Where is the user manual for our neurodivergent kids? | George Lewis

TRANSCRIPT

Mark

Hello and welcome to episode 54 of Neuroshambles. As always, it's an absolute treat to be able to welcome you back, Neuroshamblers. Now, before we start, I just wanted to give you a quick heads up that the release of the next episode is going to be slightly delayed. That's to allow me to concentrate on navigating the Easter holidays with my no doubt chocolate addled hooligans. However, to make amends, I do have a cracking episode coming up for you where I'm going to be talking about the topic of the week with a magnificent guest. We also have Neurodiversity Champions, Tiny Epic Wins, and the Perennial Favorite What the Flip moments, so let's dispense with the preamble and get shit started.

SECTION INTRO

Meet the guest.

Mark

So, this week's guest is someone I've been wanting to get on for ages now. Because not only is he a parent of neurodivergent kids, but he's also a comedian, an author, and a prolific content creator on the socials. At one point, a listener actually asked me to try and get him on. And I was like, I've been trying for months. But if there's one thing that being a parent of neuro different kids has taught me, it's patience. So I persisted, possibly to the point of annoyance, and I finally wore him down. So I am delighted to be able to welcome him to Neuroshambles. It's George Lewis. How are you doing, George?

George

I'm good. But already feeling bad about the time it's taken. I think the thing it was is, because we'd spoken ages ago about it, hadn't we? And As you know as well as I do, there are certain points where you are so up for chatting about everything. There are certain points where you just can't. And I think maybe the first time we spoke, it was like when we were mid assessment or mid argument or appeal for something. And we just I know I kept saying, oh, yeah, we'll do it, but just just just not yet. I'm so glad that we are now.

Mark

Yeah, no, don't apologize. With getting a guest for Neuroshambles, it's always a bit like fishing. You've got to put stuff out there. I've got loads of lines in the water. Occasionally, I get a bite, and that's fine. I understand. We are dealing with neurodivergent families, and life is chaotic. And I know that I am nowhere near the top of anyone's list. So I'm just glad that you are you bet.

George

You are now. You're at the top of my list.

Mark

Literally right here. So before we get into the meat of this particular episode, our listeners always Like to know a little bit more about your setup and the neurodivergencies at play in your household. So, what are you dealing with there, George?

George

So, we've got three kids. The eldest is diagnosed. Autistic ADHD.

Mark

Okay. Classic combo.

George

Yes.

Mark

How old?

George

He's a boy who is seven.

Mark

Okay.

George

And then we have a girl who is six. She is diagnosed autistic.

Mark

Okay.

George

And we have a boy, another boy, who is nearly three. And he's On the pathway, basically.

Mark

Okay, on the radar at least.

George

Yeah, yeah, yeah. He's on the radar. He's on our radar, definitely. We can see what's coming, but that's all good. And Growing up, my brother was diagnosed autistic really, really young.

Mark

Okay.

George

And he'd, I suppose, he's what you'd see as like the classic autistic boy. And there are other members of the family, I'm sure, that are undiagnosed, but I certainly had experience with it, but I've got a lot more experience now.

Mark

Yeah, yeah, of course. I guess it's always useful for me to recap my setup as well. So I've got three. neuro exceptional humans. I've got Jay, who is twelve, who is diagnosed Autistic ADHD. He has a PDA profile. I've also got Otto, who is 10, and he is also diagnosed Autistic ADHD, completely the opposite profile. He is very anxious, and Jay is, you know. Jay is explosive when he's dysregulated, whereas Otto is implosive.

George

Right.

Mark

Otto will cry and run out of the room and be Overwhelmed by anxiety. And then India was the one that was most recently diagnosed. Last year, she is diagnosed Autistic ADHD as well, a game with a PDA profile.

George

So it's hard getting anyone to do anything in your life.

Mark

Oh my god. Yeah, apart from me, apparently. If people aren't aware of of PDA because again, you might be new to the podcast and new to understanding about neurodiversity. Pathological demand avoidance, that is, which I I hate as a term. also known as pervasive desire for autonomy or persistent drive for autonomy or any of those different acronyms. But basically, it's a an anxiety based need to stay in control. So demands then are viewed by your child as a Threat to their nervous system and their fear response is triggered. And depending on what child you've got, that could mean kicking over the table and telling you're a twat.

George

Yeah.

Mark

Or it could be completely going nonverbal for the next two hours.

George

Yeah.

Mark

We've got one of each of those. So you know, it's a challenge.

George

I noticed that that is with with our daughter, that was something that we always noticed was the smallest well, I say small, that seems to diminish it, but what would seem to a lot of people the smallest demand placement just causes to just Shut down, just stop stop thinking, stop engaging, just completely. And before you learn about it and before you become familiar with it, the response seems so Not what you expectable, what it was, you know, you're just asking it to do something. Like, it feels such a Big.

Mark

Yeah, I just asked you to put your shoes on. What the fuck? Okay, thank you for introducing me to your setup. Let's crack on with the topic of the week.

SECTION INTRO

What's the topic of the week?

Mark

This week's topic of the week is something that I think probably all of us struggled with at the start of our journey with parenting neurodivergent kids because it's something that becomes very evident early on. And that is when you're comparing notes with other parents and when you see your little one around their peers in the playground, at some point you start to notice They don't really fit the neurotypical mold. There's a difference there. And with Jay in particular, it seemed that All of the parenting strategies I've read in articles or heard on podcasts or occasionally been told from exasperated strangers, none of it seemed to actually work on him. He was sort of immune to it, I guess. Because I think the vast majority of that sort of parenting advice is geared towards neurotypical kids. So as an exhausted and bewildered parent, you start to wonder, where is the user manual for my child? Spoiler alert, if you're listening, there isn't one. That's not what this is about. Our kids come with their own set of rules, and none of it is written down in a single place. So in this episode, I wanted to take a look at the lengths we have to go to as parents to learn more about our kids' particular neurotype so that we can essentially write our own user manual and be able to better advocate for them when they're in the wild. I think For everyone, when you start out parenting, you assume that you're going to be parenting your neurotypicals.

George

Yeah. Yeah, that's just the version that you have. It's just that's the it feels like that's the default version, isn't it? You have um And like anything, I mean, I suppose anything, you have a version of how something's going to be and it's never like that. But with parenting, there's definitely a way that I'd imagined it.

Mark

Yeah, go on then. How did you how did you dream of your parenting Journey?

George

Oh, you just well, for a start, I mean, I'm I hope I was going to say I'm sure everyone feels like this. Hopefully, everyone feels like this, or maybe we're just so arrogant. But I remember thinking, we're going to be great. We're going to be great. Yeah, we uh I'd read quite a lot of books about how to be a parent and I'd thought I'd I'm pretty sure I know exactly the techniques I'm going to use. I can see how everyone else has been getting it wrong all these years. And I'm going to everyone knows how they're going to parent until they have to parent. And you have the version of these imaginary kids that you don't have either.

Mark

And you're very well behaved, aren't they? These kids.

George

Oh, they're so well behaved. And they're just. constantly telling me how you know I'm they want to hear all my stories and they you know um but no it's it was a lot harder at first than we than we than we were expecting. And everything that seemed that we thought was meant to come easy just just didn't. And I think I had an idea that I wanted it. I thought, oh, I'll be a good dad. I'll definitely be a good dad. And I've got my wife who is amazing, who was like born to be a mum. And she was a teacher as well. So sh I thought that she there couldn't be anyone better qualified to be doing this. But like you said, you get we got to a point where it felt like things weren't playing out in the way that we'd expected. And a lot of stuff that people would tell us, oh, they just pick it up, you know, like all of the milestones that they're they're meant to hit. And we'd notice that our child wasn't. They were just like and we were thinking, they don't seem to be just picking it up, though. Like everyone keeps telling us they don't pick it up. And it's not like we're the type of parents who are just Leaving them to it, we were doing everything. Like my wife was doing everything possible, and they still weren't picking it up. So it's like, I don't know if they are going to pick it up.

Mark

There is a point early on where you start to go, I might just Getting it wrong? Am I just doing it wrong? Like, am I trying too hard? Because I think sometimes, like, especially when they're sort of in the toddler years. And you're trying really hard, and it's more stressful as well because they are, you know, they're not fit for the world as toddlers anyway. But neurodivergent toddlers, it's a whole different level of Like not understanding danger, and you know, there's a lot of things that are particularly alarming about that phase of their childhood, and you sort of look at other parents and you go They don't seem stressed. They don't seem to be panicked at every moment of the day. And like, they don't seem to be trying as hard as me.

George

Yes.

Mark

You know, you think, like, what am I doing wrong?

George

Yeah, and it sends you a bit mad because you think, oh, maybe everyone just feels like this. Maybe they're all looking around. And to a certain extent, I think every parent is going, God, this is harder than I thought. Or, God, this isn't what I expected.

Mark

Yes.

George

But. There was definitely points where I thought, surely theirs looks a lot easier than mine. I don't mean my kid necessarily, but my experience.

Mark

I know. It's like, can I have a go on yours for a little bit just to see what it feels like? You know, yeah, if he responds to his name or like follows an instruction, yeah. People are very reluctant to do that, by the way, just for the record, yes.

