Tackling Ignorance - Part 1 | Jo Matthews

EPISODE TRANSCRIPT

Mark

Hello and welcome to episode 39 of Neuroshambles. As always, it's a treat to have you aboard, Neuroshamblers, but in particular for this episode, because so many of you have contributed to this week's Topic of the Week. I'm going to be getting into that with an old Neuroshambles fan favorite, and we're also going to be talking about Neurodiversity Champions, tiny epic wins, and some cracking what the flip moments. So what are we waiting for? Let's get stuck in.

SECTION INTRO

Meet the guest.

Mark

This week's he's the return of the first guest I ever had on Neuroshambles, so I'm genuinely excited. She initially encountered my neurochaotic family through a local group she ran for families of neurodivergent kids, and I think we've kept her close to our hearts ever since. It's no exaggeration to say that her approach to parenting autistic and ADHD kids completely transformed the way that both Tam and I parent ours. through this radical acceptance of their unique personalities and a very healthy dose of not giving a shit what anyone else thinks. This is starting to sound a bit like a eulogy. Don't worry, she's very much alive and I'm overjoyed to be able to welcome her back to the podcast. It is Jo Matthews.

Jo

How are you doing, Jo? Hello, Mark. I am delighted. To be here.

Mark

Good.

Jo

Not sure that my parenting style is something anyone should emulate, but hey, we get through, don't we?

Mark

Exactly, but that's the point. We're still here, right? And. there's an approach that you have which was which we didn't encounter in the early days because we were you know everything that we were doing made us think that we were wrong. So seeing you and your approach to other neurodivergent kids and going, oh, there's a different way of doing this. And you don't have to be trying to force them into neurotypicality. You can just embrace them for who they are. And it's been hugely empowering for us and hugely positive.

Jo

Thank you. Thank you.

Mark

Thank you. Um, so uh for those Neuroshamblers who haven't heard uh Jo's episodes before and don't know your setup, it's useful to know what you're dealing with there in terms of neurodivergency. So talk us through it, Jo.

Jo

I am the extraordinarily proud parent of two autistic young adults. George is now twenty one, Dottie is now eighteen, which just I can't even get my head round when that happened or how that happened. Um, Phil, their dad and I have an approach of radical acceptance. We have tried to just embrace who they are and celebrate that. with mixed mixed results. We're doing okay, we're through it. And you know, they've reached adulthood, happy and for the most part thriving. So yeah. It's all good here.

Mark

Wonderful. Thank you for that. Let's crack on with this topic because there's lots and lots to cover.

Jo

What's the topic of the week?

Mark

So this week's topic is one that I've been wanting to do for ages, and that is the subject of tackling ignorance. Because, as parents of neurodivergent kids, we are, I think it's fair to say, no strangers to the interjections of people who are entirely unqualified to give us advice on our unique circumstances. But. Nevertheless, feel entitled to stick their or in anyway. So for this episode, I've taken a slightly different approach. in that I I posted a video on the socials asking fellow NeuroShamblers to tell me some of the ignorant comments that they'd been on the receiving end of. And what I was expecting was maybe a handful of replies similar to what I'd already got in mind. What I got was just this glorious outpouring of people telling me all of the stupid shit that ignorant people Of senting them that has got right up their nose, and it was, it felt cathartic, not only sort of reading them, but just feeling the release of other people being able to get it off their chest as well. So what we're going to do is we're going to go through pretty much all of them to try and dissect everyone in turn and, where possible, suggest appropriate responses should any of us encounter said nonsense in the future. Are you up for this, Jo?

Jo

Oh, I am so up for this.

Mark

Good, good. Now, initially, this was going to be a standalone episode, but I think just the sheer quantity of responses I got and You know, I want to tackle each of them in turn properly. I think we're going to make it a two-parter. So, this will be the first part, and then we'll tackle more in a second episode. So strapping. The first one, the first one, 'cause a lot of these that have come through, uh multiple people suggest the same thing. But one that I get a lot of, and I've heard personally and I'm sure you have, is that It's just a label. So the ones I got were ADHD is the latest label that everyone seems to be getting. Autism is just a label. And everybody has a label these days. So, you know, similar vibe, but equally as infuriating. Do you get that, Jo? Have you had that?

Jo

Oh my God, yeah. And still do, still do, and from people who should know better. Not everything needs a label and it's not a label, it's a shitting diagnosis.

Mark

Yeah, that is that's the thing, isn't it? Like it's it's a diagnosis. I mean that's that's my go-to. You know, my go-to response is, it's not a label, it's a diagnosis. And I think to a degree, people assume it's a label because it's an invisible disability. If you like, it's not, you know, they're not physically disabled, they can't see it on the outside. So, for some reason, people are sceptical of it, which is insane because. There are lots of things you can be diagnosed that are not visible. Like, you know, heaven help me if these people tell me they've been diagnosed with cancer. 'Cause I'd be I would be less than sympathetic.

Jo

Have they thought about yoga or meditation for that?

Mark

It's just a label, Sheila.

Jo

Get over it. Yeah, Sheila. Sort yourself out. But I'm like, oh, it is exhausting. I think it stems from autistic people are finally being recognised and diagnosed rather than having to go through life struggling and not understanding why this is all so hard. Um but the ignorant, the Sheilas who walk among us see that as, oh, well, everyone's autistic now. It's the you know Yes. They're all getting that label. Um and it's

Mark

Just bullshit. Well, it is, but they just see the rise in diagnoses, right?

Jo

And not just the rise in people getting diagnosed, but also.

Mark

The fact that people are much more open about it. People are talking about it. It's on the socials and which is phenomenal. It's hugely empowering to um, to neurodivergence, to be able to see other people who are experiencing similar issues and being almost proud and defiant with their diagnosis. And I think long may that continue, that people normalize diagnosis and normalize talking about their neurotype.

Jo

Yes. And so this might be the moment. This is the moment, Mark. I know you were shocked when I said I'd done research because my general approach is just to wing everything. I stumbled across Rube Waddell. So, this idea that autism didn't exist in my day to all these people. Let me tell you about Rube. Rubaudell was born in 1876. Sorry, I've got the giggles because the man's a legend. His biographer later described him as a decidedly different.

Mark

sort of child. Oh, I like that.

Jo

Decidedly different. He was d so little Rube's decidedly different. At the age of three, Rube wandered over to a local fire station and stayed there for several days.

Mark

I mean, at this point, you've got to question the parenting.

Jo

I mean or they just accepted, listen, my man likes fire trucks, leave him. So little Rube grows up and he becomes Exceptionally good at baseball.

Mark

Right.

Jo

But I've got to read you this from his Wikipedia page because it had me in stitches. Okay, he was notably unpredictable.

Mark

Okay, yep.

Jo

Early in his career, he once left in the middle of the game to go fishing. He also had a long-standing fascination with fire trucks and ran off the field. to chase them during games on multiple occasions.

Mark

I mean, if that doesn't scream special interest, I don't know what does.

Jo

He would disappear for months at a time during the off season and it was not known.

Mark

where he worked until it was until it was did they check the fire station? Because that'd be my go-to.

Jo

Presumably. But No one could have guessed where Rube actually was because he was wrestling alligators in a circus.

Mark

This guy's unbelievable. I've never heard of him before. But what really strikes me here is. He's still getting picked for the team. He's good at baseball. They're putting up with his antics.

