What Disability Does To The Rest Of The Family

Nobody warns you about this part.

They tell you about the diagnosis. They tell you about early intervention. They tell you about therapists and waitlists and NDIS plans. But nobody sits you down and says — here's what this does to everyone else in your family. Here's what it does to your marriage, your other children, your relationship with the world outside your front door.

I'm going to try to say some of it here. Not because I have answers. But because I think a lot of families are carrying this quietly and there's something in knowing someone else is too.

The Diagnosis Moment

I can still remember the paediatrician's face.

He told us what he thought it was — before the formal assessment, just his clinical read. And my first question was: if it's not that, what else could it be?

I'll always remember the look he gave me. He didn't say anything. He didn't need to. He knew. And some part of me knew too. But I wasn't ready to stop looking for the other explanation.

My wife and I were both in denial. I don't think that's unusual. I think it's actually the only sane response to something that big landing in your life all at once. The denial isn't weakness. It's the mind protecting itself while it works out how to carry what's coming.

What Changes Forever

My son was diagnosed around the same time as COVID. So the world shut down at the same moment our world changed completely.

We haven't been on a flight since. We're originally from the UK. Our whole family — parents, siblings, nieces, nephews — they're all still there. And we haven't been back. Because every time we think about it the questions start: Can he handle a flight? How do you keep a non-verbal seven year old occupied for twenty-plus hours? What happens if he can't cope at 35,000 feet?

It would have been easier when he was younger and less active. But you keep waiting for the right time and the right time keeps not coming. And in the meantime your family in the UK gets older and your kids grow up without knowing their grandparents properly.

That's just one thing. There are so many things like it. Small and large. A park we can't go to after dark. A restaurant we've tried once and won't try again. A holiday that exists only as a plan we haven't cancelled yet.

The Split Family

One of us is always on. Always.

If my wife is talking to our daughter when we're out, I'm locked in on my son. Not because we've agreed to a system — it just becomes the way things work. Because if he got away from us for ten seconds, he cannot tell anyone who he is. He cannot tell anyone his name or where he lives or who his parents are. He cannot ask for help. And that thought doesn't leave you. It lives in the background of every outing, every moment in a public space, every time you take your eyes off him for a second.

Our daughter sometimes doesn't get to do the things she wants to do. Not because we don't want her to — because one of us always has to be somewhere else. So we split. My wife takes her to the thing she's been looking forward to. I stay home with my son. Or the other way around. It's our norm. But our norm means our family rarely does things together the way other families do.

What people don't understand about the autism spectrum is how vast it is. People mean well when they say things like "autism is such a gift" or "people with autism have special abilities." I've heard it many times. And every time I think — you tell me about my son's special abilities. He can't tell me his name. He can't ask me for a glass of water. He can't tell me what hurts.

The spectrum is enormous. What it looks like for our family is not what it looks like for every family. And the gap between those experiences is something words don't really cross.

What You Don't Talk About

We don't really talk about the hard parts. Not because we're suppressing them — just because talking about it makes it more real. And sometimes you don't want it to be more real. You want to just get through the day.

I don't think we feel ungrateful. I don't think we feel like we're complaining. I think we just know that most people don't have the frame of reference to understand it. And explaining the frame of reference takes more energy than we have left at the end of most days.

Our relatives are in the UK. There's no village here. No grandparent who can take him for an afternoon so we can breathe. No aunty who knows his rhythms and can step in. It's just us. And that's a specific kind of lonely that's hard to explain to someone who has family nearby.

The hardest moments aren't the big ones. They're the ordinary ones. Seeing your son next to children his age who are talking to each other and wondering if he notices. Watching those children be kind to him — they usually are — but seeing the confusion in their faces when he doesn't respond the way they expect. That confusion isn't cruel. But it sits in your chest anyway.

What Gets Better. What Doesn't.

I don't think you ever fully accept it. I think you adapt. Constantly. Some things get better — genuinely. His school is wonderful. His teacher Mr Dean has been with him for two or three years now and is genuinely great. There are people in his life who see him fully and that matters more than I can say.

Some things get worse, or at least more complicated, as he gets older and bigger and more his own person.

It's a rollercoaster. Not the kind with a beginning and an end. The kind that just keeps going and you learn to lean into the turns because fighting them makes it harder.

If I could say one thing to a family who just got the diagnosis — I wouldn't give advice. I'd just say: you don't have to manage anyone else's feelings about this. Not relatives, not friends, not strangers who say the wrong thing with the best intentions. Your job is your family. That's enough. That's more than enough.

FindLocalNDIS was built because our family needed it. If you're navigating the NDIS and trying to find providers who genuinely understand your child's needs — that's what we're here for.

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