George

And you certainly feel like a failure thing when you're told about these milestones. And then, if they don't hit these milestones You're told that they're behind, and then you're offered help. And it's hard not to feel like you're being told you're not doing it properly when you're offered help to do it better.

Mark

Yeah, what sort of help were you offered in those days?

George

Well, the thing was, actually, this is a bit that I missed out with another diagnosis my son's got, but he got diagnosed with, at the time it was called verbal dyspraxia, it's now called apraxia of speech.

Mark

Right, okay.

George

But basically he couldn't talk at all. It's not a particularly common thing, but what it means is it kind of language gets scrambled between your brain and your mouth. You can't even attempt, well, you can attempt words, but it's nothing like the word. And that's what it was with him. But then that meant we put everything down to that. So we're like, well, of course. he's gonna be delayed in everything else if he can't communicate. And of course, he's gonna have social difficulties if he can't communicate because he'd open his mouth and it would be nowhere near. So there was a lot a long time where He couldn't say anything. And some kids never speak if they've got it. But he had that really intensive speech therapy. And for a long time, it was that me and my wife could understand him, but no one else could, but we could kind of translate to the to the world for him. And anyway, eventually, if we fast forward through a lot of stuff the if you were to speak to him now you would you would have no idea his speech is so clear right okay so he did catch up like everyone was saying but they had no idea they were just winging it

Mark

Yeah, yeah, yeah, yeah. Okay. But obviously in the early days, that's incredibly stressful because there people are trying to give you advice about how to do it, not qualified or anything, obviously. And you're trying to do what you can and Just being incredibly overwhelmed by it all, I guess.

George

Yeah, and not knowing and feeling like there was no one to tell us what to do. And that's when I suppose all the research and stuff started when we were like, Well, we've got to try and figure it out ourselves. Certainly my wife, that was what she did and got to the bottom of it and did what we needed to do to help him. But I think then we thought everything was just that. And then our daughter had a regression quite early on. And again, we had no idea what was going on with that. That was terrifying because we didn't even know that was anything to do with autism. So we had no idea what was going on. It just we'd just lost her. It just felt like we'd lost her overnight. She lost everything.

Mark

What sort of age was that?

George

Like sixteen months or something.

Mark

Okay.

George

She'd started doing a few things like waving and saying the odd little bit, and then she just lost it. She was just vacant. Like it was like she didn't even acknowledge we existed anymore. It was horrible. It was like it was the worst thing. And then when eventually I mean, that was the whole process of that was one of the worst things we've been through because you're just so worried when that happens. If no one's explaining to you what it might mean. And she had all different things, 'cause they have to rule out everything then, and she'd having brain scans and things to make sure that but anyway, eventually when they said to her, Oh, we might be looking at autism, that's when they said If you looked at your son as well, and

Mark

So, she was the one that was diagnosed first?

George

No, she wasn't. She was the one that was, it was first suggested by a pediatrician. it must have been two years old. She didn't get a diagnosis until a few months ago, basically, because it took so long, this pathway. And I think over that time, she learnt to just mask it and and fit in, keep it all inside. So by the time it came to the diagnosis with a team that I don't think was the best to do it. They couldn't see it. So then we had to go to these private specialists in girls to d to and they saw it straight away and immediately validated everything that we thought, but it was such a long, horrible journey to get it.

Mark

Well, it is, I think, everyone's journey to diagnosis is is knobbly and bumpy and Yeah, fraught with hurdles. So they flagged it first: of like, oh, is it, is it all, could it be autism? And at that point, you didn't know that your son was potentially autistic. And obviously, as a parent, all of us have gone. What the fuck is autism? We don't know, right? I like we don't know at the start, I don't think. Like, so your brother was autistic

George

Right, yeah, so yeah, he's autistic and was from a very young age, but I kept using that as a reason to shut down this possibility because I used to be going, Well, he's not like my brother, exactly.

Mark

Yeah, because autism is so multifaceted, because there are so many different presentations of autism, you don't look at that's exactly what I was like with Jay at the start. I was like, well, he's not. What I think an autistic person is, right? Because obviously I know all about it. I've seen Raymond and Forrest Gump, right?

George

Yeah.

Mark

So there's neither of those.

George

Exactly. And that's what a f it's strange now because then if I if I see someone else's autism denied with that reason I think it's really upsetting and offensive. But I know it's what I was doing a few years ago. And it's what yeah, 'cause it's what you know, isn't it? And certainly with my brother, he was like exactly what we were all told an autistic person looks like. So it was obvious with him. So I'd be like, well, our son and our daughter can't be because they do these things or they do this thing. Whereas, actually, obviously, I know now. after years of living it and learning about it, that like you said, it can be so many things.

Mark

Yeah, absolutely. I mean, when I did that initial research because as I say, I'd like I thought I knew what it was. And they describe it as a spectrum. And in my head, my idea of what a spectrum was was like you got like a continuum a sliding scale. You've got a little bit autistic here to massively autistic here, and everyone's somewhere along that timeline, right? That was how I perceived it. And so I look at Jay and I go, Well, he's not massively autistic, so but he's probably a bit he's at the shallow end. And, you know, so maybe it's going to be easy, or, you know, which is ridiculous now. And I d so when I started looking into it, I realized how nuanced autism is and how many different moving parts there are that then present in your child in various different ways. So I I remember looking at the there's a colour wheel analogy where you look at it on a colour wheel and there's discs cut into different segments. Have you seen that one?

George

This is like a spiky profile.

Mark

Exactly, it's that. And so, you know, and the sections are, and I'll read them out because it was, it gives. People, an indication of just how many different facets there are, I think. And this isn't even all of them, but eye contact, meltdowns. social issues, sensory sensitivity, need for routine, executive function, speech and language difficulties, special interests, anxiety stimming, emotional regulation and motor skills. And everyone has a varying degree of those, but For most people, the degree is zero. Right. For neurotypicals, the degree is zero for pretty much all of those. Or they might have low scores on some of them. But for autistic kids. You know, for Jay, there were some things he really struggled with. He was absolutely fine with eye contact. He would stare me down if I'd wronged him.

George

Yeah.

Mark

No problem there. But for social issues, Like, he's really high on that list, and emotional regulation as well was like a real problem for him. So you start to build it up. And I don't think that colour wheel analogy It's not quite right for me. And the one that I heard that really resonated with me was the mixing desk version of that. Have you heard of that? So, if you imagine all of those things on the faders on a mixing desk, and then they're all sort of pushed up or down to some degree, and obviously. if you push faders up on a mixing desk, it sort of distorts the output.

George

And I think that's sort of Yeah, I think that's a much better way of because you're right, the word the word spectrum definitely conjures up the image that you had where, and we've all heard that thing of people going, Oh, well, everyone's on the spectrum, so I hate that. It's not true, it's just not. That's not we've had people who are like Professionals that have worked with the kids who've got, oh, well, we're all a bit autistic. And I'm like, really? No, we're not. We're not. That's not how it is. But yeah, I think the There was loads of things that we'd noticed in the kids that you don't know are necessarily aspects of it. But we always found it strange with our son. He never felt pain, really. He was like. And I think what we've later learned is like some things are turned way up, but some things are turned way down. Exactly, yeah. Sometimes like. Do things like whack his head in a way that you'd think would make a grown man cry and really be that bothered about it. And we used to, this is crazy. Or like one of the kids would. not be bothered about filling the nappy and having it on for hours afterwards, but wouldn't be bothered about the slightest bit of Wet on a foot or something, or it's like yeah, yeah, yeah, and and we notice with ours as well because there's more than one. You have some that they're You'll have a son who he'll want loudness, big rough play, big, everything big, whereas she wouldn't need everything Everything's small and everything, everything's too loud for her, and she needs it quiet and stuff. And obviously, she's a parent managing that.

Mark

It's a fucking nightmare because they're just setting each other off. It's exactly the same in our house. Yeah, and the pain thing is really interesting because Jay had that that I think. Like he used to take some proper tumbles in the playground and we would just sort of You know, as a parent, you don't want to make a big deal, right? So you don't want to be over-dramatic and rush over and go, Oh, my baby, what's wrong? So you just sort of go, Come on, get up, off you go. And he would. Yeah, he'd be fine. So we're like, oh, we're smashing this parenting lark.

George

But we had that with the pain things. We'd look at each other and go, well, if he's not going to mention it, let's. Let's not mention it because he's incredibly hard, this kid.

Mark

But then Otto would do the same thing.

George

Yeah.

Mark

Right? So Otto is two years younger than Jay. And so he'd fall over and we'd be like, oh, just get up and run it off. Same thing, right? But he would be in absolute meltdown. He would be beside himself with pain and um he'd be in floods of tears and us just kind of going, come on, run it off, is r made it worse because we're invalidating the A very real feeling for him because his pay threshold is super low and Jay's is super high. And we're trying, we think we're sort of parenting the same type of child, and it becomes Quite clear that you're not.

George

Yeah. Exactly.

Mark

But that's not written down anywhere.

George

No.

Mark

You know, there's nowhere that tells you that. You just have to work it out as you're going along and go, and it's. So much of what we do is sort of observing. It's trial and error, isn't it? It's observing, oh, shit, that went wrong.

George

Yeah.

Mark

Okay, we'll try a different approach for this time.

