School "Avoidance": Part 1 - What it is and how to spot it | Heidi Mavir

TRANSCRIPT

Mark

Hello, and welcome to episode 58 of Neuroshambles. It is lovely to have the pleasure of your company again, Neuroshamblers. So thanks for joining me. Apologies that you've had to wait a little bit longer for this one while I navigated the summer half term, but I'm back in the groove now with an episode that I hope you'll agree is worth the wait. It's another one of those that I optimistically thought might fit into a single episode, but which actually ended up as such an interesting discussion with my guest that I've been forced to split it into two parts. I'm not going to apologize. That's just the facts. It's also not going to be a regular thing. I know that the last episode was also a two-parter. It's not a new format for Neuroshambles or anything. It just happens to be that the last two topics I've looked at have been particularly naughty ones to discuss. Anyway, as well as the topic of the week, I'll also have some Neurodiversity Champions, some tiny epic wins, and some of my favourite ever what the flip moments. So look out for those. I'm not going to drag my heels any longer. Let's get it on.

SECTION INTRO

Meet the guest.

Mark

So this week's guest needs no introduction to regular Neuroshambles listeners, but for those of you who aren't aware of who she is, she is a best-selling author, a public speaker, and a tenacious advocate for SEND families. She's also a late-diagnosed neurodivergent parent to a now fully grown neurodivergent human, so I consider myself very privileged to be able to draw on her wealth of lived experience on this Bumpy journey, we're all going through. I am delighted to be able to welcome back its Heidi Mavir. How are you doing, Heidi?

Heidi

Hi, you know, it's so nice to have someone pronounce my name correctly without me having to even tell them. God love you. I do listen. I do listen. I know you do. I know you do. That's why I've come back.

Mark

People

Heidi

like doing weird variations of that then? I've been called Maveer all day today in the tribunal. I'm just like, I'm not even going to correct you anymore. Anyway, it's fine.

Mark

So obviously I'm aware of your setup, but any new listeners or any returning listeners with short memories will not be familiar with what's going on at your So tell us about the neurodivergencies at play there.

Heidi

Okay, so as you've mentioned, I'm a late identified neurodivergent adult. Identified and out in the world, in the wild, as an autistic and ADHD adult. I am the parent to Theo, who is now 21.

Mark

21,

Heidi

shock horror. Our journey started I mean, it started when he was born, but our journey into neurodivergence started when he was fourteen, almost fifteen. and he crashed out of school pretty spectacularly, went from full attendance to no attendance at all over the period of May half term to Halloween. And we started then on a journey from, well, he's just like me. What do you mean? He does all these weird things to, oh my God, we're both neurodivergent as F. So that was six years ago. we went through a bit of a a hell of a time, which I wrote about in the book. I never mentioned the book. It's called Your Child Is Not Broken.

Mark

It's a wonderful book, by the way.

Heidi

It's a Sunday Times bestseller, don't you know? And we just want to confirm that we've to date sold 50,000 copies.

Mark

Nice.

Heidi

So we went through tribunals and Pupil referral units and exclusions and mental health crisis and not being able to secure diagnosis and having to give up my career and him not being able to move His bedroom, and when we got out of the other side of that, after around three years, I kind of had this: right, I'm gonna use all of this stuff that's in my head to try and help other people. Because when we were going into that. I really struggle to find reliable information.

Mark

Absolutely.

Heidi

So that's when I wrote the book. Don't know if I mentioned I wrote a book. And I also founded EOTAS Matters. So when Theo eventually recovered and we got him a good package of support He was able to go back into education after almost, well, over two years out of education. , Three years actually, sorry. He was able to go back into college. He went to college, studied animal management, and he's now at university. He's just about to finish out his foundation degree in animal management, and next year he'll do his honours top-up in applied zoology.

Mark

Amazing.

Heidi

Smashing it out of the park.

Mark

Yeah, incredible. Well, thank you for introducing me to your setup. Let's crack on with the topic of the week because there's loads to discuss, and I think it's going to resonate with a lot of neuroshamblers out there.

SECTION INTRO

What's the topic of the week?

Mark

So the topic of the week this week is one that unfortunately many Neuroshambles listeners will have encountered, and that is emotionally based school avoidance or EBSA, or there's many other terms for it, which we'll get into soon. It's a topic that has been requested quite a lot of times from my listeners. And if I'm honest, it's one that I've sort of held back from doing for quite a while now because It's quite an emotional one, and it impacts so many of our listeners. And being blunt, I didn't want to fuck it up, right? You know, I'd get one shot at each of these topics, and sometimes they're so big, I sort of. Hold back a little bit because I want to do it justice. That is the very reason I decided to get Heidi on to discuss it because obviously Heidi's account of EBSA was the first one. that I read about in her wonderful book, Your Child Is Not Broken, which is incredible. If you haven't read it, Neuroshamblers, it's brilliant, and I heartily encourage you to invest in it. I'll put a link to that in the show notes. But I obviously know that Heidi has not only got lived experience of EBSA with Theo, but has also been in the trenches with many other families. fighting schools and LAs to try and get the right accommodations for the for other people's children, as well as being inspired to create her own consultancy business to support families whose children need education outside a traditional school setting, which is EOTAS Matters. Again, link in the show notes. So I guess where we start, Heidi. is unpacking what EBSA means because there are so many different terms for what is essentially the same thing depending what angle you look at it. So school refusal, let's start with that nonsense. Oh, yeah. Because that's one that is very often used by people who don't know better.

Heidi

School refusal was the term that was used a lot when we were first in this. And I guess for people who are seeing how it's presenting for a child, and when you're ringing a school and saying, my kid will not come to school, then it then school refusal, I guess. Semantically makes sense, right? Yes. One of the challenges that we have in the community is that for many of us, and not all, but for many of us, our kids are barriers to attendance in the neurodivergent space, particularly. are kids who have demand avoidant profiles. So 75%, I think the last number was from the PDA Society, of kids with pathological demand avoidant profiles. have barriers to attendance or are out of school. And huge, massive number. And a huge percentage of my community are PDA families. So we've had a pushback as a community. And actually, I think to be fair, the language and education has moved on from school refusal a lot. And we are hearing more emotional based school avoidance. used as a term. And generally, we're hearing that if you use that term, educators might understand what you mean. Whereas previously you had to say school refusal, which a lot of us had a big problem with saying.

Mark

Absolutely. I mean, with the EB part of that, the emotional base isn't Kind of more recent edition. So it was just school avoidance, wasn't it? And then

Heidi

school avoidance, school refusal. I mean, truancy is what it was called in the old days.

Mark

Yeah, but neurodiversity didn't exist in the old days, Heidi. We all know that.

Heidi

Planets didn't exist before.

Mark

Exactly.

Heidi

They're a recent discovery.

Mark

Yeah. Um, but actually calling emotional based school avoidance is Still not ideal for reasons, you know, I'm sure we'll go into, but describing it as emotional based is really important context for what's going on with our kids because

Heidi

it's certainly more helpful for kids who are experiencing mental health difficulties or distress or shutdown and we'll talk about that probably a bit more than saying school refusal. Within my community, we lean into barriers to attendance as a phrase because it shifts the focus from the difficulties and the dysregulation and the distress of the child to the environment and the fact that they're experiencing barriers and it's the job of the adults around them to remove those barriers or mitigate those barriers versus emotional base, you know, oh, especially when it's female presenting kids. Oh, she's just emotional, she's just anxious. Right, yeah. You know what I mean? That language, it's it 's it's heavily gendered misogynistic language as well. So we try to lean away from that and lean towards barriers to attendance. My personal thing is whatever works for you as a family, use that language and we'll find the ways we can to support you to use whatever language fits best for you.

Mark

Yeah, I mean,'cause I think with school avoidance or school refusal, there is the the air of blame is attached to that, isn't it? It 's the child that is you know, the school... The school is fine. I don't know what they're banging on about. It 's they're refusing to come to this wonderful educational dreamland that we've offered up for them. So obviously, yeah, barriers to attendance, you know, and then you we can look at the barriers. It feels more collaborative as well.

Heidi

And it feels less emotive. And like, don't get me wrong, there's room for emotion in these conversations, but when you're trying to have a conversation about what accommodations should be made If the situation you're trying to accommodate is an emotional situation, then all the conversations are about how do we How do we get this child to stop making such a fuss or to stop being s just so damn inconvenient? Versus if we're having conversations around barriers to attendance, we could discuss what those barriers are and what scaffolding we need to put in place to mitigate those barriers. So that's my preferred terminology.

Mark

Another one I've heard, just to go through them , emotional based school non attendance. Which again takes away the school avoidance side of that. But again, it is putting the onus on the child. They are non-attending. You know, attendance is the expected paradigm and they're not attending. But yes, there's that. The PDA Society championed the term school distress, which I quite liked. I don't like school distress, that's not what I'm saying. But I like the fact that it highlights the child's internal feelings.

