Difficulty with transitions - Part 1 | Pete Wharmby

EPISODE TRANSCRIPT

Mark

Hello, and welcome to episode 45 of Neuroshambles. As always, it's a joy to have you back again, Neuroshamblers. So, thanks for joining me. Now, I've got a confession straight off the bat here. This episode was supposed to be a standalone episode. But it soon became clear as I was chatting to my guests that this conversation was so rich and so nuanced that we really didn't want to truncate it or cut it short or essentially shortchange you guys, so we just let it run and explored all the various nooks and crannies of this topic of the week. And I'm really glad we did. But what it did mean is that we had to split it into two parts. What you have coming up is the first part of this topic, which I'm pretty sure is going to be pertinent to all Neuroshamblers to one degree or another. We've also got some neurodiversity champions, some tiny epic wins, and some what the flip moments, so I'm going to stop delaying and we can get cracking

SECTION INTRO

Meet the guest.

Mark

So this week's guest is probably no stranger to Neuroshambles listeners, as he is one of the most prolific and thought-provoking advocates in the world of neurodiversity. Not only is he a parent to an autistic child, but he's also written several books about his lived experience as a neurodivergent, as well as being a tutor, a conference speaker, and as anyone who might have listened to him on episode 32 of Neurodo Shambles will attest. A superlative podcast guest. I am delighted to be able to welcome him back to the show. It's Pete Wharmby. How are you doing, Pete?

Pete

Hello. I'm fine. I'm fine, as always. Chugging away.

Mark

Chugging along. So obviously, not all of my Neuroshambles listeners will have heard the previous episode that we recorded.

Pete

Indeed.

Mark

So if you'd just like to give us a quick recap of your neurodivergent setup over there?

Pete

Yeah, yeah, sure. So yeah, I am primarily a writer and a speaker. I do training, courses, speeches, all that kind of Stuff that you do when you're in the world of writing books. All about being autistic, what it is to be autistic in the world, how the world isn't set up for autistic people. And these days, increasingly, how schools in particular are kind of really failing Neurodivergent children in really quite significant ways. That's my new, well, not really new.

Mark

I mean, I was a teacher for 50 years. Yeah, you see different both sides, don't you?

Pete

Yeah, yeah. But but certainly in terms of advocacy, it it's the thing that I've swung towards. The the book that I'm writing is focused entirely on education I was just yesterday at the rally in London outside Parliament.

Mark

To be honest, though, that is where it feels like people's powers are most needed right now, I think certainly, you know, from where I'm looking.

Pete

Yeah, yeah. The um the the disempowerment of of parents of disabled children, children with special educational needs. um the kind of victimization, the blame game that goes on over and over again. Just parents not getting the the support that their children deserve was the kind of Cause of that rally, and I g I gave a quick I gave a quick talk at it, you know, a quick speech at it. Never done anything like that before.

Mark

How was it? You rabbled out to me, Pete.

Pete

Yeah, well, I was a bit to be honest. You know, you you you you find your voice going up, yeah, you know, you find your the the anger rising a bit, you know, with Big Ben there and just the atmosphere and the feeling that, you know, for hundreds of years people have stood on that spot. and shouted at the government. You know, it kind of it it takes over a little bit. So it was it was a fascinating experience. Lots of really good speakers from across the community, and also Ed Davy was there from the Lid Dems. getting a little bit of media attention for once because, you know, if you're not reformed, then you don't get much airtight. But but yeah, it was it was it was really nice. It was really nice. We shall see if anything comes of it, of course, but we are trying.

Mark

Yeah, absolutely. Absolutely. And in terms of the neurodivergent setup in your home, you've got a sorry.

Pete

No, no, it's fine.

Mark

It's all part of the rich tapestry of neurodivergency going on over there.

Pete

Oh, yeah. Well, I mean, I'm ADHD as well, so I'm going to forget what I'm talking about halfway through a sentence, you know. But yeah, so my daughter's a My daughter's almost certainly autistic, almost certainly ADHD, very, very similarly presenting to me. She's she's at primary school at the moment, but obviously secondary school. rears its head eventually. That's she's ten, so it'll be next year.

Mark

And that's undiagnosed, but almost certainly neurodivergent.

Pete

Yeah, certainly from my point of view. You know, I mean, I don't think there's very much question as far as I can tell.

Mark

It's a decent position to be able to judge as well.

Pete

Well, that's the thing, though. You know, you'd hope so, but ultimately. Somebody could just bit up, well, they haven't got a proper diagnosis, therefore.

Mark

Maybe one day she'll sit you down and come out as neurotypical.

Pete

I can't see it. I really can't see it. It's um That would be that would be a shock just based on how she is, you know. But well, I mean, you know, you are who you are, aren't you? But ultimately, no, I mean, goodness me, she reminds me so much of me. She's better than I am though, in many, many different ways, like far more outgoing and more confident. You know, d doing better generally than I was at that age, which I think is really nice.

Mark

Do you think part of that is that you are aware of her neurotype and have been from an early age and have been accommodating that and not Squashing it.

Pete

I mean, it who knows? You know, I can't take a an external position, you know, and sit above it all and look at it. But I mean, I would assume that has to have some kind of impact. You know, because yeah, I mean, that that's what we preach, you know, when when I go into schools and when I talk to parents, I talk about, you know, being informed, knowing what you're dealing with, you know, and knowing how autism works. I mean, all the stuff I talk about tonight, for example, will will be along those lines. And yes, you you hope that if you do do that stuff right and if you are very mindful of neurodivergence in the in the home and in interactions with school, that yes, presumably the end result of that would be a relatively happy child is doing pretty well as as opposed to what I was like at ten years old, which is No idea about my neurotype. My parents had no idea either, of course, you know, because it was the early 90s and no one knew, really.

Mark

He wasn't around then, Pete.

Pete

No, indeed. Yes, indeed, indeed. And you know, I was struggling back then. You know, I found school tricky. I was off school an awful lot. you know, I always had tummy aches and things like that, so that I didn't have to go in and I could spend a day recuperating a little bit. As I look back now, you know, I can see that's what I was doing. And, you know, I was I was shy, I was withdrawn, I was often quite self-isolating. Um, whereas Whereas my daughter is in many ways the opposite of that. You know, I think she's got that tendency, just like I have. You know, we're both naturally quite happy on our own and that kind of thing. But she's very outgoing and very, very capable. And it does very well. So yeah, yeah.

Mark

All right. Well, thanks for introducing me to your setup, Pete. We will get on with the topic of the week because it's a big one.

Pete

Yes.

SECTION INTRO

What's the topic of the week?

Mark

I seem to bring the big ones to you, Pete, for some reason.

Pete

That's fine.

Mark

But let's get through it. I think I'm really interested in unpicking it. Meet the guest. So, this week's topic is one that is going to resonate with, I think, all Neuroshambles listeners to some degree, and that is difficulty with transitions. Now, obviously, all parents have to facilitate transitions for their children. That is a key part of the job description. From the seemingly simple day-to-day ones like getting up, having breakfast, brushing teeth, leaving the house can be a big one, but also some of the major transitions such as changing schools. moving house or navigating puberty, which I'm dreading. Um, not for myself, obviously. I graduated a long time ago. But I think it's fair to say that not all parents experience the significant backlash of overwhelm experienced by our neurodivergent kids whenever a transition is introduced. So, I wanted to have a closer look at why changing from one state to another can be so dysregulating for them. Now, In the last episode I recorded with you, Pete, we looked at masking. And what I found super helpful about that was hearing you describe how it feels from a neurodivergent perspective. Because obviously, my kids aren't yet fully able to articulate very clearly to me at the moment. what they're going through. So talking to you is like being given a bit of a backstage tour of what they might be experiencing. So I'm hoping to learn a little bit more about how this Applies to transitions, yeah.

Pete

I mean, you know, ultimately, I struggle with transitions at the age of 42. You know, I had to do one just, you know, 10-15 minutes ago when I had to stop playing my video game.

Mark

Oh, I'm so sorry.

Pete

As you should be. And had to go through the rigamarole of getting ready for this. Yes. Just getting into the right headspace, just coming upstairs, plugging everything in. It's never really got any easier, if I'm honest. It still comes with its challenges, which I'm sure we will unpick in great detail.

Mark

Yeah, yeah, yeah, yeah. Because I think, you know, the thing is. that transitions in life are unavoidable. Oh yeah. Like you can't get around them. That every everything is a transition to a a degree. And I think that they cause dysregulation for all neuro exceptional people. To a greater or lesser extent, but I think it's even more keenly felt by children. I know that you're still having, you know, difficulty with transitions now, but. It's a fundamental part of growing up. Like childhood, that's all childhood is, right? It's a series of transitions. Growing up is an accelerator pad of transitions, mentally, physically, emotionally. you know, they're very rarely in control of what they do. So much of their life is, you know, by necessity dictated by adults, which has got to have a huge impact on kids. Kids in terms of certainly if they crave predictability and certainty and routine, they don't know whether they're coming or going most of the time, I think.

