Unseen Struggles: The Surprising Link Between Pain And Neurodivergence (With Jane Green)

What if neurodivergent students' behaviours were actually signals of physical pain?

In this thought-provoking episode, Jane Green, MBE, a passionate advocate for neurodivergent individuals, explains the surprising connection between physical pain and neurodivergence in young people.

Jane explains how physical symptoms, like fatigue and chronic pain, can impact classroom behaviour, performance and attendance, and urges educators to consider these unseen factors when supporting neurodivergent students.

Important links:

Visit the SEDSConnective website here!

To read Jane's article on Co-Occurring Physical Health Challenges In Neurodivergent Children access this link.

Get our FREE SEND Behaviour Handbook: https://beaconschoolsupport.co.uk/send-handbook

Download other FREE behaviour resources for use in school: https://beaconschoolsupport.co.uk/resources.php

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Transcript

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Simon Currigan: 1:11

Hi there. And on this week's episode of School Behaviour Secrets, I have some new information that you need to support the kids in your school. I'm gonna be talking to Jane Green, MBE, about the link between pain and neurodiversity and how that link may fuel issues like emotional dysregulation or attendance issues or a pupil's ability to succeed and thrive academically in school or make social connections with their friends. It's really interesting work, and it's something that you need to know if you are working with neurodivergent pupils in your school, which means all of you. So stay tuned for this week's episode of School Behaviour Secrets. Welcome to the School Behaviour Secrets podcast. I'm your host, Simon Currigan. My co host is Emma Shackleton, and we're obsessed with helping teachers, school leaders, parents, and, of course, students when classroom behaviour gets in the way of success. We're gonna share the tried and tested secrets to classroom management, behavioural special needs, whole school strategy, and more, all with the aim of helping your students reach their true potential. Plus, we'll be letting you eavesdrop on our conversations with thought leaders so you'll get to hear the latest evidence based strategies before anyone else. This is the School Behaviour Secrets podcast. Hi. Simon Currigan here from School Behaviour Secrets and Beacon School Support, and welcome to this week's episode of the podcast. We're gonna share with you today some really new important knowledge. We've got a guest, Jane Green, MBE, on the show, and she's gonna talk to us about how neurodivergent pupils may experience pain or indeed have more physical pain in their lives and how adults' reactions to that, potentially their disbelief can affect their outcomes. It can affect how they do socially and emotionally in school. It might affect their attendance. And there are serious implications here for how we respond to what our pupils are telling us in school as adults. So some really important information that you need to know if you're working with kids in school, so please stay with us. If you're finding the School Behaviour Secrets podcast useful, if you're finding this valuable information here, then please don't keep it to yourself. Please, first of all, like and subscribe because that prompts the algorithm to share, the podcast with more teachers, school leaders, and parents. Indeed. We've got an audience of parents who need this information. It takes just 10 seconds. It's the quickest and easiest way of supporting the work that we're doing. And, indeed, if you can forward it to to 1 or 2 colleagues who might find it useful, that helps us grow and reach more people. So I'd really appreciate it if you could do that. Also, we've got a resource that really supports and accompanies this episode really well. It's called the SEMH behaviour handbook. And what it helps you do is it helps you link behaviours that you might be seeing in the classroom with possible underlying causes, things like autism or ADHD or trauma. Now the point of this isn't for classroom teachers to try and make a diagnosis. That's for medical practitioners to do. We're not qualified to do that. But often, we're the professionals that start to join the dots between what we're seeing in school and possible underlying needs. So we can get the right professionals involved earlier on, and we can get early intervention strategies in place, which we know always results in positive outcomes for pupils. You can get it from our website. I'll put a direct link to the handbook. If you're watching this on YouTube, I'll put a direct link in the comments. It's a free download. Or if you're listening to the audio version of the podcast, simply tap, open up the episode description, and there'll be a direct link there so you can click straight through. That's it. Now it's time for my conversation with Jane Green, MBE, about neurodivergent pupils and pain. I'm very excited to welcome Jane Green to the show today. Jane was awarded an MBE for services to neurodivergent people and is an educationalist and ex assistant head teacher. She also worked as a local authority advisor lead and national lead for autism, ADHD, and dyspraxia. She has worked in all phases of education and leads the neurodivergent hypermobility charity SEDS Connective and regularly writes and presents to UK and global conferences. She is the co author on the first paper on neurodivergent children and young people with health challenges. Jane, welcome to the show.