Heidi

Yeah.

Mark

Because I think that gets lost in all of this, that there is so much dysregulation. And overwhelm that these kids are grappling with every day, this emotional turbulence that makes it nearly impossible for them to face going into school settings for many of them, that calling it school distress, I think, is a sort of a move towards recognizing their feelings. Kieran Rose wrote an article recently, which I thought was interesting and is probably contentious in the way that Kieran Rose very often is, but it is equally as fascinating in the way that Kieran Rose often is. And that was the term school induced trauma. Again, similar to school distress, you're s but but sort of going even further than that and saying that actually these kids are experiencing trauma in the school environment. Because obviously, if we call something school refusal or school avoidance, we sort of starting from the wrong assumption there that school is fine, our kids are, you know, for whatever reason, turning their nose up at it, and it's the kids that need to be dealt with. And if you call it school-induced trauma, that's a very different conversation.

Heidi

Yeah, 100%. And we're talking about trauma and like people in the space, the psychotherapy space, especially Kate Jones, has done a lot of speaking on this. That trauma with a lowercase T, not an uppercase T.

Mark

What's the distinction there?

Heidi

The distinction within psychotherapy And forgive me, I'm not a psychotherapist, but I speak for her on a fairly regular basis, and we're still friends, so I think it's okay. You know, if someone was going to get a diagnosis of PTSD, for example. Yeah. Then the trauma in that PTSD diagnostic criteria is life-threatening episodes or episodes. So that's what you're getting. Whereas. If you were pursuing a diagnosis, you could get a complex PTSD diagnosis, which recognizes that the cumulative impact of multiple lowercase T traumas have the same impact and displays often in the same presentation. So when we're talking about trauma, that is one of the challenges. If we We just need to be ready if we're going to say trauma that someone's going to come back with, yeah, but it's not PTSD. So it 's splitting out that kind of like using the language that works for us. And also making the language fit for the situation. You'll have some educators who will when you say school-based trauma, they'll be like, yeah, you'll have other educators who will roll their eyes as soon as you use the word trauma. So you've just got to work out what works best.

Mark

Yeah, and it's very often what the person that you're talking to is You know, because if you talk to a head teacher about it, like, my school's not traumatic. And it's like,

Heidi

precisely that. And I have sat in meetings with decision makers, and I know that the words I need to use are school refusal, even though I hate that term. because I've seen paperwork that they've used that term in. So I use the same term. Yeah, that's the thing. And then I whisper to this parent afterwards, I'm just saying it to keep them happy ,

Mark

navigating that can be tricky. Yeah, you're right to kind of Point out that it's not trauma, as in this seismic

Heidi

It can be

Mark

No, it can be, but it is this sort of drip feed, this slow drip feed of factors that it's certainly felt in that way over time. And when you get to the kind of the end result of that, which we'll get on to, which you know is potentially burnout, that's deeply traumatizing to to kids who go through that as well.

Heidi

And we do sometimes have that situation without going too off topic where we have kids who are turning up for diagnostic assessments. And because of their presentation, they're not getting the diagnosis of, for example, ADHD because their presentation can be explained by trauma. So we've also got that extra nuance of There aren't very many neurodivergent people who don't have plenty of trauma. I mean, being a human being is fairly traumatic. Being a neurodivergent human being is deeply, deeply and extra-traumatic. So, yeah, I mean, I'd stick that on your list. Looking forward to your episode on trauma. Don't ask me to come and do that.

Mark

Okay, it will go on the list. If you could suggest someone, that'd be good. Um So obviously, there are lots of different terms for what we all have probably witnessed with our children to a greater or lesser degree. And what is very, very common amongst neurodivergent kids when it comes to school. We should probably agree on something to use throughout the rest of the episode if you can't keep switching between it all.

Heidi

I mean, can I make a case for barriers to attention?

Mark

Yeah, you absolutely can. Yeah, yeah, yeah.

Heidi

And with the kind of the caveat as well, that whilst we are speaking about the impact on Mental health predominantly today, I think. There are tons of other barriers to attendance that I think we could throw into the list now. so that people who are listening to the episode might think, oh, actually, that's us. And these things sometimes show up early in the journey. So perhaps you're not seeing it reflected in your child's presentation yet. But they're part of the picture that can develop into emotional based school avoidance. Barriers to attendance. So they're not all necessarily linked to anxiety or emotional-based avoidance in the first instance. So we see barriers to attendance experienced by the traveller community because of the nature of those lifestyles that are more transient and moving around different schools. We see barriers to attendance linked to lack of permanent housing. Physical bullying. So we know that that's distressing, but we do know that that's a barrier to attendance and a child may not share that that's why they don't want to be in school until that gets much worse.

Mark

Yes.

Heidi

So physical or spoken bullying. Safeguarding issues. So for example, if you have a family who are subject to child protection and perhaps there is a history of domestic abuse or domestic violence in the home. Perhaps the barrier to attendance is that one or other parent feels it's not safe for their child to be in school because of the risk from the other parent. And so that can be a barrier to attendance, and that can impact a child longer term. Continued exclusions, continued behaviour sanctions, we'll talk about that. Parent or carer poor health, whether that's mental health or physical health, or both. So if you've got a disabled parent, you're much more likely to experience barriers to attendance. Because a parent or carer may not be able to get that child to school physically. Same applies for financial hardship in homes. So if you can't afford a bus fare to get your kid to school, it's harder to get your kid to school. And the two other underrepresented groups who experience higher levels of barriers to attendance are black and brown children, so children who are not white skinned or not white presenting. and because of the inherent racism within our society and LGBTQ and gender nonconforming kids.

Mark

But crucially, the focus is shifting away from the fact that they're just refusing or avoiding, but actually that there are other factors at play that are not the fault of the child that is not able to attend. It is environmental or Situational.

Heidi

Yeah, I mean, my position is always going to be: I very much doubt it's the kids' fault in every instance. Kids do well when they can do well.

Mark

Yeah.

Heidi

If you take one thing away, that's what I would say.

Mark

Yeah, absolutely. So however we choose to define it, barriers to attendance is something that a disproportionately high number of neurodivergent children face. And I think it's important to look at specifically why the school environment is so uniquely ill-suited to so many of our kids. Not all of them, there are some that. And that it blows my mind. But there are some that are able to cope in school, but for a huge amount of them, at least two-thirds of mine, third one's pending. I'm just keeping an eye on that one, but Otto and Jay both had significant barriers to attendance. India... Jury 's out. I'll wait and see. I'm not going to get complacent, that's for sure. But the point is that for them, school isn't just tricky or something that they don't enjoy. it can be genuinely unsafe for them. Yeah. Not in a way that's obvious to people who don't understand neurodiversity either. I mean, I think 'cause depending on how your child presents and their blend of neurodivergent traits, there can be so many facets of the school environment that neurotypicals literally don't even consider. It's not even a thing. They would not think about the lighting. For example, it's not a thing unless the lights are off, in which case maybe they you know, they might have a grumble. But it can be caused by so many facets of the school environment. So for autistic kids Noise is a huge thing that the loud rights schools. I mean, I've said this before in Neuroshambles, but have you been into a school lately?

Heidi

Smelly, noisy, busy, hot, sweaty.

Mark

It is a sensory fucking nightmare

Heidi

sensory nightmare. Uniforms, scratchy labels. Not being able to get your blazer off.

Mark

Echoey buildings, blazers in general.

Heidi

Not being able to hear because it is so echoey, there's so many people, and if you've got auditory differences, you can't hear what's being said.

Mark

So that's just the sensory stuff. Then you've got the social complexities of school as well, of like, you know, friendship groups and cliques, and especially at that age when you're starting to try and find yourself and you're having to navigate friendships. That's a shit show for our neurodivergent kids. Also, the number of transitions that happen. I mean, we know that a lot of neurodivergent kids, autistic kids in particular, have difficulty with transitions. And school is just full of them, like lesson to lesson, room to room, teacher to teacher. Then there's there's lunchtime and Oh, dude, I'm getting stressed even just talking about it.

Heidi

Really. And I was in a tribunal today, and the occupational therapist was talking through the triangle of needs. Have you seen this?

Mark

No, I haven't.

Heidi

which basically the bottom layer of a pyramid of needs is emotional regulation. And so a child any child, regardless of their divergent profile or not needs to be able to regulate their emotions to be able to engage in learning.

Mark

Right.

Heidi

And for a lot of our kids, it goes and I'm probably remembering incorrectly, but it goes in some order. Emotional regulation, executive function. relational safety, actually doing the thing, the learning.

Mark

Right, okay.