Jo

He was so good. um he was easily distracted by opposing fans who held up puppies which caused him to run over and play with them. And shiny objects which seem to put him in a trance.

Mark

This is unbelievable. And that was in 1870.

Jo

He was born in 1876.

Mark

Right.

Jo

And do you know the really, really sad thing? Because I then became just quite fascinated with this guy. Rube developed a dependency on alcohol because of course he fucking did because he was self medicated.

Mark

Yeah. Yeah.

Jo

I in a world that, you know, we don't have these labels, we don't have and he died, I think he was thirty.

Mark

When he died.

Jo

So, Rube for me is a shining example of, of course, there have always been autistic people. God bless him. And there must have been so many Rube out there.

Mark

Yeah, well they are. I mean, th you know, the if you look at historically, people are you know, there are there are very credible theories that a lot of inc incredibly gifted humans when neurodivergent. They're the same like Da Vinci. I mean, you look at the shit he did. You know, he wrote, he invented his own style of writing so people couldn't eat his ideas.

Jo

And I mean we've all got a strange uncle with a stamp collection.

Mark

I mean I've got no da Vinci's in the family.

Jo

But Gene skipped our bloodline too.

Mark

But there's I mean if you look at it historically, yeah, there were, as you say, loads of Rubes existed and have always existed, and they are, you know, unique and different. But there wasn't the process of diagnosis back in those days, there wasn't the understanding of autism. They were just described, and I've heard my parents describe people like this as just a bit eccentric or just a bit odd. Yeah, I don't think there was a necessarily a stigma attached to it, but they weren't understood and they were uh very definitively seen as outside of the norm.

Jo

Yes. And will have gone through life internalising that struggle and internalising that idea that somehow they are defective. And yeah, I don't want that for my kids, I don't want that for any other kids.

Mark

You wonder whether Rube was actually masking. as well.

Jo

Can you imagine if he'd done that? Anything could have happened.

Mark

So, you know, just to bring it back to the autism is not just a label, it is a diagnosis. It's a diagnosis of something that has always existed. It is probably much more prevalent than we realize, and we're only just starting to understand. and get to grips with. And that's why a diagnosis has gone through the roof. And I can see from the point of view of the person complaining about it, 'cause they don't get it either. It's because it's seen as a new thing. It's just more visible. And and people are suspicious of it because because it's probably quite shocking to a lot of people how many people are neurodivergent.

Jo

Yes. And what that might mean for everyone as a society if we are starting to say, well No, it's not okay to carry on with the status quo.

Mark

Yes.

Jo

We might need things to change because there is a large group of people at the moment who are marginalized through neurotypical

Mark

Yeah, and they always have been. And I, you know, I dread to think what's how damaging that's been to people you know, I mean, I speak to guests of mine who say that that it the a late diagnose that took them a long time and it's really damaged them. You know, put my conversation with Pete Warnby was really kind of interesting because he said, I'm now at a point where I can unmask. I don't know if I'll ever be able to fully unmask to the point that I know who I am because I've just been through decades and decades of masking. So the earlier that we can get this diagnosis and help people understand the way their brain works, the way their profile works and to advocate for themselves and to understand a little bit more about themselves, I think the better.

Jo

Absolutely. In terms of mental health, self-esteem, everything that allows. Adult humans to live a successful, productive, happy life has to start with accepting who you are and celebrating who you are.

Mark

Yeah. As one of our listeners pointed out in the responses on the socials. said, like, our kids are already being labeled. You know, they're already being labelled lazy, easily distracted, naughty, careless, weird, disorganized, never listens. They're all labels. And I know what label I'd prefer them to have. Yeah, which is neurodivergent, neuroexceptional. Now, a lot of the responses that I had all fall under one sort of umbrella category, which is people Looking at neurodivergent kids and the way that they present and blaming the parents for it. And I was sort of trying to group them, and so many of them fell under this category. So, I'm going to go through some of them in turn. And I'll say them verbatim what people said to me on the social, so we can unpick it, right? One of them was: stop mollycoddling your child and get them to learn how to do what they need to in order to survive. My initial response is, you know what they need to do to survive? They need to steer clear of people like you, you fucking psycho. What do you mean? Stop mollycoddling them.

Jo

And what?

Mark

Where do you start?

Jo

Where do you even get that? There's this idea, isn't there? And we hear it a lot in schools. They need to develop resilience. They need to become more resilient. And these children and young people are some of the most resilient people I've ever seen in my life. A hundred percent. Yeah. Um and the The hard of understanding among us just don't see that and just see that, oh, well, you know, you should. Force them even more to try and fit into a frankly hostile world. And yeah, I'm calling bullshit on that one.

Mark

Yeah, yeah, this resilience thing is the one that keeps coming up. Because it is. Like the the amount of resilience it takes for my kids just to leave the fucking house is like unfathomable to people who don't understand neurodivergency. And haven't done the research and don't listen. Because there are people that you tell this and they still don't really get it. But, you know, to go into school, to even be in school for Otto in particular. Is incredibly overwhelmed by that. And it was, you know, incredibly overwhelming for Jay and quite damaging for Jay. And just to to be in that environment, the amount that it takes to, you know, to mask or to try and self-regulate without standing out, you know, there are so many things that they're having to go through simply to be in the classroom.

Jo

I wonder if we've I've hit on something here. I've had an idea. You know those air horns that make the really loud noise? I'm just saying maybe parents should start just carrying one of those and when they're told their child should be more Resilient, or they should stop mollycoddling their child. They just sound that in the person's ear and say you just need to develop a resilience to this.

Mark

I love it. Yeah, that is that would really illustrate your point.

Jo

Yeah. Beautifully.

Mark

And draw attention. It's a bullshit foghorn, right?

Jo

Maybe it could say bullshit.

Mark

Sorry, you're just going to need to get used to it. Yeah. Yeah, mollycoddling as well. This is, you know, there's a similar vein of a lot of the things that people said. It was stop mollycoddling your child. Or another one is tough love. They just need some tough love. um or they need more discipline. This is the the theory or the understanding that they're not behaving the way you want them to behave. So Like, let's just beat it out of them. I'm sure you can beat autism out of them, right? If you had a big enough stick, Mark, it's got to be worth the go, hasn't it? Obviously. my parenting style has changed since I've understood my kids' neurotypes and learned a bit more about it. Because I think initially I was a bit more sort of like, this is what I want you to do and you're going to do it. I mean, I was never ever going to be on the lines of beating them. It's not it's not my vibe. But I probably was on that, you know, I am the grown-up, and this is what I say, and you should do that. But you learn all of the stuff around that, of why they're not able to do that. You know, and it always comes back to this, that you're setting expectations that they're not able to meet. And the reasons they're not able to meet it is not because of defiance. It's not because they're deliberately being dickheads. It's because they're not able to meet them for a myriad of reasons that you need to unpick because everyone's profile is different. And then reset your expectations and reframe your expectations based on what they are able to achieve.

Jo

Yes. I mean, obviously, my two are on occasion being dickheads. I mean, they can be absolute dickheads. But I mean, we've had recently a a sort of someone who should have known better said about Doc, Well, you give in to her too easily. Oh, that's a Another one we got because she and what had happened was she'd become though she'd become overwhelmed and we needed to leave. We needed to just And as her parents, we recognize when she's reached that point of okay, we just need to get you out now and go home and decompress. But it's this idea that somehow I don't know, we should be tougher, we should be more in charge, in charge of the trend.

