RECORDED: 10 Mar 2026
SUMMARY KEYWORDS:
SPEAKERS: Megan Gilmour, Katherine Gill, Sophie
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG Telecom Foundation, dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need.
Hi, I’m Megan Gilmour, MissingSchool Co-founder and CEO, and this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening
Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journeys despite complex health challenges.
Today, on Live & Learn, we have Dr Katherine Gill and Sophie. Dr Katherine Gill is the founder and president of FND Australia Support Services, an organisation dedicated to improving awareness, support and outcomes for people living with functional neurological disorder.
Katherine is an occupational therapist and researcher. She brings both professional and lived advocacy experience to her work. Katherine is also a founding member of the International FND society, and continues to contribute to education, advocacy and research in FND care.
Sophie is 16 and lives with FND. She is currently in year 12 at a high school in Queensland. In 2025 she began experiencing seizures at school and staff were unsure how best to support her. A high achiever with strong friendships, Sophie wanted to complete senior school alongside her peers, despite pressure to move to online learning or reduce her subject load, she has continued to advocate for her place at school. Welcome Katherine – Kate – and Sophie, we’re so excited to have you on Live & Learn.
Katherine Gill 02:15
Yes, thank you for having us.
Megan Gilmour 02:18
So today, we’re here to talk about supporting school connections for students with complex medical or mental health conditions. So, let’s head to my first question.
Tell us how functional neurological disorder – FND – impacts kids, and why it’s something every Australian needs to know and care about.
Katherine Gill 02:40
Okay, so I’ll start so FND is a condition. It’s a neurological condition. It presents with quite debilitating neurological symptoms. Some people might experience seizures. They might have mobility impairments, problems, walking problems, with movement, increased movement, for example, tremors or decreased movement for example, paralysis.
There can be other problems, such as speech problems. Some children can go completely nonverbal. There can even be continence issues, problems with feeding, swallowing and sensory disturbances.
For example, I’ve had children who are legally blind.
So, it’s a very debilitating condition, very distressing to live with. So, you can imagine, you know, growing up can be challenging. Going through school and dealing with a condition like this is incredibly challenging.
It’s incredibly distressing for the child, for the family, for the siblings, and it is important for people to know about it, because we want people to know how to support people with FND. For too long, people with FND have sort of been languishing between systems, no-one really taking ownership of the condition, not getting the right care.
Care for kids with FND is pretty dire across Australia. A lot of health professionals don’t know how to support people with the condition, and a lot of schools, educational institutions, workplaces, don’t know how to support someone in their setting with FND, so definitely important for people to know about it.
Megan Gilmour 04:21
Sophie, did you want to add anything to that question?
Sophie 04:25
Yes, I would probably say that kids with FND, because everyone around them most likely doesn’t have it or doesn’t know about it before they are diagnosed, it’s hard for them to kind of keep up with their friends or their peers or continue to do normal things for their age group.
So, I think there’s a lot of, kind of, feeling a little out of place or misunderstood in situations that are normal for everybody else their age.
Megan Gilmour 04:58
Yes. So important, and certainly all of those things that you’ve both said there are important things that every Australian needs to know and care about, and we’re going to deep dive in here. So, we’re going to hear more compelling information about this, this health condition.
So many people probably assume things about FND. What’s the million-dollar question you get from parents or loved ones Kate, when their child experiences or is diagnosed with FND?
Katherine Gill 05:32
I think the parents are lost, so, often they’re not getting the information and the support that they need. So, they want to know, how can they help their child get better and also, will their child get better? You know, often kids get it really badly and a lot of different disabling symptoms all at once.
So, it’s overwhelming for the family, and they want to know will my child ever get better? And how do I help them? What can I do to support them?
Megan Gilmour 06:02
And what’s the most important thing that you want them to know when they come to you?
Katherine Gill 06:09
Especially for parents, so if there’s a child with FND, the outcomes for kids with FND is better than adults. So, the prognosis, the young person’s brain is more neuroplastic, so there’s more chance that their brain can be effectively rewired in to developing normal movement patterns.
So, I don’t want them to take sort of an adult [perspective] and see what’s happening in the traditional adult world of FND and apply that to their child.
We really want children with FND to get the right support, to get the right intervention and support in their schooling and their support to maintain the normal developmental life roles of a child growing up and get them back on the right track and towards recovery.
