Hello, mate. Hello.
How's it going? I've.
Realised that's like like an intro really shit intro but
hello mate. It's a classic intro.
Classic can't not do. It goes straight to the core of
the issue. Episode 26?
Absolutely mate, we've got so much to talk about.
I'm looking forward to this. I'm absolutely fired.
Me too. I'm fired up for this one.
Fired up mate, I just got Andy when he was on his way here he
did a little voice note. Yeah, very excited, Very
excited. Yeah, I'm on my way,
motherfucker. I'm listening to Iron Maiden.
Listening to Iron Maiden. Let's go.
Let's have it. In the words of Delia Smith the
hooligan, let's be having you. Delia Smith, the hooligan,
right? OK, it's been a bit of a mental
week. Been a crazy week.
Wednesday. It was Wednesday, wasn't it?
It was. Wednesday OK Wednesday morning
Hidden 20% podcast with Ben and Phoebe.
Amazing. How cool are they?
Absolutely superb, absolutely superb.
If you haven't checked it out, search hidden 20%.
You'll probably recognise the green dot badge that they have.
But yeah, all about the neuro diversity community, wherever
you fit in there, 20% because 20% of the population as it
stands. As it stands.
Because neuro diverse, but Ben said.
Ben was suggesting it might actually be, did you say 30%?
It could be as high, Yeah, it could be.
I think they're they're, they're doing a study into it.
Mental. Not surprising though.
Yeah, not surprising at all. So we went down there.
They were lovely. Took a few pointers away from
from their podcast. Their professional setup that we
don't, we don't have, which is off the cuff.
Not this living room, yeah. So yeah, really nice guy, really
nice guys for them. Phoebe, she is on the ball.
Massively, We were on the ball because we turned up the
location, turned up at a studio. Lady let us in, said well, we're
here for the this particular student.
Yeah, no problem at all. Come upstairs.
We went upstairs, sat in the kitchenette.
Offered a coffee. Would you like a coffee jam?
And yeah, no, it's fine. We'll just sit here and warm
ourselves up, watch the TV for a bit, only to find out it's the
wrong fucking studio. Yeah, it.
Wasn't even the right place. It was a music studio.
And to be fair to us, yeah, we were stood at the door trying to
figure it out. Yeah.
And the buzzer went off on the door and we were like, oh,
someone's letting us in. And it wasn't.
It was that Lady had it on a remote.
We told her what the studio was. Yeah, that's it.
It's up here. Up.
So, you know, we thought we were in the right place and we
weren't. But anyway, their studio,
really, really cool place, real nice set up, and they were just
both. He's good at interviewing,
Benny's very good, very good. And that's the first time that
we've kind of been on the receiving end.
Doing anything long form. Obviously we did the BBC, but
that was just way more free flow.
He's just shit hot at asking questions and it it didn't feel
like an interview, it felt like a conversation.
It was 3 dads having a good chat.
It was just so easy. So we did that in the morning
and then we had some time to kill.
Yeah, so we just kind of had a bit of a mooch around London.
Yeah, yeah, Did what all the cool cats do.
Sat in a cafe with Macbooks out, pretending we were working like
we were important. Watching YouTube videos.
So yeah, we did. That killed some time, and then
we went to the Department of Education.
As you do, as you do. Yeah, absolutely fortunate
enough to be asked to attend the national SEND conversation.
I think it was the final one in the series they were doing and
it was about effectiveness. Yeah.
So, yeah, you know, we said at the time and I, we put a post up
afterwards with Minister for Schools George Gould saying, you
know, regardless of what your political belief, it's a
privilege to actually be invited down to have a discussion about
this. And, you know, we like to think
that in a tiny, tiny way, you may have a bit of an influence
in what's happening. And I know a lot of people
probably think it's already done and dusted.
This is kind of a lip service kind of motion to to gather
support. Again, we don't know the answer
to that. All we can do is turn up.
And it's our waste of expectation.
First and foremost, like everybody else who listens to
this, we're parents. We're parents or children with
profound disabilities and that now have a following.
So we're going in there as a, you know, the pair of us as
fathers, but also that weight of expectation, that and
responsibility that we are representing a whole community
of other parents that feel exactly the same as us.
Yeah, and the I was feeling the pressure.
I was feeling the pressure not not to say the right thing, but
just to make sure. And I know you were doing the
same. I mean, admittedly, going in, I
was thinking the same thing. Most people are written that
that most people are thinking is that the white paper's already
written. Again, it might be.
We don't know we're. Not Privy to that we.
Don't know but we met Georgia, really liked her.
Yeah, I've, I've, I've got to say.
From a From a personable. Kind of a 1 to 1, you know,
let's, let's, let's take the politics bullshit out of this.
Yeah, if I met, if I. Just met if I, if you here's
someone called Georgie, you met her fantastic, but you know,
gone well, no problem at all. And obviously what people saw
was what is in the hour conversation.
Obviously we have a discussion beforehand and she was kind
enough to carry on the discussion off camera.
That surprised me. Which surprised me because I
thought I rushed these people out.
If it was me, I'd be like, get rid of these people immediately.
But no, she was happy to to kind of keep that going, which is
which is nice. But again, from my point of
view, I'm at the age now where I really don't give a shit which
political party it is. I'm, you know, my sole focus is
literally my daughter. And yours will be the same with
Thomas. I'm sure a lot of people
listening here will be going. Yeah, it's about my child.
I will literally probably nowadays vote for the party
that's going to give my daughter the best opportunities to reach
over a fulfilment or potential, whatever you want to call it.
Yeah, we, we said that last week.
Essentially it's policy now is, is, is what these guys run on
and it's all about picking out the policies that going to get
your host the votes. Unfortunately, that's just the
way it works because people vote on what's important to them.
If reform ended up coming out with the best send policy in the
world, they get my vote. A. 100 percent, 100% if they, if
they came out and said, you know what, our number one objective
is ensuring that send kids get exactly what they need.
We're going to make sure there's 100%, you know, whatever the
budget needs to be. Our aim is that we turn this
into a world leading country that specialises in in ensuring
these children get, I'd be like, right.
Cool. Here's my vote.
And that's, that's the way I look at it because everything
else, you know, oh, you know, taxes have to go up for this.
You're going to have to work a bit harder.
I'll do that. I'll take that shoulder and I'll
do that because I have the capability to do that.
My daughter doesn't. So I'll shoulder all that sort
of shit to ensure that whoever's in power looks after my kid.
Yeah, and that's that's how everyone votes.
They vote on what's important to them and that's why most of the
people in this community would vote whatever they need to vote
on the send issues. So we obviously put our
questions in. Yep.
And I suppose the format, we should probably explain the
format because a lot of people after were saying we were
watching this live. We couldn't get our questions
in. And from the sands of things,
there's each one of these had quite a few thousand people
watch it. And the questions that come
through were just literally every second there's Bang, Bang,
bang question that that comes through.
And there's no way you can address that in an hour.
Absolutely not. Absolutely not.
So the format is, yeah, we're selected.
We spoke to the community, said what are the key issues here.