Mark

But it's also that there's the implication there that they're wrong. You know, that the good kids are wrong to be behaving the way they are, you know, and it's a very parent-led decision making process of like, this is how you're supposed to behave and this is how you're supposed to be. And if you're not being like this, then it is my job as a parent to teach you how to behave like this. And that is very different than the way that I parent and the way that I now see my kids. All behavior is communication. We have that a lot, right? You know, they're communicating that they're not able to. to cope.

Jo

So shouting at them, beating them, like you know, refusing to mollycoddle them is just and it comes back to because the disability is hidden So they would be horrified if you said to a child in a wheelchair, Well, you just need to try harder to walk. I know you can do it if you try. Yeah, get up the stairs. I'm the parent. It just you wouldn't dream of it. It would be, it would be child abuse. So, yeah, this notion that somehow, I don't know, we should tell our neurodivergent kids, well, you just need to try harder, you can't leave, you must. sort of tolerate this situation. Again, yeah, the bullshit foghorn is sounding.

Mark

I want a bullshit foghorn I mean, 'cause that kind of comment as well, that you let them win too much. Like, first, it's weirdly combative as well, because it's like a a battle of wills, right, between you and your child and they're just being willful and you need to double down. And withhold privileges or whatever. Do you know what I mean? Punish them until they get in line. A comment like that is not only criticizing your parenting, it's criticizing the child as well. Yes. It's like, what kind of How d I just worry for how these people view the world. That everything is, you know, is a a battle of wills or everything is a win or lose thing. Instead of looking at it collaboratively and going, Well, you're obviously not able to do what I'm hoping you can, so let's look at it. Why not?

Jo

Let's collaborate, right? But yeah, that notion of win or lose and that parenting as a battle and children as a an opponent is just

Mark

Another one that you get is can't you just make him do that as well? That can make I mean, firstly, have you met my cheer? Children, PDA is like you meet one PDA child who you'll soon realize: no, no, no, you cannot just make them do it. Yeah, there is no make them. And also, do you think we haven't tried that? Do you genuinely um it doesn't work. Well, I've tried for a long time and it absolutely led to uh Breakdown of a relationship with my child early on. Me and Jay were logger loggerheads all the time because I was trying to make him do stuff. And it was only when I educated myself on his neurotype and Different strategies that I realized that, all right, let's do this in a different way. And I think all of this is couch, this sort of you know, it's bad parenting, they need more discipline, tough love, you know, is there's an implication that we're not doing it because we're being lazy.

Jo

Yes.

Mark

Right. And that is deeply frustrating because as we know, it is the opposite of lazy. It is so much harder to talk to your kids and help to understand where they're coming from. a lot of the times when they aren't able able to articulate that, and to be dynamic in your approach and to be flexible in your approach. Rather than just going, I'm pointing at this thing I want you to do, and I'm going to keep shouting and pointing at it until you do it. That's far lazier

Jo

You will obey. You will obey. And I think maybe that's what people don't see. They don't see. Well, firstly, they don't see what will happen if I, you know, if I do start locking horns and Laying down the law in your front room, grandma, all hell's gonna break loose, and none of us want that. So, let me just, you know, let me just deal with this the way that it works.

Mark

Yes.

Jo

And they don't see the thoughts and the care and the understanding that that goes into parenting, particularly PDA kids. And oh, they're just tits, aren't they people?

Mark

I just this is you know, that kind of comment makes me worry about their relationship with their presumably neurotypical kids as well. Yeah, because Like what is what sort of relationship is that setting up for your own kids that that you're not being collaborative or open with them? Um, and these kids, these neurotypical kids, probably would respond just as well as our neurodivergent kids to that approach. It's a very quite an old-fashioned approach, I think, of just going, this is what you're going to do, and I'm going to, you know, I'm going to force that through. How maybe that's the response you say to them. You know, when they blame your parenting, going, Look, I'm it's not my parenting that I worry about. It's yours.

Jo

Good, I like that. What, yes.

Mark

Because if you're insisting that your kids do what you want them to do, how close do you think you're going to be with your kids when they're finally free of you, you tyrant.

Jo

I don't know if we can call people.

Mark

Oh, why not? They call us all kinds of shit.

Jo

Why not?

Mark

Monster? Can we call them a monster?

Jo

Monster. All right, monster is acceptable.

Mark

Oh. Another one I've someone sent in, which is, wow, really. I think I've heard a variation of this before is if they won't go to school, you should make their home life more unpleasant. Right. Absolutely insane.

Jo

You heard that. Oh, because they're so enjoyable at home.

Mark

Like, what what are you suggesting? Let's put broken glass in their bed. Let's release a tiger into the living room so they'd be glad to go to school.

Jo

I know. And again, it's this sense that they're not going to school because we are somehow enabling that. We are somehow. Again, mollycoddling, allowing our child to do whatever the flip they want. And oh my god, we're not.

Mark

Yeah, and you know, goes back to the theory which is covered in The Explosive Child, which I have read and absorbed a lot, which is that all kids want to do well. They want to go into school if they can. You know, the reason they're not going into school isn't just because it's really comfortable at home. And that it's less comfortable, it's because they are massively overwhelmed. They're very often traumatized by the experience of going to school. So, to be honest, if I did have a tiger running loose in The house. Jay would still probably take his chance.

Jo

If you're not a young, I'm going to have a go with a tiger.

Mark

Yeah. Because it's a similar level of dysregulation, right?

Jo

It's the

Mark

You know, for a lot of our kids who struggle to go to school, it's because of their nervous system being massively triggered by what they face when they go in there. And obviously, it might not be you know, akin to a tiger, but they're probably feeling something as extreme as that when their nervous system, particularly PDA kids, is just triggered into that overdrive. Yeah.

Jo

And it's again, it's interesting, isn't it? This sort of we live in a culture, certainly in the education system, of parent blaming So why is the default setting that we should make home less appealing? Why is it not that they should make school more appealing?

Mark

Another comment I had from someone was like, A neighbor called my parenting wishy-washy.

Jo

So what does that even mean?

Mark

I'm assuming that it's directed at someone who is pursuing a low demand parenting approach because, crucially, it works for them. You know, that's not the init that's not how you start doing it initially. I don't think. When a toddler is trying to poke a knitting needle into a plug socket. You know, that's not how you start parenting.

Jo

You don't start with the Okay, do you think that's a good idea?

Mark

No, no, no.

Jo

You keep them alive. Yeah, that's the starting point.

Mark

But um this assumption that low demand parenting is seen as being wishy-washy because again, these people have presumably been brought up in a different way and they ha they have their approach which they think works, which is a more didactic, more autocratic, um, you know, disciplinary approach to it. And you get that a lot, isn't it? Like uh people saying, Oh, you're too permissive

Jo

Yes.

Mark

You give in.

Jo

Yeah, you give in.

Mark

And, you know, wishy-washy is so derogatory as well. Like, you don't think about it, that you're just sort of just letting him get away with shit.

Jo

I have so many follow-up questions that if the listener hears this, please, just because I have so many questions. The main ones being what the flip do they mean wishy-washy? Sorry, watch. And also, how in God's name is it any of a neighbour's business how you choose to parent your child?

Mark

Yeah, yeah.

