Difficulty with transitions - Part 2 | Pete Wharmby

EPISODE TRANSCRIPT

Mark

Hello, and welcome to episode 46 of Neuroshambles. As always, it's an absolute Pleasure to have you here, Neuroshamblers. So, thank you so much for joining me. This is part two of a two-part episode. So, if you haven't listened to part one yet, that is the previous episode, episode 45. You might want to check that one out first. This episode, we're going to be focusing on more of the same stuff with my wonderful guest. We'll also be looking at some neurodiversity champions, some tiny epic wins, and some what the flip moments. So let's wade into it.

SECTION INTRO

Meet the guest.

Mark

If you listened to part one of this topic in the previous episode, our guest this week needs no introduction, but I will give him one anyway, because otherwise that would be incredibly rude. He is an author, a trainer, a world renowned public speaker, and a beacon of advocacy for neurodiversity. I am once again chuffed to bits to have him back on the show. It's Pete Wharmby. How you doing, Pete?

Pete

Hello. Yeah, I'm fine. I'm good. I'm, you know, just rattling on as always.

Mark

Again, we'll just have a very quick recap of your neurodivergent setup over there.

Pete

Yes, yeah, of course. So it's. Myself, Autistic ADHD, and then my daughter, who is probably Autistic, probably ADHD, hopefully continuing to sleep downstairs. Fingers crossed.

Mark

It won't be the first interruption we've had from a disgruntled child.

Pete

Indeed. I don't know how loud I'm being with the headphones on. You know, for all I know, I could be like shouting through the house. and she'll be like what daddy what on earth but we'll see um so so yeah and she's at school and primary school and I work from home obviously but I travel a lot so you know there's there's complex factors there but generally speaking we rub along pretty well You know, there's a lot of understanding under this roof. You know, we know what it's like, and that does help a great deal.

Mark

That's so important, isn't it? Yeah. Okay, thanks for that. We've got lots to pick up on from the previous episode, so let's get started.

SECTION INTRO

What's the topic of the week?

Mark

Now, as we discussed in part one, although our neurodivergent kids can share wildly different traits and presentations, I think one of the Few things that unites them all is the fact that they can find transitions between different activities difficult. And we started in the previous episode to look at some of the different reasons for why they can become dysregulated by transitions, and we also suggested some potential strategies that can be used to help make it easier for them as well as for their teachers, parents and peers And we sort of got so into it that we overran. So so we went into a part two, which is good. I prefer it that way than than having to kind of edit and truncate stuff. You know, I much prefer to explore conversational avenues. Until they reach a dead end and then. Which they will eventually, you know. Yeah, they will, exactly. So we looked at fear of the unknown in the previous episode, fear of things that they already know are going to be dysregulating, and a reluctance to get back into that. We also looked at the role that processing issues can play in this. Now in this episode, we're going to pick up where we left off by exploring some more reasons for potential difficulties with transition as well as some other possible strategies we can use for them.

Pete

Absolutely.

Mark

So one of the ones that is, I think, quite a major difficulty, certainly with my kids, but I think a lot of people experience this is pulling our children away from something that they're enjoying doing seems to be really difficult from a parenting perspective and from the children's perspective. I think it's it's it's very prevalent with the daily battles that we have. I think it presents itself very regularly every day. Certainly does to me. Particularly when it comes to things like screen time. That seems to be quite a trigger for a lot of parents of neurodivergent kids. Mealtimes is another one, and bedtimes and bath times, all of these sort of anything that has times attached to it.

Pete

Bath times, bed times, meal times, bad times, good times. You know, yeah, they are all a challenge. They all present the crucial thing, which is moving from one. set of circumstances to a new set of circumstances, which is ultimately why so many autistic people struggle with with with transition including you know including adults like myself. So so yeah, yeah I mean, I think we touched on it at the end of the last episode, didn't we? With the monotropism.

Mark

Yes, very briefly, yeah.

Pete

Yeah, which is, you know, why I think it's good that we've got this other episode, because. you know as a topic it it stands by itself and we could probably talk about it all night but yeah yeah it's it's an interesting thing this whole you know how do we get autistic kids to stop doing what they like doing and i think We have to start from the very basics stuff, which is first of all, of course, generally speaking, children like to carry on doing fun stuff. You know, yes, autistic or not, that doesn't matter. You know, human beings generally like to continue doing the thing that's enjoyable and children will struggle more because they are less aware of the ramifications or the. Consequences if they do, you know, so you know, there's going to be a battle there. Every parent on earth can relate to that battle, you know.

Mark

And it's typically out of their control as well, I guess, because it's been imposed upon them, as you say, the times, the meal times, the bedtimes. It's it's a routine that's imposed upon them by the parent.

Pete

Yeah, but the interesting thing is you see because of this universality because every child of any neurotype has this difficulty What tends to happen as far as I can see it from the parents' point of view and from the point of view of teachers especially is that when an autistic child shows this same difficulty in transitioning It is naturally assumed to be for the same reason as it is for a non-autistic kid, if that makes sense. So a non-autistic kid, you know, or indeed. Any kid given the circumstances will, for example, want to keep playing a video game. Yep. That's fair. So, you know, a kid will just want to carry on playing. They're having fun. It's enjoyable. They want that next hit of dopamine. They're looking forward to seeing what happens on the next level. They want to get to the boss. You know, all of this stuff is happening. And that is universal. That's all children, all humans. Neurotypical, neurodivergent, doesn't matter. And that, of course, is where we end up with those disagreements where, no, you've got to stop now, but I don't want to. I'm enjoying myself. No, but you've got to, but I don't want to. And that, you know, rightly, I suppose, can cause all kinds of kerfuffles and arguments and.

Mark

detentions at school and go to your room in home and that kind of thing.

Pete

But I think the interesting thing is, as I say, parents, teachers see that as being what's going on always. When actually for an autistic kid, yes, that is going on. It would be foolish to claim it isn't because it is to an extent. But there's a whole world of other stuff going on too, which is likely. to be the factor that's causing it to be so much more difficult for them to remove themselves. You know, it's not just a simple case of. but I don't want to. It becomes a case of, but I actually can't.

Mark

Right, okay.

Pete

And that is, I think, where parents and teachers struggle. because this is one of those ways that autistic people are genuinely very different. You know, it's a real marked. Difference in how our brains work, in how we pay attention. And it's because of this idea of monotropism, of us being monotropic.

Mark

Yeah, so for the listeners of Neuro Chambles who haven't sort of heard of this phrase before, it's something that Kieran Rose and I discussed. In the episode of that conversation. And I found it really interesting. So, could you just kind of recap monotropism? Monotropism or monotropism? I don't know. I've never corrected

Pete

Yeah, I've always called it monotropism because I'm you know the whole trope trope sound makes sense you know exists sales web I know that other people some other people say tropism some say tropism I don't care. You know, I'll just say tropism, monotropism. Just because otherwise I'm always second guessing and then I get it wrong anyway. So yeah, monotropism is the. theory that was put forward by a group of neurodivergent researchers back in the late 90s early 2000s Dina Murray Mike Lesser And oh my goodness, my names are terrible at this point. I even met them in Australia just a few months ago and I can't remember their name I feel dreadful. This is just ADHD brain. You know, it's just the way it goes. And the three of them came up with this idea of monotropism, which is based around the concept of attention being a finite resource. for autistic people in one way, but it also being paid to things, attention being paid to things in a really different way to how non-autistic people pay attention to things. So the theory goes that autistic people are monotropic. We pay attention to one mono thing at a time in great, great depth and great detail. Whereas polytropic people, non-autistic people, pay attention to that basically they can kind of have a more stereo sound kind of awareness of what's going on around them you know there's there's multiple things going on and they're all going into the brain at the same kind of rate and therefore, you know, any changes or any variations can be adapted to immediately.

Mark

Right. Okay.

Pete

I usually illustrate this by giving usually non-autistic people a scenario. I'll say to them, imagine that you're sitting. on the sofa reading a really good book and the doorbell rings and non-autistic people when I ask them what do you do They will look at me blankly and say, well, I'll answer the door, obviously, which is what I want them to say. Because, yeah, they've walked into my trap there, you see. Because, yeah, of course, that's what you'll do. You'll answer the door. But what I'm getting at really, of course, is the fact that for me, for example, as a monotropic person, I might not be able to do that. You know, at a very fundamental level, I might genuinely struggle with that. Usually, one of two things will happen. It's possible I won't even hear it because I'll be so engrossed.

Mark

This is so familiar. Yeah, Otto has this a lot. Yeah.

Pete

Yeah, yeah. It just, you know, my attention is so wholly. tunnel visioned onto the thing I'm doing the book that nothing else can penetrate or and this is probably more likely to happen because I'm also ADHD so it's hard for me to stay in that total focus yeah Or I will hear it but not be able to act on it.

Mark

Right. Okay. So what goes on there then? So you register as a to-do item in your region.

Pete

You've registered, yep. Absolutely. It's all registered. It's logged.

Mark

Okay, but you're not ready to do it yet. And also, as I was saying, this is really familiar with Otto because where if I tell the others that dinner's on the table I have to tell Otto in a different way. Like the others will respond, and we'll get on to how that happens because it's tailored individually to them in terms of how I tell them. But with Otto, he won't respond. So, I have to then go there just to make sure that he's actually giving it that attention. So, what is going on then? I'm really interested in that little period.