Heidi

So if our kids can't regulate their emotions and understand the impact that the sensory environment has on their emotions and has on their ability to self Monitor, self-regulate. If they can't regulate and they can't tap into those executive functioning skills, like They've told me to get my pencil case out. Right. My pencil case, that's the thing that has pencils in it. That's in my bag. There's the zip. Undo the zip. Put my hand in my bag. Oh my Christ, that's a banana. Don't put bananas in your autistic kids' pat lunches. There are a handful of us in the autistic community who like a banana. Not many of us. I'm partial to a banana. I'm an extreme outlier in that respect. But you know, that's a banana. Pull out your pencil case, open your pencil case, open the pencil case. Oh my Christ, they didn't tell me what color pen

Mark

Yeah.

Heidi

All this is dysregulating. You know, like unclear instructions that a neurotypical or a a not challenged child would not have difficulty with, those multi step instructions that the kid is having to do inside their own head, when you're emotionally dysregulated, are practically impossible.

Mark

I mean, for my lot, for Otto in particular, like, it doesn't even have to be emotionally dysregulated. He could be absolutely, you know, absolutely regulated and still have real trouble with Multi-layered instructions, you know, with my own.

Heidi

Just one instruction. I remember saying to Theo once, go and get your shoes. I don't know if I've told you this before, go and get your shoes. He came back with all of the pairs of shoes that he owned.

Mark

Do you think you were doing an audit or something? It's like a snap audit of your footwear.

Heidi

Because I would say go and find the pair of shoes that you would like to wear today. Just go and get your shoes.

Mark

Yeah.

Heidi

You know? And we laugh about it now, but he'll often say to me, You didn't say that, mum, you didn't ask.

Mark

No.

Heidi

And he's not a dick. He's just like, you know, that I'm not communicating clearly, you know?

Mark

It's funny, isn't it?

Heidi

But he can do that because he's 21 and we've done all the work we've done. When he was 14, not a chance he could articulate that. And we have people saying to our kids, what is it about school? Like that in itself, being able to label what it is about school, they don't know. They just know that their brain is on fire and they can't think clearly and they want to run, and someone put a banana in their bag. Do you know what I mean? It's bananas, right? I'm literally sat with a packet of bananas on my desk behind this computer right now.

Mark

S, Heidi.

Heidi

Yeah. Object permanence for the win. All of my analogies tonight will be the banana based analogy. So you know, but there are lots of things that impact our kids so it's the sensory stuff, it's the noise, the smells, it's how busy it is, it's their ability to regulate their emotions or not. Yeah. It's

Mark

sitting still is another one. Like being seen to be paying attention in the way that The teachers

Heidi

looking ready to learn.

Mark

Yeah, yeah, that's nonsense. Because, like, yes, I've learned from Otto, who is, you know, he's ADHD spike is pretty, pretty high. And he finds it incredibly difficult to sit still. And he also doesn't like engaging in eye contact. So, to everyone looking as an impartial observer, it just looks like he's not paying attention. But he always is. Because I used to quiz him. Do you know what I mean? I used to go, What did I just say? Were you listening? And then he'd like just give me In perfect detail, be like, Oh yeah, that's just not how you look like you're listening. No. Which, for those ADHD kids, they're not only sort of being accused of not listening, but they're being told off for it. For not facing the front, not looking at the teacher.

Heidi

And when they're pulled up on it, we see this so often, when they're pulled up on it, the young person, it's usually a young person rather than a littler one. Will be like, I wasn't doing that. And then they'll be like, oh, there's a C4 for chat. Back chat. What? I wasn't doing anything. What was I doing? And they're asking for clarity and they're getting sanctioned. And before you know it, they've got a flipping detention,  and you know, and for those of our for many of our kids Being in trouble is terrifying, you know. So when you're given a detention, that's the worst thing that could ever happen. But especially if you're one of those kids who wants to do well and is leaning into your academic ability as a means to stay connected. If you feel that you're being punished In a school environment, that can be doubly distressing because it's pulling the rug out from what where you are able to achieve, which might be academic. Do you know what I mean?

Mark

So, and if you add that extra layer as well, of you know, the a lot of our neurodivergent kids feel a very keen sense of injustice, right? So you've got that. Not only are you being punished, but you're you're burning with rage because it's not fair, because you're being punished for something that you can't help and probably don't Yet, understand how to sort of articulate, or you can't really advocate for yourself in the early days, certainly in primary school. I think certainly with Otto and India. You're just burning with rage and probably shame and embarrassment and all of these, just these feelings.

Heidi

Yeah. And, you know, and so I can remember being in school, I had a maths teacher who was obsessed with look at me, pay attention, don't fidget. I'm ADHD as right, so I'm there with a pencil case clicking my pen. And this teacher, his name was Mr Rothwell. He's dead now, and frankly, I'm pleased about it. But he used to come to my desk. I sat beside a window and he would open the window and throw the things off my desk out of the window.

Mark

You're shitting me.

Heidi

My pencil tin, my very precious pencil tin it would get lobbed out the window. Or he would be at the front of the classroom and he would throw the board rubber at you.

Mark

What do you do when he launches your pencil case out the window? Because now you're not ready to learn. And you're now being told told off.

Heidi

Try not to cry because then you're going to get shouted at. It's terrifying. It's you know, the board rubber being thrown at you is assault. You know, and I and I don't think that there are many teachers who would throw board rubbers at kids' heads nowadays.

Mark

That was a thing, though, in my day as well. We had a teacher who used to grab kids by the hair and stuff.

Heidi

There are equivalents. There are teachers who come to your desk and slam their hand on your desk to get your attention. Terrifying. You know?

Mark

Yes, yes.

Heidi

There are teachers who. give you sanctions for being distracted for ADHD kids massive issue, or for rocking on your chair, or for bouncing your knees. or for humming or for whatever it might be, chatting with your friend, checking things, processing out loud. And we also get the thing with ADHD as where not only do they get sanctioned for being Overwhelmed, they get sanctured for being underwhelmed. So, our ADHDers need to be engaged. They need novelty They interest. So we'll sometimes see, and you look historically at ADHDs who weren't diagnosed in school, we'll get things like they're a daydreamer, they don't pay attention, they're often in another world. You know, managing that level of whelm as kids. It's not just being overwhelmed, it's also being underwhelmed. When kids are underwhelmed, they appear bored, sometimes they might do more of the thing that is disruptive in the class. They might ask more questions because they need more from a teacher. all of those things are a bit annoying. So they're getting censured for those things too, because no one understands that their ability to regulate their attention is significantly impacted compared to their peers and accommodations aren't being made.

Mark

So that's a massive thing for ADHD. Yeah, and also the shouting out thing as well with ADHD as of going, I know this, I know this, I'm going to say it, and then just sort of shouting out and then getting told off for shouting out. It's like, you're asking the question. This is the thing with Tam, actually, which used to drive me crazy. I would start a sentence, and Tam would already know what I was going to say and answer it before I'd finished it. So , I might not have. Been saying that. I mean, I was. It's not their fault that your brain isn't quick enough. That's not on you. I know. I'm trying. I'm trying. So then I'd end up in detention and it was just a shit show.

Heidi

Yeah. That's why it never worked out. There's so much. You know, like, but I think the key for most of our neurodivergent kids in school is the overwhelming or underwhelming of their sensory system and the impact that that has on their ability to regulate their attention, their executive function and their emotions.

Mark

Yep.

Heidi

And that is a bin fire, right?

Mark

And that's not even the PDA kids because with PDA Just you just common or garden ADHD and autistic kids, right? But PDA kids, there's that extra level of the hierarchy, the assumed authority at school. You know, like a teacher walks in and you have to, you're expected to automatically give them deference because they

Heidi

had to stand up when a member of staff came in the room.

Mark

Did you go to school in the 1820s?

Heidi

I went to school in the 1980s. Yeah, so very strict.

Mark

set up. Was it in a mill?

Heidi

I mean. What I will say about my school, it was horrific. I hated school. The only thing that got me through was that I was academically Engaged and I loved learning. That's what got me through. And I went on a school bus that my dad put me on and my dad picked me up off. So absconding was pretty impossible. And it was in the middle of bloody nowhere. But the class sizes were tiny, and that's the only reason I got through school. Okay. For sixth form, I went to a big high school, managed because of the things I chose. I did performing arts, really valuable. And English lit. And the classes were small. Religious education, again, classes were small. And then when I went to uni, the wheels came off and I had a massive, massive breakdown. Because of the scale of it. Because I've been masking and fawning for just so long.

Mark

We'll get onto that later because that's the problem.

Heidi

Yeah, we'll talk about that. But yeah, it's my. opinion, and it is only an opinion, that for neurodivergent kids, without the means of them being able to understand their own sensory systems and self-advocate and have a person to co regulate with so they learn co regulation before they can learn self regulation. All we're doing is waiting for the wheels to come off. And they will come off eventually without those skills.