We try to formulate those into two key questions because that's
what we've got allocated to us. And those are the questions that
we we kind of put there. Obviously, you managed to get
that last question in about the HCP legal backstop, which I
think was appreciated by many people, but that's kind of a
form and you've got to bear in mind it's an hour US 2, two
other guests, should I call them?
Yeah. Well, experts on there, Dave,
you couldn't make it. He was on the screen and then
the questions that the questions that are asked from the from the
people watching. So that hour goes really, really
quick. It did flew by.
It goes really, really quick. Because you see the votes coming
in dating on the screen. We saw those come through a
little. Bit why those votes are and why
we think the votes have gone the way they have.
Nothing was surprising in it. I mean, there's nothing
surprising at all. I mean, I understand the
frustration from the community 100% because the issues that
really matter weren't discussed until a girl called Layla sent
the message in asking about EHCP.
Now it may well have been discussed on the previous ones.
I wasn't there. I've not seen them.
In fact, I can't find them online to watch them.
We couldn't find the one that we want to watch that either.
But it's the question that keeps coming up because it's the it's
the one that worries people the most is these children that are
in mainstream schools who fear losing the EHCP.
And if they lose the EHCPI think most of them would go cool as
long as whatever replaces it is as good or better and still has
that legal backstop that everyone.
Knows, I think that's the key thing is like, even if the EA at
the moment, from from a parent's point of view, and I'll speak
personally, but I know a lot of people would think this as well
from a parent's point of view, the EHCP may not be the best
thing in the world, right. It's it's, it's got it's fault
everything else like that. But you know, it's the only
thing we do have. Yeah, at the moment, yeah.
You take that away, what happens?
What happens to every single family?
Where do we go? Where's the accountability side
of things there? So we're almost like, do you
know what, it might not be working, but because there's so
much uncertainty, we're not getting the information that we
need. I'd rather hold on to the thing
that I know does exist because the uncertainty of of knowing if
if it's something's going to come through which is worse.
Yeah. They must not come through.
That's even better. But they haven't told us.
But because we don't know and there's so much uncertainty and
our lives are governed by so much fucking crap that we have
to deal with, we're very much like, well, I'm going to hold on
to this for the time being. And with your questionnaire, we
saw some of the comments afterwards.
Every time that question is kind of battered away, it feeds into
that kind of, you know, self preservation thing that we all
have going. Why aren't you just saying what?
Why won't you just say, we're still looking at it, we haven't
got any decision. Why are you kind of and that?
Or, or why aren't you saying, yeah, it's going and no, there
won't be a legal backstop or framework around it.
If that just say it because I'm really open that whatever does
come out, I I don't know why the I don't know why that's the one
thing they won't answer. That's the thing that's screw in
my head. Like just saying I'm not going
to answer that. I'm sure they have a reason, I'm
sure she has a reason. I just wish I knew what that
reason. Was as do millions of other
fans. Very much just get shut down
now, like you just said. After that conversation, I was
surprised that Georgia continued to say, Gaz, can you can we talk
about that again? I was like, holy shit, OK, this,
you know, like you said, it could have been get these guys
out of the building. It wasn't she.
She continued to want to have a dialogue about it.
Still didn't get an answer, of course, but I appreciated the
dialogue. And what really surprised me was
that she made the suggestion about coming on the podcast to
have more of a long form conversation.
And this wasn't us pushing it at all.
No, I wouldn't have even. I wouldn't have even tried
because I just assumed she'd say no.
So when the suggestion came from her side, I was like, oh, OK,
yeah, that really impressed me because a long form conversation
with a politician that's that's a place that not a lot of people
want to put themselves. And it's also it could be quite
an uncomfortable place to put yourself.
Which is why they don't want to do it.
Yeah, that's what. I mean, so we, we initially had
our train journey back to London and back to to Shropshire.
And it was very much, that was very interesting that she said
that and thinking, well, was it just kind of being polite?
The following day we had a e-mail from her team with
various other bodies cut into it saying the minister would like
to come on and do a podcast, suggest times and dates.
And then the following day, I think it was a, a media manager
from the department had a teams call with us to discuss it
further. So I'd like it.
I mean, I, I think for that for everything everybody thinks and
I totally understand why they think it because I think it, but
credit where it's due. So for that, I'm like, OK,
that's that. That's something you didn't have
to do. You didn't have to suggest.
And there will be a lot of people going, you know that.
And I get this as well because I'm, I'm like this with certain
politicians is like straight away I'm like, Nah, you're a so
and so. Pharmacy.
Even without, even without knowing anything about them,
I'll be like, no, you're, you're a so and so.
But the important thing is it's all very well us sitting on the
sidelines casting judgement and like making assumptions.
It's much better to be having some form of dialogue.
Keep the door open. Keep the door open so we can get
points across. We can the common themes that
are coming out with the community and what people are
really stressed about, really worried about in the hope that
it is taken on board and it is listened to and more
importantly, it's acted upon. And I think that's what we need
to to keep in in mind. And I know there are a few
comments after you asked your question.
It appeared that some people said Georgia was laughing in
her. I had to watch that back.
I watched it back a couple of times because I didn't remember
her laughing in the room it it was very much a nervous.
It felt like awkward to me. It felt like a a bit of a
nervous. I do not for a second think that
that she was laughing at anyone's situations, like at
all. Absolutely not.
It it did feel like maybe a bit of a nervous, oh, God, this is
another question I can't answer. Yeah, and it was, I mean, for
the last bit, it was like, we've got 6 minutes.
Has anyone else got questions they want to ask?
And I thought, oh, brilliant, because that that question from
Layla, there was kind of parts to it.
And that was the one part that wasn't answered.
Or if it had been, I even said to her, if you have answered
this, I apologise. I just want to make sure it's
clear because I don't remember getting an answer for that part
of the question. So I was just really glad we had
the opportunity to get, get that in.
But All in all, I thought it was a positive thing just because I
think the doors open. It's remained open.
Yeah. And.
And that could only be a good thing for further conversations
down the road. Yeah.
What they're not going to do is leave the door open to people
that are just giving him a hard time giving him shit.
Well, if there's no benefit to it, exactly why would you not?
I'd be the same in every aspect of my life.
Instead of dealing with kind of business or people, if they were
going to act like that, I'd just be, well, there's no, there's no
commonality about this. Why should we engage in any form
of dialogue? It won't be constructive.
So it's kind of bearing that in mind.
But at the same time, we all share the same frustrations, but
we have to try and check them for the time being, yeah.
Walking a fine line. It is walking a fine line.
It may be the case that the white paper comes out and then
we go, well, it's out now. It isn't what we were expecting,
No. And then we can go hammer and
tongue. Yeah.
Or it's not what we were expecting and it's actually
great. Yeah, no, that would be even
better. Because we're not expecting,
yeah. That would be even better
expected to be positive. I'd love that to be the case.
But again, that's that self preservation thing is we're kind
of expecting it to be awful because when it does, if it does
come out and it's awful, it's kind of hit our expectations.
It's a difficult one. We talk about the weight of
responsibility and we're only a tiny minute part of this
community doing what we do. And I felt the weight
responsibility going in there to make sure that we we do get our
points across there from her point of view as well.
You've got the weight and responsibility of millions of
families across this country. And not just that, you've got
the weight and responsibility of all those parents that are going
to have children in the future that don't even know they're
going to have kids that are in this system.