Jo

Even if you were the worst parent in the world, which I'm fairly certain you're not, how's it the neighbours' business? Oh, Mark.

Mark

I think typically these comments come from an older generation

Jo

Yes.

Mark

I'm making an assumption there, but I think the word wishy-washy seems to be from a pretty old generation. And these are people that don't have much.

Jo

Else to do, right? Well, why don't you hop over the fucking fence and do it better then?

Mark

Because well, you do get you do get that though, sometimes you do get people that think that they can do it better. That's, oh, you know, give me a weekend with them and I'll sort them out. That kind of shit. Like, I can think of nothing worse, you know, for my kids than to give you a moment alone with them.

Jo

Yeah.

Mark

That's never going to happen, dude.

Jo

Although, are you not quite tempted just to see the person who's made this pig ignorant? Comment and just very quickly realize that they've made a terrible, terrible mistake.

Mark

They will break before my kids break. Imagine just like them seeing him running them out of the house going, Oh, what else wrong? Another one we get is children need boundaries. I had this from a number of people. They just need boundaries. Again, it's a criticism of what is perceived as lax parenting, because obviously the boundaries that they're talking about are your boundaries that you're setting. Not their own boundaries, you know, which is, I think, what we're more mindful of as parents of neurodivergence and mindful parents, that they are, they have boundaries. They're communicating their boundaries.

Jo

Yeah.

Mark

Might not be in a way that you want.

Jo

But maybe. And I think also, because we've touched on genital parenting, it's not. That there are no boundaries.

Mark

Yes, yeah, yeah.

Jo

I don't know. What I always say to parents is: right, you have to pick your battles and then Have a good look at the battles you've picked and put at least half of them down because you've picked too many.

Mark

Yeah, yeah, yeah, yeah.

Jo

So so for me, in clubs I run and at home, the very Hard boundaries are around safety. I can't and won't let you stick the knitting needle in the socket. But everything else does it matter?

Mark

Yeah, I mean, I think I remember a comment that you said about swearing. And the bounty around swearing was that, you know, like if you want to swear, to say, like, this is really fucking hard, or I drop the fucking pan again, or whatever it was. That's okay, but you don't swear about someone. You don't say you're a stupid fucking person.

Jo

You don't swear about someone. Yeah.

Mark

Which seems That's fine because there's there's other things at play. If you're if you're putting in that boundary because you're offended by the language, then that's a battle you need to let go of.

Jo

Let me tell you.

Mark

Go on then.

Jo

Oh, I'm having one of those deep and lasting shame moments. Okay, so last week I took a group of 18 kids, all autistic, between 10 and I think our eldest was 15, to one of those outdoor activity centres. We had an absolute blast. Their behaviour, they were like swearing feral raccoons. They were amazing. But so the reason I'm kind of laughing there was another group there who were much younger. and turned out to be a Christian class.

Mark

I mean, I blame the person that booked those sessions side by side.

Jo

That's not you. We had to share a dining room and at one point I walked in with my lot just as one of them was going, Fucking no, fuck And just at that moment, their leader said to this row of beautifully lined up, sat gorgeous kids, So who would like to say Grace?

Mark

Oh, you're kidding me.

Jo

So, yeah. I mean, I don't know what the moral of that story is.

Mark

I mean, yeah. Like you say, it's about choosing which boundaries to set, which to enforce and also which ones to negotiate. Because I think we need to negotiate boundaries are negotiable. And I think the implication that we don't set boundaries is stuck in this fallacy that we're the only people as the parents that can set the boundaries. And I think it's important to say no, we set boundaries, we just are but we're not the only people that have an input into that.

Jo

And I think for a lot of autistic people, the why is really important. And i in that like dictatorial parenting style, though it would be, well, you need to do this now. Why?

Mark

Because I say, yeah, yeah, yeah, yeah.

Jo

And actually, that doesn't work for autistic kids. That will just make them cross. So, yeah.

Mark

But also, it's quite interesting when you open up your mind to the why. And go, actually, why is that? Why is that important to me? And it's exhausting sometimes because you don't want to have to explain everything all the time. It's like, no, why can't I go to the supermarket in a onesie?

Jo

No reason.

Mark

No, fine.

Jo

And you might actually think, oh, yeah, actually, you can. It doesn't matter.

Mark

Yeah, very often I do, because that's it's again, you know, responding to their input and what they want.

Jo

Yeah.

Mark

So um so what what response? They just need boundaries. I think it's like they have boundaries. It's just that You know, they're just not your boundaries. You might not your boundaries are not a consideration for me right now, Sheila. I don't know why Sheila's getting the shit here, by the way.

Jo

Sheila is the embodiment of arseholes.

Mark

Another one that I've had from a listener that said, You just need to push them out of their comfort zone a little bit. Then they'll see how fun it is.

Jo

Yeah, yeah, yeah. Again, it's just like I'm gonna force you to have fun. You will have fun. You will have fun now. You will do it on my turn. I mean Yeah.

Mark

Isn't this fun, Toby? That's like Toby's who's got like under the table crying. 'Cause there's a tiger. Come on, Toby. Morris dancing is supposed to be fun. Like, Tao is triggered by bells.

Jo

I mean, it's a tricky one, isn't it? Because I'm all for. All humans kinda sometimes just pushing yourself a bit out of your comfort zone. But also, it's People who make those sorts of comments, it's the absolutely innate lack of respect and understanding of what we do as parents, which is constantly evaluating can my child manage this. Could my child manage this thing if we just make this little adaption?

Mark

Yeah, yeah, yeah.

Jo

And it's just an assumption that we're just sat at home going, No, I don't want to. No, I can't. Yeah, can't be bothered.

Mark

Yeah, yeah, and it's like you say, it is. there is an element of validity to it in that, you know, I'm constantly having to reassess what they are capable of managing on a like a daily basis. Because it's not just, you know, it's not just that they don't have the ability to do that at the moment. It's that today they don't have the ability to do it.

Jo

To do that.

Mark

Tomorrow, when they're a bit more regulated, when they're, you know, they haven't just come back from school, then they'll have the ability to do that. So then I might push them out of their comfort zone. I might suggest a family game of Uno, right?

Jo

But if we've just come back that is insane, Mark. What are you doing?

Mark

But if we've just come back from being out. That's the worst thing I could do right then. You know, we need that downtime. So so I am we are constantly pushing out them out of their comfort zone. I've spent most of their childhood mistakenly trying to push them out of their comfort zone until I realized that they weren't able to do stuff. And it wasn't because they, you know, they didn't want to do it, it's because they weren't able to. So it's their reaction to pushing them out of their comfort zone that helped me understand their neurotype. Without that, I wouldn't have realised, right?

Jo

Yeah. So no, Sheila, we won't be pushing them out of their comfort zone because It won't be fun for you, for us, or for any of the other nice people in this cafe.

Mark

But that is, I think the response to that is that they are constantly being pushed. Out of their comfort zone. The fact that I'm standing here having this conversation with you is way out of their comfort zone. Look, look at him over there now, spinning around

Jo

Like, look at the finger clinging to my leg, trying to pull me away from you, because I can't bear it.

Mark

It's already out of their comfort zone, Sheila. Back off. I think the perception of what other people think is. within or outside of our kids' comfort zone is is much different to what we know. You know, we understand our kids way better than they Can so you know if if taking them taking them to some public event to a monster truck rally is Is, you know, I need to push them out of their comfort zone. I'm like, no, because this is way, that is so much further out of their comfort zone than you have any concept of. I'm not just going to shove my kids into a mosh pit so they can see how fun it is, Sheila. All right.