Pete

No, no, and it's something that I think we're going to continue to come back to. And I think people often tend to overlook the sheer lack of autonomy that an autistic child has. over the world. It's in wh when I was up in Liverpool recently, I was doing a talk for a uh for the uh performing arts college up there, you know, the um Paul McCartney one. Towards the end somebody asked the classic question of Well, you know, we've got to get them ready for the real world, haven't we? We've got to get them ready for adults. And well, you get it all the time from Teachers, you know, it's water off a duck's back. You know, that's that's how they view things. They view themselves as like the gatekeepers of the adult world. And I said to them, well, look at it this way. When they've graduated from here, and when they're adults, when they're like 18, 19, 20, 21 years old, if they want to, they can change their socks during the middle of the day. If they want to, they can decide, you know what, actually, I'm going to go home now. Because they're adults. Adults have enormous amounts of Vauton. I mean, we don't have as much as we'd like, don't get me wrong. you know, if you work a nine till five job, but even even as an employee at a job, you've got way more independence and autonomy than a schoolchild has. You know, by orders of magnitude. And this is so often forgotten. And this is why children, I think, have autistic children in particular have a particularly bad time because. They just do not have any of that freedom or independence to be able to do what they need to do at any given time. To regulate.

Mark

And if the adult doesn't really understand how to best accommodate neurodivergence. And then the neurodivergent child is not in a an environment where they feel they can raise that, then they're having to swallow it all the time. They have to just deal with it, which is a horrible state to be living in. Yes. And so much of this is sort of centered around transitions. And I guess one of the main issues with transitions Is not knowing what's next, I think, because it's planned by someone else.

Pete

Right, yeah, absolutely, yes, yes.

Mark

It's like, what have you got in mind? Yeah, I don't know. So I thought I'd look at some of the different reasons why neurodivergent kids might be dysregulated by transitions.

Pete

Yeah, absolutely.

Mark

And maybe look at some of the strategies that can help to make transitions easier. It's never going to make it easy, but it might sort of just take the edge off it a little bit, might smooth the transition a little bit

Pete

That's the aim. That's certainly the aim. Yeah, exactly.

Mark

And you know, I'm sure that everyone at home has got their own sort of methods of doing this. I'm only going to be able to suggest things that work for my lot. But I've got quite a broad range of of different presentations. So there might be something useful.

Pete

Absolutely.

Mark

One of the reasons I think for Kind of a difficulty with transitions is a fear of the unknown, as I've just alluded to, right? Is that when you're trying to get your child to do something else They don't necessarily know how that looks. And that can cause anxiety and dysregulation. Specifically, you know, it the autistic brain, I think, craves that a little more.

Pete

It does, it does, yes, yeah. I think very often people tend to believe that Autistic people simply like routine and like predictability because that's just autism, you know? Like, hey, autism Where you love routine, you know? And I'm not entirely convinced by that. Number one, because of the co-occurrence of ADHD. You know, how does that work?

Mark

Yeah, absolutely. I was going to mention, yeah. Yeah, because if you're ADHD, everything flies up in the air.

Pete

But even with ADHD autistic people like myself, there is still a craving for routine. And I don't think it's because my brain naturally just is comfortable with routine. Because in many ways it's not. There's something else going on. There's a reason why autistic people like routine. And it's a very straightforward one, and it's entirely relatable. It's simply because of stress. We like routine because we we are so stressed out all the time. We like familiar stuff because we know how to deal with it.

Mark

Familiarity, I guess, and consistency and basically, you know, knowing what what's coming so that you I guess, you know, all of our kids are on this high state of alert at all times, probably to a degree that I will never understand.

Pete

Oh, yeah.

Mark

And so if you are constantly looking round the corner for whether there's a bear. Which can be how it feels, I'm sure. Then any new activity, you don't know if there's a a Bear around the corner.

Pete

Absolutely.

Mark

So, yeah, that's that's naturally this fear of the unknown is part of that. I had a a good example of this, which I mentioned briefly in one of the other episodes of Neuroshambles, but I think it it really nicely illustrates it, is that even if it's something nice, it can cause dysregulation. And this happened with India. India had an invite to a birthday party, and the invite was written by a classmate, and it simply was a picture of a cat with a star on it. And it just had an address and a date and a time, which I thought was wonderful.

Pete

Yeah, exactly. Whereas Indy was just like

Mark

Fuck no.

Pete

That doesn't fill me with happiness. You know, it's like, what's gonna what's gonna happen? You know?

Mark

It's the mystery cat. So so India was obviously like not really on board with it. And I said, like, Do you want to go to the party? And she started shaking her head and going, No. And then and then I sort of pieced it together and said, Is it because you don't know what what's going to happen? And she said yes. So I wrote a response to the mum and just explained it very clearly. I was like, look, India needs to know. what's what it looks like so that she can kind of understand because she's feeling a bit anxious about it. And the mum wrote a a phenomenal response. It was it was wonderful. Like the it was I did it as one of the Neurodiversity Champions 'cause it was just like an unbelievably beautifully worded response about like India can come over and see our house before the party if you want on a different day. Here's what we're having for Food, these are the games that my daughter's got planned. Uh, and if she doesn't like the food, then we can find something different. And it was just like So wonderfully worded and so inclusive. Yeah. And I sort of read it out to India, and she was like, Oh, yeah, fine, I'm totally going.

Pete

Well, there you go. Yeah, absolutely. But I honestly thought that was going to go in a different direction. I thought you were going to say that the mum was going to say, oh no, it's all a surprise. You know, because that is when things really go wrong. But I mean, we've got to bear, you know, like, because you know, so many autistic people don't like surprises for exactly this reason. Because, yes, you know, let's unpick this a little bit then. You know, why why would India be so afraid? You know, because car you know, some people out there will be listening and thinking, well, you know, parties, a party is great, a party's a good thing. You know, how different can they be? And all this kind of thing. But, but, you know, when it comes down to being autistic, a person's, Often like regular everyday experience of being autistic is going to boil down very often to um your sensory experience. And your communicative social experience. Okay. I mean, there's other things too, but they're two of the really big two of the big guys. Yeah, the big pillars of autism, you know? And the party represents enormous challenges in both directions. You've got. You know, what's how noisy is it going to be? How many people are going? What kind of place are we going to be in? Is it going to be echoey? Is it going to be dark? Is it going to be light? Is there going to be likelih the likelihood of like a quiet place I can go and hide in it, like a public toilet? You know, like if you know that you're going, for example, to a restaurant. You know, you even as a kid, your brain is kind of already starting to go through the motions of, okay, I've been to a restaurant before. They usually have a toilet, so I could maybe go and hide in there. Usually, we're only there for about an hour or so, so I'm not going to be there for too long. The lighting's probably going to be okay, so that's not too bad. Do you know what I mean? You know

Mark

Yeah, that all of that stuff is whirring away, but it's so interesting to hear this articulated, though. Yeah, I'm just like, yeah, let's go to a restaurant. Oh, God, yeah, I don't even know what that would feel like.

Pete

I don't know how it could feel to be so blase. About something like that. Yeah. You know, I if it when I whenever I I mean, I do do quite a lot of new things and I go to lots of new places and, you know, experience new areas and stuff. So I don't have to kind of, you know, go into bars and restaurants and things that I've never been in before, but it's a it's a process, you know, that I have to go through to figure it out and work up to it, yeah. So so India was probably having all of that going on in her head when she saw the kind of vague ambiguity. And that's the thing, it's ambiguity, vagueness that is one of our greatest enemies. We like to know what we're dealing with. So that initial invitation is going to be sparking off all these fears So you've got this sensory fear. You know, is it going to be uncomfortable for me? If I go to this place, is it going to make me really, really uncomfortable and really unhappy? And is there a likelihood that I'm going to be pushed into meltdown? Now a child is unlikely to be able to put that into words. Maybe a teenager would, probably quite easily. But somebody who's like eight, nine, ten probably won't be able to. But they'll certainly remember what meltdown feels like. And they won't.

Mark

And so it's an instinct. Yeah, yeah, it becomes kind of clam up immediately because of you don't want that again.

Pete

You do not want to do that again. Because when that happens, it's horrible. Mummy and daddy are angry with you. I mean, not saying that you would be, but often that is the reality.

SECTION INTRO

Yeah, yeah.

Pete

You know, other peop other kids look at you like you're weird. You're embarrassed, you're shamed, you know, all of that. You don't want to go through that again. So you start to think, I am not going to put myself in a situation where I could find myself having meltdown.

Mark

Yeah. And when given the option, you'll say no.

Pete

Of course. If you want to go on no, I know what no looks like.

Mark

So, therefore, it's a hard no.

