March 17, 2025 • 11 mins
It's Neurodiversity Celebration Week and over the weekend Hugh Van Cuylenburg went viral for his open letter on his The Imperfects podcast to parents of neurodivergent children and what the families go through. We caught up with Hugh after the confrontational and moving letter.
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Speaker 1 (00:00):
This is the Fitsy and Whipper with Kate Richie podcast.
Speaker 2 (00:03):
This is an important one because over the weekend, and
it's neuro divergent week too, Hugh Van Carlenberg made a
very very powerful piece to camera from his imperfect podcast Fits.
Speaker 3 (00:13):
Yeah he did. We adore this podcast.
Speaker 4 (00:16):
On this show, they discussed mental health, the challenges that
we all have in life, and being vulnerable and my gosh,
the emotion that I had watching Hugh over the weekend.
He was talking about the struggles that he's faced as
the father.
Speaker 3 (00:31):
Of a neurodivergent child. Have a listen to this.
Speaker 1 (00:34):
Three years ago, one of our kids was diagnosed autistic.
I know life is unpredictable, but I never saw this coming.
I never anticipated that I might one day experience this
amount I might one day experience this amount of pain.
The pain of being a parent to an autistic child
is not the child, it's the world. The pain is
(00:56):
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. And if
you've ever been in public, holding your child through their
hardest moment, feeling the weight of every stare, every whispered comment,
(01:20):
every judgment, 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. But to
the parents listening to this, carrying more than anyone knows,
I feel you, I feel your pain your child. Your
(01:41):
child is extraordinary, not despite their differences, but because of them.
They love fiercely, and even in our 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.
Speaker 4 (02:05):
Hugh vanmen Berg, you welcome to the show. First of all,
from the man that's hit the first six onto the
Prime Minister's.
Speaker 3 (02:13):
House at Kura Billy House.
Speaker 4 (02:15):
You to go from that to hearing what we heard
over the weekend. We appreciate you coming on the show.
It must have been very tough for you leading up
with that, you knowing what you're about to do and
being that vulnerable.
Speaker 5 (02:28):
Yeah, that's the first time I've listened back to it
since I did it. We actually did it probably about
three weeks ago, and now I'm back in that the
same place again. I've never experienced anything like that. It
actually so I had the idea to write that letter
or to do something on the podcast and actually talk
about the struggles of being a parent of a neurodiversion
(02:50):
child in our coast autism and come up with idea
in November, and it quite literally took me two months
to write that because I just wanted to get every
word but to honor that much, want to make sure
I get every word right and every person and parent
who understands his uning, I just really wanted to get
every single word right. So I took way too long
(03:12):
to write it, and then when it came to actually
reading out the studio, I've never felt an emotion like
that before. My hands are shaking for a good half
an hour after it. And I think anyone out there
who is a parent of a neurodiversent child, you don't
give yourself too much time to get You don't cry
that much because you've got to get onto the next challenge.
And I just, for some reason, eight years worth of
(03:33):
tears came out in about half an hour, completely.
Speaker 2 (03:35):
Fun do you know what. What I loved about it too,
you knowing you personally, is that it's something you hadn't shared.
I mean, obviously, this is something you've been dealing with
for a while now and learning to understand and learning
you know, what life is like and how you move
forward with things too, and the adventure that you're going on.
But you'd never spoken publicly about this.
Speaker 5 (03:56):
Yeah, I wanted. It was a couple of things needed
to understand it. My wife and I need to understand
it properly ourselves. We also needed to tell our child
that they were autistic and have them understand it and
then have them be ocaded it. And then I needed
to understand what the autistic community, how they want to
be talked about, and how other parents in the simile position.