George

Yeah, and that's the only way you can do it. And that's what was quite. I don't know. You end up learning that that's fine. That is the way that you have to learn because I know you can feel so guilty early on when you do get things wrong, especially if it. Results in a meltdown or upsetting your kid, or there's so much guilt when you don't do it right.

Mark

Yeah, yeah, yeah.

George

But I think that's it, yeah, once you accept that that is the only way that you learn. I mean, now we've got our third kid. I think we're just a lot more relaxed and optimistic about the future for him and everything like that. But as there's a lot less worry than there was with the first two. But I think we're a lot we're a lot kinder to ourselves about it as well, and we just kind of go with it a bit more.

Mark

Yeah, that's really important. And also just having in the early days, you realize You know nothing. You know, and everything that people are telling you to do isn't working. And no one's really helping out. And before you find A community of other parents of neurodivergent kids, which is really important and something that I talked about in my last episode. But when you're sort of you feel a bit isolated And you know nothing. It is incredibly worrying. And whereas now, yeah, like you say, I mean, I'm three kids in, and you're so I'm sort of like, well, I still know nothing. But I'm actually okay with that. I'm building up more information about who my kids are. And I'm okay with not having all the answers. as long as I'm sort of doing the research right and trying to think about it and trying to change my strategy. As strategies as a parent on a child to child basis.

George

I think that's it as well, yeah. It's it's being okay with changing how you are. Because that's what when we got to the point where we kind of became quite sure that they were autistic. And we started then reading about how to parent autistic kids as opposed to neurotypical kids and things to try and then looking at Instagram pages about with from other parents who are trying different things. And once we became open to doing those things And trying them. Obviously not. Everything works, but we found a lot more that did work.

Mark

Yeah. And I think that there is definitely a case of being led by them rather than you know, I think when you first when you first start out as a parent, as you were saying, you have these ideas of how you're going to parent and also who they're going to be and how you're going to get them to be who you want them to be. And I think when you realize that you have neurodivergent kids, it's much more about show me who you are. Show me how I can work with you to do shit. Yeah, basically. You know, show me how to parent you, I guess, because they will definitely show you how not to parent. Like straight away that they will be I mean, they're very responsive to background.

George

Yeah, exactly. But the way that you've summed that up there is so spot on and so lovely as well, because I feel like that is the key to it, is to go Who are you? And let's try and get as much of you as possible. So I think that's what certainly with our daughter always the worry was that she was learning to cover up too much who she was. because that's the way the world was. And that's for us why it was important to get a diagnosis, because that sort of says it's okay not to be like that. You can be like you we love the way that you are, and we love you being as much you as you can be.

Mark

Yeah. And have you found that she's sort of changed since the diagnosis and since almost being given free reign to be as authentic as possible, to not have to mask? And I get that that is, you know, with India, that's quite a big thing. I mean, India is eight, and at school, I think she masks quite a lot. But I also know when she gets home, it's all out. It's amazing. I love it. She's so funny.

George

That's what we say about our daughter. She's just when she's herself, she's so funny. And I think it has. I mean, like I say, it's only recent. It was the end of last year. And she's so young anyway that you're speaking to them about it in not the way she's so it's not like she's going, Oh, I'm autistic. Now it makes it she but we can start talking to her. We start talking to her about what autism was and about her and a brother. And I feel like it's certainly on some level, yeah, given her permission to be more herself, 'cause I feel like she's been happier since then.

Mark

And if it's I like it's not explicit permission, is it? It's just like I'm I'm not going to try and dampen down these things that I might have done, you know, before I knew that you were neurodivergent. I might, you know, I might tell you to not stand on the table. You know, or to not sleep in your shoes, you know, simple shit. And now, just like, you want to do that? That's what's, you know, it cannot hurt. It's fine. We'll work it out. And so they are given... They're not squashed down in our house. They're given sort of artistic license to be as fizzy and to be as loud and bold and colorful as they need to be. And I think that's really important for them because I also know that the outside world is not giving them those accommodations Even if you are in a very nurturing school who, you know, try and accommodate them to a degree, not everyone's going to get it. So you're giving them license to grow, to be themselves. Yeah.

George

And I think if you can do that. as a parent, then that's that's amazing.

Mark

Takes a long time to get to that stage though, I think. It's it's not that is not an easy place to get to. It's no, and that's it.

George

And I would never want to like blame any parent who isn't at that or maybe doesn't want to do that or because it is. It's not like I remember when we fer as I'm sure a lot of people, when we first heard the word autism You feel it's bad news. That's just how it felt. It felt like because it's told that it's not something that you'd want and you're in denial about it. And it feels whereas actually with our youngest, we did have a bit of oh, here we go again, like like this is going to be exhausting. But but it doesn't it doesn't feel like bad news anymore because we know so much more about it and we know all the brilliant things about it as well. But I'm always so wary about saying stuff like that because I know that there are a lot of parents who've got kids who it's too much. It's it's too challenging because and obviously, as we know with autism, it can be related to other global learning difficulties and delays and stuff. And for some people you know, it makes their life so hard that it's a bigger it's not as easy to go, oh, yeah, let's just embrace it all.

Mark

Yeah, I completely agree. And in the early days, it was not I was not on board going, hey, this is a wonderful thing. And there are times where it's just like, oh, fuck this. When, like, you know, when Jay was in, like, he went through quite bad burnout. Point and he was very angry and very aggressive, and he'd be, you know, um, and he'd be saying awful things. And I was like, Hey, let's celebrate your freedom of expression. It's like

George

Yeah.

Mark

Dude, I am doing everything I can. And you've just said I'm the worst parent in the world. And you're fine. I guarantee I'm not. Dude, they're like... But you can't. I mean, you can't make that. Argument with him. He's not, you know, he's in meltdown. He's not, you know, he's not open to logic and rational debate. So, yeah, there are but there are some times, as you say, where you just go, This is fucking Excellent. It's great. And that has happened with my third child as well, I think. To the point that the third child came along, it's like, Yeah, welcome aboard. This is what we are. It's absolute mayhem. I wanted to talk a little bit about the point where when you get diagnosed, did you go NHS with your with any of your diagnoses?

George

Yeah, so with our son, it was NHS and Basically, it got to the point where he'd been on the waiting list for a few years or whatever. It'd be a long, long time. But eventually, they Agreed to do both of them at the same time, my son and my daughter. So she'd been waiting less time, but I think because my wife argued for it, and eventually they said, Okay, we'll do them at the same time. And then Yeah. It was one phone call at the end that basically said, Yeah, we think they said he is and she's not.

Mark

Really?

George

Yeah. And then we got a like a letter in the post, which is just like a leaflet with a a picture of a boy playing with a train set on the front and a load of links to things that we would just No longer relevant to us.

Mark

Is that what you got? Because yeah, it's it's interesting, isn't it? Because when you go the NHS route or you go the local authority route. When that happens, people get, as you say, like a little booklet. Have you still got that booklet? Have you looked back at it?

George

We're horrified by the thought and thought that that's what you get. And that was at a point as well where we'd got what we were sure and has now been vindicated was the misdiagnosis from a daughter. So we were like, if you think That this is what autism is. It's just the boy playing with his trains. No wonder you're missing it in girls, you know.

Mark

Yeah, it's like a 1950s pamphlet they've dusted off and given you.

George

Yeah, exactly.

Mark

Yeah, well, I so I dug out the booklet that we got. Well, actually, that's not true. I didn't dig it out because as soon as I got it, I flicked through it and went, This is fucking nonsense. And I threw it in the bin. But then I was like, I wonder what that said. So I went on my local autism support group and said, Has anyone got this booklet? And someone went, Yeah, I've still got it. It's hilarious. So I went and picked it up. And I've got it here. And some of the stuff in there is I just thought because part of you when your child gets diagnosed thinks Finally, we have opened this treasure trove of things that are going to help us. We opened up this treasure trove of services to help, and someone's going to unlock this. dusty old briefcase and pull out this manual that we've been waiting for, right? Here is exactly how you're supposed to parent your neurodivergent child. And you're like, oh, finally, I've got the answers. And then you get this fucking leaflet, which is um I think insubstantial is probably the kindest way of putting it. Uh so I I was flicking through it and I thought I'd pick out some of the bits in it. Here it is, by the way. This is that there. It's called Information for Parents of a Child or Young Person Recently Diagnosed with an Autism Spectrum Condition.

George

Okay.

Mark

So a sexy title. There's actually quite a lot. It's like 34 pages long, and it's quite, you know, it's quite well designed and well put together. But the content is questionable. So because the thing is, when you get this, right. We've already done a lot of research.

George

That's it, isn't it? At that point, you're years down the line. If you'd have just waited.

Mark

Who's it for?

George

That was my worry for a lot of kids, because I'm sure there will be parents who maybe don't want to hear it. So during that time, they might not be doing all that research and they might just be thinking, well, we'll wait and see. And then

Mark

I can't believe that. I think a very small number of people are like, just let wait for them to tell us and then I'll do the research. But for everyone that I've ever spoken to, they are worried way in advance. They're trying to get answers for Years before the actual diagnosis comes.

George

Well, I guess.

Mark

So, quite maybe there is someone who gets their kid diagnosed and goes, Well, I suppose I'm going to brush up on what this autism thing is. No, everyone's like, I could have written this booklet.