Pete

I can stay at home and I can do what I always do. And I know that if I do that, I probably won't have a meltdown. And I'll probably be relatively comfortable in my own environment that I'm used to. You know, it's actually an enormous ask to ask an autistic person to enter any setting. that they haven't got some kind of pre warning about. Now that wouldn't be the case. If the world was established and set up with autistic people in mind from the very beginning, that probably wouldn't be an issue. Not that often.

Mark

But how would that look, though?

Pete

It'd be darker. It'd be darker. It would be. No, no, I mean, honestly, it it it it would it would be dimmer, but it wouldn't be dark. It wouldn't be like Yo Utter blackness everywhere.

Mark

End of days kind of don't know. What I'm saying is, how would you ease transitions then? If things were to be set up.

Pete

Oh, it wouldn't be such a problem. It wouldn't be such a problem. all of our stress levels as autistic people would commensurately be lower. You know, m me, my daughter, your daughter, all the autistic people everywhere, if the world was more set up for us. Our stress levels would just be at a far lower level all of the time.

Mark

So there'd be more capacity. Yeah, this is the thing I'm noticing lately, actually, is that none of these things that I talk about are really hard and. Fast, they're very situational sometimes.

Pete

Oh, yes, absolutely.

Mark

Depending on how regulated my kids are.

Pete

Oh, yeah.

Mark

So, if my kids are generally well regulated, so like summer holidays that have just gone is a good example. I was stealing myself for like a bit of a We're just going to camp in the house. We're not going to do a great deal. That was what I was kind of gearing up for. And it was fine because I'm being led by them. But over the holidays, they were just in a really kind of they were just regulated and they were able to do what they needed to do, that they were much more up for doing stuff outside the house than I imagined that they would be. Well, I mean, who who wouldn't be?

Pete

Imagine if you were living in your house and all of the lights were 50% brighter and all of the sounds were 50% louder. And you kept getting told off for getting things wrong. You know, you would be like, I don't want to go camping now. I'm too. And then if somebody came and turned all that down. And all of a sudden, people are being kinder to you and more patient and just slowing down a bit.

Mark

It just takes it off the boil a little bit, right? You don't bubble over.

Pete

Anyone would feel the same. You know, you just feel like. Oh, I can take on the world now. You know, I've got some space. I've got some capacity. You know, things have been made slightly easier for. And this is the thing. You know, this is what I go around telling everybody. Like. The ramifications for getting this right are absolutely game cha they're enormous. You know, if every school and every doctor and every hospital and every God, everything Just had as its focus, let's reduce the stress for autistic people as much as we can, realistically. You know, not reduce it completely, that'll never happen. But if we could just all just do our little job to reduce it a little bit. What you'd see is a cumulative reduction in stress for every autistic person everywhere. And all of a sudden, we'd have more ability to do all the stuff we actually want to do. And ironically, we'd get into less trouble because we would be able to Do what other people wanted us to do too.

Mark

And also, crucially, it's not going to disadvantage the neurotypical. So they wouldn't even notice.

Pete

They never notice. Yeah, like, you know, how many neurotypical people notice when they go into a supermarket during autism hour? You know when some supermarkets dim the lights slightly and turn the music off, it's usually like ten AM because the assumption is autistic people don't work

Mark

I genuinely didn't know there was an autism out. Is that a thing?

Pete

In some supermarkets, do it. Yeah, not all, but some do. And museums, yeah, museums do it too. In the museum in town.

Mark

Yes.

Pete

has a has a a thing kind of set out. But the point is that, you know, when that's happening, I I genuinely don't think the neurodiver the neurotypical people notice.

Mark

They're going to come in and go, Can we turn the music up and these lights on? This is boring.

Pete

Yeah, I mean, maybe a couple might, but I very much doubt it. You know, the majority will just go Boot, loot, loo, you know, do their shopping without even noticing anything.

Mark

And those ones, those ones that are objecting, everyone else will look at them going, they're just having a meltdown.

Pete

Yeah, you know, the only thing they'll wonder is they'll wonder why there are so many people. In the supermarket, all wearing jumpers with steam trains on. You know, that's the one thing that they're going to be thinking: like, this is a bit weird. That was a totally unreasonable overgeneralization.

Mark

about autistic I just wanted to pick up on one of the other things You mentioned in terms of the fear of the unknown because we look at the sensory side of that, but also the social side.

Pete

Oh, yeah, I forgot about that. Yes, yes, yes.

Mark

No, no, no, I'm here to bring you back to the point in hand. Because again, that's another thing for birthday parties. But any transition, I guess, there are gonna be people.

Pete

It's gonna control people. It's probably the bigger of the two. To be honest with you, it probably is the one that's more impactful. I mean, many people talk a lot about environment and sensory, and that is key and it's really important. And it's also relatively easy to figure out. You know, you just offer accommodations, you just make things more comfortable. The social side is far more difficult. Because the kind of thing that a typical autistic child, for example, is going to be worried about When it comes to the social communicative side of things at a party, for example, is going to be the usual stuff of being misunderstood Of being shamed, being embarrassed for getting the wrong end of the stick, or for telling a joke that doesn't land, or for asking questions that are de that are deemed silly, you know, or for just staying quiet and not talking, or the opposite. going on too long about your favorite thing. All of these things that we autistic people tend to do in our communication, you know, so for example, oversharing or talking too much about Pokemon, you know? Can lead to people, even at young age, even other children, being frustrated with us, being fed up with us, being pissed off with us. Like, oh, George, you're going on about Pokemon again? For God's sake, shut up You know, and you never know when that's going to happen as an autistic person, as a kid in particular, because you haven't got the lived experience to kind of know the patterns. It always seems to come as a bit of a surprise when you get that criticism. It just kind of comes out of nowhere, and you think you've just been doing normal stuff. You think you've been communicating with your friends. And then all of a sudden it turns out, no, you've not been. You've actually been making a fool of yourself. And there's no human being alive would willingly put themselves into that situation. But autistic kids and adults like myself Are expected to do that all of the time because we we get very little you know the phrase to um give somebody the benefit of the doubt? Yeah, you know, what one of my favorite phrases, as somebody who tries to be as reasonable as possible, you know, I I like to give people the benefit of the doubt if I can, until it's proven otherwise very strongly. Autistic people, we don't tend to receive the benefit of the doubt very often. Children in particular. Our actions and our words and our phrasing and our body language and our eye contact are usually interpreted in the worst possible way. By the people around us.

Mark

Because everyone is assumed neurotypical, unless people are.

Pete

And if you're not doing that, yeah, then you're assumed to be deviant or up to something or just weird.

Mark

I don't think we're in a place in society yet. I think we're getting there where people would assume neurodivergence rather than

Pete

We're nowhere near.

Mark

I think we're getting there.

Pete

I think we are getting closer, yes, but it's still a long way.

Mark

A long way to go. I get that. Yeah. So, yeah, so in terms of the fear of the unknown, that is you know, hugely problematic. And when India knew who was going, literally a list of all the people that was going, which is just like amazing, was totally on board because there were no surprises.

Pete

Great, I've had a wonderful thing, and actually, that you know, the even just knowing who's going when you know who you're going to be dealing with, yeah, people you've spoken to before, as an autistic person, you kind of know instinctively. Whether you're going to have an issue with them or not.

Mark

Yeah, I have allies as well.

Pete

Yeah, are they the people that tend to pull me up on this stuff, or are they the people that do give me the benefit of the doubt? And if it turns out it's mostly Other kids that are pretty cool with you, then it's like, oh, thank God. Oh, I'll be fine then. You know, whereas, yeah, if you find out he's going to be with strangers or, you know, relatives that you've never met of the birthday person, you know, and this kind of thing, then all bets are off. Who knows what you're going to be dealing with? Who knows how judgmental people are going to be and how much grief you're going to get for telling a bad joke or for talking too much about Lego or whatever. You know, you're really running a gauntlet there. And that's why we like the information. And that's why the transition of going to the party, if that information hasn't been provided, is going to be the equivalent of asking a child to enter a den of wolves. You know, and like, you know, when you're trying to push them through the door and they're screaming and crying 'cause they don't want to go in.

Mark

And the wolves have party poppers.

Pete

Yeah, yeah, oh, yeah, absolutely. Blue.

Mark

Little party blowers.

Pete

That's the mindset you've got to be in. You know, there's a reason why they are so distraught.

Mark

Yeah. You know, they're not doing it.

Pete

They're not playing up. They're not trying to wind you up. They are as distraught as they look. And in my opinion, for very good reason. Yeah.

Mark

So in terms of strategies for dealing with it, as we said, then detail, you know, understanding what it is and clearing up the ambiguity. I think it's interesting that you put it as ambiguity. And I think that makes much more sense than routine. It's like, just tell me what it is, and I can make a decision. Another of the strategies is sort of having storyboards, you know, social stories. This is what's going to happen, and you know.

Pete

Yeah, the trouble with those are they tend to be very didactic. They tend to be very much of the kind of like this it this is what happens as parties rather than This is what's going to happen at this particular party.

