Airing Pain 148 | Links between hypermobility and neurodivergence

First broadcast 5th March 2025

Listen to AP #148

Edition features:

Dr. Clive Kelly, Consultant Physician and Rheumatologist, James Cook University Hospi-tal and University of Newcastle-upon-Tyne

Dr Jessica Eccles, Reader in Brain-Body Medicine at Brighton and Sussex Medical School

Ren Martin, neurodevelopmental specialist

Ceri Reid, neurodivergent mother and founder of Parents Voices in Wales

Imogen Warner, student with lived experience of autism and chronic pain

Jane Green MBE, founder of SEDSConnective

We are immensely grateful to The British Humane Association and The Heather Hoy Charitable Trust whose generous grants made this podcast possible.

Transcript begins

Paul Evans: This is Airing Pain, a program brought to you by Pain Concern, the UK
charity providing information and support for those of us living with pain, our family and
supporters, and the health professionals who care for us. I’m Paul Evans.

New Voice:
What’s the relationship between joint hypermobility and anxiety? Is there a relationship
between joint hypermobility and neurodevelopmental conditions like ADHD and autism?

New Voice:
If you’ve got Ehlers-Danlos, you’re over 7.5 times more likely to be autistic, and 5.6 with
ADHD.

New Voice:
The autism affected how I felt the pain, and also how I kind of reported the pain, and how I
just accepted a doctor telling me “no, there’s nothing wrong with you, go away.”

Evans: The term ‘neurodiversity’ simply means that there are natural variations – not
deficits, disorders, or impairments – in the way people’s brains process information and
behaviours, and how they see and process the world. So, those whose brains work in a
standard way – let’s not use the word ‘normal’ – are described as neurotypical.
Neurodivergent describes those whose neurological conditions mean that they are not
neurotypical. Conditions include, but are not limited to, autism spectrum condition,
attention deficit hyperactivity disorder or ADHD, development coordination disorder, DCD
also known as dyspraxia, but can also include Tourette’s syndrome and more. So, do
people with neurodivergence experience pain differently to those who are neurotypical?
Doctor Clive Kelly is a consultant physician and rheumatologist at James Cook University
Hospital in Middlesbrough, and he’s Senior Lecturer at the University of Newcastle-Upon
Tyne.

Clive Kelly: The concept that everybody experiences pain in the same way has to be
thrown out because many people with neurodivergence perceive pain in very different
ways, and the assumption that one person’s pain is the same as another person’s pain is
entirely untrue. And I think for neurodivergent individuals, their pain may well take quite a
different shape to that of somebody who’s neurotypical.

Evans: That’s a difficult concept for many people because pain is pain, how I feel pain is
because it hurts.

Kelly: I often ask my patients, if I believe that they do have a neurodivergent condition, if
they can relate to the following little cameo, and this is what I ask. So, I say “look, I’m
going to cycle home from the hospital tonight, and I’m going to fall off my bicycle and break
my leg, and I’m going to be in a lot of pain and I’m going to need some very strong
painkillers. But within six months, I’ll be back on my bike and I’ll be off those painkillers
because my leg will have healed. The alternative is that I get all the way home, I don’t fall
off my bike, but I find that when I get home my partner has run off with the next door
neighbour and isn't coming back, and six months later she’s still not coming back. And
none of the painkillers in the world have relieved that pain, and that pain continues.” And
then I ask “do you relate more to one of those pains than the other?” And very often the
answer I get favours the second manifestation of pain. So what we’re looking at there is a
significant emotional contribution to pain, it’s not necessarily the pain that we or I would
expect somebody to mean when they use that word, but it often rings bells and patients
will sometimes say “so that’s why my painkillers aren't working”, which is really eye
opening. So, about one in five of the patients I see in rheumatology clinics I think is
neurodivergent, and I started noticing about five years ago a very strong association
between neurodivergent traits and the presence of chronic pain, which is often related to
their joints and muscles but may actually take a number of other forms.
The commonest co-existing conditions that they report include things like migraine, irritable
bowel, changes in their circulation, and a variety of, if you like, softer subjective symptoms
around anxiety, fatigue, and an inability to adapt to change. We started to notice an awful
lot of patients were young, younger than they used to be, particularly those patients who
were referred with musculoskeletal pain and met criteria for fibromyalgia. And the common
threads that ran through included the fact that most if not all of these people exhibited
hypermobility.

Evans: That’s rheumatologist Doctor Clive Kelly. So, what is hypermobility? Doctor Jessica
Eccles is a clinical academic, she’s an Associate Professor Reader in Brain-Body Medicine
in the Department of Clinical Neuroscience at Brighton and Sussex Medical School. She
also works within the NHS in the adult service diagnosing ADHD, autism, and Tourette’s
syndrome. And she’s investigating the link between body and brain particularly as it relates
to hypermobility.