Jane Green: 5:56

Thank you so much for having me on.

Simon Currigan: 5:58

It's a pleasure. And this is a topic actually that I'm completely new to as well. So I I'm looking forward to learning about your research and what you're discovering about how we can support neurodivergent kids in school. So I wanna start by asking you, what are the unique challenges that neurodivergent pupils with physical health conditions face in mainstream schools? And why is it for us as educators to understand those needs?

Jane Green: 6:28

They are unique in the way that we haven't considered them before. But in a way, they're not unique because they co occur with neurodivergent children and young people and adults, actually. But I think what is unique is it's just coming to the forefront in education health and care throughout everything and the unique thing is and it sounds utterly bizarre to people who've been working in this area for a long time that neurodivergent children, young people i.e. So I'm gonna identify autistic, ADHD, dyspraxic, probably dyslexic, those with Tourettes have co occurring physical health differences. In our body, we have connective tissue. It's top to bottom, you know, entry to exit, I could say. And what they found, the scientists, is that our collagen, the protein in the connective tissue is weak, is really lax, is really stretchy and elastic much more than the neurotypical or neuromajority population. That's what it's found and so this connective tissue surrounds our organs, our tendons, ligaments and joints, even our vascular systems of the veins, the bowel, bladder, stomach, heart, even our lungs, the ears, even eyes, and probably brain. I was one of those children missing in education. I was one of those children who didn't do well, was considered dim and, a hypochondriac and I've been like that all my life, until I late studied and even now I still got a bit of the imposter, obviously I've got degrees and things but the hypochondria, the invalidation of not believing that I'm actually ill or injured is still with me at times and I think that's that's a trauma in a way from from my schoolhood.

Simon Currigan: 8:32

Can I just ask a question about that? Because you've got personal experience of that. This is obviously important to you. What was the impact on you of that, I guess, in disbelief from adults when you were younger? You've you've sort of touched on it made you feel like a hypochondriac, but what was that like for you?

Jane Green: 8:52

I didn't know any different. I also didn't know that pain wasn't normal because I've always been in pain and I think that's quite key. But what it did do was - I wasn't a great communicator. In fact, I was selective mute probably most of my particularly secondary age. I was also bottom setted

Simon Currigan: 9:12

and there was no structure in the classroom so it was a

Jane Green: 9:12

matter of survival and not being squashed by your peers, but I wouldn't if I did know an answer or something I wouldn't dare come out with it because I knew my peers would squash me. But also I was often missing in school. A - it was easy to be a truant person what we call non attendance avoidance now because in those days you just used to sign in on register and then at the end of the day so you could leave in between. But I had a lot of infections not just flu but scarlet fever and things like that. A lot of viral infections as well. And a lot of pain. I would eat lunch occasionally even though it was pretty grim I'm going to say. But I would have looked like I was 9 months pregnant because of the bloating in my stomach. And I didn't know what it was. I just felt very uncomfortable with it. So you sort of avoid food because you don't know what's happening. You just know how how painful you are. And I used to get comments from others or I was just told I was making it up basically. I used to have all sorts of migraines, joint aches, but I thought that was normal. What we call half dislocations, although I've had full ones as well of the joints. And obviously, they're quite painful, but the doctor just used to roll his eyes up at me. So I think to your question, what it does, it invalidates my own belief or it did in my in my health that it wasn't true that I was making it up, that I was being oversensitive. Obviously, neurodivergence wasn't known back then at all. And so I I just thought I was a bit of a failure really because I couldn't do what the others were doing in PE, in all sorts of things. Yet some things I really excelled at and I didn't know why either. Like being I'm particularly bendy. Not everyone is who's got hypermobility. I just want to put that out there. And you get extreme fatigue as well. And so all these symptoms are very familiar to us now with what is happening in school.

Simon Currigan: 11:24

Could you explain a little bit more? You started talking about collagen and how it can be different in neurodivergent pupils or people in general. Can can you explain more about why that's important, the link between that and how those pupils might experience pain?

