Hello, mate, hello again. How are you?
I'm really good just. Checking on recording.
Are we? I am, yeah.
It's good stuff. Good start.
How are you doing? I'm alright mate.
I'm alright. Yeah.
Pretty pretty chill week actually.
It's been really good, isn't? It yeah, it's been good.
Quite before the storm. Yes, week left till, well, not
even a week. It was a week yesterday, a week
yesterday instead this time. I lose all my toenails.
Yeah, this time next week we'll be in clip.
We'll be hanging. Be hanging, wouldn't be able to
walk, wouldn't be able to navigate stairs.
Did you book the Monday off work?
Yes, Oh yes, yes, booked off. Absolutely.
London Marathon, here we come. Yeah, full of excitement.
I am, I am between, I'm in two minds.
I'm excited for the atmosphere and stuff.
Because people have said like it's just like something you've
never experienced before and they never experienced a game
because there's no guarantee you get to do it more than once.
Then why would you? You know, what do you want to
do? Because you don't apply, you're
selfish. Individual.
Let somebody else do it. But yeah, it's yeah, I'm really
looking forward to that. I am.
I'm genuinely scared. I am absolutely bricking it.
I'm absolutely bricking it. Training has been non existent.
Yeah. So yeah, really, really not
looking forward to it. Conceiting your face?
Absolutely. I'm getting some motivational
videos as well of going over Tower Bridge and what an amazing
feeling it is and I'm just like Nah at.
What point is Tower Bridge do the run?
I think it's halfway, isn't it? Just before halfway.
OK. So you kind of appreciate it.
Yeah, I think so, yeah. Because if anything like that
towards the end, I'm not sure I'm going to take it in.
I won't. Take anything in towards the
end, I know what I'll be doing. I'll be keep.
I'll just keep looking at my watch like that.
Yeah. How do you mean only 30 seconds
has passed? I'm going to be asking you
because I've got this woop thing.
It hasn't got a screen on it. Yeah.
So I'm not going to unless you keep getting my phone out.
I'm not be able to like track my pace or anything like that.
I'm just because I had an Apple Watch when we did the.
Paris Honestly, I wouldn't worry.
I'm going to take so long. When it gets dark, we'll know.
We're near the end. Just follow the sun.
We'll be absolutely. Fine.
As it's going down, yeah. Have you had anything up this
week? Anything in particular?
No, nothing. Nothing.
Well, I say nothing major. Lydia had her for a swimming
lesson on Saturday. I was going to say she took to
it like a duck to water and she did.
She was really good. First time we've taken her to a
proper swimming lesson. She's obviously 5 now, so
excited when she saw the water, which I was in two minds about
going. Is that a good thing or a bad
thing that she's got excited when she saw the water?
But yeah, got in there full of confidence, just enjoying the
experience. What else you do, getting a head
in the water? Apparently she breathes her nose
on the water like a proper swimmer should do already.
So I was like, yeah, OK, that sounds good.
And then, yeah, just really good at kind of lying on her back,
kicking her feet and then switching on her fronts.
And. Yeah, getting her head
underwater, No Fear about that side of things.
So part of me is like, yeah, this is really good that she's
got No Fear. Then the other part kicks in.
She's autistic. Yeah, she's got No Fear of
water. Anytime she sees a lake.
Yeah, she's just straight into it.
So no, really good, really pleased.
Great, great experience. So yeah, obviously I'm in the
pool with her as well. So you get to share that that.
Experience. Yeah, absolutely.
So no, it was, it was fantastic. Really.
Good, that's good.
I need to we need to take Thomas swimming again.
I think last time we took him was like just a swimming baths
and took him down the flume. I was surprised actually.
I remember thinking, I love that flume, but they don't let people
go down in pairs in this pool. They were like, like, I was like
my little lad's autistic, can I go down with him?
Like, yeah, yeah, whatever. Do what you want.
I meant so it was great. It was like it was a swimming
baths in the Outback of Shropshire.
So maybe they didn't follow all the rules like they supposed to.
Everywhere else but. It was meant and he loved it.
But like, as far as actual lessons or anything, no, I've
not done anything like that with him but probably should.
Oh Oh yeah, for the first time ever I studying human faeces,
didn't I? I sent that little picture in
the in. The group, yes, Congratulations.
Thank you for breaking your duck.
That's it. Thank you very much.
I was quite proud of that one. Human faeces.
Human faeces stood in it in the bathroom.
Oh. Amazing.
Awesome. Thanks, Thomas.
When you've had it rubbed in your mouth, then you've locked
another level. I've not quite got to the dizzy.
Heights of that here it's a good level.
It's a good level to achieve. You know your life is going in
the right direction when that. Happens.
I was walking, walked in the bathroom, but I was like,
because it's just an unusual thing to feel under your foot in
the bathroom. I was like, what's that?
And I just took my shift straight away and I'm like that
shit, great. Awesome, awesome, awesome.
So yeah, there was that. So we we put some questions
there. We did to the community, Yep,
once they aimed at dads, once they aimed at mums.
So we've got some questions to go through.
Thanks guys. You, you really went, especially
the mums went all in to ask some questions.
So there's quite a few. So you just crack on.
Yeah, let's, let's do it crack. On go in question one this is so
these are these are from dad. The first seven are from dads.
How did you feel when you got the diagnosis for your children?
Suspected 3 years became official Thursday hit me like a
train. Currently feeling numb,
relieved, guilt, anxious all at the same time, and me and you're
at pretty different ends of the spectrum.
Yeah, for me, I kind of said it previously, it was very much
just a box ticking exercise, a rubber stamp in, if you will, of
the autism. It was fairly clear that she was
autistic. Obviously when you see the
paediatrician, they're like can't officially say, but the
signs are there. And then just knowing your child
compared to other children, it became very obvious.
So when we got the results, it was.
Yeah. And your, your results, actually
you got them relatively recently.
We were doing the podcast when it came in because I remember
asking you about. Yeah, yeah, yeah.
So because what June maybe? June last year, something like
that. Yeah, something like that.
She got her place at a specialist school.
We did the assessment, then got the phone call or the Zoom call
at the time, and it was just, yeah, as expected, you know,
autistic. I was just very much like, yeah,
10 minute call at the end of it, so you put the kettle on you.
You've been through the like you said here, like numb, relieved,
which obviously that's that weird, the weird feeling.
Guilt. That's an interesting one.
Anxious. Totally get that anxious about
the future. I mean, for me it was relieved
for sure. Guilt.
Do you know what if if there was any guilt, admittedly, what we
did cross our minds. Is this something?
Was this a vaccine? Like, was this mish?
Was like, is it, was it my diet when I was pregnant?
Was it, was it the things I was eating or not eating while I
was? Did I take certain medication?
Aspirin? Yeah.
Tylenol. Did I take Tylenol?
So there's stuff like that. But the the COVID vaccine, COVID
vaccine COVID side of things, yeah.
Yeah, it would have been around the same time.
Yeah, I think. So I think the anxiety comes
with, again, that future. Yeah.
How? How autistic are they going to
be the. Guilt thing is like it's because
you can't get any answers. There's no definite or defining
moment that says that is the precursor to autism.
Yeah, I think that maybe is the guilt is that you can't you
can't label where it's come from.
No. And then nobody can be thinks
like do you actually want to know is it going to change
that's the other one or if if it comes out and it it's very much
like, oh, actually it's from this particular parent.
Yeah. Do you want to know or is is
that going to lead to things in the future?
You may not say anything, but in those dark moments, are you
suddenly going to go this can life we've got now is down to.
Yeah, and even if even if it was a vaccine, even if it was a
vaccine or medication, let's say for argument's sake they that it
was vaccines and it was proven it was vaccines, I wouldn't want
to know. I get that future parents would
need to know. I wouldn't want to know because
that means, again, this is just a theoretical like, you know, if
I'd sat down with my kid on my lap and let someone jab them
with something, I wouldn't want to know if that because it's
done right. He's got autism.
It is what it is. The other thing is as well, I
think with me, there'd be periods where I would get really
annoyed and pissed off at pharmaceuticals, doctors,
everyone else like that in the sense of you've caused this and
I don't have enough energy to focus on being pissed off at a
large pharmaceutical company when I've got to invest all my
energy in normal life. Pfizer you.
Get yeah or, you know, or, or trying to do the best you can
for your child whilst also trying to do as well as you can
in your career, your jobs, after, you know, have
relationships, go have, you know, all these sort of things
that you're supposed to do as a normal adult.
You know, I just don't know if I could go down that that side of
things, but. Yeah, it's a mix of all those
emotions, all of this, Yeah. Feeling feeling numb.
The only, the only thing I felt numb about wasn't the actual
diagnosis as such. It was it's you finally get that
call and they go, right. Confirmed autism.
Thanks very much. See you later.
That's the bit that I found maybe a little bit numbing is
that. Oh, nothing has changed, has it?
We've got the diagnosis now and we've already got kind of EHCPS
and everything else like that. There's nothing else that comes
through now where you go? Yeah, it is confirmed.
We can now do this to fix help. It's just.
Yeah. Confirmed.
And I don't know with this, I guess it kind of depends on the
how profound the autism is displaying.
So imagine if it was like, like he said, suspected for three
years. If it isn't that obvious, I
imagine it. If you've always got it in your
mind that this might not be autism, then when you get the
diagnosis I imagine that does hit you harder then.
Like for for me for example, I was so sure it was autism that
it didn't surprise me when we got the.
You would have been more shocked if they said it's not.
Absolutely. And a lot of the stuff he said
here, a lot of these emotions I'd been through, I'd kind of
been through them all. Yeah, like, like with Lydia, we
knew for yeah, 3 plus years that that was autistic.
We just had to go through the mill.
Yeah, and your diagnosis actually came a little bit later
than you were expecting, didn't. It yeah, COVID knock on.
So even though it was 2025, we got the official diagnosis for
for Lydia, I think it was supposed to take place in 2024.
She was born in 2021. But various delays, more
children being assessed everything else I said the
waiting list got longer and longer.
So I think we will kind of push back a couple of times and just
explain that it's going to take longer than anticipated and to
get it do. You want the next one.
Yeah, next one. So this is a gentleman who's 40
son age 7. As a man with an autistic child,
I feel we live in silence. I agree, sometimes it's best not
showing weakness as it can make things worse.
At the same time working and taking care of your children and
family can create burnout and people just don't see it.
How would you deal with this? Well, I don't agree with the
first bit or the second bit. I agree sometimes it's best not
to show weakness as it can make things worse.
I think that is actually the problem.
I think everyone is so trying so hard, especially as men not to
show weak. And I don't think it's weakness.
I think vulnerability might be what he's kind of saying there
because there's nothing you're not showing weakness.
I think by by fighting against showing vulnerability, that's
where things get stacked up. That's when mums end up dealing
with stuff on their own is because men think, well I can't
show how I really feel about this.
And men sometimes do that because they don't want to.
They've offload. You don't want to offload on
your partner. Yeah.
Like if, oh, my God, if she's got enough on her plate worrying
about our children or our child, last thing she needs to worry
about is me. So I'll just be stiff up a lip,
crack on, go to work, come back, do what I need to do.
Yeah. But repeat.
But the problem with that is, although that's what you think
you're doing, you think you're not offloading in the moment and
that's going to make everything fine.