George

Yeah, no, you're absolutely right there.

Mark

But what is useful is it does tell you what the local services Are, which you don't really know. I mean, you might be told on the local autism support Facebook group or whatever it is that you join that there might you might get an idea, but it's good to see it all written down. That was useful. There's a section about research, further reading you can do if you want to find out more about it. And it says there's so much information out there that it can be overwhelming. So here's a list, right? 10 books on the list. That's the like the light reading that they give you.

George

Yeah, exactly.

Mark

Ten books to start you off. It's like, Jesus, like see how you get on with them.

George

And then

Mark

But then, yeah, we'll give you the deep reading. Because my life is already absolute chaos. Like, I don't get time to finish a cup of tea.

George

Yeah.

Mark

So I'm not going to get through 10 books. And by the time it is like I could potentially feasibly read, I'm knackered. I'm knackered. I'm not going to be picking up a book and looking, you know, at some deep analysis of a specific facet of autism. So That was already quite stressful. They also recommend five books for the kids to read themselves.

George

Right.

Mark

Five.

George

Yeah.

Mark

And five for their siblings to read. So you might as well start a fucking library. And. That as I got to that point, I was like, I'm not sure you've got your finger on the pulse of what it's like to live in a family of neurodivergence. And then I got to the top tips section.

George

Oh, God. Yeah.

Mark

Which is absolutely lovely. It's it's gold. Now I know they mean well. Like let's caveat with that. I know that they're trying to just throw out some crumbs of advice to people who are looking for anything. But some of it is definitely not anything I recognize. One of my favorite ones was don't sweat the small stuff. One chore left undone isn't a big deal when your child has completed two others plus the day's homework. It's like, whose fucking child are you talking about?

George

Yeah, it's that's weirdly like I don't know. It's like, in some ways, very specific, because it's a very specific situation, but it's also like the type of thing that would be written on you know, like a piece of wood that's hung on someone's wall

Mark

Yeah, like a 1950s mothering manual or something. Like chores. Have you ever? I mean, I've got two PDA kids. Yeah. Chores. Like, have you ever tried to get two PDA kids and one with zero executive function and a crippling fear of failure doing chores around the house? And also, they think that this is the stuff that we're worried about. Well, that's they genuinely, genuinely think that it's like, actually, you know, I'm at. Absolutely fine with the fact that he's literally standing on the bookshelf. But the fact he's only done two of his three chores is unaccident.

George

Don't sweat the small stuff, Mark.

Mark

And don't get me started on the daily homework bit, it refers to. It's like, no. No. Do they think the issue I'm having is that I'm trying to run too tight a ship?

George

Yeah.

Mark

That is not what is going on over here.

George

Yeah, I know, because at that point you want answers and you want things that are going to make Things are easier, and you want things that are going to make your kids happier that are going to work, and you can quickly use them. And, or you're going to send someone to help me. Is there anyone that you can send to help me to show me?

Mark

That honestly would be really useful actually.

George

Well, I kind of thought at one point, I thought, oh, I'm sure it gets to a point where On show diagnosis, they go, Okay, now this is the team that's going to be on hand to and yeah, yeah, they just like all descend on your house and go, Right, okay, yeah, yeah.

Mark

But no, that's not that's not what you get, you get this, this It's booklet. Yeah. It's like, I do not run a tight ship, guys. My ship is loose as fuck. And it's sinking. Yeah. Like homework is the least of my concerns. I have long since stopped sweating about the small stuff. There is no small stuff left to sweat over here. It's the big shit I'm sweating. Like eating and... literally eating and sleeping and Getting them an education that doesn't result in a complete mental collapse by the time they leave education. You know, just the simple shit. I'm not it's.. it feels like it's been written by Someone who hasn't parented neurodivergent kids, maybe.

George

Yeah. Yeah.

Mark

One of the other bits of advice is quite fun Take breaks. Simple as that. Take breaks. Friends and family can be wonderful about offering to babysit, but you may feel guilty about leaving your child.

George

It's not that. That's not the reason.

Mark

Yeah, I would not feel guilty. Dude, I would like, you know, I love my kids to bits, but I would be skipping out of that door, guilt-free. There's so much to unpick in that small statement. Like, I love my parent friends and my family. They're great. But they have shown absolutely no desire to look after my kids while I go on a relaxing break. Because they've seen me do it and gone, fucking hell, that is hard work.

George

Yeah. I think the thing is that like you mentioned that earlier as well and I remember certainly early on there was a feeling like I never felt like I don't know, I felt like people would offer to help us, but also I felt like we couldn't accept that because I felt like It's not going to work. It's just not going to work the help that you're offering.

Mark

Okay. Yeah.

George

Like, this was before any diagnosis, but it was like we'd question ourselves thinking, are we just being too precious? Like, everyone leaves the kids with other people all the time. Like, why? Why can't we do it? Why can't but we just knew that our kids would not handle that at all. Did you try it? Not really, because they were scared of everyone. They or not as well, not scared, but they would. you know, if we had if I had my family come round, my son just go and stand in the garden, like and I'm thinking, there's no way I'm leaving I can disbelieve him, you know that would be You know, it's not it's so far from a possibility at the moment. And there was the odd time, like in an emergency, where it would happen, but I think it was quite traumatic both for the kid and for the person. trying to do it and that made us think surely not everyone is dealing with this like yeah no exactly but they're better I mean it is better now like Now they're older, it's more of a possibility that they'll stay with certain people. So it is okay.

Mark

That's good. So you've built your little team of people who would safe people for your kids.

George

Yeah, exactly. Yeah. So, um Yeah, good good advice on the light on the leaflet on that one another fun one

Mark

Support your child's eating by having meal times in a relaxed atmosphere.

George

Oh, it's so chilled out at mealtimes.

Mark

Yeah. Reduce visual stimulation or background noise, it says. My children are the visual stimulation and background noise. It's their fault, it's not relaxing meal time. It's not on me, man. I would love to have a meal time in a relaxed atmosphere. That would be amazing. But my kids are ADHD. Like, they need the chaos. Like, Otto. Is off the charts at ADHD, and he needs multiple things going on at one time. So he'll be like asking quiz questions to the other two whilst reading a Bino and trying to get spaghetti in him. Yeah. You know, it's not a relaxed atmosphere.

George

Those things are so hard, are so hard to fight with, like, your natural reaction to them, because that's the same with our eldest. He's so hyperactive, and so whenever he's eating, he's like Doing something else at the same time, he's up on his feet and he's moving around. And you can't help yourself a lot of the time. Just be like, sit down while you're eating. But also In theory, when you take a bit of a distance, you're like, well, I want to be understanding that he finds it difficult to sit down, and certainly, like, when we're doing other things with him, when he's like practicing his spellings and stuff, we're like. Be as active as you want. Be playing at the same time as you're doing it. And that's the way it's. And we've found that that works, even though maybe to other people that might look like traditionally not our kids should be when they're doing the spellings. But when it comes to eating, it's I find it so hard to be like, Yeah, you just run around kicking that football while you're eating the beans.

Mark

I definitely used to be like that. And I guess that is reflective of the way I was parented. Because it was like, sit down, eat your food, stop messing about.

George

Okay.

Mark

But I realized how many battles I was having every day. That I genuinely reflect on and why am I doing this?

George

Yeah.

Mark

If they're eating, because that is all a meal time is for, is eating. Do you know what I mean? Like, I've not I've long since given up on meal times being like a time for the family to engage and tell each other how their day went, you know, like all of that stuff. It's like Let's stop you dying by getting food in you and let's do it without having a massive fight. And I found that not trying to enforce specific behavior at mealtimes was easier on me And it was much happier. Now, what that has resulted in is not pretty. Like, If someone was to walk into our kitchen at a mealtime, they would probably call social services because it's absolute mayhem. But I don't care. You know, like because they're happy and they're expressive, and crucially, they're eating. But it's a really hard thing. to get away from, I think. It's such a difficult thing to let go of.

George

Yeah. We we have other things as well, which like are smaller things that we didn't know This is what I'm talking about when someone gives you a bit of advice that you're like, oh, and we've had some amazing people, occupational therapists, who have gone. Have you tried this? And it's just unlocked something. So both of our kids have different chairs that they I'm looking at them now, but different chairs that they sit on to eat. So my daughter has, I think they're called easy chairs, which is like. supports you a lot more 'cause she's like hypermobile as well. So we were told when she's trying to eat, there's already so much of her energy is just gone on just trying to sit properly in a chair and just trying to hold knife and fork in the right way, that no wonder she can't deal with A load of new foods on the on the plate, and she can't, you know, it's just she's already full. Whereas the moment she started using that, she suddenly became a better eater. So when we were always worried about, oh god, she's not eating anything and she's just she's got all this thing about food, actually something completely different. Unlocked it for her.

Mark

She was just trying not to fall off the chair.

George

That was where our energy is going. My son's trying to fall off the chair constantly, but now we've given him a wobble chair. So basically, he sits there, but he's back and forth the whole time, but he's actually sat at the table. So it's like, oh, this is another little thing actually that I didn't even know that they existed.