(04:20):
So it just took a long time to I didn't
want to the process. I mean some of the stuff
that we go through. I mean, anyone listening in the
car right now who has a child who's on the
spectrum or the adodel, whatever it is, just to acknowledge
the baffle you have been through already that no one
knows about. Just to get out of the door today
now started at four this morning. Kids autistic kids really
(04:40):
struggle sloping. When they wake up, they don't go back
to sleep. Well that's our experience, so getting our child
out of the door on not much sleep was a
bat all this morning. But I remember I did, I did,
it really was. I want people to understand that often
if you see a child who you think is misbehaving,
before you look at the parents in we're the situation.
(05:02):
Last year, we took our child to the football at
the MCG and had to leave about twenty minutes in
because they're having such a big meltdown and there's literally
in the twenty minutes into the game and I was
still out in the front of the stadium at the
MCG about half an hour of the game had finished
two hours later because they were on the floor, they
couldn't move. They were just having the biggest meltdown. It
was too overwhelming for them. And the amount of looks
(05:22):
I got from people. I had one lady you say
it was something like you need to sort that out,
or as if I it's just and you know, I'm
not angry at those people. I just I just want
people to know that, like, this is not a child
misbehaving this is a child who's completely overwhelmed by the world.
And my message in that is like, the next time
(05:42):
you're walking past the child who you think is being naughty,
there's a chance that are being overwhelmed and you just
need to just a kind book to appearances or packs.
Speaker 4 (05:50):
Yeah can I I want to be extremely honest with
you because I've done it myself growing up with my
two boys and watching them play forty I'm getting about
emotional talking about this. Now you're watching you over the weekend, mate,
Is that you really struck a chord with me? Because
there's boys that have played in my in my junior
football team who sit in the back pocket and they
(06:12):
don't want to.
Speaker 3 (06:12):
Go near the ball. And I remember saying comments to
my wife going, what the hell is that kid doing?
Speaker 4 (06:19):
You really struck a chord with me, because now I'm like,
You've really got to sit back and think about what
you're saying here.
Speaker 3 (06:25):
You don't know what the kid's going through. I don't
know what their parents are going through.
Speaker 4 (06:29):
I've got no idea but for me to judge that
kid because he doesn't want to go near the ball.
I just felt really bad about some of the perceptions
that I've had of kids over the years and going
through junior football. It's a real eye opener for all parents,
even if your child is not neuro divergent, not at all,
you need to.
Speaker 3 (06:50):
Be the one that needs to make the changes here.
Speaker 5 (06:53):
Thanks to Siah, that's a I mean, just hearing that
is so, that's just a beautiful thank you for that,
because like I mean, I was Kickstreak Guide. Example, we
took I was kicking and that was I was so
excited to do that, but it lasted five minutes and
then it was they had a big meltdown but didn't
want to go to stay there and just I could
see pants, dang, what do you like? What is wrong
(07:16):
with just so the looks were just so heartbreaking. I
just so, yeah, I appreciate it if you think that, Hugh,
what what.
Speaker 2 (07:23):
I think is a really important message here, because you know,
I have some friends, including yourself, with this situation and challenge,
and one friend in particular, I think, and I've shared
this story with you, they sent their little man to
one school and the school said there's not much we
can do here for a child like yours. And then
(07:45):
they went to another school that completely embraced the difference,
completely understood the situation and made him the star of
the show and as comfortable as possible. And I think
you know you've shared a similar story also, But I
think what's so important is for the teachers and schools
to understand also what these kids might be going.
Speaker 3 (08:07):
To and how you can welcome and celebrate the difference.
Speaker 5 (08:11):
Yeah, I think I mean a's a We've had a
very very similar journey with our educational pathway for our
child in that one place kind of said yeah, we
do it well, but didn't really listen to what we
were suggesting. Send them to another place who they had
a teacher waiting out the front and for them, and
(08:32):
it turned up and who would literally celebrate when they
turned up every day and just say, I cannot believe
how lucky we are to have you at our school.