But what's actually happening is internally your stress levels
are going through the roof and your partner is feeling it and
seeing it, and that's actually making things worse and harder
for. It and we need to have like
mates that you can offload to like we talked about last week.
We hold it in a bit more. Yeah, you're a pressure cooker.
So I would deal with it by showing vulnerability to your
partner, share how you feel, get it out there very quickly.
See that you're not going to get judged by your partner.
Absolutely not. All she's going to do is try and
help you through it. And in turn, you're helping her
because you're actually addressing how you're feeling.
But you've got to go through that process.
You've got to go through it. I think we've all been.
I need to keep this to myself and just crack on, otherwise,
yeah, I may have a bit of a meltdown.
Yeah, and I think we've all been guilty of it, but that's 100% my
learnings at the other end of it are show vulnerability, share
your feelings. But you.
You. Yeah, if you.
Join the Discord and share it with us.
Absolutely. But at the same time, yeah, if,
if you'll, you know, you're sleep deprived, you're still
getting up, you're still expected to perform at work.
You go there. Yeah.
You come back. There's no respite unless the
only respite you get is if you drop that text.
Do you need anything from Tesco on the way home to see you can
have 15 minutes walking around before to to kind of so like.
Decompression. Decompress before you you step
into another kind of, I'm going to say war zone, but you know
what I mean in terms of the the stress and everything else like
that. Well, I say you've.
Probably got a partner that's been with a child all day.
Yeah. I say when people join the
Discord of the Facebook group, I say like, welcome to the Mad
House because that's what it's like.
It's it's like a war zone. And people don't see it, you're
quite unless you're physically living this life.
Like you can have mates that are so empathetic and I've had
friends going off. We can do anything.
You let us know. Yeah.
It's unfortunately you probably
can't. No, you probably can't.
In the best will of the world. It's appreciated, but you
probably can't. And the like, the other thing
here, like obviously, you know, I'm assuming, like he said, we'd
work and, and burn out and stuff like that.
The other thing that I think is easy to forget is let's say in
a, in a traditional setup, because one of the parents maybe
can't work because someone needs to be there for the, for the kid
to send them off to school and to get them back from school and
stuff like that. When a man is at work all day,
yes, they've got the break from the very difficult situation at
home, they've got a break from that, but they are still for 8
hours a day answering to someone else and having to do things on
time, respond to clients. Like it's not like they're
chilling out. You have got a structure at work
and you have got things and protocols you have to follow and
you are answering to someone all day.
So I get it. I get that feeling of needing a
little bit of space and worrying about burn out.
But again, if you don't show kind of vulnerability with your
partner, like it's more likely that burnout's going to happen
and that you are going to pop at some point.
Yeah, it's a classic. You you do have to try and talk
to somebody, yeah. And if not, I mean, I know I was
joking before, but if if not, like join, join one of our
groups or any other so many groups on Facebook.
Join these groups and just talk to other people, talk to other
dads, even talk to other mums. That's been quite good to see is
where men are coming in, talking to women and the women are
advising the men on what their wife might be thinking and
feeling and that kind of changes the perspective for them a bit.
Yeah, especially in the early years, it's extremely.
Difficult. Extremely difficult.
Everyone's still trying to settle in.
And then you'd want to try and find a bit of a rhythm.
And it's, we've said this to like mums and dads, it's, it's
if you can just find that one thing, you know, if it's once a
week, a couple of times a week, that you're able just to do
something for you, whether, you know, a lot of guys will go, oh,
you know, just get yourself in the gym.
Yeah, if that's your thing, Get yourself in the gym.
Take 45 minutes to yourself a couple of nights a week if you
can, or early mornings if you get the chance.
Fishing, football on a Sunday, whatever your thing is.
Whatever your thing is, yeah. And the same for the mums.
You know, it can be absolutely anything, you know, just
something for yourself. And that that is important.
Isn't it the same just for the dads?
The mums also need one as. Well, your entire existence is
SEM parent, your identity is SEM parent, everything else like
that. And sometimes the early, the
early days, you feel like you're losing yourself as well.
And then you start looking at the future, going this is my
life. Now is it?
And then you just go, once you start having those negative
thoughts, you know, you start, your brain will just go bang,
bang, bang. It'll take you all the way down.
Yeah, 100% right. Next one question three.
What's the golden hope you have as adulthood?
What's the golden hope you have as adult?
Hood and possible social care supports kick in from any
support provider. Golden hope, Oh.
My God, you could. Tell we haven't read these
before, haven't you Golden Hope you have as adulthood and.
I mean, the golden one would be the.
Social Care. Lydia would be able to live.
Like independent living kind of things.
Some sort of independent assisted living, have a quality
of life, an understanding of the environment and I suppose more
most importantly, not to keep harping back to that what
happens when we're not here, but it's just surrounded by people
that love and genuinely care for her, I think is the absolute
golden hope that I can have and that the social care provided is
matches that. Yeah, again, like we, like you
think about some form of independent living.
Like I can't fathom that. But again, Thomas is 6.
Yeah. Do you know what I mean?
Yeah, to be fair, most 6 year olds you look, how are you going
to survive? Six, You know, and I always harp
on about not underestimating your kids.
Like, we have no idea what they're going to be like by the
time it comes to some potential independent living.
And these kids, they really do surprise their parents a lot of
the time, don't they? Again, we see it on that, you
know, love on the spectrum. Yeah.
And some of the parents get interviewed and they talk about,
like, their kids when they were younger, and they're absolutely
blown away. Yeah.
Non verbals. Suddenly you.
Know communicating? Yeah.
Non-stop talking. So yeah, you never know what's
going to happen, but that mate, that's perfect.
Yeah, that's perfect. Excellent.
OK, another question, more of a philosophical question.
Lower expectations is often endemic for the view of
children, adults with autism. How can we overcome this?
This to view, see, build and apply better everything for this
wonderful community. So yeah, how do we overcome low
expectations for these children? Yeah, we've talked about lows,
haven't we? Like you have low expectations
because it's almost a defence mechanism, don't you?
Because you you think your kids autistic and then you have all
these ideas, ideas of what this means.
You don't know how huge the spectrum is.
So again, you get all these stereotypical ideas of Rain Man.
I know I always use an actual example.
That's because the only one that's kind of the main one
everybody used to consider when they thought about autism,
wasn't it? So yeah, I think low, low
expectations are endemic, but. You don't have to look around
for long and you can very quickly see that a lot of these
kids, they absolutely blow people away with what they're
capable of doing. I think as a parent, you can be
guilty of this as well, can't you?
You can. I think I, I did in the early
days is when it became more obvious that Lydia was or he's
autistic. You start sort of having that,
that level that you think they will achieve.
And then I brought it down a notch going, OK, she's non
verbal, but maybe she'll speak in the future.
Then, you know, as as time went on, I was like, OK, she might
never be verbal. So I keep lowering the bar,
lowering the bar and that's more kind of self preservation,
trying to check my expectations so I don't start getting upsets
or, you know, over emotional about what the future is going
to be like for her. But then as you say, you set it
low and then all of a sudden they do something crazy.
You're like, wow, OK. But then the risk is that you
set the bar so low that sometimes you can be complacent,
that you think, OK, well, I don't need to do this because
they're never going to pick it up.
They're never going to. Get it?
But it's the wrong mindset because as we know, they are
sponges. And I think like where we said
low expectations are endemic on the view of of children and
adults with ASD. I actually think for for people
that know nothing about ASD, the expectations are actually quite
high. They assume that these kids are
capable. They're.
Going to be a mass genius. Like if so many things or when
someone says autistic, they just think, oh, that means you're a
little bit quirky. You're a.
Little bit quirky, but you're going to be really good at
science and maths and coding and everything else like that.
I think as far as they're low expectations, it's us as parents
that that have that for the most.
Yeah, and we've seen it recently again with kind of the media and
some of the posts that have been going up during the white paper
that the the expectations are that these children are just
going to suck the money out of hard working families and
everything else like that. So yeah, I think it needs a
change of mindset of everybody. It does.
More awareness it does from
neurotypical. And and that's government,
that's parents as well as the, the, the wider society.
And again, like, if if you have low expectations, you don't push
your kids. Yeah, you don't.
You don't push them. And and that's kind of where
Thomas's surprise me is. We didn't push him.
And then as soon as we did, he was like, oh, I can do that.
And we were like, oh, shit, OK, what else can you do?
Right. We missed one earlier.
Yeah, I'll let you do that one. There appears more done and
known about mums. They could be labelled as
difficult or intense. Why do you think dads are left
behind in the sphere of involvement and knowledge?
What? So is he saying that mums are
labelled as mums are labelled as difficult or intense?
Yeah, I I can understand that. Maybe mums are doing.
Yeah, I I can see that. They're labelled as difficult or
intense. He's not saying they are
difficult or intense, he's just saying they're labelled that
way. Maybe that's because mums are
doing, especially early on, the vast majority of this work.
So they're the ones taking on the burden of a lot of this
because a lot of dads, I'm sorry, but that is the, that's
just the way it is, guys. We, we are fucking idiots.
They're taking on the burden for a lot of this.
So they're taking a lot of the workload.
And yeah, do you know what? If I was carrying all of the
workload, I'd probably be difficult and I'd definitely be
a bit intense. Yeah, you you know how fiercely
mums will fight for their. Children.
Lionesses. Do you know, and, And again,
this could be the case and it's it's not meant to come across as
a sexist comment or anything else.
Oh, here we. Go Oh God, what's he going to
say? Mums are the ones that go on
maternity leave and then if they've had a job, they are
sometimes more likely to go. I'm going to come back as
reduced hours. I'm going to be more of a
caregiver at home. Dad's going to go. 9 times out
of 10, I'm going to carry on working because we don't have
the luxury of just both of us go in, we're never going to work.
It's absolutely fine. At the end of the day, everyone
tries to work their absolute asses off.
She's got no choice. But you know, probably
traditionally or whatever, mums are the caregivers in that
sense. Mums then are the ones going
right. I need to look at this.
I'm noticing things with my child.
I need to contact the GPI, need to go follow this paper trail.
I need to answer this. I've got to look at nursery
schools. So mum's become taking on that
role of absolute lioness, as you said, going right.
We need to figure this out. Yeah, us dads are going.
All right. I'll be back at about 536.
Let us know what's going on. Yeah.
It's like, do you need me to do anything?
Yeah. And then we'll try and get the
little one down, have some food and then I I better get my head
down because we've got work in the morning.
So mums are probably doing the vast majority, I'd say probably,
yeah, they are doing the vast majority of, of, of this work
here. And dads are kind of like,
right, how do I get involved now?
And we probably get involved when the mums had enough and
it's just reached their wits end and gone.
Oh, can you sort this out or, or dads go And I've been guilty of
this, Yeah. Let me know if you want me to
run my eye over it or something along those lines there.
It's like even with like typical kids, it's like when dad's dad's
are like babysitting and everyone goes on social media
like, oh look, you're amazing. You're looking after the kid and
it's like it's fucking his kid. What are you?
All about all the meme where at Christmas when the kids opens up
the present and it's the first time their dad's seen it as
well. He's like trying not to look.
Yeah, trying not to look surprised.
But again, you know, hopefully hasn't.
It's been taken in a sense it was not as a.
Sexual. No, I'm sure it was mate.
It is, you know, mums are doing the vast majority of that early
work. So yeah, dads do get left
behind. But there comes a point where I
think for me personally as well, once I got myself out of that
limbo stage of like, is she, isn't she?