Mark

Yes.

Pete

It treats autistic kids as kind of lacking in nuance. Which is the worst way to deal with, you know, autistic people are packed with nuance. You know, and those, you know, like mass-produced social stories, you know, they are great at some things, but. usually what an autistic kid and adult wants is a tailored, detailed rundown of what this actual situation is going to entail.

Mark

So I was kind of thinking about school in particular because that is more routine based of like in this lesson you will be seeing this teacher and you'll be studying this and then After that, you'll be going to break, and so I mean, Otto really benefits from having a timetable really clearly planned out. It's not a social story in that sense. I think that's probably more for younger kids. because it's more easy to engage with, but it's having that all kind of clearly mapped out, I think.

Pete

Yeah, yeah. And not skimping on the detail. The problem is that as always, we run into the double empathy problem, which is that non-autistic people are going to struggle to imagine what it is we actually need. So, what they'll do is they will kind of do a kind of bodge job. No offense, but it will be a bit of a bodge job where they'll think to themselves, okay, so what could they possibly need to know? Right Well, you know, what I'll do is I mean, I wouldn't personally need to know anything. So, what I'll do is I'll go one step extra and give them a detail. When actually what you probably need to do is like three or four steps extra. You know, it's the difference between saying, so, you know, you'll go through the door and there'll be a party in there and there'll be balloons and cake. And you'll sit down with your friends and you'll play a game. It's the difference between that and saying, right, so you go through the door, and there's going to be probably seven or eight people in there. And you've been in that room before, haven't you? Because you've had a sleepover that time. So if you remember how the room looks, just imagine that many people in there, and there'll be cake probably in the middle of the table, but don't eat that yet.

Mark

Yeah, okay.

Pete

You know, it's going to a level that would, to a neurotypical person, feel ludicrous. Yeah, and you'll feel weirdly self-conscious when you're doing it because you'll be thinking, I don't, surely I don't need to go into this much detail. Surely I don't. I must sound mad. You know, I must sound crazy. It's like, no, no. Actually, you're doing the right thing. If you are thinking you sound like you're going too far, you're probably doing it right. You've nailed it. Yeah, because that's our experiences are that different. And I know this because I can't imagine how it feels to be you. And that level of detail, I think, is enough to sort of get you into the room, right?

Mark

And I think once you're there and you see what it looks like, then because I'm just thinking, you know, there is always going to be things that appear that are not going to be anticipated. No one's going to anticipate that Alvin's going to eat too many Watson and be sick on the floor, right? You're not going to put that in your social story. But I think once you're in that environment and you go, okay, I see what this is. then maybe you're more able to to deal with those sort of other curves.

Pete

You are. And as I said earlier, your stress levels have been reduced because you have

Mark

Been given the heads up, so you've got more capacity for the unknown.

Pete

Whereas, if you imagine a kid that's been forced in against their will and they're crying and they've finally got through the door and they're still really upset and really dysregulated, and then little Bobby pukes on his WhatsApps. That's probably going to be the straw that breaks the camel's back, and they're just going to bolt. You know, they're just going to go. And that's why, you know, they haven't had any slack built into their. their systems. They are rigid and on edge completely because they haven't had anyone sit them down and calm them down and give them the info. So there's no slack. You know, the first thing that happens is going to snap everything. And this is what we see for kids all the time. You know, they go to school and they're so het up that the very first time that a kid looks at them funny, they punch them. Or they run screaming into the toilets and all the teachers are scratching their heads. You know, where did this come from? Wow, that came out of nowhere.

Mark

It's the tip of the iceberg.

Pete

Yes.

Mark

Okay, so other potential. Strategies, we're just going to whiz through because obviously we've got it.

Pete

We need like a special day-long version of this, like 24 hours. I'd love to. We'll have a whole conference on transitions.

Mark

So timers are quite useful. I find with my kids timers for transitions of going, okay, like India again is another one for that. Like, you know, can we do this thing? It's like, I'm kind of doing something at the moment, and I can't really break out of it because you know, maybe I'm working or something. And so, I'll say 10 minutes, and then she'll run off and go get a timer. And I'll see 10 minutes of like, okay, I have to now, I have to now adhere to this. But that's very useful because it's that knowing when that's going to happen instead of just the ambiguity, as you say.

Pete

And you need that warning.

Mark

Yes. Familiar objects is another one of of carrying those into the new situation. So you've got this sort of uh level of familiarity, I guess. whether that's a toy or a fidget spinner or you know some kind of iPads even you know to oh yeah yeah any anything that anything that just reminds you of

Pete

Where you were last relaxed, really. You know, anywhere that gives you like an anchor to your normal resting state of being in a safe space that you know very well. So, for kids, obviously kids can get away with carrying toys, soft toys, that kind of thing. As an adult, you know, I mean, my watch very much fulfills that, as does my phone.

Mark

I was going to ask you, because you recently went to Australia, didn't you?

Pete

Which is like a massive transition.

Mark

I was just wondering how you put in place to help you get through that.

Pete

Well, I mean. there's there's nothing particularly magical, you know, that you do. I mean, I I was traveling alone, which helps an awful lot. But um what I tend to do to be able to cope with all of these travel based transitions that I have to undergo Because I do travel a lot for work, is knowing ahead of time where I'm going, which generally just involves looking on Google Earth an awful lot.

Mark

Okay.

Pete

You know, just Google Maps, just checking things out. I like to know what the building looks like.

Mark

Oh, so you'd like really zoom in and look at the street and look at the the neighborhood? Oh, oh, yeah, yeah, absolutely, yeah, yeah.

Pete

I mean, like, I was traveling to this hotel conference complex in Gold Coast, you know, in Queensland. And I I I knew that at some point I'd want to go to the coast itself, like go to the centre of the city. you know, where the beaches are and all the s all the you know, bars and coffee shops and stuff. I knew I'd want to do that. So I had to really carefully look at, you know, the routes from the hotel to To the town.

Mark

And if you didn't have access to that, do you think you would just not have done it?

Pete

It's very hard to say. I mean, I've only had this weird work that I've got these days, you know, since the advent of Google. You know, how I would have coped before we could do Street View and stuff like that, I don't know. I would have I would have done less. I can say that. I think I would have made it. I would have made it. I'd have got there because of my other things that I do, like making sure that I know exactly how I'm going to deal with Transfers and where I'm going to park my car and all that, like knowing it, absolutely knowing it. Not like winging it, but knowing it. You know, every little bit I know. And I would have got to Australia, but if I hadn't seen in advance the streets and the routes and the map. I probably would have just hid in my hotel room the entire time.

Mark

Yeah, and it makes me wonder how people, you know, before the advent of this level of technology Would have, you know, because looking at an A to Z is not going to not gonna cut it, is it? Right. Well, I mean, it can do.

Pete

Okay. I mean, you know, I do remember, you know, I'm just old enough to remember pre-Google. You know, I mean, I was, I mean, I was born in 83, so you know, most of my young teenage years, you know, it was just physical maps. But I poured over those maps.

Mark

Okay.

Pete

You know, I I badgered my parents for ordnance survey maps 'cause of the detail.

Mark

You could see the constants and the vectors and all of that.

Pete

Yeah, absolutely. And and I I used to just spend hours looking at maps and figuring out Like where roads went and how it all worked. And I think that was in many ways just me making sense of the world, you know, in a more analog kind of way.

Mark

Yeah.

Pete

And I think, you know, people would have always had that. But the fact that we have Street view. Like, use it. Like, you know, if you're a parent of an autistic child, use it to show them absolutely everywhere you're going to be going. You know, just And get rid of that parental desire for surprise, which even I have. You know, I have like, oh, I don't want to spoil how cool it is, so I'm not going to show them It's not worth it.

Mark

It's just not worth it.

Pete

You know, just show them what you're going to be doing.

Mark

Which actually, you know, because again, one of the things I was going to touch on is that holidays is that sort of distillation of

Pete

Yes.

Mark

This fear of the unknown of not knowing what people are going to sound like, what it's going to smell like, what's the food, what's it going to look like, how hot is it going to be. And I've not thought about this before. But actually, doing Google Earth and really taking them down that, I think, might have eased the transition.

Pete

Yeah, I mean, I did that for my daughter when we went to Slovenia last summer. You know, we looked at where we were going to be staying. We followed the Google Street View into town down to the lake. Went around the lake a little bit. I showed her some of the best restaurants so that she knew what to expect. And, you know, I mean, I don't know whether it had an impact, but I think it did, because she took stuff in her stride, as did I, because I knew where I was going, you know. Yeah. Which I need. If I don't have that, then yeah, I will genuinely struggle. Like if I find myself in London and I haven't put this work in I mean, I found myself walking around London after giving like a big speech, you know, like being really professional, look at me on a big stage, talking to all these people, and then I leave. And I've got these highfalutin ideas about going for like a nice meal just by myself, you know, going and find a restaurant and sit down and have some lovely food. And after about an hour, I'm nearly in tears walking around London, like totally overwhelmed.