Megan Gilmour 07:03
Yes. Sophie, what about you? Did you have anything to add to that question, backing on to you know, what do people probably assume? And what are the million-dollar questions that pop up for parents or loved ones? Do you want to add your thoughts on the questions that popped up for you and what was the most important thing that you want people to know?
Sophie 07:27
I think a lot of people when, like friends, when you go back to school or you tell people what you were diagnosed with, a lot of the time, they just have no idea what it is.
So I think with awareness that would be helpful, not only for other people to know in case it happens to someone they know, but also for the person that happens to, to have support as soon as they know what they’re diagnosed with, rather than having to try to figure it out, kind of by themselves with limited resources.
Megan Gilmour 08:01
Yes, so important, isn’t it? It’s getting the right information at the right time.
Katherine Gill 08:05
Absolutely,
Megan Gilmour 08:06
Yes, that can really address assumptions, and we’ll have another swing back on a similar question to that later. Kate, then Sophie, I think we know one of the answers here, but Kate, we’ll start with you, if you will. We’d love to know what brought you into the world of FND.
Katherine Gill 08:31
So, I’ve also had a lived experience of FND. I developed symptoms in 2013, and at the time, FND wasn’t really known about, then it was misdiagnosed. So, at first, they thought I’d had a stroke, and then sometime later, they’re like, well, it’s not a stroke, but it’s presenting as a stroke, so we’ll treat it as a stroke. And that was actually the wrong thing to do.
It was a couple of years later, after a few more hospital admissions that I was reading my discharge summary and actually found my medical diagnosis in the notes, and I hadn’t been told my diagnosis.
So, I then had to try and make sense of this condition. At that time, there was no publicly accessible information on FND, so I was there going through university databases and journal articles, trying to work out what is this condition.
And I connected with some overseas FND groups and saw a lot of Australians in that group struggling, really struggling. So, I was like, ‘Well, you know, we need to do something about that. We need to do better in Australia.’
So, I established the charity, the only FND charity in Australia, and went across to the first international FND Society Conference. Met a whole lot of professionals over there, and they were saying, Yep, Australia is a black hole for FND.
So really, I wanted to use my lived experience, my research background and my professional experience to bring change in the way that people with FND are treated, the knowledge that’s known about it, knowledge translation and trying to increase access to information and inclusion and support for people with FND.
Megan Gilmour 10:18
From all of us, thank you for that. I’m sure it’s quite a big job for you, but a worthy one, that’s for sure. Sophie, would you like to and it’s not obligatory, but would you like to share what brought you into the world of FND?
Sophie 10:36
Yes, so last year, in 2025 I was just kind of doing year 11, doing what everybody else was doing. And then in April, I woke up just super exhausted, aching legs, and then over the next couple days, kind of lost the use of my legs.
So I went into the hospital, was admitted for around a week and got sent home with them saying it was most likely post-viral, and it would get better on its own, and then it kind of got worse while I was not doing anything about the symptoms.
I got sent by a physio back to a neurologist who diagnosed me pretty quickly and sent me Kate’s website as a resource for that. And then I contacted Kate and was helping with the FND awareness.
Megan Gilmour 11:38
Thank you so much for sharing that, and I guess for both of you, knowing all that you know now, what’s your biggest hope for kids with FND, their families and loved ones when they’re navigating this condition?
Katherine Gill 11:55
I would like them to be given the right information straight away, early diagnosis, early access to care, because a lot of people are not getting – well there’s a delay in diagnosis for a lot of people, and then they’re not getting treatment after they’re being diagnosed.
And then how they’re supported in daily life. So, they need access to early intervention, access to information, and then support to fulfill life roles as much as they can. So yes, I’d like to see support and inclusion.
Megan Gilmour 12:30
Thank you. And Sophie, would you like to add to that?
Sophie 12:33
I think that they should be able to continue school and know that leaving school or doing online learning aren’t their only options, and that a school should be able to accommodate for them to continue as much of schooling as they want to. And then to know that within schools, they should be able to have the individual support to do that.
Megan Gilmour 12:58
Hear-hear. I know we’re going to dig in a little bit deeper to that as we progress through our conversation here, because that’s really dear to my heart, because that’s what I’m here for, and it’s completely possible.