You know, all the self pity, everything else like that.
I've become very pragmatic and gone do you know what?
It's your kid. You got to fucking fight for
them and do what you can, get them the help they need or the
support. Then you come a bit more, right.
OK, where are we? Up to everything else like that
Or you're the person that goes right.
You need to put the size elevens on and and contact somebody.
Yeah, I'm happy to do that, whatever the case may be.
So it could be one of those. So yeah, I mean, like he said,
why Dad left beyond in this fear of involvement, I kind of think
a lot of that is on us. Yeah, I think so.
The information, the the same information is out there for
mums and dads. It is not behind some sort of
paywall that only mums have access to.
We all have access to it. Lydia's mum very, very good at
sending me reels, information directing me to stuff.
Autism related. Autism related?
Yeah, absolutely. What's?
This funny video. But all the all the autism
stuff, you know, look at this, read this.
And then there'd be times where I just so overloaded.
I'd just be like, I haven't got time to look at a 32nd clip.
And it's obviously the mum going look, you need to look at this.
I want you to be part of this or I'm struggling and you know, Oh
no, I can't look at that. But at some point you just a
switch goes and you're just very much like, right, I need to do
something about this. And the vast majority of dads
we've met I think now are very much involved.
Well, we look at the dad's, the dad's WhatsApp group.
We've what's the youngest kid in there?
Is it? Is it Lydia I?
Think it might be Lydia, Yeah. Lydia at five.
Yeah. And the kids then range up to 11
years old, everything in between.
All those dads, once they've reached that age, are like,
they're almost like subjects experts to a certain degree on
their kids and what's going on in their lives.
And the, the, the autistic traits or neurodiversity traits
they have, they're very much like.
Right. And they'll offer advice.
Try this, we experienced this. Go down here, don't forget to
apply for that, but don't tell you about it.
But you need to actually get this application in here as
well. So there comes a point where you
go from novice to professional. It's how long it takes you to
get there. Yeah, so dads just need to
fucking step up, basically. That's why things are as they
are at the moment, because we're not doing that enough.
Yeah, absolutely. Yeah.
I think we've had this question before.
You know, everyone's got an opinion on it, but do you think
the UK should adopt the American structure and give neuro diverse
levels IEG such as level 1 autism, level 2 autism, Level 3
autism? Would parents back it because it
could help professionals in school quickly identify your
children's needs? Or would parents oppose it as a
label or try to manipulate the levels to access higher
supports? From there, one of our dads,
Andy there. It's kind of personal
preference. This one isn't it for me.
I would like something like that.
And again, from kind of the position we've been in where
people are trying to have said this before ad nauseam, when
people are trying to explain to us quickly roughly what level
they're at, where their kid is, it's very simple.
Especially the guys in America, when they just say my child's
level 2 autistic, I very quickly have an understanding roughly of
where they are. I think that's very handy, but I
understand on the flip side of that, there's a lot of parents
that are very resistant to the idea of putting a strict label
on it. And children can move between
levels. Yeah, they can.
They can move between levels and I don't think the level itself,
but the the badge, I don't think it's there.
Correct me if I'm wrong. Anyone in America listening to
this? I don't think it's there.
Just to say this is all you're allowed to have.
I don't know, might be wrong in terms of this is all you're
qualified to have as far, yeah, as far as existence is
concerned. Because then you'll get the
people that are just between levels there, that's.
The problem, that's what I would have a problem I'm you're
pointing level 2 to. Three, I'll try and get
reassessed, reassessed to trying to get and.
Trying to get to Level 3. I suppose once you get the
levels, then any authority government can then say, well,
it's in now, but oh, we're going to now use it to dictate what's
oh, you can't have that. You're just oh, just short.
But then I suppose you would also.
And we, we've already see this now within the the adult
autistic community is if you say I'm level 1 autistic, are you
trying to take away my struggles?
Yeah, yeah. Are my struggles not as hard?
Level 1. And my struggle's not as hard as
somebody that's a level 2 or Level 3.
No, I think it was. But this, this is it though.
But I think it would you would solve some issues.
Yeah. And in in solving those, you
create new issues. Yeah.
It's on the, it's on the on the scales of balance really, isn't
it? It's like, what?
What do you gain and what do you lose by doing it?
If you had it, I'd I'd, I'd quite like it purely from a a
labelling spec perspective. I wouldn't like it if it
restricted access to any other services if you weren't in a
certain level. I think the idea of trying to
get into a level for any other reason than I'm just trying to
let you know where I'm at. I think that's what it'd be,
really. Grateful.
I don't like the idea of people losing access to something
because their level isn't high enough.
We'll only accept level 1 applications for this job, yeah.
Exactly. Even though you're not, that
wouldn't be the case because you can't discriminate by.
But do you know what I mean? If you start seeing on
applications like Oh. You're level 2.
You're a bit too. Autistic goodness me, yeah.
Is that it for the dads? No, I think there's one more, is
there? Oh.
Yes. Do other dads feel guilty when
they're working away, wanting to call home to check in, knowing
all they're going to do is hit chaos down the phone and feeling
bad they aren't there to help? Totally get that.
Totally appreciate that. I know this is yeah.
What do you reckon? Yeah, it's 100% real.
That's 100% real. I remember being at work and
then just I should really touch base here.
Drop a message. How's everything going at home?
Yeah, it's a fucking shit show. It's absolutely horrendous.
She's done this. She won't do this.
She's refusing to eat. Everything's chaos.
Someone needs to walk the dog. I haven't got time to do it.
OK, and then what do I say to that?
OK, no problem to us. I'll be back in about 5 hours.
Yeah, exactly. And.
You've got this. And this guy works working on
the other side of the country. So it's not like, listen, I'll
pop back on my dinner break. It's like I can't do anything.
I can't do anything. So yeah, it's like that, that
feeling of if I don't call. You at all?
I'm a Dick head. I'm a Dick head because I'm not
even asking how you are, but if I do I can hear chaos.
You're probably a bit naggy with me because you're going through
it, which we all understand, and I can't do anything to help you
and. Then this is a cycle with with
dads then, isn't it? Or you know, it's like I can't
do anything to help. I thought, absolutely shit, I
know I do. As soon as I'm back Friday, I'll
just be full on hands on. Let me do everything.
Let me do everything just to give your partner a break and
then you don't recuperate, you don't recover, and then before
you know it, after. You work again on Monday.
You're. Back to work on.
Monday, especially if you're working away.
Yeah, yeah, probably driving. And the cycle starts again.
And on a Sunday night, probably. So just on a Sunday driving,
yeah. You don't even have time to
actually do anything as a as a couple.
You're just surviving. And then it's back to work.
Back to the grind. Yeah.
Back to feeling guilty. Yeah.
Yeah, it's a very real thing. That's a tough one.
But what I would say is I'd have a conversation about that.
I think I'd say, listen, I really want to call you.
I want to call you. I'm checking in because I care
about you. I don't care about how you're
getting on. Please don't lose your shit with
me. I'm doing my best.
You know, if you could have that conversation.
Yeah, I think, I think that's good because they'd.
Appreciate the call. The only bit of advice I give
with that is make sure it's not a WhatsApp video call and you're
sat in the bar. Yeah, it's so difficult here,
but yeah, well, that's the dad's questions.
Done. That's a dad's.
That's the dad's done. 7 questions.
Let's see how different they are to Mum's questions.
Yes, and there's 17 from the mums.
Goodness me. Right.
So quite well, this is kind of what we just talked about.
Why is it that mums end up doing all the research into the kids
diagnosis characteristics and common issues and then having to
teach it all to their partners? Is this common?
Why do we think it happens? Yes, it is very, very common.
Yeah, yeah, it's, it's 100. Percent Sorry, it's a. 100%
common and thank goodness the mums are out there because
otherwise no one would do it. So whoever sent this, tell your
fella he's not the only one. Yeah, don't, don't give him a
hard time. He's just a normal dad.
Probably crack him, crack open a beer for him as well.
Yeah, yeah. Crack open a beer for him and.
Tell him he'll be OK and just. Tell him everything's going to
be all. Right.
No, it's as we said before, mums, you're, you're just
fucking awesome. Very pragmatic, they just get on
with it. They usually spot it early.
I know you actually did in your case.
They spot it sooner and they get cracking.
What I would say is once a dad's accepted it, I think it's the
acceptance is the issue. It was.
It was for me, yeah. Once you accept.
It once I accept it, like you go through your head, you know,
you, you mentioned kind of pragmatic dads in other aspects
of lives that are pragmatic. OK, there's a problem.
How do I fix it? OK, we'll go around and fix it.
Some DIY needs doing. Yeah.
OK, I'll do it. Even though it might be shit,
you'll still attempt to try and fix it.
With autism. You're racking your brain going,
how do I fix this? Yeah, what can I do?
And you, you, you. You probably don't realise this,
but a lot of dads will do things like write.
Everyone's asleep. I've got a spare.
Moment. Yes, that's.
What I I'm like on YouTube here, signs of autism, autism traits,
going on to Google everything else like that.
And all that was desperately trying to find that it wasn't
that thing. Yeah, it was trying to rule out
autism. You're.
Looking at autism videos, hoping it's.
Not autism. And I've given a story earlier
on about thinking Lydia was deaf as opposed to autistic and then
having a Eureka mode. Yeah, absolutely.
And then that came crashing down.
So we are probably looking at stuff, but we're not sharing.
But mums very much like right, OK, I need to do this now I need
to do that now I need to get on on and sort this problem out and
dads, we we don't get on board straight away.
No. I always I think about what the
best way to approach. Everyone's different, we're all
different. But I wonder if hinting at
something, if you're the mum and you think OK, I'm 100% sure that
this kids autistic. I wonder if if like if with me,
if Miss should like she was like hinting and stuff like that, if
that would get my back up more than if she went.
We need to chat. We need to have a conversation
and we sat down. Don't hint.
No, I think. I think we have more.
Don't, don't hint. Because if you, you give a hint
and we're not ready to accept it, We we know it's a hint,
we'll bloody ignore it. Yeah.
We'll, we'll, we'll focus on something else.
That's it. I think it's like, I think for,
for all of this stuff to happen, accepting the diagnosis and the
the, the characteristics and common issues and all that
research that gets done, if you haven't 100% accepted that
that's what it is, you're not going to do that because one or
two things are going to happen. You're either going to be like
we've just said, researching it to prove that it isn't, or
you're not going to research it because you don't want to find
out that it is. So it depends on the kind of
personality you are. I was, I was the one that was
looking because I was hoping it wasn't going.
To be yeah, I was like 1:00 in the morning just like, what is
this? Yeah, this wasn't fucking
autism, right? This is something else.
And obviously. And everything.
I saw everything. Pointed Yeah, it was going kids
autistic. Yeah.
And you, unfortunately, yeah, you're going to have to teach
your partners. Yeah.
Yeah, yeah. Or at least initially go, this
is what it is. Here's some stuff you need to
watch and it love to everybody out there.
If if you're not putting the work in and you have accepted it
and you're consciously not putting the work in, sort your
shit out. Yeah, get a grip, because it's
not your partner's job. Whichever way around this is,
it's not your partner's job to do all the work.
This is why we do this. We get stuck in, isn't it?
The whole point of starting this podcast almost a year ago is, is
to get dads on board? Yeah, is because a lot of dads
didn't realise because we weren't.