So you have the opportunity to go down and I'm going to say
history, but you know what I mean?
You've got the opportunity to go down in history as somebody that
made a huge difference to these families and that will be
acknowledged, that will be received.
On the flip side of that, you could be that politician that
your name is just, I don't want to hear it.
I don't. And we all know a certain Prime
Minister where certain people can't hear her name.
And it's, I'm not saying it's to that extent, but to those
families, it means that much. It absolutely means that much.
You either get it right, do it properly, or you just.
And even just, and we were there like we have no clue where it's
going. Like we were, as you know from
from the position we were in as civilians, I suppose we were as
close as you could get to the answers and we still don't know
what's going to happen. But that that that
accountability about legal rights.
That's the big. Bit well, accountability about
legal rights, but I that's fucking meaningless.
I even said to yeah, because it's not accountability.
It's not accountability, is it I?
Even said to it, like when I asked that question, I said
like, you know, like the EHCP does.
And then I said, well, well, actually the EHCP isn't doing it
now. Yeah.
I mean, yes, there's a legal backstop to it and there is a
legal framework around it, but still no one getting held to
account. Yeah, that's it.
When it goes wrong? When it goes wrong about what,
80% of the time, yeah. So, yeah, we're all asking for a
legal framework. Well, we've already got one and
it's not working well. It's it's what's it like?
It's like putting up, you know, putting up speed limits on the
on the roads, but then having no police to check it.
Yeah, yeah, it'd be like, well, what's the point of it?
It's just a sign. It means absolutely nothing.
And it could be the exactly the same.
Well, whatever comes in, if they do replete place EHCPS,
whatever, whatever they're going to do if there's no
accountability attached to it, No, what is the point?
Bet again, to your point earlier, we're just holding on
to this. Yeah, we are.
It's all we've got. So yeah, OK, if it's kind of
pointless at the minute because yeah, there's a legal framework
around it and non's doing Jack shit.
Well, at least there's a legal framework.
We just need people to do shit to fucking to defend it.
But yeah, it's yeah, it's it's weird when you get to when you
get to meet them in person. And I didn't get any bullshit
politician. I've met a few politicians and
didn't get that vibe offer. No, I didn't.
Get it? I know what you mean.
Yeah, there's an air about. You can just.
I didn't get that at all. Your spider sensors are on it.
Yeah, And maybe I'm being naive. I just.
I didn't feel it. No.
And that made me go, OK, all right, because I was a cynic
going in. We both were.
We bought. We walked in there very cynical.
And I walked outgoing. OK, all right, let's see where
this goes. But we don't.
We'll have to wait and see. And hopefully we'll get her on
before the white paper is released.
And maybe after. Maybe after, that'd be great.
Do both. I think after might be a more
difficult conversation for her potentially because there's
going to be a lot of questions. Again, I'm assuming the worst.
If she knows it's going to be great, come on after.
It'd be amazing. All you'll be getting is
everyone singing you praises. Well, this is it.
This is absolutely it. But there's like, again, the
messages coming through regarding this and where is it
We've had so many again, I mean, we talk about that we're
fortunate in in only in this sense when it comes to
educational settings and, and, and kind of that framework is
that because our kids are profoundly.
Yeah, they're not going. To be autistic, they're EHCP
safe. That's off the table.
So we could have gone hard. You know what?
Great, that's us done. But there are so many families
out there who, you know, we called them the send betweeners
that are in mainstream school, they'd have an EHCP which does
help them to a certain degree and gives them that kind of
extra assistance. But then like I've had a message
today and I can't get my fucking head around this.
That and a family to get their kid the placement they needed
£55,000. Where did that come through?
Remortgage their fucking house to get the kid the placement
they needed and support was. That was that.
Instagram, that's on Facebook that.
Was Facebook. That's Facebook today and Karen,
if you're watching this, you saw you saw the the one hour session
that we did to get her child the help they needed.
We had to remortgage our house £55,000.
What fucking country are we living in to get the support you
need for your child, even though there is a framework in place at
the moment, you've got to remortgage your house.
Is there a kid assembetweener? Assembetweener Assembetweener.
And some people don't know use to mortgage.
It's disgusting that they had to do that in the first place.
You work your ass off to get to where you are and you want to
get your child the education they deserve.
That's 55. We had another person last week,
30,000. Pounds.
Sorry, what fucking parents? Yeah.
Oh my God, that's like. Absolutely.
You. You.
Disgusting that they had to but. Disgusting that you had to, but
honestly, I don't know if it's just you, Karen or your family
as well, but you stand tall. You stand tall.
But how on earth we get to the situation where we now go, any
spare money you've got, you've got to sink into this as if we
don't have enough to do on a day-to-day basis.
Now you're going to put yourself through financial stress on top
of everything else to get your kid what they deserve.
And again, no, you kind of touched about it there.
Obviously you haven't got a house to remortgage.
We don't have the financial means to do that.
Obviously your child, we're going to start going into this
pattern where. And that's where actually most
people are in this in between us.
Yeah, that's where most of them are, so.
This is why families, parents, they get so invested in this
because it's the absolute everything to them.
And that's why I'm trying to go back to you like you have the
opportunity to, to kind of get this right and do the right
thing for families. Or is it, as some of the cynical
people will say, well, the reform is just another word for
we're we're we're spunking too much money at the wall.
We need to bring it back a little bit, let's call it
reform, change things and we'll have to, we can offset the cost
a bit more. And that sounds crazy if you're
listening in, but that is what a lot of families think this is
about. Yeah, it comes down to
expenditure or miss expenditure. 55 grand. £55,000 and I bet you
now what's? That on What's the 55 grand on?
Legal, OH. Fuck yeah.
Legal. Probably because.
They would have loved that. Yeah, the barristers would have
been absolutely loving that. I mean the fact that there's an
industry built around. This about that one on fucking
longer than it needed to. Yeah, of course it will do.
Yeah, I'm sure that local authorities like to drag it out
in the hope that people just go. I've run out of money.
Yeah, and the barrister doesn't, and Legal Aid love dragging it
out because they keep getting paid for every time they rock
up. They get paid for every fucking.
E-mail they get absolutely. And we've had this good
conversation about tribunals. We even said it off camera to to
Georgia as well, that the impression a lot of people have
and from their personal experiences is that we'll put
you through tribunal. Oh, we said that on the call.
Yeah, that's on the. Call, we said we'll put you
through to tribunal and it works out cheaper for the local
authority to incur those legal costs than put the kid into a
placement. Yeah, absolutely, absolutely.
Again, with very little thought gone to the effect that this has
on the family and the child in question.
No, I'm not sure there's any thought.
I think it's purely just financial decisions, isn't it?
That's all it is. I think it is.
And it's very easy to do when you're sat behind the screen
sending those emails out. Yeah.
Or maybe get off your ass, see these families, spend some time
with them, see what they're going through day-to-day, and
take it back with you. But that is fucking ridiculous.
And that's one person, and I bet I know you've said this Exactly.
We're going to get inundated with families going.
This is how much we've had to do.
Yeah. This is the sacrifices that
we've had to make. I've had to give up my job.
I now stay at home. All my dreams for myself and my
career gone. Yeah.
