A Cold Put My Non-Verbal Son in Intensive Care. Here's What Went Wrong

When your child can talk, they can tell you. "My ear hurts." "My tummy's sore." "I feel sick." It's a small thing, but it's everything.

My son Rocco is eight, autistic and non-verbal. When he gets sick, he can't tell us any of that. And that is one of the hardest, most frightening parts of this whole journey that nobody really talks about.

You're working in the dark

If Rocco falls and breaks something, we can see it. If he's coughing or wheezing, we can hear it. But anything inside — a sore throat, an earache, a pain in his stomach, something that just doesn't feel right — we have no way of knowing.

The same goes for everyday life. A sore finger. A headache. Something hurting that we can't see. He has no way to tell us where it is or how bad it feels. So we guess. We read him. We become detectives, working off instinct.

Most of the time, thankfully, Rocco keeps pretty well. He doesn't get ill that often. But there was one time, about four years ago, when he was around four, that showed me exactly how dangerous this can get.

It started as a cold

He seemed to have a cold, and he was wheezing. We thought it might be a chest infection — but that was a guess, because he couldn't tell us. We took him to the GP, who gave us some medication and said if it didn't improve in a couple of days, to take him to A&E.

It didn't improve. So we went.

And A&E was a nightmare — not because of the illness, but because of the communication.

Saying it once is never enough

Every single time a new nurse or doctor came over, they spoke directly to Rocco. And every single time, we had to explain, again, that he's autistic and non-verbal — that he's not going to answer you.

Over and over. Every new face. We were exhausted before anything had even happened.

I don't think any of them were unkind. I think it was simpler and sadder than that: they hadn't been trained for a child like Rocco. If they had, they might have come to us — the two people in that room who actually know him — and asked, "What's the best way to do this with him?"

Not once were we asked that. Not once.

When it went wrong

They were trying to give Rocco an inhaler. He didn't like it, and he had no way to tell anyone that. But instead of stopping, the staff pushed — they forced it on him.

Because of that, the air ended up outside his lungs instead of inside them. He developed emphysema, and a chest infection that had started as a simple cold became something far more serious.

Rocco ended up in intensive care. He spent three days in the ICU before his oxygen levels came back to where they needed to be.

All from a cold. All because there was no way for him to say "I don't like this, stop" — and no one asked us, the people who could have told them.

The fear you carry

The thing I'm most scared of is missing something serious. Something going on inside his body that he can't tell us about, that we don't catch in time.

We live in Australia. What if he got bitten by a snake, or a spider? Would he be able to tell us? Probably not. You sit with that, quietly, all the time.

What I'd tell another parent

I can't sugarcoat this one. There's no neat trick. When your non-verbal child is unwell, you go on your instincts. You break down everything they're doing — are they off their food, are they acting differently, have they got a temperature, are they holding themselves strangely. You piece it together in the dark and you hope you've got it right and that it's nothing serious.

But there is one thing I'd say, learned the hard way.

Always be upfront that your child is non-verbal — but don't assume that's enough. Don't assume that because you've said it, they've understood it. In our experience, that's just not the case. You may have to say it again, and again, and stand your ground when something doesn't feel right. You know your child better than anyone in that room. Don't let being told otherwise stop you from speaking up.

Rocco is well now. He came through it. But I think about those three days often — and about how much of it came down to one thing: he couldn't tell anyone what he needed, and no one thought to ask the people who could.

If you're looking for providers who understand children like ours, that's exactly why we built FindLocalNDIS — to help families find people who get it.