Yeah, yeah, the other dads going through the same thing and
spread a bit of awareness and get more dads going.
Right. Shit.
Yeah, exactly. My life is going.
To be different. It's going to be different.
If it's not over. It's absolutely no, absolutely
not. It's going to be different.
Yeah. It's still your kid.
But get to the point where it's a bit like put your big boy
pants on. Oh, 100%.
There comes a point where you, you, and in all honestly, some
dads probably need a good slap across the face.
And just go look. Wake the fuck up.
Wake the fuck up now. Your kid needs you.
Stop this. Why me?
What have I done wrong? I hate everybody.
Why is my life so shit? Why do I get dealt with this
hand? Do you know what it's done?
Get on with it. Do the best you can for your.
Kid. And yeah, the best you can for
your kid. The fact that all the things
that make us disappointed that we've got an autistic child just
get worse if you don't act on the fact that you've got an
autistic child. Yeah, 100%.
Just act on it. Learn what you gotta learn and
get on board. You could be the best.
Get on board and give them an actual shot of reaching their
full potential. Exactly.
Otherwise, they're going to come a point where it's too late.
Yeah, it's too late. And then what you're going to
do, they sit there and go, oh, I could have done more.
I could. Which is what words are fucking
cheap. Yeah, don't get there.
Yeah. Don't be one of those people
that goes, oh, I could have done more.
No, you can do fucking more. Start.
Now and the early years are the best time to do it.
That's the time to do it. Don't start making it about you
again. Yeah, wake up, get it sorted.
Yeah, 100%. And we all know there's there's
there's certain. You know, it seems to be
particularly dads. But there are dads out there
that still won't accept it. No, I know.
Yeah. They'll just go.
No, no, I'm not. No, My kids, fine.
Nothing wrong with my kid. Your kids like just lined up 50
cars in a row in colour order, still see it in manufacture,
still see it dates and everything else.
Like bump into people and you're like, yeah, you know, and, and
they're like super duper autistic and, and you kind of
have a conversation. Oh, you know, they, they think
you might have a little bit of autism and you're like, OK, So
what, what school in in this case, you're not like this kid
needs specialty school and like, no, we don't want him to go to a
specialty school. He's he's gonna go to mainstream
because so we can like grow out of it and you're like, fuck.
You'll grow out of it. Like, all right.
Yeah. And if you're one of them dads,
like, just give your head a wobble.
Yeah, give your head a wobble and do the best for your kid
rather than yourself. Yeah, exactly.
Yeah, next one. Okay 2 #2 how it's best to
support our husbands and partners after our child is
diagnosed. So crack open a beer.
Crack open a beer. Stroke them.
Yeah, just. Stroke them.
Like this? Oh.
Say it's OK, darling, it's going to be OK.
Do you know just? His brain's not broken, he's
just autistic. Yeah, God, best way to support
them. It's most of these questions
about, I've already read them. I bet all the ones off mum's
going to be like, yeah, can you help me?
My husband's an actually fucking moron.
Yeah, jeez, best way to support them.
I think it's just it's sometimes it's give them space.
Why is it the mum's asking how they could support the dad?
It's. Like it's like, why isn't this a
reciprocal? Like it's the mum's going, it's
fine, I'll do all the supporting in this.
Position I'll do the the caregiving role for everybody in
the house, yeah, including you and.
Then start me perhaps? Yeah, dear me, I do know what if
if I'm looking at this seriously and we.
We've got, yeah, I think, yeah, there's an element of work out.
When's the right time to give space to get their head round
it? Obviously let's hope dads don't
take the piss too much. But at the same time it's just
be open for a very frank conversation.
But I think, but I think also layout that you're going to
have, we need to have a really, really frank conversation now.
It's not going to be pleasant. No, it's it's something we we
both never thought we were going to have to do.
Yeah, All right. Let's make a promise that we
don't overreact. Yes, Take it too personally.
That's what happens now. We don't do finger pointing.
We're not going to talk. About it, yeah, We've got a
child that is autistic or potentially autistic or
neurodiverse. Yeah, we need to talk about
this, get used to it, but also let's get a game plan.
Yeah, moving forward, Let's not just stay in this kind of
perpetual going round. We're dodging the question.
We're not having a full conversation.
We're just having snippets of it.
And then, you know, you book out some time and sit down and get
everybody on board. Yeah, like our child is
autistic, OK, Yeah, we we've got lots of stuff we need to do.
Yeah. But until you accept the fact
that our child has autism, they can't be the best they can be.
Yeah, I need you to accept this because that is reality.
Like it's just going to be that, like that black and white.
And I would I would also say because I know what men are
like, having been one for many years.
So experienced. Is as a dad, when you have that
conversation, focus your attention on your child.
Yeah, not yourself. Not yourself and don't get
sidetracked down little rabbit holes like you do when you're
scrolling on Instagram or YouTube about, oh, what has
caused the autism and then go down conspiracy theories or
stuff like that. No, no, don't worry about all of
that stuff right now. Focus on your kid and getting a
game plan in place, looking at the HCPS, looking at the right
care education, getting in touch with, you know, therapies who
can help in all all this sort of stuff that's going to be
positive. Look at that, yeah.
And make sure that's where your attention lies.
Everything else you can wait down the line, start exploring
that. We've got a bit more spare time
at the moment. All your spare time should be
absolutely 100% down. Yeah.
And then that will start to, you know, dissipate a little bit.
And then you'll turn into an absolute autism parent beast.
Yeah. And yeah, yeah, you'll be
surprised looking back a few years on.
That's the fun you would like. And how, how like clued up you
are now and, like, anyone want to talk about autism?
Oh, yeah, I'm in the room. I'll talk to you about autism.
Yeah, yeah, yeah. Let me tell.
Did you? Ever see photos of yourself from
like when it was really I mean. Not when you had like no grey
hair and smiled. Yeah, and you were just like I I
miss you every now and then. She'll like, send me a photo.
She'll like, oh, you were, you were bad then.
And she'll send me a photo. And you can tell I've either
just been crying or I'm just exhausted or it's like something
I'm just looking emotional. I've just got this deadpan look
on my face and I just look done with life.
And like, he sat there on me just being Thomas.
And you just get these little snippets, don't you?
They're like, oh, I forgot about that.
Yeah, I just remember like it. Must have been so useless.
Yeah, same sort of photos or you, you go see your parents,
but you're so exhausted. You just, you just completely
deadpan. You can't even engage in
conversation. Minimal, minimal words.
And you're not trying to be rude.
It's just like you've you've spent so long, you know hey I'm
at work I need to put an image on everything.
Okay yeah you're masking and people are going house house
things at home and you just go well it's difficult but we're
getting through it yeah and inside you're.
Taking it a day to. Time you're like, absolutely.
You want to die? Yeah, you're just like
everywhere. And then you go to a safe space,
like you go to family or your parents.
You just like just let it all out.
It's like. Autistic masking that.
Isn't it? It is.
It's exactly what that's what
masking is. Isn't it?
Yeah, absolutely. Right next one, how do you
process trauma of being labelled overly anxious by school and
even family only to later learn your child is autistic with APDA
profile and that your instincts were right all along?
PDAI always say this. PDA is one of those ones where
it's just you. You need to experience it to to
know. Because I have 0 experience with
PDA because I don't have a child with PDA.
I can only imagine what it's like because even people like me
will go because I've never experienced it.
I'm like is is it? Is it PDA is PDAA thing?
I mean, I know it is. It's 100% No, no, no.
It is a thing, obviously, but there's a pot.
When you haven't experienced it, it's hard to imagine what the
difference is between OH. PDAI think, I think in the early
days when I heard about it I thought, oh your kids just
taking the piss out. Of you, that's what I mean.
Your kids running, you know, toughen up a little bit, yeah.
Just get them to do it. 100% not, 100% not and I absolutely
get it. And you know.
So you can imagine, can't you? Like you've been labelled as
overly anxious. By again it's by people that are
on it, not I was going to say uneducated.
That's not the right word they just have no experience of.
It no. So if we can, if, if we can
admit in the kind of scenario that we're in with the podcast
and stuff that PDA is almost impossible to understand unless
you experience it, you can fully understand why a family would
think you're just being overly anxious.
Overly anxious because again, I'm only speaking about autism,
never mind adding the layer of PDA on top.
You learn what your child is like again through having to
make mistake after mistake after mistake and you fine-tuned it
over over so many years to get to the point where you can
actually understand the nuances, what your child needs.
Everything else like that. If it's PDA rewiring your brain
and how to how? To ask a question, how to ask a?
Question when to even bother. Yeah, having a conversation or
when to actually. I'm going to pull back now
because I know if I do this, we potentially could have a an
incident here. So you spent so long actually
getting there and then somebody's got no experience
with your child will say something and then you'll be in
neurotic or overly anxious. No, it's because I've lived like
this to get to this. It's taken me years to get to
where I am now. Don't tell me how I feel.
And then somebody even just making you feel like that, I can
only imagine how much it would annoy me if it was it was
happening to me or really kind of pissing me off.
And then everything else like. That, I mean at the at the light
end of that, I've had family say very early on, I know you've had
the same. They're not autistic, they're
just, they're just a bit delayed.
That pissed me off. So if that pisses me off, I
can't imagine what that's like. No, like PDA, it's like this.
It feels like, again, I've not experienced it.
It feels like you're in a world where you think you're going mad
because absolutely everyone else is thinking you're mad because
they can't see what you see. Everyone else sees your kids
being a shit head because he's just refusing to do stuff.
But you know that that is not reality.
I mean totally bonkers. Absolutely.
I'll be losing my mind and. Then you're having to live 2
lives. You've got a couple of kids,
one's got PDA, 1 hasn't. Oh, and then you have to justify
to the other kid why you're taking a different approach to
the child that's got PDA. How come?
How come they're not being made and then?
The neurotypical kid, you know, if they've done something
naughty, you're just very no sort that out now that's
unacceptable and to the other one you're completely different.
You're like but I've I've got to explain to another child who
might not quite get it and and you're just constantly plate
spinning. I wonder if some.
Kids that have got less of an understanding and then they're
not, they haven't got APDA profile that are they learning
behaviours from a child that is PDA because from their viewpoint
are they seeing again, if anyone wants to comment and let me know
if your child sees that you're being different with the child
with the PDA profile, is this child learning?
OK, well if I kick off, does that mean I don't have to do the
thing? Does that thing mean that mum
will ask me a different way or do you just speak to all your
kids the same? Yeah, or or do both kids as your
approach to your entire family in the way that you request
stuff, deal with stuff just the way the family.
That's what it means. Everyone takes it on board.
Exactly. Does everyone just and?
Your kids are like, yeah, that's fine.
That's no one's making demands. Yeah, well, it's not even just
demands. They can be perceived demands.
And then what happens then if that kid goes into the into like
a normal school or the normal workforce where you get bosses
are very much like, no, you just do that shit because I told you
they do it. It's it's no, there's so many
different layers and. There will be some people out
there. Goodness me, we've only been
talking about 5 minutes and we've already got my head
screwed. Well.
It's not in it, but but there would also be some people out
there that are like narcissistic and they're like, don't tell me
what to do. And they would go, oh, I've got
PDA. Well.
We all know people who have got ADHD diagnosis later in life and
are using it as an excuse to, yeah, justify some of their
behaviour. Anyone's dealing with PDA fully
appreciate what an. Absolute mind and and going back
to your instincts, do you know what your your gut's right
usually. Most of the time.