Jessica Eccles: Hypermobility is a common variation in how the body is built, in terms of
the building blocks that form something called connective tissue. And connective tissue is
everywhere in the body, it’s a kind of cling-film that is around organs and is everywhere
around bones and joints, and in the lungs and in the gut. And there are lots of different
ways to define it, but if we’re just looking for people with widespread joint hypermobility,
about 20% of the population actually have flexible joints. Now, having flexible joints itself
can be an advantage, Michael Phelps, Simone Biles, as athletes and Olympians, they
have joint hypermobility. Interestingly, they both also have ADHD. Not all people with
flexible joints have problems, but the first recognised problems were things like joints
slightly coming out of socket, widespread pain, things like hernias, bruising, the list goes
on and on. But what we have realised now is that joint hypermobility is associated with
pain conditions, it’s associated with fatigue conditions, it’s associated with troublesome
gastro symptoms, so what you might think of as irritable bowel syndrome, gastritis, all
sorts of things, even things like asthma are more likely if you are hypermobile. And pain is
one of the biggest issues.
In recent years there’s been a lot more interest in how hypermobility might affect more brain things, so thinking about things like anxiety, depression, and also increasingly things like ADHD and autism. So, it sounds like a bit of a leap but when we were first looking at hypermobility when I came to Brighton and Sussex Medical School with Professor Hugo Critchley, he asked me to investigate the link between hypermobility and anxiety by looking at brain scans. So we took seventy-two people who had been in the Brain Imaging Centre having had research brain scans, we worked out if they were hypermobile or not, and we found that the hypermobile ones had different structure to a part of the brain called the amygdala, which is responsible for fear and emotion processing. But not only did we notice that, we noticed that the greater the number of hypermobile joints, the smaller a part of the brain that’s involved in where you think you are in space, so proprioception. We noticed some differences in brain structure that had been reported in ADHD and autism, so we were thinking “what’s the relationship between joint hypermobility and anxiety?” It made us think “is there a relationship between joint hypermobility and neurodevelopmental conditions like ADHD and autism?”
We took 110 people who were in our neurodevelopmental service here in Sussex, and we
assessed them to see if they were hypermobile, whether they experienced pain, and
whether they experienced symptoms of abnormalities of the involuntary nervous system,
so the autonomic nervous system. Those symptoms are things like feeling dizzy or light
headed, or heart beating when you stood up. Of those 110 people, they had a variety of
diagnoses, some had ADHD, some had autism, some had Tourette’s syndrome, some had
combinations of that. We found that 50% of the neurodivergent patients had hypermobility,
compared to only 20% in the general population. And when you do the maths on that, that
means that if you had ADHD or an autism diagnosis that you were four times more likely to
be hypermobile than the general population or the comparison group. But what was really
striking was that in the female patients diagnosed with ADHD or autism, nearly 80% of
them were hypermobile. And then what was interesting was that the neurodivergent
patients had much higher symptom levels of pain, musculoskeletal problems, and also the
problems with the involuntary nervous systems, the feeling dizzy and light-headed on
standing.
And when we put that all together into a mathematical model, what it suggested to us was
the relationship between being neurodivergent, so having an ADHD, autism, or Tourette’s
syndrome diagnosis, and experiencing physical health symptoms was because of
underlying joint hypermobility.

Evans: What is going on in the brain, then, to link these things?

Eccles: What I suspect, and we do have some studies that help support this idea, is that
during the process of development, the features that are affecting how the connective
tissue develops are also affecting how the nervous system develops. So, we know that
both hypermobility and neurodivergence runs strongly in families. Just as in autism, there
are some rare conditions where there are single genes that are identified that might be
related, it’s the same thing in hypermobility. There are some very rare forms of the Ehlers
Danlos syndromes in which there are known genes that are affected. But what we know is
that the vast majority of cases, there isn't a single identifiable gene but it’s very clear that
these are hereditary conditions. So I suspect that the processes affecting connective
tissue development are also affecting neuro development, and that what this might be
particularly doing is affecting the development of the sensory system. So, a lot of
neurodivergent people experience sensory differences. We think of sensory stuff as taste,
touch, smell – it’s also the internal sense of what’s happening in our body and the sense
of where we are in space, and sensation is obviously so important in pain conditions. So I
suspect that this is where the common thread is through the structure and functioning of
the sensory systems.

Evans: Jessica Eccles. Clive Kelly again.

Kelly: We see the same traits in males as we do in females, but it’s fair to say that
something around 85 to 90% of the patients that I see with these features are female.
Which of course is the opposite to the ratio of autism within the community, as measured
by traditional standards. Up to recently, the quoted ratio was four to one, male to female,
so 80% of people with a diagnosis of autism would have been male five or ten years ago.
Whereas what we’re seeing is that when you look at the pain manifestations we’re seeing
quite the opposite ratio with at least 80% of our patients being female. And that itself leads
to the question of why this is a reverse ratio.