Mark

Without accommodations in place. Yeah. I and again, I refer to this a few times on Neuroshambles, but it is worth just zooming in on a little bit of how many times in a day at school our neurodivergent kids are corrected, on even on just a low level Right. So this isn't detentions, but this is, you know, sit still, face. Don't run. Where's your stuff? Don't shout out. All of these. tiny corrections that neurotypical kids broadly are free from, these micro corrections, these microcriticisms. And just the impact that, that must have on the self esteem of our neurodivergent kids in the school environment. I constantly feel Horrible for Otto. I think Otto used to get it loads. It's different now because the school understands his neurotype and how that presents and what they can do to accommodate it, which is great. It's fabulous. But before then, before it got to that point, and with Jay as well, just these constant corrections must have been devastating.

Heidi

And also, let's not forget, so the corrections are a thing. For our ADHD is the rejection sensitivity is strong in many of our ADHD. And for PDA kids, it's not just the demands and the corrections coming from outside, it's the demands and corrections they're making to themselves. So we have PDA kids who really want to do things and their demand about avoidant profile, especially when they're not regulated or when they're in distress means that they have this internal demand that they can't meet. The distress of that that no one else is even a part of

Mark

You know, and that triggers a nervous system as well. It's not just, you know, I'm not doing it. It actually has an emotional impact on their body. that is completely unseen and seemingly invisible to you know, like the teachers will have no idea that's going on.

Heidi

Yeah.

Mark

Brain on fire, brain on fire. Yeah, so when you sort of line all of this up and you look at all the different moving parts, these different cogs in the machinery of school it's no wonder our neurodivergent kids are are struggling in so many different ways. And it's not academic all the time. No, it doesn't

Heidi

and not always. I mean sometimes it can be

Mark

it can be, but yeah, but the barrier isn't the educational side of things. It's the institutional side of things. The environment. So, what I wanted to look at, because there are a lot of neuroshamblers on various different stages of their journey. With their neurodivergent kids, and some are sort of trying to work it out, and some a bit further down the line. And I wanted to have a look at what school avoidance looks like in kids who were going through this inner turmoil, if you like, because I think we missed a lot of the early signs Tam and I, and we were on it relatively quickly. I mean, like, it was still probably two years behind where we should have been, but we still you know, we spotted it earlier and we understood his neurotype earlier because we got him diagnosed earlier. So that helped. But there are a lot of signs that we missed out on. And I think it's worth looking at what barriers to attendance looks like in our Neurodivergent Kids. Because if any neuroshamblers are witnessing this in their kids, and probably just going, oh, this is what kids do, right? Very often, it's not. So, the biggest one for me. in the early days was the battleground in the mornings. The constant sort of certainly around going to school. And wi this is outside of the, you know, executive dysfunction that comes with neurodivergent kids. Just not being able to remember their instructions to put their shoes on, get their bag, put their coat on, get out of the bed. Not even knowing where their shoes are. No, it's not that, but like not being able to get out of bed, for example. Or having an actual meltdown, getting ready for school. This was a big one for Jay, and this is one that we were a bit too slow to pick up on. but he used to get furious because his shoes right, his Velcro shoes couldn't go tight enough. So he'd sit there in tears trying to pull them as tight as, like, they can't go any tighter, Jay. They're as tight as they can go. And we, I don't know what we put it down to, but that is such, like, now I know, that is such a strong sign that this isn't about the shoes. It's about your overwhelm, and your overwhelm isn't the footwear.

Heidi

And had you known that, and had you had good advice, probably from occupational therapists, you would have perhaps been able to go, okay, take his shoes off, squeeze his feet for him, let's regulate him. He just needs that. He needs that deep pressure in the compression. And then you probably could have got his shoes on and it would have been all right again. So it's interesting. The meltdowns, that like that morning Just whatever the hell.

Mark

Shit show. It's a shit show.

Heidi

Shit show. Morning trash fire, especially if there's more than one child. Christ Almighty, I don't know how people do that.

Mark

Three, three of them.

Heidi

I had one and it almost killed me. I don't know what. I don't mean the labour, I mean like the raising of him. So, yes, that meltdown, that kind of dysregulation, and even more like another step back from that, that I think we a lot of us miss and we kick ourselves for it afterwards. And I hear from parents all the time, I wish I had known. If I'd known, then why did no one say to me, why didn't I spot these things? For me, if you've got a kid who is not sleeping

Mark

Yep, that's a big one.

Heidi

Either can't get to sleep, can't stay asleep or can't wake up Right. And let's be honest, that's a lot of ADHD is. But I never slept as a child. I couldn't get to sleep.

Mark

As well as the overwhelm that Jay was experiencing There's also which is really frustrating the deliberate go slow. Did you have that with Theo? Of just like, come on, get a move on, let's go. And they would deliberately.

Heidi

Especially demand avoidant kids.

Mark

Yeah.

Heidi

Like, oh, but before we do this, I obviously need to groom the cat.

Mark

Like, dude, we don't get fined by the government if the cat is ungroomed.

Heidi

Yeah. Or, um , you know, I can't I can't find, which might not even be the I can't find, or the presentation, which is Doing all you can to like I have I don't know whether you've had this, you've got a PDA in your house, right?

Mark

I've got two of them, yeah.

Heidi

Right. Have you ever had the I can't do that, my legs don't work? Love that?

Mark

My favourite one was when we went to a playground with Jay and we needed to go and he didn't want to go and it was across a massive field and He said his legs didn't work. And we watched him as he rolled across the entire field towards us. And like other people are watching it going, what the fuck is going on with this guy?

Heidi

I've also had, I'm sorry, I don't speak English.

Mark

Oh really? said in English. Nice. Nice.

Heidi

Like and it's not int it's I mean it is a delay tactic and it's kind of It's pretty genius because it's I don't think it's logic even. It's just their brain is just firing out whatever they can to avoid the demand, and you get some incredible stuff.

Mark

Flood the zone, isn't it?

Heidi

Yes. Yeah, absolutely. My bum might have fallen off. Could you have a look? Do you know what I mean?

Mark

Yeah, and it can be very that's the thing, that PDA is not always a no. You know, it's very often just a very long alright.

Heidi

A yeah, but.

Mark

So, like coming downstairs on their bum instead of walking downstairs, India does that all the time. So, yeah, there's a lot of that in terms of the battleground of trying to get them out on time that I definitely recognise in hindsight was that reluctance to go to school, particularly with Jay. Then there's the sort of getting to the school gate, which I know you experienced, of that freezing getting to the school gate, or going completely silent. When they actually get to the school or get to the car. That's shut down, yeah.

Heidi

If I got him in the car But then we would get to where we were going and he would be like a statue. He couldn't move. He couldn't speak. I couldn't snap him out of it, and he definitely couldn't get out of the car.

Mark

Yeah, which is heartbreaking because this is the kid that, you know, an hour ago. Was fucking and you know, whose bum you were looking for. And then you see this shift, and it is, you know, I used to see it in Jay. The nearer you got to school, the more this just sort of cloud, almost, this sort of storm cloud hung above them.

Heidi

I don't know if this is a good time to mention. those trauma responses that we're all familiar with, the fight and flight, right? And freeze to a degree. I think we're familiar with that. But actually the two extras that are part of polyvagal theory, we've got fight, flight, freeze, we've got fawn, which is the masking, the assimilating and we've got flop. And that's the shutdown. And a lot of our kids experience that shutdown. Kids who have got a profile that means that they experience situational mutism when they can't speak. That's the shutdown response.

Mark

That's an India thing, yeah.

Heidi

And I get that with Theo now, even. You know, like if he's overwhelmed, if people are asking lots of questions, we get it in medical environments a lot. He's had a lot of medical stuff recently. and we go into medical appointments and I say to the person that we're dealing with, Theo's neurodivergent, I'll start speaking. When his situation switches off, he'll join in. And you can see them looking at me like this woman is absolutely bonkers. That's what we do, though. And that's what and that is what happens. And once I start speaking, and then Theo's nervous system is regulated enough, he will join in and he'll be able to communicate. But we've had professionals say to us, Don't be silly, you're twenty years old, your mum doesn't need to speak for you.

Mark

Really? It's like you're a medical professional Out of interest, what's the difference between freeze and flop?

Heidi

So, freeze, in my experience, but I'm not a Polyvagal expert. But freeze tends to be in the moment. So the not being able to get out the car, right. I think that's a freeze. Yeah. In my experience of my child and everyone's different. Flop is the can't get out of bed for three point five months. Right, okay. So it's it's the next level, right? So we've got regulated, and regulated doesn't necessarily mean calm, it means in the state of arousal required for that activity. So it doesn't mean necessarily deep breathing and humming. You know, if you're running a marathon, you don't your level of regulation is different to if you're trying to get to sleep, right? But we've got Fight and flight, coming out aggressively. We've got running, and it can be sometimes can be physically running, but it can also be the flight can be all of those things that we've talked about that are, you know, I'm sorry, I don't speak English. We've got fawn, which is the masking. And then as it drops down, we've got freeze, and then the step below freeze is flop. And what happens in our nervous system is that our brains make these decisions for us every second of every day. And in non neurodivergent brains, they have the ability to regulate between those states. pretty fluidly and they're not even aware. But for whatever reason, neurodivergent spiky profiles especially jump between states more quickly and get stuck in those states more readily. So you'll often find this is one of the challenges with some kids with barriers to attendance, and this was certainly the case for Theo. Like we do have kids who are, you know, like presenting in school, like turning tables over and, you know, like threatening to stab people and stuff like that. Yeah. I'm not laughing at that. No. I mean, I kind of am, but I'm not. Those kids are easier to spot. The kids that are harder to spot are the faunas and the freezers because they they're not inconvenient in classrooms.