Yeah, my gut was right about Lydia.
Yeah, from day one it's been right about a lot of things.
Yeah, Miss, Miss. She's got out of the gut on her.
Like she. If your instance are going down
there. She's always like trusted gut
and mums have just typically just.
You you know your kids better than anybody else.
Yeah, At the end of the day, sorry.
I'd go with that. OK, Next question.
How do you cope with the isolated feeling of bringing up
neurodiverse children when it is so hard to relate to parents of
neurotypical kids? Yeah, we've talked about these
lows, haven't we? You just find another tribe.
Yeah, find it sounds, it sounds really easy though, doesn't it?
It does sound easy. You know what?
You know there's friends you had in that, the community you had
before. Fuck them off and just go find
somebody. Else I wouldn't necessarily fuck
them off but just find another tribe that you can just it and
it's contact and feel less isolated with because it's hard.
Yeah but even PDA you could. You could have a child with PDA.
You need to find another parent with a child of PDA to
understand PDA. Because like a lot of parents in
the autism community won't understand it because they're
not living it. No, exactly so.
Like a lot of, you know, families in the autistic
community who don't have non verbal children.
Yeah, they wouldn't understand. They wouldn't understand some of
the stories that like these families are going through,
like, you know. And I'll never understand what
it's like to have a child that's.
Autistic. And high functioning and you
know, in the same between a kind of I wouldn't never understand
that. I'll see like we've we've got
some some mates in the group where they've got kids that
they're verbal. You know, they talk, they can
have conversations, but they have severe anxiety about
certain things. And I'd be like, but they talk
what they're anxious about. Do you know what I mean?
Because all I'm experiencing is this this child that's non
verbal. I'm like, OK, well, I don't know
what that's like, yeah. So it's, it's, it's crazy.
Got something like, you know, some of the dads have said we've
got kids that are he's, he's absolutely outstanding in maths
and science, but when it comes to English language and
literature, he's, he's way behind or anything else like
that. It's, it's, it's one of those,
isn't it, in terms of feeling isolated Again, it's something
we all go through. We all go into that little
bubble where we kind of withdraw ourselves to a certain degree
because you don't want to keep having the same conversation.
You don't want to have those kind of looks of not pity or
people go in. I don't understand what's going
on. Your life is going to be so
hard. I don't know what to say.
With the pity, you're kind of already feeling sorry for
yourself early on, so then when someone else gives you a little
bit of that, you're like fuck, like Nah, I don't need you
feeling sorry for me as well. And then you get people that can
see it's difficult so they don't have to act to, to kind of
operate so they don't ask how you're doing.
And then that will piss you off because you're not asking me how
I'm doing. But then when they do ask you
how you're doing, you're like, oh, you know how I'm bloody
doing. Difficult, but I'll tell you
what you want to hear. So it is really, really
difficult. But I think eventually you do
start meeting other parents, whether that's, hey, there's a
coffee morning for send children and you're like, do you know
what? I'm going to go, I'm just going
to go to one of these. And then it's like, Oh my God,
everybody around here gets it all.
My child's had a bit of a meltdown, but no one's looking
at me. They're actually, hey, no,
that's absolutely fine, though. Oh, you see another child having
them out and go, goodness, it's not only my child that does
that. And you start going, right.
OK, there's other people that get it.
But again, that takes time. And that's you having to put
yourself into uncomfortable situations.
If you're not one of those individuals that, you know, I've
got to meet people for the sake of meeting people, not because,
hey, you're a great guy. I want to be friends with you.
It's like we've got something in common, haven't we?
Well then what tends to happen is you actually end up making
friends because you realise these people are complete
absolute nutters or they've got things in common with you or
they talk you into running marathons or anything like that.
So it is. It is difficult, but.
But yeah, I'd like like Brian just said they're like find a
group. Just find even if you're like
Facebook. It's just, I remember well that
first time I ever found a Facebook group, I, I did gain
some relief from it, but at the same time, it very quickly
turned into like a bit of a cesspit of people trying to give
advice. But then the advice you've given
is like, they're still kind of poo poo in it.
And you're like, you asked, you asked me for advice and now
you're shitting on the advice you've given you.
And like you do, there's a lot of people that are feeling a bit
down and out and they tend to express that in these groups.
So sometimes you think you've found your tribe and you're very
quickly like, you know, this tribe sucks.
But yeah, just that's the, the loneliness aspect of it, the
feeling isolated. The only way to not feel
isolated is to find other people that get it.
Yeah. And in terms of relating to
parents from neurotypical kids, I, I remember this early on is
seeing other friends with children that were neurotypical.
My sister's got a, my, a daughter, my niece who is 6
months older than Lydia. So always having that kind of,
oh, that's what Lydia should be doing, but she doesn't do it.
And they would just highlight how different Lydia was.
You know, the fact she was going around having full
conversations, you know, telling me what colours are and I could
trick her and go, what about this colour that's green?
She can now it's blue. And, you know, all this sort of
stuff. And it, I find it really, really
difficult. It's always a reminder of how
different Lydia was. Now Lydia's 5, I don't have the
same feeling anymore. To a certain degree, there might
be odd days, but now I can see other children and just be happy
that they're doing well and happy for the families and the
parents that your child's, you know, it wasn't.
It's not a stark reminder anymore of how different my life
is because I've accepted Lydia for who she is, and nothing's
going to change that. And I don't need to push any
malice onto anybody else or, you know, feel like, oh, why is it
like so hard for me? But I think that comes with time
and acceptance. Yeah, definitely.
It's I remember that lad who who was having a child at the same
time as me and mish the one I met.
Outside the hospital. And we went to his wedding.
So maybe he was, maybe he was 3, something like that.
And he came over and, and I think what happens is you very
quickly, unless you've got a lot of other kids around you, you
forget the developmental stages. So when he, he said, oh, go
over, go over to Gaza and he'll tie your shoelaces.
And like he just comes over and like he's like, hey, and he puts
his foot out and I'm like, tie your shoelaces.
And I'm like, oh, shit. So I can't relate to him.
He was a lovely kid. Like he was amazing, amazing,
cute kid. But yeah, it's it's difficult to
relate because your world is completely different to the
typical world. If you haven't got any other
typical kids, it is rough and it sometimes knocks you, knocks you
for six because you're not expecting it.
Yeah, you. And there's a lot of stuff to
process. I remember like, you know, if I
had a tough day, I'd be going down a bit of a spiral.
You know how the brain works. And as soon as you put one -4 in
there it goes. Hey, here's another 10 that we
haven't even looked at yet. Let's let's go down here.
But it could be things like I'd come home and I'd go through the
door and most families would have their kids go, oh, dad's
home or, you know, really excited or want to tell you
about my day and everything else like that.
And I then go, oh, I'll have a kid that will never come up to
me and say, oh, Daddy, I love you or anything else like that.
And that put me in a real kind of this, you know, this will
never happen. You know, you start going down
that route and everything else. But I think again, it's just
getting your head round that it doesn't change that much.
I saw sort of I'll send it later and I never really get all
worries me about this stuff. But there was a video the other
day and it was really nice. And I think, I think Mitch sent
it me and it was it's the first part of the video was like, Are
you sure you don't want to be a parent or something like that?
And then it was just video after video of of children getting
super excited to see their dads coming home.
And I mean like. Insanely excited and these these
little girls were just like bouncing like daddy, daddy.
And then they'd like run in and jump and hug and one girl was
just crying. She was so happy.
And I saw that and I was like, like, it doesn't matter how how
used used to having an autistic charge you get and enjoying and
celebrating how amazing they are.
Sometimes it's still you go, oh, I'm never going to have that.
And it just it. So yeah, it's and when you
accept you're never going to have it and you and you, you
make a conscious decision as well for a lot of us not to try
and have other kids, you know, because me and Mish have talked
about it like loads. And you just like the odds of
love, Thomas the death. But the if the odds are still
quite high of having another autistic child who's as profound
as that. You're like, oh.
Do you want to roll that dice? Yeah.
And the other thing, it's not just like, do you want another
autistic child, but by having another one, am I taking away
from Thomas? But then also by having one, am
I hoping I am I doing this partly because I want a
caretaker for when I'm no longer here or.
Do you just want a normal kid in bracket, you know, You know,
because you want to experience all the things that you,
everyone else has experienced. So are you making it about you
again? Yeah.
There's there's loads of reasons and admittedly, like when we
thought about it, I've been like, oh God, if we had a
typical child like Thomas should be looked after when like we're
gone. And I'm like, that isn't the
right, right idea to bring a child into the human, into this
world because I want a caretaker for my disabled.
Which are a mediaeval. Aren't we an heir and a spare?
It's mad. Isn't it an heir and a spare?
It is crazy, yeah. I went totally off right where
we at now. Which one is it now?
Question 6. Question five, I think 5.
Oh yeah? What voice would you give to
someone who wants to support parents with an autistic child,
A grandparent, a friend, a family member, for example?
Don't. I'd be quite blunt here.
Don't say they're not autistic. Yeah, don't shit on what the
parents think might be going on with their kid.
Yes #1 completely understand why people do this.
They want to give reassurance. They want to give hope that it
may not be as bad as you think. Yeah.
Where if a parent has told you their concerns about their
child, trust me, they're probably only giving you the tip
of their concerns and there's a massive iceberg underneath of
everything else they haven't even told you are that they are
pretty certain that and if kids. And if they think it, they've
done the research. They're not.
Yeah. And what they're doing is just
sounding you outgoing. I think my child may be autistic
or they're sharing traits of this and this.
The chances are they have researched the absolute hell out
of this. They're pretty much 99% sure
they just want a bit of support. Not everything's going to be OK.
No, they won't be autistic. Or guess what?
I saw an article about a kid that couldn't speak until they
were 12 years old, and now they're, you know, they're a
professor at a university and everything.
Else it is another one. Don't send them articles of
cures. Don't send them anything Where
like this kids, this kids had this treatment and it reduced
their diet, their autism by 30%. Like it?
It seems like you're doing a good thing, but you're not.
Nothing. Nothing.
Yeah, yeah. Because nothing like that.
Because at the end of the day, there's there's no proven method
of eradicating, removing. Yeah, it's there.
I've seen articles and I've thought like God, if anyone, if
anyone had ever sent me an article like that article there
like there was the other one as well.
There's like stem cell treatments and stuff, isn't
there? You can get like stem cell
treatments which are insanely expensive.
Like I have no interest in someone telling telling me look
at this thing that you'll never be able to give you a child and.
You might not go tell a horrendous story there.
Oh, go on. It's a prime example.
But this is like extreme and I won't I won't say who, who who
said this because it came from a good place.
But Lydia is always is obviously non verbal And I remember being
told oh we saw a movie about. I'm already laughing.
We saw a movie about this, this autistic boy who was, who was
non verbal and he was in kind of some sort of residential care,
but then he, he, he learnt how to communicate with an AAC
device or something like that. So laughing about this because
it's like it's, you'll understand why.
And then they carried on and said, yes.
So when he was in his home and he got sexually assaulted, he
was able to tell the authorities who actually did it because he
was able to communicate with ACC.
So isn't that great? I was like, this is a movie.
This is an actual movie that was out there.
I just remember going that hasn't filled me of any hope
whatsoever, even though I know it's like so they can learn to
the. Moral of the story is teach your
child to do an ace AAC device so that when you're gone, if they
get sexually assaulted they'll be able to report it.