Jo

I thought knowing your kids as I do, I think Jay would fare Pretty well in the mosh pit. He'd be windmilling. He would be windmilling. Everybody's flying. He'd be trying to get out though. To be clear.

Mark

Yeah.

Jo

Well, yeah. I mean, there is that, but however, for those brief few moments, he would be a bit more.

Mark

He'd be alive. The similar vibe to the pushing out of the comfort zone is you need to challenge her more. I had that a listener said that. Challenge her more. Like, and again, our kids face unfathomable challenges every single day. So don't ever assume that they're not being challenged enough.

Jo

Yeah.

Mark

You know, some days leaving the house is a challenge. You know, speaking to grandma on the phone is a challenge.

Jo

Oh my lord. Yeah. For more reasons than one, but yeah. Oh, God. Where did you even begin with responding to people like that? I think with all of this, really, it's just having in mind, just

Mark

Just to push back and say, no, like they are. They're being challenged in ways that you don't understand because you don't understand their neurotype. And, you know, they are being challenged simply to be out of the house right now. Because it's dysregulating and it's overwhelming for them. And they are facing untold challenges every day, yet, still, none of these challenges compares to the challenge of having to deal with your shit, Sheila.

Jo

Oh, but here's the thing, Mark. Do we, as parents and advocates, do we try to educate the Shilas of this world? Or do we just tell them?

Mark

Well, well, I mean, this is something that underpins all of this, isn't it? Is that ideally, really, you want those people to be able to leave the situation? with a different light on the ignorant comment that they've just said and with a better understanding of how neurodivergence work. However, not all people are open to that. You know, a lot of people are so closed minded, you're just never going to convince them of that. So that's where you you know, you can say fuck off. I wouldn't. I wouldn't. I wouldn't be so rude.

Jo

But I would. I have regularly. I'll just piss off and mind your own business.

Mark

I wouldn't. I would just sort of you know, I'd just sigh and shuffle away and and judge them silently 'cause I'm I'm Largely non-confrontational. No, it's just, you know, it's just how I choose to deal with it. But some people are open to this. And there are some things some of the comments that we're going to talk about in terms of the ignorance is not ignorance from a set position. It's ignorance because they ha they don't understand enough. And sometimes you will have a comment that is ignorant, that you can then go, oh, well, I've got, I can actually help here, I can help you understand it more. That is definitely certainly people that are in in and around your s your kind of inner circle that might need a little bit of understanding about what your kids are. Facing. I think you can then push back on that and say, well, you know, and don't be eggy about it, but just say, you know, this is what they're experiencing. And you probably don't know this.

Jo

So just be aware of that. Yeah. See, you're a better person. Meet Dot quite regularly tells me when I when I do just go, I'll just piss off Dot will go, Mum, this is why you've only got one friend. This sort of thing right here, mum, that's why.

Mark

More of these comments. One is you're a pushover. Don't give him what he wants. Are you too afraid to say no? Was someone like a Neuroshambler messaged me on the socials and said that. Like, are you too afraid to say no? And I think, you know, this is back to picking your battles, isn't it? Yeah. Like fear doesn't often come into it for me. It's more about like, you know, is this worth standing my ground over? In the scheme of things, because if I stand my ground, it's going to increase the head dysregulation, which is going to make things a lot harder for all of us. And it's going to distress my child as well.

Jo

Let's not remove that from the equation from How I'm remembering. So it wasn't one of my kids, it was a girl that I used to have the absolute privilege of doing some one-to-one work with a couple of times a week. So we're in Tesco's. I can see that she is about to blow. All we have to navigate is getting up the lift to the car and then contained and I can, you know, help her regular, all of those things. So we stood by the lift and she is just repeatedly smashing the lift button because she needs that lift to come down.

Mark

Right, okay, yeah, yeah, yeah, yeah.

Jo

So Funny enough, I don't say no, I don't set a boundary about the lift button, because I know what will happen If if I choose the fucking lift button as the hill, I don't know.

Mark

And also the lift is going to come anyway. It's not going to stop the lift coming.

Jo

So so enter Sheila from Tesco's. Sheila comes barging up and just takes it upon herself to say, uh, can you stop her from pressing those lift buttons, please? We had the lift break down last week.

Mark

Right, okay. Okay. Because of the because of the button being overpressed.

Jo

Exactly. I I resorted to sarcasm, which is apparently the lowest form of whiffs.

Mark

Sometimes it's a very dependable go-to though, isn't it?

Jo

So I went, Oh my god, what, it broke down from someone pressing the button Oh, that's bad, isn't it? Oh, that sounds quite dangerous. And are you sure we should be using this lift at all if pressing the button makes it break down?

Mark

And how did Sheila respond to that?

Jo

Sheila just sort of harumped. And shuffled away again, but you know, would you just for fuck's sake?

Mark

But that is it. It's cheesing the hill, isn't it? Choosing what is a reasonable boundary to set, and And where to sort of allow them to have it. And sometimes it's like buying stuff, they want to buy stuff, and you know, and sometimes You know, I've got shit to do. I can either buy you the spider plant you've suddenly become obsessed with, or I can deal with a massive public meltdown, which no one wants.

Jo

So I think we'll just get the spider plant. But I think yeah.

Mark

There's the assumption that we're not weighing all this up.

Jo

You know, that we're just like constantly in our heads going, Oh, if I tell her to stop pushing the buttons, she's gonna kick off down here and I need to get her upstairs where I can contain the kick off and Ah!

Mark

Yeah, yeah, yeah, yeah. I mean, if we're honest as well, though, sometimes fear does come into it. You know, like I expect if you've got a particularly explosive child, that is a legitimate concern. If they, when they are dysregulated, they explode and they do resort to hitting. And to physical stuff. So when they say, are you afraid to say no? Sometimes that is true.

Jo

Absolutely, yeah, because all hell will break loose if I say no in this moment. And that doesn't mean I never It's a reasonable fear based on lived experience.

Mark

It's not just, you know, like, oh, you're scared of your kid. It's like, no, like this is so much more complex than you realize.

Jo

Yes, my kid can and will do serious damage if I choose to lock corns in this moment. And that doesn't mean that I'm not the adult. It doesn't mean that I'm not. Setting boundaries, it just means that I know how to and when to set the boundaries. Yeah.

Mark

Yeah, there's a lot more going on here than you possibly realize, Sheila. There's one more in this blaming the parents section. And there's been a lot.

Jo

I mean, I feel quite Quite blind.

Mark

Yeah, I know.

Jo

But I don't care.

Mark

Oh, there's a couple of versions of the same thing, but but how will they manage in the real world? They need to learn, right? That's one. And also, they won't be able to have reasonable adjustments like this in the real world. Which the the newest traveler that wrote in said, What world are we living then? Fucking Narnia. I love them. This is the real world, Sheila.

Jo

Fairly sure my house is real. I don't know.

Mark

It could be an elaborate hallucination.

Jo

Ah. It's a tricky one because again, it's one of those where there is a kernel of truth. There is a kernel of we somehow have to prepare these kids for adulthood and navigating the world. But Surely, the best way of doing that is not to absolutely decimate their self-esteem and cause them to become a nervous wreck.