Pete

Well, I mean, it's. It's a thing that I feel every day, you know, because I try to go from one thing to another, obviously multiple times a day. And it is easiest to describe it as. the process by which an oil tanker might change direction.

Mark

Okay, yeah.

Pete

It's like, right, so it's logged. I know it needs to happen. But now begins the maneuver. And unfortunately, the maneuver will take a while.

Mark

Yeah, okay.

Pete

So whereas a non-autistic person might be piloting a speedboat in this analogy or a jet ski and therefore be able to turn around on a sixpence, you know, just be able to straight away zoom off in the new direction. I'm in my big oil tanker or in the Titanic or in some big ship. and it's lumbering and it's heavy and it's slow. And it just takes, there has to be the time and crucially the space. For that to swing around. And that's not even doing it.

Mark

This is the interesting thing with Otto is that he doesn't acknowledge me saying that. So if he said, like, oh, yeah, I'll be there in a sec or in a minute, or I just want to do this thing. But he just blanks me completely.

Pete

Well, yeah, because the thing is, if you're still in the attention space that you're in previously. So, for example, in my analogy, continuing to read the book. That's still where you're at. If you come along as a kind of as the door knock or the doorbell, then you're the new stimulus. And then if you continue, you're still the new stimulus. In fact, you're adding new stimulus each time. Yeah, he's still on the book and the process barely begins and it's possible even I mean from my experience it almost feels like every further intrusion intrusion every further new stimulus resets me back to the beginning of it. Right, okay. Which is where the frustration can come from because it's like as an adult, of course, unlike a teenager or a child who, you know, might not be able to rationalize this quite the same as I can as a grown person. I'm really trying to swing the ship around, but if things keep interrupting and slowing me down and setting me back to zero again. Back to square one, the frustration starts to build, which is then, you know, why when there are multiple people talking or giving instructions or something can lead very, very rapidly. to something approaching meltdown. You know, that can happen so fast in that particular circumstance. And the harder it will be to turn the ship around, the harder it will be to swing my attention. onto the new thing. That's dependent on just how engrossed I was in the original stimulus. So that's why this isn't a consistent You know, sometimes it's not as apparent because quite frankly, I'm not that bothered. I'm not that focused on whatever I'm doing. But if I'm really, if I've got into what we often call a flow state. where I'm really locked in, you know, and I am feeling all the things that autistic people feel in that flow state, which is calm, regulated. fun, enjoying it, you know, really getting a lot, learning very quickly, you know, really kind of just gliding along in this wonderful kind of bubble The more I'm in that state, the harder it then is for me to leave it and do something new.

Mark

Yeah, okay.

Pete

Another analogy, just imagine you're trying to get out of bed on a really cold morning and you're really snuggle warm.

Mark

Yeah, that's a good analogy. I like that. Yeah.

Pete

Well, the only problem with it is, though, that some people could claim, well, you just got to do it, haven't you? And to which I would say, actually, no, because even though you can force yourself out of bed. Nothing will speed up this process. It will have to pan out.

Mark

Yeah. This is one of the reasons I think why screen time is so tricky to transition children away from. Is because it is exactly that. They're engrossed in it. You know, it's this entire thing. Well, it's one of the more engrossing things. And video games as well is another one where, as I think you mentioned in the previous episode, you're actively engaged in it. You're not just watching it passively. you are doing a thing and then it becomes, you know, even more difficult to pull yourself out of. So I think that makes a lot of sense. And also I'm I think for my kids certainly, screen time is a place of safety and of regulation.

Pete

Yes, absolutely. It certainly is for me. Yeah, well, I mean, the thing is, it's like, again, like with so many. Like with so many things that there's nothing kind of mysterious or odd about the whole screen time issue with autistic people It's it's just that when it comes to watching a TV show playing a video game or even reading a Kindle or doing something like that It's quite simply very, very, very, very, very low demand. It's a space where you can be in that. flow state very easily you know it's one of the more straightforward methods for an autistic person to fall into that lovely bubble of flow state you know it really is quite It's the easiest way, really. It's like a shortcut, you know. So, we're more likely to fall into it very deeply, which makes it harder to get out, but As well as that, it is, as I say, low demand. So there are very few things that will happen during a TV show or during a video game that will actively try to kick you out of it. You know whereas if you're in a flow state, I don't know doing anything else like But you know like in the bath or something, you know if you're in the bath in a flow state because you're an autistic person that likes a bath eventually the water will get too cold or your muscles will start to be a bit sore or something like that and you'll have to act then. And it's like, oh God, okay. Whereas, you know, if you're on a screen, it will just. Keegan.

Mark

Yeah, and also they've chosen what to watch as well. That's another thing is the like, you know, it's not, they're not just watching, you know, not when we were growing up, Pete, and they were K Four channels, and you just had to watch what was on.

Pete

Yeah, because that would have been that would have been a thing, wouldn't it? You know, something coming on that you don't like, you would have then been like forced to walk away, you know, even being monotropic, because all of a sudden.

Mark

it's gone and it's not interesting anymore and you just kind of gradually remove yourself yes but they're locked into this sort of you know extreme they're able to just carry on yeah and on Another interesting observation I have is when particularly with mealtimes and again with Otto is that he will eventually sort of come to the dinner table, and I've learned to not expect a response from him. I just know that it's kind of sitting there and he is doing it. So I give him a lot more time to respond than I do with the other two who tend to respond relatively quickly. But then Otto will come in and he'll sit down for the food, which will be on the table, and only then will he realise he really needs the toilet. And oh, yeah, that's that's standard. So he'll sit down and the food'll be on the table and he'll get up and walk out again. I understand that's because he's in this in this monotropic state where he's not even paying attention to his body and what his own physical needs are.

Pete

Oh, yeah, yeah, that that that can that can you know be one of the first things that we start to lose track of, you know, like we forget to eat, we forget to drink. We might already have a very tenuous link to our interoception anyway, you know, let alone going into a monotropic flow state. So yeah, that's pretty standard, I would say. You know, what you're kind of seeing in real time there is the boat turning. Yes. You know, when he gets to the table, it's like the boat in reality is only about halfway through its turn. And him going back to the toilet and having to deal with that is like a continuation of that, you know, that reality of we're still not there yet. You know, we are still transitioning. The thing is, you see. The world, and this is something I bang on about ad infinitum, but the world's systems, the systems that we grow up among. whether it's train timetables or things on television or the way that hospitals work, the way that schools work, the way that the police operate, the way that government works, every single thing that operates around us. has been set up with non-autistic people in mind. It's been calibrated to them. And therefore, it's been calibrated with the assumption and the understanding that pretty much everybody can just go from one thing to another. almost immediately.

Mark

Yeah.

Pete

You know, and this is really, really crucial because ultimately, that's the problem. You know, that you've got a significant minority whose brains work in this different way. Because as I will explain, this monotropism isn't all cons. It's not all bad. You know, there's a real trade-off thing going on here with monotropism, which actually the human race benefits from enormously.

Mark

I don't think we'd have universities if it wasn't for monotropism.

Pete

I have a sneaking. . . I honestly have a sneaking suspicion. we wouldn't have fire but okay you know let's not go too far with that because it's a bit controversial and you know we've got to avoid the whole you know autistic people are like amazing at everything and geniuses because you know we're not we're just people trying to live but that you know it's an interesting thing to think about about what monotropism might actually have given us you know, this ability to hyper-fixate on a thing for a long time. So the point I'm making is that, you know, all around us are these systems that are designed with the assumption that you can just go, you know. Bang bang bang new new new new you know schools changing over lessons and just being straight from maths to English to French to science bishops bishop like this You know, being expected to just get off a train, go on a new train, you know, with hardly any interim time, being expected to go from starter to main to dessert, big, bang, bang like this, you know, all of it, everything is constructed with this assumption. And there's a whole minority of us who simply can't do that. And what are we meant to do? Because the thing is, because that's how everyone else works, they all expect us to be able to do it too. So parents expect their kids to be able to do what they can do. What if we can't? Teachers expect students to be able to do what they can do. And what if we can't? And it so quickly spills over into. naughtiness being viewed as a you know a willful because as I said earlier our only point of reference if you're not autistic that could even possibly explain this behavior is that they can stop but simply won't. Yes, it's defiance. It's persistent. Yes, it's just defiance. It's another version of defiance. And though that can be true, I'm not for a moment suggesting that all autistic people are, you know, angels that never misbehave. You know, it's entirely possible there could be defiance involved there. But there's this whole other level of stuff, which is quite literally, we cannot. Do it. And I don't think neurotypical people are ready to hear that, if I'm honest with you. Yes. I think there is real, real pushback, because that would mean Actually, having to change stuff.