So, what, what are some of the common and perhaps frustrating public misconceptions about FND, and how have you seen this impact families?
Katherine Gill 13:24
So certainly over time, like things are improving, but historically, there’s been a lot of misinformation about FND, and when people google it, they might come across misinformation or health professionals who trained a number of decades ago, might still be applying old treatment ideas and theories.
So, I have seen, especially for children, some children in the past treated quite badly. So, assumptions were made that, basically, they’re malingering, they didn’t want to go to school, they didn’t want to do homework, they didn’t want to do housework, and it was often treated as a behavioral disorder, and parents were told to withhold love, withhold affection, withhold privileges, while the child was symptomatic, and when the child was better, then they could get love, affection and that kind of stuff.
And that’s actually the worst possible thing to do because it increases the stress and the threat response in the body and could absolutely make symptoms worse and the child would feel rejected and unloved. So, the worst possible thing to do.
And even, you know, parents were told, your child’s falling, your child’s seizing, just leave them alone, ignore them. And the mother was like, my child’s about to hit her head on a glass table. I don’t want my child to get injured.
So, a lot of historical models still continue, and they have done a lot of damage in the past and have continued to do some damage moving forward.
There were historical myths around FND. I’ve seen families of a young child, the parent was sent out of the room, and they said, you’ve got this condition because your father sexually abused you. It never happened, and the amount of trauma that that caused for that family when it never happened. At least the child was strong in herself and was able to deny that. But assumptions made like that are really quite damaging to the whole family.
So certainly, things have improved. There’s, you know, over the last few years, six years, I’ve definitely seen things improve, but we still have a long way to go, and yes, we’ve seen attitudes and knowledge change, but there’s still some lingering old historical myths that still play out.
Megan Gilmour 15:58
Thanks for sharing those. It’s always so, so surprising. I have a question. I want to turn to Sophie now to get Sophie’s take on this. Now, I have another question to ask, but I’m really curious about Sophie, what are some of the common and perhaps frustrating misconceptions you’ve encountered in living with FND?
Sophie 16:21
I’ve had similar to what Kate was saying, where people kind of think it’s a behavioral thing. Luckily, I haven’t come across that too much, though.
The main thing I came across – which I wasn’t totally sure whether to believe or not, because I didn’t know, and I was kind of getting my information from people and resources as I went – but I was told that during the functional seizures, I was still somewhat in control, and I was told that I couldn’t fall over and that my brain would let me catch myself if It did happen. Which is not true. I can still have a fall or during a seizure, like, knock my head.
So that kind of misunderstanding can be kind of dangerous in those situations. If people think I’m not going to hurt myself during the seizure.
Katherine Gill 17:19
That is definitely something that came about, is they won’t injure themselves, and even to the point, ‘Oh, they can drive, they won’t injure themselves’. And then research shows otherwise. We have seen a lot of people with injuries, with seizures and worse.
Megan Gilmour 17:37
Yes, so there’s this almost a little bit of denialism about the full brunt of it. And I hear a hint of sort of, almost disbelief in there about the condition. Is that something that’s been, you know,‘ You look fine’ so –
Katherine Gill 17:56
Yes, with the disbelief that’s been a historical thing. So, with FND, there’s a problem with the functioning of the nervous system without structural damage to the nervous system. So, it’s a brain network condition.
And modern-day research with functional MRIs has shown the changes in the brain functioning of someone with FND compared to someone malingering and a healthy control. Whereas, with say Parkinson’s or other conditions where there’s a photo or there’s a blood test that you can see, so we don’t have a photo or a blood test that you can see.
So that’s where we’ve had this thing, you know, malingering, patient blame, that kind of stuff. So that’s where it sort of stemmed from. And modern-day research actually shows what’s happening in the brain of FND, and we’ve got a better understanding of why we’ve got the symptoms, but that knowledge hasn’t translated across all professions and the public.
So that’s why we do have this disbelief – ‘We’ve done a blood test, we’ve done an MRI there’s nothing wrong with you’, but there is sort of positive signs that you need to be trained in to know how to diagnose properly.
Megan Gilmour 19:11
And is it an illness or condition that affects women more than men, girls more than boys? Or it’s both?
Katherine Gill 19:19
Yes. So, we tend to find before puberty, so sort of up to 10 equal number of girls and boys being diagnosed. After about 65 equal male females. And then from puberty to 65 three times more females than males.
