Being a neurodivergent parent of neurodivergent kids: LIVE | Lisa Lloyd

TRANSCRIPT

Mark

Hello and welcome to episode 62 of Neuroshambles, which is the first ever live recording of an episode. Genuinely exciting. For me, perhaps only. The audience completely... [applause]

There we go! I'm really sorry that I kind of appealed to you for that because if anyone's got any auditory sensitivity at the moment, I've just triggered you and I apologise. So yes, this is the first ever live recording.

I will warn you, the fact that it is live means that it's going to be really hard for me to edit together like I do with the normal ones. So this is going to be released pretty much as it is. As a result, it's going to be a bit rough around the edges, like many of our households.

But if you could accommodate that, I think you're going to enjoy it. So sit back, strap in, and enjoy the shambles.

SECTION INTRO

Meet the guest.

Mark

So this week's guest is someone who has been a genuine inspiration to me since Neuroshambles was a germ of an idea in my frazzled brain. At the time, Tam and I were very early on in our diagnosis journey with Jay, and to be honest, I was in a bit of a low place and desperately looking for content about parenting neurodivergent kids that didn't take itself really seriously or make me feel like I was doing everything wrong.

So then I stumbled across the asd_with_a_g_and_t account on the socials. Which shone a very bright light onto how ridiculous our lives are and gave me permission to laugh about it, which I think is the most important thing, and that's what I needed at that time. So not only is she a prolific creator of hilarious content, she's also a campaigner, an advocate, now a two-time published author.

I am delighted to be able to welcome her back. It's Lisa Lloyd!

Lisa

Thank you for having me back. I wasn't sure if you were ever going to have me back again.

And being a live one, I'm a little bit worried I'm going to get cancelled after this. Like, there's no edits. Oh, my God.

Mark

Yeah, no, it's it's it's fine. So we did a an episode in season two and I've been trying to get you back ever since. At one point, we booked it in.

Lisa

You had Terry back.

Mark

Well no, you just pushed him forward and went, "You do it, Terry". So I had Terry but but you're back now. And so we had never met in person.

Over all this time, and it's the weird thing about recording a podcast is that you spend so much time face to face with someone talking about quite intimate and personal things about your life. That when you meet them in person, it's really weird and it's really lovely. And then I went to Lisa's book launch on Tuesday, and here we are again.

Literally this week. It's like buses.

Lisa

We've been seeing each other twice in one week.

Mark

But it's lovely to have you back. There was also a thing at the book launch when I said it's the 62nd episode and you panicked. Do you remember?

Lisa

Yes, because I heard that as it's going to be 60 seconds. I was like. How are we going to do this? I've got so much to say It's going to be so far off 60 seconds

Mark

Yes, it is episode 62. Just to clarify, we're not doing it in 60 seconds by speedrunning neuroshambles. I don't think that's what anyone came here for.

So, yes, we've got a lot to talk about, so it's definitely going to be longer than that. Now. Before we launch into it, I do need to ask you about the setup in your household, so everyone's aware of what neurodivergencies are at play there.

Talk us through it.

Lisa

Well So I've got two children, Poppy and Fin. Both autistic, both very different. Fin...  trying to say it very quickly, but Fin is a rule follower. Fun police we call him and and constantly tells me off and and then poppy has got... well, we believe she has PDA So, obviously, the rules don't apply to her.

Mark

When you say "you believe"...

Lisa

Apparently, it doesn't exist in Kent. You can't get diagnosed with it. It's amazing KCC one again.

They're like, we just don't recognise it, so what it doesn't exist. Yeah. So, yeah, we all know she has it, but it's just not official.

Yeah. And yeah, I was diagnosed last year. As autistic, but pretty sure they've got ADHD as well.

Mark

I mean if you need my input, you're definitely ADHD.

Lisa

And yeah, and I think and to be honest, I think my dog is autistic as well. And I'm being serious with this. Like, he really is.

He doesn't like other dogs. Anyway, that's a whole different episode. We should do one about all.

Mark

I'm going to do one about pets in season four.

Lisa

Please do.

Mark

I have, yeah.

Lisa

I've got not enough people talk about it.

Mark

Yeah, I've got a guest already. Sorry.

Lisa

Could it interview Frankie?

Mark

Your dog?

Lisa

Yes.

Mark

Okay. We'll work that out nearer the time. Doesn't make for a great interview then, does it, Lisa?

Lisa

He doesn't bark. Anyway.

Mark

Okay, we're going to crack on because... yeah,

Lisa

I told you I'd be cancelled tonight.

Mark

That's not me cancelling you, that's just me keeping things moving.

SECTION INTRO

What's the topic of the week?

Mark

Okay, so this week's topic of the week is one of those ones that's actually quite tricky for me because it's not one that I've got a direct lived experience of. However, it is also one that I've had multiple requests from listeners about.

So when Lisa agreed to come and do Neuroshambles Live, I knew she'd be the best person to talk us through this. We are going to be talking about the unique challenges posed by raising neurodivergent kids when you are neurodivergent yourself. Okay.

Don't look at me like that.

Lisa

I don't know if everybody knows Mark here. He seems to think he's neurotypical.

I'm not sure.

Mark

For the purposes of this, because you're not the first person to have said that, I am an undiagnosed neurotypical and that is how I identify. But I am like, I've got a live audience here, which is genuinely exciting because normally it's just me in my bedroom. So I'm interested

in how many of my audience identify as neurotypical? Whether you're diagnosed... sorry, neurodivergent, whether you are diagnosed or whether you sort of look at yourself and go, Yeah, there's something there. Could you just raise your hand if you say quite a lot of so just for the listeners who couldn't make it, I'd say about sixty percent of the room, something like that, and probably more than that because I'm sure there's one or two PDAers in here.

Lisa

Refusing to put up their hand

Mark

Um so you know that's This is an episode that I think is going to resonate with a lot of people. Obviously, myself, I've witnessed neurodivergent on neurodivergent parenting up close with Tam in our household, who is late diagnosed. Audhd themselves, but I haven't had that experience first hand.

So I'm looking forward to discussing it with Lisa because, as it happens, that is exactly what is featured in your new book. Unmasking Mum. I don't know if anyone has read it or heard about it, but that is Lisa's new book about being a neurodivergent parent of neurodivergents.

So I thought I'd start with... I'm interested in when you became aware that... because a lot of parents of neurodivergent kids who then are late diagnosed neurodivergent, find out from understanding their kids' needs and then going, oh, hang on a second, I thought that was normal, but actually, that's just my neurotype.

When it... when you... I'm interested in whether that was like a slow dawning realization. or whether there was like a moment where you're dressed in a onesie and crocs and you just go... "Oh fuck".

Was it a light bulb moment?

Lisa

It no, no, it it was a slow burner, I'd say, to be honest. And like you said, it is from seeing my kids. And to be honest, it was with my husband because a lot of the time he wasn't understanding Like Fin's meltdowns and things, and I was. And I was like, I get that. I'd be having a meltdown about that.

Mark

So you're like the Fin Whisperer.

Lisa

Yes. And it was like, I get why he's Freaking out. It's like that would freak me out. And so we were sort of arguing a little bit back and forth, to be honest, because his tolerance was not. Not brilliant.

Mark

Yeah, I mean, I've been on his side before, and it's tough when you don't know what's going on.

Lisa

Yeah, and it was that, and I was sort of the one more so making the adaptions and things like that because I understood it more. So I was looking at and I say more Fin in particular actually more than P oppy. Though Terry would probably disagree and say there's some PDA with me as well.

Mark

Not in Kent, Lisa. Not in Kent.

Lisa

No, not in Kent. But um but yeah, with Fin, I mean the social side and I I always say with with my kids they're I mean, I call them the SEN-betweeners because they sort of I feel like they don't fit anywhere.

They're like, you know, they're not sort of complex needs enough for full blown SEN school, but also can't cope with mainstream. So I call them the sort of Of in between children, and that is what I was like growing up. And I think now he would have been diagnosed with Aspergers.

or something, if that was still a diagnosis. Because it was all the social side that was the problems with him. And that's what I had growing up.

But it was always put down to me being an only child, being shy, daydreamy and all of that. And I think when the kids come along, you sort of see that... well, you you compare because you you have to.

Mark

You compare what to other kids?

Lisa

Yeah.

Mark

Yeah.

Lisa

You have to because you're looking at milestones, you're looking at how they behave.