Jane Green: 11:39

So we know with neurodivergent people, a lot of the approaches and interventions is about burnout and fatigue and anxiety, for example. And so you've got the social, emotional, mental supports in. But what we know about the connective tissue being weak is that for a lot of people in primary a lot of allergies, those children with eczema, hay fever, rhinitis, we have extreme reactions with histamine. It's all to do with the connective tissues, temperature regulation, but also with younger children particularly it's constipation, impaction and diarrhea. And so a lot of late toileting might be actually due to hypermobility and, it causes a lot of anxiety. We get back loads of correspondence from parents and carers even professionals who don't know what to do but they're accused of late toileting or other things. But the children cannot - there are various things going into it. They cannot control it because of the hypermobility. So the nerves in the bowel and blood and stomach either are too loose or they're too strong. So we're quite extreme and that's why we get the diarrhea constipation and this causes anxiety for the child because they don't know what's happening either. Then you've got the interoception sense, cognitive emotion going on. One of the inner senses that you don't know what your bladder and bowel or stomach is doing. So neurodivergent people often don't know if they're in pain until it's suddenly overwhelming and I think a lot of teachers or teaching assistants and staff suddenly see that coming out of the blue which perplexes them and that is why. And then also understanding it in our brains that that is pain or that is hunger It's quite difficult for us to know. We actually have to be almost taught it. The other thing with anxiety is really, really interesting and this is a key part. So particularly for girls in secondary, coming up to puberty is really key and why we get so many issues then. And obviously the attendance actually. So it's a gravity thing because the if you like, the veins are quite elastic and loose and not very strong, when you get up from lying to sitting, the blood starts pooling down from the head going it goes downwards. And then as you you stand up, it goes down to the feet, but it means the oxygenated blood does not get to the brain. So for neurodivergent people and working with them they say oh I've got brain fog, oh I'm confused, oh it's my executive functioning. Actually this is connective tissue, this is hypermobility, it's often it's got a technical name, but what the heart does because the heart is really clever it starts pounding really, it starts working really hard to get the blood back up there and so for the person it feels like your heart's pounding, you start getting hot and sweaty, you don't know why you've been perfectly fine before but it makes you feel anxious and to anyone looking outside it's anxiety, but actually it's a physical cause, so any social and emotional or mental support for that won't have the best outcomes And that works in lessons as well. You might have to raise your legs and things like that. So that's just one example of anxiety. Why it matters so much. And most people think of neurodivergence, they've got brain fatigue, they've got burnout. Actually, we know that with connective tissue being loose, the muscles are the ones doing all the work holding us together. And you have to sit up in school, and it takes much more energy for a neurodivergent child to do that than the neuro majority or neurotypical whatever you like to say much more energy. So using more energy just sitting up let alone working and everything makes you more tired because you're inflamed. We're inflamed from infections, we get more infections, we get we're dealing usually with a lot of pain and injury but you can't see it. It's invisible. And migraines are particularly key, jaw pain issues, eye issues. There's obviously a lot of astigmatism in neurodivergent people due to hypermobility. And stomach issues, so as I said entry to exit, so it can be swallowing, it can be burning reflux, burning pain, it can be stomach cramps all the time. So people avoid food and they think it's an eating disorder which it might be but it also you need to look at the physical as well.

Simon Currigan: 16:27

The implications of this are actually really complicated because on the one hand you've got the child in the classroom who might be misinterpreting or not understanding their own pain or why they're feeling like you described the feelings of anxiety, but it's not actually anxiety. And then you've got the adults who are also misinterpreting potentially what's going on. So there's there's a lot of room for error there about how the pain could be misinterpreted.

Jane Green: 16:54

Absolutely. And that's why the trauma what we find is children, young people are disbelieved and they grow up. We've got all ages in our charity with huge trauma and PTSD, fullness, not being believed, told by many doctors and others that it's all in their head. I mean, I've been told that many many times even with visible injuries. But also for staff, it's quite, scary. I've done a lot of work. I've done toolkits and publications and I I talk to a lot of teachers and I remember PE teachers, always key, talking to me and saying it was really scary. They've got this wonderful student who excels at one sport or they've got another one and they think they might be hypermobile. They were learning about it from me. They said, but suddenly this person's ankle seemed to be out of place and I didn't see anything happen before and I've got to go back and tell the parents what happened, but I don't know what happened. It's a two way thing. The parents don't often know either because they haven't been diagnosed. It you can't get a diagnosis for the formal, terminology. It's so complex. I don't even want to go into it too much. That's why I use hypermobility. In the paper, we've used JHS and EDS. There's also HSD but it changed again last year to pediatric types. So we use hypermobility as a simple word to cover the formal diagnosis but for children it's very unlikely they'll get a diagnosis unless very rare. If you've got a neuro divergent child particularly at puberty the hormones are very very key. So the male hormones tend to, protect more, not always, but they tend to protect because the muscular gets stronger. So that's key. But for girls and women, it gets worse. And there is a study about the endocrine and hormone issues. So the monthly pain can be much worse and I know it's in the news at the moment as well.