Mark

Finding that bit of research when you You know, because we just spend so much of our time thinking about this. Yeah. That when you find something that suddenly works, a favorite example from my lot was when Otto used to get completely overwhelmed. Yeah, at breakfast time, where I would say, What do you want for breakfast? And he would panic because I've asked him a question, and he knows that he needs to process that question. think of what his response is and get back to me. And he would just get in his own head and he would just be it would be too much because we got, you know, a number of different breakfast cereals. It was overwhelming to him. And so he would end up either running out of the room or crying every single breakfast time. And I can't remember what research I read. There was a bunch of things that made me rethink it. And I was like, okay. What if I, instead of just asking him, just give him a timetable? So when he was all quiet and calm, what I did was say, I'm interested in what your favorite breakfasts are. But not a breakfast time. It was just a conversation. And he told me, and I wrote it down

George

Just shooting the breeze.

Mark

Yeah. Yeah, just having a chat. Hey, my favorite breakfast is Cheerios. And once he told me a list, I just made a timetable with all those things on it on every day. So at breakfast, he would walk in and he'd look at the timetable and know that it was Cheerios that day, or it was porridge that day. And I've already pre-vetted the options because he's already told me in a moment of calm that he likes those. And so at breakfast, I never had that problem again. Like, that wouldn't work with Jay or India, right? Because They like novelty. They couldn't have the same thing every day. Right.

George

Yeah.

Mark

So that would cause them dysregulation. So I've got to find their strategy, right? And that's the whole thing about parenting neurodivergent kids. But there are so many different elements to it. And you've got to find it's like lockpicking, isn't it? It's like finding the right combination for that one child.

George

Yeah, absolutely. You're right. You're completely right. I mean, that is so and I bet those things as well, you don't even realize that you kind of forget that you've that you do all that stuff until you talk to someone about it. You're like, oh yeah, I suppose that is quite a lot of a lot of effort and a lot of thought and trial and error has resulted in that thing. But yeah, that's it. You just You learn your kids, don't you?

Mark

Yeah. And there is that, you know, there isn't a case of going, all right, I know about autism now. It's like, no, I know about this specific blend of autism in summer.

George

Yeah.

Mark

In the winter, it's different. Yeah. And, you know, if it's noisy outside, it's different. And like there's so many different variables and it's about and that's why we have to do so much research.

George

Yeah.

Mark

I think. Because there are so many different moving parts to what they're experiencing. that we need to do everything that we can to try and keep them regulated. And it's none of that, crucially, is going to fit into a booklet that a local authority can give you Just after you've got your kids diagnosed. And they're fighting a losing battle. It's sort of a pointless exercise because. There's no way you can. Like, I get that the local services stuff is useful, but top tips, just don't bother. Right. They're better off giving you a scrap of paper that says lower your expectations and make it up as you go along.

George

Yeah.

Mark

Good luck.

George

Yeah. It's so true. And it it's right 'cause you you know it's easy to think, oh, what the hell is this? This isn't going to help us. But I I can't think of what the answer is. I think we'd spoken last time you and I spoke. about I was trying to write a book about being a parent to neurodivergent children. And I mean, it was never meant to be any kind of manual, but I'd hoped it would have at least some Tips, some top tips. But it would have some bits of things I'd learned and advice. But as I'm writing it, I'm thinking Yeah, but I'm saying this works for one of my kids. It doesn't work at all for another one. I mean, there's something about, I think it's great, like you've got this podcast. And you can discuss it. And this is how I often learn things: I'll listen to something or read something someone's written on Instagram or something. And I think, oh, that sounds a bit like my daughter. Maybe we could try that. And maybe it works, maybe it doesn't. But the moment I was thinking, the moment I put this in a book, I feel so it gives it too much authority because I changed the thing that worked for me last month doesn't work this month. And the thing that I thought last year. I don't know if I think that this year. And then maybe next year, I'm going to have the opposite opinion again as we learn different things. And you can have I find as a parent to Autistic kids, you have you can have really strong opinions about different aspects of it and education and the way things work and the way the world works But also, I love the fact that I'm open to be persuaded on things or learn different ways of doing things and that. And the process of writing a book, I just found it so The thought that I would get these things wrong.

Mark

Yeah, but they wouldn't be wrong. Like, this is the thing, and this is the thing of that booklet. They will be right for like one person. Which is you. So to assume that anything that you write could necessarily apply to Even like four other people, given the different blends of the different characteristics, is really hard. And I think that's why it becomes so difficult. And that's why, when the research we do, like you're saying, like the stuff on the socials. Is like, here's a tiny thing that I do with my very specific neurodivergent child, and you go, oh, I'll give that a go. but it's not like a whole suite of strategies. I think it's like it feel it's a little bit like trying to put together a jigsaw. when someone has hidden all of the pieces.

George

Yeah.

Mark

And you have to go and find the little piece that fits to the that jigsaw that is the one child and you collect it and you try and piece it together from there. But you've got to find those pieces first.

George

Yeah.

Mark

And it feels like now, because, you know, I'm slightly uh later on in my journey than you now. So my my eldest is twelve, just about to become thirteen. And it feels like now I'm starting to build more of a picture because I've had longer to find the pieces, if you like. And it does get easier over time. I'm not just saying specifically to you, but to anyone listening, it does. From that first From when you know nothing and you're looking for answers, and then the realization that you're not going to get given the answers, so you need to go find it yourself. It gets easier as you start to build more of that puzzle together.

George

Yeah. And that's a really good thing to say, actually. And that's, I agree with you. And I think it's not something, I think, just generally with parents. you often have people going, oh, you think this bit is hard, wait until they do this. And you think, oh, well, you just wait for every single stage of life.

Mark

You're not helping, Ian.

George

I think The truth is that, yeah, even though there are obviously fresh challenges all the time, the fact that with each month and year that passes, you know this person even better and you've experienced more with them and you've learnt about what is good for them and is bad for them, helps equip you for all of the stuff that is coming up, I think.

Mark

Yeah. Important thing to bear in mind as well is that they also evolve. They do get there for certain themes. You kind of sit there going assuming. You know, that they're never gonna level up on certain things and that they're always gonna struggle with certain things. And then they'll just do it and it won't be a big thing. You know? Once they've just had the space to do that and it's not overwhelming to them anymore, then They just pick it up and that's it.

George

Yeah.

Mark

It's just a thing they can do.

George

Yeah, there are so many of those things where at one point we thought it was never going to happen, or this was just never something that they'd Be able to do, like use the toilet or something that we just don't know what it might never happen. And then it eventually does, and then that's just it. And you need to forget about that worry. That wasn't even, you know, it's just not a present worry in our life anymore, which is amazing. But it's like But before those things happen, having people tell you, oh, don't worry, they get there eventually. You just don't believe it because you're like.

Mark

But that's the thing, though. They are right.

George

Yeah, yeah, yeah.

Mark

Just they just don't realize, like, you know, they're not anywhere near as right as they think they are.

George

Yeah.

Mark

But you know, they're going to like walk past your kid riding a bike and go, You see, I told you, says, oh, fuck you, Ian. I don't know who Ian is.

George

Yeah, I know who Ian is

Mark

But, fuck him. One thing that I really want to shine a light on. is the amount of overwhelm that comes with taking on all of this research and trying to find all these puzzle pieces and trying to learn how to parent each one of your children. Because once you lift the lid on it and you look at all of those different facets that I mentioned before to try and get to grips with. There's so much out there.

George

There's so much.

Mark

And it's daunting. Like, I've got. I would imagine several thousand hours of research under my belt. I've done like 53 NeuroShambles episodes now. I'm still finding stuff I don't know. with my kids. I'm still finding new strategies and thinking like I don't think we can ever stop learning. And that can be a bit disheartening.

George

Do you know what I mean? Yeah, oh, of course I know. Yeah, I definitely do. I mean, I'm looking, I'm face to face with bookshelves full of books on the subject that I can't even bring myself to. I mean, my wife's amazing. She read so much about but I just can't even i bring myself because I think I'm al there's already too much for me to learn and process just from the the amount of news articles I read in a day or the you know, the things that I see posted online and just spending time with the kids. I think, God, have I got time to take on all this? Plus, there's always more. There's always. More

Mark

You get down that rabbit hole, don't you?

George

Yeah, but then I have that guilt of thinking, like because I don't know, I certainly have it with me, and I felt this when I was writing the book, and I also feel it probably explains why. there's a delay when someone asks me on a podcast about neurodivergence because I often I'm like I get to the end of the day and I think I can't have any more autism. Like or just not in a way that just that I think I need to escape with something completely different. That's what that's often Where I am, because I feel like it's just so much of a big thing in their life already. But then I feel guilty about that sometimes because then you do these things and you have chats with people and other people who are in a similar situation and you do learn stuff and it makes you feel better about things and you get things that you can help. But knowing that there's loads of information out there that maybe I'm not accessing is overwhelming.

Mark

Yeah, of course.

George

I think God, I know.

Mark

Yeah, I mean, that's the thing. I mean, I do a podcast about it. And there's so they I spend so much of my time with this when I'm with my kids, you know, during the day. like fully parenting, put it into practice. And then neuroshampus takes up so much of my time because I'm researching stuff. And I'm trying to come up with ideas, and then I record it, and then I edit it, and it's like constantly thinking about it. My brain doesn't really get a break from it. And you're right, I do feel a bit guilty when I don't do that. But I'm also aware that this is a like it's a platform to be able to talk to other people. about stuff that we're learning or to learn from other people. So so many of the things that I've learned that have been the most useful have been from me talking to people on this podcast I speak to some amazing people who completely kind of shift the way that I think about things. And it's wonderful when that happens. And there are certain episodes that you'll hear like a light bulb go off in my head. A little moment where it's like, oh, I should have put like a sound effect on it.