Just saying stuff like that all the time. It really
loved and really accepted, and the difference in them was
it was life changing for all of us. But I
think when I think teachers have the toughest job in
the world, I think they're highly empathetic people. I just
(08:54):
think all of us have to remember that a child
on the spectrum a child ADHD. What they the struggles
that they go through, the battles they fight, and the
complexities of just getting out the door every day and
actually getting to a place like that where there's so
much uncertainty, and it's I just find my child as
(09:17):
my hero because I to get to school every day.
Is they're doing something hard and I've ever done in
my entire life. They do it every single day, and
we have to remember how hard it is for those
people and just to treat and live patience and love
and care and kindness.
Speaker 3 (09:34):
You are a beautiful man.
Speaker 4 (09:35):
You can we please talk about the six that you
hit on the Prime Minister's house.
Speaker 5 (09:40):
Because you actually thought that was an interview today. I
thought I thought we were talking about.
Speaker 2 (09:46):
Mention them Perfect podcast.
Speaker 3 (09:47):
Have you written an open letter to the Prime Minister
bagging the ball back?
Speaker 5 (09:52):
Just an open to the room?
Speaker 3 (09:55):
I think who bold it to you? You because they
were feeling a bit down afterwards?
Speaker 5 (10:01):
Was overpitched and.
Speaker 3 (10:09):
The kangaroo should never bowl to a professional cricketer.
Speaker 4 (10:13):
Or if you haven't listened to the Imperfect Podcast before,
introduced yourself to it, because it does and and for
any parent out there, it's I mean, this is a
beautiful episode here. We really appreciate your honesty, Mating, coming
on the show and opening up about this because, like
I said, even if you're not a parent of a
(10:35):
neurodivergent child, anyone around you, I think this affects you
as well and the way that you should approach, you know,
children in this situation or anyone even in the workplace
or wherever you are.
Speaker 3 (10:47):
So Hugh, we really appreciate your honesty, mate.
Speaker 5 (10:51):
I really appreciate amyon boys. Love you both and yeah,
you're beautiful mate.
Speaker 3 (10:56):
Thank you so much. Kate Ritchie is a not Over
podcas to walk great shows like this. Download the Nova
Player via the App Store or Google Play.
Speaker 5 (11:05):
The Nova Player
This is the Fitsy and Whipper with Kate Richie podcast.
Speaker 2 (00:03):
This is an important one because over the weekend, and
it's neuro divergent week too, Hugh Van Carlenberg made a
very very powerful piece to camera from his imperfect podcast Fits.
Speaker 3 (00:13):
Yeah he did. We adore this podcast.
Speaker 4 (00:16):
On this show, they discussed mental health, the challenges that
we all have in life, and being vulnerable and my gosh,
the emotion that I had watching Hugh over the weekend.
He was talking about the struggles that he's faced as
the father.
Speaker 3 (00:31):
Of a neurodivergent child. Have a listen to this.
Speaker 1 (00:34):
Three years ago, one of our kids was diagnosed autistic.
I know life is unpredictable, but I never saw this coming.
I never anticipated that I might one day experience this
amount I might one day experience this amount of pain.
The pain of being a parent to an autistic child
is not the child, it's the world. The pain is
(00:56):
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. And if
you've ever been in public, holding your child through their
hardest moment, feeling the weight of every stare, every whispered comment,
(01:20):
every judgment, 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. But to
the parents listening to this, carrying more than anyone knows,
I feel you, I feel your pain your child. Your
(01:41):
child is extraordinary, not despite their differences, but because of them.
They love fiercely, and even in our 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.
Speaker 4 (02:05):
Hugh vanmen Berg, you welcome to the show. First of all,
from the man that's hit the first six onto the
Prime Minister's.
Speaker 3 (02:13):
House at Kura Billy House.
Speaker 4 (02:15):
You to go from that to hearing what we heard
over the weekend. We appreciate you coming on the show.
It must have been very tough for you leading up
with that, you knowing what you're about to do and
being that vulnerable.