Yeah, amazing. And it came honestly, it came.
It came from. Now I know a.
Beautiful place to support and, and 100% and love.
And I know they were trying to go, yeah, you know, we're doing
our research and autism and everything else like this and
we're trying to understand it. But I just remember thinking
probably not the best example out there.
No bloody hell. But yeah, but for grandparents,
friends and family, just just listen.
So I'd say to to grandparents don't deny the fact that the
autism is there in the 1st place and that they're just a late
bloomer. That's a classic one for
grandparents. If you're a friend drop a
message every now and then. Just say hey sings mate, how's
the kid? Do you need anything from me and
family? As tough as it is, offer to just
give them a little bit of respite every now, every now and
then so they can go and grab a meal, go to the gym.
Like do you want me to just stay at yours for a few hours just so
you can pop out and do some, do some stuff for yourself?
Like that's what I would do, I think as a family member.
So they can go shopping or do the shopping for them and just
drop the shopping off. And again, family is very
stressful. Don't two way thing as well for
for for family members if there's family events taking
place like birthdays, everything else like that and you want to
offer the invitation out there, you know, do it still offer the
invitation, you know, come along.
It's a it's a, you know, we want you there.
At the same time, be prepared for the response to be no, yeah,
yeah. And don't go into too much deal
like, oh, please do. We'll, we'll make a change, you
know, just go. No problem at all.
If you need anything, you know where I am.
Yeah. Everything else, like don't put
any guilt pressure on that, that parent, the group of parents go,
no, we can't come to that. And don't make them have to
justify it. You know why they can't come?
Yeah. And I would like if it if it was
a wedding, for example, if it's a wedding and all the family's
going to be there and all the friends are going to be there,
don't pressure them to come. Yeah, I'm using wedding as an
example. But also when you put the
invite, AI would specifically say like if somebody had said,
listen, we'd love you to come to the wedding, but do you think
it'll be a bit too much for Thomas?
If it is, that's fine. Like highlight the reason it
might be an issue. Don't make me go around the
houses to have to tell you. I I would prefer it if somebody
already recognised that that might be the potential problem.
Like, we'd love you to come, but if it's too much for Thomas,
totally understand that that's how you do it.
And don't, do not fucking guilt people into coming because you
want them there. Because you're wanting them
there is nowhere near as important as the shit they're
going to have to go through to take them there.
The stress of finding someone to look after the child.
Or if they take them. Or to take him and at the same
time. Because no one else can look at
the child. And I'd say at the same time, on
the flip side of that as as parents to neuro diverse
children feel comfortable in saying no to things.
Yeah, don't again, don't feel pressurised and do anything.
Don't feel you need to justify anything.
Thank you very much. We're not going to be able to
make it this time. Hope the day goes great.
Yeah, yeah. Because early on, there's always
that I'd love to come. I can't come because of my
child. Yeah, I know.
Yeah. And my child is now spoiling all
my fun because I can't, you know, don't need to justify it.
No, your friends and close family will know why.
And if they do know? Yeah.
I'd appreciate it if it wasn't kept quiet like it was this
unspoken thing for me. If someone just highlighted it,
is it going to be too like, yeah, it probably is, mate.
Is that, is that all right? Yeah, of course it is.
It always seems like this thing that people don't want to
address with you because, like, skirting around, they know why
you're not coming. Just say it.
Just just say it. It's it's like this sometimes,
like having a disabled child feels like this, like this
secret that's underneath the stairs that no one talks about.
Like, do you know what I mean? Like, no, everyone's scared to
address it. Like, yeah, it's disabled.
Cool, let's talk about it. It's fine.
Let's just talk about it. Let's not pretend it's this
fucking thing that lives under the stairs are in the basement.
It's weird. Like what it's like some people
do. They treat it or don't mention
it 'cause it might upset them. I live with it mate, Ain't upset
me. It's more upsetting if you
fucking don't talk about it. Bringing back memories of the
1980s with a certain community where people going.
Oh yeah, I can't. Be associated, we mustn't talk
about it's absolutely fine which.
One next. OK, next question.
OK, interesting. How do you cope as a single mum
when your ex blames your parenting for your child's
diagnosis? And when there's OMERS, no one
to one support available unless you go private, OK.
Oh yeah, OK. How do you cope as a single mum
when your ex blames you? First of all, if your ex is
blaming you for your parenting that's led to your child's
diagnosis, it's not a reflection on you, it's a reflection on
your ex. And they're probably an X for a
reason. I don't know if that's the
simplest way of saying it. Yeah, I think I don't know the
X. We know, I know dads are like
this. I know a few dads who are like
this. I've heard stories where they
just blame the mum, dad, there's not an issue, there's no autism.
Absolutely. It's the fact that you're a ship
parent. It's an example again of if, if
the if the other parent, if the dad in this in this example,
they clearly haven't accepted the the child's autistic.
Yeah, they haven't accepted it because if they had, they
wouldn't be blaming you because you can't create autism by
parent in any certain way. And there'll be assholes,
assholes out there that know it's nothing to do with the mum
parent, the mum's parenting, but they just want to make them feel
shit and say stuff like that. Yeah, nothing, even nothing to
do with the child. Even if they do believe.
It yeah, they just want to make the other person feel shit in
some continuous game of who's right and who's wrong.
Yeah, I'd actually just have as little contact with your ex as
possible. Do you know what that might be
the best thing? I think, yeah, I think, I mean,
this is really going around about the ages.
If your ex makes you feel like this and says stuff like this to
you, you need to. And if they still have access to
your kid, then I would get a court order so that you
literally have it set in stone when you both get to spend time
with your child. And by doing that cuts
communication right down. And basically make sure that the
only time you have and you only agree to have conversation with
them is if they're not going to say shitty things like this.
Yeah, keep a look of it at the same time, Yeah, your energy's
got to be focused on your child, isn't it?
You don't want to be wasting any of that precious energy on
dealing with shitty conversations with a shitty
person. At the end of the day, do you
know what? And if you're doing it as a
single mum, we can't trigger code this.
It's going to be incredibly tough.
Yeah, it is. Yeah, it's going to be
incredibly tough. It's hard enough when you've got
a, a partner that is on board or you know, like the dad is like
50% in, 50% out. It's hard as it is.
But to do it as a single mum, I I'd find those support groups,
other communities there, there must be other mums in a similar
situation have, have a close knit group of people that you
can rely on. You know, even if it's just you
speak virtually over, you know, Facebook groups.
You might not even be in the same town, but you can support
one another or just have an outlay of somebody that you can.
It's been particularly tough today.
XY and Z's happened and somebody that absolutely gets it.
Sometimes I wish I could spend time with some of these, some of
these kids, just to see where the autism is, what level.
It's like, yeah, you can't parent that.
You can't create that by parenting.
Don't worry. But yeah some people are just
Dicks mate. Sometimes you just have to go.
Like obviously it's not nice but sounds like it's just been a
Dick. Yeah, I don't think there's
anything else to say to that. Not a great answer.
Your ex is a Dick. Next question, How can I keep
calm, cool and advocate effectively to be helping our
family when a subject access reveals request reveals they've
been labelling me and my child behind our backs.
Yeah. You can't trust them, can you?
Or it's certainly going to make it very difficult to.
I'll. I'm going to send them a
message. I think we need to speak to
them. Yeah, that's not great.
If professionals who work in this industry say industry, Oh
my God, In this sector, it feels like an industry sometimes,
Yeah. We'll we'll send you a message.
Yeah, but there, there should be none of that taking place.
No, they shouldn't. Because, you know, I'd be
tempted to find out who they are or if it's a local authority and
then get every other parent to do a subject access request.
If they've done it to you and I'm guessing the labelling is
going to be similar to the previous question, yeah.
Yeah, I think so. OK, that's really bad.
Is the one that we've missed out there?
Oh, is there? Is it question 7?
Nope. This question seven question 8
look very. Similar do that's why I call
mate. Do you want to do that one?
Yeah. How can I keep calm, cool and
advocate effectively when the professionals who are supposed
to be helping are behaving in ways that are generally
triggering? That's.
The same person. Oh, that's the same question.
They're linked. Well, that's a different
question, but. They're linked together linked.
So we'll contact this individual privately.
Yeah, I think. She's going through it.
It's not great. You've got enough shit on your
plate. Then to the people that are
supposed to be helping you, I'll do in the opposite, yeah.
How do you keep your cool with the judgement, comments and
unsolicited advice when people you've who've never lived this
life? Oh, I'm very good at keeping
cool unsolicited. Advice.
That's the best one. Yeah, I think there comes a
point where it just doesn't hit home anymore.
You, you have to, you have to ignore it, don't you?
You you develop. Thick skin.
Thick skin and you shouldn't have to, but the way to cope
with it sometimes is that you do, you know, the first couple
of times you hear something, yes it hits home.
It you know, smacks you straight in the heart, doesn't it when
you hear stuff about your own child.
But there comes a point where you just realise you're an
idiot. This doesn't this doesn't help
me. I'm not wasting my energy time
having to re educate every person that says a silly
comment. And like, where are these
comments and and where's this advice coming from?
Like if I had to guess this is from like family.
Well, unsolicited, unsolicited advice is, is usually family.
It it can be family again, coming from a place of love,
trying to offer hope or trying to protect you as that, as as
you are their children. They, they continuously want to
do that. So they don't want to be the
people that put a dark cloud over you and, you know, feed
into a doom and gloom. But it can also be, you know,
certain part, you know, I'm going to say older generation,
but not necessarily, but it can be people going, Oh, there was
none of this in my day. It's what they need is if, if
they won't eat their dinner, leave it out.
They'll come back when they're hungry.
It, it could be stuff as simple as that.
When you know, with an autistic child, you know, they're not
going to come back just because they're hungry.
You can't stop offering food. Or it could be like, oh, turn
the TV's off and don't give them any screen time and they'll fall
asleep and all this sort of stuff where in my day we used to
do that. You know, all this like comes
through unsolicited device. It's it's whether you've got the
relationship to talk to your parents and say that's not
helping or if you haven't, then you've got to be prepared just
to I think like you better go through 1 ear and out the other.
Yeah, I think like we said before, I think I'd be saying
like if it was family, if it's family and and friends or
whatever, you can't just cut them out your life because
they're they're a part of your life.
Randoms on, on the Internet, you can just block them and cut them
off. Like if it was, if it was like
my parents, for example, I think I'd have to, again, like we said
before, I think I'd have to have a conversation like I'm not
going to fall out with you about this.
I love you, but I'm not going to fall out.
I need you to stop telling me what to do.
I know what's best from my perspective.
Stop giving me advice saying, because I'm guessing the advice
is, you know, man, you need to be stricter or you need to do
this or you need to do that. It's like I'm doing it the best
I know how. Stop getting involved.
You'll have to say that and like, and if you can't stop
doing that, I'm going to have to stop seeing you.
Yeah. I think you've just got to be
harder people sometimes. If you're not, then they don't
really know how much they're bothering you.
Yeah. So they don't know to pull back.
Sometimes you just have to. And then sometimes it gets
harder as the child gets older. Yeah.
You just have to to kind of address it as soon as you can.
Yeah. Why is it so damn difficult to
get heard by professionals when you're raising concerns about
your own child? Seems like it's getting harder.
