What Nobody Tells You About The Waiting

Everyone tells you the waiting lists are long. Nobody tells you what the waiting actually does to you.

My son Rocco is eight, he's autistic, and he's non-verbal. Looking back, so much of the early part of our journey was just waiting. Waiting for answers, waiting for a spot, waiting to feel like we were finally doing something. Here's what I wish someone had told me about all that waiting.

First, You Wait To Be Told What You Already Know

When we first saw the paediatrician, he was clear. He told us what he thought it was. I asked him — if it's not that, what else could it be? I'll always remember his answer. "It will be that."

And then the waiting began. Nine months of it. A psychologist visited Rocco at daycare. They visited him at home. We took him to their office. Report after report, question after question. Then you wait for another paediatrician appointment to pull it all together.

It's a strange, unsettling kind of waiting — you more or less know what you're going to be told, but you have to sit in limbo for the best part of a year before anyone makes it official. And the whole time, you just want answers.

Then You Wait For The Help

Once you know your child needs support, you start ringing around. And that's when you meet the real waiting lists.

We found one speech therapy practice with a waiting list of fifteen or sixteen months. We went on it. We waited. And when we finally got there — it wasn't a good fit. All that waiting, for something that didn't work for us.

There's another thing nobody warns you about. You choose a place based on its reputation — the founder, their philosophy, the great feedback. Then you arrive and you're seeing a therapist who's just out of university. They have to learn somewhere, I understand that. But it's not what you waited all those months for, and it's not what you thought you were getting.

We even had a practice take us in for a speech assessment, charge us for it, and then tell us afterwards they had no spots available. One appointment in. If that was the case, why take the appointment at all? It left a bad taste. I won't name them — they're local — but it's the kind of thing that knocks the wind out of you when you're already stretched thin.

The Clock In Your Head

The hardest part of waiting is the clock. You hear "early intervention" everywhere. Early intervention, early intervention. So every week your child isn't getting help, you feel guilty. Like you're not doing enough. Like time is slipping away.

And while you wait, you're often paying out of pocket — two or three hundred dollars a session, diagnosis not even confirmed yet. When it's your child, you pay whatever you have to pay. If you have to get another job to do it, then that's what you do. You just find a way.

The Hardest Thing I Learned

Here's the lesson that took me a long time to accept, and it goes against everything you're told.

Mediocre therapy can be worse than no therapy.

The pressure of "early intervention" makes you feel you have to grab anything, as fast as possible. But rushing onto any waitlist, with any provider, and ending up with therapy that isn't right — that isn't actually progress. Of course good therapy, early, is the ideal. But if the therapy isn't up to standard, I genuinely don't believe it's worth doing. The right fit matters more than the fastest spot.

That realisation took a lot of the guilt away. Waiting for the right provider isn't failing your child. Sometimes it's the most sensible thing you can do.

What You Do While You Wait

You don't just sit there, of course. You research everything you can — though honestly, there's not as much solid guidance out there as you'd hope. In our case I focused a lot on dietary changes for Rocco, since that's my own field. You join multiple waitlists at once. You try things. You cope however you can.

And somewhere in all of it, I had to learn something about myself. When your child has autism, your whole perception of them shifts. You start reading everything they do through that lens. But I had to keep reminding myself that Rocco was also just a four-year-old back then — and four-year-olds go through phases, have good days and bad days, push back, just like any kid. Not everything is the autism. He's a whole little person, not a diagnosis.

If You're Waiting Right Now

If you're stuck on a list today, frightened, watching that clock — I'm not going to give you false comfort. The waiting is hard, and it's unfair, and the guilt is real.

But here's the honest thing I'd tell you. Don't let the panic push you into the first available spot just to be doing something. The right provider — someone who genuinely understands your child — is worth waiting for, and worth searching properly for. That's the whole reason I built this. If it helps you find the right fit a little faster, you can search for providers here.

We're still on this road. Still waiting for some things, still learning. But I've stopped feeling guilty about waiting for the right help instead of just any help. That shift alone made the waiting easier to carry.