not fair!” he screeched before stomping off and slamming the door.

“Was that Henry?” the OT asked, referring to Will’s autistic brother.

“No, it was Will,” I replied. She looked surprised, we moved on.

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"I arrive first at playgroup so he has first pick of toys"

Will has always had big feelings.

At school, he’s affable, gentle, a fair leader on the playground. Adults love him. He thrives on structure, doing the right thing, and following the rules.

But at home, if he doesn’t get what he wants, watch out.

After years of watching Will melt down over what seemed like run-of-the-mill disappointments, I wondered about autism.

When he was three, I always made sure we arrived first at playgroup so he could get first pick of his favourite big cats. One day though we were beaten to the tiger by a toddler.

Staring darkly at the little boy, Will gritted his teeth. “THOSE ARE MY CATS!” he shouted.

The toddler’s lip quivered and he dispatched to his mum. I was embarrassed but relieved. Reunited with the tiger, Will was happy. The melt-down was over.

This is a cop-out, I know.

Image: Supplied

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I’m a strict mum… most of the time

My parenting style is normally firm. We have fun, but I expect the kids to tow the line. But I have trouble with the fallout when Will doesn’t get his way.

That’s partly because of his unbreakable spirit.

Time outs worked for our eldest, who quickly learned compliance equalled freedom. Time outs never lasted more than a couple of minutes.

Will was different. Once I stood blocking his way in the hall for an hour while he shouted at me and ran at my legs. Eventually I had two choices: lose my s**t spectacularly or give up. I did both.

His preschool teacher said to me, “You’re scared of Will, aren’t you?”

I had to admit, in a way I was.

There were signs of autism but not enough for a diagnosis

I’m making my child sound awful. He’s not.

Most of the time he’s a delight. When he’s happy, his eyes turn into two thin half-moons to accommodate the enormousness of his smile.

He’s mostly grown out of public meltdowns, but in private things are harder, so he sees a psychologist.

“Will shows some traits of autism,” she told me. “How do you feel about getting him tested?”

We decided to fill out the screening questionnaire. I’ve done these questionnaires before and could tell Will wasn’t going to “pass”.

The psychologist confirmed it. “Will doesn’t meet the diagnostic criteria for ASD.”

Not getting an autism diagnosis is in some ways harder than getting one

Some people might be relieved. I know from Henry, being autistic isn’t an easy road.

But label or not, Will is struggling.

I spoke to my friend – her son Ben has been tested three times. Every time he’s failed to meet the diagnostic criteria.

“Once the school requested it,” she said. “When it came back negative, I was so confused. There were red flags, but not enough for a diagnosis. I felt I’d let the school down.

“When you get a diagnosis. There’s a clear path. You get the forms for NDIS, go on the waitlist for therapists. Without a diagnosis, you’re still dealing with the behaviour and it’s hard to know what to do.”

I’ve heard people refer to kids like Will as neuro-spicey. It’s cute. But it ignores Will’s serious cries for help. Because he’s not autistic, he doesn’t get flagged at school for the emotional regulation workshops, we don’t have funding to send him to OT, and we pay for psychology out of pocket.

Will doesn’t need much, but with the right support he’ll grow into an adult equipped to face the world without flying off the handle. And don’t we need more grown-ups like that?

*Names have been changed

Originally published as Not getting an autism diagnosis is in some ways harder than getting one