Tackling Ignorance - Part 2 | Jo Matthews

EPISODE TRANSCRIPT

Mark

Hello, and welcome to episode 40 of Neuroshambles. Lovely, as always, to have you back again. I didn't know how many listeners we might lose after the last episode, which was relatively ranty, I think, but it seems to have been uh pretty well received. I had some really lovely messages in response to the Tackling Ignorance Part One episode. One in particular from Chrissie, made me smile. She wrote in to say, I'm running errands and listening to the newest Neuroshambles. Nineteen minutes in and I've already snort laughed in co-op and spit coffee laughed walking down the street, which is Quite the endorsement of the episode. It's lovely to hear that kind of thing. To be honest, not all the feedback has been positive. There has been some pushback on the socials. in response to the video I put out there on um the insane comment that we should make their home lives more unpleasant. So if someone had watched that entire clip that I put there about Jay fancying his chancy With a tiger, and his response was: take their phones and gaming systems off them. If you make them do household chores, they'd all go to school. Um which it seems like he's entirely missed the point. It's almost like his mind was made up and it didn't matter what the clip was about. He was just gonna have a rant anyway. So um thanks for the response. Anyway, I can safely put you in the Sheila column of respondees. Anyway, we'll move on from that because we've got lots more of that nonsense coming up. So strap in and prepare yourselves We're also going to be having some Neurodiversity Champions, tiny epic wins, and what the flip moments as well. So let's get cracking. Meet the guest. So, this week's guest is a firm fan favourite on Neuroshambles. It is the return of the wonderful Jo Matthews. How are you doing, Jo? I am great, looking forward to this. Just let's see what else you can hit me with. Exactly. Obviously, you know, people are familiar with your setup if they've listened to the previous episode. If they haven't, then let's just do a quick whistle stop tour of the neurodivergency in your household.

Jo

So in my house, I am the very, very proud parent of two young adults George is twenty-one and Dotty is eighteen. Both are autistic. My husband and I We both think we're probably autistic, but have never actually been diagnosed, and we're a very happy household. Awesome.

Mark

I should probably at this point just, you know, it's always good to check in with my lot as well and just let people. Know the neurodivergencies in my setup. So Jay is diagnosed autistic ADHD. He is twelve. Otto is ten and he is also diagnosed autistic ADHD, but with a very different profile from Jay. So I'd say that Jay is explosive. Otto is implosive.

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If is the best way of describing that.

Mark

And then India is very recently diagnosed Autistic and even more recently now diagnosed ADHD as well. So I've got the clean sweep. You've got the hat trick. You've got the hat trick. 100% hit rate of autistic ADHD kids.

Jo

Amazing. And then congratulations.

Mark

Thank you. I've worked really hard. And their mum, Tam, is also late diagnosed autistic ADHD.

Jo

So I don't know what I am.

Mark

I'm just

Jo

Mainly bewildered, Mark.

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Bewildered, yes.

Jo

Mainly bewildered.

Mark

But it serves as my neurotype. Suspected neurotypical.

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That's it.

Mark

I'm just going with that for now. Um okay, let's stop dallying and uh and and crack on with the Let us dally no more.

Jo

What's the topic of the week?

Mark

So, this week's topic of the week is a continuation of the last episode we did on tackling ignorance because, frankly, we ran out of time to cover all of the suggestions that people sent in.

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So we thought we'd roll it over into another episode because there is simply too much ignorance out there to be tackled in a single episode of Neuroshambles.

Mark

So, we're going to be picking up where we left off to look at some of the ill-informed things that people say to parents of neurodivergent kids. So, in the last episode, we looked at a lot of cases of parent blaming. or blaming the child, sometimes a giddy mixture of both of those things, if they are really going for it. So today we're going to be looking at some of the other Slightly different, but still insanely unenlightened utterances that people have been subject to over the years. Are you ready, Jo? I am so ready. Let's do this. So another umbrella category that these comments fall under. Is what I've termed practical guidance from the clueless. Right? These people, you know, have you thought about this? Or I've heard about this. And, you know, like with the implication that you. Don't really know what you're doing, and that they probably do. Yes. So one of the ones that someone sent him was: Have you tried a routine? Wow.

Jo

Yeah. We didn't think of that. Amazing.

Mark

They've sat there from afar and watched your parenting and gone, I reckon. There's a lack of routine here. So again, this is it's it's again it's parent blaming to a degree. That's basically suggesting that You've not already tried routine. Like you just live in some kind of laissez-faire fun house.

Jo

To be fair. Anyone who saw my family out in public when the kids were younger would have been quite justified in thinking that it was an absolute shit show at all times.

Mark

Yeah, but this is a tricky one, I guess. Depending on how your kids' neurodivergency presents itself. Because there are different profiles, right? So if your child is just, you know, pure autistic, solid, gold standard autistic, with none of the other, you know, co-occurring conditions, none of this ADHD or PDA nonsense attached to it, then I think routine is really important. And they thrive on that and they need that. But as we know, there's all kinds of other factors at play for a lot of our neurodivergent kids. So as I say, if they have PDA, so if you're listening to this and you don't know what PDA is, because we mention it a lot, pathological demand avoidance or as I prefer the term, pervasive desire for autonomy. Basically, they need novelty. A routine bores them. So you can't you can't do the same thing every time because they're not comforted by that. If anything, they're irritated by it. Certainly with Jay and India. I think Otto needs a bit more routine.

Jo

But it's again, it's that suggestion that, oh, we hadn't thought of that. Oh, brilliant, yeah, routine. Oh, wow, thanks, I'm cured. Yeah, like, have you tried shutting the fuck up? You know? I mean, again, it's people who, yes, it's this idea that you've not actually done much research into it.

Mark

Yes.

Jo

They've done a quick Google and gone, oh, I know what works.

Mark

As if we haven't Googled yet, you know what I mean?

Jo

As if we might not have. Thought of that at some point along the way. Googling business, man.

Mark

The amount of googling that parents of neurodivergent kids have done over the years. So the idea that we've not thought about it, they've googled it and gone, Oh, what what helps autism?

Jo

Oh, routine, great.

Mark

It's like, dude, there's so much more going on with mine. And again, ADHD is another of those co-occurring conditions that almost is at odds With the autism. So, if you've got an Aud, as I have three of them, right? And Tam is also Aud, it's a really interesting mix. And Tam was able to articulate this a little bit more: in that Tam's autism, means that they need routine and consistency and they don't like surprises and they need to plan things, but their ADHD means that they get bored. Really is need novelty and need novelty. So those two neurotypes are at odds with each other a lot of the time, I think.

Jo

It's like I've heard it described as like a constant battle going on in your own brain with your two distinct neurotypes battling each other for supremacy and how we're going to live our li and it must be torture. It must be so, so difficult.

Mark

Yeah, because you can't win, right? Because you're or your either either your autistic side wins and you get the routine you're craving for, or your ADHD side wins and you get the novelty you're craving. Um, but I don't know how you find something in the middle.

Jo

No.

Mark

I mean, the thing is, you know, my my kids do have a routine, but it's only one of the things that

Jo

Yes.

Mark

That helps. You've got to be able to deviate from it. And again, it's a situation by situation basis, right? And it's what they're able to cope with. And as you're saying with your kids to the outside world, looking in, it doesn't look like there's much routine there, but there's something. There's something in place.

Jo

There's a basic structure in place. And I always said to people, Look, I see Know what I'm doing. Thanks.

Mark

That's a good response.

Jo

I like that. Yeah.

Mark

Yeah. It's probably a little bit like improv. Right?

Jo

Yes.

Mark

It's like improv comedy. Because you have this sort of an improv exercise where you broadly know how you start the scene. And how you end the scene and maybe a like a touch point in the middle and everything else just pretty free for just be ready for. That's probably the best way of approaching parenting audih D kids or PDA kids is Yes. Broadly, you've got this amount of time scheduled to do this thing, but how we get there is anyone's guess.

Jo

Yes. And what happens in between could be absolutely anything, and you just go with it. It's that improv thing, isn't it? Yes and.

Mark

That's what they say, isn't it? You meant to go yes and it's it's not easy, but and you've gotta practice and and hone your skills at it, but I think that's the way that you get the most amount of fun out of a given situation. When you've got neurodivergent little ones. Absolutely. Okay, another one that someone posted. was someone said to them, How about a parenting course? Oh my God.

Jo

Oh my God.