Mark

Okay, so so talking of strategies then, because you know, the you can't get away from the fact that you will Inevitably, be pulling these children away from something they enjoy or something that they're deeply invested in multiple times a day. And there are these multiple battlegrounds every day. There are a few different strategies that I've employed quite usefully over time, and I'm sure that you've got some as well. One of them is implementing a lead in time quite far in advance, where you'll say like, right, in twenty minutes, we are going to get our shoes on and go to the Superbowl. Market, right? Something I did today. And then, you know, you go back and go, just a reminder, it's 10 minutes, you know, and you sort of do that so that they at least know that they're sort of ramping down. One of the things I also do, particularly for Otto, because I know if I need him to sort of do something Else outside the house. If he's playing a video game, that's much harder to do. So I will now openly say I don't want you to play a video game. You can watch T V, that's okay. But don't play a video game because it's going to be much harder for you to then do this other thing. So I'm a lot more open about it. But it's about sort of setting the expectations and letting them know in advance. Not just like, right, we're going now. We're going to.

Pete

Oh, yeah, yeah. I mean, yeah, that's an absolute nightmare if you do that. Yeah. Yeah, I mean, this is the thing. And, and, you know, I'm almost at the point now where I'm so belligerent about this that I almost feel like saying. Let's not even call them strategies, you know in the same way that I mean that this could get me, you know in the stocks and and have tomatoes thrown at me if I'm not careful, but I'm even starting to get to the point where I'm thinking, you know, should autism even be counted as a special educational need rather than like just. Come on, people. Just for fuck's sake. This is what you're dealing with. There's nothing special about it. You know, it's there and it always will be. And you will have. a portion of students always who are autistic. So teachers, get the fucking hell used to it, you know?

Mark

There's so many strategies though that would help to accommodate for neurodivergent needs that are also going to be useful for neurotypicals. Do you know what I mean? I mean, you're not excluding the neurotypicals by going in ten minutes, we're going to be doing this.

Pete

Well, you know basically everything works despite people anyway. You know everything works because it's the most efficient we've been able to make it without like actively killing people if you're going to be really cynical. So, you know, like a school will operate by just not quite traumatizing all the kids too much, you know? And the majority of the kids that won't be traumatized, of course, would be the neurotypicals who are the ones who are, you know. More able to cope with its nonsense, whereas the autistic kids will be the ones and the ADHD kids will be the ones that are the canaries in the coal mine. you know, we're going to fall first, you know? So anything that actually helps the canaries, you know, anyone that helps those who, you know, actually find school truly hostile. will actually benefit an enormous amount of other kids too. You know, it will just be more human. It's about humanizing spaces ultimately. But to go back to the strategies, you know, the strategies about managing monotropic thought. It does feel a bit like, you know, well, what strategies do we need to employ to ensure that blonde people can continue to exist, you know, or that people with brown eyes can continue to thrive? Because to me, it feels so fundamental. That it's like no, this doesn't require strategy. It requires simple knowledge that it's a thing. Yes, but as a parent, if you want to reduce those battlegrounds, which I know, I know. Like I say, I'm getting more belligerent in my old age. But yeah, I mean, in terms of what we can do to employ, well, as I say, you need to be aware that it's a thing. You need to be aware of the fact that as an autistic child, your child's monotropic brain is very much like a car hurtling down a motorway. Right? The motorway's destination is whatever the thing is they're focused on. And their brain is pelting down there at a tremendous speed. This is the trade-off you see. This is the trade-off because that speed is basically an analogy for how much the kid is taking in, the learning that's happening. and the joy that's being developed and kind of created by the experience. The car is bombing along and that represents the incredible power of monotropism. Basically, autistic brains are incredibly good at sucking up information and taking things in really fast. The trade-off is we just can't turn cores off.

Mark

You're not going to put a handbrake on at 90 miles an hour.

Pete

Exactly. Yeah, if you're bombing down the M4. Yeah, if you're bombing down the M4 at 70 miles an hour. You can't just turn left, willy-nilly. You can't turn left when the person in the passenger seat says, oh, we've got to go now.

Mark

Yes. You know? So you wait for an all-dark exit, right? Which is what I do with that.

Pete

And the next exit is, of course. Signposted.

Mark

Yes. Yeah, yeah, yeah.

Pete

In massive advance. You know, like two Mars in advance. I mean, you know, it's coming for a very long time. And that's exactly what you're doing with your kids. When you say to them, right, two o'clock, we're going to be doing this. you're basically that big blue sign saying there is a junction approaching.

Mark

Yeah.

Pete

You know? And yeah, because they're kids, they might miss the junction signs. As an adult, I won't. You know, as an adult who's autistic, I'm getting, I'm pretty good at that now. You know, I can manage my transitions relatively well. So long as there are some warning signs. But yeah, kids will get it wrong sometimes. They might miss the warning signs or even ignore them. But generally speaking, they just need those big blue signs.

Mark

Another useful one that I found is actually just waiting until the end of the thing they're watching. The question that is asked most often in my house of my kids is how long is left on this? Right, because they'll be watching something and that then, because it reaches a natural conclusion, and it's not a conclusion that's imposed by me in the same way. That I could go, oh, the seven minutes. Okay, when that finishes, can you, you know, come upstairs? And they respond much better to that. And that involves me being a lot more flexible around because sometimes. That will go wrong because then I'll go. How long's left for me? So that oh, 40 minutes? Oh, God. Because especially YouTube, it could be seven minutes, it could be an hour. Yeah. So there is you know, you have to be more flexible with what you expect the outcome to be. But it it makes it a much easier sort of off ramp, I guess.

Pete

Yeah, but the thing is that there's another factor involved as well though, which is if it's a road you've traveled down before You don't need the warning signs as much.

Mark

Okay.

Pete

Because you already recognize roughly where it's going to be coming. And that's where routine comes in.

Mark

Yeah.

Pete

Because if you've got a steady routine, like I don't have to remind my daughter very much at all in the mornings before school to do stuff because our routine is so firmly entrenched. And that can be very difficult, certainly in multiple child families, but whatever routine you can build in to the day. the less you will need these warnings and this extra kind of layer of aiding and allowing the transition to happen because in many ways the transition is already set in as part of the schedule and You know, and that works really, really well. But at a fundamental level, I suppose, you know, if I imagine that there are non-autistic parents listening to this, you know, and who want to do right by their kids. I just have to say they have to understand it as a total difference from how they work. They have to understand that they may never fully grasp it. Because of the double empathy problem, you know, in the same way that I can't imagine what it is like for a non-autistic person to have the brain they have. Non-autistic people can't understand ours either. You know, so parents have to take this kind of almost at faith. Yeah, they have to believe that I'm not just making crap up, you know, and they have to believe that their kid is indeed affected by this. Well, no, that's the wrong phrasing. They're not affected by it. They are this. You know, this is simply how they work

Mark

One issue sometimes I think is when you when your child transitions away from something that they enjoy doing, it's not always clear to them that they can come back to it again. That sometimes it feels like it's permanent. And I've sort of certainly read this. I can't remember who it was, but I I saw someone talking about this, that they they didn't realize that their child thought that that like stopping the game was like they would never be able to play the game anymore. So they had to sort of say, So, what we're going to do is we're going to stop the game and then we're going to go to the shops. And then when you come home, you can go back to the game. And that just sort of closed that loop and it gave them the like Oh, it's not permanent.

Pete

I I I wonder I wonder whether it was a belief that they that they didn't know they could replay it or a fear they wouldn't be allowed to

Mark

Right, yeah.

Pete

It's always interesting to kind of interrogate what really could have been going on. Because of course, kids can't necessarily communicate it clearly.

Mark

And so, why is it being stopped in the first place? Yeah, you know, basically, they're being told, right, you've got to stop it.

Pete

So, if. It's a bit like this. Like, think about something that you genuinely rely on to get through the day. For most non-autistic people and coffee, exactly. It's a really good analogy for this. Coffee is a fantastic analogy. For some people, it might be beer or wine, but that's a whole other conversation. But yeah, imagine, you know, coffee, the thing that gets you through the day. Chances are most people that need coffee will have it first thing in the morning. Yeah. I think that's fair. And most people that need coffee will then be wondering where the next coffee is going to come from. Because it brings, I mean, we can talk about addiction, but that's a slightly separate thing. Ultimately, it brings comfort. It is something to look forward to. It helps give your day structure. It helps give you something to focus on. It helps you feel like there's going to be some kind of dopamine reward if you get things done. And as an adult, of course, you know where the next coffee is going to come from, don't you? You know, you know that if you want one, yeah, you can just have one. You know, do what you like. You know, you're a grown-up. A child doesn't have that autonomy. People seem genuinely surprised by this and it's always interesting to me because like teachers will be like, oh, we have to prepare autistic people for the real world. And it's like, you do realize when these autistic kids are adults, they're probably going to be a lot happier. You know, I mean, maybe not super happy, but they'll probably be happy because they'll suddenly have autonomy and independence and, you know, be able to control things themselves. You know, kids have none of that. You know, they don't know where the next. comfort is coming from. I remember as a kid, you know, I was always thirsty. I was always too hot and I was always thirsty and I never knew when I was going to be allowed to get a drink. You know, because like you, I would imagine, we didn't have water bottles in those days. You know, it was like a trip to the water fountain whenever we were allowed to. You know, you just don't know when it's going to happen. So I think that it could be that there is a real sense of. I know that the game's still there and I know that I might be able to play it again one day, but I don't know when because I'm relying on these capricious adults whose motives I do not really understand. to decide whether or not to gift me that. And if you imagine being a grown-up who had some higher power hovering over them with coffee in that same way. You'd soon recognize that my God that would be horrible. Yeah, you know, like what if in the morning tomorrow someone somehow some like godlike figure some bigger someone bigger than me You know, kind of turned up and was like, I'm sorry, Pete, you are not allowed coffee this morning. You know, I would be devastated. I read out of coffee filters the other day and it was, it was horrendous. Yeah, yeah, absolutely. Absolutely. Because you are, you're not relying on it just for the caffeine, although that is part of it. You're relying on it for the sense of familiarity, for the sense of safety, for the sense of peace and quiet, those few little moments you get in the queue or. sitting on the chair, you know, kind of just staring at nothing. That's what you're really getting. And that's what often autistic kids are getting from their screen time or their video games or their you know reading a book before school or whatever you know they are they are getting exactly the same as we are only they don't have the the freedom so they're always fearing They're always worried about whether they will actually have access to the thing that they know will make them feel better. But they can't often put that into words. You know, because I mean it took me years to be able to figure that out for myself as an adult, you know? Yeah, and it's it's really hard. So I don't know. I mean, it's possible, of course, there could be a kind of object permanence thing where they genuinely don't know whether they'll ever be able to see that game again, but I do wonder whether it's more to do with permission.