Evans: Could it be something to do with how, firstly, who is diagnosed as being
neurodivergent, and that males express it in a completely different way to girls?

Kelly: Yes, I think it could. And what we recognise is many girls will subconsciously hide
their diagnosis through masking or camouflaging. They’ll suppress some of their more
overt autistic traits in order to fit in with social mores. But that’s at a price, and that price is
often one that leads to a rebound negative effect on their condition in later life. And in
many respects, that can take the form of not just psychological difficulty and trauma, but
physical pain and trauma. And what I mentioned a little while ago, the bicycle story, I think
epitomises that because many of these young women will accept that much of the pain
that they perceive is a reflection of their camouflaging, and that pain is expressed as much
emotionally as it is physically.

Evans: Clive Kelly. Ren Martin is a learning disability nurse who’s worked with autistic
young people and autistic offenders. She’s autistic herself, and is an assessor for Healios,
an autism and ADHD assessment company.

Ren Martin: We get children coming to us who have got a range of differences or
difficulties that they’ve experienced, someone will have suggested neurodiversity at some
point, so they come to us and we’ve got assessment tools, the ADOS, the ADIR, that are
universally recognised, and we interview the parents, we interview the child, and we make
a diagnosis or not diagnosis as it needs.

Evans: You’re autistic yourself?

Martin: Yes.

Evans: But how do you recognise that in somebody?

Martin: When we’re doing an assessment with the child, we have set scripts that we use
but what we’re looking for is social communication, any sensory differences, any repetitive
behaviours. So, you might get a child who doesn’t make eye contact, has limited gestures,
facial expressions can be quite neutral. We use conversational cliffhangers, so we might
say “oh, my cat was at the vet yesterday, I’m going on holiday on Friday”, and a lot of
autistic people won’t respond to that. If you’ve ever chatted to somebody at a bus stop and
they’ve told you a fact even though you’re not really invested in the conversation, you’ll go
“oh, really? Oh, that’s nice.” But we tend to find that autistic people don’t do that, they just
kind of look at you, “that’s not relevant to me.”

Evans: We’ve been talking for over an hour before, and we’ve talked about absolutely
everything, families, weather, even the rules of rugby, you were part of that conversation,
so what were you doing especially to be part of that conversation?

Martin: I was copying what everybody else does, I guess. It’s masking. It’s trying to fit in.
Girls are usually a lot better at that than boys. I know nothing about rugby but I nod and
smile when people are talking about it because I know that’s what’s expected of me,
because when you’re at school and people think you’re weird because you don’t do things,
you quickly learn how to do them so people stop perceiving you as weird. I’d like to say it’s
a skill [CHUCKLES] but it’s more of a survival thing, to be honest. You’ve got to fit in,
otherwise you are the weirdo, unfortunately. And a lot of my younger life, I was the weirdo
because I didn’t get it. And now I fit in.

Imogen Warner: I’m Imogen, I’m sixteen years old, and discovered that I was autistic at the age of thirteen. I hadn't attended school for two years. I live in South Wales with my parents, younger sister, two house rabbits, and a tortoise. I aspire to be a writer, and I feel it is important for people to see and understand the reality of being a young autistic person.
I went through my primary school years knowing that my mind worked very differently to those that surrounded me, knowing that I was experiencing life in a much more viscerally confusing level than my peers, and yet I could find no explanation or term for this. I was the child playing with the younger children because my classmates could not understand me. I was the child laughed at and mocked by a few of my teachers. I was the child who was so affected by insults intended as humorous remarks. And most of all, I was the child with such a strong sense of justice and equality, but I could not for the life of me understand why those I was growing up with didn’t see things the same way.
Masking is a survival skill autistic people very commonly develop in order to hide their traits, usually to avoid mistreatment or mockery. Masking is never the solution to anything, especially when it comes to mental health and anxiety, or fear surrounding school. Schools should encourage students to accept and work with their worries, not suppress them. You can never suppress or mask something forever, I know that from my own experience.

Evans: Masking is very important for people on the autistic spectrum, but is it damaging
as well?

Martin: It is really exhausting to do it. If you imagine going to work tomorrow and
pretending to be a different person, you don’t know the rules, you don’t know what’s going
on in the situation but you have to pretend that you know what’s going on. Autistic girls
might have different interests, and they have to pretend that they’re interested in their
friends’ interests, in fashion or boys or whatever it is when really they just want to go home
and organise the crystals or line all the books up in the right order. Even in the workplace,
personally I used to check the cafe in work to make sure nobody I knew was in before I
went in, because I didn’t want to have to sit and talk about inane things that they’d done for
the weekend, so I used to avoid people, really. It’s just really exhausting having to think
about everything that you’re do and say that other people just seem to be able to do it.

Evans: To the outsider, to the uninformed, you would just be considered as a loner or
antisocial or “oh, don’t bother with her, she’s not bothering with us”.