Mark

Well, I mean, the judgment from that statement, dude. Again, blaming the parenting, but also suggesting you have no idea what you're doing, do you? Yeah. And if we're honest. No, we don't. No, not really.

Jo

And sadly, in the work I do with parents, so many. Have been sent off to do, I think it's Triple P, which actually is a really good course for neurotypical kids. simply not applicable to what we're dealing with.

Mark

I will put my hands up and say I went on that course. Yeah. Me and Tam went on it, just so we could say, look, we've been on your fucking course. It's not helping. Yeah. Because we knew they'd be like, Well, have you tried this? Well, they're not helping themselves. It's like, no, we really are. So, yeah, as you say, we went on that course. Tam went. Tam went on the course first and basically just sort of asked questions at the end and they were like, Yeah, this isn't this isn't for you.

Jo

You're off.

Mark

No, you're yeah, you're kidding and not no, this is a different template of child you're dealing with. So the people suggesting the parenting course is well, yeah, I guess well, I can say, yeah, I did I did a parenting course And uh I broke the tutor.

Jo

You broke it's like the final boss on a video game.

Mark

So, um but yeah, that that's a horrible thing to hear though, isn't it? For someone to say that to you. Because again, it's it's that judgment and the implication that you're not able to parent without being told how to parent. And that is As I say, to a degree true, because we have to write the rules ourselves, we have to make stuff up as we go along.

Jo

And to be honest. We're the people that can give the course now, but um but only for our own kids yes, this is it because you can't then transfer even Even within your own family, your parenting course for child A completely not applicable to child B. It's it's not gonna work. Yes. No, they can um take their parenting courses and stick them where the sun don't shine because

Mark

No. No. Okay, another one that you get of people trying to help, and they've obviously done a quick Google or they've heard something and went, Oh, this applies to the that person I know who has a neurodivergency in their family. Is ADHD can be managed by a change in diet? Or have you tried changing their diet? I've heard cutting out gluten, sugar. delete as applicable can really help. Or I think it's all to do with diet these days. Too much sugar. Three that people sent in. And it's all based on this absolute Nonsense, I think. I mean it is.

Jo

I mean the whole gluten-free thing, that's quite popular, isn't it?

Mark

What? D it as a potential cure for neurodivergency.

Jo

Well, as a so-called you can't cure neurodivergently just no, and also if you want to, you're listening to the wrong podcast.

Mark

Yeah, it's true.

Jo

Or listen to something else. Because you won't find a cure here, my friend. Yeah, there's this, it's really popular, gluten-free, casein-free, and I think casein is like milk products. Right. And the thinking is that it somehow reduces anxiety. So it's not touted as a cure, but it's touted as something that will reduce symptoms.

Mark

Right. But I mean the anxiety that that neurodivergent kids feel, if you're gonna have a league table of things that cause anxiety Milk is pretty fucking low down. It's like noise and crowds and unexpected requests and milk.

Jo

It's this whackadoodle notion that the gut barrier in autistic people is somehow less effective than in neurotypicals, and that gluten and casein then affect brains. But I'm quite science. There is zero and I mean zero evidence that it actually works.

Mark

I mean, it sounds like such quackery that I didn't even really do much research into it. So I mean, I would have yeah, I would have thought if there was some broad consensus some broad scientific consensus, it would have been a little bit more prevalent in media rather than just someone pulling you to one side at a soft play and suggesting that you cut out the biscuits.

Jo

So also we are dealing with children and young people who will have a very, very limited diet.

Mark

Oh, yeah, that was a point, mate.

Jo

Yeah. I'm going to show you this.

Mark

Is this your meal plan for the week? Things. No, this is things. will eat. Yes, okay. So if you take gluten and sugar out of that, how many are you left with?

Jo

I mean nugs. Are they gluten in chicken nuggets, doctors? Meal deals, she'll eat a meal deal, pizza.

Mark

Gluten in.

Jo

Has it ah, bum. Um, give me an egg if you want death. And then she's added a dash and put or cheese. So yeah, I would my advice would be, and I'm no expert on dietary, but if you are dealing with a child who has a really restricted diet don't cut loads of stuff out of it. Yeah, that's what I'm saying.

Mark

My kids eat, you know, a f well, certainly Jay, he eats a limited diet as it is. So if I took out gluten and sugar I've got cucumber. That's it. That's what I'm left with. And that is essentially the diet of a slug.

Jo

Yes. Well, I mean. Slugs seem to be quite happy, Mark.

Mark

Weirdly, they don't seem neurodivergent. So I'm not sure.

Jo

Maybe there's some.

Mark

Okay, another one that I had uh people someone email in was this is a lovely one. That something they were told in public. Why don't you take the screen away so you can talk to each other? This isn't a cafe, right? Someone came over, decided they were going to stick their oar in. obviously offended by the fact that the kids were on the screen and thought that the the the problem with their family was that they don't talk to each other.

Jo

Oh my.

Mark

And obviously, the person emailed him this said, Our very presence there is dependent on the use of this screen. Like, yes, we have to face the fact that in public. they've got enough to deal with, right? And a lot of the time when all of that overwhelm is going on, our kids don't want to talk to us. There's time and a place for that. We could do that at home. We could do that in the car. Or we can do that not at all if they're too overwhelmed. Let's not force them to make chit chat in a place that they're already pretty fizzy in.

Jo

It's the idea that if you just take their screen away, they're going to sit up, look you directly in the eye and go, Hello, mummy, are you enjoying your cheese sandwich?

Mark

I prefer the Gouda, mummy. What's your preference? Yeah, you're not going to get the quality of conversation that that person is anticipating.

Jo

No, no. And yeah, I think there's a whole podcast around screen. But essentially, a lot of neurodivergent kids are using their screens to regulate. Don't take them away, don't limit their time, just let them regulate, for God's sake.

Mark

To be honest, my My approach really is to not put them into social situations where they would need screens to regulate. I think, you know, that's just but that's mainly because I don't want to have to deal with it. Like if I if I'm taking them to a cafe and I know they're gonna be fizzy and I know I have to bring screens, it's like I just I'd rather not. Do you know what I mean? Just so I can have a bacon sandwich in public. I could do that at home and they're not not an issue, right? So I tend to avoid that. And I know that that's not necessarily the best approach, I think. I think Tammy's better at taking them to things that are slightly more challenging to their comfort zone. But I don't think we use screens for that. at least thing.

Jo

Yeah.

Mark

So people sort of chipping in and deciding that they're telling us how what we need to do with screens. I can tell you what to do with your screen.

Jo

Yeah.

Mark

So yeah, I think like what's the response to that? Why don't you take your screen away so you can talk to each other? Is you know why don't you go and sit the fuck back down and mind your own business? But this is just when you got one friend.

Jo

Let's keep remembering this is someone who has one friend.

Mark

Another of the comments that people have emailed In revolve around this sort of notion that there is sort of a ranking of autism, right? So you get them saying something like Does he have it mildly then? Or how severe is it? was another one that I got. And it's I like I understand that there are different presentations of autism. And that's confusing to some people because obviously some kids are non-verbal, some kids are hyper-verbal. Some kids are PDA, so appear to be neurotypical when there's a lot more going on there. It's really hard for people to understand it. So they feel like they need to put a handle on how severe it is. So they can categorize. Yeah, so they can go watch. I don't know what you're going to do with that category. Yeah, exactly. How is that going to make you respond differently to the child?

Jo

I guess. I don't know. But saying it's mild autism, is it mild autism? Is diminishing their experience huge but and also mark let us not forget that the suggestion of mild autism by implication means that there is spicy autism

Mark

Yeah, too.

Jo

That's my go-to response. No, it's not mild. Very spicy. Extremely spicy autism here.

Mark

One thing that I heard someone say, which kind of resonated a lot really, is that Mild and calling it mild is really only indicative of how you experience their autism, not how they're experiencing it. So they might be there might be all kinds of stuff going on under the surface. That you're not aware of, that they're having to deal with, of trying to regulate themselves and to not be overwhelmed. calling it mild is is hugely disrespectful and and hugely underplays what what these kids are going through. on a daily basis.

Jo

It's about the idea that a child who has mild autism will present in a way that makes neurotypical People feel comfortable. Yeah. Yeah. And for me and for my kids, we're not about making neuropatypicals feel comfortable.

Mark

You know, we're about

Jo

Well, we're about authentic expressions. So it's that's where the need to categorise comes from, isn't it? Can I feel comfortable with this person because I can pigeonhole their experience and therefore how it how I respond.