Speaker 5 (02:28):
Yeah, that's the first time I've listened back to it
since I did it. We actually did it probably about
three weeks ago, and now I'm back in that the
same place again. I've never experienced anything like that. It
actually so I had the idea to write that letter
or to do something on the podcast and actually talk
about the struggles of being a parent of a neurodiversion
(02:50):
child in our coast autism and come up with idea
in November, and it quite literally took me two months
to write that because I just wanted to get every
word but to honor that much, want to make sure
I get every word right and every person and parent
who understands his uning, I just really wanted to get
every single word right. So I took way too long
(03:12):
to write it, and then when it came to actually
reading out the studio, I've never felt an emotion like
that before. My hands are shaking for a good half
an hour after it. And I think anyone out there
who is a parent of a neurodiversent child, you don't
give yourself too much time to get You don't cry
that much because you've got to get onto the next challenge.
And I just, for some reason, eight years worth of
(03:33):
tears came out in about half an hour, completely.
Speaker 2 (03:35):
Fun do you know what. What I loved about it too,
you knowing you personally, is that it's something you hadn't shared.
I mean, obviously, this is something you've been dealing with
for a while now and learning to understand and learning
you know, what life is like and how you move
forward with things too, and the adventure that you're going on.
But you'd never spoken publicly about this.
Speaker 5 (03:56):
Yeah, I wanted. It was a couple of things needed
to understand it. My wife and I need to understand
it properly ourselves. We also needed to tell our child
that they were autistic and have them understand it and
then have them be ocaded it. And then I needed
to understand what the autistic community, how they want to
be talked about, and how other parents in the simile position.
(04:20):
So it just took a long time to I didn't
want to the process. I mean some of the stuff
that we go through. I mean, anyone listening in the
car right now who has a child who's on the
spectrum or the adodel, whatever it is, just to acknowledge
the baffle you have been through already that no one
knows about. Just to get out of the door today
now started at four this morning. Kids autistic kids really
(04:40):
struggle sloping. When they wake up, they don't go back
to sleep. Well that's our experience, so getting our child
out of the door on not much sleep was a
bat all this morning. But I remember I did, I did,
it really was. I want people to understand that often
if you see a child who you think is misbehaving,
before you look at the parents in we're the situation.
(05:02):
Last year, we took our child to the football at
the MCG and had to leave about twenty minutes in
because they're having such a big meltdown and there's literally
in the twenty minutes into the game and I was
still out in the front of the stadium at the
MCG about half an hour of the game had finished
two hours later because they were on the floor, they
couldn't move. They were just having the biggest meltdown. It
was too overwhelming for them. And the amount of looks
(05:22):
I got from people. I had one lady you say
it was something like you need to sort that out,
or as if I it's just and you know, I'm
not angry at those people. I just I just want
people to know that, like, this is not a child
misbehaving this is a child who's completely overwhelmed by the world.
And my message in that is like, the next time
(05:42):
you're walking past the child who you think is being naughty,
there's a chance that are being overwhelmed and you just
need to just a kind book to appearances or packs.
Speaker 4 (05:50):
Yeah can I I want to be extremely honest with
you because I've done it myself growing up with my
two boys and watching them play forty I'm getting about
emotional talking about this. Now you're watching you over the weekend, mate,
Is that you really struck a chord with me? Because
there's boys that have played in my in my junior
football team who sit in the back pocket and they
(06:12):
don't want to.
Speaker 3 (06:12):
Go near the ball. And I remember saying comments to
my wife going, what the hell is that kid doing?
Speaker 4 (06:19):
You really struck a chord with me, because now I'm like,
You've really got to sit back and think about what
you're saying here.
Speaker 3 (06:25):
You don't know what the kid's going through. I don't
know what their parents are going through.
Speaker 4 (06:29):
I've got no idea but for me to judge that
kid because he doesn't want to go near the ball.
I just felt really bad about some of the perceptions
that I've had of kids over the years and going
through junior football. It's a real eye opener for all parents,
even if your child is not neuro divergent, not at all,
you need to.