Martin: [CHUCKLES] Pretty much. That’s how I’ve always been viewed, at school and in
the workplace. It’s only over the last maybe ten years that I’ve actually told people that I’m
autistic. And then they’ll say “oh, but you don’t look autistic.” Then “hmm, how can I do an
autism for you?” But if I didn’t say I was autistic, they’d just think I was rude. I don’t go to
social events, I don’t go to work nights out, I don’t do birthdays, I don’t do any of that
because it’s so exhausting for me and such a social struggle. But then when I tell them I’m
autistic, they think I’m not autistic because I’ve got a job and I can make eye contact,
which is a big thing apparently.

Evans: How did you deal with having chronic pain and the autism?

Martin: It’s really difficult, and I think having the autism affected the way I thought about
The chronic pain. Not having that insight into how other people felt when I was younger
Meant that I didn’t know how I felt. So, I often don’t recognise if I’m excited or anxious, and
I will still have an event coming and say “I can’t go to that because I’m too anxious”, and
My husband will be like “no, you’re excited. That’s what you’re feeling.” And I think the
Autism affected how I felt the pain, and also how I kind of reported the pain, and how I just
accepted a doctor telling me “no, there’s nothing wrong with you, go away.” A lot of my
mental health when I was younger was around the fact that I was in pain, didn’t know why,
and nobody believed me, so I actually thought I was imagining it for a long time when I
was younger. My mum used to tell me that I was making it up, so then I was like “am I
making it up? Am I really in pain? Does it really hurt?” It can be very, very difficult when
you don’t fully understand emotions and feelings yourself to kind of work out what’s real
and what’s not when other people are telling you it’s not.

Evans: Ren Martin. She has four children, three of whom are neurodiverse. So, could that
be coincidence, or is there evidence of a genetic link? Clive Kelly again.

Kelly: There is. If one looks at the literature on inheritability, certainly we’ve shown that
within fibromyalgia it’s something that tends to run in families, and if you’ve got a mother
who’s got fibromyalgia, your risks of developing it are probably increased by a factor of
three to four. I think when one starts to look at the links with neurodivergence within
families, those links become even more statistically significant, so that you could be
looking at a factor up to fivefold increased risk in a neurodivergent mother of any one of
her offspring being neurodivergent. And then there’s the order of birth, there’s some
evidence, for example, the first born is more likely to be overtly neurodivergent than
subsequent siblings. There’s also a link with autoimmunity, so if a mother develops thyroid
disease, there seems to be a strong connection with her next child having autism in
particular. There are also links with other autoimmune disorders like lupus, Sjogren’s
syndrome, and rheumatoid arthritis. So there are clearly links but they’re not linear and
they’re not simplistic in terms of dealing in inheritance. So, much more complex, and
they’re related to a number of other factors, including early life experiences and
environment. But I think that this correlation between pain, in its most widely interpreted
use of the word, and neurodivergent traits is fascinating not just because of the two being
linked together, but at the top end of that correlation what we found was that those with the
most pain and the most neurodivergent traits also exhibited a number of other fascinating
features; they were more likely, for example, to have food allergies or intolerances – which
leads us ultimately into a discussion around the links between neurodivergence and eating
disorders – but they were also more likely to have gender identity issues. And the
interesting thing I think for us was at the top end of the correlation, the majority of people
who did have severe pain in association with quite significant autistic traits were far more
likely to identify as either non-binary or transsexual. And nobody’s really explained why, but
I think that that’s a consistent observation that’s now come through the literature. And if
you look at the gender identity clinics that were set up in The Tavistock, a very high
percentage of the young women in particular referred to those had expressed concern
around their interaction socially, and many of them carried a diagnosis of suspected or
confirmed neurodivergence. So that’s another element to this which although it may not
seem directly relevant to physical features it plays such an important part in an individual’s
life and identity that I think it would be wrong to neglect that. And there’s another element
which relates to something called mast cell activation syndrome, it presents often with
asthma, eczema, itch or allergy, and this range of symptoms which are mediated by the
release of a chemical called histamine from mast cells is something that seems to be also
quite strongly associated with neurodivergence in general and pain in particular. But it is
worth saying that the combination of a Histamine 1 and Histamine 2 blockade is highly
effective in treating many patients with mast cell activation syndrome. But I’ve also noticed
that in some individuals, it can lead to a reduction in other manifestations, including pain.
So that’s another area of great intrigue, is by reducing the availability of histamine by
blocking the receptors, both H1 and H2 receptors, then you can reduce not just their
allergy and their itch, but perhaps their anxiety and their discomfort.

Evans: Clive Kelly. Jessica Eccles again.