Megan Gilmour 19:37
Was that three times you said, yes,
Katherine Gill 19:39
Yes
Megan Gilmour 19:40
Three times more females than males, okay, and would there be – backing on to that a sort of question, is also, does the greater number of women being or experiencing it lead to some sort of medical misogyny as well, in terms of disbelief?
Katherine Gill 20:04
We’ve seen that. We’ve got a research paper, sort of in press, and absolutely when we’ve done research, qualitative research on males versus females, the different kind of experiences and the way that males were treated in care compared to females. So very much so.
Megan Gilmour 20:22
Yes, yes. So that was my question lingering in there, and I suspected that might be the case. It’s also, I mean, for most of the time, largely an invisible illness, I guess, if the seizures or the physical symptoms are not showing – ‘You look fine, therefore you must be okay, or you must be making it up’, could also come into that assessment people make, based on how you look.
So that leads us into the question about how many Australian children and youth are living with FND right now. Do we know this number, Kate?
Katherine Gill 21:04
We don’t have data for Australia, but looking at worldwide data, kids are diagnosed less frequently than adults. We tend to see sort of your teenage years and early 20s, we get a peak incidence of, especially females being diagnosed with functional seizures.
The functional movement disorders tend to be like around 30 to 40. And the numbers out there now is like 79 to 140 per 100,000 so that could equate to up to around 40,000 – 38,000 people in Australia with FND.
We get less numbers in your very young so before your teenage years is quite low, but really that sort of peak in your sort of late teens to early 20s, we see quite a significant rise, especially for your females.
Megan Gilmour 22:06
I often get the answer that we don’t have the data in Australia,
Katherine Gill 22:11
yes, we don’t, yes
Megan Gilmour 22:12
Yes, we are missing a lot of data.
Katherine Gill 22:16
What data we do know is that it is a second most common reason that people seek a neurological consult. So, it is quite common, especially in the neurology field. Some people say it’s rare. It’s not actually rare, it’s just more it’s rarely understood.
Megan Gilmour 22:34
Yes, and maybe more people, or could be misdiagnosis as well, by the sounds of it, like epilepsy or other things yes gets mistaken for until the right pictures are taken, as you say.
Katherine Gill 22:46
Yes, absolutely, yes.
Megan Gilmour 22:51
So, is there a risk of delayed diagnosis, or are most cases eventually picked up easily?
Katherine Gill 22:57
I think we’re getting better at diagnosis, like when I first started the charity, and we did some research, and we had people saying, you know, I’ve gone 14-20 years without a diagnosis. People are tending to be diagnosed faster now, but certainly, like, I wasn’t diagnosed initially, and then I was misdiagnosed, and then I wasn’t told my diagnosis.
There was a period of time where neurologists would hide the diagnosis from patients and families. They’d say, ‘Oh it’s a terrible diagnosis, we can’t treat it anyway, so we just hope that it just goes away, and we don’t want to tell people’.
And then that not having a diagnosis I actually found was worse, because then people are going – I had someone that came to me and said they’ve been in palliative care because they thought that they were so ill they were dying, and now they discovered it’s FND, so they’re not dying, which is great.
But you know, there is a delay, not knowing what you’ve got when you’re very symptomatic, it’s quite scary.
Megan Gilmour 23:56
Yes. And did you say earlier that recovery is possible
Katherine Gill 24:02
For younger people. So definitely, it’s often a condition that you have to manage. So, it might be more remission, but certainly for the younger population, because their brains are neuroplastic until about 25, they’ve got a much greater chance of recovery.
So, the longer you’ve had it, the worse the prognosis. So, the longer you’ve been symptomatic. You know, some people will have, you know, one seizure, and they might be okay. So, by definition, it’s a persistent condition after six months, if you can get in there in the first six months, get the right treatment, get the right support, get the right management plan and not have other comorbidities, you’ve got a much greater chance of improved recovery, wellbeing.
For some people, it will be a long, lasting, permanent condition. They’ve sort of grouped it into about three, so 1/3 get better or manage the condition, 1/3 stay the same, and 1/3 have a progressive, kind of permanent condition.
Megan Gilmour 25:06
Right, yes, thanks for clarifying that. Sophie, would you like to comment on complications that kids may experience with FND.