Mark

Yeah, potentially. Yeah, yeah, yeah. And also just knowing the full plan. Not just the next bit, yeah. What? What's like, okay, so this is the Otto has again has this. And this is partly bribery, I'm sure, on my part as well. But if we get if we have to go anywhere in the car, right, there is that issue with the transition of trying to pull him out of what he's doing. Okay.

Pete

Yeah.

Mark

And I now have car suites, right? I have sweets in my car, and him knowing That there is that something that he's going to enjoy in the car does help enormously. He will ask if he can have a car suite before we've even got in the car. But he needs to know there's that sort of that little enticement just to, you know, he needs to know that something nice is coming next.

Pete

Absolutely. And the thing to think about that is, what does that tell us, perhaps? About just how bad to him the car ride was before the sweets. I'm not that bad a driver, Pete. But no, do you know, like, that there could be like. Obviously the transition is going to be a big part of that. The sensory aspect of it, you know, there could be sensory aspects of driving that he finds difficult, you know. It's just, again, it's about just taking a different perspective and thinking. Rather than they like the sweets because, you know, they're a kind of treat and it's kind of above and beyond. Maybe it's like actually. The sweet is the only thing that makes it even plausibly doable. Yeah, you know? Like, like without the sweet, this is going to be actual torture. Yeah. But actually, throwing a sweet in there makes it. Actually, kind of relatively doable. I don't know. It's a very subtle difference, but again, it's just changing the view.

Mark

That's very similar to what, again, another thing that I do with the kids is gamifying stuff. Oh, a lot. I do that a huge amount. So, bedtimes are insane in my house now. And they are like my favorite part of the day, like weirdly, because there's always been. a little bit of a a battle around that of you know of trying I'm sure that all parents of of any kids, but particularly neurodivergent kids have Huge battlegrounds around bedtime. And what I started doing, I found things that they enjoy doing almost more than the thing they were doing before, right? And that is the individual bedtime routine that I do with them. So, with India, it is chasing her up the stairs. Like, she finds it absolutely hilarious. So, what I'll do is from nowhere, I'll just start and counting down from five. And she knows that when I get to one, I am going to run full on after her up the stairs. Like on all fours. And we've got like. . . I'd enjoy that. I'm sure we can schedule some time in, but so we do, and then we have this whole game where she will run into my bedroom and she will jump on the bed and she'll grab Both pillows, we both need a pillow, and then I will wrestle the pillows off her. And then there are just two pillows of slightly different thicknesses, so she has to choose which one she gets to keep. And then there's this whole this just this routine and this whole game that is fun and stupid and so much joy, but it it's more exciting really than watching Bluey. So there's that enticement. And with Otto, it's it's a different thing. He He partakes in what I call a mauling, which is very sensy. He's very sensory. So mauling is literally him lying in the bed and me just bashing him.

Pete

Yeah, yeah, my daughter likes something, yeah, we call it drubbing in our house. Drubbing, I love it. Like, you know, to like old-fashioned language, like give you a drubbing kind of thing. And it's, you know, often I'll kind of, you know, like rub her head with my knuckles gently, you know, like this. And she loves it. But yeah, absolutely. I mean, it you made it a game, you know, you've taken it from being a boring transition to something that's actually got something to say be said for it.

Mark

You know, it's it's fun and it's fun for me fun more fun for me. It's exhausting.

Pete

None of us. But it's more fun than arguing and fighting about it. But but yeah, I mean that that's that's a surefire one, you know as long as you can find the right activity for your kid, you know and actually make it enjoyable And therefore, it no longer has to be a fight. And also, of course, you know, you've made it routine. It becomes routine. So it just becomes part of how it goes. The only downside is if you haven't got the energy for it, they do tend to still demand, you know? Like, we watched parts of that Try Not to Laugh TV show, you know, with Jimmy Carr. Not all of it, because it wasn't all suitable, but some of it was really good for. you know her age group and for a long time we did that before bed okay yeah you know trying to make each other laugh oh but the thing is like that is hard because we both got very good at it And we ended up just being so absurd and random, you know, that it would take ages. And sometimes I just wouldn't have the energy. Yes. And then you're faced with the. But this is what we do, you know, and I'd feel dreadful and, you know, and then we'd have to negotiate. Look, you know, I can do one round, but I can't do any more than that. Yeah. You know, because it is difficult, you know, because routines, if you can't meet them. it can be really hard. But yeah, you know, offering that, again, like I said earlier, you know, offering all that fun stuff is the equivalent to an adult listening to music on the drive to work and grabbing a quick coffee. Yeah, yeah, yeah, yeah. You're taking an unpleasant, miserable part of the day and you're just throwing in some stardust to make it a bit more doable.

Mark

Just shoveling in some dope on the bottom.

Pete

Yeah, exactly. And just some. you know, some little micro moments of of joy to make something truly unpalatable do them.

Mark

Yeah.

Pete

You know, it's never it

Mark

It's not always easy when you're a parent of neurodivergent kids and you're just by that time of the day, you're just knackered. Absolutely. So if you can do it, it's worth persevering with, I think.

Pete

The routine alone, even if the routine isn't all bells and whistles with games and stuff, just a solid routine that you try and stick to every night. You know, teeth cleaning. If you have a bath every night because you're that organized and I'd be impressed, then, you know, have it at the same time, everything, you know, same time, especially as the kids get older, you know, and they can tell the time themselves and they can see that the time is coming. you know if i'm in my monotropic space i'm still keeping an eye on the clock some you know most of the time i'm not like so far gone that i'm not Totally unaware, you know, I've got some ability to, you know, continue to, you know, I need to know my timings. I need to know when I've got to be done by, and then I can transition fairly easily.

Mark

Yeah.

Pete

So, so yeah, just just Wherever you can, build in those routines. And if you can throw in a little bit of sweetness here and there, that will obviously help because, you know, humans. So, so yeah, absolutely.

Mark

So, another potential cause of transition difficulties, which we touched on briefly in episode one, is our kids. Feeling that they're not in control of the situation. Which is, you know, particularly pertinent to PDA kids, kids who have pathological demand avoidance or. persistent desire for autonomy, persistent drive. There's so many different acronyms for it. But I think all transitions are a demand. on a PDA kid?

Pete

To a greater or lesser extent. Yes, they are. Yes, absolutely.

Mark

And as we know, they have a highly sensitive nervous system, so these demands can be Interpreted by their body as a threat to their safety, which in turn then triggers that survival response of fight, flight, freeze, fawn, possibly another F. which is fuck off. Yes, but basically it's seen as a a threat to their safety and that it it's different from what we covered previously, which was the fear of the unknown. and the fear of the known in that it's not anxiety about what's to come that's the trigger. It's the loss of autonomy before you even get there.

Pete

It's the loss of your current state of being, which could be very, very precarious indeed. Absolutely. Yeah. I think a lot about PDA because I have definite PDA. traits or whatever you want to call them. I wouldn't go so far as to say that I am PDA, you know what because I don't think you know we still don't really know what that means There's so much disagreement about whether it's part of autism, whether it's its own discrete thing, whether it's even a part of neurodivergence. And we haven't got the energy or the time to weigh into that debate. It's circular and it's never ending, you know, and that's not particularly helpful for the purpose of this. But I can hopefully shed a little bit of light on what goes on in my head when I experience my PDA feeling, you know, my PDA kind of reactions. And what it tends to be is indeed that a feeling, a panicked feeling, panicked, frantic, desperate feeling of. I'm only just kind of coping right now. Right, okay. And now this. Do you know what I mean? Yeah. Like, like, I am literally. just treading the fine line between, you know, things being kind of okay and total catastrophe. And now somebody has come along and they want me to do something. And I ain't got that in me. Do you know what I mean? That's how it tends to be for me. And it's a very immediate, knee-jerk, instinctive, protective reaction.

Mark

Do you reconsider it sometimes? Do you say no instinctively and then process because Otto does this a lot. Sometimes I've even once said, Do you want some chocolate? And he's gone, no.

Pete

Oh, yeah, like pause and then gone, oh yeah, actually, I can have some talk about it's because, but by the time you reach, God knows what age it would be, it'll be different for everybody, but by the time you reach whatever age it is that for you. You you have a deep well of experience of feeling, as I said, on the cusp.