George

Yeah, yeah, yeah.

Mark

Where it's like, ding. But there are moments that have completely influenced. The way that I parent just because someone's put it to me differently. And that's wonderful. And that just comes from immersing yourself in it, I guess. But then there are some things that come along, and it's happened recently. Where it's like, I can't, I don't have the capacity to take on any more. Like the SEND White paper being released by the government recently. I still haven't been able to engage with it. And I know I'm supposed to. And I know I should have an opinion on it. And people have actually asked me my opinion of it. It's too overwhelming for me to fucking deal with at the moment.

George

Yeah. I know it's I I've felt exactly the same with that. On on that day I'd got asked For comment on it and Autistica, the charity that I'm a patron of, they were putting out a statement and they'd asked me to say something in the statement. And I'm thinking, I was just like, I I've not got anything that I can say. And the thought of reading it all, processing it all, Feeling the impact of it, thinking about how that affects the future, and then having an opinion I want to put out to the public about what that is. I thought, I'm not even going to try on that one.

Mark

Because it's just yeah, are they expected to have read the entire SEND white paper as it was released and then form a cogent thought to articulate that on like Four hours sleep.

George

Certainly, the charity didn't. I think they would just want to involve me if I wanted to be involved. But I think, certainly, like You know what it's like on the day any kind of news organization, they want an affected parent to speak on it immediately and give an opinion. And I'm just like I saw that there were People that did that. But I just thought, I can't. I like, it's just too big a and too much of a hypothetical thing as well, because it's like it's easy to give an opinion on an experience you've been through, but To talk about a change in a system which hopefully will go one way but might go another. I mean, it's so I don't know.

Mark

Yeah, exactly. I mean, like, um So Heidi Mavi r is one of the guests that I've had on here who's wonderful. And I got an email because I'm on Heidi's mailing list, and there was an email that Was like, I'm going to summarize what the send white paper means. And it's like, oh, wicked. That's great. I still haven't had a chance to read it. I'm still just like, when I want to You know, when I have the capacity to engage in it, that's what I'm going to read because, you know, I love Heidi and I think she has probably got a very interesting take on it.

George

Yeah.

Mark

But for now, I'm just going to have to keep that lid on.

George

Yeah. I think that's it. I think it's a good skill to have to go. I'll put that into my head later on when I'm able to. Like, I think it's good to be able to compartmentalize these things, otherwise, your whole life is just overwhelming, isn't it?

Mark

Yeah, yeah, exactly. And there's other overwhelming shit as well. Like, I'm we're just you know, we're on the brink of World War III. Well, exactly. All that shit's going on. No. And now the government drop a... right really now guys? You're going to do it now? Great. You know, gi just give me Just give me a bit of rest. Can everyone just stop doing stuff for a little bit?

George

Yeah. Can everyone just shut the fuck up for a ten minutes, please?

Mark

Let me get meal time sorted.

George

Yeah, yeah, yeah.

Mark

And then, and then we could talk. Right?

George

Yeah, got it. Yeah.

Mark

So, you know, when you think that you'd start to have a handle on your kids, and you so you kind of do some research, you think, okay, I think I'm starting to get a grip on things. And then you learn about a thing that you hadn't heard about before, it can be like that extra overwhelming of like, oh, it's another thing I have to become a Fucking expert on. PDA was like that with me. I didn't know about PDA. I had no idea what it was. And then I looked at it and it just opened up this whole world of like, oh, that's him.

George

Yeah.

Mark

That's what's going on. Oh, okay. But it's not enough just understanding what it is, you have to then learn all of the strategies.

George

Yeah. Well, that is one that so when my wife first mentioned PDA, she said Maybe our daughters, PDA. Because of the name of that one, I did think to myself, oh, for fuck's sake. Yeah, because that one's very badly named. It does not sound from that one. It feels like that's one that's oh no, that's going to cause a lot of problems in the future. But actually, like you say, when you research these things. You learn how to handle them a bit better.

Mark

Yes, yeah. And it it also becomes second nature. Like the way that I talk to my kids now is very, you know, low demand language. it's it just becomes second nature instead to say come down for dinner which is a demand to saying dinner's on the table which is a statement.

George

Yeah.

Mark

And that is a very different thing for a PDA kid.

George

Yeah.

Mark

And once you click and go, oh, it's just that I mean, it's not just that. There's so much more to do with that. But it just becomes the way that you pair it. It just becomes part of that array of strategies that you You use over time.

George

Yeah.

Mark

I think one of the hardest things in the course of our research is when you think you've got a really good understanding of something. And it's compelling, and it's well presented, and it makes perfect sense to you, and you get it, right? And it answers so many of the questions that you have, and you've used this strategy, and you and it works. then you come across a completely opposite viewpoint. Well, someone like goes, no, you shouldn't do that because of this. Instead, you should do this. And the people arguing it the other way round are equally as passionate and equally as compelling in their presenting their evidence. Yeah, it's really hard to hold those two things together. Do you know what I mean? You start second-guessing what you first thought and go, was I wrong?

George

Oh, yeah, completely. I definitely have this with the kids a lot. These things will happen. But I think a more extreme example of this is I remember when my brother was young. it felt like the best way to support him was to try and get him to fit in more. That that felt like at the time, it was like He's so different, but let's, you know, do everything to make him fit in with every because that felt like the it it it certainly felt like the right thing to do. It felt like the Whereas now that's the opposite of what?

Mark

It is the opposite, isn't it?

George

Yeah, so completely the opposite. But even until me being still an adult, but bef probably before we'd had our kids, but me being an adult, I thought Wow, that was so well handled, and that's exactly what you should have done, and that's that's how to parent a child who is like that. And it's only in the last few years I've had my own kids. I think, God, that is so opposite to what I think now.

Mark

Yeah, yeah, yeah, yeah.

George

But I think that's the thing. I think it's part of this whole thing is allowing yourself to completely flip and think the opposite thing because we're all learning about it together and things that felt like the right thing a few years ago maybe weren't. But maybe the things we're doing now aren't either. And I think it's okay that, you know, in the future we can have our minds changed because, like you you've already said, you're picking locks and you're just trying things. And it's fine to be.

Mark

Yeah, I think it's always useful when you hear a different view to examine who's actually coming up with that. Viewpoint.

George

No, yeah.

Mark

Because it's very different. I think how you handle that is very different. So if some of the if you get conflicting views from someone who has no experience of neurodivergence. That's very easy to go. You know what? You know, you don't know anything.

George

Yeah.

Mark

You don't have to say that. You just go, yeah, thank you. Thanks. And, you know, that's the helpful advice that people try and give you about not mollycoddling your kid or give them. Click around the air, you know, or you know, you need to be firmer with him. That bullshit. Very easy to just go, nope, I definitely know more than you, so I'm going to stick with what I'm doing. Thanks. And you can go bully your own child.

George

Yeah.

Mark

Whereas sometimes you get conflicting views from perceived experts, and this is where it's a bit trickier. Right, because there are some people who have theories and they claim to have the science to back it up, yeah, and they're going, you know, we've got this This whole thing, and here's all the science, and you should listen to this because it's going to provide the magic bullet to help your autistic child. That's really difficult to wade through that sometimes. You know, and you like, I tried CBD gummies. That's going to help your kid. I don't know if it will or not. Genuinely, is that a thing I should look into? I don't know. And Neuroshambles listeners. Even if you think it is, I don't want to open that box right now. So don't write in going, No, you should totally try it. Like, if you want to recommend them for me, I'm all for it. Great. Yeah. But not for the kids at the moment. I get a lot of emails from from people wanting to be guests on Neuroshambles. And typically, it's people that are pitching a book or a course or they're offering to talk about something that is completely outside of my realm of understanding. And my first question is, why are you doing this? Typically, it's because they want to publicize something or advertise something. And I absolutely don't want Nourish animals to be like that. It's not, I don't want it to be like a marketplace. I want it to be. An discussion, an engagement, a chat. And I got one email from someone who is very insistent on coming on, and he's emailed me multiple times. And he wants to appear as a guest to tell me how neurodivergent behavior is linked to gut health, heavy metal toxicity, mold, and hidden infections. I mean, where do you start with that kind of thing? Of, like, I is that a thing?

George

Oh, yeah. I agree. I have messages like this a lot by people going. With such conviction, saying, Yeah, this is a thing. And I think to myself, I mean, what I want is to someone who I trust to go Oh, don't listen to that, it's a load of bollocks. Or to go, no, this is really interesting, actually. There's something in this.

Mark

Yeah, yeah, yeah, yeah.

George

But while there's no one telling me these things, you kind of just think to yourself. I don't know, it could be because there's so much unknown involved, and there's fresh information all the time. I mean, when we spoke to like When we went to get genetic tests and stuff like that, they were kind of going, Yeah, a lot of it's just we don't really know right now, but but we'll keep it all on file, and then in the future we might have some more answers about these things. So you think, well, They don't really know. I don't fairly fucking know. So maybe.