Mark

Yes,

Heidi

they're quiet, they fit in, they mask like mad. and they are working so hard not to draw attention to themselves that they completely slide under the radar.

Mark

Yes, which brings us very neatly onto one of the other presentations of A Barrier to Attendance with our kids, which is meltdowns after school. And that's caused very often by this masking that you've been describing, right? But holding it in It's one that I covered in detail with Pete Warnby in the masking episode of Neuroshambles. So, if you haven't already listened to that one, that will have more information than this particular section. And check that one out because it is a really good one. I love Pete. He's an amazing. Yeah, he's great. And it's how a lot of autistic kids survive in what is quite a hostile and overwhelming environment of school. And as you say, it's sort of. maybe copying other people or just they don't want to stand out, like you say, they so they keep their head down and they just do what everyone else is doing Just to try and fit in.

Heidi

That assimilation. And we get that for neurodivergent kids across the board in different environments. I've got a friend who's got a neurodivergent kid, and she talks about how that child. Has a different persona for every environment. So she has a different persona in school, she has a different persona, she's a cheerleader, she has a different persona when she goes and watches her dad at rugby. She's not Like, she doesn't have a split personality. No, it's just the level of masking looks different, and there are one or two people being her mum and her dad. who see the unmasked version of her, very often that is after she gets back in from an activity, very often after she gets back in from school it might not be a full-blown meltdown. Like we talk a lot about the Coke bottle effect, right? We shake our kids with a bottle of Coke, we shake them up all day, they get in from school, we take the lid off And it explodes, right? That is one presentation of that meltdown. Equally, we have children who mask, mask, mask all day. And when they get home, they fall asleep on the couch without entering the house. But the common theme for that and the watch out I think for parents is if you're going to parents' evenings, for example And the child that is being described to you by teachers is nothing like the child you're experiencing at home, there's a good chance you've got a masking child. So my mum used to come home from Parents' Evening and say, Well, I don't know who they're teaching, but it's not you 'cause I was an absolute arsehole at home. But I was a delight in school You know what I mean? So I wasn't an arsehole, I was just unmasked.

Mark

I mean, you just had your pencil case lobbed out of the window. I think I'd be an arsehole if that happened.

Heidi

But you know, if that is one of the tells I think for parents and carers, if we're looking for indicators that things might not be quite working for our kids in school.

Mark

Yeah.

Heidi

If you're hearing those descriptions of they're a delight. They're so polite. They can't do enough for anybody. They always turn things in on time. And you're like, what?

Mark

Well, this is the thing, that masking is exhausting, right? It's exhausting to play the role of a neurotypical all day.

Heidi

And also those parents go home and say to their kids, such a buddy said all these wonderful things about you. I'm so proud of you. Well done, you're really smashing it.

Mark

So you're reinforcing it. Yeah, of course. You're reinforcing this. I've got to keep this shit up, then, haven't I?

Heidi

And then the child is like. Okay, that's what I need to do. Oh

Mark

God. And ultimately, it comes at a massive cost to their own sense of self and their mental health.

Heidi

Yeah, absolutely.

Mark

So if your child comes in from school and they they either explode or they

Heidi

Bouncing off the walls or crashing out on the couch

Mark

They crash out or they you know shut down and refuse to speak Firstly, don't ask them how their day is. I've learned that to my cost. When it's like, they can't, just stop asking questions. I've had this shit all day, Dad. You know, they haven't said that. I've just noticed that actually things go a lot more smoothly if I just don't say anything. Not because I'm not interested. I'd love to know what they've been up to. They've been away for hours. what on earth goes on over there? But I just know that at that moment when I pick them up, it's we're not talking about anything to do with that. The other thing that you might see is kind of tears and just emotional outpourings and aggression. violence sometimes as well.

Heidi

A hundred percent. And or repetitive behaviours. So

Mark

okay, like getting all the stims out in one go.

Heidi

Yeah. So being like wired or being very you know, if we've got kids with OCD profiles, those OCD behaviors can peak. In those times of dysregulation as well.

Mark

And it's really confusing, as you say, for the parents. Yeah. Because they go into school and that's where you get the they're fine in school, right? They're fine in school. But that they're completely ignoring the trauma and the overwhelm, either side of that. So when they get through the gates, they put on this persona, if you like. And the school are almost not believing the other side of that.

Heidi

Really important to recognize that that is not a conscious decision on the part of those children and young people. Masking is not a conscious activity.

Mark

No. No, no, no.

Heidi

And actually, for those of us who have done the work to unmask, that is a job on its own. Do you know what I mean? So it's not that they're acting or pretending it's that their sensory and nervous and emotional regulation system is hardwired to Assimile. It's a survival instinct, isn't it? It is. And then we also it's that you know, we all do it to a degree. We're pack animals, right? But then we also have kids again, multiply marginalized kids. So black children double mask because they assimilate by diluting their blackness to be acceptable in those environments. Because you don't want to be an angry black kid, right? And then they're masking their neurodivergence. LGBTQ kids are double masking because they're masking their queerness and they're masking their neurodivergence. So it's doubly impactful for those kids who are multiply marginalized.

Mark

Yeah. Absolutely.

Heidi

Kids with physical disabilities or physical differences or pain. Those of our kids who have Ehlers Danlos or who have stuff going on with their gastrointestinal stuff, which a lot of our kids have, they're masking that discomfort, that physical discomfort, and they're masking their neurodivergence.

Mark

Yeah, absolutely. Another of the facets of what barriers to attendance can look like with our neurodivergent kids are those physical symptoms. Right, so not obviously not ones that are medically diagnosed, but the complaints of like, oh, I've got a stomachache, you know, you have that a lot. Particularly a Sunday evening. It's amazing, isn't it? The stomach ache comes on a Sunday evening, or headaches, or nausea, or vomiting, or feeling dizzy, all of that, or difficulty breathing, loads of these symptoms. that our neurodivergent kids might complain about before school that are not made up Right? They are genuine. They it's like it's the nervous system kicking in.

Heidi

Did you know that you've got brain cells in your gut?

Mark

I didn't.

Heidi

And so when people are saying, oh, he's complaining to get because he's got a sore tummy, but it's just psychosomatic. I mean, we do know that neurodivergent people have other co-occurring conditions and they're more common. So a lot of us have gastrointestinal differences because, newsflash, our nervous system is our whole body, not just our brains, right? And there's been research around the fact that we have brain cells in our gut. So if you're neurodivergent, surely it follows that a tummy ache might not just be about your tummy

Mark

Yeah, yeah, yeah.

Heidi

And we know, don't we, from when when kids are younger, if a child tells you they've got a headache or a tummy ache. you check all the things, right? Have they still got a temperature? Right. Yeah, yeah, exactly. Do they need tired? Do they need rocking? You know, it's kind of that. It's that kind of thing. There's an amazing organization called Audacious Humans. They're incredible. Martha and Jen. Probably talk about them later, but they have this thing called the sensory detective, and they show parents how to look at these symptoms and go, It's probably not just a tummy ache. There's probably more going on, and this is what it could look like, particularly if there's a pattern. If, like you say, if every Sunday night your child has diarrhoea, unless you're giving them the same food every Sunday and it's given away. Yeah, unless your Sunday roast is. I mean, it could be stuffing. Stuffing gives me terrible wind, but you know, do you know what I mean? It's like that thing of recognizing those patterns and knowing what that can mean. It's so funny when I was a kid. My mum had this thing where I feel like she knew more than we knew. If we told my mum that we had a headache, the first thing she'd say would be, Do you need a poo? A headache.

Mark

I've like I had tummy ache, that makes sense. But

Heidi

a headache. I've got a headache. Do you need a poo? Oh, I think I might. And I think it's because she probably had the same sensory profile as I did.

Mark

Oh, okay.

Heidi

She had a headache. She needed a shit.

Mark

Did that work?

Heidi

Yeah. Even now, I'm like, I've got a headache, do I need a purge?

Mark

Genuinely, that's fascinating. Genuinely fascinating.

Heidi

So I'm not saying there's not a thing for everybody, but there may be things for your child that if they have a thing, it means something else.