Simon Currigan: 19:00

So how does this disbelief in the child's pain from medical professionals, from teachers, from parents who don't understand what's going on, how does that impact on their access to the curriculum as you know, aside from getting a diagnosis or the label? Just thinking about school wise?

Jane Green: 19:19

I've always been very passionate about attendance because I could see the issues why so many neurodivergent people were missing in education and of course my own, story and my children. So if you do not have a formal diagnosis of something unlike, say, diabetes, I'm just picking that out of the air, there is no code, there's no reason they're absent from school, they're tired. Then it might be they've got a neurodivergent diagnosis, so it's misattributed just to the social and emotional mental neurodevelopmental side, but actually it's physical. The parents, carers often don't know it. So the SENCO or whatever might go to the doctor, say is there a reason this student's not at school, the doctor won't know it, they're not trained in hypermobility. This is the biggest issue and so there's no coding or they might say well they're autistic or ADHD so it's fatigue and burnout or EBSA, emotional based school avoidance, EBSA. So that's what I've been working on for many years and it's a key point I present on this. Emotional based school avoidance, if you look at the articles mention physical symptoms and they are fatigue, stomachache, headaches, and anxiety, and I think I've just explained that these are physical co occurrences with hypermobility. There's a real reason for this, but if you disbelieve it and say it's socially, emotional, mental the child feels like a failure when they've got all this support and interventions and approaches working but they're still feeling really anxious or fatigued. I think the mental interplay is really interesting with the physical because then you do get anxiety and depression because you're not being supported and that's where it's not just physical. I'm very much for the whole body brain and I know I've been there and the mental really impacts that they don't believe me. I'm making it up. I must be invalidating myself. I can't do what my friends are doing. Look, teenagers, they want to do. They want to go out. They want to do this. They can't. They're absolutely fatigued.

Simon Currigan: 21:36

There's a lot of complexity there. I can imagine once a child starts to feel anxious on top of it, then you have a really hard time unpicking what is what at different times. And I I wanna circle back to something you said actually about kids then getting potential, like, interventions around anxiety or, you know, some other SEMH support that might actually be a waste of time because it's focused on anxiety, but actually, at that point, it might be entirely related to the way the child's experiencing pain in school.

Jane Green: 22:13

Yes. I wouldn't like to say it's a complete waste of time because I believe in the mental health and support. But if you think of the amount of funds the government is pouring into mental health without the physical, you know, where brain and body joined up. I keep saying that it doesn't make sense when we've got the evidence. And also, you know, on behaviour, we wrote this in the paper. If you've got someone in pain and they're not believing they can't articulate it or express it or understand it, it's going to express in a different way in the classroom, isn't it? If you think neurodivergent children, think hypermobility and vice versa until you know different. But it's not to say everyone will be symptomatic. And I don't want to paint it as a doom and gloom thing, but we do need awareness training and support to practice to support these children and young people because otherwise they grow up with this trauma and disbelief as as well as poor poorer health. We know that. And what the evidence shows is that if you're with Ehlers Danlos, which is a formal terminology with hypermobility, given, so given hypermobility, you are over 7.5 times more likely to be autistic and 5.6 to be ADHD and about 20 to 30, but there hasn't been too much evidence for dyspraxia. And then another one shows that you are over double if you're neurodivergent, you are over double likely to have hypermobility and more pain. So that came here out in 22. We've got it on our thing. And then another one interestingly this year was about the emotional dysregulation. It's actually linked to hypermobility. So a lot of people with ADHD in school, they have a lot of emotional regulation interventions and approaches. But if you don't look at the hypermobility, dyspraxia, for example, DCD, and the interplay of that with the emotions, I won't go into it too far, we can see the dysregulation. So that's a really important paper as well.