Mark

Yeah, because they're not going to learn in that situation, aren't they? No. If you force stuff through. Um and it is it's it's a very pessimistic approach because it's I prefer to be more optimistic and think that if what we we have an opp an opportunity to teach them to advocate for themselves. Yes. Right. And that's how they're going to navigate the world. We that we don't just sort of force them into stuff. We listen to them and we help them articulate what they're feeling and how they're feeling it and help them to request accommodations that that people can reasonably make for them. It's just a much more interactive way of teaching them.

Jo

Yes, and also the real world is. changing at a rapid pace. So people are becoming more and more aware of neurodivergent needs, but also the way in which we work and socialize. is different. So actually, the real world might be our kids working remotely in a job that they're able to do from home with accommodations to mean that It might mean all sorts of things, none of which necessitate forcing them to the what was your example, the monster truck belly Maybe bringing the tiger with you just to really make sure they're encountering reality.

Mark

Yeah, that's it, isn't it? But also because at this age as well, school is such a big thing. School is a huge thing and if you think about how much like the real world, they're not forced into school. They're not forced to sit in an environment that is dysregulating and overwhelming and forced to do things that they don't really see much value in. All of that, when you get out of that, that's that's the real world.

Jo

That's the real world.

Mark

And giving them the tools to be able to advocate for themselves and to understand what environments they're comfortable in and can thrive in and which environments they absolutely have no business being in because it's triggering for them. Is a lesson that we're teaching them. Yeah.

Jo

That's how they manage in the real world. Yeah, that's how they do it. God damn it. You really wound me up, Mark. I was in a good mood.

Mark

Sorry.

Jo

And now I'm like, that God, I want to punch someone.

Mark

I really hope none of our listeners are called Sheila.

Jo

Sorry, Sheila.

Mark

Sorry, Sheila. Not you, it's the other Sheila's.

Jo

It's the yeah that. And I'm picturing Sheila. She's got like one of those cat bum mouths.

Mark

And she's got glasses and she sort of lowers her glasses to peer at you over them in out of judgment. That is largely the suite of ignorant comments that you get in the realms of parent blaming. There is also the comments that you get where they are blaming the child. They're blaming the neurodivergent. And this, you know, again, is steeped in ignorance and a lack of understanding about neurodivergency. So I'm going to go through some of these. I'll do it.

Jo

Do it. Do it.

Mark

Right. One that a listener sent in was sometimes it's a choice. Right. As in their behavior.

Jo

They're choosing.

Mark

They are choosing to be dysregulated. Like, what planet do you live on?

Jo

Sometimes it's a choice.

Mark

Yeah. Like some days our kids wake up and simply choose to be autistic.

Jo

They do.

Mark

They just decide to be neurodivergent that day.

Jo

An extra sprinkling of autism on my cornflakes today, please, Mother. I'm going to ride it. I'm going to go for it.

Mark

I'm going to go for it today, Mum.

Jo

Until you see this.

Mark

It's my choice. Oh, my God.

Jo

No, no, it's not.

Mark

a choice it does make you wonder that if it is a choice why they don't wake up some days and decide to be neurotypical for a change because it's a lot easier from what i can see if they came down one morning and went hello mum did you sleep well

Jo

It just happened. But also, if it if it is sometimes a choice, who the fuck would make? that choice. No one in their right mind would choose to feel so anxious, so dysregulated, so overwhelmed. that their only option is to kick off in this fine McDonald's, you know? No one would make no child would make that choice.

Mark

Yeah, and that's what that's that's the perception, isn't it? That that their behaviour is is caused by a choice to be disruptive or destructive or chaotic, and that that that is for some reason rewarding to our kids.

Jo

And that that yeah, no, no, it's not a choice.

Mark

Yes. All kids who can do well want to do well. Exactly. You know, and that's Going back to that, isn't it? So, the response to sometimes it's a choice.

Jo

I mean, this conversation is a choice, and I'm choosing to opt out. I'm choosing to tell you to fuck the entire way off.

Mark

This I was genuinely shocked by. This is a a comment that someone made to one of the new aschamblers: is they're not autistic, they're just horrible kids trying to get their own way. Oh my god.

Jo

It's like, whoa.

Mark

I mean, where do you start? There's so much in that one. They're so loaded.

Jo

This is an angry, angry person, saying this. I mean, I think you start with. Congratulations, because you've clearly become a doctor since I last saw you. Well done. Thanks. You are now able to diagnose children. This is amazing stuff.

Mark

This is like a triple A triple whammy in terms of comments because if you look at it, like first statement, they're not autistic. So just let's just, you know. to airbrush out that diagnosis. They're not autistic, so you're actually now completely denying autism as your opener. That's the first bit of your sentence.

Jo

You've waded in there. You've gone in hard there, Sheila. Let's see where you go next. Okay, then they're just horrible kids.

Mark

So you called them horrible as well. So you know, there's all of that judgment based on their behavior and your opinion of their behaviour. And then finally, the Piesta resistance is that they're just trying to get their own way.

Jo

I mean, just where'd you go with that?

Mark

Triple wound.

Jo

I mean, other than a swift punch to the face, there's not much

Mark

It's so, just so ignorant. It's like it's so, you know, and again, I've got follow-up questions.

Jo

Who said this?

Mark

Yeah.

Jo

Was it a friend, a family member? Was it a stranger? Was it. Are you still talking to this person? I mean, I would hope not.

Mark

I would hope not. Horrible kids trying to get their own way.

Jo

He reminds me of: he's not the Messiah, he's a very naughty boy. They're not autistic, they're just horrible chills at night.

Mark

And there's a similar one to this that someone sent through as well, which I've heard a few times. He's very manipulative. He's being manipulative, you know. Like they're what? So, yeah, this is the idea that your kids' behaviour is just so they get their own way. They're trying to get one they want. Again, it's a thing, isn't it? It's like, yeah, it seems a little. Seems a little extreme to be staging a two-hour meltdown just so you can separate his chips from his beans.

Jo

You know, like, I mean, as manipulators go, he's not exactly skilled because. Yeah, he could have just asked, to be honest. Yeah, I probably said yes.

Mark

Yeah, but there is this view that children are manipulative. Oh, sorry, our neurodivergent children are manipulative. which I've covered on several episodes previously. The Am I Raising an Arsehole episode, we discussed that one. And some other ones. But there's and again, the explosive jar was quite helpful. For me, here of going, our kids aren't being manipulative because that implies a Machiavellian level of forethought and scheming that they're just not capable of.

Jo

Yeah, he's four years old and he's got a mark off his nose.

Mark

He's plotting to overthrow you.

Jo

But it's really interesting. So historically. That's what they used to think about babies, isn't it? That if your baby cries, they are manipulating you into being picked up and carried and loved and mollycoddling again, isn't it? And we would now look at that and say, Well, that is Pig ignorant and bordering on child abuse. Yeah, just leave him to cry it out. That's the similar mentality, right, isn't it? Yeah, yeah, yeah.

Mark

It's again, it's a competitive approach. To parenting, isn't it? It's like, you know, you don't give in, don't let them win. It's a, you know, it's a winner-v-loser mentality to parenting, which is like a, it's baffling to me. I think it's quite an old school approach, again, isn't it?

Jo

Yeah. And maybe we have all internalised some of those approaches somewhere. Because I mean, I don't know about you, but I was raised very much in the era of you will do what adults say. Um yeah, maybe it just pops out.