Eccles: We found that four-fifths of the patients with fibromyalgia and ME/CFS diagnoses
in fact had hypermobility. But only a fraction, I think less than a fifth of them, knew that they
were hypermobile. So, knowing that you’re hypermobile is so important because it might
be that a physio works with you in a slightly different way, that you might be prone to over-
extending your joints, but you also might have quite a weak middle, the core stability. And
so working in a strengthening way about building up your core could make a big difference
to pain elsewhere. The other thing about hypermobility is there’s a lot of people with
hypermobility, particularly when they walk, have flat feet. Now, that seems a bit odd,
doesn’t it? And you think maybe that’s not particularly important, but actually having the
right arch support can make a huge difference to back pain, hip pain, knee pain, even neck
pain. So making sure that the joints are properly supported can make a huge difference.

Evans: But for those who don’t know they’re hypermobile, don’t know they have
hypermobility, how do you test that?

Eccles: To be diagnosed with hypermobility, you need to be examined by a medical
professional. But there is a five part questionnaire designed by Rodney Graham and Alan
Hakim that indicates whether you might be hypermobile or not. So there are five questions:
can you now or could you ever place your hands flat on the floor without bending your
knees? Can you now or could you ever bend your thumb back to touch your forearm? As a
child did you amuse your friends by contorting your body into strange shapes or doing the
splits? As a child or teenager did your shoulder or kneecap dislocate on more than one
occasion? And do you consider yourself double-jointed? So, if you answer two or more to
those five questions, there’s 80% likelihood that you are hypermobile. So there are
lots of people who might actually be autistic or have ADHD but have no idea, and with the
difficulties with waiting lists, the likelihood of getting an assessment is actually quite
difficult. So, we use the same thing. We use some screening questionnaires to see
whether people had traits of ADHD and autism.
In a large study, we looked at 3000 people who had COVID, and we looked to see whether they had recovered from COVID or not, and whether there was any relationship between being hypermobile and having recovered from COVID. And interestingly, we found that having hypermobility didn’t mean that you were more or less likely to catch COVID but it meant that unfortunately you were less likely to recover from COVID. So hypermobile people were 30% more likely to have not recovered from COVID, so to develop Long COVID.

Evans: Okay. So if you think you’re hypermobile, what should you do?

Eccles: The best thing is to try and discuss it with your GP, but there are some really
useful resources that may help you have that discussion. The Ehlers-Danlos Society in the
UK has produced something called the EDS GP Toolkit. Now, that’s for all hypermobility
diagnoses, not just Ehlers-Danlos. There are really useful patient organisations, so
SEDS Connective, and also the Hypermobility Syndromes Association, HMSA, they have
useful resources. So that would be the first thing that I would do if I was wondering if I was
hypermobile, would be to read some of these resources and then go and have a
conversation with my general practitioner. There is also a really good book that is available
on the internet by a woman called Claire Smith, it has a very long title but it’s essentially
‘Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum
Disorder’.

Evans: Jessica Eccles. And you’ll find all those links on the Pain Concern website, I’ll give
you more details later. SEDS Connective is a neurodivergence and hypermobility charity, it
advocates in national health programs in education, health, social care, employment, and
transport accessibility. Jane Green, its founder, is autistic and disabled. An ex-Assistant
Head Teacher, she’s worked in all sectors of education – schools, local authorities, and on
a national level. She led the content for the first school toolkit, a free resource for staff to
help support pupils with joint hypermobility syndrome, or the Ehlers-Danlos syndromes.
So, what are the main issues that members of SEDSConnective come up with?

Jane Green:The one questions usually is how to get a diagnosis for themselves, or how to
get a diagnosis for their children, and help in school, or be believed, “can anyone believe
me?” That’s so key. And when people say “do we really need a diagnosis?” I go back to my
years as a teacher and say I remember when a SENCo, a Special Education Needs
person brought me in to do training – this was decades ago – and I did the training and
they loved it, it was fairly standard in those days, it didn’t have hypermobility in. And this
was a primary school I was training in, she said “my child is at a secondary school, I need
to see the Head Teacher for a big formal meeting because they’re getting in trouble.
Should we bring him along?” And I said “well, does he want to be there? Would it be
helpful?” And she said “I don’t know, but we’ll be talking about his diagnosis and we
haven't told him yet.” And I said “how old is he?” I was trying to be neutral. They said
“fourteen.” And I said “well, if he’s getting in trouble and you haven't told him why, I think it
might be a good idea.” I didn’t want to say “of course you should.” And I was quite
surprised as a SENCo she didn’t understand the huge belief in yourself by having a
diagnosis, that you’re not making it up. I was called a hypochondriac nearly all my life.

Imogen Warner: Why wasn't I given an autism assessment sooner? A diagnosis is
something incredible for someone with autism. It’s not only an explanation, but it’s also a
way to seek support. I can clearly remember the moment I was officially told I was autistic.
I felt a huge weight lift from my shoulders. I’m not weird, I’m not abnormal, and there’s
nothing wrong with me, and it feels amazing to know this.

Evans: Imogen Warner, definitely not weird. Ren Martin of the autism and ADHD
assessment company Healios.