Mark

That's interesting. Yeah, so mild is actually really how to what degree can they mask as a neurotypical?

Jo

Yes.

Mark

Yeah, yeah. Basically, can I can I interact with them as a neurotypical um regardless of all of the overwhelm that that causes them so that I can go about my business?

Jo

And then I can feel okay.

Mark

And the a similar vein is is are they high functioning as well? Oh, and I understand why people do it. Like I understand why they need to pigeonhole. In America, they've got levels, don't they? They've got level one, level two, level three. Yes. And I don't I'll be honest, I'm torn on it because I think it is is it helpful? I don't know.

Jo

I think there needs to be, because within my wider family, we have very much loved Young people who are what would be described as severely discussed. And their experiences and their parents' experiences are wildly different to mine and my kids. So it's around the language, isn't it? Because to suggest that Someone is high functioning or low functioning again doesn't describe what's going on for that individual. Yeah. Um doesn't even touch on the the struggles they are going through every day just to get out of the front door and present in a way that's acceptable To the outside world. Yes, and what's functioning?

Mark

What do you count as functioning? Like because you know, they you might have some kids who are not very sociable, don't want to socialize, don't want to communicate uh verbally. But they might be really smart and, you know, and and just have very specific skill sets that it's so reductive, isn't it? It's basically, you know, do they pass as a neurotypical

Jo

Yeah. I don't know. Do I feel comfortable? Do they pass? Or can I put them in this other box where I can tilt my head to one side and go, no, they're severely autistic?

Mark

Yeah. And neither is helpful. It is a tricky one because I think what they're trying to get a handle on how to interact with them, maybe, or just to get a sense, if they've not met them. Because again, I I come back to this this point a few times in this podcast of the word autism is so broad.

Jo

Yes.

Mark

That it doesn't give you any indication of the actual person. So if I was to say, oh, my mate's come in, he's autistic. You wouldn't know what to expect. That doesn't give you much information to go on. Other than that, you know, just let

Jo

Let some shit slide. Just be a bit patient. But yes. And maybe it's a normal human urge to categorise each other and to want to know where does this person fit in the social structures that

Mark

Exist.

Jo

Yes. I don't know, Mark. We've gone deep.

Mark

Yeah, it's one that I might do a separate episode about because there's a lot to unpack there, I think. There's a similar one. that a friend of mine emailed in, which is wonderful. It's a wonderful display of just Absolute stupidity in the wild, right? Okay. And this is verbatim what she emailed in. A teacher said to my autistic daughter, while I was standing next to her. I teach two autistic children, but you have the good autism, don't you? The good autism. As opposed to the bad autism. And then you look you pan round to the put the person with bad autism holding a flick knife. Just looking really mean. He's got a leather jacket on and smoking a cigarette. I'm the bad artist.

Jo

What the fuck does that mean? I don't. It means you've got the autism that makes me, the neurotypical, feel comfortable.

Mark

Exactly.

Jo

And that other autism, oh, I don't want to be dealing with that, that makes me uncomfortable.

Mark

Basically, high masking. Isn't it? It's yeah, you're high masking. That other kid, he doesn't give a fuck.

Jo

But I think you'll probably. CDC and Otto as well. For me, my two, George was very much bad autistic. He was, if he'd had access to a flick knife, God help us all. As it was, he bit everyone in reception class. called his teacher a bastard of crap. Just he was off the charts.

Mark

Bad autistic.

Jo

Bad autistic. Dotty was the little girl in the corner crying. And actually, of the two, Dotty was the one who was. Struggling in school, yeah, but because it didn't cause them any problems, she was the good autistic girl over there just crying quietly.

Mark

And that is the difference between Otto and Jay.

Jo

Jay isn't a bad autistic. Jay is bad.

Mark

He will let it be known.

Jo

I love him, but dear God. You know.

Mark

Uh he he says it as he sees it, right?

Jo

Exactly.

Mark

Um, whereas Otto will swallow it down and be overwhelmed. Yeah, yeah, yeah. Um, so yeah, the response to Good autism. I mean, dude. Just what you say. You j I just have the autism that makes you feel comfortable, more comfortable.

Jo

Yeah. I have the autism that yeah, you feel all right being around.

Mark

Yeah, that you don't have to make as many accommodations. But, you know, just be aware that in that situation, my daughter is the one making the accommodations, so you don't have to. Yes. That's what you mean. And I would argue, like, you know, that the bad autism. So ridiculous. I would argue that the bad autism is much healthier for the child. Yeah.

Jo

Yeah, because they're externalizing their feelings.

Mark

And they're not being forced to do stuff that they don't want to do. I mean, they will fight tooth and nail to stop that happening, and that's what's perceived as bad, but at least they're advocating for themselves.

Jo

Yes, albeit by throwing chairs at teachers, but hey, you advocate away, son. Proud of you.

Mark

Another sort of umbrella category of ignorant things that people have said is. When they undermine neurodivergency. So they diminish its value sometimes.

Jo

So, for example, I know what you're going to say. I'm already cringing.

Mark

There's a couple, right? The one that by f. Far and away, the most responses I got from listeners of Neuroshambles are the ones along the lines of we're all on the spectrum. So I've got we're all on the spectrum. We're all a little bit on the spectrum, aren't we? We've all got a touch of the tism. Everyone's a little bit on the spectrum. We're all a bit autistic though, aren't we? This one for me is one of the most frustrating because you've really got to steal yourself. To respond in an appropriate way. Because, of course, there are similarities between neurodivergence and neurotypicals, because they're still human. We're not different species.

Jo

And I think it's also it's a comment that by and large is coming from a good place. It's coming from a place of we're all humans, I can, you know, I can accept, understand and love people because we're all the same. Yes. So there's a it's it's well meaning, but it's so

Mark

Flipping. It's just factually incorrect as well.

Jo

Yes.

Mark

Not everybody is neurodivergent, hence the word divergent in that, right? Okay, it's divergent from the typical. Like you say, it's coming from a place of empathy. That they want they don't want you to feel bad, right? Because some very often it's if you if they see you having you know a A rocky time with your child in public. I've had that before. Or if your child is just very obviously different from their child and you sort of explain it, then they might say that. And it's from a place of trying to empathize and To say, well, you know, we're similar, but in doing that, it's so much worse because

Jo

It diminishes, the experience. Sorry, I'm interrupting.

Mark

No, no, no, you're right. Yeah, it completely diminishes the experience that your kids are having. And I think it it's a misunderstanding of the severity of what our kids experience. So there is a grain of truth to what they say, right? And that truth is that if you look at the profile, right? They say that our kids have a spiky profile. Profile, right? And that is that there are lots of different things that all humans experience, but that they find more overwhelming or more triggering than other people. And neurotypicals can also experience a little bit of anxiety around certain things. So they might not like crowds, for example, or they might not like bright lights or loud noises, or they might feel anxious. Or restless, or they might be stuck in their ways and not like change. But crucially, for them, the anxiety will be relatively shallow, and also it will be maybe one or two of these things. It's not loads of them at the same time, and it doesn't completely overwhelm them. Yeah. And I don't know how you explain that to them without going into that level of detail.

Jo

And again, just the the usual caveats.

Mark

Yeah.

Jo

I'm obnoxious. But I tend to say to people, Well, okay, look, I wear glasses. I'm, you know, fifty three. I need glasses now. I would not dream. Of saying to someone who is registered blind, well, we're all a little bit blind, aren't we? You see, I love that. What a great analogy. Because my experience of having to wear glasses is completely different from an actual blind person's experience of navigating the world. So I wouldn't dream So why do people think it's okay to say we're all a little bit autistic?

Mark

Yeah, yeah. And this is one of the ones where you again, as we said in the previous episode, you have to weigh up whether it's worth taking the time to go into all of this analogy. And sometimes I do, like I go into the depth of analogy that I kind of used earlier.

Jo

But sometimes I'm just yes, it's I just say no, no, I mean no, no, I'd never agree with them.

Mark

I'd never agree. I just kind of go, mm mm No, their brain is wired very differently and it's scientifically proven that that their neurotype is separate to neurotypical. But they tend to not want to follow that up then. Because, you know, like, oh, oh, I haven't actually given this any thought, and you definitely have. So I'm just going to shut up. Yeah, I'm just going to shut up. Which, again, end result.