And then we have to think about this until the day we die.
Yeah. It's fucked.
So that's why people. United Kingdom What?
The fuck? Yeah.
Greatest country in the world. I know, Yeah.
OK. Anything else on that?
I think that's probably enough of this rent.
Cool God. I think so.
OK, next bit, the fun bit, Stemming whistle.
Stemming whistle.
Well, actually, because there's the stemming.
We should probably explain this. We should explain this.
Really. Yeah, absolutely.
OK, in 30 seconds go. We have two communities.
No, we don't. We have one community.
It's a Discord Alters and Dadcast community.
Yeah, inside that community is a free bit, which is probably
where most of the, that's where most of the information
interaction is. And then there's a little bit
and the little bit is called the Stem and Whistle.
And that's the pub, that's the virtual pub.
Now, the Stem and Whistle, it's £4 a month, pound a week, 13 PA
day. If you want to be a part of the
community and you also want to be a part of that, that's the
£4. Essentially what you get for
that is Saturday night lock insurance, Lock insurance.
It was a lock in. It was a lock.
In it went up for 2 1/2 hours. Yeah, you were.
Basically you're sitting on a video chat with a shit load of
people and we're all just drinking if you want to drink
and just chatting. Or for some people they're just
sitting there and listening. Yeah, some people are very
comfortable or, you know, to sit back and listen.
Some people, you know, yeah, probably have anxiety and are a
bit shy because they haven't been able to communicate with
anybody about this sort of stuff.
So it's basically because we don't get to go out very often
anymore, or it's difficult to get babysitters and you just
feel a little bit isolated and you don't have people that
absolutely get what it's like. We thought, you know what, it'd
be great to have a pub, but we can't go to a pub.
So we create a virtual one and you can sit there, put your
camera on, leave your camera off, joining the conversation,
listening and just chew the fat, have a good crack, have a bit of
a laugh. And yeah, it was a bit of a slow
start. Everyone was, everyone was very
kind of like, oh, I don't, or who's going to speak first?
Sorry, I need to give a shout out to Zoe.
I've got to give a shout out to Zoe.
She lied to us.
To be fair, Zoe's probably the reason everybody started fucking
talking. Yeah, she said.
She was shy. She said she was shy.
She is not shy. She's not.
She was the life of the party, but I'm grateful because she was
so much the life of the party. Everybody else talking.
She was making everyone laugh and everyone else was talking
and then it just it was just in free flow.
So stim and whistle. Couple of rooms in there.
As we get more people, we're going to put more live rooms.
There's a games room in there. There's a smaller video room.
It's a little bit more intimate. There's like a maximum of four
people. If you want to sit in there and
just have a bit more of a private chat, you can go in
there also. This is a really good point.
Yes, we do have these events where weekly we're going to be
in there, but you can go in there whenever you like.
If any of you just want to go in there and sit in the video and
chat with each other. We're going to build this.
We ain't stopping. We're going to, we're going to
build this up. So if you, if you're a part of
the stem and whistle, you know, you can just pop in there like
any other pub at any point. And if there's someone that sees
you in there, they'll join in and you can have a, you know, a
chat with a stranger or somebody you've you've kind of had a chat
with before. And that's it.
Actually, just by being in the room, if you look down you can
see if there's anyone in there and.
Just pop in and jump in and we'll do our best to get in
there where we can. But going back to the.
The free bits that. The free bit is the discord
right? That's been going crazy today.
And that is, that is growing very, very quickly actually.
And that's where you go. You can introduce yourself, tell
people about you know what your story is and so, but everybody's
responding, interacting with everybody, which is great You
can go there there's a section for sharing wins.
You know how to deal with forms, fighting the forms, everything
else like that. So we've got a page on that
we've created ADHD 1A non verbal 11 about mobility, sleep, PDA,
ARFID. There's a resources page that is
getting updated constantly and there's.
Carl. Shout out to Carl.
Carl who's looking after that and one of the dads and my
favourite the night shift. So if you if you are awake at
1:00 AM, there's a dedicated room for on the Discord to go
there. So yeah basically you know we've
got this Instagram community which is growing we've started
focus on Facebook over the last couple of weeks, which is has
grown 666000 over the weekend, which is a bit nuts TikTok and
everything else like that. But we wanted something else
where we can have like information for everybody to
kind of dabble into, and then this kind of social aspect where
you can join in at the stemming whistle.
Exactly, and if you don't want to join the stemming whistle,
there is a shit load of rooms, shit load of people to talk to
and they've all been amazing. Yeah, like we, we, we just my.
Phone's going Ding Ding Ding, everyone's just talking to each
other, sharing, giving help and it's just if you don't want to
pay the £4 there's a shit load of value in the free bit.
Yeah, absolutely. If I'd add this when Thomas was
like 18 months old. Yeah.
And that's exactly why we've done this.
We've been listening to what everyone's been saying.
We want to kind of create the autism diecast so we have as
much available to anybody that's going through the same thing
that we've been through or was going through.
Just have all that information resources there and just really
hammer the point that this is a community.
Yeah, that we are, you know, no matter where you are in this
country. Again, worldwide, we've got
people in the States, Australia, New Zealand messaging US,
Canada, Zambia, Zambia, obviously big in Zambia now,
Malta, as well as Malta, UAE. You know, this is the one thing
that unites everybody. Yeah.
And we've said this many, many times before, it doesn't matter
what job you have, what background you have, where you
live in the world. We all had the same hopes and
dreams for our kids. We all had the same kind of
expectation of what that child was going to be like.
And this thing just unifies every single one of us because
then we just go through. Oh, right.
Yeah, yeah. That that's the that's the thing
that really stands out is that we've had conversations with
people that I'm not going to name drop or anything, but we've
had conversations with people that have pretty affluent.
They're doing OK, but it doesn't change as sausage.
They're in exactly the same emotional turmoil than the rest
of us are in. And that's where it kind of
just, it evens the playing field, as it were.
So when did it go up? It went up on Saturday.
Saturday we pushed it out. Yeah, I was busy fixing any
teething problems. Yeah, I was on the website.
Yeah. Oh yeah, we have a website now.
Yeah, we have a website. So if you do want to join, it's
free, just drop in. There's links all over the
place. Go to the the link tree.
You'll find the the link in there.
It's dead easy. Just follow it, download the app
and you've got the app on your phone and you won't want to turn
the notifications off because it's been just dinging all day,
which is good because it means everyone's interacting with each
other. But it's just been really cool.
I thought it was really cool where we had like this, you
know, from the Christmas, you know, we met people at the
Christmas special thing and we got to talk about this is really
cool at another level now. There's so many people in there
and there's people that we haven't met or interacted with
maybe directly on Instagram. They've got so much value to
provide the to provide the people on the platform.
Well, this is. Fucking nuts.
People we've never spoke to have got so much information.
No, you the great. You know, we said this
Instagram, we put a reel up and it could be about a specific
tiny topic and then people kind of comment and everything else
like that. But if you ask a question, the
chances are most people are going to probably miss that
question and not you're not going to get a response.
So we had a bit of a think, how do we get round that?