Mark

But you don't compare yourself to other parents. Going, hey, how come they've got friends in the playground?

Lisa

Well, yeah, and that's what started happening. But it's true. I was like and I was like, what I call them all the clicky mums and it was like I don't fit in with them. Why do I not fit in with them? Nobody likes me.

Mark

But yeah, turns out you're just neurodivergent and they're not your tribe. Okay, we'll get on to the social side of things in a little bit. One of the questions I had was like.... have you told your kids about your diagnosis?

Lisa

Well, yes. I mean, Fin was like. Yeah, I knew.

That was not news to him at all. And Poppy is actually... She's... I'm sorry, because there are neurotypicals here, but she's saying, oh, you're not a boring one there. Okay.

So she thinks all neurotypicals are quite boring.

Mark

I like that. That's really nice. 'Cause it's a positive thing, right? It's a really it's a it's a really positive thing that that it's not seen as this negative thing.

Lisa

I mean that that is obviously the way that we want them to be proud of it and not anything to be ashamed of. I have never sort of told them it's a superpower and things though, because my kids are very literal.

And they'd be like, jumping off the building and be like, why am I not invisible?

No, this is a shit superpower. I just hate people. It's rubbish.

What can I do with this?

Mark

So I was just wondering if you feel like in any way, because I've been talking I was talking to Tam about this beforehand because obviously. term is neurodivergent parent of neurodivergent kids.

And they feel like it's brought them closer to the kids, their diagnosis, their shared diagnosis, which I think is quite interesting.

And I really like it because there's definitely this kind of shared identity in our house that I don't share. I'm an outcast in my house.

Genuinely, I said to Jay once: what makes you think I'm not autistic?

And he went, "Because you're weird". Okay, fine.

But they do have this shared thing where they talk about things that give them the ick.

a lot as well. So they go like, Oh yeah, like the cold side of the pillow is a massive thing for Tam and Otto and which means nothing to me. And the right shape of bowl, like, and they got they've all got their own like favorite cutlery and I'm just left out of those conversations.

But I think it's really nice. But do you feel like you that you've kind of become that you've got a a closer bond because you share a neurotype?

Lisa

Yeah, I definitely think we're so. And I think l like you said, I think it's just because you sort of get each other and it's like I mean you know sometimes I I've even used their diagnosis to leave places.

Because I don't want to be there.

Mark

I mean, I do that. Yeah, it's fine.

Lisa

I'm like, they're going to have a meltdown. And everybody's like, they look fine. I'm like, no, it's coming.

It's coming, I tell you. And they're begging to stay. And I'm like, no, we're going.

Mark

So what I thought I would do for this episode is to look at parenting through a neurodivergent lens, right? Because obviously, parenting is fucking hard. Just in general, right?

Parenting neurodivergent kids is obviously harder, but parenting neurodivergent kids as a neurodivergent is like end of level boss hard I'm sure. So, I want to pull apart some of the particular neurodivergent traits that make it more difficult for you as a... you know, for all parents. And then see kind of just to what extent they cause you fun times.

Lisa

Where do you want to start for it? Because we could go from birth.

Mark

Well, I'm gonna I'm gonna focus... 'cause we really don't have time for that. Oh, okay. But I'm gonna go trait by trait, okay.

'cause I think one of the the biggest ones probably for a lot of parents are neurodivergent. kids, um, is sensory sensitivity. It's a big... it's a biggy in our household.

Loud noises and chaotic environments are not for the neurodivergent community, right? But our households are the most chaotic and the most noisy households If you've ever had a stray neurotypical family wander into your home and then just like you see the shell shock as they're shepherded out of the door again, right?

It's not for the faint-hearted. So and that's hard for me, but I don't have those sensory sensitivities. So how is it for you?

Lisa

Well, again, that is what that is one of the things that led to me getting a diagnosis. 'Cause I was like, I'm so triggered by my own kids. I don't know if that's a normal part of parenting.

Why are they triggering me so much? But it it like you said, it's the noise and everything. And the thing is, I think.

Before you have kids, you're in your own... you can hide away. But you can't do that with your own children.

Mark

They find you, don't they?

Lisa

They find you every time. And it's like, like you said, the noise and their, you know, and their own meltdowns and things like that is very triggering. Their crying.

All of that. And that really I mean, in the beginning, that led to like real severe postnatal depression and things with me, because I'd literally could not cope. And that's when I, well, I use the kids' ear defenders.

I'd use them all the time.

Mark

When they need them?

Lisa

Yeah, no, no, I don't snatch them off of them.

Mark

Mine need's greater than yours, kids.

Lisa

Just punch them in the face and snatch their ear defenders.

No, when they're you know, when they're being too noisy, I will go and get them. And that they they're really helpful.

Mark

That's something that Tam started doing.

Lisa

Yeah.

Mark

Was wearing noise-cancelling headphones and sunglasses.

Like they're trying to be anonymous in the house. I don't know who the fuck this person tidying up is. They're very good, they can stay.

Lisa

Just hide in one of the plants in disguise as that.

Mark

But the flip side of that is that like you can't... like our kids need to make noise like it's a need it's not a desire. They need to stim or to regulate or to climb on shit or to just make really weird noises

Lisa

Yeah.

Mark

Mine do anyway, certainly.

Lisa

The vocal stimming

Mark

And it's important for them to be able to get it all out. I want them to be unmasked in our home. But when that triggers you, that's really a tricky thing to deal with.

Lisa

Yeah.

Mark

So do you just sort of take yourself off?

Lisa

Well, yeah, as much as you can do

Mark

Weeks at a time.

Lisa

Yeah. That's why I agreed to come on tonight. I wouldn't have come otherwise, it's just to get away from the kids.

Yeah, it's like and that is the thing. You've got Terry then walking into that environment where we're all having a meltdown and he gets in from work and it's like I'm hiding in the bath, because the kids trigger each other as well, so they're both screaming in different rooms, and he's just trying to stop us all from screaming.

Mark

Which one does he help first? Which one do you really love, Terry? Pick a team.

It must be a nightmare for him.

Lisa

It is.

Mark

But it's like everyone in our household has different sensory sensitivities.

Like Tam had this discussion with all of them, and they just worked out. that like Tam is really sensitive to touch and Jay is really sensitive to taste, especially if you put any kind of wrong herb in his food. He'll spot it immediately.

India is really sensitive to smell, and Otto is really sensitive to noise, which is like a really shit team of superheroes.

Lisa

Isn't it?

Mark

That is the Stimcredibles.

Lisa

But it and   what I have as well, the sensitivity to touch. And that's another thing, is I you know, you as a parent you're like used as like a climbing frame all the time and things. So it's like, please stop touching me. And I don't like cuddles and things like that, which is a really weird thing to say, but it's like I've never been a cuddly

Mark

Yeah.

Lisa

Person, whereas, and Poppy wants to like squeeze you all the time.

Mark

You can't just push her away, right?

Lisa

No, no.

Mark

And is she's old enough to for you to explain. That's not that's not my vibe.

Lisa

And I'd just try and distract her. I'd throw chocolate at the other side of the room and then run. She'd just run over there.

Mark

No, this is a thing like Otto's like this as well, because Otto has zero concept of personal space. So he's really close all the time and it's lovely and I love him to bits. But especially when it's hot. In this hot weather is like dude, you're literally sticking to me.

This is wrong.

Lisa

Awful.

Mark

Yes, but I don't again, I don't have that.

I'm not triggered by it. I'm just annoyed by it. This is like a different level.

Lisa

Yeah.

Mark

Was there like a look when I looked down at my notes then?

So, okay, another of the neurodivergent traits I wanted to look at, which is quite difficult to to cope with, certainly with my kids, is changes in plans.

Because again like we all try and make plans, but with our kids, they can change in a moment. At a moment's notice. So how... are you somebody that needs that sort of that that that plan, that clear plan?

Lisa

I yes. I I like to plan ahead and I'm like any time I'd like an interview or anything like that, I will go to the place several times before it. Try and find the parking and all like you yesterday emailing me, you didn't put about the parking. And I was like, dude, that's horrific.

And I was like, where do I park? Like, then what does it look like? You didn't send me social stories or anything. I was like "I don't know what this place looks like"

Mark

I'm so sorry. I thought I was neuroaffirming. I'm really not am I?

Lisa

Really ableist. Really ableist.