Mark

Yeah.

Pete

And then having somebody make a demand of you, even the smallest demand. the most just purely hinted demand that has tipped you over the edge or has ruined the rest of your day or has taken you from being slightly comfortable to being deeply uncomfortable yeah you know and and you just crashed each time so So eventually it becomes knee-jerk. It becomes a reaction. It just becomes a straightforward no at first glance. And then, yeah, you know, then your rational brain kicks in. And then you might actually make the more reasoned decision of, oh, actually, this isn't going to harm me. This one is actually okay.

Mark

Yeah.

Pete

Or even could be beneficial. But your immediate no is the equivalent of. a person in a dark room hearing a loud noise and turning the light on.

Mark

Yeah, okay.

Pete

So you it is that kind of instinctive protective instinct that you're doing.

Mark

And that no is keeping the state that you were previously in as it was. It's like I'm not

Pete

Which isn't in my analogy the darkness the state we're originally in is the feeling of being safe. Yes, that has now been disturbed And your no is the light going on to try and reassure yourself that you off still fine. Yeah. If that makes sense. Basically. All of for me, much of this, and I can get hauled over the coals about this because some people think that PDA is nothing to do with trauma at all, which, you know, I mean, I'm no. psychologists so I might be wrong but certainly I think that a lot of what you might call a PDA style response is going to be trauma-based and that it will be it will be somebody who who is deeply, desperately trying to, yes, as I say, maintain this hard, often hard won sense of safety and moment of calm. And then when the thing comes along to threaten it, just an immediate no. Yeah. You know, and all I think about when I talk about this is students that I've taught over the years and they all had the same kind of. presentation to me. Do you know what they all look like? And I feel like I look like it too when I'm in this state. They all looked like a person who was desperately trying to not be noticed. by a bully or a serial killer or a man with a gun or something like that. You know that look you know like in those films when you know they're doing something horrible like executing somebody every hour and you see all of the hostages kind of just desperately trying to blend in you'd be the grey man yeah the grey man like do not do anything and they all had that look that look of Don't look at me. Don't come near me. Don't say anything. Please. You know, yeah, yeah, yeah. And that is so deeply etched onto my mind's eye that I can still see certain children of, you know, that I taught over the years that had that, that, that. Vibe going on, you know, and that's deeply informed my perspective, I think, on PDAV because they were diagnosed PDA these kids. Okay. you know you know as far as that is a diagnosis because you know it's all very gray area but you know so it's a diagnosis that i respect um they were diagnosed but i saw a haunted look You know, haunt him.

Mark

Yeah, and I think as he's as you say, I think the more close to the edge of burnout or meltdown or whatever, the more important it becomes to retain that control. Because it's something that I've found, particularly with Jay, and I think I'm going to have a whole separate episode about PDA where I'll go into this a lot more. because I think it needs more investigation. And there's some good people to do that with. Yeah, I will get some notes on who you think I should speak to, actually, at the end. So but the more that Jay was in burnout, the more prevalent Prevalent that was. Now he has, I think, such would emerge from burnout now. He's much more amenable to doing stuff and he's a much more open to in Inverted Commas demands or suggestions for other things. So it isn't a permanent state. I think, as you say, it's very much dependent on how regulated They are and how much they've got to give, how their capacity, as you I think, you described in the last episode.

Pete

Absolutely, yeah. You know, if you are running on fumes. And, you know, like I remember these kids, you know, they'd come into my classroom head down, like they had just like, I don't know, like got through the opening. scenes of an Indiana Jones movie or something, you know with real stakes or they'd just got through the opening scenes of saving private Ryan and somehow survived. You know, they'd come in with that kind of look And of course, you know, in many ways they have. They've survived period one and two. They've got through break time. And now they've come into my classroom and they are absolutely done. You know, they are done. And if I go up to them and say, hey, write the date in your book. What that I suppose what I need to try and do is to explain exactly what happens in that moment, maybe if that would help.

Mark

Well, yeah, yeah, yeah. I mean, I this kind of brings it brings us into sort of how we can when help uh with transition when that loss of control is so pivotal to how they feel and and the dysregulation that that causes.

Pete

Yeah, I mean, fundamentally Again, you know, we can go a bit too far here. Well, not too far, but a bit idealistic and say that, you know, if what I'm saying is the case in at least some examples of PDA-style responses, then obviously we need to reduce how haunted they are. You know, we need to reduce how stressed they are, how massively overwhelmed by everything around them they are. And that's a whole list of various.

Mark

Yes, so you're basically actually having to question whether this transition is worth it.

Pete

Essentially, if they're in that state.

Mark

Yes, yeah, yeah, yeah.

Pete

If that is the state they come to you in, then you have to ask yourself. Is me asking them to write the date worth them almost certainly tipping over into meltdown?

Mark

Yeah, yeah, yeah.

Pete

So that's usually what the PDA response ends up being. It ends up being a meltdown. You know, because you're asking them to do something and they break down and they break and they start shouting or they storm out the room and that's that's meltdown.

Mark

That's meltdown.

Pete

So so so yeah, you know as a teacher as a parent you got to make that call if they're in this sort of state. Therefore, how do we not have them in this state? What can we do to try to reduce how often they are in this state? where any demand triggers the fight or flight, triggers a kind of sense of, oh my god, I'm fucked. This oh shit. Oh no. I am going to snap and I don't want to You know, how do we get them down off of how and that's a whole other thing and you have spent the last goodness knows how long speaking to people about all the very many ways that we can do that, you know, every strategy and accommodation and adjustment that we've ever talked about is part of that process of trying to bring them down trying to reduce stress from environmental concerns to how they are judged and how they are treated on a daily basis to being really just aware of their own physical state and are they comfortable? Are they feeling safe? Are they feeling secure? Are they feeling, I mean, maybe happy is too far to go, but are they at least feeling neutral? Because ultimately, if we're not doing that, then everything will boil down to how can I find a workaround?

Mark

Yes, exactly.

Pete

Around the button on the mind.

Mark

But actually, so let's say it's cleaning teeth. You know, like fantastic. But then you question, does it have to be done?

Pete

Well, I mean, I deliver this Kahoo course, you know, the course I deliver from awesome training over in Ireland. And the whole point of that course is to try and help parents break out of expectations. Yes. You know, and parenting in a very unique way, you know, and parenting for their child rather than for the, you know. expectations of other people grandparents friends you know etc etc and yeah it's a big question you know I mean I would never you know as somebody who's had nightmares with their teeth I would never advocate for anyone never cleaning their teeth.

Mark

No, but at times you can look the other way, right?

Pete

Making the judgment.

Mark

And so, you know, it's an ideal, but.

Pete

it's not an expectation sometimes i let my daughter go to bed without brushing her teeth because she's had a hell of a day and she's just she needs fewer demands. So that's an easy one that I feel every now and again we can overlook. You know? But if you, you know, for whatever reason, you know, you got to get them to the doctors or something. It's an emergency or you just really got to work around this. Then there are cheat codes.

Mark

Okay, so what are your cheat codes for this then?

Pete

You've got to make it not a demand.

Mark

Yes, so declarative language, I was going to talk about sort of that is a strategy that is. has been a bit of a game changer in our household.

Pete

You you just change the stakes, you change the autonomy, you give them the illusion of choice. Yeah, yeah. Yeah.

Mark

So do you want to walk to the doctor's or do we want to go in the car?

Pete

Exactly.

Mark

All the buses want to go on the bus.

Pete

Because then the actual going to the doctors becomes moot. Somehow, weirdly, they just kind of accept. That then, yes, and then it all the focus is on the means of transport, which you don't really care or give a shit about.

Mark

Yeah, exactly. So, you know, you unless they say, like Plain and then you're yeah, of course, yes, yes.

Pete

Well played But yeah, you know that that that but what I would say is that that is great for when it's necessary. Yes, brilliant, you know, that is an option But if you find yourself having to do it so much, that in itself is a red flag. Not a red flag that you necessarily are doing something wrong, but just a red flag that clearly your kid is. really struggling. Yes. You know, and and could do with some form of intervention somewhere, whether it's talking to the school about adjustments, whether it's talking to teachers about their expectations, whether it's amending how you go about things in your daily life or building a more routine or taking some stuff away. You know, do they really need to go to two clubs a week? Could they just go to one? You know? Are we asking too much here? You know, it's that kind of thought process that we need to get into rather than. Oh, you know, annoying child, you must do these things. You know, they have to happen to, okay, child of mine. You know, clearly things are tough. How can we navigate this? How can we compromise?