It seems like it's getting harder with the the stuff.
I it might just be my Spidey sense sense is going a little
bit mental. But it seems since the white
paper talk, it seems like people are struggling to get any kind
of support services, even to get assessed.
It. Seems like it's getting harder
and harder, and I feel like that's the local authority
seeing the writing on the wall and being like, well, let's just
kick this down the road a little bit further, which they do
anyway, but it feels like it's getting harder.
It's, you know, it's, it's getting harder.
We all know that more children and adults are going through the
diagnosis process. There's only so many
professionals that work in this field.
They're already at capacity and overrun.
You know, we talked about Lydia's assessment getting
pushed back and pushed back for autism.
So access to these individuals, it's going to take longer to get
until we have more people trained in this field and more
professional speech therapists, you know, all this sort of stuff
that understand are there to provide a service and money's
invested. It's going to get harder.
I don't think there's anything I can say you can say that or kind
of overcome that. Unfortunately, it's.
Funding. It does come down to funding and
it comes down again, unfortunately, to parents having
to be completely on the ball, being those people that I want
this sorted out. You said it'd be sorted.
Out. Even if it's at a character,
you've just got a. Yeah, But you know, yeah, we're
all kind of the nicest people at work and everything else like
that. But we said in previous podcasts
at the start, you're very trusting of this, the kind of.
And if, if you are trying to fight the system or anything
like that, like do send us a message or send us an e-mail and
we've got some templates for different scenarios, you can get
in touch with this and we'll send you these templates.
So you can, you can send them. They're pretty ironclad and
there's like, there's different ones for every stage.
Isn't that like depending on where you're at, We've.
Done some 62nd videos like no bullshit videos on like the HCP
process and things like that. So when schools are saying, hey,
we don't think you need to worry about this, you know, you don't
need to rely on the schools. You can take the process.
Starts, you know, the HCP. Ones really good.
There's so many different things there, but a lot of it is, yeah,
it's making sure that you're fully educated yourself on on
what needs to be done and and unfortunately maybe changing
your characteristics a bit and and being a real pain in the
arse. Yeah, whoever shouts loudest
sometimes does work. I'm not saying it works all the
time, but if you're going to be a pain in the ass, it's harder
to fob you off. Yeah, 100%.
Yeah. Just it, just the way it is.
LA local authorities are looking to conserve money and they're
dealing with so many cases. This person's quite easy and
quite tame. Then you're not.
I have to. Be the person.
Yeah, and I'll deal with the person.
That's been a real. Another e-mail from this
individual. God, I just want to get them off
my book. Squeaky wheel gets the grease.
Yeah, exactly. Why is there still so much
unawareness of autism even within the medical community?
Yeah, what do you reckon mate? Oh goodness me, is that I think
that's training. Training, yeah.
I think that's training. We.
I think we've spoken to so many families where they've gone to
see GPS, for instance, you know, I think I've got concerned about
my child. Yeah.
And the GPS just dismissed it. Yeah.
Oh, no, nothing wrong there. Nothing to worry about.
Yeah, yeah, yeah. And you walk away thinking, is
it just me? Is it my parenting style?
Is everything else like that? I think there's, there's more
training. Yeah.
There's, you know, and even when the white people was coming out
and there was a talk, every teacher in this country is going
to be trained in neurodiversity and everything else like that.
We saw newspaper articles from the Guardian from, you know,
places like the The Spectator, and there were teachers actually
coming in. I'm a teacher.
I've been teaching 30 years. I think it's a bloody nonsense,
all this neurodiversity. Parents need to toughen up and
be more disciplined with their kids.
And they just want a label. And these are teachers.
So part of it is a training thing.
Part of it, unfortunately, is, you know, is it too old to teach
certain dogs new tricks? Do they want to learn?
Do they want to be part? Of you don't want to learn that.
I've got five years till I retire.
I don't give a shit. I'll just carry on doing what
I'm doing. It's, it's going to be like
that, but it, it takes community to keep pushing, keep shouting
and and demanding that more things change.
And it wouldn't take much. I mean like we've, we've both
had experience like with the NHS and our kids and I like I, I
felt like I was going mental every time I went back.
I was like how? How would you still?
Why don't you read the notes? Yeah, I remember you said.
How how are you still not knowing what's going on here?
Like you're treating my child like he's typical.
It's and the other thing is like, do you know what?
It's not bothering Thomas. It's not bothering Thomas at
all. You can give a shit, but for the
parents that's still early on in the journey if you're a
physician of some description and you keep trying to talk to
the child. Who's non verbal?
Who's non verbal because it says so in his notes.
I get that some people would be like, well, no, that's polite.
That that is, you know, in society it's like, yeah, cool.
All right. When he doesn't respond for the
first time, stop trying. Because now you've got 2 parents
sat there who might really be struggling with this diagnosis.
They've now got to drag their kid in for an eye, eye
assessment, which isn't going to go well.
And it starts with you going hello, hello, hello, just like
shit like that. And that wouldn't take much
training. I agree with you.
I think it's a training issue, but it's not a lot of training.
I could knock that training out in 20 minutes.
Yeah, read the notes. Just read the notes.
Yeah, thank you for coming to my tech talk.
It would like be that quick. Yeah, absolutely.
OK. Why is there so little support
for parents after receiving an autism diagnosis?
We went on the early bird, I think it was called the early
bird course, which wouldn't call IT support, I'm not sure.
And it was like it was, it was on a Tuesday morning again, like
it was, it was, it was on a weekday on a Tuesday.
And I, fortunately I was, I was in a position I could just take,
take the time off work and you'd sit with other families and
learn a little bit about autism. But that was a few sessions
every few weeks, one day a week. That was all we did.
Don't get me wrong, it was fantastic, but that was it.
It was maybe 4 or five sessions. But as far as support's
concerned, well, there isn't any.
There's no like emotional support or psychological help or
anything like that. It's just Yep, your kids
autistic off your pop. That's literally what it was
like. Yeah.
There you go. Here's diagnosis.
Yeah, I remember going what's next?
Nothing. Nothing.
We've done our bit now you've got the diagnosis.
That's it, yeah. So again, I think that's another
funding issue. It's just not a priority.
Yeah, unfortunately there's no guide to this is that you learn
from. On the fly.
On the fly, speaking to other parents.
That's literally it, yeah. And then you pass it down to the
next group of parents that are going to be going down the same
journey that you found yourself on.
Yeah. Why aren't there enough
specialist schools and nurseries for children with high complex
needs, Andy? Why isn't there Georgia gold
money money is is simply it it's simply money.
They're they're. Very expensive.
I mean, we're spending a fortune on them now, and they're
privately held. They're very expensive early on.
Yeah, I think that's the key thing here.
Over the lifetime of the child, it could be better to actually
spend the money up front and have these specialist schools.
Absolutely would be, but because there's also different
departments, different budgets. Yeah, it's, it's a, it's an
investment, essentially. It's an investment early on so
that you're not having to pay for God knows what else for the
rest of the child's life. There are so many children who
are in mainstream schools that shouldn't be.
There's certainly going to be a lot of children in mainstream
specialist hubs that should be in specialist schools still.
It's just to see how. That they just won't fund it.
It's. Money, yeah.
There's no clever answer or intelligent answer to this.
It's that we won't fund it. Yeah, it's too expensive.
We can't take too much money out of the education budget and put
it in here because we need it for the other children who
rightly need education as well, but we can't do that.
Yeah, like, like a lot of this, it's a funding issue.
It depends how deep you want to go into it.
We're not going to get too critical, but even if there's a
lot, there's a lot of money that is wasted.
There is, yeah. There's a lot of money that's
spent, spent in other ways. There's a lot of money that goes
overseas, everything else like that, and you know, we're not
going to get into the politics of that, but.
Yeah, a lot of stuff that's going on at the moment, like I
hear figures being mentioned, like how much certain things
cost the UK on an annual basis. I hear stuff like that.
And I'm like, Oh my God, what you could do with that?
What you could do with that money for specialist kids, for
for disabled kids. There's no right or wrong answer
here, but in terms of facts, so much money will go to Ukraine
every year to to kind of assist with the conflict there.
Foreign aid. Yeah, foreign aid, but then you
go, OK, no problem at all. If we had a fraction of that,
could we open up a number of specialist schools and trained
individuals? The answer probably is yes, you
could do. But there doesn't seem to be a
need to do that or a desire to do that at the moment, no.
And we're. Spending and.
See what happens with this white paper?
Yeah, I can only see this kind of thing of, you know, what's
going on with the white paper and the proposed changes that
we've we've discussed at great length as being some sort of
experiment. And it's either going to work or
it's not going to work. If it doesn't work, they're
going to need to pivot very quickly, which is they're going
to have to build schools. That's the only other option
they have. After that is if it doesn't
work, they're going to have to build more specialist schools.
There's no other option. And it's not the sort of thing
that you can just go, hey, we're going to do a DIYSOS and we're
going to get loads of trades women.
We're going to we're going to build something.
No, it's it's not. And at the moment the government
doesn't seem to want to make that a priority.
And then again, you know, if you did start building, building
specialist schools, every town across the UK could do with one
or two. Yeah, yeah.
And still then it would probably reach capacity.
Yeah. But at the moment there's no
desire to well, we don't see the desire, no exactly as parents of
them going, you know they may be, but you know, living it life
to life you. Don't see it or feel it.
There's no evidence of it. Yeah, to parents of neurotypical
children and to the older generation, why do you feel the
need to refuse a diagnosis and call it bad parenting again or
keep telling us it wasn't the thing back in the day?
That's not what you said earlier.
Yeah. I don't know.
It's again, it's a lack of understanding as a lack of
understanding or willingness to educate themselves.
It's maybe refuses to accept. It's, it's just ignorance, isn't
it? At the end of the day, they're
just there are it's dinosaurs. They're like, it's yeah, it's
dinosaurs. They don't, they don't believe.
Well, they do believe a lot of things.
And, you know, certain generations just believe
everything they see on the news. It wasn't a thing back in that
thing really pisses me off. It wasn't a thing back in the
day. Do you know what I mean?
It's like, well, that doesn't mean it never.
Happened. It doesn't mean it didn't exist
You. Were you were building your
house out of fucking asbestos? We're not doing that anymore.
We've learned, haven't we? We've moved on, Yeah.
So please try and do the same. Do you know what I mean?
It's a really good example actually, Yeah.
What was the thing back in the day?
Building ages with asbestos. Yeah, and if a kid was naughty,
we just, we just get the cane out and just beat them with it
would beat the autism out of them.
It'd be absolutely fine. No, it doesn't work like that.
And that's why, you know, we look at stats like in the Prison
Service, not the Prison Service, but in terms of kind of people
that are locked up, a high proportion of them from a
neurodiverse background as well. So, yeah, it wasn't a thing back
in the day. Hey, ho, they've they're now in
prison. So yeah, win, win, win, win.
Win. OK, this send let's have a look
Why do dads feel they miss the most?
What What do dads feel they miss the most?
Having a neurodivergent child, for example, they may have
envisaged football games. How have they navigated that or
found alternative connections with their children?
That's a really good question from my mum.
That's a nice question from my mum.
She's asking, asking dads. I, I, I just missed that.
The it's, it's just the stuff you said earlier.
It's just that. The everyday the.
Everyday. Moments though, where's Daddy
everyone takes for granted. Like do you want to go do this?