Mark

I did send you a choice of two though after that.

Lisa

After that, but it...

Mark

The damage was done.

Lisa

Yeah, it was. But yeah, and that the thing is, the change of plans. And like you said, that happens quite often, and you can't do anything about it, and it's like that can throw off our whole day and it's like and that tiny little thing in the morning would then ruin the whole rest of the day.

And it this has been the case quite a lot of times when I've planned like us to go on a day out or something and then I don't know, we've got there and it's closed or something like that, and then I can't get out of that mood for the whole day. Whereas Terry would just be like, Well, it's fine, we'll just go to another place.

And I'm like... this is a write-off, this is ruined.

Mark

And how are the kids about that?

Lisa

They're the same.

Mark

Yeah, okay.

Lisa

So we're all miserable.

Mark

I just want to do something.

Lisa

Yeah. Do you all have to get back in the car and go home? And go home, usually. It's like, that's it, it's done.

Mark

Yeah, which is.

Lisa

But again, that's where we can all connect, which is quite good. Apart from Terry.

Mark

Well, yeah, you're going.. "Dad's a prick, isn't he?"

"Yes, he is, kids. Yeah."

Lisa

Yeah, we all get it here.

Mark

'Cause there was a story in your book that you told about going to a farm with um with Poppy and Fin.

Lisa

And I can't ever remember this.

Mark

Let me read it to you. No, I'm not going to read it to you. But there's a bit where basically Poppy was loving it and Fin had a meltdown and you had to change plans. But part of you was like, well, the plan is that we stay here. And Fin is just like banging his head against the floor. See, I read it.

Lisa

Thank you. My one reader.

Mark

But you have to make a decision in that moment. And one of the facets of that decision-making is You being overwhelmed and you wanting to stick to the plan. Yeah.

Lisa

But that's the problem with it because you've got to put your kids' needs above yours.

Mark

Yeah.

Lisa

Which is really tricky when you're neurodivergent. And it's like, and then when you've got two kids with different needs as well, that's the thing I find that I'm torn quite often because one wants to go out, one wants to stay in, one wants to go there, the other wants to go there, and it's like... what do you do?

Mark

It's a nightmare, isn't it?

Lisa

Yeah.

Mark

Yeah.

Lisa

That's it. No advice tonight to anyone, by the way. Just recognising that it's shit.

Mark

That's not what these people are here for.

Just recognition, I think, is enough for this. That whole planning thing, because I as you know, I just make shit up as I go along, tend to. Like, I don't tend to plan a lot.

I know that Tam needs to plan a lot of different things in advance. And I was talking to them about this, and I said, like, don't you have days where you just don't really have any plans?

And the the response was so wonderfully neurodivergent, Tam said... "Sometimes I plan not to have a plan"

Oh Right. There's a day in the calendar for not having a plan.

Lisa

I love that.

Mark

It was like great. So we all deal with it in different ways, I guess.

Lisa

Yeah.

Mark

But it's it all contributes to that... the overwhelm, right? It's all of these different things that I'm going to be talking about are all these things that drip feed into that sort of growing sense of overwhelm, right?

Lisa

Yeah. And you know, especially when you're dealing with like school and things as well.

It's like there's so many things that change, like with, I don't know, INSET days and things like that as well. And it's like you and they do the most ridiculous times for them. It's like a random Tuesday, like a week after they've gone back to school and things like that just fuck me off.

Mark

Yeah, well one I had recently that like, you know, my kids are both like they're they're all in Brighton and Hove, but one school has an INSET day when the others don't.

Lisa

Yes,

Mark

So, Jay was off. No, Jay had to go in when Otto and India were off. And the outrage... he was appalled by it. He couldn't get over it.

Lisa

Well well, this is how terrified I am of my daughter Poppy. She's now off because Fin is off.

Mark

You're like "Fair enough. You make a good case"

Lisa

She's actually supposed to be at school, but she's terrifying. So I'm like, just have the rest of the week off, it's fine. She's in such a rage about it.

I was like, I can't be bothered. I cannot be bothered. We'll just have it off.

Mark

One of the other things that I wanted to focus on, another kind of facet of neurodivergence that you talk about quite a lot in your book, and it was quite interesting to read: was difficulty with social interactions.

Lisa

Yeah.

Mark

And we touched on it a bit earlier about the mums in the playground, right?

Lisa

Yeah.

Mark

Not fitting in. And you'd think that might have been one of the things that started to make you think that there was maybe some neurodivergency there.

Lisa

Oh, is that a question?

Mark

I don't know, was it a question?

Lisa

Was it a question or a statement?

Mark

Okay...

Was it something that made you feel like neurodivergency was there?

I haven't got anything about... about non-verbal communication in this, but that was a great example.

Lisa

Yeah, um, yeah, I mean, this is the thing. Like, I've spent my life masking, which I I think a lot of especially women in particular have very very good at. And I think since having the kids, the mask has started to drop more and more because you just can't keep up with it as well as meeting their needs and then trying to pretend to be somebody that you're not, you just can't do it.

Mark

That's since diagnosis?

Lisa

Yes, and well mainly since having the kids, like it's just started to I don't know, fall away, I guess, bit by bit. And it's like and when they started school, I felt all the feelings come back again that I had at school of being left out. feeling like the odd one again and it sort of it was horrible because I was go... you know, I mean, the kids weren't... Fin wasn't invited anywhere anyway because he was at mainstream and So you're left out of all the parties and everything and then...

Mark

You're not on the circuit. On the parent circuit.

Lisa

Yeah. And it's like and I can't do small talk and things like that. So I will...

Mark

I've noticed.

Lisa

Yes. So I will, you know, on meeting them, I'll tell them about the massive shit that I had that morning or something and it's like people don't really get on with that weirdly.

Mark

And the people that do, you don't want to be talking to.

Lisa

Yeah.

Mark

Go on, tell me more.

Lisa

Yeah, that's the thing.

Mark

No, I'm fine.

Lisa

But the you know, the sort of PTA mums, they're horrified by that talk. Like, I only asked you to donate some money.

Why are you telling me about your shit?

Mark

Hit yeah, so then it becomes this sort of the echo of school, I guess. You'll then sort of feel on the outiside.

Lisa

And it does, it feels like you're you're back there again, like being the lonely, isolated one that like nobody talks to.

Mark

But there must have been some people... because that's the thing that I found.

Lisa

No

Mark

Like no one.

Lisa

No. No.

Mark

But there were were there no other... I know that PDA doesn't exist in Kent, but does neurodivergency? Or other other parents of neurodivergents that you were like, oh my people?

Because that's what we've found was that... and it wasn't by choice that we were ostracised, but but it was just like you say, you don't get invited to the parties. Yeah. And you don't have time to be arsed with the WhatsApp conversations.

Lisa

Well, that's the thing. I mean, I'm not completely blaming them. I think that's the thing.

Some of it is me. And I'm like, I. . I don't want to talk to you either.

Which I realised in the end, because it's like I'm trying to fit in to somewhere that I don't. And you know, when I really found my friendship group, it was online. With like, you know, like the SEND Reform girls, and like they were mums of neurodivergent kids, and most of them are neurodivergent, and that's sort of how I found them in the end because I've always struggled with friendships. I haven't, you know, there's people that talk about having friends from primary school still and things like that.

I don't have anyone. Like... I do now, but like not long term friendships always struggled.

Mark

But but it's different now, right? Because then you... when you... because you find your tribe. Yes.

You find others typically neurodivergent, me excluding. You find other neurodivergent people that you just connect with, right? You click with.

And yeah, like tend to gravitate towards them. So I'm told.

Lisa

Yeah, and that that's the fair and we you know, we are very similar where we will own you know, we don't feel like we have to constantly check in. In on each other, and you know, your text messages and things will be like, I don't know, I gave Terry a blowjob last night, and like, yeah, Terry would disagree with that. It'd be like, I haven't had one for over a year.

What are you talking about? But it's like I don't want to talk about. I don't know,

what do neurotypicals talk about?

Mark

The weather?

Lisa

Yeah, see, I don't want to talk about that. I don't want to talk about that. So that will bore me, and I just won't respond, which makes you a bad friend, I think. But like we all get that so we all just verbal diarrhoea and over share and yeah, it works.

Mark

And you've now got friends, right?

Lisa

Yeah, for now. Until my special interest changes again. You know, in all honesty, I do think there is like a saying where it's like you have friends at different stages of your life as well.