Mark

Yes, that's what I'm saying. That like these physical symptoms are a a little signpost, especially if you look at it around the school day.

Heidi

Yeah.

Mark

It's a signpost and it's not made up. They're not trying it on. Like, you know,'cause it's easy to assume that they just don't they're just trying to get off. It 's like, no, they probably are actually feeling it and it is caused by The wretched anticipation of what's about to come.

Heidi

And also, a lot of our neurodivergent kids have differences in intraception, right? So they might be telling us that they have a stomachache because that's how they're expressing what they're feeling in their body.

Mark

Yes, absolutely.

Heidi

It might not be a stomachache. It might be just they're feeling we used to call it fizzy. When Theo was like, I feel fizzy, that was like his way of saying his disfigured. Or I'm feeling a bit of this-ness, that was that he was understimulated. I feel a bit of business. Okay. Basically, meaning we had to get upside down on the couch or bounce on something or squeeze something, or do in our house what we call a human blanket, where one human lies on the ground and the other human lies on top of them.

Mark

Nice.

Heidi

And you know, to like re-engage our sensory system. We were doing all of this before we knew we were doing because I had a mum that said, Do you need a shit when you said you had a headache? Because she was doing all of that without knowing any of that about our family. I'm the first generation of my family that knows that we're neurodivergent. My grandfather was on the engineering team for Concorde. My uncle owns a Geiger  meter. Do you know what I mean? Like, we are the most neurodivergent family in the world, and none of us knew it before.

Mark

You're the first one to come out of the closet

Heidi

Well it's the canary in the mine

Mark

Another telltale sign of if your children are experiencing these barriers to attendance is if they are wildly different When they're not in school. So this is sort of outside of school time. So this is summer holidays or half term. If all of a sudden you go, he's just a different human all of a sudden. He seems Able to just more joyful, lighter, not he's...

Heidi

Nicer to be around.

Mark

Yeah, and wants to be around us. And that can often be overlooked, I think. Of actually, look at the difference when they're not being overwhelmed by school or are reluctant to go into school. Was that a Theo thing as well?

Heidi

Yeah. holidays, I mean, the transition into and out of holidays is always tricky for us.

Mark

Yeah, transition. Transition's a sign, which are always bumpy

Heidi

the six week holiday? we'd have a fortnight in the middle and it was freaking blissful. Like... It was like, oh, you know, like, like, with the equidistance from

Mark

Being in school, I've got it out of my system, and I haven't yet started worrying about it coming back into my system.

Heidi

All this is lush. Do you know what I mean? Like He's not thinking about what it was like. He's not thinking about what it's going to be like. We're just together in the moment. And like we weren't necessarily doing big things, but there was a noticeable difference

Mark

for sure.

Heidi

And even now, like he's able to advocate for himself and he's able to say things like, and he does a lot of napping. I'm so proud of him. But he can say things like, I've just done too much. I I'm going to just not do anything. And then when he comes home, he'll he'll say I mean, like, it's annoying as hell. And I've like I created a monster. But he'll be like, Don't ask me to do anything for an hour. It's horrible. But, you know, he's found his way through that. And that's because we were able to make that connection between what that two-week period looked like.

Mark

Yeah.

Heidi

It's about the reduction in demand for him. Right. If there's a reduction in demand, he flies. You know? So it's managing those demands, external and internal.

Mark

And, you know, again, back to how many of those demands you get in the educational environment, right?

Heidi

Yeah.

Mark

Yeah. But crucially, that it's important evidence, I think, if they're different in the summer holidays or in half term Or Christmas holidays, though Christmas is its own nightmare. So actually, maybe don't take Christmas as your litmus test Actually,

Heidi

even Easter is true. Like, where we're at now, this time of the year, this is a pinch point for barriers to attendance. We see a huge spike in barriers to attendance at this time of the year. I think that's because. Christmas was an absolute nightmare for lots of reasons. For lots of neurodivergent homes, Christmas is a wah wah. I don't know if you've done a Christmas episode, put that one up.

Mark

I did a Christmas episode. Yeah, that's the one I recorded with Belle.

Heidi

Oh, nice.

Mark

Episode six, I think.

Heidi

Then you've got New Year, clocks changing, frigging hell. Then you've got Easter. I mean, no one knows what day it is over Easter anyway. Everything's changed. There isn't a lot to do that is not like come and stick things, or you know, like, particularly for younger children, the activities that happen over Easter can be quite overwhelming and quite busy. Places are busy over Easter. And then you come out of that. And depending on how aware your kid is of what's coming, as we hurtle towards the end of the summer term There's another half term with an elder bank holiday and all of that that that means. But as we hurtle towards the end of the summer term, they're heading into that transition and they're thinking ahead to September. New teachers, new subjects, sometimes new environments, new schools. And they might not even be aware of it.

Mark

Like it's pattern recognition, isn't it? Oh, I've been here before. And they've got to navigate: am I going to see my friends in that six weeks?

Heidi

Period, how do I make that happen? Am I going to be left out? Do I actually want to see them? All of that stuff. So, this term is a massive, overwhelm term for lots of people. and the weather and you'll be and it's hot and you're not allowed to take your blazer off. What the fuck is that about? Sorry, it makes me so cross. Like, why can't we just let kids decide that they're too hot and they should take a blazer off? What the hell is the matter with us? The high school that Theo went to weren't allowed to take your blazer off unless it was announced across the school today, you'll be able to take your blazer off.

Mark

Did everyone shout huzzah! afterwards?

Heidi

Honest to God

Mark

and throw their caps in the air.

Heidi

If we're not even letting our children regulate their temperature

Mark

Yeah.

Heidi

How do we expect them to regulate their nervous system and their emotional responses?

Mark

Yeah. But just because I don't know if I made this point, if your children are different in those sort of holidays, those extended periods away from school. School. It's a sure, it's a good sign, and it's good evidence that shows that it's the school environment itself that's the trigger. So that's one to pay attention to if that's going on.

Heidi

Equally, if there are environments when they do really well. So for Theo, Scouts worked so well for him. He couldn't do anything else, but he could still go to Scouts. And the reason he could still go to Scouts because There was loads of routine, he knew exactly what was going to happen every time. He was given responsibilities, he was in charge of making cups of tea. He knew exactly what was going to happen. Practically everyone in his scout treat was neurodivergent.

Mark

Yeah, they're very neurodivergent friendly, the scouting movement.

Heidi

And there are lots of accommodations behind the scenes. I mean, let's be honest, adults who want to spend time with other people's children under canvas. They're not regular adults. And I don't mean that in a dodgy way. I just mean that if you're that kind of person, you've probably got a spiky profile, right?

Mark

This is an unofficial diagnosis from Heidi for the whole of scouting UK.

Heidi

Do you like camping? Yeah. Do you have a woggle? And do you make your own woggles? Definitely one of ours.

Mark

Yeah. If you're whittling a woggle, you're definitely neurodivergent

Heidi

If you know your reef knot from your I don't know if Theo will tell me off 'cause he knows all of his knots. Do you know what I mean? So, scouts worked for him, whereas, surprisingly, police cadets did not.

Mark

I would have thought that that would have been even more

Heidi

loads of demands, loads of rigidity. loads of hierarchy.

Mark

Ah, yeah, okay. I see the issue now. Yeah.

Heidi

Not enough dogs.

Mark

One thing to sort of reflect on, I think, in terms of barriers to attendance Is that very often it might not be like a big moment, this big seismic, no, I'm not going to do that. It is this sort of slow drip feeding of Reluctance and emotion, and the eventual kind of collapse of it all. It's just a gradual build-up Isn't it? I think.

Heidi

Yeah, often. Not always, but often.

Mark

Yeah.

Heidi

And it and it's cumulative and sometimes over years.

Mark

Well, that's it, isn't it? Like it's like they might start finding reasons to avoid A particular lesson, or have an objection to a particular teacher, or maybe it's like I don't want to do school trips, or I don't want to do whole school events, you know, sports days or like assemblies. Or assembly.

Heidi

Yeah, assemblies are a nightmare as well. And then when you find out that for the past eighteen months they've been eating their lunch in the library.

Mark

Yes, yes, that was one with um that was with with Otto and Jay actually, uh until Otto found football Then

Heidi

our kids do loads of self-accommodating without even knowing that's what they're doing.

Mark

Well, Otto, quite disastrously, just doesn't eat lunch because he plays football instead. It's like you know, I could play football, so I like that. I also like lunch, but I kind of prefer football and I don't want to go into a separate room. Because they said, oh, like, here's a quiet room that you can go into eat lunch. And then he was like, The people there were too noisy, ironically. So he just didn't eat lunch for quite quite a while. But it's all of these things that You start to build up and it can go unnoticed, right? As you say, you know,

Heidi

and it can become like your normal. Like, it can become you don't realize how much scaffolding you're doing and all of those accommodations you're making to get your child into school. And how much extra work you're doing that other parents aren't needing to do. And then people say, well, nobody likes going to school. That's not true.