Sophie 25:15
I know that, like the school work, if you have, if they have an extended period of time off of school and then going back, it can make symptoms worse, because a lot happens at once, or just other people’s reactions, just mentally can be a lot, on, especially children, when they’re like developing friendships and trying to learn new stuff.
I think especially if you’re having visible symptoms, like when I went back, I was still trying to walk properly. I wasn’t walking properly. Since then, I’ve talked to a lot of people who, at the time, would either, to some degree, make fun of it, or were just really confused.
There’s a lot of gossiping that goes around, and I think most children with FND, when they go back, they are aware that’s happening around them, but it’s not happening most of the time to their face, which is, it can be a lot, especially if you don’t have the right friends. Luckily, I did. They were all super supportive, super helpful. But I know that’s not the case for everyone that has to go back to school.
Megan Gilmour 26:31
Yes, and right there in the center of that is that whole thing about going back to school or being out of school, or just the isolation from being out of school while you’re also dealing with – well a rather large change in your life and your body.
So that’s a lot to cope with, as well as, as you say, the social effects that it has when you return to school and you’re different, or people might find you different. Thanks, Sophie.
This one’s for you too. Sophie, if you will. How do siblings and peers cope with FND in terms of having it in their world. So, your siblings and peers, what do you think we should understand about your experience in terms of your siblings, how your siblings took it and your friends, and then your peers? So, some peers are not friends, right? They’re people in your age group or in your school environment.
Sophie 27:47
Yes, I know with my siblings, they were, like everybody else, confused on what it actually was and what it actually meant, and whether it was long term or short term, which varies on the situation and the support you get, like Kate was saying before.
I think also because while I was in hospital, I had my mum with me the whole time, my siblings didn’t see her for a while, which is hard on her and them. So I think that’s probably a hard thing for my siblings, as well as they kind of have to, like the focus at the time, where it was worse for me, the focus of my parents was on me, which is also super hard for siblings, because it means that they kind of have to move around it a little bit.
Megan Gilmour 28:46
You were aware of that too?
Sophie 28:47
Yes, I was aware of it.
Megan Gilmour 28:48
How did it make you feel, that part of it?
Sophie 28:52
It’s not an enjoyable feeling. Just because I feel like they kind of need their parents as well, without a doubt they do. So, I just feel like it’s unintentionally, or not my fault, but it happened anyway. So, it’s kind of taking the help and support from my siblings, solely to me, or mostly to me, for that period of time, which is not a fun feeling to have.
Megan Gilmour 29:24
No, and did it create anxiety for you and your siblings?
Sophie 29:33
I’m not entirely sure about my siblings, because I haven’t heard their kind of perspectives on it, but I could say it probably did, and I know that when my brother knew what I was diagnosed with, I’m pretty sure he went off and did his own research about it as well. So, it probably, definitely did have some sort of worrying effect on them, and it definitely did for me, because I was like, ‘Oh, what’s that? What does that mean? Can I go back to school? That kind of thing.
Megan Gilmour 30:05
And so, your friends and peers at school, you mentioned having a great friendship group, which is really lovely. How did they react to this? And what about kids at school? What were their reactions? You’ve told us some of that already, but if there’s anything else you’d like to share at this point, we would welcome it.
Sophie 30:30
Yes, so most of my friends, I had one friend who had already heard of it, which is great and super helpful. The rest of them, I’m happy to answer questions about it, because the more I talk about it, the more people know about it, and I’d rather them hear it from me, or from a proper resource than kind of do their own research and get all the misunderstandings about it.
So, a lot of them were just like helping me take notes for class, or telling me what we did in class, helping me get around school, carrying my bag.
Outside of school, they were helping just kind of do inclusive stuff that I could do as well, or kind of just adapting to the situation, and especially during my first seizures, they were at school, and I was with some of my friends. They handled it perfectly, and I wouldn’t want to change that. They did really well.
And then people who were outside of my direct friend group, most of them were super supportive as well. Some of them were helping get around school as well. And I know a lot of them were concerned about the seizure when I first had it, and I had a couple people come up to me and just say, ‘Oh, hey, like I heard you had some sort of medical episode. I hope you’re okay.’ And they weren’t interested in knowing what it was, or they were, just wanted to know I was okay. They said you don’t have to go into it if you don’t want, as long as you’re okay, that’s what matters, which is really helpful and good.