Martin: We get a lot of parents saying the school can’t put in additional support unless
they’ve got a diagnosis, that some parents and schools feel like the child will be better off
in a non-mainstream setting, but again those aren't available without a diagnosis in all
areas. Sometimes for the child, if you’ve got a child that’s grown up feeling different,
feeling that they don’t fit in, then a diagnosis can help them kind of validate their own
feelings, make sense of how they’ve felt growing up. It can be a safety net for them when
they’re older, a lot of our neurodiverse females have mental health difficulties, have pain
difficulties that are linked with the condition, and it can kind of get them seen instead of just
somebody with pain or mental health issues, the autism diagnosis tends to get other things
considered.

Evans: But all those issues you talk about, about pain, about mental health issues, quite
often a young person, a parent with a young person, will be sent around all the different
departments, rheumatology, psychology, pain, goodness knows what, and there may be no
joined up thinking between all these different departments to say “actually, this is all part of
one issue; autism.”

Martin: Yeah. Unfortunately, there’s still a lot of work to be done in that area. I personally
have got autism, have got hypermobility syndrome, I’ve got fibromyalgia, I suffer from
chronic pain, none of that was considered alongside my autism diagnosis until I was in my
late fifties. But I’ve always had chronic pain, I’ve always had these difficulties, but none of
them were actually linked. While I say that a diagnosis is useful for those things, there’s
still a lot of research that needs doing in those areas, a lot of awareness raising, a lot of
GPs and consultants don’t actually make the link. We get a lot of females coming in with
really bad period difficulties and not being able to cope with them, and we’re finding more
and more autistic females have these difficulties but they’re not always linked together, so
this is still an area where it’s kind of whether your GP or whether your consultant makes
that link or not.

Evans:Ren Martin. Parents Voices In Wales is a social enterprise company supporting
families where children have neurodivergence. It campaigns for improved mental health
and neurodiversity services by working collaboratively with all sectors in Wales. Ceri Reid
is its founder.

Ceri Reid :From Senedd research, we know that post-COVID especially we’ve had a
massive influx of school based avoidance. There’s been massive demand on ND services,
neurodevelopmental services, across Wales. We know that there’s issues with school
exclusion. We know that 70% of those kids excluded from school are neurodivergent. We
know that school exclusion leads to an increased risk of school offending. We know that
5% of the population have ADHD in the general population, whereas in the prison service
they have 30%. We know that offenders who’ve been excluded from school, a 60% rate of
exclusion from school. So we’ve got a systemic problem. We’ve not met the needs of kids,
we’ve excluded them, and they are then the product of our criminal justice system.
Children who are neurodivergent have strengths as well as challenges, but when a child is
distressed because we haven't met their needs, they’re not going to show us their
strengths, they’re going to be in distress. They’re more at risk of self-harm, eating
disorders, challenging behaviours, emotional disregulation. There’s a paper by Professor
Ann John at Swansea University who in 2021 looked at the rates of school avoidance, and
she found that there’s a higher rate of neurodivergent learners experiencing school
avoidance, and if they’re not in school they have a higher risk of self-harm and suicide.

Evans: Imogen Warner who we’ve been listening to also has chronic pain and she’s
missed a great deal of her schooling.

Warner:An educator’s duty is to look after their students and to notice signs that they are
struggling, particularly when it comes to autism. Trying to mask and ignore my concerns
may have worked for a while, until it didn’t. Not only did I have to deal with school work, I
had to deal with my own masking experience, perfecting facial expressions, learning how
to react appropriately, learning how to laugh when needed even though it grew exhausting.
It’s like an extra workload. And even though no one was asking me to do this, I hadn't had
my autism diagnosis, which led me to believe that I had to blend in with social standards at
the risk of being deemed weird or unapproachable. Had I been diagnosed earlier, I may
have felt differently.

Reid: It’s not easy teaching thirty kids in a room. Six of those children will be
neurodivergent, looking at our current data, so 20% of the population. You can’t expect
teachers to differentiate in their instruction and curriculum for six children so what we need
to do is differentiate for everybody, and that means that you deliver an inclusive curriculum.
But we also understand that our environment can impact the regulation of a child and
increase the anxiety levels. We know that from our trauma informed research and practice.
We have to understand that every interaction – and these are the words of
Doctor Karen Trisman, who’s a trauma informed specialist – and she says make every
interaction an intervention. Where we start focusing on our calm relational approaches with
these kids, giving them a voice, “what do you need? What do you need from me, how can I
help you?” And sometimes they won’t know. But if you build a good relationship with them
and they have an autonomy in their environment, they will soon be able to tell you, the
ones that can.
For the ones that can’t, please listen to the parents. They know them best, they’re the
experts in their child. And schools are the experts in education. But together, it makes a
great team.

Reid: And very often, we just need a point of contact from home to school, a trusted adult
that that child can identify with in school the parents can relate to and say “look, the child
has had a problem this morning, they’re coming in a bit disregulated, can they sit with you
for five, ten minutes before they go to lesson?” And then that child would transition to
lesson. It’s much easier to act preventatively like that

Evans: That was Ceri Reid of Parents Voices in Wales. Ren Martin, autism and ADHD
assessor for Healios again.