Jo

You've got the end result you wanted. We just both get there different ways.

Mark

So simply just saying, no, we're not all autistic, Sheila. No, let's not want Sheila.

Jo

Oh, Sheila, that Sheila is not welcome in this.

Mark

Sheila was in the last episode. Used as a totem for the frustrating comments that we receive. I think we need to go for a male totem this time. Yeah. Bernard.

Jo

Bernard.

Mark

Okay. No, we're not all Autistic, Bernard. It's a completely different neurotype, which means that their brains are wired differently. There's plenty of research out there if you want to educate yourself more on it. There you go. Just encapsulate it, like, you know, I'm not going to do it because I don't have the spoons burning. But you crack on, dude. Another one that someone sent me is ADHD is just an excuse.

Jo

Oh dear god. Just again, it's an excuse for what, basically.

Mark

Um it's them assuming that because you have a diagnosis you're then using that to justify behavior that crucially that person finds unacceptable. So if you're doing something that they're like, oh, this will not do, but you go, look, you know, I'm autistic. They're like, oh, it's just an excuse. I'm just making excuses. No, it's not an excuse. It's a context, right? I am contextualizing my behavior in a way that you might shift the way you perceive it. Right?

Jo

Yes.

Mark

And this is where the perception of naughtiness comes in, I think, sometimes, where they will say it's an excuse because it's an excuse for naughtiness, right? It's an excuse for behavior that I disagree with. And it's important. to have that diagnosis or that label, as some people say. But it's important to have that so that you can go, oh, right, so they can't help. Needing having excess energy. They can't help not being able to sit down while I lecture them on European health and safety legislation or whatever it is, right? It's the fact they say it's an excuse means they just don't get it.

Jo

No, and they're willfully ignorant. Like you said just now. We live in an age where all of the information ever known to man is available in the palm of our hands, in our phones, and to say it's just an excuse Where's their excuse for not having taken two minutes to just find out? Just Google, you know, how might ADHD be playing into this child's behaviour?

Mark

Yes.

Jo

And it's It's exhausting.

Mark

It is because again it's it sort of falls on you to be the person that educates them and very rarely do we have the time and the effort and the willpower and the patience to do that.

Jo

And again, those analogies with visible disabilities are helpful because when I've been embroiled in many, many, many arguments and discussions with educational settings. I'll often say you wouldn't punish a disabled, a physically disabled child for not using the stairs.

Mark

Look, mate, multiple sclerosis is an excuse.

Jo

You're just using that as an excuse.

Mark

It's your kickoff.

Jo

Again, it's yeah. ADHD isn't an excuse, it's a disability. And for God's sake, Bernard, educate yourself.

Mark

Another little comments I got is, it doesn't define him. Right, so someone said, when talking about my son's ADHD in autism, they said, ah, it doesn't define him. It's like. I mean, it's his fucking neurotype, right? It's his brain. So that's just a neurotypicals way of saying that they, you know, I'm just going to ignore that. Because it doesn't define the way that I relate to him.

Jo

And it really should, Bernard.

Mark

It really, really should. And again, it's about us making excuses for their behaviour. It's the implication that that's just an excuse for the way that they present.

Jo

Yes. And actually I'm gonna me as the neurotic I'm going to focus on those glimmers of behavior that make me feel comfortable, ignore the child's experience, and say, Well, it doesn't define him.

Mark

Yeah.

Jo

Like, what the fuck? I would love.

Mark

for my kids neurodivergency not to define them. Like I I hope we get to a time where we're not having to point out this kid's got ADHD and autism because they're not overwhelmed and they're able to take to to receive the accommodations that they need to be regulated and to kind of function in the society that is is not so inherently geared towards neurotypicals. Yes.

Jo

But we're not there yet.

Mark

So you're not making a point to that degree. I would love it to not define him. But at the moment, it's really important. to highlight that my kids are neurodivergent when other people are having expectations that are unfair and unrealistic. Yes. Maybe that's what you say to Bernard in that.

Jo

See, you're so good. I would just be saying, I'll piss off Bernard.

Mark

Oh, I don't say these things. I go away and I go, Oh, I should have said that.

Jo

Oh, Mark! Should've said that.

Mark

God damn it.

Jo

I'm picturing you standing on street corners nodding wisely, dispensing this wisdom. when I'm stomping away being a little bit sheepish 'cause I've just shouted piss off Bernard.

Mark

I do sometimes say stuff to them, but I d rarely get people sort of saying this stuff to me. And I I do think and I've covered this in a previous episode I don't think I get this as much as a mail.

Jo

Interesting. I don't know why that is.

Mark

Um, but I like the vast majority of people that have emailed in A female to say they've had this, and I was speaking to Kate on the Raise Am I Raising an Asshole episode, who said that she's very often on the receiving end of judgment from other people as a mum. Um, and I th my theory is that because I'm a dad, they just assume I don't know what the fuck I'm doing anyway. And so there's no hope.

Jo

And not only do they make that assumption, but they also. So what we know is that in the patriarchal society in which we live Men are praised to the hilt for doing things that women are just expected to do. So people will see you out with your three Hellions Behaving in a feral manner, and they might think, oh, look at him, isn't that lovely? He's taking the kids Out, he's helping. Is he?

Mark

You know, rather than actually, he's one of them's on top of a bus stop.

Jo

Oh, Disney Marvel.

Mark

The other one's Victor Pensioner's stick.

Jo

And Jay's there with his leather jacket and flick knives.

Mark

Now that is a great dad. He's an he's marvellous.

Jo

But it diminishes you as well, doesn't it? 'Cause it's like, well, no, actually you're their fucking parent. You're not doing yeah, exactly.

Mark

Every parent of neurodivergent kids Should be praised for what we do. Yeah. All the time. That oh, yes, and brought cake and cheese. And occasionally gin. Another ones that people again is this diminishing the their neurodivergency is they're fine Or they'll be fine, or there's nothing wrong with him. Right. So there's that. Like, have you had that before? I've had that, like, you know, from people that I know in my close circle are like, yeah, they're fine. You know, I've just, you know, we had a lovely afternoon with him. He's fine. It's like, firstly, I know he is. He's excellent.

Jo

Yeah.

Mark

Like. I don't really know where it comes from. I think it's just suggests that maybe they maybe we shouldn't worry about them. Because they're going to be okay in the world. I think maybe that's where it comes from.

Jo

Or that we're making a bit of a fuss over nothing and we're silly.

Mark

Yeah.

Jo

So my experience of that was from my parents, who are both dead now, so I can talk with impunity about how fucking unhelpful they were doing. So George was diagnosed when he was three and he couldn't talk. He had some words, but he couldn't really string them together and it was really clear that there was something different. My parents' take on that was, there's nothing wrong with him. I just think, I just think he'll be fine. Maybe it's 'cause you have music on all the time. Maybe that what that yeah, yeah, so just a stream of utter bullshit around he's fine, there's nothing wrong, you're just making a fuss. And then the creme de la resistance was when he finally got diagnosed by Dr. Ann Livesy, who's still around, hugely respected pediatrician, really knows her stuff. My dad said, Well, what you've got to remember, Jol, is these are Brighton doctors.

Mark

Oh, you're shitting me. Really?

Jo

Yet, they're just being right on. Oh my god. Yeah, because this is trendy.

Mark

It's like you're neural emergency being trendy again, these woke doxes. Yes, diagnosing on their feelings rather than scientific rigour. Yes.

Jo

Frighten doctors.

Mark

But there is a lot of this. And I think, again, part of it, this whole like they're fine, is that they partly it's denial. You know, they don't want there to be. They don't want these kids. To be experiencing issues. Partly, it's because, again, back to that, like if they're masking around them and they don't see it, then you know they don't feel comfortable around That's why they're masking and they're not fine because I'll play you a recording of what it sounds like when we get home and close the door. Now tell me they're fine. You hear the sound of breaking glass in the background. Are they fine now? So you know, the response there is that the the I know my kids are fine. My kids are amazing. The problem isn't with them, it's with the fact that society isn't geared towards them. It's not, you know, the problem is with how society is perceiving their behavior. So, this comes down to the difference between the medical model of disability and the social model, right? So, if people are not familiar with these two terms, the medical model of disability is that they are broken. Our kids are broken. because they are not neurotypical. So you're looking at a neurotypical as being the kind of the gold mark standard, and our kids are not behaving like that, so therefore they're defective Rather than the social model of disability, which is that they are in averted commas defective because society is not accommodating what they need. So, like, again, sort of if someone's in a wheelchair, for example, you know, they are disabled because there's not a ramp, right? If there was a ramp, they would not be. Disabled because they'd still be able to get into the building. Exactly. And that is, you know, what our kids experience on a daily basis of then they don't have the accommodations they need to be on a level playing field with everyone else.