And and this seemed the logical ways that oh, we'll create a
discord and then, you know, give subtitles or subsections into
it. And then you can go in there
say, look, guys, I'm struggling with this.
Yeah, great. Here.
Everyone is just piling in. If it's try this try.
That me, she was sleep. I'm going in the sleep room,
guys. The only answer you're going to
get in that room is about sleep, because what you don't do is get
drained out by all the other stuff, which kind of we found
yesterday people started talking in the general chat about
Motability. So we've made a Motability
section and you could drop links in there to products or cars or
seats. Same with the HCPS, you know,
everything else like that, You'll, you'll have people with
personal lived in experience going.
You know they say try this, but it didn't work.
Yeah, yeah, it didn't work for me.
But I tried this, which is completely random and it just
seemed to to crack it. So you go, right.
Yeah, I'll give that a shot. Yeah.
So again, that's a free service. Yeah, it's not a service, but
it's a free. Just a place in it.
Yeah, just. A place, just a.
Place to drop in just. Trying to keep building it.
Go in, introduce yourself if you can.
It's just not. I think the introduction channel
is just nice because people drop in, give themselves an intro and
see very quickly how much welcome.
Yeah, yeah, absolutely. Everyone else is really nice.
Absolutely. So yeah, that's been, that's
been since Saturday and it's just I can't keep off my phone
mate. No, it's constantly going.
It's just like just just nice going in there and just reading
all the messages and. I think this is the year we
really do build on the autism diecast, yeah.
And solidify this community and yeah, and just make it that
place where everybody that's going through what we're going
through goes, Right. I can go there.
And hopefully we come across as honest, decent human beings.
And we're obviously trying to do the right thing for for our
children as well as the community as well.
And I think we've said this year we're just going to keep
doubling down on that and making sure that is what we do.
And if we can be used as Jesus Christ sound crazier?
If we can be used as a conduit, A conduit, A conduit for for
good words I thought I'd never say, then, then so be it.
Yeah, we'll absolutely do it. And if we have to keep going
down to London or wherever it is to have these conversations and.
Well, that's kind of it. Why this paid bit is?
Oh yeah, you're taking the pressure off because yeah, the 4
LB. We're trying to make it as cheap
as possible to. Still cover £200 a day for.
A job, yeah, it's four. It's £4 to join the the stem and
whistle. This isn't us going to a Swiss
bank now and leaving the country or anything else like that.
You made a point kind of the editing software that we have to
use and everything else is the various subscriptions that we
have to do for. Even Linktree.
For you know. Linktree.
Just to put all your links in one place, you have to pay for
linktree. Oh.
My God. Yeah, but the the.
Train is what hit me the other day to London.
You know, we take a day off work to go to and this is, it's not
us just fucking moaning about it.
We're just trying to give a bit of perspective as to why it's £4
a month, yeah. That's actually why, because I
don't want to charge anybody. No, we'd rather everything was
free and that's why, you know, we, we haven't signed up to any
deals or anything else like that.
Yeah, but like taking a day of work, going down to do the
Hidden 20% podcast, going down to the Department for Education,
we lose a day of work and then it's £200 each.
Yeah. To out of our own pocket with no
reimbursement. No or anything else.
BBC The BBC Did the BBC. Two, I got ABA quick back for my
train. Yeah, yeah, they they did.
So fair play to the BBC. Obviously nothing from the
government, Yeah, but that's, that's it, isn't it?
But yeah. It's the government because
actually if they did pay us back, it'd be taxpayers money.
They'd be paying us back with no.
It's awkward, isn't it? There's no money in the coffers
anymore. So yeah, that's, that's all it
is. So we it's not even touching the
side of the barrels, but it would just make a bit of a date
and it might even pay for one of the subscriptions or something
that we pay on a monthly. Basis, Yeah, I think, I think
it, it will now so far, yeah, it'll pay, it'll pay for it.
So please. Please join SO and thank you.
Because it's helping us pay for the subscription so we can carry
on doing this, this podcast. Which we absolutely want to do.
Yeah, because I love it. It's great.
Has your has your week been with Lydia?
It's been good. Yeah.
It's it's actually been good. Yeah.
She's doing really well at school, no issues in going in,
no issues in coming home, Sleep sleep.
Monday to Friday we noticed this sleep was pretty much nailed on.
We're talking like half 7 till 59 till maybe 6.
Dare I say it, first day of the weekend, Saturday when she had
no school up at 1:00 in the morning.
OK. She knows she's counting the
days. She must know the only thing.
I can presume is either school is absolutely wiping her.
Out but you but you would expect on the Saturday because of the
Friday she would sleep the same. You would think it would be.
Though, so I think, I think she knows the days, yeah.
Even if it's subconscious, even if it's just my cage.
Yeah, it could be something, but then we were on Monday now, so
Sunday nights Selena told me that she slept pretty much 96
again. Yeah, so I'm just ready for
school, but it must be that kind of oh, there's no school today.
I'll stay, I'll stay up late. Yeah, yeah, yeah.
So that was it, I think. What else potentially happened?
Interesting e-mail from Steven, our Spellers expert who was at
the Christmas Christmas special. I don't know if you saw his
voice notes in the. I did, yes.
Yes, yes, same cheque out to see if Lydia.
Yeah. Gluten.
It's gluten intolerant. Yeah, because he heard about the
food. She was.
Eating he heard about the food he was she was eating that it's
it's kind of those berries, vegetables, whole, Whole Foods,
shall we say there's. People listening to this going
oh how terrible. Yes, your child eats fruit and
veg. Yeah, I know we're not moaning
about it. It's great.
But then he made a point going and I bet she eats kind of
anything with gluten if the flavours mask or it has
something with it. And it's like, yeah, well,
funnily enough, she's she's gone off eating any form of toast,
just likes the butter of it. As I said last time, you know,
fruit toast is completely gone. Hot cross buns used to be a
fave. They're they've completely
disappeared. She just picks out the raisins
now. There.
We managed to get her onto those little kind of small pizzas.
Was it the Chicago town ones? You know, a little mini ones, 4
cheeses. We cut them up into triangles
for her and it was a bit of a win when she started getting
interacting with it. But she takes the cheese and she
licks the sauce off and then discard to the base.
How does she know there's gluten in the thing she's avoided in
maybe? It's part of the Tilapoo Tapes.
Maybe. Maybe the other kids have just
said to her, don't eat it. Don't eat it, it's got gluten.
It's got gluten in it. Gluten's bad.
So yeah. So the thing now is I'm going,
oh, should we do a test? Should we just do a complete
test on, on allergies or allergens or whatever and see if
there's, you know, if it is gluten, if there's something in
dairy or if there's something that you know, does trigger her?
Because not to get too gross about it, the the stuff that
comes out the other end looks very interesting.
Really. So you kind of think, yeah,
could this be something? Could she have been upset
because she is bloated and unhappy in that sense and can't
communicate it? So there's lots of kind of
things going. You know what, let's get this
checked out. Yeah, there's, there's so many
things are going. Parasites are a thing as well.
Yeah, well, we got option from. Parasites and.
We get a wormed. Get a work.
Yeah, we've, we've had Thomas worm, but we did a, we did a
test, a tolerance test for Thomas.
Yeah. How did you hear about doing
that? I think it was a finger prick
test. Oh was it?