Mark

Yeah, or just tolerate it. Yeah. You know, that's it. You don't have to love it. But if you can just go, well, this is a thing I need to do, and I'll just get through it and make the best of it. Right, which I think is probably the vast majority of people going to school. There's the, you know, the big, the silent majority just trucking along But crucially, are not experiencing that overwhelm.

Heidi

And you know what I think is so interesting is this disconnect that we have between and we do it as well in the neurodivergence community. We kind of go, neurodivergent kids, all the other kids. And we go, these kids, the neurodivergent kids, are not okay. These kids over here, they're okay. Truth is, all of them are probably struggling to a degree.

Mark

Exactly.

Heidi

It's just that our kids. find it harder to pretend that that's not the case. You know, for whatever reason, then wiring means that genuinely our kids are the canary in the mine. Our kids are evidence that the education system across the board is a bit of a mess. Yes.

Mark

But things that would cause a neurotypical kid to be pissed off cause meltdown. It would be disastrous. Yeah, yeah. So it's it's you know, it's degrees of severity in terms of the reaction. And I'm not wanting to diminish anything that neurotypical kids are going through because I know that social interactions at that age are just universally difficult to navigate, for example, but it is certainly more keenly felt by our neurodivergent kids. Yeah. Now I thought it was worth looking at when barriers to attendance are in place for such a long time and our kids are just trying really hard to get through it and just struggling through it and either masking or Or not masking and just raging through it and being in detention and just experiencing just coming up against the school authorities all of this time of what happens in the longer term. Because that's when barriers to attendance, emotional based school avoidance, whatever you want to call it, becomes established. And prolonged and then your child might very well experience autistic burnout.

Heidi

Yeah.

Mark

Which I won't go into too much detail here because I think it's big enough and serious enough to warrant its own separate episode, but it's definitely something, yeah, yeah, exactly. But it's definitely one that we experienced with Jay, and um, I know you did with Theo as well, right?

Heidi

So he had what I would call autistic burnout. People might call it a nervous breakdown. People might whatever people might call it. We call it autistic burnout in our house. When he recovered, I had an autistic burnout as well. And I'm still in burnout recovery now.

Mark

Tag teaming the burnout. I think it was Liz Evans that mentioned that that's what she went through as well.

Heidi

It's quite common. Because we've got parents who are holding it all together and doing their own kind of masking. Or just pushing on through, not because they're martyrs, but because there genuinely is no choice. You're not thinking about we're talking about how gradually over time it becomes your normal. One of the things that often happens in that situation is that the child's social circle and circle of trust shrinks. And you can find yourself in a position where you're the only adult that they trust, can be around, can regulate with them, can advocate for them. We see this such a lot in our community. And we've got one parent who is The only person that can advocate or communicate with that child or young person. Very isolating for the family, very isolating for the parent, terrifying for the young person, but really difficult. to communicate that out with that small circle of trust. And then you have to gradually grow that circle of trust again. And in and amongst that, the pressure on that parent is immense. And you are on it 24-7. You are perhaps advocating and fighting for an EHCP, or trying to get a diagnosis, or trying to keep your child safe. You're perhaps dealing with. significant mental health challenges, you're maybe seeing presentations around OCD, you may be they're maybe not sleeping or they're on like a flipped circadian rhythm. So they're sleeping in the day and they're awake at night and you're exhausted. You Potentially lose your job, have to give up your career, and all of the impact that that has for you as a human being, holding it all together as much, and I see this so commonly. Yeah, yeah, yeah, absolutely. And then those parents hit a crisis themselves as well. Yes. Often a physical crisis actually. We see parents and carers who for myself, I use a wheelchair now. I have a chronic fatigue condition that has been triggered by five years of the trauma that we experienced. And we got off lightly. Do you know what I mean? So very, very common.

Mark

It was Liz Evans that I talked to about it on the parental burnout episode of Neuroshambles.

Heidi

Yeah, I love it. Love Liz. You've got all the best people on.

Mark

I have. So. I'm not going to go into too much detail, as I said, but just wanted to look at how that appears in our neurodivergent kids. certainly with Jay, it they might not be able to leave the house at all. That's not just for school, that's just social avoidance, just social withdrawal.

Heidi

We sometimes hear phrases like regression in those environments. We hear professionals saying they've lost the ability to engage in self-care, you know, or dress themselves or those kind of things. In my experience, it's not a regression. It's not a loss of skills, but it's a loss of executive functioning and regulation ability. So things that your child may have been capable of. Before the burnout, when burnout happens, the mask comes off, there's something And I'm not very sophisticated in explaining this, but there's something where if you learned something when you were masked, when the wheels come off and you unmask The wiring isn't there anymore for the thing that you learned. Even things like for me, right? My burnout, one of the biggest and most heartbreaking for me personally, is such a privileged thing to say, but One of the hardest things for me, my burnout, means I can't read for pleasure anymore. And I've got an English literature degree, and I don't know if I mentioned I wrote a book. So I love reading. I do not have the ability to maintain my attention to sit and read any longer. I used to be a voracious reader. I would read easily a couple of books a week, every single week, without fail. I think it's because I learned to love reading and engaged in reading before the mask came off. When the mask came off, I wasn't able to tap into that part of my brain.

Mark

Well, it's part of your mask, I guess.

Heidi

Yeah.

Mark

I'm reading a book, leave me alone. You know, you're disappearing into another world.

Heidi

And so it's not a regression. Physically, I can read. Right? It's not that I've lost the skill to read, but I've lost the joy in reading. Okay. And I've lost the ability to maintain my attention to read. Thank God for audiobooks.

Mark

Yeah, yeah, yeah.

Heidi

And that's something we often see in burnout: kids lose the joy for something that was their root.

Mark

Yeah, that was a huge thing for Jay. Actually, that's really interesting because Jay lost his love of reading around about then. And now he claims to have written he's read all the good books. It's like, dude, there's so much amazing literature. Yeah, so it's that loss of enthusiasm for the things you used to enjoy.

Heidi

Things that regulate you. And the you know, and now the things that regulate me, I bounce from intense interest to intense interest. I went through a period about twelve months ago of crocheting like my life depended on it. I thought I was going to start a new career as a crochet influencer. And then that fell away and something else came in. Do you know what I mean? So that kind of regulatory activity that was reading has been replaced by shorter bursts of Things that engage the same parts of my brain, but I can't get back into the reading. It's really awful. I hate it.

Mark

Yeah. So obviously, there's that social withdrawal and that with that comes the loss of friendships, which again, that shrinking of the circle. you know, in a way. An increasing anxiety around the wider world can be a huge part of that as well, which just not wanting to leave the house Was a big thing for Jay. He just didn't want to do anything.

Heidi

And there's an increase in phobias. If you've got a child who has particular phobias, often they will really rise. So Theo had a phobia of rats. When he was in burnout, it became I'll use this word because I don't know what else to use, but no, disabling.

Mark

Right, okay.

Heidi

So, whereas previously, like seeing a rat on a T V would distress him When he was in burnout, he had a video game and it had a rat in it, and it triggered a massive meltdown. And we got to the stage where we couldn't even say the word. We had to say big mice

Mark

Okay.

Heidi

We couldn't say the word rat because it was such a trigger for him because his phobias lifted because of his anxiety being so high.

Mark

Yeah. That's I mean, we also saw quite a spike in aggression with Jay. It was like a huge spike in aggression and it was pretty pretty rough for everyone during that time. And ultimately, you know, this burnout leads to depression, you know, diagnosed or undiagnosed in our kids. That is very much how they experience it.

Heidi

And if you've got a teenager going through that, that impacts their wiring as they head into adulthood, that formulative, that puberty years , where our brains are doing a lot of This connects to this, and this connects to this, and this pathway is easier. If you've got a child who's experiencing burnout during that, those hard, worn, common paths mean that you're much more likely to experience depression, significant clinical depression as an adult if you experience it when you're a teenager. And more of our neurodivergent kids experience depression when they're in burnout.

Mark

Yep. Yeah. So you know, what we're saying really is that these barriers attendance are not just sort of a temporary thing. They can lead to a much, much bigger issue that Reverberates for many, many years to come, if not their entire life, if it's not sort of tackled.

Heidi

Families are forever changed when they experience barriers to attendance because they're Terms of reference are different to families who have been through the education system without that disruption. Their experience is different Their wiring is different. Their relationships with each other and with people outside their households are different. There's a lot of shame attached to it. And there's a lot of fear around you know, we I don't think any of us start when we have when we have a child and think maybe one day this kid won't be able to go to school We're all on the countdown to five when they can get out of our house and we can get a bit of a life back, right? So if that's not your experience, you are othered. Significantly in society. You know, like I have been in places with parents and carers with their kids, and it's been during the school day, and very often the first question people will say is, Why aren't you in school?

