An open letter to the parents of autistic children, from Hugh Van Cuylenburg.

"The pain of being a parent of an autistic child is not the child, it's the world."

They're the powerful words Hugh Van Cuylenburg shared on his podcast, The Imperfects, this morning. And they cut deep.

In a raw and vulnerable moment, Hugh opened up for the first time about how one of his children was diagnosed with autism three years ago.

"We haven't talked about it publicly yet because we needed time to process it and, quite frankly, all our focus needed to be on supporting and loving our child," he said.

But now, Hugh's ready to speak — and his message is one every parent, teacher, and human needs to hear.

He penned a moving open letter to parents of neurodivergent children — and it's impossible to read without feeling it in your chest.

Watch part of Hugh's emotional message. Post continues below.

Read Hugh's open letter in full below.

I would like to thank Grace Tame, Sarah Hayden, David Hobbs, Claire Willis and Sam Cavanagh. Three autistic people and two parents of autistic people who helped me in preparing for what I'm about to read. I would also like to thank my wife Penny Moodie.

So this is our story, and I'm sorry in advance if our neurodivergent journey is different to yours in a way that is upsetting. Three years ago, one of our kids was diagnosed autistic.

We haven't talked about this publicly as yet, because we needed time to process it, and quite frankly, all our focus needed to be on supporting and loving our child.

An open letter to the parents of neurodivergent kids.

I know life is unpredictable, but I never saw this coming. I never anticipated that I might one day experience this amount of pain. I never once thought I would know such heartache. This is the hardest thing I have ever known. I'm sure you feel the same. But, I'm still here, I'm still going. Because, we don't really have a choice, do we.

Most people will not understand this yet, but the pain of being a parent to an autistic child, is not the child. It is the world. The pain is seeing your child standing on the sidelines, confused, distressed and left out while the other kids instinctively understand the rules and the social norms.

It's watching the world overwhelm them, and then holding them through yet another meltdown, knowing they don't want to feel this way, knowing that they are feeling a deep shame, but their body and mind is overwhelmed and out of control, and there is nothing you can do except be there.

It's the quiet grief of unspoken words, of watching them struggle to express things that come so easily to others. It's the way people look at you in public when they are crying on the floor or smashing themselves against the wall, strangers assuming they are 'badly behaved' instead of overstimulated, exhausted, drowning in a world that refuses to slow down for them. And however hard it is for me, I know they are doing it so much tougher.

A recent study at Boston University has shown that parents of autistic children experience stress levels similar to combat soldiers. I know this won't surprise you at all. It makes sense. My nervous system is competently shot to pieces.

I never expected to carry a heart that is constantly torn between love and grief, between pride and fear, between the deep joy of knowing my child exactly as they are and the unbearable pain of watching the world struggle to do the same.

Some days, it feels impossible. Some days, I wonder how much longer I can keep holding everything together. And yet, somehow, I do. Somehow, we do. Because that's what we do — we keep going. We keep loving. We keep fighting.

The pain lies in the deep, aching loneliness of feeling like no one truly understands how hard this is, how much you love them, how much you are trying. It is the weight of carrying it all, every single day, knowing this is forever, and always feeling like you are not doing enough for them.

Listen to Hugh's open letter to parents of neurodivergent children on The Imperfects. Post continues below.

The heartache is seeing the impact on the siblings. They adore them, they love them, and yet, so often, they are left hurt and confused.

So often they are the ones who have to wait. Wait for our attention while we help them through a meltdown. Wait for plans to change because the world is too much for them that day. Wait for the fairness that sometimes doesn't come, because in our house, fairness doesn't always mean equal — it means doing whatever we need to do to keep them safe.

And I see it. I see the way they hold back when they want to complain, because they know their sibling is struggling more. I see the quiet patience, the sacrifices they don't even realise they're making. And it breaks me. Because while I know they are growing into the most compassionate, understanding people, I also know that, sometimes, they must feel like they come second. And I never, ever want them to feel that way.

I am a very different person to who I used to be. I'm very rarely present these days. I'm always worrying for them. Feeling distressed for them. I can't stop comparing. I wish I could, but I'm always comparing to other families.

I don't sleep anymore, at best, I am half asleep awaiting the next moment of overwhelm which can happen of any hour of the night.

When people ask how you're going and you genuinely find yourself lost for words. You can't say 'I'm good' because it's the furthest thing from the truth, but the truth is too much for anyone. The future? The future used to excite me. But now it just scares me.

Hugh Van Cuylenburg's letter should be the one thing you read today. Image: Instagram/theimperfectspodcast.

And the exhaustion. No one prepares you for what this does to a relationship. The stress, the endless decisions that feel impossibly high stakes — it wears you down.

Penny and I are a team, but some days, it feels like we're running separate races, just trying to survive. There are nights when we barely speak, not because we don't love each other, but because we have nothing left to give.

There are moments when we misunderstand each other, when the weight of it all makes us say things we don't mean, when resentment creeps in — not toward each other, but toward a life that is harder than we ever imagined. And yet, through it all, she is the person I need most.

She is the only other person in the world who loves this child the way I do, who feels their pain as deeply as I do, who would give anything to make the world easier for them. And so, even on the hardest days, I hold onto that. I hold onto her.

Because while this journey may break us down at times, I hope — more than anything — that it will also make us stronger. That in the end, we will not just survive this together — we will love more deeply because of it.

So if you've ever felt that loneliness, if you've ever sat in the dark with a broken heart, if you've ever wondered if anyone else knows this pain — you are not alone. And if you've ever been in public, holding your child through their hardest moment, feeling the weight of every stare, every whispered comment, every judgement — you are not alone.

To the strangers who see a child in distress and choose to laugh or judge, I say this: You don't have to understand. Just be kind. Because what you don't see is the strength it takes for these kids to exist in a world that constantly asks them to change.

You don't see the love that holds them together when they are breaking apart. You don't see the parent, sitting beside them, doing everything they can to get through this moment, praying that someone — just one person — will choose compassion over judgement.

So if you see a child struggling, if you see a parent holding on with everything they have, please — don't add to their pain. Don't make their hardest moment even harder. Please, please be kind.

We are only three years into our diagnosis, but to the parent reading this, carrying more than anyone knows — I feel you, I feel your pain. I know how hard this is. I know the heartbreak, the exhaustion, the weight of it all.

But I also know this: Your child is extraordinary. Not despite their differences, but because of them.

They love fiercely. They see the world in ways others never will. They make you laugh more than anyone ever has before. And even in their hardest moments, even when they cannot say it, they feel your love.

They know you are their safe place. You are the most important thing in their world. The one who never stops fighting for them.

To the parents who are still finding their way, still learning how to grieve and love in the same breath, still waking up every day to fight a battle no one else can see—I want you to hear this: You are amazing.

You are so fucking amazing. You are carrying the weight of something most people will never understand. And yet, you are still here. Still loving.

And so together, we keep going. Even when we are exhausted. Even when our hearts are breaking. Even when the world refuses to understand.

We keep going — not just for them, but because of them. Because our children are not broken. They are not something to be fixed.

They are brilliant, and brave, and breathtakingly unique. And when the world sees them the way we do —when it finally catches up to the extraordinary humans they already are —everything will change.

With love,

Hugh

Feature image: Instagram/theimperfectspodcast.