This is an open letter to the parents of autistic and neurodivergent people.
It may be challenging to hear so please take care when listening.
Gender neutral pronouns have been used throughout to protect identities.
All right, so this is a very, very different episode we've got today and I think when like there's been like a handful of times over the years of doing this show where I've had like butterflies and I've been like really nervous, but it's always because I'm going to say something is because like, I'm going to like bring something to the show that I'm nervous about, but I've got the butterflies today, and I'm not saying I'm not saying anything vulnerable at all, but who is.
Yeah. And I don't know how you're feeling, Josh, but I'm I've got the butterflies.
I do. Yeah. And I, knowing a bit about what it's going to be about, I am yeah, I'm extremely nervous and just in awe of you and yeah i don't know if there's much more to say.
Do you want to go for it?
No thank you guys. I'm just going to read something.
I'd like to thank Grace Tame, Sarah Haydon, David Hobbs, Clay Willis and Sam Cavanagh.
Three autistic people and two parents of autistic people who have helped me preparing what I'm about to read.
I'd also like to thank my wife Penny Moody.
So this is our story and I'm sorry in advance if our neurodivergent journey is different to yours you know way that's upsetting.
Three years ago one of our kids was diagnosed autistic.
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.
So this is an open letter to parents of neuro divergent kids.
I know life is unpredictable but I never saw this coming.
I never anticipated that I might one day experience this amount.
And I might one day experience this amount of pain.
I never once thought I'd know such heartache.
This is the hardest thing I've ever known.
I'm sure you all 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's the world. The pain is seeing your child standing on the sidelines confused, distressed, stressed 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 they're feeling a deep sense of 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're crying on the floor or smashing themselves against the wall.
Strangers assuming they're 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're doing it so much tougher.
a recent study at Boston, 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 completely shot to pieces.
I never expected to carry a heart that is so 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.
And we keep fighting.
The pain lies in the deep aching loneliness.
The feeling like no one truly understands how hard this is.
How much you love them.
How much you're trying.
It's the weight of carrying it all.
Every single day. Knowing this is forever.
And always feeling like you're not doing enough for them.
The heartache is seeing the impact on the siblings, they adore them.
They love them, and yet so often they're left hurt and confused.
So often they are the ones who have to wait.
Wait for our attention while we help them through another meltdown.
Wait for planes 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 keep them safe.
And I see it. I see the way they hold back when they want to complain because they know they're struggling.
I see the quiet patience, the sacrifices they don't even realise they're making and it breaks me.
Because while I know they're growing into the most compassionate understanding people.
I also know that sometimes they must feel like they come second and I never want them to feel that way.
I'm a very different person to who I used to be.
I'm very rarely present these days.
I'm always worrying about them feeling distressful.
I can't stop comparing.
I wish I could but I always compare.
I'm always comparing to other families.
I don't sleep anymore.
At best I'm half asleep awaiting the next moment of overwhelm, which can happen at 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 and the exhaustion.
No one prepares you for what this does to your 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 towards each other.
But towards a life that is much harder than we ever imagined and yet through it all, she is the person I need most.
She's 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 on to that, I hold on to her.
Because while this journey may break us down at times, I hope more than anything that will make us stronger.
Then in the end, we will not just survive this together.
We will love more deeply because of it.
So if, 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're not alone.
And if you have ever been in public holding your child through their hardest moment, feeling the weight of every stare, every whispered comment, every judgement, you're not alone.
To the strangers who see a child in distress and choose to laugh or judge, 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're breaking apart.
You don't see the parent sitting beside them, doing everything they can to get through this moment, hoping just one person will choose compassion over judgment.
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're only three years into our diagnosis.
But to the parents listening to 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 a way that no one else ever 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're amazing. You're so fucking amazing.
You are carrying the weight of something most people will never understand And yet, you're still here, still loving.
And so, together, we keep going, even when we're 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're not starting to be fixed.
They're brilliant, and brave, and breathtakingly unique.
And when the world sees them the way that we do, when it finally catches up to the extraordinary humans that I already are, everything will change with love, Hugh.
How can we have a break?
Hi everyone. It's Hugh here.
This has been recorded a few days after I read out that letter.
I just wanted to say something now a few days later, having had a chance to think about about how I feel about it all.
And the main feeling that I have upon reflection is this deep, deep sense of gratitude towards you as the listener and as the supporter of the podcast.
And for that, I just want to say a really, really big thank you.
It has taken three years for me to say anything on this topic for a variety of reasons.
But the one of the reasons I was able to do this is because of you because I just feel like we have the most incredibly loving and supportive audience or listeners.
So whenever whenever we meet anyone, whether it's after a live show or just in a straight with everyone's just so warm and supportive.
So that that sort of allowed me to feel like this is a safe place to do this.
And it probably dawned on you, some of you, as you're listening to that letter that that's all been happening over the last few years whilst we've been doing the podcast and it has been incredibly challenging at times, at times some of the hardest things had to do to go from home to here to do this but one of the main reasons, well, there are two reasons I've been able to do it.
First of all is the incredible team that I work with here that there's no way I'd be able to do the work I do without them.
They have been, every single one of them has been so incredibly supportive and understanding.
But the other reason is actually you guys listening to the podcast at home, the love and support that I feel from you on a daily basis has absolutely got me through and owing me to do the podcast and enabled us to be able to bring these incredible guests to you all.
So I just yeah, I really just wanted to say a very big heartfelt thank you to you all for your love and support.
Because I just, I wouldn't, I quite literally wouldn't be able to do the podcast without it.
So yeah, thank you.
And yeah, I hope if you know someone who is going through something similar to Penny or I, that you're able to forward this onto them, and hopefully to help them to feel less alone.
Or if you are one of the people in the same position as Penny and I, I hope this brought you some kind of I'm sure it was challenging to listen to at times but mainly I hope it helped you to feel a little bit yeah, a little bit less alone so again, thank you for your incredible love and support it means the world.