And I do think that that is something that I struggled as an autistic person, is to take my friends with me with the changes that I had in my life. It's like, oh, well, I've got my work friends. Oh, I've given up work.

You're no longer my friend anymore because we don't work together. We've got nothing in common and you know school friends not we're not at school now so don't need you anymore like it's like out of sight out of mind which sounds really harsh It sounds awful, doesn't it?

Mark

But also we have very, very busy lives.

Lisa

Yeah.

Mark

Like we only realistically I'm talking about neurodivergent... the parents of neurodivergence You don't have that much capacity to do lots of shit. I'm not, do you know what I mean? We're not going to lacrosse and golf and, you know, it's just batten down the hatches and get through another day.

Lisa

Yeah.

Mark

And then if there's time at the end of the day, then I can see someone or I can hang out with people. So I've got, you know, quite a small group of friends as it is.

And I think that's a realisation that you make as parents of neurodivergent kids. That it's about quality, not quantity.

Lisa

Yeah. And like you said, I think you're so sometimes burnt out and drained, and everything, you don't have anything left for anybody else as well. Like you said, after being with the kids all day.

Mark

Yeah, yeah.

Lisa

So I don't even want to talk to Terry. I just want to be left alone.

Mark

But the ones that are still there now are the ones that are forged in fire. They've been through it all with you.

Lisa

Yeah. Like Chelle, I call. So Chelle, my other friend, she's Autistic, but I call her a leech in a nice way because she just clings on, and it's she knows this. It's fine, but she and you know, you just can't shake her off. She's just if she stays, which is good, yeah.

Mark

Because you're not trying to, right? No, exactly, perfect.

Lisa

Yeah. She's gonna love this.

Mark

Another of the things... another of the facets of being a neurodivergent parent of neurodivergent kids that cannot be overlooked is how much harder it is if you have issues with executive function. Right, so the ability to prepare stuff and organize stuff and hold several things in your mind at once. There is a cruel irony in the fact that of all the people in the world, I think we have to do the most paperwork.

Lisa

Yes.

Mark

The most amount of organization. It's phenomenal.

Lisa

Yeah. Like the amount of doctor's appointments and.

Mark

EHCPs, DLA applications, like just talking to teachers, constantly like interacting with SENCO's and authorities, the the planning you have to do just to leave the house. It's not even paperwork. It's just like, right, what do I have to remember for every single one of my kids' different needs to make sure that we go out of the house without a massive meltdown?

Lisa

Yeah.

Mark

Just leaving the house.

Lisa

Yeah. And then like if you if you are one of the lucky ones that manages to get a babysitter or anything

Mark

Love you guys. Well done. Proud of you. Every single person in this room this evening.

Lisa

Yeah. But yeah, like the things that you have to go through to tell them stick to that routine and make sure you follow and you know some of these are like mental routines as well like yes before bed you've got to do this dance to the left, you've got to say goodnight to these certain toys in this order. You've got to throw a red ball over your arm, and then   got to pinch yourself on the arm

Mark

I would love to try that with a babysitter. Now, Otto needs his mauling.

Lisa

That's the thing, you just can't explain it to people.

Mark

Yeah, yeah, true. But um but it's the it's the amount of, you know, like I say, the paperwork that we have to do is phenomenal, the amount of stuff that you have to fill out and keep on top of. It's not just writing the stuff and sending it, it's then following up to go have you got it and then following up to going okay if you have got it can you let me know and it's like it's constant the the chasing up that is needed

Lisa

And I think, I mean, that's the like ADHD side with me that shows because I really struggle with that. And

Mark

How do you do it?

Lisa

I don't

Mark

Oh, right.

Lisa

Because I well the thing is I always give people advice.

So like with like DLA or EHCPs or anything, I always say photocopy. It because like then it helps for when it's up for renewal, especially if things haven't changed and stuff like that I photocopied it, but then I lose the photocopies and I just lose it every time. And it's like people are like, make a diary.

Well, I lost the diary. It's like I. I can't find anything. So I struggle with this so much.

So Terry like helps me with that side of things as well.

Mark

So he does a lot of the admin?

Lisa

Well, no, I don't want to give him credit for it. I would say he equally... it's an equal partnership.

Mark

Okay, that's important, I think. You know, because I've taken on a lot more of that now. Since Tam and I had separated.

So, but Tam did a lot of that early on, and that really fed... so, Tam has got strategies, so lists. Just a list of lists. Genuinely, a list of what lists there are.

Lisa

Do do they have ADHD as well?

Mark

Yeah, ADHD and autism.

Lisa

'cause I was going to say, 'cause I feel like the ADHD overtakes the autism that way.

Mark

Yeah.

Lisa

When it seeks hope, you'd feel like it balances out somehow and you just Become neurotypical. Do you know what I mean?

Mark

That's not how it works, Lisa.

Lisa

I know, but you would think it did.

You've got the ADHD disorganisation. Autism organisation, you just come out.

Mark

Perfect harmony. No, both sides are pissed off with you.

Lisa

I know you. It's very annoying.

Mark

But yeah, yeah, so Tam has leaned... has gone the other way. So everything is super, super organized and super structured. And I'm actually genuinely thankful for that because that meant that our kids have their EHCPs, and you know, we've been able to  accommodate them, and...

Lisa

Yes, because the local authority will not let you off if you're late with that even though they're always late.

Mark

Exactly

Lisa

It's fine for them

Mark

So yeah i just wanted to kind of highlight how difficult that whole process is for neurodivergent people.

Lisa

I've always said that I think it's really unfair that we all, like neurodivergent people, have to go and get a diagnosis and things. Like I think everybody should be diagnosed and if you're neurotypical you should have to go and get undiagnosed. Because then you don't have to do the paper... like they can do the paperwork side of things that we struggle to.

Mark

I love that idea. That's a wicked idea.

Lisa

Yeah, I think it is. I'll put that to the new Prime Minister.

Mark

You're going to have to fill out a form though, you know that.

Lisa

Probably.

Mark

One of the other things that I wanted to look at. Another trait of neurodivergency that definitely affects I think it affects you, is rejection sensitivity, as you talk about in the book.

Right. And if you are rejection sensitive and you have a child like Jay, or you have a child like Fin, who are...

Lisa

Brutal

Mark

Brutally honest. Does that not trigger your rejection sensitivity?

Lisa

Yes. Yeah, it does sometimes. And and yeah. I mean, I am constant Told by Fin how disgusting I look, how much my breath smells in the mornings, like everything. But I kind of, there's honesty, and then there's, you know, there's being a bit...

Mark

Being a dick. Yeah, yeah. No, Jay is skirts that line. very, very often.

Yes. And deliberately so, I guess sometimes. Yeah.

Like the other day he was like, "Is that a new shirt, Daddy?" And I was like, "Yes, it is".

"It doesn't go with those trousers"

Lisa

Yeah.

Mark

You didn't need to say that, did you?

Lisa

Yeah, all the time. But I d I just I d I definitely don't ask his opinion on how I look anymore. Never anymore.

But the rejection sensitivity, that is like some of the reason that I struggled with friendships. things as well yeah is because i you know it it it it's in weird ways that it comes a lot like if my friend for example would have another friend I was like, oh, well, that's the end of us. And I would feel completely rejected.

Like, nobody else can have any other friends who be.

Mark

India has that. That's interesting.

And I can see that with Poppy.

Lisa

Poppy's definitely got rejections. But just one friend. She has none, to be honest.

She she has imaginary friends, but she has real rejections. sensitivity where she you would say to her you know oh do you think you could do this or something in a different way and she will tell it as you're shouting she'll take it she she literally i think i asked her to just move her shoes once and she went into the garden and she went Why does nobody love me? She literally takes it really to heart anything that you say. You have to be so careful.

Mark

Yeah, India has that a lot, actually. I've only just thought about that as being rejection sensitive.

Lisa

Yeah.

Mark

Yeah, so any correction of anything leads to literal meltdown

Lisa

and it's and it's like they feel like they've failed and done something terribly wrong and yeah, which is a really like common trait with autism is that you feel feel like a failure your whole life. And, you know, and that leads to like imposter syndrome and things like that. It's like even with my second book, it's like, you know, Terry's had to talk me round so many times. Because my first book, like, blew up. It was like what happened with that was, like, unprecedented, and that's why the publishers were all fighting for it and things. That is unheard of, but I wanted that again for the second one.