Mark

London must be a sensory nightmare. Yeah.

Pete

Yeah, like totally overwhelmed. Too nervous to go in anywhere because I don't know I don't know how I'm gonna sit down. I don't know where to sit, I don't know what the rules are, I don't know Is this a place where you've got to ask for a table, or are they gonna? And I don't wanna make a fool of myself because I've made a fool of myself all my life and I'm done with that. You know, I hate it. I don't wanna do that.

Mark

And this, I guess, is that you are You have been so dysregulated, or you've become even more dysregulated by just walking around London and the noise and the smells and the sights.

Pete

Your battery's running out, your social battery is running out, but also your phone battery is running out. You've got time pressure, you know, it's noisy, it's smelly, it's loud, it's it's it's too much information everywhere, or you're desperately wanting to find. Which, you know, I would find if I was, you know, working in like a little village somewhere, is a quiet pub where I know I can just go in, I know I can order a pint at the bar, and I know I can order a sandwich, and that's easy. You know, that I I've done that before, you know, but there's nowhere like that in central London. Everything's weird and slightly alien. And yeah, I I suffer for not having done my homework, basically. Wow. Cheerful stuff.

Mark

So another of the reasons that I think kids have difficulty with transitions, aside from fear of the unknown, is conversely fear of the known. Fear of experiences that they've been through before, and they don't want to do it again. Hence, school. That's a big one. That's a huge one, I think. And like, and it makes sense because as adults, we experiences this, even as neurotypicals, like going to the dentist, and I'm not keen on doing a tax return. I'd rather not. Filling out an EHCP form, I'd rather go to the dentist and fill out a tax return. Because I've been there, I've done it, and it's Rubbish. So we we procrastinate and we delay as adults, but we have the freedom to do that. We can do that. We haven't got someone behind us going apart from your tax man sending you emails and stuff. But you don't have someone else just kind of standing over you and having an expectation that You'll do it. That's to a degree self-guided. But for our kids, they have this fear of experiences that they've been through and not enjoyed. But they also have someone pushing them to do it again and again and again in the instance of school.

Pete

Yeah, absolutely, they do. And it's incredibly difficult because when you know that a situation is going to overwhelm you. And as far as you're concerned, there's little doubt about that. The last thing you need is someone continually pushing you into it. But the trouble is, people will continue to push you into it because, number one, they don't believe that it's as stressful as you say it is.

Mark

That's the biggest one.

Pete

You know, people have a tendency to assume that their child is over exaggerating a little bit, which don't get me wrong, they might be doing. But for the most part, autistic kids, you know, they are feeling what they're feeling, you know, and You know, you don't want to be. So, you've got people who are just disbelieving you, but you've also got the people who think that it's good for you.

Mark

Yeah, it's those ones.

Pete

You know, like you've got to go in because you've got to get used to it. Basically, what they do is they apply exposure therapy because they've heard at some point, you know, that if you've got a fear of spiders, the best thing to do is to hold a spider, you know, which may or may not be true. They've heard about that and they know about that and they may have experienced it in their lives because they're neurotypical and they think, well, they've just got to get used to it. But exposure therapy doesn't work. With the social fear that I've taught. Yes. It doesn't work with the environmental fear. It never goes away. You know, you can find Ways of trying to manage it and to like stim it away or wear ear defenders to get it out. But ultimately, it's always going to happen. Yes, you're still feeling that circulation. Yeah.

Mark

So it's not like. Inoculation, that you're just like a tiny bit of it, and all of a sudden you're gonna eventually become galvanized to it.

Pete

It's always exactly doesn't work like that. And I think again, it's the double empathy problem because Autistic people are experiencing this, and we experience our sensory stress, and non-autistic people can only imagine because they don't know what it's like. And they I think they do imagine it to be a bit like vaccination. You've got to be careful mentioning that word when you're talking about autism, of course.

Mark

Oh, God. But let's not go there.

Pete

But you know, we'll I think we assume that, you know, yeah, a little bit of this will help, you know, and and it's just so misguided because it's hard to explain, but I don't think anyone ever gets used to. For example, I'll use my usual old standard semi-joke that I always use. You know, wet socks in the morning. You know, when you tread in a puddle in your socks and your sock feels wet. No one ever gets used to that. You don't. You don't get used to the shock of it and the feeling of ooh, ooh, squelchy, you know? And every human on earth would change their sock at that point. And if they were told they couldn't, they would be slightly grumpy for the rest of the morning until it dried. No one's going to get used to having a slightly damp, unexpected sock. It's always going to be like, ugh, God, ugh, you know, like that. And to expect otherwise is bizarre. Absolutely bizarre. to expect that an autistic person's sensory um overwhelm can just kind of melt away through experience. If anything, as you get older, it gets worse. You know, as things uh as you as your defenses are actually ground down. You know, by the time you get to my age, I can deal with way less now than I could in my twenties. Okay. My resilience for you know overwhelming spaces and noise and brightness and smells is way lower than it used to be.

Mark

Is part of that you understanding more about your neurotype now, though? When were you dying?

Pete

I was 32.

Mark

Okay.

Pete

Thirty-four. And I'd already by that point already noticed. I'd already started to really notice.

Mark

But in your twenties, you hadn't I'm just wondering because I know that you diagnosed Autistic ADHD people, once they sort of understand that they are autistic, then

Pete

Suddenly see all the dysregulating shit that they would and then pushing back on it. So I'm just wondering if that has an impact as well. No, I mean that did happen. Don't get me wrong. That did happen. But I'd already Kind of, you know, looking back, I had already really started to withdraw because everything was too much. You know, in my early twenties, I used to, you know, I played in a band and I was, you know, used to going in bars and playing music and you know, the smells and the noise and you know, horrible, horrible places. And I mean, I didn't cope brilliantly, but I did cope. You know? Yeah.

Mark

Yeah.

Pete

But by the time I was 30 or even 28, 29, there's I just couldn't do that anymore. It's a bit like you're surrounded by a big wall that you've kind of built to try and keep this stuff out. But it eventually starts to erode and fall down, you know.

Mark

So if we look at the fear of the known then, because obviously if it's something that you know they didn't enjoy, you know, like I went on the London Eye and I hated it. It's like, fine, don't do it again. But there are things that you need to do again, right? By obligation or by, you know, to the fact that you have to go to school. That's the big one, really. I think that's the Biggest one is that you there there is an expectation that you go into school. You've got teachers and the government and the LA telling you you have to go into school, and your parents telling you you have to go into school. That's a huge transition for a lot of neurodivergent kids who are currently in school, which is why so many neurodivergent kids are not in school, because it's just become too much. And I don't know how you really deal with something like that for such a prolonged period.

Pete

Yeah, absolutely, because ultimately it is the biggest transition that anyone will c will face in the day. You know, that that morn well you know, even when you're an adult, you've got that morning transition where you go from home to where you're going to spend the day, work, school, whatever. You know, it's it's a difficult transition. And yeah, most autistic kids, if they don't like school, will have some very, very good reasons as to why they won't like it and why they will resist and why they won't want to go. And ultimately, what that boils down to is who's going to blink first? That's how it pans out. Is the school going to blink and actually do something about it? Is the school going to take seriously its duty of care and take seriously the idea of reasonable adjustments and adapting itself to suit the needs of the child? Or are they gonna uh s keep staring, you know, stare the kid down to the point where the kid blinks first? And the and the child will therefore usually do one of two things. They will either literally become a school refuser and simply will not go. And that will lead down the path that we know leads down to tremendous stress for both the child and the parents. Or will the child Acquiesce to being traumatized on a daily basis. You know, that's all it really boils down to. And there are obviously things that we can do. to help a child manage the enormous stress at school. Again, it all boils back down to stress. It all boils back down to what I started by talking about with Environment and social strategies. You know, so those two things again. So, so, yeah, we we as parents, we can We can do what we can do. We can advocate for our child with the school. We can meet with them. We can talk to them. We can try to guide the school down the path of reasonable adjustments. Show them and tell them what their child needs. And that can work or it might not. It depends entirely. It depends absolutely entirely on the personality of the people you're talking to.

Mark

Yeah, it really does. It makes a case. It really does.

Pete

Because usually the stuff that you're asking for is free or very, very cheap. And usually it doesn't even take that much time. So it's not like you're coming up against barriers of money often. I mean, sometimes you do, sometimes you do, admittedly. But often it's just stuff like. You know, can you, for example, let my child leave lessons two minutes early? Can you? You know, give my child the ability not to have to wear a tie, you know, like gift them with that boon, you know, that we'd have to wear a tie to school. You know, and these are things that are free. They are fundamentally free. They are Entirely dependent on the personality of the school and the people within it.

Mark

Yes.

Pete

As to whether they're willing to be that flexible.