Jo

I do think as that period where you are waiting for the diagnosis, it's a really strange period, isn't it? Because As much as you know, yeah, that you know, my child's presenting differently. Also, within yourself, there's a bit of, am I just making this up? Is this me? Is this so? This, my friend Eve. who I love very, very dearly said the funniest thing anyone's ever said to me during that period So, George, as I said, he was three. He was very speech-delayed. And I can't really remember the process. It was a long time ago. But there was lots of toing and froing to speech therapists and to this one and the health visitor. and just being bombarded with yeah, he might all win. And my friend Eve, I was round with her at hers, with George and a newborn Doc, just going, God, this is so hard, mate. I've all these appointments and no one will tell. She went. There'd better be something wrong with him at the end of all this.

Mark

I know exactly what she means though. Because you have that. Yeah.

Jo

Yeah.

Mark

Because if they turn around and go, nah, he's fine. No, he's fine.

Jo

You'd be like, what the fuck was all this? What the fuck was that?

Mark

Yeah. No, I think you're the problem. Have you tried a parenting course?

Jo

So, yeah, God bless Eve and there was something wrong with him at the end of the process, thank goodness.

Mark

I think a lot of parents already know that, but that is yeah, that is hilarious because I think we all secretly feel that, I think, when the diagnosis process goes on like I fucking hope it's this because otherwise I'm out of ideas.

Jo

Yeah and also am I just making this up? Am I just exaggerating? Am I j and I think for women especially because we are constantly told by medical professionals well you know probably just anxiety yeah yeah but yeah you left you you have this sense of am i just you know yeah inventing this But no, we're not. No. There's definitely something wrong with him.

Mark

Another one that someone emailed in was, and I've had this a number of times as well, is, oh, yeah, my kid does that. You know, like when and again, this is diminishing it of like, you know, when your child is doing something absolutely insane in a playground And and then, you know, you're standing there with another parent and they're watching them and trying not to be appalled. And then maybe they catch your eye and you see them and they're like, ah, you know, again, they're just like, it's it's an attempt at solidarity. Oh, my kid though. Yeah, really? Really, your child is not eating sand right now. I don't think your child is the same.

Jo

Yeah. That Your child doesn't even own a leather jacket or a flipknife, so just actually don't come at me with my child does that because no, they don't.

Mark

No, and again, it's it's an attempt at sort of of connection, but it is uh again diminishing what our kids are going through.

Jo

Yeah, and trying to It's similar to the child version of we're all a little bit autistic, isn't it? It's like, oh, my child does that, you know, all kids do that sometimes.

Mark

But also, as a parent of three neurodiverging. Kids who are all very different. I have no idea what other kids do. So it may well be that something that I'm like, that's well neurodiversion. Something that I'm going, that's well autistic. It's like, actually, just no, it's just a kid. They just do that. They just do that. It's like, I have no idea. I don't know. I have nothing to base it on, do I?

Jo

And that's where, yeah, because what we don't have, either of us, and a lot of the families we know. is a baseline for what a norm a normal household looks like.

Mark

So we're just making it up as well. I would love to have like a Almost like a work experience where I just go sit in on a neurotypical household and watch what they do. I'd be amazed. I'd be making notes in the corner. Yeah. My God. He just answered to his name straight away. My God. He just tidied his shoes away. What the fuck?

Jo

Without crying and throwing them at anyone.

Mark

This is unbelievable.

Jo

He just asked if we could do the washing up. What? Sat there and So that parent just set a boundary and it was respected. Doesn't happen. Doesn't happen.

Mark

So I don't know. Maybe your kid does do that. I may maybe I should be listening more. Oh, right. Okay. Well, I can rule that off the list of things that is just definitely autistic then. Who knows?

Jo

Not us, that's for sure.

Mark

Another one, again, this is sort of part of the tough love input that you get: he's just being fussy. He'll eat when he's hungry.

Jo

No, he won't. No, this is particularly jiggering to anyone whose children have sensitivities around food.

Mark

It's like, you don't understand the intensity of feeling around food that they don't like because it's not just Ah, it's not really to my taste. There'll be a texture or a smell or a general unspecified vibe about the food that is causing them Not to just to not fancy it, but to be a hard no. Like this is red flag food.

Jo

Yeah, and they won't eat when they're hungry if their preferred foods aren't available because it's like the equivalent of saying to a neurotypical well look here's a big bowl of dog crap you'll eat it when you're hungry. You'd just be like, I'm not eating that. No. I'd starve to death before I ate that.

Mark

Yeah. So again, it's just that diminishing your kids' condition basically.

Jo

A couple of years ago we went on holiday to Turkey for my sister-in-law's birthday, and it was this gorgeous, all-inclusive place. Mark, we took our own two massive bottles of Heinz tomato ketchup. And then a smaller bottle to decant it in so you could have it available at every meal.

Mark

Lovely.

Jo

Dotty at every meal. And the food was incredible. This amazing mezze Dot ate chips with mine's tomato ketchup dispensed from her own bottle. For every meal. Every meal. At one point the waiter touched her bottle All hell broke loose.

Mark

Oh my god. Back off.

Jo

Don't touch that.

Mark

Like Gollum with the ring.

Jo

So, yeah, the suggestion that they will eat when they're hungry, no. Yeah, you don't have to.

Mark

No, no, he won't. But let's not put this to the test. Just trust me. Yeah, just because they will starve to death right in front of you. And you'll be like, you see, Bernard, you are wrong. Yeah, but I don't want to get to that point just to prove a point. Another big category of some of the ignorant comments that people come out with. Are people who simply don't understand neurodemergency? But they think they do. This is the thing. It's like just throwing. stupid shit out there. And one of the ones I had one of the ones I had multiple entries for was they'll just grow out of it though, right? Yeah. So I had they will grow out of it, he'll grow out of it. Do you think he'll grow out of it? So like four different people entered this and Someone said they spoke to their dad on the phone about the fact that their son was doing well with his readings and his spellings, and his response was, Do you think he's growing out of it? Oh dear go. She's like, no, Dad, he's still autistic.

Jo

Yeah. Like, the clue is in the diagnostic criteria, which is a lifelong condition.

Mark

Is it that and that's the thing, you know, with anyone who feels that they can cure it, it's just no, no, it's not it's a it's a thing. You know, like and some things can be cured, but this is a neurotype. This is the way the brain is wired. That's not going to change. You're not going to like flip their their head open and start

Jo

Fiddle with the wiring until they become neurotypical. A mad scientist.

Mark

Nor should you want to. When he says they are they growing out of it. No, what they might be doing is learning to regulate themselves better or learning to m to request accommodations that will help them reduce their triggers, but they're not going out of it. That's just it's a fundamental part of who they are.

Jo

So, you know just as they're not going to grow out of having brown eyes Yes.

Mark

But that l that comment just highlights the the lack of understanding around neurodivergency that is kind of rife.

Jo

Yeah.

Mark

And the more we talk about it, I guess the the more people will understand that it

Jo

No, no burn out of it. No. Do you think you're gonna b grow out of being an ignorant twat, Bernard? Because that would be great.

Mark

Another one you get, a cracking one that a g loads of people would Emailed in. He doesn't look autistic. What? Have you had what does that look like?

Jo

Exactly.

Mark

How should an autistic look? I don't get I don't understand. Because that really speaks to what their prejudices are. Like they have a preconception of what an autistic person should look like. And as we know. it presents so differently depending on who you are. So it's not going to look one way or the other. The only potential look that I could see someone having And thinking, yeah, they're probably autistic, is if they're wearing Crocs and a onesie. That's the one. It's like, right. I can look at that. Pretty safely assume that that person is aesthetic. That's pretty standard views.

Jo

Especially if it's winter and they're wearing the crocs.

Mark

Yeah. So if I ever see a child in the wild, he's got Crocs and a onesie, and I think that's a fairly safe bet.

Jo

But apart from that, there's no way.

Mark

There's no way of actually telling. So it's a it's a very ignorant comment and Maybe that's as you flip it back on them and go, Oh, so what do you imagine an autistic look like? What's that?