And everybody kept saying to me, that's not going to happen with the second book. That was a one-off. Like, that's not going to happen.

I still sold loads, but because it didn't do as well as the first, I'm like, well, it's a complete failure. I'm a failure. I'm terrible.

Like and that's and Terry has to talk me around all the time, which must be really frustrating for him.

Mark

Yeah, 'cause he thinks you're ace.

Lisa

Yeah.

Mark

And you don't see it in yourself. And that's yeah, that's it.

Lisa

And it must be just irritating as well.

Mark

Like constantly pick somebody up.

Lisa

It's like. Shut up.

Mark

He's just your hype man. Yeah. Basically.

Yeah. So but do you not because when Jay says horrible shit to me, I saw it's water off a duck's back now. Like it was quite hard early on, yeah, when I didn't know really what it was, and I um, and... yeah, you know, you kind of have different expectations of the parent-child relationship, right?

Of going, well, you will respect me because that's how I was parented, and then I still have yet to receive respect. And so the bar has been lowered. And so now it it it doesn't like wound me like it used to.

But do you still do you get you know because I know we laugh about it, but it is hurtful when that shit is said.

Lisa

Yeah. It it is, but I like you said, I think I have got used to it. I've been got used to being mentally abused by my child.

But it's like... I think the thing is, like Do you know what? The words don't hurt me so much because the actions show completely differently.

Mark

Okay

Lisa

And I think that I now look at the action, and maybe because I'm autistic As well, I get that as well, and so I sort of understand that the words aren't really meaning, it's just angry or in the moment or and the actions always show me how much he actually really cares

and what he really thinks. Yeah, that's really interesting. And that's what I try and focus on more than the words.

Words don't don't mean a great deal, I don't think.

Mark

No, when because it's also coming from a place of overwhelm.

Lisa

Yeah.

Mark

Right, so it's in that moment, that heat of the moment. Yeah. But it's then when he sends me a little like YouTube clip of this little video game thing that he's there.

It's like he's pebbling, right? He's showing me something that he thinks I'll enjoy.

Yeah, like connecting.

Lisa

Yeah, that's the thing.

Mark

I look for love in other ways.

Lisa

Yeah. I mean, I have been blocked from his. From texting him quite a few times.

Mark

He blocked you?

Lisa

He added me to his WhatsApp group with his friends, and I got really excited. And then within like two seconds, he blocked me.

And he was like, oh, it was just by mistake I put you on there.

Mark

I mean, it was definitely by mistake.

Lisa

Yeah. I know, but I was so excited, and then I was blocked. I was like, ah.

Mark

We've had a vote and you're out, Mum.

Lisa

Yeah.

Mark

Sorry.

I think like probably the biggest facet of being a neurodivergent parent, parenting neurodivergent kid kids is how you navigate overwhelm in them, meltdown in them when you're overwhelmed yourself. As I was saying, so there's lots and lots of different things that can contribute to this overwhelm. And so often you you have to put yourself first, right?

Yes. Because you're the you're the parent and we we are hardwired to put our kids' needs First.

And we're always told as well, like, you've got to put your gas mask on as well. So what? Which one is it?

Lisa

Yeah. Like, put yours on first and then you can administer...

Mark

Administer oxygen to them.

Lisa

Yeah, but when you're raising neurodivergent kids and things, you often don't have that. There's not a lot of support out there. And I don't know if other people are the same, like there's hardly anybody who babysits, there's hardly any after-school clubs or you know, anything like that. There's such little support, and I think how you ever sort of get time for your yourself, and I think that's the thing.

I think a lot of us lose ourselves when we become parents because we just become a carer and we sort of lose who we were before becoming a parent. And I think that's a really hard like transition from going from no kids to a child or more, and but it's you know, it is important to take those breaks and things when you can, but...

Mark

But it's just how you how do you do it, right?

Lisa

How do you do it?

Mark

So when your kids are overwhelmed, right, they're in meltdown. Let's just say you're in Asda, right? Yeah.

They're in meltdown. And you are being triggered. Not just by Asda and by people, but by their meltdown as well.

Can you just shelve that? Like, can you just compartmentalise it, or you're like, I'm looking after my needs, I'll see you in the gin aisle.

Lisa

Just leave them there, just leave them there. Um, well, that's the thing. Like, I would end up having the meltdowns as well, and especially in the beginning.

I would end up leaving loads of places crying and like seriously upset. And, you know... the whole day would fall apart after that.

Quite often as well with the kids, when they're having a meltdown, like they're okay after it like it will last whatever amount of time and then they're absolutely fine but I'm still carrying that.

Mark

But then you'd be navigating that first, right? What like Liz Evans said and Heidi Mavir said is that when their children were in burnout, they did everything to kind of help them through burnout. And then, when their kids were out of burnout, they then were in burnout. It was like finally, you like you've been holding the world on your shoulders and then you just collapse.

Lisa

Yeah. 'Cause you do. You have to sort of hold it together at the time.

But really in your in your head you're screaming and you're in like fight or flight mode and things. And you know, there's that saying, like, you're only ever as happy as your unhappiest child. And I think that's so true.

Like, it's... you know, but if they're upset, if they're in shutdown, anything like that, it affects you and it's going to bring down your mood. But then once they're over that, you're left with that. And that's you know, it's it's like a knock-on effect, so that then your meltdown's going to come or shut down, or

Mark

Yeah, yeah, which is the anecdote you can't remember in the book about the farm. When you got home, you just went to your room and just had that.

Lisa

Yeah.

Mark

Just locked yourself in the room.

Lisa

Yeah, was that when we got the we couldn't find the way back as well?

The wrong turning?

Mark

Yeah. You say that as if I was there. I feel like I was.

Lisa

The thing is, I did write that quite a while ago.

Mark

It actually happened to you, though.

Lisa

I know, but I just... this is the ADHD I think.

Mark

I wrote it down. I don't ever need to remember that again. Now, here I am making you show receipts.

But yeah, it was that. It was basically... like it's it's a it's a situation we're all familiar with with with neurodivergent kids.

Of you start out with this lovely idea, we're going to go to the farm and have a lovely time, and there are multiple different factors that lead to a universal shit show. And then you're like, right, we're going home. And then going home's a shit show.

And then you get in the door. And then they're like, finally, we're home.

Lisa

And you fall apart.

Mark

You fell apart.

Lisa

Yeah, that's the thing. And the farms were always a bad idea for us, anyway, because this is one of the things that I said to my mum in the beginning. I said, Fin is autistic, it's the smell of the farm and she won't believe me. And I was like, anytime we stepped into a farm or like a barn, he would scream the place down.

I was like, it's the smell. But that's that's a different story altogether.

But I just that is

Mark

That's for the next book.

Yeah, that's how I noticed he was autistic. Smell of the farm bothered him a great deal.

See what's quite interesting in in our household, because again I talk to Tam about this and how they navigate overwhelm.

They talk about it quite a lot. The kids the the kids actually notice that Tam is in overwhelm.

Lisa

Oh god, I wish mine did.

Mark

No, no, I was like really surprised given my experience of my kids and how forgiving they are to me. But apparently they offer to help Tam sometimes.

Lisa

Oh.

Mark

Which is like mind-blowing to me.

But I cannot tell you how lovely it is to hear that that happens.

Lisa

I am shooketh at that. No, I mean I fell down the stairs. Broke my foot in three places.

I mean, I was screaming. Fin was in the other room. He did not get up.

And I said to him, Fin, Fin, I need an ambulance. And he was like, I just need to finish this bit on my game. I was like, I'm literally dying.

Mark

I mean, I can see his point. I mean, that foot's still going to be broken while this game is going on.

Lisa

Literally. Like there there is not no they would never notice if I was in overwhelm at all.

Mark

Yeah

Lisa

And you know, the amount of times I've been crying, my my dad died last year and I'd obviously been crying on and off a lot about it and Fin will literally come over and ask when is dinner and I'm like... sobs... It's like, can you get on with it, please? Like, get yourself together.

Mark

Can you speed run the grieving process?

Lisa

Like, yeah.

Mark

Because I'm hungry.

Lisa

Yeah.

Mark

Yeah. No, so I was genuinely shocked. So Tam wouldn't would now say, You can't help me, but just give me some time, give me some space, and they do.

Lisa

And they do that?