Mark

And I guess as parents, you have to have Confidence and you have the energy to be able to request those accommodations for your kids, and to know that that is perfectly reasonable because I think. I think early on, when you're maybe not even sure of your child's neurotype, and maybe you're still really trying to work out what this looks like and how it presents in your child To go to the school and say, look, I need my child to leave five minutes before the end of the school day because coming out and in amongst 200 other kids is incredibly dys dysregulating and leads to meltdown. Like early on in your schooling career, that is a big ask to to do.

Pete

It is indeed. The the good news is though, in some ways, if you are the parent of a suspected neurodivergent kid, There is a bit of a I've got to be careful here, but there if you start to kind of cut your teeth on this at nursery, you know, start to get a bit of experience. in asking for this stuff with yeah, well, l honestly, honestly, like, you know, just just start small with nursery stud you know, teachers.

Mark

And he have his cereal and his milk in separate bowls.

Pete

Exactly, and just get used to it. But you're right. Ultimately, most parents don't have the confidence because they don't have the understanding, not because they're foolish or anything. No one's taught this stuff. You know, you weren't taught this stuff at school. No one came into school and said, hey, here's what autism is, you know, just in case.

Mark

It's sort of discouraged from rocking the boat as well, I think, when you're dealing with something of that scale. Because school is a big operation. In terms of the magnitude of school and the number of people, you know, it only really works if Everyone conforms, right? That's the whole reason for all of this. And so, for you to sort of put your hand up and go, actually, I'm going to make a bit of trouble here by asking something.

Pete

The thing to remember always to any parents listening, if you're out there, listen. You're not alone. No, no, no. There are dozens in your school alone of, yeah, of parents, of autistic kids. But what happens is, we are divided and conquered. we are spoken to individually and treated like we're all asking individually for special dispensation, when actually all we're really trying to do is to get the schools to adhere to their basic requirements, which is accommodations for students of all all various types. And we're doing that really technically as a collective, because there will be more than one autistic child in the school, obviously. But but they like to make you think that you're on your own and that you're being unreasonable. And and look, at the end of the day, what this boils down to, as far as I can see, and I said this in London yesterday. We are st the school system is still very soaked, I think is the right word. Soaked. in its social history of being a charitable good established by the establishment for the betterment of the poor. Yes. You know? And even though now in 2025 we know better than that, and we know that actually having an educated populace is definitely beneficial We want that anyway. Free education should be a no brainer because everyone needs to be educated to a certain level. We know all that now, but we're still stuck in this old Victorian mindset that ultimately Look, as the government, we're doing you a favor here, so stop asking for anything extra. You know, how rude are you? We are providing your child with free education. And here you are demanding more. Yeah. You know, and I really genuinely think on a subliminal level that is still there. And there is a resistance within SLTs, head teachers, the very establishment, the Department for Education itself, to actually recognize that they are bound. To actually do more. They need to do more. They have to do more. And that it's not good enough just to be like, well, you know, this is what you're given. This is what we're going to do for you. Because, you know, look, we're doing you a favor. Ultimately, that's the shift that has to happen. And it's a very difficult shift because it's culture. It's a cultural shift.

Mark

Yes. Yeah, yeah, yeah.

Pete

Where the education system has to kind of back up a little bit and recognize that it is. It is not a moralistic social enterprise, which is, you know, you know how the Victorian Landowners and mill owners have this moralistic, paternal kind of way about them. You know, we know what's best for you, poor folk. You know, we know what's best. We'll sort you out. Don't you worry, kind of attitude. I think that that still reverberates within the halls of education. We know best. We are the experts. We are in charge. We are doing this for your own good. A very utilitarian kind of angle.

Mark

But also that sort of metamorphosized into you'll take what you're given.

Pete

You'll take what you're given and be glad of it. Yeah, be glad of it. Like Mr. Bumble in Oliver Twist.

Mark

Having said that, if you get someone who is open to your advocacy. It's phenomenal. And like my kids' school have been amazing for that. I mean, I'm like three kids in now, so they're just

Pete

They're yours.

Mark

They're used to it. The relationship that I have with them is wonderful because I am very vocal and very, you know, collaborative, and I will send emails. You know, regularly going, here are the reasons that Otto was so dysregulated, and here are the things that we can do to help. And, you know, even things like just saying, look. Can he and India come out? Can I get pick him up a reception rather than the playground when hordes of children are like pouring out school? And they were like, yes, absolutely fine. And that tiny accommodation has made the world of difference. Because they don't come out and simulate. So just have the confidence, I guess, to advocate for.

Pete

Yeah, and you do get that, but it becomes a bit of a post-code lottery, you know, where. If you're lucky, you'll have like there'll be an individual Senko or a little group of teachers or an autistic teacher who knows all about it, you know, and that's like striking gold, you know, because you've got an ally, that's someone who will do what they can. But if you haven't got that and you just met with the brick wall that so many parents are met with, you know, a kind it's ooh, you know, it's it's it's horrible Experience.

Mark

I like this idea that you came up well, I didn't come up with earlier, but I like the idea you articulated earlier about like parents of autistic kids sort of Grouping together, forming a mob. Maybe not a mob, but advocating as a collective rather than to say, look, these are commonalities between all of our kids who present very differently, but here are the things that you

Pete

Yeah, but there are some basic commonalities.

Mark

Yeah, that's an interesting concept I've not really thought about.

Pete

I don't know. I mean, ultimately, I think what you'd want if that kind of thing did exist would be for it to be like, I don't know, a community company or something, and for it to do training for teachers. You know, getting that not because you know, for me, that's what it boils down to: it's knowledge.

Mark

But then the most enko's meeting with having one meeting with lots of people rather than lots of meetings with one.

Pete

Oh, absolutely, yes, yes, absolutely. I see what you mean. Yeah, yeah. And that's something that really isn't explored. You know, everyone is very isolated and alone. You know, everyone feels like they're having to fight. And everyone always talks about how, you know, you've got to start from the beginning every single time. You know, and you get fed up of having to explain it all again. Whereas if it was like a collective of you, it's like four or five parents, ten parents, or something like that.

Mark

And you're all just like, well, yeah, of course, you know, this is this is this is because also when you when you first sort of when you're first starting out as a pair of a neurodivergent You're sort of looking around the playground to identify other parents of neurodivergence and looking, and you will possibly look at how their child emerges from the school and go, Oh, that might be one of ours, but they don't know it yet. They might not know it yet. Or you just look for this like far away, harrowed look in the parents' eyes. That's one of us. That's one of us. And then you sort of like tentatively raise it. So I know I know some of the parents. I know some of the kids whose parents don't realize it yet, so they're not, you know, yeah, it's a delicate shame.

Pete

It's even more difficult if you're autistic yourself as a parent. Oh, yeah, of course. Because then you've got that whole extra layer of you know the social challenge, that social stress. Like, you know, I'm not going to go up to somebody in the playground, another parent and say Hey, is your kid autistic? You know, because I know I'll get it wrong. I know I'll tone it wrong, you know, and I'll sound like I'm insulting them or something. And there is still so much stigma around it. That people can be very defensive and very isolated just by the actual stigma. So, you know, you can have parents who know that their kids are autistic but don't want to tell anyone because they feel a kind of taboo or a shame attached to it. you know, and and that that that makes things very difficult too. And of course, at the centre of all of this is is children struggling to get into school every day, you know. And we we need to get rid of that stigma. We need to recognize and realize that it is a natural part of the diversity of human thought and experience. There's nothing like inherently bad or wrong with being autistic or Or even ADHD. And I say that as somebody who finds an enormous amount of stress in being ADHD. But you know, we need to rise above all of that because ultimately our kids are the ones at stake. Yes. They need us. They need the adults in the room to do this for them properly and to take it seriously and to. fight for the change that they they can't really fight for.

Mark

Yeah, and it is just speaking up. It's just speaking up, isn't it?

Pete

Is the other way to do it.

Mark

So another of the potential issues that our children have with transitions, I think, is around well, sometimes can be processing issues. So I've found this, particularly with Otto, this one, is that if you give him too many instructions He can't process it and he gets overwhelmed, and it's just a no. And it's taken a while to learn this because you're so, you know, you're a parent and you're rushing around, and then you will sort of say, right. Get your shoes on, get your coat on, don't forget your bag, and can you put your dish by the dishwasher, right? That's a lot of instructions. That you and you're just still barking them at them. And early on, I think that was a trap that we fell into. Oh, I certainly fell into his parents. Because you're juggling lots of stuff I've got three kids. It's carnage. You know, who says, like, right, I've given you those instructions, and obviously, you're just going to do them Because that's what I expect from you. So you're placing expectation on your child. And but what you're not understanding, or what I didn't understand in those days, is that every one of those is a demand And every one of those needs processing, and Otto doesn't process instructions as efficiently as I expect him to.