Mark

I think that people parent initially the way that they were parented, unless it was like an absolute Traumatic childhood, in which case you go the opposite way. But if you feel like you've got out of childhood pretty much in one piece and you know you largely respect your parents. then you sort of follow along the same lines. I know that I did when I first started out, but it didn't work, right? Setting boundaries and then going, you know, we're going to you know, and sticking to those boundaries no matter what, and instilling punishment. I tried that. Like, it didn't work. So, guess what? I updated my views. I did some, I learned a bit about it. I thought about it. I discussed it with Tam. I, you know, we tried different approaches and noticed that some of the other approaches worked. But If you're neurotypical and you've started down that route and you haven't encountered that friction, you haven't encountered that failure. Right. And your kids just do that, then you just assume that that works for all kids and therefore cut and paste on everyone. And if you're not doing that, then it's because you're not pointing at the boundary hard enough.

Jo

Yeah, you're not shouting loud enough, and if you do that, then they will. And it comes back to the notion you have to parent the child you've got. There is no point applying neurotypical parenting styles to a neurodivergent child because it won't work. You can knock horns as much as you want. You will lose every single time. So just do it differently.

Mark

And I think all of this does boil down to that, doesn't it? To the fact that neurotypicals don't understand that neurodivergence needs to be But parented differently. You know, and that you're not being neurotypical enough. You know, or or or you know, conversely, because because not only are they looking at your parenting and saying, well, that's not you know, that's not like my parenting and therefore you're wrong, they're also looking at your kid's behavior and seeing that that is something that needs to be cured. That needs to be something that needs to be squished. And it's like, dude, if you look at mealtimes in my household. Don't squish that. It's fucking glorious. It's absolutely like yesterday. It was yesterday my parents were over. And it was like my parents get it now. But they are and it's so lovely to see that my parents are just like, ah, they're just doing their thing because they were just twirling around and roaming around with food and chatting chatting. They were chatting so nicely and absolute nonsense. Like it was, it was a joy. But if you don't know that that's how they communicate and that's what they need to be to be regulated and happy, you would look at that and be appalled and you would want to squish it. But I see that and I love that and I thrive on that now, knowing that they're happy and that the noises that they make are fucking weird, but but happy noises.

Jo

They're happy noises.

Mark

Yeah. And that that's the kind of behaviour that doesn't need to be squished?

Jo

No, of course not. And they're eating, right? So isn't surely that is the goal of a meal time, is that job done? Does it matter whether that's like crouched on the table like a gargoyle with fists full of grated cheese? Not really.

Mark

So. I think, yeah, I think that's it. It's it's it's coming from a double misconception. It's coming from a misconception that their behavior is something that needs to be parented out of them. And it's also coming from a misconception that your parenting is not kind of autocratic enough to take on that challenge. It's like, no. No. Wrong. Both counts. There's one here that I was sent from a lot of different people in different guises, and it's one that encompasses that sort of blame of the child and blame of the parent. And also encompasses this complete denial: is they're fine where they're with me.

Jo

I'll go.

Mark

She's fine when she's with me. They're fine in school. They seem perfectly fine to me. Lots of different variations of this one. And this is that's a hard one to take. Because it's they're again, they're casting doubt on the diagnosis.

Jo

Yeah.

Mark

I think fundamentally, they're sort of saying, well that you're making this shit up.

Jo

That's the subtext, isn't it? That this is a parent who is just inventing these issues for their child. I mean They look fine, don't they? A child who is terrified and therefore masking and therefore squishing all of the things about them that make them them might look fine from the Outside, but they're not, yeah, they're not fine, they are stressed beyond belief, and that is going to explode like a tsunami of shit. the minute they get back to the place where they feel safe.

Mark

Yeah, and that's that's why I think this way if people say that because they don't see what happens behind closed doors, they don't see what happens when your kids get home and they do unmask or they just, you know, regulate in whichever way they know how to. But it is quite a fun one to respond to because you can point it out, right? You can say, yeah, the reason they're fine with you is because they don't trust you.

Jo

They're masking.

Mark

They're choosing to mask in front of you because you don't make them feel safe, right? So you're not seeing the real them. Okay, and now one day, hopefully, they're gonna trust you enough to unmask in front of you, and then you will know. You will know the real them, and you'll see the real

Jo

Them and they're glorious technicians. Exactly.

Mark

They are going to be skimming and twirling and climbing on your sofa and talking over you, and there is no greater endorsement to you as a person than if they share that.

Jo

Yeah.

Mark

So until then, you know, they might seem fine, but please be aware that just being around you has taken an enormous amount of effort. And I'm starting to understand how they feel.

Jo

Yeah. I have come across this so, so often with parents. That I'm supporting in meetings at school. And it's always that little pursed lip implication at the end of, well, they're fine in school.

Mark

Yeah. Yeah, there's discipline in school, isn't it? School is quite a big one to hear that from because you're looking to. to them for support.

Jo

Yeah. And instead you're being told well, it's being implied 'cause no one ever wants to say it out loud. And, um, God, I remember supporting one parent. And so she'd become so embittered about this constant being told they're fine in school, they're fine in school, and the child saying, Mum, I'm not I can't go, I can't go In the end, she said to her child, Well, look, why don't you start telling them in school how you're feeling and showing them and maybe they'll understand. And even that was then twisted and interpreted as, Well, mum's now coaching me to behave badly. Isn't it? A parents really can't win, can they? Yeah.

Mark

I mean, if you get a good Senko who gets it, or good supportive teachers then that's great. But so but one of the reasons that the diagnosis journey is so hard sometimes is because they're they're well, they're fine with me, they don't see it. And you know, that's that's a really difficult thing to get round.

Jo

I'm depressed. Okay, sorry. Sorry.

Mark

Yes, I get that it's uh you know, this has been It's quite a lot to deal with, isn't it? So what we'll do is we're going to pause this part of this recording now. So we will do there's a bunch of other ones For future episodes. So I've got some, you know, when people give you practical advice that they are absolutely certain is going to work. The ones that rank autism and decide how severe it is. You know, ones that undermine their neurodivergency. There are ones that literally deny it exists. There's the complete fallacy around neurodivergency and those misunderstandings.

Jo

There's also the completely batship mental ones, which I'm really looking forward to because there's some that I got spent upon. Because we're watching futures like that.

Mark

So that's going to happen in part two. This one, uh, but for now, we're just gonna kind of uh we'll do a bit more uplifting and we're gonna look at the positives. It's not all rubbish. Okay, so yeah, we're gonna look at the positives of having to deal with uh tackling ignorance. I think partly it does it builds up a bit of an armor. The amount of times you have to deal with it, you know, you're uh significantly less apologetic. As time goes on, and you build up responses that you can use, and you stop giving a shit. The other thing is, it weeds people out quite soon.

Jo

Very yeah, you definitely, definitely find out who your people are and who the people that you just don't want anywhere near your kids are. And that's okay.

Mark

That's you know, I think there's a lot to be said for that. Like, genuinely, some of some of the stuff that people have said, you're like, Yeah, you're not listening. I've told you all about our journey, you still don't get it. So, you know, fine. Okay, I now know. It's being fun, but goodbye. Yeah.

Jo

Yeah. Yeah.