Jo

What is it that you're hoping to see here? This Thomas the Tank engine collection. Here you go. I did once have a girl and love her, she was a bit thick, and she said it was a friend of a friend, quite a young girl, and she looked at George and I could see her like just trying to weigh it up, trying to look at this like seven-year-old who was bouncing off the walls and and she turned to me and went, Jo, is he just a really big toddler? But I couldn't be angry. I couldn't be angry because, as I say, she was just a bit thick.

Mark

I'm just trying to understand what she was looking at.

Jo

Yeah, what am I seeing here?

Mark

Well, you know, it's always better to ask questions than suggest a theory in that situation. Oh, another one that people get and again, this is down to people having a preconception of what autism is, and then meeting a child that does not meet that preconception and then just going, I can't compute, right? Oh, but your son talks and he's so clever. And I had a few of these. Oh, he's autistic, but he can talk. Or the other one is, but he seems intelligent. It's just like, so again, there's this misconception that autism and ADHD are this one thing, this monolithic Presentation that everyone has or they don't have. And if your child doesn't fit into that narrow perception of what this random person thinks neurodivergency is, then they can't be neurodivergent.

Jo

Couldn't possibly be. Yeah, I think it's interesting that everyone thinks they know what autism is and what we know as parents is that very few people, unless they have lived experience, really truly understand what neurodivergence is about. So they'll come at you with these utterly daft Assumptions.

Mark

And that the other thing is that it i again it's sort of almost questioning the diagnosis. Like, are you sure? It's like I mean, you know, a four year waiting list and hundreds of hours of fucking form filling and As

Jo

Several experts confirm that I am sure Doctor's mark. So just bear that in mind.

Mark

Yeah, that is true. They just lit a candle and saw

Jo

Yeah, they wafted some crystals around the room.

Mark

I went, yeah, a hundred percent. Yeah, that one. It is frustrating, but again, it's an opportunity to educate and go, Well, you know, obviously, not all autistics are non-verbal.

Jo

Yeah.

Mark

And, you know, not all autistics are flapping their hands and spinning around.

Jo

And not all people who are non-verbal are non-understanding. Yes. Actually, that child who, you know, your neurotypicals are categorising that child as being. Low functioning spear. He can hear you. He can understand every fucking word you're saying.

Mark

So enough of it, you know that Yeah. Another of these again this these misconceptions is about ADHD. How can she have ADHD? That's for boys. Wow. I mean, like, you know, again, questioning it. I guess. And just like the the confidence with which people proclaim their ignorance is staggering to me sometimes. Because if I don't know something about a thing and s someone's telling me and I have I'd quit I just wouldn't listen. If I'd listen, I'd be I wouldn't be so bold as to go, Well, that can't be true because this I'd go, oh, really? Dumb, tell me more. But this is the thing about these ignorant comments that we get. They're very confidently ignorant. Confidently wrong.

Jo

There's nothing finer than someone who is both confident and wrong.

Mark

Again, it's an opportunity to educate them and go, well, no, obviously, you know, you just set them.

Jo

Well, you could, depending on whether it's me or you, Jack. Yeah, exactly.

Mark

Different approaches, same outcome. And anyone listening, both are valid. Yeah. They're equally as valid, depending on your tolerance symbols. But, you know, just just set them straight and just go, Well, obviously, you know, ADHD is prevalent in boys and girls. It's just that it was only boys that were studied in the early days, so they thought that that's what how it presented. Now we know a lot more about masking and a lot more about how it happens with different people. We know that it's a lot more prevalent than we first thought.

Jo

Yeah.

Mark

Over to you, Bernard, to do your own research.

Jo

I just yeah. I just I think maybe I'm just I've also got fifty three years of listening to man splating under my belt. Yeah, yeah. So maybe that affects your tolerance.

Mark

Oh yeah, of course.

Jo

I've had absolutely everything explained to me my whole life and I just I I just don't have any tolerance for it.

Mark

No, and I can I can totally see.

Jo

The thing I found that really winds them up is if you just look at them and go, Nah you're wrong Sisters, I've discovered the key. Nah, you're wrong.

Mark

Anyway, back to the actual topic of the podcast. Another one that a listener emailed in, and I I had the I think I've had this before, but it was really in the early days. What's wrong with him? You had that one. Like, you know, where they go, you know, our McHesse's autistic. Well, what's wrong with him? It's like, Nothing. That's just it's just it's just who he is. There's nothing wrong with him. Like it's just who he is. What is wrong is that you are Ignorant.

Jo

You see?

Mark

You're coming over to my side.

Jo

Come to the dark side.

Mark

There's nothing wrong with him. Fuck off. Yes.

Jo

There's everything wrong with you. Yay.

Mark

I understand again where this is coming from because they're like, well, he's disabled, but I can't see what's disabled. So tell me what's disabled about him. And again, this is back to the medical model versus the social model of disability of you know, what's wrong with him is that society doesn't accommodate his needs So, what's wrong with him? Society. Yes!

Jo

That's the answer. Oh, that's good. Yeah.

Mark

And then just move on swiftly. The final one, rounding up the misunderstandings of what neurodivergency is, is: oh, your son is autistic. I bet he's a maths genius, isn't he? I love these ones. Oh, dude. Because, you know, it's the old that savante stereotype that your child must be like hyper-gifted at something. Rainman has a fucking lot to answer for, doesn't it?

Jo

I know, I know. We're not going to Vegas, Bernard, especially not on George's talent, which is drawing incredibly detailed penises on birthday cards. I mean, the level of detail is astonishing. Well, any card from George, you can guarantee he'll have drawn a really detailed penis on it. I can't I mean if any listeners have any ideas how we can make money off of that do please let me know because at the minute I'm a bit not going to Vegas on that, George, are we?

Mark

Yeah. This misunderstanding, I think, is prevalent. Again, they are trying to look on the positive side, aren't they? They're trying to go, oh, well, obviously that's Rubbish that they're autistic.

Jo

So there's got to be an upside. Maybe it's this. It's like, no, I mean, you're not sorted.

Mark

Yeah. If my kids could access lessons at school, maybe they would be mass geniuses, but it's not looking likely from what I've seen so far. Yeah, it's it's trying to look on the positives, but from a Place of deep ignorance.

Jo

Exactly. And a lot of it is people are well-meaning, aren't they? That's a well-meaning comment. Oh, is it, you know, what's he brilliant? But it's, it's just. exhausting.

Mark

Yeah, yeah, it really is.

Jo

And they really don't want to see the penis drawings.

Mark

No, you should carry one with you. He's not gifted at maths, but do you want to know what he is gifted at? Look at the veins. I'll sell it if you want. This is how we monetize his gift. One that you touched on a little bit earlier that you get from a lot of people who are ignorant around neurodiversity is the misguided sympathy Element of that, you know, the classic head to one side, and that's a shame, isn't it? And the other one that a few people emailed in was, oh, I don't know how you do it.

Jo

Oh, or I couldn't do that, mate.

Mark

Or how do you cope? is another one. So there's lots of these ones, which is Oh, this one really gets to me because what are my options, dude? What like yeah, what are you suggesting here? Let's follow this to its logical conclusion. Do I just get rid of my child? Do I just abandon him by the side of the road and drive on?

Jo

What is the refund policy on this? Because I seem to have sent one that's not working properly. I'd like to send it back, please.

Mark

I don't know where to start with that comment from them. You know, in because in a way, again, it's probably meant as a compliment. In a weird way of like, you know, that they're acknowledging it's hard and that we are somehow managing to cope. But like they're like, nah, I'm out.

Jo

Like I couldn't do that. It's like that looks really difficult. Me and Doc call them the tilty head people because they always tilt their head to one side. Oh man. And I've had a, oh, you're so patient with them. I mean, sometimes, sometimes I am just screeching, well, you stop it.

Mark

Yeah, it's like you're testing my patience right now, baby.

Jo

Yeah, yeah, yeah. And it's the notion that by saying, Oh, you are marvellous, I couldn't do it, that they've somehow helped, that they've somehow assisted. So how about instead of saying that, they could say, Oh, would you want me to clean your bathroom? Because I can see that you're up to your fucking eyeballs.

Mark

You know, actually do something rather than Yeah, yeah, because it's very much standing on the sidelines.

Jo

Yes.

Mark

Yeah, and sort of from afar going, well, I'm not going to actually fucking help.