Yes, just on the negative side. There were just a few people obviously laughing, talking behind my back, and then a few people who jokingly, I would assume, were just kind of making jokes about the seizure in terms of, ‘Oh, you didn’t have a seizure. Blah, blah, blah, blah, blah’, random stuff like that based on their own opinions or jokes that they were making.
Megan Gilmour 32:33
Interesting the way people deal with their own discomfort, isn’t it? The whole variety of things there. Thank you for sharing that and giving us an insight into your world and what you observed at that time as part of your lived experience.
So, Kate, what’s the current population of school age, children with FND? And how accurate is this?
Katherine Gill 32:58
The data is not available. I mean, my guess is it would be 10 to 20,000 in Australia, and that would be based on overseas research and statistics, not Australian-based data.
So, it is less diagnosed in your very young population. So, you’re really probably mostly looking at your teenagers. I’ve had a five-year-old with it, so we do get it, but it’s just less common in that sort of pre puberty.
Megan Gilmour 33:30
Yes, and whatever the number is, it’s an important number. So, do kids with FND currently miss a lot of school, and if so, why?
Katherine Gill 33:44
Certainly, the children that I’ve worked with have missed a lot, a lot of the time. They’re in hospital. They’re trying to get rehabilitation, they’re trying to work out what, what this is.
Many students do struggle with seizures at school. They struggle with sensory overload, cognitive overload, fatigue, pain. Sitting in a classroom can be too much. Some students will have like a graded return, like Sophie’s been wonderful in getting back, but some kids can’t go back.
So, some kids will choose to do online learning to reduce that sort of overload and manage their sort of sensory needs. But so many kids are in and out of hospital with this condition, and a lot of them can be quite unwell, like, really unwell.
And then, of course, you know, I mentioned, like, we’ve got people who are legally blind, so that impacts their ability to do learning.
And then children with mobility problems, Sophie mentioned her friend helped her get around campus. With kids with mobility problems that can be still really hard trying to physically get to school, manage potentially in a wheelchair.
One of the other big issues that we do see is sometimes kids need a wheelchair, and sometimes they don’t, and we’ve seen teasing happening, so, ‘Oh, you don’t need a wheelchair. I saw you walking the other day. So why do you need a wheelchair now?’.
So, there’s a lot of challenges that kids face, especially with, you know, you can get your variability and symptoms, and some days you might not be able to walk, and other days you can walk.
Megan Gilmour 35:22
I guess even teachers might have those views as well.
Katherine Gill 35:27
Yes, absolutely.
Megan Gilmour 35:28
We hear a lot on these calls that teachers often don’t understand the nature of a chronic health condition, which, in fairness to teachers, there’s a lot of kids in their school, so that’s why we talk about helping educators to know the just in time information they need on a condition, which is why we’re doing these conversations, so that the teaching and learning part of it can happen, and teachers focus on that with the minimal and necessary amount of information on the condition itself.
Katherine Gill 36:07
Yes. The other thing that I’ve seen is some schools are risk averse. So, like Sophie, Sophie wanted to return. I’ve worked with another child that wanted to return to school, and because she was having seizures, the teachers were like ‘Well its distressing for the other children to watch this child have a seizure’, and well it’s distressing for the child to experience a seizure.
I’ve had teachers refuse the child food and water at school in case they choked, and then that child ended up developing anorexia, so that had quite a severe consequence. So, it’s not only the child’s condition that limits their ability to engage in school, but it’s also the school imposing barriers.
So, the school limiting, I think they mentioned to you, Sophie do it part time, so the school limiting how much time you can come to school. And I’ve seen it happen as well, where they can only come to school for one lesson, then they need to go home, or as soon as they’ve had a seizure, they must go home, when, in that case, the child needed to rest for a bit, and could then return to class, but they wouldn’t allow it.
Megan Gilmour 37:18
Yes, they’re really important points. And Sophie, would you like to add to that? Maybe you could take us into your observations and what you know about the condition to speak to what the critical times are in the life of the kid with FND in terms of school life. So, what are the critical times with FND in school life?
Sophie 37:50
I think – mostly this is high school – but for assessment periods, exam blocks, that sort of thing, the pressure is already higher for everybody. But then when you add that to symptoms and seizures and whatever someone with FND is going through, it just kind of doubles, and it can make symptoms worse.