Mark

I mean, yeah, because that that's kind of like probably the thing they want, anyway. So you don't need me?

Great. I'm going to go.

Lisa

Yeah, yeah, that's is true.

Mark

Yeah. But then they kind of all navigate it together, which sounds lovely. I mean, look, I'm not there to witness this, but...

Lisa

Do you think they're lying?

Mark

No. I don't think so. Maybe.

Maybe it's like, no, actually, I think it's wonderful when I'm with the kids. No, it's. It really gives me a lot of kind of joy to think that that's what happens.

Lisa

That is lovely. But how old are your kids again?

Mark

They are thirteen, eleven, and nine.

Lisa

Oh, yeah, mine and the same age. They're not doing that. Also, maybe they'll do that when they get older.

Mark

But they don't do that with me. You see, this is the thing, and like... so Tam has talked quite a lot about how they're very open about their their neurotypes and they talk about it a lot and they sort of joke about different facets of the things they find difficult. And so it's made them a bit closer.

I don't know. I'm interested, audience-wise, if you've talked to your kids about your neurodivergency. By raise of hands, how many of the kids are sort of sort of supportive and cool about that?

And how many are completely disinterested? Hands up if they're supportive and it kind of helps?

Lisa

Oh, I'm so upset by this. That's quite a few. Why are my kids dicks?

Mark

Okay, so that's you know like... and hands up for the for the They are not in any way interested and just... oh, so there is more of those. There are more of those than the the other ones.

Lisa

Oh, that actually really concerned me then. It's like Fin, he used to... there was one time that he and he so loves animals and things now, but when he was younger, I remember he started stamping on ants and I was like, oh my god, he's gonna be a serial killer. Like, I was so terrified.

And it's like I just had that moment then when I was like, oh my god, they're all really supportive and everything. Mine aren't. What's wrong with them? He loves ants and animals now.

He's not a serial killer.

Mark

One of the questions I had was... are you ever tempted to pull the neurodivergency card on your kids? And go... "You're not the only one, you know?"

"I didn't get to call my mum a bitch when I was a kid".

"I had to raw dog neurodiversity when I was growing up. I didn't get accommodations."

No.

Lisa

No. But it happens the other way round where that Fin tries to pull that. It's like I can't possibly clean, I'm autistic. I'm like, you can't pull that on me. No.

Mark

Really?

Lisa

But yeah, it's, I mean, I've obviously noticed it in my own family now, as well.

And I think that's another thing. When you start to see it in your kids, you then start to see it in the whole family. And I'm like, you know, my mum, my dad, aunties, uncles, and I'm like.

And I think also that's why sometimes it takes us a long time to realise in later life because we've been living in our own little bubble of neurodivergent life. And, you know, we realised suddenly it's not the norm.

Mark

And also, neurotypical families are not letting you anywhere near them. In the playground, they're rejecting you, so you don't know what it's like.

Lisa

And so you think it's perfectly normal for all these things to happen? I mean, we used to... my dad hated crowds and things.

So we would get to places like Chessington and places about four o'clock in the afternoon when it was ready to close. So we'd miss all the crowds, but we'd have to dash around it in an hour and leave again. We did that all the time.

And I thought this is how everybody behaved.

Mark

That's something that Tam told me recently. It's like they like find the place that you want to go and go on Christmas Eve 'cause no one else goes.

Lisa

Yeah, that's a brilliant idea.

Mark

That's a really good idea. It's just insane to me.

Lisa

And it's like taking the kids to the park when it's pouring with rain and things it's uh it's it's yeah we do like that

Mark

My kids don't care about that like yeah

Lisa

Soft play in a heat wave it's that's what we do

That's a terrible idea

It's a terrible idea. It is you are correct

SECTION INTRO

It's not all rubbish.

Mark

Okay, we're going to look at the positives now. So, with every episode of Neuroshambles, I like to shine a light on the positives, and many times it's really hard to find the positives. I don't think that's the case here.

I think there are a lot of positives of being a neurodivergent parent, raising neurodivergent kids. Because, well, firstly, you understand them in a way that like that I can't, for example, which I think what you were saying with you and you understood Fin before Terry could. You understood what could lead to his meltdown and his overwhelm.

And that's really lovely. Do you feel like you have a closer connection to Fin because of that?

Lisa

I think so, definitely. I think it makes me more patient with things. That Terry may not be as much because he thinks you can just get over things. Yeah. And you know, it's that easy, whereas I know that is going to take a lot of getting over. But I also think one of the positives is that we have like a strong sense of injustice and things and I think you know fighting for you know loads of us have to fight for support for EHCPs all of that and I think you know when you're neurodivergent it's, you know, that's a that's a good trait to have because you're going to keep on and be that annoying parent at school that the teachers hate.

Mark

A lot of the most prominent neurodiversity advocates are neurodivergent, right? Because they've been there and they've seen the injustice and they feel that and they want to do everything they can to advocate so that other people don't have to go through it, which is amazing. And you. Started SEND Reform England, right?

Lisa

Well, not just me.

Mark

No, obviously. But the other girls that are here in this, they'd be though clearly, yeah, that was all mine.

Lisa

Yeah.

Mark

I don't know what they did.

Lisa

But yeah, we all were you know, there was a for the first Lon... did you go to the London? You didn't, did you?

Mark

No, I had I don't I don't have the capacity.

Lisa

Where were you?

Mark

Which... for what? I don't know.

Lisa

The London protest.

Mark

No, I didn't. I was... I mean, it wasn't that I was refusing to go.

Lisa

Where were you that day in 2023?

Mark

Because I have a day job as well. Like, a full-time day job. I can't just swan off.

Lisa

Alright mate

Mark

But I'll be the next one. I'll be at the next one. No, that wasn't my point. What I was saying is.

Lisa

Some of us have an actual job.

Mark

Don't just swan around writing in books all the time.

Lisa

You sound exactly like Fin.

Mark

This is RSD Live with Lisa Lloyd.

Lisa

But yeah, so for that first protest that we did in London, like over a thousand people came, which is insane. And then we ran like 14 other protests and everything. And you know, most of them are neurodivergent parents that were like.

Mark

It boggles my mind that you have the spoons and the capacity to do it. And you found it.

Lisa

I'm just very, very angry.

Mark

But you're exactly right, right? So you have this feeling of injustice, this sense of injustice, and you're just driven to do something about it. I don't think that would have been the case had you not been neurodivergent. Right, you just harness this collective power of neurodivergent mums and then like focus it on Parliament.

Lisa

Yeah, but then I think also that's the flip side to it, like you were saying earlier, where there's no sort of respecting authority. You know, and that's like like Fin and Poppy don't. So much Fin used to be a rule follower he's becoming a little bit now in the teen years okay but he's sort of you know you have to earn your respect like I'm not going to just respect you because you're a teacher or an adult. But I kind of agree with that.

I think that there's some real prickish old people. And I'm like, I'm not going to respect you just because you're older than me. You're a dick.

And I get that. I'm like, why do we have to respect our elders?

Mark

It's tricky to explain the concept though, isn't it to like annual divergent kids?

Lisa

But explain it to me. I don't get it. No, I'm not going to...

Mark

Well, some people are arseholes and believe that you should pay them deference because they haven't died yet.

Lisa

But I'm like... you've just lived longer.

Mark

Yeah, exactly. And they believe that that that entitles them to yes, I know. So yeah, there's definitely that... the social injustice thing is a huge positive, I think, because it means that people tend to get shit done.

My favorite advocates are all neurodivergent, which is great. And also, I think, as a neurodivergent parent of neurodivergents, you're sort of uniquely placed to be able to model strategies to them.

Like you can help them to kind of navigate their own overwhelm by showing them what that looks like.

Lisa

Or that they can learn to not turn out like you.

Mark

Exactly. Look at what can happen if you don't rein this shit in kids.

Lisa

Look at the state of me. It's like, don't do it like this.

But yeah, it's but yeah, I think so. And I think, you know, like by advocating... and everybody's you know, we're all talking about autism more and things like that and raising awareness more. And I think, you know, that's showing the younger generation to be more proud of it and not something to hide away or anything or be ashamed of.

Mark

Yeah, and that's really important. You're normalising it and you're putting out.

Lisa

And normalising feelings. It's like, you know, having a meltdown and. all those things we experience is okay.

Mark

Yeah.

Lisa

It's okay to do. It's not a bad thing. It's just expressing your emotions.