Mark

But then you find yourself in this ridiculous situation of like having to research the researcher. It it's like this this whole cyclical thing where it's just piles and piles of pressure to try and work out what's what.

George

And then you have the pressure as well, as I do a lot of the time, is you think Should I I should should I be relaying this to other people? And what what when I'm trying what if someone asks me about this and I'm trying to explain it and I get the explanation wrong, and then I think Wait, do I think that or do I not think that? I can't think what I think.

Mark

Yeah, yeah, yeah, exactly. I sometimes get emails from people who want to talk about ABA, right? Applied behavioral analysis, which is I don't know if you've heard of it. And I haven't looked too far into it, but I all I know is that it's essentially teaching kids to Not be autistic. Training the kids to stop being so autistic. I know I'm paraphrasing. If there are any ABA practitioners listening. I know I'm paraphrasing, but that's kinda how it feels to me based on my little knowledge of it, is that it feels like putting kids on neurodivergent boot camp to stop them being so overtly autistic. And it's very fundamentally opposed to the way that I see things, which is let them be them. It's not them that needs to change. It's society's perception of them that needs to change. because it's damaging trying to encourage them to mask or trying to teach them conversation skills. They don't want to have a conversation about the weather, and that's a valid opinion. Let them do it.

George

Yeah, and I agree, by the way, I instinctively, stuff like that where it feels like something to make someone be less autistic feels so wrong and so against. Th th that is another example, though, of like for a lot of the time, we're very much like, nope, it's not the problem of autistic people, it's the world that needs to change. And autistic people should be able to be as Free and as expressive, and not play by any of those rules. But then sometimes I think that's all well and good, but the world hasn't changed And we need to get by in this world as well. So there are certain skills that you do need to learn to navigate the world. And then you then conflict again, then, because of that. What do I think again? What do I think? And then it's like, you know.

Mark

Yeah, I think I've got a similar mindset. Like, I feel like, oh, maybe I do need to learn about this so that I know what I'm rejecting. We cannot do that. We don't have the time to do the research of the stuff that we're pretty sure applies to the way that we want to parent our kids. You know, at some point, we have to trust our gut, I think.

George

Yeah.

Mark

Like, what I now understand from piecing together the jigsaw of my kids' profiles. is I understand how neurodiversity presents in each of them. And like I understand why their behaviors are the way they are in certain situations. Broadly, and the way that I parent as a result of those of this understanding broadly works. Like, you know, this is a safe place for them at home. They are authentic. I'm really delighted with the fact they laugh so much and they're just, you know, this is a safe space for them. And that for me is enough at the moment. I don't feel like I need to look into other conflicting theories of how to parent my kids because this Is believe it or not, guys, this is working to the best degree that it can. I think at this point, I'll take this. So I think it's okay to not go down every rabbit hole, I think is the upshot of that. If it smells funny down there, don't go down it.

George

And I think as well, like I mean, I was kind of joking before about having someone by your side to tell you, but I do feel like these days you have you end up with people that you follow online, and it might be other parents or it might be experts who you think, I'm pretty sure we're on the same page about stuff. And I'm so lucky that I have my wife who is more on it with all of these things to me. So I'll sometimes be a bit like, what do we think of this? What are you on this one?

Mark

What is Team Lewis' view on this?

George

And and It'll be explained why. Especially stuff like that, where it's like, oh, you know, a lot of people are suggesting this, but now there's a lot of thinking that maybe this is damaging, or you know what I mean? So it's. I think it's fine to try and find guides where you can because you can't like you said, you can't do everything in your own head, I don't think.

Mark

No, absolutely. And I think for me The most important conflicting views to listen to are people with lived experience. But crucially, people who are autistic.

George

Yeah.

Mark

So some of my favorite Neuroshambles episodes are when my guest is autistic and completely challenges my view of a thing, something that I perceived. And they have to come from a neurofirming approach, which Surprisingly, autistic people do.

George

Yeah.

Mark

Not like, nah, stick them in prison. But it's it's someone who's not trying to squash your kids' neurodiversity You know, they're trying to promote acceptance of it and help me to understand it better. So I've had some fantastic guests who are neurodivergent. Who are advocates, like Pete Warnby and Heidi Maver, and Jess Kane and Danielle Yarta Hall, and they've all said things in conversations I've had that have completely helped me to understand something that my kids can't articulate.

George

Yeah.

Mark

And I'm like, oh, oh, that's why Jay does that. I'd never thought of that before. Yeah. I get a lot of those in those particular episodes. And there was an episode I recorded with Kieran Rose recently. towards the end of last year, which genuinely hurt my brain. I couldn't bring myself to edit it for a month because I had to think about what he said and how I would even edit that together. It was like, we shouldn't diagnose our kids And I was like, are you shitting me? I've spent seven years fucking fighting for diagnoses for my kids.

George

You know, that's a great example of you hearing something like, oh, no, no, no, I thought you were on my side. I thought we were all on the same.

Mark

Put that back in the box. I'm not ready for that. That's going to just. But file it next to the send white paper. I'll look at that another time. And that was one of the ones why it took me so long to edit the thing. And then he explained it to me and why he thought that. And it made sense. And I found myself agreeing with him by the end of going, oh, yeah, that makes perfect sense. Now that's not to say that I'm now going to start returning my kid's diagnosis It's not like rejecting an OBE, but it made me think about it differently. But to kind of summarise, if I can summarise, he's just like, they don't fit into one diagnosis. You know, a diagnosis for autism doesn't explain who they are. A diagnosis for ADHD and autism doesn't explain who they are. I've talked to you about Otto and Jay having completely different profiles and India having completely different profiles, but they have exactly the same diagnosis. So it's like, what di what good has diagnosis done for you? Because it doesn't explain who they are. And I was like, okay, but it explains to other people who don't know them who they are. And then he was like, But yeah, that's where you need to stop talking about their diagnosis. And start talking about their needs. Which is Jay, and he needs this, this, this, and this. This is Otto, and he needs this. Now, that is more accurate.

George

But have we got a world that can that can process those individual things? I think it's that's what we noticed since getting a diagnosis with the kids. You can just say, say they've got a new teacher or something. You just go, This kid is Autistic and has ADHD, and then immediately they think Oh, so some of these behaviors, that'll be the reason for them then. So we, you know, they're not. Yeah, it gives more context. Yeah, it gives it immediate at least throws you in the right ballpark for how to deal with this child, and you'll work out more. But at least it puts you in the right area.

Mark

Yeah. So where we got to in that conversation I had with Kieran was exactly that. It's like, for now, it's the best we've got, but it's not where it should be. Because actually, we need to be in a place societally where you know you just go, these are what I need, and that's that's enough.

George

Yeah.

Mark

But as I say, that is like a whole mindset shift that I wasn't prepared for when I had that conversation. And it's like, oh, now I need to hold reevaluate everything in my world. And it is um but it's important to keep thinking and keep assessing, particularly from people who have that lived experience and who can articulate themselves. But there's always going to be a feeling, and I think we need to sit with that and live with that, that we will never know enough, ever.

George

Yeah.

Mark

Never happen. So all we can do is keep picking up bits and doing what we do and applying it where we can and rejecting it when it's nonsense.

SECTION INTRO

It's not all rubbish.

Mark

Okay, we're going to look at the positives now because there are lots of positives of doing the research, as we've kind of said. You know, there is an increasing amount of information available now. People are more aware of neurodiversity than even when I first started. There seems to be more and more written about it, and more and more people saying amazing stuff. On the socials, writing books, people doing talks and podcasts. We're in a much better place now than we have been five years ago. And I would imagine that that's going to keep progressing. That conversation will keep happening, which is great.

George

Yeah.

Mark

Absolutely. I think another positive really is that through all of your research, as a parent, we gain confidence in understanding our kids' needs. Because you do, you do start to piece it all together a little bit and feel like you're more able to advocate for them.

George

Yeah.

Mark

And through those battles that you were talking about, right? The ones that we fought. We're a bit more battle hardened, I guess. So I think people stop fucking with you a bit more. Yeah. I don't know if I give off that. That air sometimes.

George

Well, yeah, you've just got more confidence with it. And I think it's the point because there are so many points that you go through where certainly I've had basically years of thinking. I feel like I'm right, but I feel like that person thinks I'm wrong. And I think my daughter is this, but I'm not sure. I want to trust my instincts, but then they seem to think that maybe she's not. And then, and then eventually, when you get proved your instincts are right time and time again.

Mark

Yes, yes.

George

And each time they've been right, you think, no, my instincts are right. And they're gonna and next time you're a bit more confident in your instincts because I don't know. You learn to trust yourself that you know your child.

Mark

Yeah. Absolutely. Even when experts, people who should know better, are saying no, and you're like, no, I believe this. And then, as you say, you get proven right. It's like. I know more than experts. And that's an interesting feeling.

George

Yeah, no, that's it. That's yeah, at points that's It's disheartening and emboldening at the same time.

Mark

Yes. What also happens over time is that you build better relationships with the professionals SENCOs, for example, you know, we now have a wonderful relationship with our the SENCO at my kids' primary school because They trust us and they know that we're coming from the right place. And I think they know we've done the research. So that's worked really, really well.