But then on top of that, if you’re not, if there’s not staff that are supportive of it, or peers that are supportive of it, it makes it worse, and that itself can prevent people from going to school with FND, because it can be too much for them to deal with on their own, on top of what everyone else is already dealing with at school.
Megan Gilmour 38:40
Yes, and so I imagine even going between school years might be a pressure or going in and out of school for treatment or sport or extra – well, they’re not even extracurricular – but camps and other things like that, given what Kate said about that.
Katherine Gill 39:02
Yes, and we’ve had when schools allow children to engage in sport, like you mentioned, extra curriculum, things like dance, that sort of stuff. Again, that risk averse, so not getting the same opportunities.
Megan Gilmour 39:17
Yes, yes. Have you experienced that, Sophie?
Sophie 39:19
Yes, so we had a whole grade camp last year. This was, I think, probably a little bit after or before my first seizure. They were already concerned about me going to that, and I had to do self-advocacy to get myself there. The school was pretty supportive of that, though.
Megan Gilmour 39:47
Are you willing to share what that advocacy looked like.
Sophie 39:51
Yes, so they kind of, they were better with understanding for the camp, because I had already, kind of. gone through it with school in general, so they were more willing to understand at that point.
But it was kind of just trying to re-explain what it actually meant, and that I could manage it by myself, and that everything that we were going to be doing, I was capable of doing, and I was capable of knowing when I was too fatigued or too symptomatic to do it, and that there was the option to miss out on certain activities if I felt, to myself, that I couldn’t do that.
Megan Gilmour 40:38
Self-assessment, yes. And was that the same advocacy that you deployed for attending school rather than being doing school online, and by online, I guess you’re meaning some kind of distance education or virtual option that wasn’t into your own school?
Sophie 41:01
Yes, yes. So, the two options I was given, they highly recommended I did a year 13, which was I have six subjects. I do three this year, and anytime I don’t have that subject, I can go home, and then I do the other three the same way the next year?
Megan Gilmour 41:21
Did you do that?
Sophie 41:23
No, because I want to graduate with my friend group. I wanted to – and I knew I was capable of doing that, so I didn’t feel that taking that choice was actually beneficial. And the way it worked was my classes would have still been in a schedule, which means if I had more symptoms in the time I had those classes, that’s not flexible, even though it’s coming across as it being flexible.
Megan Gilmour 41:57
Yes – you can’t predict when that’s going to happen. Yes, I also just love, and I want to point out for the audience here, and we hear this so often, and it’s why we do the work. What Sophie was saying there is she wanted to graduate with her own peer group.
And I think for me, when I hear that, it signals the role that social connection plays and one’s relationship to one’s community and own peers and friends that it’s not just simply the graduation, even in an academic sense, it’s also graduation as a rite of passage, as enjoyed and included in the people who you’ve gone through school with, that makes it important. That’s important to you.
And I think that just tells the story so clearly. If it was simply about completing six subjects, or you can complete six subjects whenever, but it’s not that, it’s a social rite of passage.
Katherine Gill 43:07
And then you’d have to form new social friendship groups in the next year that you’re not connected with at all.
Megan Gilmour 43:16
Well, it loses meaning, is that right Sophie? Is that what you’re saying? It would have felt less meaningful to you and less, maybe not less important. But there was such meaning attached to being able to go through with your own friends and peers.
Sophie 43:30
And it also kind of sucks the joy out of other stuff you get to do in year 12 as well, because it’s kind of like I was told, ‘Oh, you can still go to formal with your grade, and you can also go the year after if you want, but you don’t have to’. Or ‘You can still go to graduation, but you won’t get your certificate and that kind of thing’. So, it’s kind of putting me in a position to observe what I could have had and then not get it, which is just not great.
Megan Gilmour 44:03
And that certificate has to do with both attendance and completion of subjects, doesn’t it.
Sophie 43:30
I believe so, yes.
Megan Gilmour 44:03
Yes. And so, you’ve done some great advocacy, not just by the sounds of it, but actually in terms of outcomes. I’ll move on to the next question, because I think maybe we can pick up a little bit more about what that’s looked like for you.
And I just want to throw in a pitch here for the Disability Standards for Education, which is a national regulation that applies to every school in Australia and enables students with the health condition, so not just what would be seen conceptually or perceptually as a disability, traditionally as a disability, but actually an illness.