Mark

Yeah, absolutely. And the more that that's out there, the more the kids like if you if younger Lisa had seen that.

Lisa

Yeah.

Mark

You know, and and recognised it, then you would have probably understood your neurodivergency earlier.

Lisa

Yes. And not spent my whole life thinking I'm weird and stupid.

Mark

Yeah, exactly.

Lisa

That's quite deep, isn't it?

Mark

It was, yeah, we got a bit serious there. Sorry, apologies for that.

Lisa

Didn't come for a therapy session here.

Mark

I actually genuinely like the fact that in my family I am outnumbered by neurodivergents. And we're just going to go with that. Okay.

We're not going to unpick that. Because it's sort of... they're like a little gang, like the when India was diagnosed autistic. So, Jay got diagnosed first, Autistic ADHD, then Otto, then Tam.

and then India last year, and I'm watching them all fall around me, just go, for fuck's sake, man. Last man standing.

Lisa

You should have got a buy one, get one free at the clinic.

Mark

But I remember when we told Jay, and I've told this on the previous episode of Neuroshambles. We told Jay that India was diagnosed autistic.

Me and Tam walked in and went, Do you want to know how the result went with India? And he went, Yeah, okay. And we said, well, she's autistic.

And he just looked at me and went, "get out, loser".

Like, I'm not one of the gang at all. But I like the fact that they're empowered and emboldened by their neurotype and it's not seen as weird because they're outsiders in the outside world.

Lisa

Yeah.

Mark

Largely. Like when they are in neurotypical society, they're the odd ones out. So it's so nice that they can be in the house and unmask and be themselves and not be sort of ashamed or held back in any way.

Lisa

And did I like take the mick out of you in your neurotypical ways? Staring into people's eyeballs you weirdo

Mark

No, like India constantly takes the piss out of the fact that I eat all food.

Lisa

Oh yeah.

Mark

Like she can't get her head around it. And it's just made me start to question it.

If you're like eating something going, do I really like this? Is this a thing? I don't know.

Yeah.

SECTION INTRO

Neurodiversity champions.

Mark

Okay, neurodiversity champions now. These are the people or organisations who are doing some stellar work in the realms of neurodiversity. Do you have any neurodiversity champions? For us, Lisa.

Lisa

Well, obviously, I'm going to be biased and I'm going to say about the charity that I volunteer for, which is Includes Us Too. They are Kent based, but they are amazing.

Mark

And what do they do?

Lisa

Well, they do loads. They they help people with EHCPs, DLA forms, but they also run forest schools They do home ed groups for the kids. They do like a borrowing library. So you can borrow the sensory toys or buggies, wheelchairs. You know, if you need them for holiday, you can test them out.

Mark

That sounds amazing.

Lisa

Oh, it's brilliant because how expensive are like sensory toys and things? And it's like if your kids don't like, it just spent like three hundred pounds.

Mark

Yeah, they yeah, there's loads of those things where you try them out and they just go "no".

Lisa

Yeah. So that you can take them off for a week, two weeks, see if they get on with them and then they run a youth club for SEND young adults, which I volunteer out every week. And these you know, some of them are kids, some of them are young adults, they are bloody brilliant.

They are just brilliant. So funny. But it's so important to them.

And it's like a real little community for them and something that they look forward to. And they do life skills there, we do cooking with them and things like that.

So they are incredible. They do so much.

Mark

They sound amazing. I'll put they'll put a link to them in the show notes. Yeah, thank you. you yeah so what's your involvement with them are you just their hype woman?

Lisa

I just volunteer. Well we do like fundraisers and games As well, and to raise money for it, and then I just volunteer work at the youth club and...

Mark

Wicked.

Lisa

Yeah, it's lovely.

I'm trying to get Fin to go there 'cause I'd really think he would get on if he just did it,

Mark

But he the fact you're there is probably the thing that's holding him back.

Lisa

I know that's probably putting him off even more. But it's like I don't Oh, I just think he would enjoy it if he did, but he's not there yet.

Mark

He's not demand avoidant. Because it's Kent.

Lisa

Do you know, I think he has PDA as well.

Mark

Yeah, so that you've got to approach it in a different way.

Lisa

Yeah, and I didn't realise that you could mask PDA.

Mark

What? Is that a thing?

Lisa

Yeah. Yep. Yeah.

I didn't realise that until recently. I'm like, oh my god.

Mark

How can you mask PDA? They're still not doing it.

Lisa

He would be. very sort of well behaved at school. He'd be the child that sort of sat quietly in the corner and everything and then everything would let loose at home but he was masking all of those PDA traits as well. So he was he was seeming compliant.

Mark

Very so he was compliant at school and then letting all of the defiance out at home?

Lisa

Yeah

Mark

Fun

Lisa

yeah, really fun. And um, yeah, the more I sort of know about it, the more I'm realising. Yeah, that was PDA. Like I wasn't even allowed to... so we were saying about me struggling, making friends at the school gates and things, but I wasn't even allowed to talk to people. at the school gate so he wouldn't allow that and you know that was sort of him trying to control that situation and yeah I wasn't allowed to speak

Mark

No, I'm not if I'm with India.

Lisa

I'm often not   to speak.

Mark

In the supermarket... I'll do it in the... no, I'll do it now.

Here's a little bonus what the flip moment. I was in a supermarket and I bumped into someone that I knew with her kids.

And I started chatting and India, who was getting me some cheese, basically came over and went, "Who are these creepy kids?"

Lisa

I love it.

Mark

Creepy kids.

They were just literally normal kids. They were like, you know, neurotypical kids and creepy kids. Jesus.

I've got a neurodiversity champion I wanted to give a shout out to. The wonderful Laura Brown. I don't know if you know Laura Brown, aka the Spinning World of Autism.

Lisa

Oh, yes.

Mark

Who is a bloody inspiration. So she has a non-speaking autistic Who wasn't able to properly access the NHS speech and language therapy he was offered at the age of three because they don't know how to work with kids who don't speak at all.

So... which is absurd because these are the kids that probably need it the most, right?

That's not necessarily a criticism of the NHS. they're not being deliberately mean.

They just don't have the tools and know enough about speech and language differences in autistic kids to be able to help them. So Laura, like a champion, has set up a campaign to address this issue. So there's that sense of injustice thing rearing its head again.

So, this campaign is called Speak Up for Autism.

Lisa

I was going to say Speak Up for Autism.

Mark

And she's calling for autism-specific training to be given to all speech therapists. So, they have more awareness of the ways that they can help autistic kids to communicate, whether that's through AAC or better understanding of non-speaking autism, situational mutism or apraxia of speech, all of that stuff.

So she's lobbying MPs about it, and she set up a petition. Last time I checked it, it was on 6,000 signatures, and you need a lot more than that to get it spoken about in Parliament. So I'm going to put a link to that in the show notes.

If any NeuroShambles listeners want to give that a boost, then please sign that. That'd be really good. She also does talks and webinars to raise awareness.

She's a genuinely impressive human. So shout out to Spinning World of Autism on the socials or on her website, spinningworldofautism. com.

So that's that?

Lisa

Amazing.

Mark

Awesome.

Lisa

Why'd you keep looking at me?

Mark

It's the eye contact. The eye contant is irresistible. I can't help it.

Lisa

Do you want me to add something to that?

Mark

No. It's fine.

SECTION INTRO

Tiny epic wins

Mark

Tiny epic wins. So these are the things that to a neurotypical family would be no big deal, but to neurodivergent families, they are massive wins. Have you got any tiny epic wins for us?

Lisa

What, from this week?

Mark

No, just in general. General life.

Lisa

Is there anything that has Well, this week, actually, the other day, Fin wrote "Ok, love you" in a a text back to me.

Mark

Oh my god, that's amazing.

Lisa

Yeah, usually it's "what" or "bruh". Bruh is a lot. Literally said, "Ok, love you".

Mark

Is that the first time?

Lisa

Yeah.

Mark

That's so lovely. Yeah.

Lisa

How nice is that? I was like, I said, get it framed. But you know, when you're like trying to play it cool, I was like, I'm not gonna like put too much, I just put a kiss back and that's it. I was like, I don't want to make a bit because of the PDA. I was like, I don't want to make a big deal out of it.

Mark

Yeah, yeah, yeah, yeah. Oh, that's lovely when that happens.