Do you want to get like? Do you want to come?
Can we do some drawing together? Yeah.
Can I show you this? And don't get me wrong.
And it's like it's Skype, Christmas and stuff like that.
And yeah, exactly. But we get like, we get
different versions of that, you know, whether it's like Thomas
just leaning his head in or something like that, or pulling
me to spin him on his chair, you know, doesn't happen often.
But when it does, that's that, that, that's that thing I'm
missing. I miss.
And this again is I, I'm sad that I'm never going to have a
daughter. Like I'll never like, I just
really wanted to have a daughter who's just wanted to experience
the Daddy dawn. And obviously you're going to
choose what kids what you're going to get.
But it makes me a bit sad sometimes that that I feel
guilty saying it, like Thomas's autism has stopped me trying to
have another child through fear of making Thomas's life worse or
us having doubled the workload within autism, you know?
But it's true. That's just the way it is.
So there's that as well. It's not really what they're
asking, but that's that's kind of what I miss.
Yeah, my, the everyday stuff, isn't it?
Yeah, you know. Marriage as well, like like her
getting married and the whole dad aspect of that.
Is that something? Yeah, yeah, that's, that's,
that's kind of gone, you know, things like younger getting into
sports, you know, you know, we'll take it, you know, oh, we
might, she might be a gymnast or, you know, we'll take her to
some sort of dance lesson. Now that's that's not happening
at the moment or even as simple as, oh, what character is she
going to be in the nativity play?
We ain't doing that. We're not going to do a
Christmas nativity play. We're not going to see them
rehearse their lines for a a short story or, you know, have
her do her through a bit of creative writing.
And I've done a poem at school today.
This is the poem or or I've done this, or oh, that's lovely, or,
you know, put. Pictures on the fridge and.
All that, all this sort of stuff or Dad, I'd love an ice cream.
I'm, I'm, I've had to accept that's not going to happen.
Yeah, Go on holiday. Oh, yeah, we're going to get an
ice cream, build sandcastles and we're going to bury Dad and none
of that. That's not happening.
No, yeah, it's it is normally just the day-to-day stuff.
Isn't it? It's just the normal, everyday,
mundane stuff that everyone take, like you said before
having a child. Cut to go.
Go and tie my shoe later. Or me.
Yeah, that's not happening. No.
All the stuff everybody else takes a great thanks for
granted. For granted.
Or your kid coming in, going, I'm thirsty, have a glass of
water. Yeah, that's not happening.
Yeah. Just everyday stuff that people
take for granted. Read me a story.
Waiting up for Santa on like. You know, oh, yeah, there's
nothing. There's nothing there.
You just unfortunately just get accustomed to it.
Yeah, go. It's weird, isn't?
It Yeah. It's weird that you come
accustomed to something that's so sad.
Yeah. Because it's really sad, but you
just, you just go like, Oh well. What's the point of me devoting
too much time in thinking about it?
That's probably why we're a bit stumped sometimes when the
question comes up, because we're forced to now address it and
think about it, yes. Thanks for that.
Thanks for that one. Yeah, only joking.
How can I best support my part? Oh this is good.
Oh we're going to give him a shout out.
How can I best support my partner as a step mum in his
nine year old autistic son with high care needs?
Especially as we're getting married next year and want to
include him in the day without overwhelming him.
That's a nice question. That's a really nice question.
It's have I skipped one? I missed one.
Oh no. That's one it's it's great that
you've been thinking like. That that's really nice.
That's that's really good, especially if a step parent
stepping into this this crazy world.
Yeah, because that's a big deal. Like, shout out to all the step
parents. Yeah, because how can I word
this without sounding like a twat?
When you if you're a single parent with a child with
additional needs, like it or not, that's baggage, right?
For lack of a better word, that's baggage.
That is that's a big deal for someone else to take on board.
Even if you take on board another child, just a normal,
typical child, that's a big deal.
But if if a step parent who loves you to death and they love
your kid who's got additional needs and and they I say take
that on, it sounds like it sounds like a negative, but if
they're doing that, like man, they love you.
Yeah, absolutely. They love, you know, if a
neurotypical, you know, partner has kids anyway, you know, it's,
it's, it's a challenge at the best of times and you know, you
can get it right at times. You can, it goes wrong at times
and then it kind of balances out, you know, blending families
and all this sort of stuff is, is, is, is difficult, but
there's usually the knowledge at some point they'll turn 18, be
an adult. And it's a lot easier then
because they're not in their life, you know, day in, day out
sort of thing. You're, you're stepping in
toward where there's going to be a child that's going to require
lifelong care, then that that you're not just taking that
person on, you're taking on, you know that that child as well.
So that that is, you know, hats off to anybody that that puts
themselves into that situation in terms of how you support
them. Yeah, I mean, you're probably
already doing it. By asking that sort of question.
I mean, you're probably, I hope you're really doing it because
you're getting married next year.
So I'm guessing you've been together for a while and you
didn't meet him last week. Yeah, and you won't even include
him in the day again. That's awesome without
overwhelming him. That's hard to, I mean, I don't
know the profundity of the autism, but it's awesome that
you're getting him involved. I think it's a great idea to get
him involved. Just work out just between the
two of them. Just work out whatever you think
is the the right amount of involvement.
Yeah, hopefully there's, there's kind of other family members
there that will step in or, you know, if the day gets or it's,
we agree that they'll be there for an hour, 2 hours exactly.
Once we get to the meal bit then we, we may include them in the
meal again. It might be, oh, we've got to
have them make sure we've got favourite foods there for the
meal. And then on your speech.
Speeches what may be different because, you know, we don't have
too much laughing and you know, oh, there's so many different
things depending on the child. But yeah, sounds like you're
already asking the right. Question, I mean, hi Kenny.
So I'm, I'm going to guess then non verbal.
Otherwise, if they are verbal, yeah, by some rare chance
they're high care needs, but they're but they are verbal.
Just can you ask them? Can you say like we'd really
love you to be involved, but what you or do you want to do?
Pressure on the child, don't be pressure on yourselves for it to
go a certain way again, even if the child's only there and
they're not even taking the service in, but you want them to
be there and they're just playing with fidget toys or
whatever the case may be or, you know, stimming or whatever
works. Yeah, I think at the end of the
day and you may because. As we know with with Arcade, you
may put a plan in place that you think that's going to work now
three months time. Yep, that's the plan we're going
to stick to. On the day.
It can be completely different. Yeah, even even in in a
completely just normal wedding, just full of typical people, it
usually never goes to plan anyway.
Yeah. And and just what you're doing
now, just keep, keep being thoughtful like that.
Yeah, I think. Oh mate, you the fact she asked
that question I. Think you just just keep being
that individual and I'm, if you're that sort of person,
you're asking these sort of questions, then I think you're
already doing enough to support your partner and, and hopefully
they recognise that as well and I'm sure they do.
Definitely last one. Final question, as a mum I build
a network of friends within the Sen commute parent community but
this has been a struggle for my husband.
Any tips? Yeah, if you just tell your
husband to join the Autism Dad Cast Discord, Facebook group,
Instagram, follow us on YouTube and Spotify and just drop loads
of comments in, that'd be great. No seriously, just again, find,
find a tribe. It's going to be difficult with
with kind of men because they don't like talking much.
I think for me, early on as well, going back, not to harp on
about this running thing, but I felt a bit useless at the start
because I didn't have anybody to tap into.
So my way of feeling like I was being proactive or kind of
accepting it was I'd signed up and did a 10K run, then a, you
know, just for autism because I had nobody I could share it
with, but I wanted to feel like. You're doing something I.
Was doing something so I was like, I'm fundraising for this
and then people were like, oh, you're doing a really good
'cause and everything else like that.
And then it's just, yeah, unfortunately you're going to
have to put yourself out there a little bit.
Unless BIOS and weird coincidence, your best mate
somebody has a child that's autistic as well.
But he's probably given him space to get his head round it.
And I don't know how how old the child's been is.
And at some point he's he's got to just.
And where she where she said it's been a struggle.
Does she mean he's trying and struggling or does she mean he's
just struggling with the whole thing?
With the whole thing? Yeah.
Like if he does want people to speak to, there's there's so
many, there's, there's so many people that he can speak to.
There's groups all over the place, There's ours, but there's
loads of others on Facebook as well.
But yeah, again, it's whether he wants to speak to anyone or not.
Yeah, it's whether, you know, she's OK because she's got this
network and he's just struggling on his.
Own again, this is the other thing, isn't it, that, that mums
are very good at having Sen network, Sen networks and
they're very proactive on there. Whereas dads are historically
pretty, pretty bad at that side of things.
Unless we find a group of dads who are, you know, still have
the same dark humour and you're still not, you're not going to
get treated with gig gloves. You're still going to have the
the piss ripped out of you and everything else like that.
You're not going to be made to feel special, but you're with
dads. I absolutely get it.
Yeah. But yeah, it's fine in that
group. For that one, just like get him
to send us a message if he wants to and you know, we'll talk to
him. Same goes for anybody.
Anybody that wants, wants to get in touch because they're
struggling on their own. Communities are getting bigger
and bigger. It's free and it's just a load
of people just chatting and sharing stories, horror stories
as well. Sometimes.
That's it mate. Cool.
That was good. I enjoyed that, Yeah.
Lots of questions from the mums, not a surprise there.
Yeah, what was interesting was the mums questions were how can
I get my dad, the dad on? Board, Yeah, yeah, yeah, I
support. That's a lot of that.
Why they're useless? Yeah, again, that's because
women are naturally more nurturing, more kind of caring
and empathetic in that way. So again, the problem is not
only they trying to nurture their child, they're also trying
to do something similar for their partner who in an enormous
situation, the partner would be there with them.
And it sounds a bit harsh, but it it does come a point where as
a bloke you just got to go mate. Just get a grip now.
You've got to accept this for everyone's sake and your own.
And it's difficult when your mates aren't living it.
Oh, absolutely. Because they won't say that to
you, though if you if your mates have got no to your kids, they
won't go to you. They go, Oh yeah, they'll be
like that. If you are within a network of
dads that are going through something similar or a couple of
years ahead of you and they can they go.
I recognise that that was me at this moment.
Go over it and then just buckle up because you need to get on
board pretty sharpish and this isn't about you anymore, but
have your moment, have your little cry, have your little
wow, the world's so hard. Why is it me?
What have I done wrong to deserve this?
All right, it's happened. And you're not going to take
that off mates with with a. No, you won't, because you'd be
like, you don't understand, you don't know what it's like.
Why are you telling me this? If you've got dads that have
already gone through there, they'll just go and.
They're telling you to wind your neck in.
Wind your bloody neck in now and stop it.
Yeah, right. It's done.
Yeah. You're not going to change a
child now. No.
Get on with it. Yeah.
And yeah, you've got to be rats surrounded by people that
understand it and, and and can, can say that to you.
But that was, yeah, that was nice because most of the mums
were, yeah, still thinking about other people.
Other people. Which was what mums do.
Yeah, because they're bloody awesome.
I. Know OK mate, I enjoyed that was
good. Really good.
Fucking hell, how long was it? Yeah, pretty long.
Holy shit. Yeah, not as long as London
Marathon, but. Why did you have to say?
That that's all I think about that.
All right, mate. Thank you very much.
Absolutely pleasure. Guys love you loads.
Follow us everywhere. Thank you.
See you soon. Take care, Bye bye, bye bye.