Speaker 3 (06:50):
Be the one that needs to make the changes here.
Speaker 5 (06:53):
Thanks to Siah, that's a I mean, just hearing that
is so, that's just a beautiful thank you for that,
because like I mean, I was Kickstreak Guide. Example, we
took I was kicking and that was I was so
excited to do that, but it lasted five minutes and
then it was they had a big meltdown but didn't
want to go to stay there and just I could
see pants, dang, what do you like? What is wrong
(07:16):
with just so the looks were just so heartbreaking. I
just so, yeah, I appreciate it if you think that, Hugh,
what what.
Speaker 2 (07:23):
I think is a really important message here, because you know,
I have some friends, including yourself, with this situation and challenge,
and one friend in particular, I think, and I've shared
this story with you, they sent their little man to
one school and the school said there's not much we
can do here for a child like yours. And then
(07:45):
they went to another school that completely embraced the difference,
completely understood the situation and made him the star of
the show and as comfortable as possible. And I think
you know you've shared a similar story also, But I
think what's so important is for the teachers and schools
to understand also what these kids might be going.
Speaker 3 (08:07):
To and how you can welcome and celebrate the difference.
Speaker 5 (08:11):
Yeah, I think I mean a's a We've had a
very very similar journey with our educational pathway for our
child in that one place kind of said yeah, we
do it well, but didn't really listen to what we
were suggesting. Send them to another place who they had
a teacher waiting out the front and for them, and
(08:32):
it turned up and who would literally celebrate when they
turned up every day and just say, I cannot believe
how lucky we are to have you at our school.
Just saying stuff like that all the time. It really
loved and really accepted, and the difference in them was
it was life changing for all of us. But I
think when I think teachers have the toughest job in
the world, I think they're highly empathetic people. I just
(08:54):
think all of us have to remember that a child
on the spectrum a child ADHD. What they the struggles
that they go through, the battles they fight, and the
complexities of just getting out the door every day and
actually getting to a place like that where there's so
much uncertainty, and it's I just find my child as
(09:17):
my hero because I to get to school every day.
Is they're doing something hard and I've ever done in
my entire life. They do it every single day, and
we have to remember how hard it is for those
people and just to treat and live patience and love
and care and kindness.
Speaker 3 (09:34):
You are a beautiful man.
Speaker 4 (09:35):
You can we please talk about the six that you
hit on the Prime Minister's house.
Speaker 5 (09:40):
Because you actually thought that was an interview today. I
thought I thought we were talking about.
Speaker 2 (09:46):
Mention them Perfect podcast.
Speaker 3 (09:47):
Have you written an open letter to the Prime Minister
bagging the ball back?
Speaker 5 (09:52):
Just an open to the room?
Speaker 3 (09:55):
I think who bold it to you? You because they
were feeling a bit down afterwards?
Speaker 5 (10:01):
Was overpitched and.
Speaker 3 (10:09):
The kangaroo should never bowl to a professional cricketer.
Speaker 4 (10:13):
Or if you haven't listened to the Imperfect Podcast before,
introduced yourself to it, because it does and and for
any parent out there, it's I mean, this is a
beautiful episode here. We really appreciate your honesty, Mating, coming
on the show and opening up about this because, like
I said, even if you're not a parent of a
(10:35):
neurodivergent child, anyone around you, I think this affects you
as well and the way that you should approach, you know,
children in this situation or anyone even in the workplace
or wherever you are.
Speaker 3 (10:47):
So Hugh, we really appreciate your honesty, mate.
Speaker 5 (10:51):
I really appreciate amyon boys. Love you both and yeah,
you're beautiful mate.
Speaker 3 (10:56):
Thank you so much. Kate Ritchie is a not Over
podcas to walk great shows like this. Download the Nova
Player via the App Store or Google Play.
Speaker 5 (11:05):
The Nova Player
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