Jo

Yeah.

Mark

I'll say, oh, you are marvelous. Yeah. Yeah, I don't know how you do it. You know, and it's like, well, yeah, neither do I sometimes, if I'm being honest, sometimes I have no idea how this ship is not sinking. But it's, but you know what? something is working. So, you know, let's not pay attention to that because otherwise it's all going to come down in pieces.

Jo

Like some parents run a tight ship, I run a pirate ship. There's swearing, drinking and occasional mutiny, but somehow Our ship continues to sail.

Mark

Another sort of equivalent to this is the misguided empathy, right? So it's not misguided sympathy, it's the empathy. And this is where someone tries to empathize with you by going, Well, my brother's cleaner son-in-law has a neighbor whose grandson is autistic. Stick, so I completely understand.

Jo

I really do get it, yeah.

Mark

No, you fucking don't. You have no idea, like you have not a clue unless you've been in the trenches. With anybody who's neurodivergent. You know, you might think you know from anecdotal evidence, but unless you have lived our experience. Not even necessarily experienced with just that presentation of autism, right? Because this is the thing, like neurodivergency as a whole presents in so many different ways I don't feel like I need to experience exactly that type of neurodivergency to be able to understand because So much of what surrounds it, the social isolation and the exhaustion and the frustration and the stupid comments like this one, right? That's universal. Doesn't matter what flavor of neurodivergency. If you don't have any of that experience, then it's a different world, isn't it?

Jo

Yeah, you really haven't. And that's why the camaraderie of other parents in the same boat is So, so important. Just that being around people who get it, who are not going to suggest a whackadoodle cure or diet, or have you tried a routine, but who are just going to sit down next to you and go. Yeah, it is a bit shit sometimes, isn't it? Yeah, yeah, that's all it needs, right? That's more helpful, isn't it?

Mark

Another one that we got quite a lot of people emailing in about. was, but everyone I know is just like me and I can't possibly be autistic. But I do that and I'm not autistic.

Jo

It's like you just side eye them going about that.

Mark

I mean, I'm glad you brought it up before me. But you might want to just, you know, because not everyone is ready to hear. You know, no, exactly. But a good response to that one. Well, I do that, and I'm not autistic. You just go, prove it. And then you whip out an autism assessment test. And go, just fill these up because they are like online. You could do it pretty quickly, right? I go, yeah, okay, well, let's see. I'm interested. Put your money where your mouth is, Bernard. If you look at it from their perspective, right, they're seeing your kids' behaviour and they are 100% convinced that they're neurotypical because they've never questioned it. So they look at your kid's behaviour and go, Well, that's the same as me.

Jo

Yeah.

Mark

Instead of questioning their neurotype, they diminish your child's neurotype because it's so ingrained in them, isn't it?

Jo

Yeah, and there must be some. so many adults walking around for whom it has never crossed their mind to come on to their radar that actually there's a reason.

Mark

There's been a huge spike in the late diagnosed neurodivergence because they've seen these behaviours in their children and recognised it in themselves. And then going, oh, hang on a minute. I would say most of the guests that I've spoken to on Neuroshambles have had similar experiences. Most of the guests I've spoken to on Neuroshambles are neurodivergent. Way, I think, and have reached that understanding from looking at their kids and going, ah.

Jo

And do you think? that that is more true for women and AFAB people who it would never have crossed their minds that they might be autistic because the definition of Autistic was very narrowly based on boys and the male presentation.

Mark

And also, you know, and it's sticky ground sort of lumping this in with with gender, but there is a female, a more female presentation of autism, which is more masking, more high masking. Definitely. And again, that's another episode that I will get into.

Jo

That's a big old episode. There are some really clever people researching that, that there's actually rather than autism, there's autisms and there's different Phenotypes, phenotypes, and completely different presentations, which is why that female presentation has been missed.

Mark

But they're much cleverer than me. Yeah, so it's interesting. I like the the the best response to that is like prove it and then whip out trove it just whip out a test so now you're telling me that I have to have a

Jo

Test with me at all times one of George's penis pictures. Anything else I need to be carrying?

Mark

Hang on a minute. You can just get it out get it up on your phone. Go, let me text you, save it in your phone, let me text you, just fill this out. I mean, I'm curious now. Because, you know, obviously, I don't think You're autistic.

Jo

Oh, no.

Mark

No, I mean, I, if someone, this is the thing: I am pretty convinced that I can spot neurodivergent people there. Out from a fucking mile off. And a lot of the time, I've had it quite a lot recently where someone has come up to me and said, I think I might be neurodivergent. My mate said this to me recently. She phoned me and went, I think I might have ADHD. And I assumed that she knew. Yeah, I knew. So I went, oh, oh, you're fucking riddled with it.

Jo

Fucking riddled with it.

Mark

And fortunately, she found it funny and was okay with that. I should have been a little, I should have been a bit more, you know. Oh, well, it's interesting you say that because maybe no, I mean, it's a good friend, so I could I could say that. But yeah, I think I get I've said it a few times.

Jo

It's like, yeah, you definitely are. Oh, you do, yeah.

Mark

Yeah. Yeah.

Jo

Yeah, that's okay. And I think there is an awkwardness at times that comes from so we you and I and lots of the listeners, I suspect, are very positive about neurodivergence. We don't see it as being less than, we see it as being different. So when someone says, Oh, I think I might be, it doesn't cross my mind to be subtle.

Mark

I just go, Yeah, of course you fucking are.

Jo

What?

Mark

Yeah, get on board. Yeah, absolutely. Because to some people it's seen as a bit of a death sentence, isn't it?

Jo

I'm aurodivergent. It's like I've gotism.

Mark

Well, on the positive side, you're good at maths. See?

Jo

It's not all doom and glue.

Mark

We're going to round off this section by looking at what I've. defined as the completely batshit mental steers that people have said. Because I had a few where they don't fit into any category at all. One of them was actually from your own daughter.

Jo

My girl.

Mark

Right. She sent a message saying. A favourite of mine was when I was about fourteen, a girl at my school told me I should smoke weed to lower my autism. She actually used the word lower.

Jo

Lower. Just like it will lower your autism, yeah?

Mark

Well, I mean, I think she's confusing autism for Parkinson's disease.

Jo

But I mean, to be honest. And again, it's a whole other discussion, but for some people, smoking weed might reduce their anxiety, which might, but yeah, no, suffice it to say. we did not dash out and buy a load of wheat on the basis of that grand advice. And the girl later got excluded from School for bringing a knife in, so we never got to follow up on.

Mark

So she had the bad autism then.

Jo

She had the bad autism. I don't even know if she was autistic.

Mark

I've got a feeling.

Jo

She knew she had an aunt's friend's cousin who was autistic and had said weed.

Mark

That was a very interesting thing because I can't see it working. I mean, they might have some positives. It might mean they'd eat more. I mean, that's a positive potential. But I definitely can't see it improving social communication. I mean, they're struggling as it is to have a balanced conversation with someone. So that's definitely not going to help. But there is, I think, this inherent problem with thinking that autism can be lowered, I guess. You know, just lower your can you just lower your just turn your autism down a bit?

Jo

Yeah.

Mark

Dial it down, I guess. I don't know. It's um It can reduce some of the symptoms, I guess. Yes. Like you're saying. So some of the anxiety potentially, but it's not, it's a slippery slope, isn't it?

Jo

Don't it? Don't say that it's a really bad idea.

Mark

Yeah. So another one of the completely mental ones was autism is a cult. What? A cult? Someone's obviously had enough of all this autism bullshit. I'll tell you what it is. This is Bernard speaking. I'll tell you what it is, love. It's a cult, which is. Frankly, insane of like, who's the cult leader?

Jo

When are we going to do it? Chris Packham.

Mark

If Chris Packham is the leader, he's the leader, and everyone else is just following behind the Packham. Like, it. If you look at what the definition of a of a cult is, autism doesn't follow any of those patterns. A cult would imply some kind of homogeny of thoughts, right? Some alignment of thinking along the same lines. A desire to move with the herd.

Jo

That is not like any neurodivergent I have ever met in my life. We are the opposite of cults.

Mark

I genuinely believe that autistics are the least likely to be involved in a cult if you think about it, because. they tend to see through the bullshit. They need proof. They question everything. Yeah. So they've got no inbuilt desire to blend in with what other People with me. Can you imagine getting a bunch of artistics together and encouraging them to drink the same Kool-Aid? It wouldn't happen.