George

Yeah, same.

Mark

But it is, yeah, it's really beneficial.

SECTION INTRO

Neurodiversity champions.

Mark

Okay, neurodiversity champions. Now, these are the people or organizations who are doing some wonderful things in the world of neurodiversity. Have you got any neurodiversity champions for us for this one, George?

George

The charity that I w work with, Autistica, that we're I'm running the marathon from this year, so I met with like Team Autistica last week, which is all of the people who are running for them. And basically, what they are, I mean, obviously, there's a lot of autism charities out there, but they are all about research and they're all about Just discovering new things about autism, which, like we're saying before, is there's so much to be discovered, and it's such a valuable thing. Also, at a time when there's so much misinformation out there and a lot of people want to I mean, we've not even touched on this, but drag autism into some kind of culture war and it's become something else and people have different agendas for spreading misinformation about autism. I think it's just so good to have um people who are doing proper research for good reasons. So I think that's They would be champion.

Mark

Absolutely. I'll put a link to those in the show notes.

George

Oh, yeah, brilliant. And another couple of people who are just personally have. I would recommend our friends of mine, who are Fern Brady and Pierre Novellie, who have both written such good books on first-hand experience of living as autistic.

Mark

I've mentioned Pierre Novellie's book on here because I listened to the audio book and it was brilliant. Like talking about listening to a neurodivergence experience of being neurodivergent and helping you shift that view. That book was brilliant. Pierre Novellie, which is called Why Can't I Just Enjoy Things?

George

Correct, yeah.

Mark

But Fern Brady's I have not read, so tell me about that one.

George

Yes, it's called Strong Female Character, and it's kind of a an autobiography really, but it's just amazing at giving you a first hand experience of life for an autistic girl, but probably They're stories that haven't been told as much over the years. So it a lot of it feels so fresh to read. And it's, I think, over the past few years. I've been especially interested in trying to read about the female experience of autism because it can be so different and it can present in such different ways. So again, and she's just so hilarious and so knows her own mind so well. And I think it's just it's great to see that kind of confidence in who someone is when they are probably quite different to a lot of other people.

Mark

Yeah, no, actually that's brilliant. I will I will make sure that I Read that one. Oh, I'm going to listen to it. I don't have a chance to read, as we've already established, but I will listen to the audio book, that's for sure. Awesome. Thank you for that.

SECTION INTRO

Tiny Epic Wins.

Mark

Okay, tiny epic wins. Now I always love looking at tiny epic wins. These are the things that in a neurotypical family would not be considered a big deal, but in a neurodivergent family they are epic wins worth shouting from the rooftops. So have you got any for us, George?

George

At the moment, I mean, it sounds pretty low bar list, but if we have a morning where all the beds are dry when they wake up and the kids going to school without tears, then it's amazing. And it feels so and it and it's just because they're finding I mean, we've been back a little bit after the school, but after every break from school, both kids find it so difficult to go back and it manifests in such different Ways, but it means at the moment it feels like you kind of fear in the mornings because it's it's like, oh God, how's it gonna be tomorrow? Whereas actually, like this morning I was Yeah, I was anxious about it because I thought I was going to be a difficult one, and they've both got their own worries, and you're worried about how you're going to handle it, and how you know Sometimes you you'll put a misstep wrong and it'll result in the whole thing falling down and my son is it's eggshells, isn't it? It just feels like like this morning it was I mean, all the beds weren't dry, but that's fine. We've sort of we're so much more relaxed about that now.

Mark

You drank a lot last night, George. It's not your fault, man.

George

We just uh But yeah, with that, we're just like, okay, cool, bedding in the wash, that's it. We'll just sort of expect that, that's fine. And then the kids actually went in pretty well. And then you feel like you Walking on air after that.

Mark

You skip home, don't you? Yeah, it's amazing when that happens. And also, it's spring's a day and that makes a difference. Like, you know, it's a kind of nice day. But yes, it it's that moment when you first get up. You're trying to work out what you're going to be greeted with. And then, if they're okay, if they seem to be on board with it. You're just like, don't mention it. Don't say a word. Don't put a foot wrong. Let's just ride this train.

George

And if that doesn't feel like as well, I realize that feels more like Not necessarily a win, it's just not a loss. But I feel like if that that then has a knock-on effect, then it means that, like, after school today you see things. I think you said something lovely before where you're like about how your kids laugh a lot. So that you know that things are good 'cause they laugh a lot. And I know that that's that's so true and such a nice way of looking at it. Like I saw my kids earlier, and my wife was playing with the dolls with them and doing a funny voice. And my son is just experiencing such joy and he's laughing so much he can't get make a sound. And then or if I'll see my daughter like she was doing earlier. a song that she likes, like Pink Pony Club was playing and she's dancing and moving in the way that she likes to move and stuff. And it just makes oh, she's happy and she's being her so yeah even though this is her right she's being awkward and those things in the same way that the house of cards can come down and a knock on can lead to a worse thing In the same way, one good thing can lead to a a load of more good things throughout the day.

Mark

Yeah, yeah. That's great. Thank you. That's a That's a huge win. Dry bed and dry eyes in the morning. Win.

SECTION INTRO

What the flip!

Mark

Okay, the what the flip moments now. I don't know if you've heard of what the flip moments before, George, but these these are the moments that your kids will do or say something that completely flummoxes you as a parent of a neurodivergent child that you there is no answer for. You just have to walk on. Um, I've got a few what the flip moments, as always. I've got one from all of mine, actually, if you'll indulge me. Yeah, my first what the flip moment was from Jay the other day, where he went, If I could get rid of three things. It would be number one, Kim Jong-un, number two, Donald Trump. And number three, lines of symmetry.

George

I mean, I thought we'd established a pattern.

Mark

I mean, they're all tyrannical in their own way, aren't they? Yeah, he found, yeah, we had a massive argument about lines of symmetry. Because and again, it was it was really interesting to see how he perceived it because he was wrong, and I showed him why he was wrong, and then he completely helped me see why he'd come to the conclusion that he had, which then meant he was right.

George

Right.

Mark

Which is what I mean.

George

Yeah.

Mark

Yeah. So he we he had a ma we had a massive argument about lines of symmetry and it made his list.

George

And he now sees them at the same level as a dictator.

Mark

Yeah, exactly. Another one is I was in the kitchen the other day and India gave a yelp of pain from next door. I didn't know what was going on, so I asked if she was alright, and she shouted back, I was only joking. You are such a gullible little man.

George

Oh, god!

Mark

She's eight, huh? Yeah, so disrespectful. So India I mean, I've actually done a whole episode about India not admitting that she's in pain for anything. So this is very kind of typical of her reaction to that kind of thing. It was just quite the phrasing I thought was just wonderful. And then the final one was Otto had made a fidget toy. out of a balloon and you put a load of beads in it and you tie it up and then you suck all the air out.

George

Yeah.

Mark

And he's made a fidget toy and he's very proud of it. And so he showed his tutor and he went, look at my balloon. And the tutor went, that's not a balloon anymore. It's a fidget toy. And Otta just looked at him and went, Look, if I filled daddy with whipped cream, he'd still be daddy.

George

What a wonderful example as well.

Mark

I mean, it was really quick. I overheard it. It was like, dude, that was so quick. But yeah, it's just Very again, just looking at that autistic perspective of something is just so laser-guided, so unique. It was wonderful.

George

It's amazing. It's uh, it's funny the thing that you said about your daughter there, about the screen. We have that, and that's something that you don't realize you've adjusted to until you kind of look at it objectively. But the way our kids call, you never know if it's like an emergency or something so inconsequential. There's something our son does, whereas he plays on his Nintendo Switch. And he has to tell us every time which two clubs are playing and who he's playing for. And it's every single time. And at first, when he first started doing it, we were like, Okay, we don't need to know, we don't need to know.

Mark

No

George

We just accept it. But it's so. So if we're not in the room, he'll go, Mommy, Mommy, Daddy, Daddy. And we'll be like, what is it? What is it? What is it? And he goes I'm playing Coventry City against Stockport County and I'm playing for Stockport County. I'm black. Okay.

Mark

I thought it was a bear.

George

Yeah. But thanks. Good to know, fun.

Mark

Yeah.

George

But like that's something that we don't go It's not an emergency. Why he said it? We just go, okay, yeah. Okay.

Mark

I mean, it is to him.

George

Yeah.

Mark

He's got to get it out. It's a burning desire.

George

Yeah.

Mark

I love it. Okay, so that is it for this particular episode of Neuroshambles. Firstly, George, thank you so much. For coming on and being a guest, it was worth the wait, wasn't it?

George

It was, yeah, for me, anyway. It was for you because, yeah, thank you, thank you for being patient with me and uh No, lovely to chat to you. So nice to chat to you.

Mark

Good, good. Thank you also to all of you NeuroShambles listeners out there. For listening to this, but also for commenting on the socials and recommending it to other people and writing reviews and sending me emails. If you want to contact me about anything to do with Neuroshambles in terms of any other guest recommendations or topic suggestions. Or, if you want to send me any tiny epic wins or what the flip moments or neurodiversity champions, please feel free. I'm always grateful to hear from you. You can also check out the socials on Facebook, Instagram, or TikTok. But I think that's it for now. All that remains for me to say is have a nice life!