Mark

Yeah, well, it's down to children who children want to do well if they can. And if they can't, don't see that as defiance or, you know, you know, it's, it's. because they're not able they don't have the capacity at this time. Yeah. Um I just wa just wanted to kind of go back to declarative language a little bit because I think it is definitely a a strategy that is useful for dealing with this loss of c Control. And so declarative language is really: you're not asking them a question. You're not sort of putting demand on them. You're just putting information out there. And then letting them have that information to do what they want. And so the best example I've got of this, which works really well in our house now, I use it, is when meal times, when dinner is ready. And again, they've each got a slightly different strategy because they've got very different profiles, but they're all sort of pretty um l low demand, I guess. Yeah. Um because it used to be we go, right, dinner's ready. And then you're pulling them out of that transition. They're probably coming away from something they don't want to do. There's that trigger. PDA kicks in. They're like, no, they've lost the control. So with Otto, I will sort of just state. Dinner is ready. It's not me saying, come and get your dinner. It's me stating that and giving him that time to then process it in his own way. All right. India. I don't know how it evolved to this, but I call upstairs in a really ridiculous voice, like a sing songy, like an opera singer's voice. Yeah, yeah, yeah. And then she answers me in the same ridiculous voice as this little game. And then she comes down. So again, I'm just calling her name. Yeah. She really thrives on that. And with Jay, I don't Go into his room. I don't shout up the stairs. I text him. And I literally just text him the word dinner, right? Or If he's actually downstairs in the next room, I'll just say dinner is on the table. So that is what I mean by declarative language: I'm not saying come and get your dinner because that is a demand. I'm just saying, hey. Just a thing. I've just noticed dinner's on the table. To know how it got there, you might be interested. You know, I mean, I do know how it got there. I've just spent two hours cooking it. But but it's just like putting that information there and letting him sort of respond to that.

Pete

Yeah, absolutely. And putting it in text is so good because even sometimes just asking or saying something and expecting a response is a demand, isn't it? You know, that can be too fast. So yeah, texting it, it removes that, which is perfect.

Mark

Which feels, you know, for an outsider neurotypical, that looks insane.

Pete

Fuck them. I don't care about that. You know, it's like if you know the number of things that neurotypical people do that are like really f<unk> Fucking weird is massive. So, you know, if they're gonna pick that fight, then bring it on. Oh, I don't give a hoop, but it's just amusing to me.

Mark

Another interesting facets of difficulty with transition that I've found is the difficulty that some of my children have with throwing things away or removing familiar things. Things that and I don't not even things necessarily that they've they've I feel that they've bonded with or anything that like that. Like we can my my favorite example of this once is that our fridge broke And we needed to get a new fridge. And Jay and Otto did not give a hoot about this, but India was appalled by the prospect that we'd have to get rid of our old fridge. and was incredibly anxious about it and was sort of to the point that I had to be re I had to make it As quick as possible for the people to come and to live in the new fridge and take the old one away. So I like unplugged the old fridge, I took it out of the space, I cleared a pathway so they could come in and out. as quickly as possible. And while I was doing this, India made a protest sign. that literally said no fridge people and there was a there was a bit there was like a sign of someone holding a fridge and then a cross through it. And she literally stood in the window and held this sign up so that when the fridge people saw it they'd return like they'd be turned away And it was, yeah, it was quite, it was sweet and it was funny and it was ridiculous. But it there's a thing there. She genuinely didn't want us to get rid of the old fridge that was broken.

Pete

Yeah.

Mark

What was going on there, Pete?

Pete

I mean, it's it's hard to know. Yeah, sure. But but I mean, there are so many things it could be. I mean It all comes back to the same stuff I've been talking about the whole time. You know, stress, overwhelm, familiarity being the opposite of fear. And those things that are around us every day. For any number of reasons we could just connect in some way to a positive feeling. You know, whether it's something as simple as. The last time she was really scared of something, she got herself a snack or something from that fridge and just something about that felt very familiar to her and very soothing. Or, like with me, for example, you know, if you've ever been in a situation where, you know, you've been, I don't know, been being told off or there's an argument happening or something bad is happening in the home. and your eyes just light on something that you just end up staring at the whole time as you kind of zone in and out from the stress of it all. If it just so happens that that thing you zoned in on brought you some weird comfort of disconnect and that's nice to look at, you know, and then that thing is taken away

Mark

It's interesting. She has it with a lot of things, though. So, what you were saying there about familiarity being the opposite of fear. It's a really interesting way of looking at it. It's that, you know, that the known is always preferable to the unknown. Absolutely. And this is. This happens with a toaster that that broke, and that India wanted to keep it. So we had it in that broken toaster in the house for weeks. And the trampoline was broken, so we had to replace it. But we could only replace it with exactly the same one, with exactly the same brand. And the worst one is the Crocs. I had this massive ongoing issue with India's Crocs. because they were literally falling off her feet. Her toes were poking out. I looked terrible as a parent, but every time I would buy some new crocs, it was like a hard no. like different ones. It w we went through probably five or six different alternatives until one day they just fell apart. Literally fell apart on on

Pete

Just off her feet and then I was like well then we have to wear these and she's like oh yeah fine then no yes 'cause they're actually they're actually ceased to exist yeah, I mean who who knows for sure but I I think that You know, there's a reason that autistic people like routine and like the familiar. And it's not like some magical thing about being autistic. It's just simple stress. It's just we're. very stressed people. You know, the amount of stress that we get from our surroundings and from everything around us and from other people in particular is massive. So we latch on to anything that can mitigate that stress. And one of the biggest things that mitigates stress and fear and anxiety is, as I say, familiarity.

Mark

Yeah, okay.

Pete

Things that we know what they look like. We know how they work. We might have memories attached to them that are positive. We might just have memories attached to them that are neutral, which in a world of negative memories is essentially positive. I'll take it. Yeah, you will. You'll take that all day long. You know, I've had it before. When I go home to where my parents are, I'll go for walks like I always do. But town is different to what it was like when I was 16. You know, that's like nearly 25 years ago. Yeah, yeah, yeah. And all the trees have grown bigger and houses have been knocked down and all this sort of stuff. And these are things that I couldn't care less about. on a intellectual level. Like I don't care about the trees, but I do care that the view facing me when I walk down the street is different to what I remember.

Mark

Right. Yeah.

Pete

I care about it simply that it doesn't bring me the same sense of comfort that it used to. It doesn't bring with it the same memories, the same, you know. I don't know what, just feelings. It's all gone, you know, and I can't get it back without going around and chopping some trees down and painting some houses. It's to do with desperately wanting things to stay the same because when things change, that's when your stress is going to go higher.

Mark

Yes.

Pete

So if the fridge is going to change, who knows where that's going to be? And the thing with this is, I think, I wrote about this in one of my books, and I can't remember which one. I think autistic people have a tendency for this reason to be weirdly superstitious.

Mark

Okay.

Pete

Like in our attempts to try to replicate past positivity. You know, pastimes which actually went well, you know, where we weren't massively stressed and we actually felt kind of good for once. Yeah. We will venture into the superstitious. Like, I'll wear the same pants. I will walk in the same direction. I will look at the same window as I walk past. I will. glance at the same tree because last time I did that everything worked out and I remember looking back to my the first book I ever read that was anything to do with autism was curious incident. And if you remember in that book, Christopher, the you know the unclear diagnosis of Christopher, his whole thing was This superstition of you know cars of a certain colour in a certain order. Yes, is and it was presented by Mark Haddon from what I remember as a as just an odd quirk, like an inexplicable quirk of autism. And it's like, no, it's just that that one time he saw three red cars in a row was a good day. And therefore, for him from now on, that's what he's looking for because he desperately, because you see, superstition is the refuge of the desperate. Superstitions only exist because people have, certainly in the past, had little means of working out what on earth it is that's controlling all this shit. You know, so we land on superstitions as a kind of desperate way of trying to put some order in the chaos, you know, to try and desperately make sense of things. And that's, I think, what autistic people are doing. We are trying to instill some kind of order in all of this. And if the old fridge is part of that, then the new fridge, who knows what that's going to do. That's thrown a spanner in the works. You know, we don't know what the next day is now going to look like. I've never lived that day with this new fridge before. You know, that's an unknown quantity. And that's right.

Mark

Yeah, and it, you know, I think part of the strategy. Around that, though it's not always guaranteed to work, is explaining what is happening and why it's happening. Exactly. So with the fridge, it's like that fridge doesn't keep our milk cold. Therefore, you can't have cereal after four days because the milk's gone off. So it's involving them.

Pete

in that conversation yeah i guess not saying switching it over and them yeah and and and you know looking at the other way too and saying you know this new fridge though it may look slightly different will fulfill the same role in that household It will do what the old fridge did. Whatever you relied upon the old fridge for, this will do as well. And don't forget that though the fridge has changed, everything else around it is staying the same. Yeah, you know, everything else is the same. So try to like, you know, try to focus on the stuff that's the same and and then maybe the different fridge will be easier to you know It's kind of like accepting an acknowledgement this could be going on for them and then being like okay Well, you know, just reassurance. That's really You know, that things are going to be all right.

Mark

That can lead onto conversations then as well, certainly with India, of her helping to choose the replacement. Which helps because it's a bit more you know, there there's that level of choice again because India's there's PDA there as well, so there's a level of control Over that of going, right, well, these are the options, which one do you think? These, these are all all fit. And so it's a bit more, you know, that we certainly had that with the waffle maker that broke. That was a a protracted negotiation, but we got there in the end. That was quite useful. The other thing I end up doing is basically keeping stuff for ages in the house until she's clearly got over it. It's not an issue anymore because the new thing is in, it's doing its purpose, it's fulfilling a function, and then I can sling the Altiza and no one knows any different.

Pete

And is that, you know, and that's, it sounds interestingly familiar, doesn't it, to what we were saying about monotropism, you know, warnings and change over period, you know, and just. giving that space for that that change to occur rather than it all being very very sudden and very very immediate you know but yeah yeah Yeah, I think that's the way to go, really.