Simon Currigan: 24:23

What are your recommendations? What can we do to help pupils, I guess, manage and understand their pain?

Jane Green: 24:34

I think what we need is obviously funding to make this, I mean, global. It's going to be huge. It's going to happen. But think neurodivergent, think hypermobility and vice versa until you're no different. If they have key indicators like the Beighton scale and we've got symptom checkers. So if you've got migraines, stomachache, fatigue, allergies, particularly eczema, you might want to look further into it vice versa. When I did a a webinar about a year ago, I was talking to local advisory teachers, my my ex peers. It's always scary doing that. About 350 of them and one said you know I've taught 100s and 100s and 100s of autistic children and advised them and their teachers and ADHD children. None of them had an Ehlers Danlos diagnosis and I said no they probably don't. She said but they all complained of symptoms you've just mentioned and she said I'm actually trembling thinking about it now that I didn't know this and I think you can't feel guilty about it. We.. I've been doing this for a while but it takes a while for this knowledge and understanding and acceptance that something physical with neuro divergence is real. We want to be believed. I am still asking to be believed even now at my age. So I think we are just one charity although we're growing quite big. We want to connect to other educators that's what you can do as educators yourself. We want to do training. We are talking to policy makers and I do a lot of think tank talks and so on. I'm usually squashed in in inside mental health so it's always quite interesting. But I as I said I'm not against mental health it's very much an interplay but we cannot do one without the other. It's like the social model and the medical model. We want the biopsychosocial medical model. My members and their children, their parents are crying out for a medical model to believe us. It's not just about the social model and the environment. The environment is really key if you're, in secondary, particularly children might need to put their legs up to help with the dysentery, the dizziness, and so on. Things like that. Having water, having electrolytes, some people need them regularly. Looking at the eating issues, are they always an eating disorder? Is it actually pain? I was vomiting all the time, you know. Is it for younger children? Is it toileting? Are they floppy? Are they misbehaving if you like? But is it something else could actually be pain and we we often need movement. You will find me if you ever meet me, I'm always fidgeting. I'm always moving.

If I'm talking in a big conference I'm moving around and that's because A: 27:32

I want to know where my limbs are and remind them they're connected to me because they're extraneous joint noises

going on but B: 27:43

I need the feedback. I need that feedback all the time. You need some movement or you need some dream time or downtime. We've got the autonomic I won't go into it, but the autonomic nervous system. Sometimes we need to calm it down, but sometimes we need to rise it up, but we're quite extreme like that and that's how you get the best outcomes for the child but what I really think they need is support and management to encourage them. So shoes are really key. Teenagers might need different shoes that support the ankle or use special insoles and orthotics. They don't look like their peers. They might not wear them. I write about this. That's okay because actually that's their choice as a teenager. I think we have to go with it. You can't make them. Sometimes they might need lift passes, but you've seen them running the next morning and they said, well, they don't need it. Yes. They do Because they'll get extremely fatigued and dizzy. Same with wheelchairs or or walking sticks. So if you've got a a health care plan, definitely, you know, don't take away things just because they seem to be better.

Simon Currigan: 28:53

You make a really important point there, actually, because I've seen this with the work that we do in schools that sometimes people see kids in a snapshot of time and they appear to be okay. So they start saying, well, they don't need x, y, and z anymore. But, actually, when you look at them later in the day or across the week, actually taking that away because you saw them in a sort of 3 minute snapshot where they didn't appear to need that. Or perhaps they didn't in that moment, you know, like, literally need it. That doesn't mean that it's a useful support through throughout the rest of the week.

Jane Green: 29:25

Yeah. I mean, as an advisory teacher, we'd go in, and I always said, I want to see them in this context, in this context, in this context. But, absolutely, if you think hypermobility is there, is it walk the walk? You know, do their day. Walk the walk if you've got time. But that's what I say is do that walk and see how they get through the day and why they're so fatigued at the end of the day. And the parents are probably saying they completely crashed out whatever they're doing. That's probably why. They might really enjoy it but they can't they can't cope if they're not believed. So I'm going back to that belief and it's not that they don't want to be there but sometimes we need to somehow get some more flexibility for why they can't be in school or particularly at teenage years and I've got some at primary who can't get to school on time. We need to work on that. It's really, really difficult for them because in the morning with dizziness, this this, oxygenated blood, it's really hard to get enough fluids and electrolytes in and it it most appears in the morning.