Pete

Yeah, I mean, it's a very common thing that autistic people are described as having, yeah, slower processing speeds. I mean, I, for example, I can't. Personally, follow yoga or exercise videos. I've tried. During COVID, I tried. Okay. But I can't do it. I can't follow that flurry of verbal instruction. And for many, many years now, I've been pondering this and working, trying to work out what's actually going on here. Like, is it a deficiency, you know, in in our brains? Or is there something else actually happening? And I personally suspect that it's related to the social stress that I talked about earlier. I feel like when I'm given a list of instructions by somebody, especially if there's emotion in the voice, you know, like they're stressed, like you were talking about being a parent, you know, busy parent. then most of my energy in interpreting those instructions is diverted away from what the instructions mean. to what the instructions are going to lead to if I get it right. Okay. And overthinking then ensues. Like basically, I am immediately overthinking, and that slows my processing.

Mark

Well, like it's a test. You know, I'm setting you a test, and if you fail it, and then your mind just kind of especially Otto's who catastrophizes.

Pete

As an autistic person, everything's a test. Or at least it feels like it because of how much grief we get when we get things wrong. You know, like it elevates everything to the level of everything becomes high stakes. Yeah. Everything. I can be given a flurry of instructions. If I focus my ADHD brain onto the individual instructions as they come, one, two, three, four, like I can play video games without any problem. Yes. And they tend to have a lot of you know, visual instruction happening all at once and auditory and stuff, I can do it because it doesn't feel very high stakes. If I lose a life, I'll lose a life Yeah. You know, like if Sonnet the Hedgehog falls down the hole, I just get to try again, and that's fine. Crucially, Sonnet the Hedgehog is not going to scream at me for being an idiot who's messed up.

Mark

Yes. Okay.

Pete

Do you know what I mean? Yeah. from a very early age, really frighteningly early age, autistic children learn that they are very prone to getting things wrong because of our misunderstanding of social cues and mis mishearing and misinterpreting them. Things, and that adds a massive layer of stress onto any instruction given to us.

Mark

And I'm just thinking back now to when, like, in the early days, when I would just get exasperated. I'm not proud of it, but as a parent, you'd be like, dude, put your shoes on.

Pete

Absolutely.

Mark

I just asked you to put your shoes on like five minutes ago, and we're all ready to go. And what I'm not really understanding at that age was that. The sort of accumulation of dents to his self-esteem that has happened to the point that he's got to that, that this is just another failure for him. So Yes, it's this transition is more loaded because it's an exam that he's just not going to get right, or if he gets wrong, it's going to blow up in his face. And if you get it right.

Pete

Nothing really happens. There's no reward.

Mark

If you get it right, you've got to leave the house, right?

Pete

You go to the doctors, you know? It's like, oh my God.

Mark

But then you've got another issue to deal with.

Pete

Yeah, absolutely.

Mark

Yeah, that's just really, I've just sort of realized how. how bad of a parent I was for Otto. Oh, no, no, like not I did know him better, obviously, but how unconstructive that approach was for Otto back in those days. I think Jay was a bit more He was more capable of handling that kind of instruction, I think. There's all kinds of PDA issues going on with those remotes.

Pete

So that's that's a whole separate challenge. The other thing to bear in mind as well, of course, with autistic people and processing spoken communicative information, you know, processing that is the fact that much of what you might see as automatic, like for example identifying humor, identifying sarcasm, identifying the most kind of pertinent point in a sentence, that kind of thing, can be a bit more tricky and a bit more manual for us. You know, and I I like to make the point that for many of us, when somebody says something to us, whether it's an instruction or anything really, we have to kind of scan it a bit like your computer's antivirus does.

Mark

Yeah.

Pete

You know, like an incoming email. And anyone that's, you know, got a overzealous antivirus on their computer will know how much it slows everything down.

Mark

Yes.

Pete

You know, like your whole system starts to crawl, you know, as Everything's being scanned. And for me, it's actually a bit like that because you know, if you were to give me an instruction now, a big part of my brain would be scanning it for, did they mean that?

Mark

Where are the traps?

Pete

Where are the traps? Are they being sarcastic? I didn't expect that. So there must be something going on here. What if they actually want that other thing? What are they not saying that they actually still want me to do? You know, and that's a particularly big thing in this country, because so many instructions in Britain and in British culture, English in particular Are unspoken and hidden and passive-aggressive, as I would tend to put it. You know, and therefore, you're having to scan everything for that as well. And again, even at an early age, you learn this stuff. You know, you learn that you're not really allowed to ask for anything. And people, if they want something, will ask for it in the weirdest ways. And you've got to identify that somehow. Yeah. And it takes up a lot of bandwidth and slows you right down.

Mark

I've got a good example of this actually with Otto because He loves football, absolutely loves playing football. And in the summer holidays, we sort of booked him onto a football club. They're very neurodivergent friendly. Brighton and Hove Albion run a football club. They're amazing. I've been in the community, very active. And he's been before, and I know he likes it. He had a wonderful time. He needed to know, sort of going back to the kind of fear of the unknown. He needed to know that how it looked and what they were going to be doing. But once he got there and he saw it, he enjoyed it. because they play football and that was great. I booked him on again this time round and he was really like he saw it on the calendar because we do visual timetable. He saw it on there and he completely melted down and ran upstairs and hid in his room. And I was like, what's But you enjoyed it like you won a medal, you know, and you heard you were really proud of yourself. So I sort of went and unpicked it. with him. And I was like, which part of it is, you know, the the problem? And he was like, well, he said a number of things. One was being in the change rooms at the start. Because he will walk in and there will be people in there, and they'll all look at him, and he doesn't like being in the center of attention, and he doesn't know who's going to be in there. I'm sort of reading between the lines here. And change rooms are kind of noisy and echoey. So that's so all of these things have triggered him previously. But the other one which was quite interesting was that he didn't like doing you know, they do training drills at the start of any football thing. They just play games to get people warmed up and to practice some techniques and stuff. He hated that. And I realize the reason he hated that is because he's getting fired a load of instructions. Well, they'd be like, right, what I want you to do, right? You, your teammate, your team B, you go to the end, dribble the ball down to the end, pass it to your team, mate, run back as quick as you can, and then pick up a bib, put it on a cone. Do a twirl and sing the national anthem. I mean, I don't know if that's actually what they did, but that's how I imagine it goes. And so Otto had previously just had Just overwhelm, I think, because there's so much to get through that I think he obviously didn't succeed as much as he wanted to succeed in that. So that was just completely overwhelming to him. So I was able to then understand that and then say, okay, okay, how about if I get you out of that bit, right? If I can talk to them and say you don't have to do those first two bits. You just play football because you know football, you know what the rules are, easy to do, run around, enjoy it. And then he just lightened. He was like, Yes, please do that.

Pete

Yeah, that's exactly it. I explained it to them.

Mark

So back to the advocacy. I explained it to them and said, This is what he needs. Is that okay? And they're like, Of course it is. Yeah, of course it's okay. He can help me put the cones out or whatever while they're doing the training. Brilliant, fine.

Pete

Yeah.

Mark

Did it and absolutely loved it for three days. And it was just making those accommodations. Again, as you say, totally free, making those accommodations to sort of lean into his neurotype. And it made a massive difference.

Pete

Yeah, absolutely. I mean, my abiding memories personally of, you know, that whole kind of world of Sport, PE, football, was always overwhelmed at the instructions and also overwhelmed at just how lacking in patience everyone seemed to be.

Mark

Yeah.

Pete

You know, there's patients in the classroom, but for some reason patients just seem to disappear. When you when you're a boy, you know, when you're a boy playing a sports game If you can't do it, you're treated like some kind of absolute weird. Like, what the hell is wrong with you? You know, like, because I couldn't catch, I couldn't, I know that I could have done all those things if I'd been taught how to. Yeah. You know, but nobody ever did because I couldn't do them naturally or I hadn't figured them out for myself. And therefore, I was just treated immediately as a failure.

Mark

And then every time a ball comes to you after that, it's like extra loaded, right?

Pete

Yeah, yeah, because you're just like, oh, not only am I going to like miss and make a fool of myself, but I'm also going to be hated by everybody here. You know, my teammates are going to think I'm awful, and my opponents are going to laugh at me. I mean, God Almighty, wow.

Mark

You know, it's rough. You're getting sticky about it.

Pete

I am. Yeah. I mean, I. And the sad thing is that I love a kickabout.

Mark

I really, really love kicking on footballers. It's a lot of difference, though, isn't it? It's sad.

Pete

But yeah, couldn't could not handle that.

Mark

This is like loves football but can't do professional like can't he he he can't play in a competition. As soon as he does that, he goes to pieces. Because of that expectation, it's not all rubbish. So, the positives, I think. Issues with transition, I think. I mean, there aren't many positives. It's difficult for the kids. It's difficult for the parents, especially when you're in a rush. But one positive I could take from it, I think, is that my kids' difficulties with transition were one of the early signs that I had that they were neurodivergent. It was something that was quite noticeably different. And yet, quite noticeably anxiety-inducing in a way that it didn't seem to be for others So I guess that's a positive I could take from it. It's a little flag that's being waved early on for neurodivergency.