Mark

There's one thing that I thought was quite interesting to look at. With everything that we've discussed on these last two. episodes of Neuroshambles around difficulties with transitions. That if you take a look at each of the ones that we've looked at So that is fear of the unknown, fear of the known, processing issues, sensory issues, pulling them away from things they enjoy, a feeling of a loss of control, and removing familiarity. There is one place that presents every single one of those potential difficulties, and it is throughout the whole of their childhood. And that is school. Of course. And I only really thought about this as I was writing this, and I was like, really thinking about how many transitions take place. and how many different types of transitions take place in that one environment, which I think seems almost uniquely designed to dysregulate

Pete

neurodivergent yes absolutely yes it's it's i've said it before and i will continue to say it until somebody tells me to stop um it is the most hostile space you could possibly imagine for an autistic person. If you were actively trying to design a setting that would dysregulate autistic kids and you really went all out, you know, to just, you know, create a kind of negative fun house for autistic kids. I genuinely think what you would end up with would resemble a school. Really quite close.

Mark

We're talking about typical mainstream schools here. Yes, and without any accommodation.

Pete

But even but even then, even with accommodations, you know, because accommodations are often so surface level, you know, they, you know, like, for example, you might get a quiet room that you can hide in, but. your classroom teachers won't understand why you need it. No, just as an example, you know, that tends to be what happens. You get these little bones thrown to you, but the deeper systemic issue isn't addressed. So yeah, I mean if we go through I can't remember the the list but if you if you bang out you know that list again of individual Types of transition. I'll just give you an example of a school. Yeah, okay, this is fun. Yeah, let's do this.

Mark

So, fear of the unknown.

Pete

So, yeah, school trip. There we are. School trip. Fear of the known.

Mark

Oh, God, yeah. School trip. Yeah.

Pete

Fear of the known. Fear of the known, PE, for me, anyway. It'll be Yeah, it'll be whatever is the worst aspect. For me, it was PE and science experiments for other kids that would be different things. but it'd be those things that you know are going to happen and you can't get out of them and it's going to have to occur so yeah you know processing issues uh instructions Teacher instructions. Yeah. Jumping too quickly from instruction to instruction. You know, kind of over not having written instructions on the board as well is quite a big issue.

Mark

I know that d 'cause Tam is a teacher and that's something that Tam Does is write them on the board instead of just going, right? I want you to read that chapter, do this, you know, all of that nonsense. You're lost, you know. You know, it's like you lost me. I want Pulling them away from something they enjoy.

Pete

I mean, just lesson transitions, you know, going from a lesson that you love, like art or English for me, to having to suddenly switch your brain into a different mode. you know without any downtime or without any space allowed to make that shift you know you've got to go from You know, you might be doing something really good in one lesson and just actually really getting into it and really enjoying it. And then all of a sudden, bang. Nope. Got to move on. You know, like in a game of, you know, musical chairs. And it's like, no, but I was doing that and I was enjoying that. And that was nice and fun. And I felt regulated.

Mark

And now suddenly. French. The bell went off. Yeah. It's like that jarred me back into it. Yeah, yeah. Otte also, um, loves playing football. Yeah, yeah, yeah. That transition between between break and then coming back into the classroom is quite Yeah, dysregulating for him. Yeah, removing familiar things.

Pete

Yeah, so you know, you you I mean, it happens on a micro basis every lesson because you go from classroom to classroom. So, but even then, you know, you might start to get familiar things in each room, but then There'll be a supply teacher in and it's like where's normal teacher? What's going on? Yes, and then it'll be the end of the year Yeah, and the decorators will come in and they'll repaint the whole school And you'll come in on 1st of September and be like, what the hell has happened here? Everything's changed. Yes. A new classroom as well. They change a class every year.

Mark

It's like, dude, I quite like that one. I knew where I was eventually. There's also loss of control. That's what school is. I mean, absolutely underpins everything that's going to be.

Pete

Yeah, like the whole, the whole thing, you know, that whole phrase, you know, do as you're told. or something akin to, you know, just get on with it. You know, all these phrases are predicated around the idea that you have no autonomy.

Mark

And if you don't do exactly what you're told or what what is expected, then there's tension, there's you know repercussions and punishment. Yep. So no wonder no wonder our kids are dis like seriously, I'd not really thought I d I hadn't really thought about it in the context of transition and in the context of the fact that all of our kids have issues with transition. and that school is a fucking melting pot of transitions. And that's not just on a daily level But on a yearly level as well, because every year they'll have a new year group, a new teacher. They'll mix the classes up. They do it on purpose. They do it on like horrifying group work. I know. Random groups. Yeah, and I g is as you say, it's purely geared towards neurotypicals. That sort of thing of like, yeah, they're going to get used to working with other people and they'll pick it, which is fine if you're neurotypical, but if you're neurodivergent. That unfamiliarity is not putting you in the best place to learn. It's you're you're having to understand how to communicate with a whole different set of people. when they mixed classes up, that's that multiplied by a thousand because all of a sudden the people that were comfortable to them uh like another side of the building, which is I I absolutely dread it when they when they mix cases up. And and 'cause I don't feel like enough I mean, they they make a nod towards easing that transition for neurodivergent kids, but I don't think, you know, it it's gonna take a long time to do it as gently as it needs to be to to ease some of that dysregulation. Yeah, absolutely. You know, and so this year going back to school for Otto was Like he was really, really dysregulated because this year, in particular, was this sort of nexus of transitional change, which was that there was a new year group A new teacher, a new classroom, a new start time, a new school entrance, a new pickup point, a new timetable. He had a new TA. So all of these things, he was up in the middle of the night just in tears, and we hadn't been told. You know, enough information beforehand, not necessarily on the teachers, really, because they don't know the timetable. They were still bedding in the timetable.

Pete

Oh, yeah. Well, the thing is, there'll be stuff that they definitely can't do. But there will be stuff that they could do. You know, like, you know, we can't expect everyone to do everything all the time because it's not feasible. But, you know, they could have done something. I mean, you know, like. I don't know, walk around the school pointing out where things are going to be different or something like that. You know, there's, there's, use your imagination.

Mark

I will caveat this by saying that his school have been brilliant and they are really supportive of him. But stuff just slips through the gaps, especially if you like the end of term, you know, you know from you know, being to yourself, that's just absolute mayhem. And then by the time term finishes, you're not going to be spending time in your Summer holidays then going, Oh, I really must remember to tell Otter about the new pickup time. Yeah. You know, it's just but You know, you just get an email sent to all the parents like a day before school starts going, oh, by the way, here are the new details. Yeah.

Pete

Yeah.

Mark

You know, not ideal.

Pete

No, that does sound nightmare.

Mark

You know, and. I think it's also worth highlighting that in primary school, which is where Otto is at the moment, that is one thing. That is, you know, one environment. But in secondary school, this is magnified multiple times over because you will have different classrooms and different teachers for different lessons. And I think the sensory overwhelm of transitions is huge in secondary school as you've got hundreds of kids. Like boisterous teenagers marauding through the corridors, not you know, no blame on them, though, yeah.

Pete

That's just kids, isn't it? But you know, it's too much, and it's no surprise that the vast majority of problems tend to arise for autistic kids. in that transition in year seven. What you tend to see is that statistically kids after about the October half term in year seven start then to struggle. You know, there's like a little bit of a tail off where they're still carrying some of the goodness from primary school with them in that first term. But then that wears off, you know, that that drifts away like smoke, you know, and then this is all they've got now, you know, this new reality. And around October, you start to see some kids really struggling. And then statistically, it continues throughout year seven into year eight, you know, and then some kids might adapt. Some kids might end up having to move school, some kids never go back to school again. Some kids go in and out of school kind of endlessly, never really settling down.

Mark

Each of which is a transition.

Pete

Exactly. Conditional transition. Absolutely. And a very difficult one at that. Because there is not enough understanding at this point among secondary school staff about what all this means. You know, it's just not out there. There's no training. There's no formative training at teacher training college, you know, PGCE or skip training or anything like that. You don't just don't get that kind of thing. The training that you get as a teacher when you're in the job might be very, very poor, if it even exists. You know, I mean, no blame on the teacher.

Mark

And then there's a lack of budget as well. There's a lack of budget to fund the training and to fund the accommodations they need. Absolutely. Yeah. Cheery stuff. Sorry to end on a downer though. That's why we do it, you know? It's not all rubbish. Okay, so we're going to look at the positives now. It's obviously, you know, transitions affect. I would say all of our neurodivergent kids to some degree. So it's not very easy to find many positives. I think it's worth pointing out Something that we alluded to a little bit earlier, which is that not all transitions are difficult. It can be easier with things that they're familiar with if they're looking forward to doing something. Once went on holiday and Jay woke me up at 4:30 in the morning, fully dressed and wearing a sun hat and a Hawaiian shirt, keen to go. That was not a transition that he was. Like objecting to, so he was really keen to do that. So, yeah, you know, he was on board with that. I never have issues with transition going swimming. because they love it. And the other day, I was like, let's go to Pizza Express in ten minutes, and they were all on board with it. So if it's something they look forward to, I think that's Less of an issue.