Jo

There'd be at least one going, This is green. I cannot drink anything green. I need I specifically said I need red.

Mark

Jay would be like, This is too sweet. Nah, you know. Chris Packer would go, drink it up, Jay.

Jo

Drink it up. What if Chris Packer Packham hears this and he knows we're on to him. Yeah, Packham, we've got your number. We've got your number. Trying to start a cult.

Mark

The final one in the batch at Mental One. There's a lot. There's a lot to unpack here. But here it is. Just verbatim in all its glory. My narcissist Biological dad told me he had a master's degree in autism and that he had cured 200 autistic kids, so I should just let him handle my son. Needless to say, he doesn't have any master's degrees. He doesn't even know 200 autistic people, and we don't talk to him anymore. Oh my god! It was like that. It was just beautiful. It was the kind of thing that you just let it wash over you.

Jo

You can't respond to that because there's just so much batshittery chains.

Mark

within that one statement, where would you even begin to unpick it and respond? Like the dad does not need to be concerning themselves with his son's issues. He's got bigger fish to fry with his own shit going on.

Jo

Maybe he's a cult leader. Has Alison thought about that? Maybe this is some kind of autistic cult that their bio dad has.

Mark

quietly formed and started curing people.

Jo

We don't know. We don't know, Mark, is what I'm saying.

Mark

I would say that anyone who believes they can cure autism and is trying to convince you to let him test his theories on your child. can fuck rock off.

Jo

They can get in the fucking sea.

Mark

But it sounds like a listener is a step ahead of us 'cause we do we don't talk to him anymore. Just a final sentence.

Jo

I think that's a very sensible choice.

SECTION INTRO

Neurodiversity champions.

Mark

So I think we covered the positives in the last episode. So I don't think we need to go further into that. But let's look at neurodiversity champions. Because there's always there's always some people or some organizations that are fully deserving of a shout out for the wonderful work they do in the world of neurodivergency. Have you got any for us, Jo?

Jo

Oh, I do, I do, I do. So, um last week for my sins, as we say, I took eighteen. Autistic kids aged between 10. Did I? So good. So, Bowls Outdoor Centre, you are incredible. That is. what inclusion looks like. They made s so many adjustments. They went above and beyond What inclusivity looks like for certainly the kids I had with me is flexibility. Just that ability to say Alright, yeah, that was the plan. We won't do that now. We'll do this, because I can see that these kids are struggling. So, bowls outdoors and you bat idiot out for you.

Mark

Amazing. That's great, because getting eighteen different neurodivergent humans aligned in anything is is gonna be tricky. So if you even half manage to to do that then that's a good thing.

Jo

I came back with the exact same number of kids I arrived with, which is quite the achievement. Quite the achievement there.

Mark

Awesome. I'll put a link to them in the show notes if you can. Oh, yeah, do. It's a fast it.

Jo

It was near Tunbridge Wells and just yeah, incredible place. Highly, highly recommended.

Mark

Okay, well if anyone else wants to get involved, I'll put the link in the The show notes.

SECTION INTRO

Tiny Epic Wins

Mark

Okay, it's tiny epic winds time. These are the moments that in our neurodivergent families are seen. As massive wins when to a neurotypical, no big deal. Have you got any tiny epic wins? Oh, okay. I got Quite a fun one. I had a barbecue recently with Jay Jay's friend, who he's known all his life. And she came over with her parents, who were very good friends of ours. And I was at the barbeque. I was on the grill. And I oh, yeah, I had to. I'm not letting my kids do it, let's face it. No, and I'm a solo parenting, so I've got my options. Fair enough. So I but I overheard Jay Talking to my to his friend's mum, Sophie, who's wonderful. And he walked up to her, and it was almost. Like he was attempting a neurotypical conversation. Like he'd been studying and he was testing it out. You know, when When you're practicing a new language, and then you have this stock question and then you test it out. It was like that, because I overheard him approach Sophie and he went, Sophie. Remind me what you do in your job again.

Jo

Oh, well, that's so precious.

Mark

Have you ever known Jay to ask you a question in all of this time, right? So it was almost like he'd he'd He was gonna, he wanted to test it out, and I heard it. Oh, I nearly dropped my bangers. Were you delighted? Just waiting for the like, what's he gonna say next? I was So I sort of stopped and I turned and I sort of like earwigged and I listened in a little bit. And so Sophie told him she works in the NHS And then he had a follow-up question, right? So he said, oh, what does the NHS stand for?

Jo

Really good question.

Mark

And then Sophie said. I think he knew the answer because then he had some points lined up about the USA not having free healthcare. So I don't know if it was genuinely something that he sort of planned out. I'm really intrigued. It was so out of the blue. But he then said, Oh, well, you basically have to be a millionaire to receive decent health care in America. So he was like making a political point as well. I don't know what went on in that brief moment. He's not shown any attempts to ask me a question about stuff since.

Jo

Or anyone else.

Mark

But for that little pocket in time, it was almost like he was testing something out.

Jo

He was doing a social experiment to see how it felt.

Mark

And it was fascinating.

Jo

And it sounds like he was successful as well.

Mark

Probably Sophie.

Jo

Yeah. But just and having that little. Bit of success in, like, oh, yeah, I can conversate, I've got this.

Mark

That's incredible for Jay as well, isn't it? Yeah, and Sophie loved it. She was charming and funny, and you know, so I mean, Sophie already knows him. She's known him his whole life, so she gets on really well with him, which is lovely. But it was uh, I'm counting that as a tiny epic win. He asked someone a question: What the flip? What the flip moments now? We have I've got a couple this week, and these are ones that happened in the last week. And one of them was that I made chouros with for the kids. I decided, you know, we weren't leaving the house. I was like, well, let's do something in the house. Let's make churos. I love a churro. I thought what exactly. What can go wrong, right? So and they are, just for the record, a real fucking foul. A lot of work involved. And I don't think the FAF to reward ratio was high enough. As evidenced by Jay's response, right? When I said, How are the Turos, Jay? And he went The churos suck. That was his opener. Right. And then he went, They have the texture of a worm. Maybe a maggot.

Jo

How does he know what texture a worm or a maggot might have? Maybe a maggot.

Mark

I'm not, you know, I'm not falling on either side of the fence here. But either way. It's not an endorsement of my child race. I think it's the thing it says. I mean, I ate them and they seem fine. Yeah.

Jo

His choice, his loss. I love books.

Mark

Yeah, I just like you've got Okay, thanks for your input.

Jo

I'll feed it back to the chef who's just spent two hours making this really fiddly flipping recipe for you to Yeah, great.

Mark

Turn your nose up at. And then the only other one is from India this this week where I think we were trying to we were trying to mobilize to get out of the house. I think we were going swimming or something. And She'd got her onesie on already. And I was like, right, can you get your shoes on now, please? We need to go. And she went, I've done one thing, you asked. What makes you think I'd do another thing? What? What gives you the impression that this is compliance right now? I don't know what I was thinking, India. No idea.

Jo

She makes a compelling point, Mark. She had done one thing.

Mark

What makes you think of all of your experiences of me, what makes you think that I'm going to do two things in a row? Yeah.

Jo

Fair enough.

Mark

Well, just go just get into the car without your shoes. I'll bring them with me.

Jo

That's how you deal with this now, isn't it?

Mark

It's like, okay.

Jo

Fair point. Okay. P D A is a wonderful title. It's a joy.

Mark

It's a joy. Okay, so that is it for this double whammy of tackling ignorance. Part two is now vanquished. And Jo, thank you so much. It's been so fun to just unpick all of this with you.

Jo

It has been marvellous. I've been doing it. It's been really fun.

Mark

So, thank you to you, Jo, and also. Obviously, to the listeners for emailing stuff in and putting messages in the socials to give us lots of things to talk about. I might do this kind of thing again, not on tackling ignorance, but I just like I'm. The listeners are an untapped resource here of the crazy shit that they're all dealing with. So I think, you know, I mean, we're sort of coming towards the end of season two of Neuroshambles, but for season three, which I'm gonna going to be planning in the summer. I think there's definitely going to be more opportunity to reach out for people to suggest their things. So look out for that in season three because I've really enjoyed this. If you want to email any of your comments or your thoughts, then you can email me at hello at neuroshambles. com or you can contact me via the socials on Instagram or Facebook or Threads or TikTok, but I think that's it for now. All that remains for me to say Is have a nice life.