I think can't remember but the the list that came back was
pretty so it'll give you like a red, amber, green.
Oh, wow. OK, A.
Hell of a list. And his, his, his, his weight.
Wheat. Gluten, I think egg whites is on
his so it'll bring there's like for him.
He had like two or three that were like in the in the red and
red and amber. So but it's quite interesting.
I mean, onion is 1 like not for him, but it's they test a shit
load of that. Yeah, onion red wine, like
there's loads on this list. Geez, He's happy.
He's not allergic to red wine. So he's, he's quite.
Goodness. Yeah, it was a It was something.
That should be an autistic and not being able to have red wine.
And can't drink red wine. Oh, what a life.
So, so yeah, they're worth doing, worth doing even if it
kind of confirms, I mean, these food tolerance tests, they're
not like 100%, but even if it just kind of gets you
interesting, The thing I thought has been confirmed by this as
well. Yeah, you know.
And you'd think they'd be able to spot the most obvious, like
wheat gluten and. Yeah, yeah, it's the big stuff.
So yeah, yeah, definitely worth doing.
I think we'll do that. Yeah, it's yeah.
It's interesting and it comes back super quick.
Oh really? Yeah, it comes back really quick
and it does, it kind of guides your decisions then a little bit
on what to. OK, well, she doesn't want to
eat this. Well, I'll stop trying to give
it to her because that might be the reason she's whereas most of
us are trying to. It's funny, isn't it?
When you've got like when you've got a typical kid, you try to
get them to eat healthy food, right.
But when you've got a neurotypical kid, sorry, and
you're a divergent kid, you want them to explore all the foods
that you're trying to avoid typical kids having because
you're trying to broaden, broaden their kind.
Of yeah, yeah. Yeah, it's weird.
Like we do it like. Go to your kid.
Eat the fucking Nuggets. Yeah, eat the chicken Nuggets.
Yes, eat the chicken. Like Mish got excited, she sent
me a photo because he was eating McDonald's and I'm like yes why
the fuck are we excited about a kid eating McDonald's?
I know, but we all do because we're trying to just broaden
their interests. Yeah.
We're trying to get that base of core foods up from a couple to
exactly 6 or 7, Yeah. And then hopefully build upon
that. But yeah, absolutely.
Oh mate your your comment last week was funny.
Which one? There's so many about the.
Chicken Nuggets About the About the chicken Nuggets.
Fit for work? Oh yeah?
Well, it's true though, isn't it?
Had a few comments on. That yeah, yeah, you'd lose the
DLA, you'd lose. The DLA fit for work but mate
Thomas, we do this thing with the school where we try and show
them what the kids are doing when they're not at school and
we've not been doing it. So Mitch took him to Sainsbury's
yesterday. Oh, I saw.
This got loads of photos of him, Yeah, picking out his bacon and
then taking bits and pieces through the till and on the
self-service thing, like scanning, and he scanned his own
Jelly and you just kind of go. A few years ago we couldn't even
get you in Sainsbury's. Yeah, and now you're scanning
food and it I don't. Think it was in a few years ago
I think our first early podcasts.
No, you're right. Yeah, it's funny.
It's. Only May.
It was what we're talking about 8 months ago.
I've made it. Yeah, it seems that long ago.
I can't, you know, all the trips to Sainsbury's, what a nightmare
they were. Couldn't get him in or my.
God, yeah, it seems like it seems like 3 or 4 years ago it
wasn't. It was literally the development
he's had in in that kind of eight-month period is for not to
you. But then you wouldn't think, sat
there in May when we started this, that you'd just be saying
what you were saying, that Thomas walked around happily.
No, with Mish round the supermarket.
Or that you'd be getting the sleep.
Or that Lydia would be getting the sleep.
She's. Getting Yeah, yeah.
It's just you. You.
Things are so hard at the time, you can't help but think that's
your world forever. You can't see a way 8.
No and because like we say it many times and lots of parents
say you take every day as it comes day at a time and you
literally are day at a time, but that causes you just to get
through that day. But then you forget sometimes
that how far your child actually comes in that.
Because it's so incremental. The improvement is so
incremental, it's so you don't even notice it at the time.
OK, you might have these tiny little wins, but it's only when
you look back a year, you go fuck me.
Oh, my God. Yeah.
Like, it's been like 1% every day.
Yeah, 1% is not really noticeable.
And you just think, holy shit, balls, that's crazy.
And. A lot of people in the early
days who are just kind of going through the diagnosis period
will probably hear this and go. I don't think it'll ever be like
that. But yeah, we're exactly the
same. I get it, We're exactly the
same. I just sat there bawling me,
eyes out on the sofa. This.
Is my life forever? This is my life, this is my kid.
He's not going to do anything. He's just going to be sad all
the time. He's just going to be meltdown
after meltdown. Never going.
To understand what they need. We're never going to be able to
communicate that's. Fucking nuts.
But that kind of the reason Thomas is where he is is because
we just push him enough. We don't push him so far.
No that it causes meltdown. It's just little tiny
challenges. Work a little bit harder for
this, yeah. Just a little bit 1% just come
on, just exactly look a little bit harder for this he's.
Working a little bit harder. I'm.
Going to leave me by the hand, but you need to show me a bit
more. Exactly.
Don't just. Throw my hand.
Just don't just take me to the kitchen.
Yeah. And the next thing is like, OK,
you've LED my into the kitchen, now you're throwing my hand in
the direction. OK, Yeah.
Next time I want something else. Yeah, yeah.
And it's just very, very tiny. So they still carry on doing.
It, it is. And again, I, I think it, it
gives them confidence because I, I imagine again, so odd, you're
going to put yourself in their little, their little world.
I imagine it's so difficult when you can't communicate and you
just end that little world all on your own, that it be very
easy to have complete fuck all confidence in anything you do
because everything you try, no one understands what you're
saying. So when you do these, you push
them a little bit and they get it.
It builds the self-confidence up and before you know it, it's a
little bit like Thomas was spelling car.
When we spell car. He looked at it and we were
like, we've pushed him too far. Oh, he's confused.
He probably feels a bit shit. Next day.
He fucking spelt it because he felt confident when he was on
his own to try it on his own. Spelt it.
I think it is like that I mean. It's just confidence, I think.
What would it be like if you sort of dropped us into a remote
village in China and like, we couldn't communicate and
everyone's just staring at you? What do you want?
You're like, my God, this. Oh, you do get it.
OK, We'll start going here and start building it up.
And over a period of time, yeah, we then were able to
communicate. But jeez.
And that's us being neurotypical.
Exactly that that. Throw everything else into that.
Exactly, because that's the thing, it's not just the
language barrier, it's it's the autism as well.
It's like so, so yeah, it's just, it's just nuts.
It's it's crazy. And I think that's what kind of
what's been nice about the Discord is there's people asking
questions and there's people a few years ahead are going do
this, we'll try this. Somebody asked the question.
This is always a good thing, isn't it?
That kind of having somebody that's going through what you're
going through who's maybe 12 months, two years, three years
ahead of you. Yeah, it's so helpful.
Yeah, I've learnt from you with Thomas being a couple of years
older than Lydia going, oh, you've been going here, don't
worry about this, try this. That's normal.