Mark

And, you know, the other positive about tackling ignorance, which we touched on a little bit earlier. Is you can educate people. It is possible for people to learn and to grow. And, you know, that was And it's not an easy thing to do. But we are in a position where if they flag that there's a deficiency in their understanding of your kids and their neurotype You can then, given the right situations, given that, you know, just assuming you have enough spoons, you can then. help to shape their understanding of it. Because education is the only thing that really eradicates ignorance.

Jo

Absolutely.

Mark

And so taking these opportunities to talk to people about neurodivergency and tell them how that shows up in your kids in different ways is, you know, it's a really posit positive thing. It's exhausting.

Jo

It takes a lot out of you, but it's it's an opportunity to eradicate the ignorance that you see in the world. Things are changing. I s I swear it it's glacial, but things are changing from when I mean it's 18 years now since he was diagnosed at three my eldest and yeah there's been a considerable considerable drop off in the number of ignorant comments as the years have gone by.

Mark

Yeah, which is good.

Jo

And maybe we will reach a point where people just aren't so ignorant? Or if they are, where they just keep that ignorance in their own heads and don't share it with us? I think it'll be a two tier thing.

Mark

I think firstly, people's understanding of neurodivergency is improving. It's being talked about more. And also, crucially, a lot of these ignorant comments for older people who are ultimately going to die out.

Jo

So, I mean Wow. I'm just looking at the long term. We can't wait a minute. It just gets better and better.

SECTION INTRO

Neurodiversity Champions.

Mark

Okay, let's look at some neurodiversity champions. Now, these are people that are doing wonderful things in the world of neurodiversity and awareness. These are individuals or organizations. Have you got anyone, Jo, that you want to bring to the table?

Jo

I do. Um, and it's a personal one for me. So Tina, who I won't use surnames, but who I've known for a number of years. And She is absolutely incredible. She has set up a work experience placement for my daughter.

Mark

Amazing.

Jo

in a care home, and she has just created this bespoke dot shaped package. So that so that Doc can go and experience success is having a brilliant she calls them her oldies. She's having the most joyous time working with her oldies. So Tina You are my personal hero and I can never ever and I know she listens, so I can never, ever thank you enough.

Mark

Oh, that's wonderful. Having people who are yeah, like you say, but like creating, crafting you know, opportunities for our neurodivergent kids to thrive and and you know, presumably making the relevant accommodations for that.

Jo

Oh, yeah, Dot's got a quiet space, she's got They've got um I don't know why this tickled me so much, but they did a fire safety plan and in the plan there is a designated member of staff who must just grab Dot and get her out of the building. I love it. Because Because they recognise that actually if loud bells go off, Dot's most likely response is going to be freezing. Just incredible, incredible stuff. And I'm so happy about it.

Mark

Awesome. Thank you for that.

SECTION INTRO

Tiny Epic Wins!

Mark

Tiny epic wins. Now, I you know, these are moments that in a neurotypical family would not really even be considered wins at all. Uh, but in our neuroshambolic families, they are epic wins. And I had one recently because it was recently half-term, and I had the kids, and we played Frisbee in a park. All all of us together. So I took everyone to the park on my own, obviously. And I was like, just need to get out of the house. You know, sometimes in half term you're like, look, let's let's just go out, have a little just just venture outside like curious badgers And we'll see what we can find. See what chaos. And I was like, I've made lunch, but let's have a picnic, right? We'll just go to a park. So I put all the lunch in a bag. I was like, let's go. And Otto was already a little bit dysregulated and he likes being outside. Like, he likes it. But for whatever reason, he was feeling a bit dysregulated. So I decided to just cram a frisbee into my bag so that if he needed it. I could sort of just throw like exercising a dog, right? Like a dog. So I could just like throw. Throw the frisbee and get him out of his head. You know, like I've spoken about this previously. If he's doing something physical, he doesn't feel the anxiety because he just taps straight into the physical. So we sat down for this picnic. And we're eating the picnic and Jay's enjoying it and India's enjoying it and Otto is not eating and he's sort of just really, just really dysregulated. And I didn't really know what was up. So I just went, Otto, go long. And he just went what? And I showed him the frisbee and his eyes lit up and he was like a dog. He just kind of ran off into the distance. So I threw this frisbee to him and he instantly brightened up and we start doing this this frisbee. And Jay and India are eating. And then Jay went, Could I play? And I was like, What? Like, that is unheard of for Jay. So I was like, Yeah, of course. So then he joined in. And then India didn't want to be left out. So s she joined in. And we played Frisbee for about half an hour, spontaneously, in the park, in the sunshine. And I was just like, I'm doing it. I'm doing it. I'm being neurotypical.

Jo

Look at me, look at me, I'm parenting.

Mark

And the people would have walked past and go, Well, there goes a truly neurotypical family. That's for sure. I don't know much about their family, but I'm sure they're all wired in the same way. Oh, how It was amazing.

Jo

It was like spontaneous.

Mark

It wasn't, you know, it was, it was so. That is my tiny epic win because it was an enormous.

Jo

That is. Thanks for delighted for you. Now that's brilliant. Thank you.

SECTION INTRO

What the flip?

Mark

Okay, we're going to what the flip moments now. These are moments where our children will say and do things that completely perplex us and and leave us scratching our heads. I I mean, I love it. These are the little windows into just quite how neurodivergent our kids are. Do you have any what the flip moments?

Jo

I would like to hear yours.

Mark

Okay.

Jo

Because yours always crack me up. So I'm going to remain quiet and just soak it up.

Mark

I don't know if you've been listening to him recently, but India has been coming out with more and more of these. So you know, like India, when she was masking early on, didn't have much to do with what the flip moments, but now she's coming out with some caucus One of my favorite ones from recently was Are we leaving this very second? And I went, Yes. And she went, Well, that second has passed now, so we don't have to go.

Jo

You were helping me. I love it.

Mark

I was like, ah, touche. God damn it.

Jo

Well played.

Mark

And the the other one I had very recently was was from Jay, because I know you love a Jay one. We were messing about and we were We were having a dance off for some reason. Not quite sure why or how that evolved. And Jay didn't want to join the dance off, but he offered to be the judge. And India was not on board with this idea because she complained that he was not going to be fair. And Jay's response was, Who would I be partial toward? I hate you all. I love it. Yeah, fair enough. And she accepted that as well.

Jo

You'd all just shrug and go, yeah, exactly.

Mark

So she let him judge.

Jo

True.

Mark

I love it.

Jo

I love it.

Mark

Okay, so that is it for part one of this tackling ignorance episode of Neuroshambles. Firstly, Jo, thank you so much for coming back and for For you know, for going through all of these because it's been both cathartic and probably quite triggering in some ways as well.

Jo

Thank you for having me, but yeah, I'm exhausted. Yeah, okay, so go have a lie down before we record part two, if that's all right.

Mark

I will also say a huge thank you to the listeners, not only for listening and spreading the word and giving me lovely reviews. and nice comments on the socials, but also any of you who've emailed in or contacted me on the socials in response to this because it's been really nice hearing the crazy shit that you're having to deal with as well and hopefully sort of tackling them on your behalf and discussing them. So thank you for that. And there will be part two coming up very soon. But for now, I just will remind you of the socials. We're on Instagram and Threads and Facebook and TikTok. If you've got anything that you want to email in, please feel free to email me at hello at neuroshambles. com. But other than that, all that remains for me to say now is have a nice life.