Pete

Yeah, yeah, that really can be. It's just a case of trying to manage those that aren't quite so popular, you know. But yeah, enjoy the ones that you can just, you know, do. That's definitely where to go.

Mark

Yes. And I think, again, just sort of going back to something that we mentioned in the loss of control bit, is that generally the less dysregulated they are as a whole The less overwhelmed they are as a whole, the easier it is to negotiate transitions. And as you say, if you're having lots and lots and lots of difficulties with lots and lots of transitions. then it's a very clear sign that they're already very overwhelmed and that that is this is the final straw. Each time, I guess.

Pete

Yeah, yeah.

Mark

Do you think there's a case for it getting easier as as they get older?

Pete

Oh, yeah, it does. Yeah, yeah, absolutely. You know, adults are more able to manage this stuff. You know, we're We've got experience on our side. We've been there before. You know, we know what works for us. You know, by the time we're teenagers 16, 17, 18 years old. You know, it can be a very different kettle of fish. It's just kids are kids. You know, they don't really know what the hell's going on.

Mark

You know, so it's more difficult for them. And they get more autonomy as they get older as well, which Definitely help. I've I've noticed that it's been easier with my kids the older they've got, you know, in the early, the earlier years, you know, four, five, six, seven. Oh, yeah. That's the crucible of meltdowns. And, you know, yeah, just pushing back on transition. So, you know, if you are a NeuroShambles listener and you have a. Kids in that age range, and you're thinking it's never gonna get better. I think it it can do. It can do. Lots of different strategies and lots of understanding, but also crucially, just more years under the belt.

SECTION INTRO

Neuros Diversity Champions.

Mark

Okay, we're going to look at neurodiversity champions now. These are any organizations or people that are doing magnificent things in the world of neurodiversity. Do you have any neurodiversity champions for us, Pete?

Pete

Yeah, it's always worth looking at what Anna Freud are doing. They're an organisation based in London. The person worth looking at is Dr. Georgia Pavlopoulou. She's always. got something going on. She's ADHD, so she's got like a billion things at once. Okay. And I've worked with her a lot in lots of different capacities, but yeah, it's just incredible, you know, amount of research, really neuro-affirming stuff, you know, really. Forward thinking.

Mark

Okay, and where would people find that kind of thing?

Pete

LinkedIn is probably the easiest place. If you follow her on LinkedIn, then that's where you'll get the best stuff. But she publishes, you know, so Google will will also. you know, show up to, you know, with uh research studies and things that have been published. But uh but yeah, just really, really, really good quality stuff. So yeah.

Mark

Great. Okay. I'll put a link to her in the show notes. I got a new adversity champion, which was someone contacted me on Instagram actually and said, Hey, have a look at this thing we're doing. And I really liked it. And it's called Euronook Storytime. And it is a podcast. You've seen it. It's a podcast for kind of younger kids, but they are short funny but crucially neuroaffirming stories for kids to help them embrace their differences and almost sort of give voice to their differences. And I really liked it. I listened to one which was called My Clothes Are Out to Get Me which is, you know, I'm sure familiar to a lot of our NeuroDivergent Kids. But it's about a kid who hates the feel of her school uniform, so she goes to school in pajamas and basically argues. uh why that's perfectly valid. And I just thought it was a really lovely kind of gentle way of normalizing neurodivergent experiences and helping kids to understand and articulate how they feel. Oh, yeah, I just really liked it. And they've got, you know, a few different episodes and they're releasing them regularly. So I will put a link to Neuronook Storytime in the show notes and you might want to check them out if you if you want to hear them.

SECTION INTRO

Tiny epic wins!

Mark

Okay, tiny epic wins. Now these are moments that in a neurotypical household would be absolutely nothing worth writing home about. But for a neurodivergent family, you know, they they are epic wins. Um have you got any tiny epic wins for us, Pete?

Pete

Yeah, I always see it as a bit of a win when we watch something new on television like a like today we watched bed knobs and broomsticks Because I really yeah, I wanted something a bit retro, you know something for my own child retro Yeah, and we uh and it was great we really enjoyed it, but it was Normally we just watch the same stuff on a kind of churn, you know, because it's familiar and comfortable. But we just went that extra mile and it was just really, really nice. It's a very little thing, but. We both had enough spoons to deal with something a bit new. And that was nice.

Mark

Yes. Yeah, yeah, yeah. No, I love it when that kind of thing happens. Or specifically, if you watch something, like an episode or something. That has a long series. Yes. That's always like, yes, great, we're on board. This happens with anime sometimes with Jay, because he likes watching anime and he'll watch One episode of Sun. So the amount of like things that he's watched is incredible. The amount of things that he's stuck with Very small. Yeah. So he's watched like a third of an episode or something and gone, no, that's it. Whereas I'm like, you've got to give it at least. A full episode, right? No, not him. So when we latch onto one that's got several seasons, I love it. I love it. I've got a tiny epic win, which was genuinely surprising. And again, it sort of feeds back to some of the declarative language. We got. Invited to a barbecue with a friend. So, India's best friend was having a barbecue, and Otto knows the brother as well. So, there's a family we spend a lot of time with, but Jay doesn't normally come. So, we were going to have to make alternative arrangements. However, I do always ask him just because I don't want him to feel like, you know, we're just sort of shuffling off. So, I used a clarity language and I said. We've been invited to a barbecue on Sunday afternoon and I'm going to go with India and Otto. And I just left it there. And he went, oh, I think I might come. And I had to basically not show my surprise because I thought that might then you know, tip him over into actually, no. So I just thought, oh, yeah, that would be really nice. Okay. And he went. And again, uh, we negotiated, it's like, look, you're not far, you know, from home. So if you need to come home We can do that. That's not a problem. And I can leave the other two there because they know, you know, the other family, and that'll be fine. So he knew there was going to be an out. Yes. And we I reckon it was gonna, you know, he might last about half an hour. And I thought that would be a big thing for him because there'll be a lot of people that he didn't know, and it's a different space. And he was there for more than two hours. Wow. Like genuinely staggering that he just like connected with this other kid there. and they got talking about Silk Song. I don't know if you if you're familiar with that. Yeah, yeah, the new game. With the HoloLife franchise. The new the new video game. They got talking about that and just sat and talked in a corner about that for ages. And he ate Like the barbecue food, and he was not the one that has to go first. So, for us, that was a huge win. The fact that he was open to doing that and he went there and he did it and he had a positive time. was inc incredible for me and it really, yeah, it made made me very happy that we could do that all together. Absolutely.

SECTION INTRO

What the Flip?

Mark

Okay, what are the flip moments now? These are the moments where our neurodivergent kids will say or do something truly perplexing. And I always have a few of these. Have you got any what the flip moments for us, Pete?

Pete

Not so much this week because I haven't been around. You know, I've been over in Ireland, but I do know that she's been She's been extremely insistent about various behaviours from me when I go abroad. you know, things that I have to do and things that I have to manage and see and all this kind of thing. And, you know, she's got such a random, absurd sense of humor at the moment that she just seems to, you know, she's like, you know, you must eat bacon. I'm like, why? She's like, I don't know, you just gotta do it. Which I'm encouraging, because I want her to have, you know, a. a good sense of humor, you know, some yeah yeah yeah yeah.

Mark

So do you do it?

Pete

Do you have to show evidence of you eating bacon? No she's she's she's happy to take it on verbal words, which I'm very very lucky about because I can just lie.

Mark

you know which is great but but yeah i like it yeah very very strange nice um i've got a couple of what the flip moments I've got one from Jay. We went to the dentist recently and he walked in, he went, This place smells like tetanus, aftershave, and year-old wine.

Pete

Oh, that that's good. That's really nice.

Mark

He's like it's he's just the yeah, he's got a very interesting way with words. And yeah, yeah, that's that's that's good. He's Very, very specific Just set off like that. That's brilliant. Yeah. He did not hear he did not say it within earshot of the receptionist, fortunately, because that was shot the I did he did put it on their trust pilot review though, so um he didn't just to be clear. And the other what the flip moment I had was from India recently when she came in, I was cooking, and she went, What does gossip mean, Daddy?

Pete

Good question.

Mark

Yeah. I went, oh, okay. Gossip is where people and then she interrupted me straight away. I went, Boring. I heard the word people. I'm off And then she just walked out of the room. It's like, if people are involved, she's not down. She's not down. Oh, it's a people thing, is it? Yeah, keep your gossip.

Pete

I couldn't argue with her.

Mark

I mean, that's that's my no if it's animals if it was animals, she is all in, but people, nah, not for her. Which I thought it was lovely. Okay, so that's it for this episode of Neuroshambles the second part of our deep dive into managing transitions. So firstly, Pete, thank you so much for coming back for a double whammy, a bumper edition of Neuroshambles. I really appreciate it. Thank you also to Neuroshambles listeners. For continuing to download and comment and say lovely things on the socials, and email me if you've got anything you want to email in, any suggestions for any topics of the week or any neurodiversity champions, tiny epic wins or what the flip moments. I'm always happy to hear from you. And I'm going to try and feature more of your comments on the podcast. If I can. So feel free to email me at hello at neuroshambles. com or you can check us on the socials on TikTok, Facebook. Threads and of course Instagram. But all that remains for me to say is have a nice life.