You'll get this next. And he was like, OK, no problem
at all. So having that, those people
that you can just go, oh, you're a couple of years ahead of me on
this. What's what's going on?
What can I expect? He'd be like, don't you worry.
Someone dropped in in Discord and it was kind of a random
question because we didn't have a channel for it and this is
kind of what he's all about. Goggle Wayne.
He was asking for advice on private assessments.
He's got 1 coming up has no idea what to expect and he just does
anyone know? And I was like this is my first
time to test this so I just did at everyone.
Could someone help weigh in with this?
Everyone, everyone that's had experiences with private
assessments all came to the chat and started helping mate and I
was like. And that's free.
I was like, that exactly. That's free.
I was like, that's what this is about, That somebody comes
feeling a little bit like, fucking hell, what do I expect?
I don't know the answer because I've only got Thomas and
Thomas's autism is my experience and he's got a diagnosis at
everyone. Can you help Wayne?
Fucking absolute God send. There you go.
And the ability to be able to do that and everyone else can do
it. Everyone else can just at
whoever they like in that community and help each other
out and it's fucking men. I was thinking as well in that,
and this is, this is just the stim and whistle bit.
In the stim and whistle you can play YouTube videos for everyone
in the pub. Yeah, we can do a private
screening think. It's like a private screening,
so I thought it'd be really good to get Spellers on because the
Spellers documentary's on there. Could you imagine all the
parents just watching spellers together?
Yeah, Oh my God. So I just thought things like
that. I thought, that's a fucking
brilliant. Idea literally this we've only
it's only been up. What is it now?
Two days, 2 days. We still don't know what we can
do with this. There's probably 101 different
things that we can do with. This I know at some point we can
there's like a there's a games room I've made.
We can get like a game of poker going in there.
Oh. Poker tournament autism.
Poker tournament well. Sponsored by.
We won't be paying with money because we haven't got any.
Yeah, none of us. None of us.
Well, someone have a bit of spare DLA money because, you
know, that's what. It's oh, there's always a bit of
spare DLA money, always spare DLA money, you know, at the end
of the month. Exactly.
Oh cool, through you. Don't put it in the S&P 500.
Just keep a little bit back and play poker with it.
I just throw mine out the window because I know the following
month I'll get more more, more DLA, more DLA money.
So, so yeah, I just, I mean, I'm so excited about it because
there's just so many things that we can do with it and other
people can do with it and they can just make suggestions like
they have been guys, can we have some more rooms for this?
Yeah, sure you can. Yeah.
We'll keep building it. You just tell us what you want
and we'll do our best to facilitate.
That's it, That's it. I I kept it very constrained to
start with. I didn't want to go over the top
making rooms. But then very quickly there were
so many different conversations coming up.
It was like, Oh yeah, we need, we do need a room for
everything. Yeah, we need someone arriving
to go. This is why I'm here.
PDA, cool PDA room. And I won't be in the PDA room
because I know fuck all about dealing with.
But we know a lot of people that will be in there.
Exactly. The other thing I was thinking,
obviously we've made this about parents and carers.
I think it'd be really valuable to get experts in to these
rooms. Well, they can just have the
whole, they can go on the whole thing.
Obviously, of course they can, but they might get a lot of
benefit having these experts in particular rooms.
Jessie would be fantastic in there, you know, PDA, autism,
ADHD. Yeah.
She's written books on autism and ADHD.
She's writing on APDA. Believe.
I believe so. The continents?
What was it? Consultant.
Continents Consultant. That's it.
She'd be great to have in there. Yeah, we need to get back to
her. Need to make a room for toilet
training, actually. Yeah, I will be in there quite a
lot. Not for me, for my son.
I can go to the toilet fine. But yeah, it's going to be
amazing, man. It's actually really good.
And it. Well, it's been up 48 hours.
Yeah. And everyone, could you thank
everyone that's in the by the way, thank you for contributing
like you are, because it's just been phenomenal.
At first I was very much like, get in, welcome everybody.
And then it was like, more people are coming in.
I was like, shit. But then everyone else was
welcoming everybody. I was like, yeah, there we go.
This. Is the thing, isn't it, You
know, I suppose one of the if you can take a positive out of
the situation that we're in and that sometimes could be quite
difficult to do. Yeah.
Is that because everybody has a shared experience of what life
is like now? We are very, very empathetic to
other parents going through the same thing because we know what
it's been like feeling isolated, an outsider that people around
you that just don't get it. So to to have this community of
people and just see everybody just go right.
I've got your back. Let me help you out here.
You're struggling. I totally get it Do.
You know what's really interesting about this community
as well is even I'll use PDA as an example.
I don't understand what it's like to live with a child who's
got PDA. No.
But I could be very empathetic to something I know nothing
about. And that I think is where, if I
can do that because of my experience with Thomas, I can be
empathetic about something I'm not experiencing.
But that's where like everybody else from outside the community
needs to do. They need to be able to go
looking in. I have no idea what it's like to
experience what you're experiencing, but I can
empathise with it. And that's the bit we need to
get right now. And I, like I've said many times
before, I didn't empathise because I was looking at these
children, especially autistic, because they look typical and
I'd be like get a grip of your kid.
That's that bit we've got to build and is unless you're going
through something similar, it's bloody hard to empathise.
Yeah. It's hard.
It's hard to put yourself in a position where, I mean, even
with PDA, for example, PDA is probably for me the most
difficult to get to grips with because I, I think I, I struggle
with PDA because I and I asked parents, I asked Charlie about
it the other day. How do you know the difference
between PDA and just being a little shit?
Yeah. And she's like, you don't.
And that's why it's so hard. And I see you have to treat all
of it as PDA. She's like, yeah.
It's like, right. OK.
Fuck, that must be so hard. Must be so hard.
Imagine you get it wrong. You get it wrong that one time
exactly. Oh my Lord, you've got to treat
it all as PDA, haven't you? You've got it.
Yeah, yeah. Well, hopefully we'll get Ben
one of the dads on. Yeah, he and.
He's coming off his. Wife, yeah, yeah, yeah.
I think he was just building up his confidence and everything
else, but I get it. Yeah.
He goes through PDA on a day-to-day basis and he often
tells us I've taken my child to school, but I've had to use the
Australian voice and the I think just to get a point across.
Sometimes he she accepted more if it's an Australian voice
really or accent. Sorry, sorry.
So yeah. Which again, it's just like,
wow. What?
Yeah. Oh.
My God. So hopefully we'll get harmonic,
explain it in a much better way than I did there.
But yeah, again, just one of those nuances of yeah, of of
this life. Yeah, that's.
Kind of everything that's not, I'm trying to think like, did we
talk about Barbie on the last one?
No, we talked about it. No, we talked about it on the
live and we talked on the hidden 20% a little bit.
Yeah, we didn't. We Yeah, yeah.
It was quite good. The live is where the penny
dropped for me and you wasn't. It.
Yeah. Yeah, it was.
Yeah, it's funny, isn't it, how it just happened on that live.
Yeah. So my initial reaction was
cynical. Yeah, my initial reaction.
Do you know what it wasn't? It was if.
Anybody doesn't know? Oh yeah, Barbie, Yeah, you
don't. We're.