Martin: I can remember having pain when I was in infant and junior school and being told
it was for attention, or being told it was because I didn’t want to go to school, which I really
didn’t. And just the fact that you’re going back to the doctors and nobody believes you,
you’re constantly saying “I’m still in pain”, and they’re like “well, we can’t find anything
wrong, so you’re not.” And then when you get to fifty, they say “oh, it’s probably the
menopause”, and it’s like they’re grateful to have something to blame it on then. It really
impacts on your confidence, you start to think that you’re actually imagining it, that are you
feeling pain that nobody else feels? Like am I actually mad? Sometimes when the pain is
so bad and nobody can find the cause for it, you really start questioning yourself.

Evans: Now, you’re a mother, your children are…

Martin: I’ve got four sons, three of them are neurodiverse.

Evans: So how did you manage those three going through schooling? And the one who’s
not neurodiverse?

Martin: School was really, really difficult for my oldest son. He started running away from
school when he was about seven. So I would take him in the door, I would get to work, and
I’d have a phone call from the school saying “he’s on the roof, come and collect him.” So,
he was very challenging to keep in school. A lot of his difficulties could have been helped if
school had been more understanding at that point. He had a lot of sensory difficulties, he
couldn’t wear the uniforms, didn’t like the tie, didn’t like the shirts, and they would not allow
him to wear a different uniform from the other children, so his answer to that was just not
to go into school. He got to a point where he would wear a tracksuit under his uniform, and
school wouldn't tolerate that either. I was actually a lecturer at that point, and I got so
frustrated by the lack of service and the lack of support with the difficulties that we were
experiencing that I retrained as a nurse, and at that point I was researching lots about
parenting techniques and what we could do to help. But it was really challenging to raise
children with more needs than mine when the services involved, the education system
involved, wouldn't back down on anything. It was like there was no compromise for
somebody who couldn’t cope with the noise in the classrooms, who couldn’t eat in the
dinner hall, and who couldn’t wear a uniform. Those things were not backed down on by
schools.

Evans: Do you think things have changed?

Martin: would like to say yes, and I’m sure some people have really good experiences
with some schools. From the families that I work with, I’d say it’s not changed that much, to
be honest. A lot of families are coming to us for a diagnosis because school won’t support
them, won’t accept that the child might be neurodiverse. A lot of parents come to us whose
children have been out of school for years because they can’t eat in a dining hall or they
keep being given detentions for things that they can’t manage.

Evans: So, education for educators, for the teaching staff, how do you think that should
progress?

Martin: My husband’s a lecturer, and he gets autism awareness training, he knows a lot
About autism obviously because we’re all autistic in the family, and he comes home and
we often joke about the autism training that he’s had. It’s inadequate, it really is. We’re
still on old stereotypes, we still don’t recognise that girls mask, we still don’t recognise that
boys can have sensory difficulties. They don’t recognise the difficulties, it’s very much they
might not make eye contact so don’t force them to make eye contact, and they might
appear rude but they’re not being rude. But it doesn’t take anything else into account like
the sensory difficulties if somebody behind a child is tapping on the desk and they cannot
cope with that noise anymore. Or the sensory difficulties of a child that cannot wait to go to
the toilet but they’re not allowed to go to the toilet. And this is where we see the behaviours
in our children, and schools aren't aware of those differences.

Evans: So how do you change that?

Martin: With more education. We need more healthcare workers to be aware of autism.
We need the training to be actually meaningful and not outdated. There’s a lot of NHS
Trusts are doing training by experience, so they get experienced people with autism who
have experienced autism and ADHD to come in and give talks on what it’s like to be an
autistic person in the services, and I think that is really valuable. I think that should be in
schools as well, we should have autistic children telling teachers, teaching the teachers
what’s difficult for them and what isn't.

Evans: Ren Martin. In 2018, Senedd Cyrmu, the Welsh parliament, published ‘Mind Over
Matter’, its report on the step change needed in the emotional and the mental health
support for children and young people in Wales. One section addressed what it calls the
missing middle children, those children and young people who need support but do not
meet the threshold for specialist CAMHS, that’s Child and Mental Health Services, or
neurodiversity support. Ceri Reid again.

Reid: These are the kids in mainstream school, the ones that actually Parents Voices in
Wales advocate for the most. These are the kids who are considered lazy or
troublemakers or the chatterbox in the class or the child who’s always daydreaming, or the
difficult child, the child who might be experiencing isolations and exclusions in mainstream,
the kids who are not engaging in education. And just because their challenges haven't
been met, haven't had the support that they require. So, missing middle kids are the kids
who are not severe enough maybe, or haven't failed enough in school. They won’t be two
years behind like was previously required in order to get assessment, for dyslexia, for
example, you’d have to be two years behind. Two years behind with a mental health
condition, why are we doing that? Why did we ever do that? So now we’re looking at kids
who have potential putting in those extra study skill sessions, having the small groups to
support them, being aware that some transitions are going to be difficult, let’s make
accommodations for them. It’s not rocket science, it really isn't. It’s just being flexible and
not assuming that just because they’re little people that they don’t have emotions and they
don’t react the same.