Lisa

Yeah, that was huge because those massive yeah, they really he doesn't like saying that

Mark

No no no no so that's yeah that's a major major win I've got a tiny epic win is the simple fact we've made it through a school year. We've got through it. This is the day after school has finished. Yeah. And the fact that we managed to get through it with all of our mental health relatively intact.

Lisa

I didn't. Well done, you.

Mark

Yeah, I'm just showing off. Look at me. Because that's not something that neurotypical parents have to celebrate, is it?

Like, they don't go "Congratulations, Elizabeth. You made it through the entire year without losing your shit".

It's just a thing, and it's just expected.

It's the bare minimum. Yeah. Right, but it's so hard for our kids.

Lisa

I've heard some of them say we are looking forward to the school holidays. I thought this was a myth, but I heard one in the wild.

Mark

It might have been me.

Lisa

Was it you?

Mark

Well, no, okay. So the thing is, because we talked about this the other day, right? It's not that I'm not looking forward to the school holidays. I'm looking forward to not having school and the dysregulation of that.

Lisa

So it's a fine line.

Mark

It's all of that, like, you know, like Jay's coming home early. Is that okay? Yes.

time. Yeah. Um that's the least of it.

But it's the you know, it's the dysregulation getting them in and the overwhelm, especially when you've been on the tail end of the summer when everything changes and the kids are all over the place and Otto is going to a secondary school now. So he's absolutely all over the place with anxiety. So looking forward to school holidays is really just like just looking forward to that bit ending.

Yeah, we'll deal with the other shit when we're there, when we're in the moment.

Lisa

Yeah, that's what I'm doing. And not having to get them dragged. And things like this is what I look forward to.

Like with Poppy, it takes hours to get her dressed, her teeth, but because she's fighting me the whole time. Then she'll pretend she's broken her leg and then she'll crawl to the bathroom, and I'm like please every day. And it, yeah, so I'm just leaving them feral in their PJs.

Mark

There is a lawless wasteland in our homes. Yeah. So yeah, that that was I wanted to just kind of say just to celebrate the fact that we got it through.

Like we got through the school year with relatively intact. Because if I looked at two years ago, we ended up the year with Jay not being able to be in and being in burnout. And the start of last year was really difficult for Otto, who was incredibly overwhelmed by being in year five, and that was really tricky for him. So, getting through a whole year without any major wobbles like that for me is a massive win.

Now, I obviously realise that for many parents with a neurodivergent kid. That is not a thing. So I'm not showing off.

I'm just taking my own win. And I'm also not linking success to school attendance because, you know that's it's a very different barometer of success that we all have, but with amazing support from our schools because we I think that's a massive difference.

Yeah. Like for me and a lot of other people I've spoken to, our schools the schools that my kids are at are really supportive and have been incredible.

Lisa

Yeah.

Mark

We managed to get through. So I'm taking the win guys.

Lisa

That is a huge win.

SECTION INTRO

What the flip?

Mark

What the flip moments now? These are the moments where our kids will say or do something absolutely fucking mental that will completely flummox us and leave us just scratching our heads and walking off. I've always got a few of these. Have you got some want the flip moments?

Lisa

Oh my god, there's so many.

Mark

Bring them out. Bring them out.

Lisa

Oh God. I can't think. I can't think on the spot. You do yours first.

Mark

Okay. Jay the other day said to me, "When I get older, I'm going to eat pizza in the shower"

Lisa

Oh.

Mark

And I went, ""Wouldn't it get wet?" And he went, "Yes, but I'd still have free will".

End of conversation.

Yes, you would have free will. You'd also have soggy Margarita. Amazing though.

That's his dream, his ambition. Eating pizza in the shower. You could do it now if you want.

Fuck, I'm not. I'm stopping him. But like in our household, he's like going upstairs with some pizza.

Where are you going with that? The shower. No, you're not.

Get downstairs. If he wants to do it, he can do it. Do you know what I mean?

There are no laws in our house.

Lisa

I love that.

Mark

That's him.

Another one started with one of the most Brighton sentences you're ever going to hear was me looking out of the car window and going, "Look, that guy's riding a unicycle" It's a very Brighton thing. India went, "Maybe it's just a broken bike".

And I went, "No, no, it's definitely a unicycle".

And she said, "You don't know that. You don't know his life."

Okay. But I know unicycles, and that is a unicycle.

Lisa

Oh, I love it. That is brilliant.

Mark

The final one I've got from Jay was he was just really quiet, just sat there, and then from nowhere he just went. "No one cares about the number 11"

Lisa

Why the number 11?

Mark

And then he went, "It's the least thought about"

Lisa

Is it?

Mark

Well obviously not, 'cause he was thinking about it. Like I didn't want to point out the flaw in his logic there.

But you this is the only number that you've mentioned today. It's not. But, I mean, it's it is he's right in a way.

It's a shit number. Isn't it? Of all the numbers, it's pretty weak.

You know, it's just after 10, you know. Ten's, you know, big old fancy pants, double digits, and then 11 sneaks on by two of the same digit. I get his point, is what I'm saying.

Maybe I am neurodivergent.

Lisa

I did try and tell you

Mark

That was my light bulb moment.

Lisa

That is. That's it.

Mark

Do you have any what the flip moments for us? Have you thought of any?

Lisa

No, I've literally got a mind blank out. I have so many. Like, there's just so many times that the kids say things that I like literally want the ground to swallow me up and things, but I literally can't figure it out.

Mark

You need to start writing them down when they happen.

Lisa

I do, don't I know?

Mark

Like, I do it in front of them. I go, hang on, hang on. I'm just gonna write this down. It's fine.

Lisa

I know, but I'm usually, I mean, One of the main ones that always stands out to me, because I remember it really well, because Poppy was delayed, speech delayed, so she d she didn't say hardly anything. But then when she first started talking, we came across... there's like these two old ladies walking their dogs and she just went up to them and went "Fucking dogs!" in their face And like I was so pleased that she was talking. I didn't correct her or anything.

And I was like, "Oh my God!" like and these old ladies were like looking like, why are you not turning off your child? I was just so pleased that she finally said something and kind of in context, as well.

Mark

Love it. Yeah, wonderful. Okay, that is it for this episode of Neuroshambles First Fleet, Lisa. Thank you so much for coming on and being a returning guest to Neuroshambles. And also, I think I need to give a shout out to your book. This is the book here.

It is Unmasking Mum, which is available now. It is wonderful. It is.

Genuinely funny. Genuinely funny - I'm not just saying that.

Lisa

I can't remember. I'll take your word for it.

Mark

No, it's really funny, and it's, yeah, it's a great book. If you are a neurodivergent parent of a neurodivergent kid, there will be a lot that resonates there. You can click on that QR code and book it if you want to do that.

I'll put a link in the show notes if you're not here.

Lisa

I've got bookmarks.

Mark

Okay, we can give those out at the end.

Also, thank you. Thank you, everybody who's in this room today. That is like, thank you for coming because it's not easy, is it?

Getting out the house in the hot weather and trying to find... what have you? I don't want to know what you've done with your children. The fact you've done whatever that is to be here is wonderful. So thank you so much for being here and for being solid neuroshamblers.

I really genuinely appreciate it. Thank you also to the Neuroshamblers at home. I am going to be taking a summer off Neuroshambles as usual, not only to preserve my strength for the summer ahead, but also because frankly, I need a bit of a rest. It's been it's been a lot. This year it's been a lot.

Releasing a 90-minute episode every fortnight on my own is an enormous amount of work with all the other shit I have going on, and I've genuinely been pretty close to the edge sometimes.

Lisa

And how would you record with them there anyway?

Mark

Well, I do. They are in the household, but typically they're asleep.

Oh, like during the holidays?

No, I'm not. I'm not even entertaining the idea. No. So I am.

Yeah, I'm just going to have a bit of a break and I will be back. There will be a season four. I already have guests lined up, some really exciting guests lined up for season four.

So that will happen after the summer. If you need your Neuroshambles fix in the summer, there's a back catalogue of sixty two episodes.

Lisa

And your social media.

Mark

Yeah, exactly. And yeah, I may well put some updates on my ill advised trip with my kids abroad. Depending on how bad it goes, if you don't hear anything, it's gone really badly.

So, yeah, in the meantime, though, if you want to contact me, you can email hello at neuroshambles. com or follow me on the socials on Instagram, Facebook, or TikTok. I think that's about it for now.

All that remains for me to say is have a nice life.