Pete

Yeah, yeah, absolutely. I mean, for me, it's I'll touch on something that we're going to explore in the second episode, you know. Because for me, the reason why autistic people struggle with transition is also exactly the same as why we're so good at some other things.

Mark

Yes.

Pete

It's like you can't have one without the other, and therefore, the presence of transition difficulty actually implies some tremendous strengths. The key one being our ability to focus, hyper focus on something and learn so quickly and derive deep joy from an activity that we are fully engaged in. And yet, that can mean that we struggle to leave that thing. and struggle to move on to something else you know singular absolutely we'll talk about that in great detail you know the whole world of monotropism if you don't know what that is then You know, there's something you need to know about that, you know. And yeah, you know, for me, it's actually, you know, my inability to transition is stressful and makes me miserable. But the flip side, my ability to hyper focus and be creative and dive deep into something is my favorite thing about being autistic. You know, it's this double-sided coin going on here.

Mark

Yes.

Pete

That you know, you you got to take the rough with the smooth. And I wouldn't have it any other way. I would rather struggle with transition. Honestly, I would rather that than not have that monotropic single

Mark

Minded focus that I go into.

Pete

Because if I didn't have that, I wouldn't be me.

Mark

Yes.

Pete

You know, I wouldn't be recognizably me and I I don't know what that would be like, you know. So so yeah, I I I'm personally willing on my own terms to take it to take it as a kind of Pros and cons kind of thing, you know. I can do this, but that means I can't do this. Okay, fair enough, fair enough.

SECTION INTRO

Neurodiversity champions

Mark

Okay, neurodiversity champions. Now, these are any organizations or people who are doing wonderful things in the world of neurodiversity. Have you got anyone you want to champion for us, Pete?

Pete

Yeah, I think based on what I did yesterday, I want to bring up the rally I went on yesterday, which was looking at fighting for ordinary.

Mark

Yes, I love it. Fight for ordinary.

Pete

And that's the kind of name of that whole push that they're they're undergoing. It's a number of SEN specialists and people like that involved. But but this idea that we have to that we find ourselves having to fight for just the bare bones, for just the basics of education, the basics of the workplace when we're adults as well, of course. Just we're always scrabbling for that. And it's exhausting, but it's also really empowering to see, for example, yesterday so many people Doing that.

Mark

Great.

Pete

You know, so many people in London on Parliament Square just demanding that autistic young people, autistic kids. disabled kids, SEN kids of all of all types and experiences are are given the respect that they deserve and the education that they deserve. So yeah, I really wanted to highlight them, you know, doing some fantastic work and pushing and pushing and pushing all the time. And I was delighted to work with them.

Mark

Yeah, and thank you for lending your voice to that as well, because obviously the more people that can speak and advocate on behalf of our kids who aren't currently able to do that for themselves is the better.

SECTION INTRO

Tiny Epic wins.

Mark

Okay, tiny epic wins now. These are the things that in a neurotypical family would seem run of the mill. No great shakes, but obviously for our neurosymbolic families, they're an epic win. So have you got any tiny epic wins from your Neuroverse?

Pete

Well, I mean, you know, related back to what I was saying earlier about my daughter kind of, you know, blowing me out the water in terms of you know, getting on at school. She she she was voted the uh the House captain. She's in year six, so she's now finally uh has that that that honor. So she was up against a few of her friends and and she was voted by her peers as the person in charge of the whole house, you know, all the way down to reception. So, I mean, I just couldn't believe it. You know, like like sh she started there so late, you know, because of COVID and home schooling. and it was a difficult transition and she's just absolutely blossomed and now getting things like that going you know, and it's just just incredible. And I could never have done that.

Mark

I was gonna say, could you watch can you imagine being in that situation?

Pete

Not at all. Not putting myself through a popular vote.

Mark

You'd have had one vote, Pete. And that would have been you.

Pete

No, I wouldn't have voted for myself.

Mark

No, true.

Pete

I had nowhere near enough self-esteem to do that.

Mark

Sorry, we've had a recount. You'd have had no votes, Pete.

Pete

No votes. Apart from maybe the nice, kind dinner lady felt sorry for me.

Mark

You know, um, I've got I'm gonna refer to the tiny epic when with Otto and the football thing. Not for them and their accommodations, but actually for Otto being able to articulate what he needed. And I do this every now and again.

Pete

Absolutely.

Mark

He does seem to be getting better at being able to. articulate what he needs. So obviously he was very overwhelmed by it. And I gave him a bit of space and then I sort of went up and I was I was actually quite surprised that he was able to tell me so clearly what it was because that really kind of changes the dynamic between us as well in that we're a team, right? I'm not I'm not sort of speaking on his behalf. We're speaking together as a, you know, we've had a committee meeting. Team Auto have decided that these are the things that we can do to accommodate for him. And also then to be able to see the success off the back of that, that he was able to do it and it was enough for him to be able to enjoy it. I think that's a huge win for me.

Pete

It is. And it'll only increase as he gets older, you know, because, you know, as we get older, we get better at advocating for ourselves, you know, better at communicating our needs. So, you know, you'll probably notice well, until, you know it's that teenage wall of not wanting to tell you anything. But you know, it it is something that that that does tend to happen in in many, many cases, you know, that that that Insight increases and things get a bit easier, I think, as a result of that.

SECTION INTRO

What the flip?

Mark

Okay, so what the flip moments now. These are the moments where our neurodivergent Children will say or do something that completely stops us in our tracks and renders us helpless with confusion. Have you got any what the flip moments for us, Pete? To be honest with you, most of them come from me.

Pete

Yeah, my daughter tends to be pretty much on top of things most of the time. is often the one but bas basically she uh she tells me off for risking being late in the mornings to school you know and and it's usually because Um, I've been arguing with somebody online or something like that, you know, and she'll get very grumpy with me.

Mark

So, you're the one having issues with transition getting out the door.

Pete

Oh, yeah, yeah, yeah, yeah, absolutely, yeah, yeah. Yeah, she uh she she's all ready, she's all organized, and then uh I'm the one messing everything up by forgetting to do a bottle of water or you know, something like that, and and I I feel like a dreadful, dreadful failure of it. Of a human being.

Mark

No wonder she made house captain.

Pete

And so I mean, yeah, she's got a power trip now, so she's she's on top of everything that goes wrong.

Mark

So everything she knew about managing chaos.

Pete

Yes, absolutely. So, yeah, yeah, in my household, it tends to be me who does those things.

Mark

I've got a couple of what the flip moments. One was Otto that sort of encapsulates. Sort of the processing thing that we were talking about earlier, where he looked really uncomfortable. He finds it very difficult to understand when he's hungry or when he needs the toilet and that kind of thing.

Pete

Interoception.

Mark

Yeah, interoception is a big kind of sticking point for Otto a lot of the time. And he looked really uncomfortable and he was starting to get quite emotional. He seemed quite dysregulated. So I was like, oh, I know what this is. So I was like, do you need a Wii? And he went, I don't want a we. And I was like, well, do you need to do a poo then? And he went, no, I want to do a we. It's like, okay.

Pete

It's that, yeah, there's a delay there. It's that, you know, just having to you know, those games where you have to drop a marble and there's loads of pins and it has to go like bagnet. Blink, blink, blink, blink. Yeah. Or that that T V show on I T V, you know, where they do it or whatever. Um, I always feel like it's a bit like that.

Mark

Like it takes time for the thought to percolate down and then it will land in the little asking the question about the poo straight away afterwards. I still have been waiting.

Pete

The ball's still dinking around. Yeah.

Mark

The other what the flip moment I had with Jay, which is another classic Jay moment, where he'd broken the blinds in his bedroom and I fixed them. And he went, You're the best. Well, not the best, but you're very good. It's a paradox. There's always a better person if the universe is endless.

Pete

Nice. Philosophical.

Mark

Just what you need. Philosophical SmackDown. It's like you could have just stopped at your best, couldn't you? You didn't have to qualify it. We all know that there are better people. It didn't need Sane, did it?

Pete

No, but it's that love of love of clarity and transparency, you know.

Mark

And he left me very clear as to where I stand in his esteem. Okay, so that is going to be it for part one of our Delve into transitions. Firstly, Pete, thank you so much for coming to join me.

Pete

No problem.

Mark

Also, I wanted to say a huge thank you to the Neuroshambles listeners for Continuing to download and spread the word and mention lovely things on the socials. Thanks for that. If you want to contact us on the socials, you can get us on Instagram or Threads or Facebook. Or TikTok, so please feel free to check us out there. I think that's about it for now. I need to gather my thoughts in time for part Two which will be coming up soon. So until then, have a nice life.