Evans: But how do you educate teachers to recognise what is going on with these missing
middle children?

Martin: Teachers need a better understanding of neurodiversity. I think if they’ve got a
child that’s got sensory issues or that can’t cope in the classroom, or is having tantrums or
is overwhelmed, they need to recommend that that gets investigated, the causes of that. If
a child is being disruptive in the class, explore why they’re being disruptive, don’t just
accept what you’re seeing at face value, look at what the cause of that behaviour is. I
appreciate that when you’ve got thirty children in a class, it’s difficult to do that, and
that’s for the government to work out, but I really do think that more training, more current
training, and teachers being empowered to actually question why does a child behave like
that in a class, and is there somewhere I can go for advice? Would be really useful.

Evans: And maybe the kids that lose out on this are what’s been described as the missing
middle kids who are not disruptive, but just quiet, maybe.

Martin: Yeah. And that’s always going to be the case, the kids who mask really well, who
are compliant, who don’t have any problems, who are really helpful and always want to
help the adult, and then when they transition to secondary school it usually goes
disastrously wrong, they’re the children that we need to be exploring why has it gone
wrong for them so dramatically, instead of just ignoring the problem until it becomes a
crisis. We often get young people, eleven, twelve, thirteen, who have managed one term
at secondary and then either stop attending or start self-harming or start having anxiety
and depression, and nobody ever looks at what caused that difficulty in the first place.

Evans: That was Ren Martin of the autism and ADHD company Healios. There are written
transcripts of all editions of Airing Pain on Pain Concern’s website, which is
painconcern.org.uk and there you’ll find a full list of all the organisations who have
contributed to this edition of Airing Pain, and more. I’ll just remind you that whilst we in
Pain Concern believe the information and opinions on Airing Pain are accurate and sound
based on the best judgements available, you should always consult your health
professionals on any matter relating to your health and wellbeing, they’re the only people
who know you and your circumstances, and therefore the appropriate action to take you
your behalf. Now, it’s important for us at Pain Concern to have your feedback on these
podcasts so that we know that what we’re doing is relevant and useful, and to know what
we’re doing well, or maybe not so well, so do please leave your comments or ratings on
whichever platform you’re listening to this on, or the Pain Concern website, once again, it’s
painconcern.org.uk, and that’ll help us develop and plan future editions of Airing Pain. I’ll
leave you with Doctors Jessica Eccles and Clive Kelly on the challenges faced by their
colleagues in primary and secondary medicine in recognising that link between
hypermobility and neurodivergence.

Eccles: Hypermobility associated problems and issues probably constitute a considerable
amount of GP consultations, particularly repeat GP consultations, and things like pain and
fatigue are definitely in the top five for GP consultations. And when you throw in things like
anxiety, and queries about autism and ADHD, this is going to be a huge bit of general
practitioners’ work. But the real challenge is to work out how we change the medical
school curriculums, how we gear up general practice and other doctors to recognise this. I
think if we did a research study, if we went into general practice and basically said “how
many of these consultations are actually to do with hypermobility?” I think we’d probably
find at least a third, if not half. But whether that is actually understood and acknowledged
is a completely different kettle of fish.

Kelly: We’ve identified a whole range of physical as well as mental health issues linked to
being neurodivergent, and I think that because in the past girls have so often gone under
the radar, the cumulative effect of this on physical disorders on women is huge, and we
see, for example, an increased instance of obesity, diabetes, and coronary heart disease
as a consequence occurring twenty years earlier in neurodivergent women than in
neurotypical women. So, I think for the global physician, it’s really important to have an
appreciation of that association, and therefore to be aware of the clues that might indicate
neurodivergence in an individual because that could impact on the threshold at which you investigate for these other conditions.
Links Referred to in this Episode

End

Transcribed by Transcription Scotland

Links Referred to in this Episode
• School toolkit for JHS and EDS - School Toolkit for EDS and JHS (https://theschooltoolkit.org/)
• Parents Voices in Wales: Resources & Key Documents – Parents Voices in Wales CIC (https://parentsvoicesinwales.wordpress.com/key-documents-links/)
• Autistic Girls Network: https://autisticgirlsnetwork.org/
• Ehlers-Danloss Society: https://www.ehlers-danlos.com
• Hypermobility Syndrome Association. - The HMSA | The Hypermobility Syndromes Association (https://www.hypermobility.org/)
• Healios: https://healios.org.uk/
• SEDSConnective: https://www.sedsconnective.org/

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