Not just talking about your Barbie.
Don't. Know you're living under a rock.
Yeah, but yeah, Barbie manufacturers have come out and
they've released the Autism Barbie, Yeah, which comes with
Ear Defenders, fidget Spinner, AAC.
Yeah, I think the biggest problem I had was with like the
arms. Extra extra stretchy.
Arms, they're like a little bit more flexible, flexible or
something. I don't know.
I was just like, OK, but initially I wasn't, I wasn't
cynical because my viewpoint is still the same.
Is that Mattel? Any business doing something
like this, it's for commercial gain.
It's not for anything else. Yeah, I mean, and I get it,
you're a business. It's fine, capitalism, you go.
But I still had a bit of a oh, great look.
You're sticking all the all the stereotypes on a doll.
Not all autistic money out of autism.
Not all, not all autistic people wear ear defenders or carry AAC
devices or have intent. Apparently she's got like
intense eyes. I don't fucking know.
So that was my that was my opinion.
But then someone on the live said.
Yep, they said. My daughter saw the doll and
came up and said Oh my God, Mummy, she's just like me.
Yeah, she's got she's. Got air defenders like me.
Also, and that was the end of the conversation.
That was it. We both went OK, that's what
it's for. It makes complete sense.
No one is selling these dolls to me.
They're selling to children. If a child goes, do you know
what? I resonate with that?
Yeah. That's my God.
Finally, I don't feel different. Yeah, there's something out
there. And obviously we're not talking
about profoundly autistic kids. These are the kids that probably
are the same between us, as we say.
Yeah. But in fact, they've come out
and gone. My God, it's representation.
Yeah, I can see it and the excitement that kid must have
had. Yeah, she's got headphones like
mate, yeah. We.
Were like, we were like, not really sure about this.
Seems a bit, seems a bit seems like that.
And then we saw that message and we were like, okay, Yep.
Cool, the fact that one kid goes.
If only one doll was sold and it was to that little girl.
Yeah, exactly. Absolutely worth it.
And then we and I said to you, we'd be so cynical of companies
like that if they didn't have any representation.
You can't win can. You.
Yeah, we'd be slagging them off. Where are the, where is the
representation of autistic kids and everything else?
Like, why aren't you doing it? You're just trying to hide them
away. Yeah.
And as soon as they do it, we're like, oh, I can't believe you're
there to make money out of all. So it's one of those.
And you know what I've thought about it.
Fair play to them. Yeah.
We need more companies going out there, more programmes, more,
you know, exposure going these kids shouldn't be hidden away
like they were 40 years ago in, in, you know, asylums or just
our parents must be ashamed or embarrassed to bring them out.
No, let's change, let's change society.
Let's get the neurodiversity kids out there and and just have
some representation. So fair play.
And I look forward to the autistic action man.
Yeah, very much so. Who goes around just spitting at
people? Yeah.
Have you seen what's been really nice to come out of it, as well
as everyone doing their own individualised their children?
That's some good marketing, yeah, isn't it?
So good, very good. Use AI, make your own.
Oh yeah. But people have taken their own
kids quirks like and they've made their own dolls with AI and
I'm like. I've seen the parent one as
well. It's just sort of like
paperwork, EHCP paperwork in the background, DLA coffee cups
underneath it, says autistic mum, age 20 years plus in 24
hours. Yeah, so.
Yeah. So, yeah, exactly.
And that I kind of like that, that even if it was a negative,
but I don't think it was, I think it was a net positive.
Even if it was a negative, the community still find a way to.
Who's the manufacturer? Mattel.
Mattel, if you want to come and sponsor our podcast, then let us
know. Yeah, I mean, that's that's the
other thing. You'll notice that we are, we
have no sponsorship. We don't do any ads, we do
nothing. Yeah, if you if you want to be a
sugar daddy, you can reach us at www.autismdiecast.com and we'll
happily have a discussion with you.
Fantastic. Or a sugar mum.
Or a sugar? Exactly.
Are you willing to be a sugar mum?
The price is right. It's so yeah, it's been a good
week. It's been a bit of a mental
week. It's it's, yeah.
It was kind of ups and downs. Like Wednesday I kind of came
away going OK, positive. Then I kind of went.
I think 24 hours later you kind of reflect on it a little bit.
You go like, could I have done more?
Could I have said more than you very quickly go.
If I'd have gone any other, we wouldn't be going back.
The door would have shut. It's and it's getting the
balance right. Yeah, it's getting the balance
right because it's also we all got recommended to go on there
and they were told that you need to listen to that podcast first
because they can just be a little bit direct.
Direct was what it said in the e-mail.
Yeah. Sorry, we don't want to go in
there and just be complete assholes about it.
Yeah. And then go, what's going on
here? We can never bring these guys
back and have a meaningful conversation.
So it's also their first time interacting with us as well as
us interacting with them. So.
Yeah. Yeah, I think it went well.
Yeah, me too. And hopefully leads to other
conversations that we can. And that's the that's the
important thing. Is that it?
Yeah, it kind of keeps the door out for more.
Conversations, if we are fortunate enough to have a long
form conversation with the minister, we're going to let you
guys know first. And we're going to say again,
what are the key burning topics that you want us to ask?
Yeah. And we'll, we'll take the most
popular or some of the most like obscure if that's the case, and
we'll formulate them and we'll have a discussion with her.
And again, it won't be, as I kind of said to their media
manager, it's not going to be Jeremy Paxman style.
Answer the bloody question. No answer one question.
There's no point. We get nothing out of it.
No. What?
We get a little sound bite of us looking like absolute wow.
You've given her a hard time. She deserved it.
Yeah, but what's the answer with that?
No. Exactly 10 minutes.
Everyone's forgotten about it and we don't have any answers.
So yeah, so hopefully it happens.
There's no reason it shouldn't because, you know, we'll we'll
be fair. It'll be a conversation.
It's not being interviewed. So it can be a conversation.
OK, mate. Perfect.
I think that's it. Is there anything else?
There's probably 101 things that we'll remember once we stop
recording. We'll turn all the cameras off
and then we'll go fuck, we should have said this, but look
and. You know, we, there's probably
going to be quite a few new people listening to this because
we are, we have realised we've missed out on going on Facebook
and we just started hammering that a little bit, shall we say
over the weekend and it's, it has taken off.
So if you are new and you do see this again, we're on Spotify,
we're on YouTube, Apple Podcasts and all those various other ones
that I didn't know existed until, until I Googled us.
I was like I thought that format as well.
I thought that. I was.
Like what's this? Yeah, yeah.
Absolutely. So apparently we're on quite a
few, but you know, do have a listen, do subscribe, do follow
us on all the various usual social media platforms.
All you've got to do is put autism dad cast in and we do pop
up. But yeah, I think that's it for.
This week go to the link tree. The discord's in there.
Stem and whistle's in there. The page to obviously donate for
our London Marathon. That's in there.
Everything's in there. Yeah.
If you just want to find everything, just go in there.
That's where it all is. All right, mate.
Thank you very much. Absolute pleasure.
And I'll see you in this dimmer whistle, See.
You in this dimmer whistle for a pint.
See you mate. Take care, bye bye.