Mark

Yeah.

Heidi

You know, or they'll meet a kid, and the small talk that we do with children is: What school do you go to? What do you like at school? our kids and our families can't engage in those conversations because of what school means for us. It changes you forever because your life experience is so different to the majority.

Mark

Yes, absolutely.

SECTION INTRO

Neurodiversity Champions.

Mark

Okay, neurodiversity champions now. These are the people and organizations that are doing wondrous things. In the realm of neurodiversity, it's always worth giving a shout-out to these people. So, do you have some neurodiversity champions for us, Heidi?

Heidi

I've got tons, but tonight I'm going to shout out Black SEN Mamas. The work they do is absolutely incredible. They work supporting black SEN mamas, and they're doing a lot of work around advocating for that community and helping to educate the rest of us that no one gets left behind. That's really vital. They're not a funded organization, go and find them on Instagram. If you yourself are from a marginalized community and you want to reach out to them, they're incredible. But please go and support them, share their stuff. Marsha at Black SEN Mamas is incredible. And the second one is Rachel Filmer. who is the founder of Send Rights Alliance. She's also the co founder of the Save Our Children's Rights campaign. Her Instagram is SendRa. I did a webinar with her last night and I said to her, You're like, SendRa is like She-Ra, but more of a badass. She has an inverted commas proper job and she does the work. advocating and campaigning out with that. And she is doing a lot of work right now. If you go and find her on Instagram, all of her content is around the Send Reform Proposals and helping parents unpick that. I recorded a webinar with her last night. It's available for free. Come and find me on my socials. You can get access to that.

Mark

Well, I'll put a link to that in the show notes.

Heidi

Yeah, 100%.

Mark

Because there are so many people doing wonderful things around barriers to attendance and education otherwise than at school and all of that, because it's such a massive issue for our kids. There are lots of people that deserve a shout out on this particular episode. The ones I want to give a particular shout out to is Not Fine in School, who you mentioned briefly earlier. who are a parent led organization, and it's a fabulous resource for the massive numbers of families with children experiencing school attendance barriers. They've got a Facebook group with a membership of over 78,000 parents, carers and family members. So that's how widespread it is, right? These are just the people that go on Facebook. So as well as the Facebook group, they also do research and they campaign on attendance law reform and they produce resources as well.

Heidi

They work really closely with Square Peg, who are a lobbying organisation.

Mark

Great.

Heidi

Who do a lot of work behind the scenes in Whitehall? It's incredible.

Mark

So great stuff there for Not Fine in School. Definitely worth a follow. And also, in a similar vein, Define Fine as well. are another community of parents who support other parents, and they engage with parent carer forums and local communities and do some amazing lobbying work as well. So definitely have a look at them and see what they're up to because they're they're doing some great things.

SECTION INTRO

Tiny Epic Wins

Mark

Tiny epic wins now. These are the things that to a neurotypical family is not a massive deal, you know, like their kids. going to school. But to a neurodivergent family, they are epic wins. So Heidi, do you have a tiny epic win for us?

Heidi

My tiny epic win is really random.

Mark

Oh, love it. Love it.

Heidi

Massive, right? So Theo, as I've mentioned, is at uni doing animal management. And one of the modules that he's doing is a training module. And he had to pick an animal to train. And because it's my child, he picked the giant tortoises. So he has been Working an hour a day for the past, I think, week with these two Sulcata tortoises. So they're those giant tortoises. And my tiny epic win is that today I got a message that said he made a Target well, someone else made a Target thing. It was a broomstick with a lid of a celebrations tub on the lid. As a means of training the tortoises. Tortoises are not interested in being trained, right?

Mark

Right.

Heidi

And they, like, you normally would treat them with things. They like to look at the treats and they're like, Yeah, and and the reason he's training them is to get them to walk onto the scales so that they don't have to lift them because the lifting of the tortoises can hurt people's backs, but also it's unnecessary handling. So at 13. 34 today, I got a message from him, and it said, One of the tortoises just touched the stick. Three exclamation marks. A tortoise emoji, a heart emoji, a fire emoji. Oh man, that is a... he's got six more sessions. I reckon by the end of it, he'll have that tortoise.

Mark

That is a tiny epic win. Yeah. I want to know how he chose the tortoise. Was it like, you know, when like when I was at school and they picked football teams, you know, that someone would choose the best player and you go down the line until there was like one left over. Was there just one? No one wanted the tortoise. It's like, I can work wonders with this tortoise.

Heidi

You could choose anything, but my child, being my child, decides that he wants to not do the obvious.

Mark

Yeah, obviously.

Heidi

And he wants to not do what everyone else is doing, which is meerkats. And

Mark

what else are people doing?

Heidi

I think it's maybe small mammals that people are doing. Marmosettes, maybe. So he decides that he's going to task himself with training tortoises. He also has a tortoise at home, so he's pretty down with the whole reptile things. But yeah, so that's his tiny epic win that he got a tortoise to touch a celebrations lid on the end of a mop handle with its nose today. Big celebrations alright.

Mark

Amazing

SECTION INTRO

What the flip?

Mark

Okay, what the flip moments now. These are the things that our neurodivergent kids will say or do that completely bewilder and baffle us. Have you already what the flip moments, Heidi? I mean, to be honest, your Theo training is Theo training a tortoise is a pretty what the flip moment.

Heidi

Right, it's a double barrel.

Mark

I've got a few. I thought I'd tie them to school and barriers to attendance. So one of my what the flip moments was to do with Jay's EHCP annual review. a few years ago when he was in the middle of burnout. And when you do an EHCP review, they you have to do the child's profile bit, like what what the child thinks about stuff And it asks what their favourite things are. And Jay said, and I wrote it down at the time because it was wonderful. I said, Jay, what are your favourite things? And he went. gaming, books, T V, and the knowledge that humans are mortal, so I don't have to endure this forever. Now that's quite the indication that he was in burnout there. It was like fucking hell. That was pretty bleak. Keep it light, Jay. This is the first page of your EHCP, dude.

Heidi

I love that. One of Theo's things is when people say, oh, I'm dying. Theo goes, we're all dying.

Mark

You're not special. Yeah, so that was that was a what the flip moment for a while ago. Also, similar around that time, we're looking for secondary school provisions. for him. And then we trying obviously you've got to humor them by going to mainstream and going, Well, that's not suitable. So I went but I went to this mainstream school that had an autistic unit and was really good and I had high hopes for it because I they were wonderful there. So I took him on the train. And I was trying to get him enthusiastic about it. And we came to the school. It looked really nice, really you know, it looked great. from the outside and I went, Okay, so what are your first impressions, Jay? And he just looked at it witheringly and went, They could do with a trim on these hedges It's like, oh God, you are not on board with this, are you? It's like we've not even walked in yet. He's criticising the foliage. Fuck. And then immediately after that, I was like, okay, well, that's not really what I was thinking. Was there anything else that you, you know, feel about the place? And he went. Seriously, who builds a school next to a rental property? I knew, I knew we were doomed at that point. There was no way he was coming to this school. He's finding anything, anything to not go to this school. So yes, suffice to say that did not go on the list of preferred preferred settings.

Heidi

Oh, I love that he just like tells it like it is.

Mark

I love it. I mean, those hedges did need a trim, to be fair. Well, of course. As I mentioned earlier, this is a two part episode. Obviously, this one is focused on what EBSA or barriers to attendance actually is, what can cause it and how it might show up in our neurodivergent kids. The next episode is going to focus more on the impact it has on our families, both emotionally and logistically, and financially as well, of course. But also what we can do to advocate for our kids who are experiencing it. So look out for that one when it's released in a couple of weeks' time. For now though, firstly, Heidi, thank you so much for talking to me about the the knotty world of barriers to attendance, school avoidance, all of that, you know, it's a it's an enigma. So thank you for helping to shed a little bit of light onto some of it.

Heidi

Thanks for making time, every conversations are so important, and I think parents and carers really need to hear that. they're not on their own around this stuff. And the work you do with Neuroshambles Shambles is doing that. So I think it's really important.

Mark

Thank you. I'll get you back for EOTAS and some other stuff at some point if you're happy to do that. You'll be back.

Heidi

Yeah.

Mark

Also, massive thank you to Neuroshamblers for listening and commenting on the socials and just telling other people is hugely important as well. Word of mouth seems to go a long way to getting other people listening to it. So thank you for doing that. If you want to follow us on the socials, we are on I say we, it's me, it's no one else. Just me on my own. Neither why are we? I am on Facebook, Instagram, and TikTok. You can also email me at hello at neuroshambles. com. If you want to suggest any tiny epic wins, what the flip moments, neurodiversity champions, any guests you think I should get on, just come and have a chat, you know, and I'll get back to you if I can. That would be lovely. I think that's it for now. All that remains for me to say is have a nice life!