Simon Currigan: 30:31

We're a big, you know, supporter of sort of the EBSA model. But when you're thinking about often schools go the court root, you know, you you can see the difficulties there. When you know about this research and you have this information, you think things through. So policy makers there's a there's a new piece there.

Jane Green: 30:48

Some parents do mention they are accused of fabricated induced illness because they've got all these injuries, illness, and fatigue, and they don't know why, what's going on. The child doesn't know why, but they don't look well. Or they're they're told they're making it up. I've got pediatricians who've actually been with their children been accused of this which is completely bizarre and I also think examination is a key too because of the support of writing and the brain fog. So they need electrolytes, fluids or movement breaks. And so we're just writing something on JCQ what these students might need if it's agreed. So hopefully there will be more knowledge in with the government policies DFE but in the meantime we can all do something do look at our paper number 1 probably see if it makes sense I think it does but our paper is really interesting it's quite easy to read actually it's not a very very technical one in that sense and I think some of the quotes really hit home what we've picked out there and why children you might see them where the behaviour changes, but actually is linked to something else.

Simon Currigan: 32:00

Yeah. This is really important new knowledge. And and thank you for bringing it to our attention, Jane. I mean, I would say, like, I've been supporting schools for over 17 years now. And until you brought this to my attention, I've never heard of it. So there'll be people listening to this just like me for the first time thinking, yeah, I can picture my response in that situation. Oh my goodness. But to people who are thinking that actually, you you've gotta give yourself some leeway and think everyone's doing the best they can with the knowledge they have at the time. So now we've got this knowledge. It can help us support the kids moving forward too. Jane, we ask this of all our guests. Who's the key figure that's influenced you, or what's the key book that you've read that's had the biggest impact on your approach to working with kids?

Jane Green: 32:43

Book wise, I always loved The Chronicles of Narnia because of the creativity and the fantasy and the pure joy of that. But I also I'm gonna pick 2. Sorry. Philip Pullman because of the fantasy and creativity as well. He writes about, you know, the child doing it for themself. If you don't have that that belief in you, if you're squashed in creativity or whatever it is you're doing, you know, you can do it for yourself and motivate yourself. And I I find that really really inspiring.

I loved, I don't, I'm not a practicing teacher now because A: I got quite ill and B: 33:19

I'm running a charity, but that creativity is always a spark for every child I believe in whatever area whether it is in math, science, STEM or sport. It's the creative structure we're doing and I believe that's our passion and motivation and I love joy. I know what it's like to lose nearly everything And I think having joy is really key. So that's why I love those books.

Simon Currigan: 33:53

Jane, can you tell us how we can find out more about the work you've been doing, the research that's related to this? You talked about, your paper. Can you tell us how to get a hold of that, please?

Jane Green: 34:05

Yes. Of course. On our website, we have a research section, so relevant research should be on there. It's www.sedsconnective dot org. SENSEconnective stands for symptomatic hypermobility Ehlers Danlos neurodivergent syndrome in Sussex where we started, but we're now global and connective because it's I think you've got the ideas about connective tissue now. And, you know, there's a lovely saying, if you can't connect the issues, think connective tissues.

Simon Currigan: 34:39

Oh, yeah. That's really neat. And I'll put a direct link to the website in if you're listening to the audio version of the podcast, it'll be in the episode description. And if you're watching this on YouTube, I'll put the a direct link through in the comments as well so you can click straight through. Thank you. And that was my conversation with Jane Green, MBE, about the link between neurodivergence and pain. That's really important new work that's everybody in school who works in school needs to know about. If you want to know more, head straight to Jane's website, sedsconnective.org, and SEDS is spelled S E D S connective.org. I'll put a direct link as I promised during the interview in the show notes. I hope you found today's show useful. If you have, make sure you share it. Don't keep it to yourself. Let's get that knowledge out there to all of the school leaders and the school teachers and the parents who need this to support their kids. I hope you have a brilliant week, and I can't wait to see you next time on School Behaviour Secrets.