The Disability Standards enable students to have an equal opportunity on the same basis as others, in this case, peers, and that means that students can connect to their be able to access their own classrooms, to be able to access the national curriculum, to be able to learn alongside peers, to be able to receive extra support, to be able to receive adjustments that enable that on the same basis as others.
So it’s not providing an advantage, it’s equaling the playing field to enable you to achieve your outcomes, and to get the extra adjustments and things to put you on an equal footing, and enables use of technologies and assistive technologies to do all of that, and of course, freedom from harassment as well, and other safeguards against gatekeeping and segregation.
So, Sophie’s really got in there for herself and done a great job. I’m sure your parents played a part too. But obviously, you know how you feel, and you know what you want, and you’ve been able to make a really great, strong case for that.
So, after that plug for the disability standards, because it’s so important for people to know, what are the biggest challenges and vulnerabilities facing kids with FND at school. Kate, I’ll turn to you now.
Katherine Gill 46:36
I think it’s the inclusion so like this risk averse, obviously, they don’t want the child to have an injury or accident at school, and they’re also quite protective of their teachers and the other children, but we need to include them and maximise their opportunities to engage with the school within their limits.
Like some people, will need a reduced workload, they will need modifications, they might need a different sensory environment. But we are struggling to get there, when you describe that, is because I am still seeing a lot of exclusion and teachers being more concerned about, ‘Oh, it’s too much for the teacher to manage. It’s too much for the other children’, but we’ve also got to think about the person that we’re talking about.
And, you know, kids are often spoken about without them. It’s often a very top-down approach. It’s around listening to the child. And Sophie was very good about advocating for herself and also knowing her limit to what she can do and what she can’t do.
I don’t think kids are given enough credibility to be able to self-assess themselves, like if the kid says I can go back to class, let them go back to class. If the kid says I need to go home after a seizure, let them go home.
So, listening to the child, giving the child a voice, because I’ve worked with really young children. I’ve worked with children with FND from age five. They’re really good at knowing what they can and can’t do, so giving them a voice in the picture as well around how would they like to be treated? How would they like to be included? What is helpful for them?
We want to work with them instead of having conversations about them without them.
Megan Gilmour 48:25
Yes, and that’s such an important message. Sophie, would you like to add anything to what Kate said there about the biggest challenges and vulnerabilities for kids with FND at school?
Sophie 48:38
I think based off of what Kate just said, it doesn’t really matter the age of the child so much, because it’s kind of similar to knowing if you need a drink of water, if you need to go to the bathroom, it’s kind of instinctive whether you need a break or like, when someone without FND gets tired, then know they should rest. It’s the same. It’s just different symptoms.
Megan Gilmour 49:07
So, trusting the person’s experience.
Katherine Gill 49:08
Trusting the young person.
Sophie 49:11
Yes, and I think not giving people with FND in school a voice is the main reason they’re kind of not getting the accommodations they need, being told they have to leave school because they’re having other people who don’t have FND decide what will work best for them, or assuming what will work best for them in their situation.
And, like Kate was saying as well, when kids with FND aren’t involved in the conversations about what will be, what accommodations will be made for them, it does lead to misconception and misunderstanding and not the correct accommodations.
And I know I advocated for myself, and I know I’m capable of doing that, but other people kind of might not know that that is an option, because it’s worded so that it doesn’t sound like you do have an option. It kind of sounds like you can do year 13, or you can do online schooling, those are your options, but it’s not.
You can go back and advocate for yourself and give people a bigger understanding of what it actually means for the individual, because it’s different for everybody. For some people, online schooling might work better, but it’s not the case for everybody. So, it can’t just be used as a big umbrella over everyone in school with FND.
Megan Gilmour 50:51
Yes, well, that’s why we’ve been working to provide two way digital connection to the classroom for students when they can’t physically be there, and it’s not about the reason that we don’t just say go off to online distance education, is the maintenance of the relationship of the person to their own community and their own school, and maintaining that throughout the time that the physical presence can’t be there, not only makes sense, but it’s completely possible to do today, in the 21st Century. We’re here on Zoom. We’re not in the same room.
And we’re not advocating that that would be the 100% full time thing, such as online distance education would be. What we’re saying is, be there physically when you can and join another way, through two-way, digital connection when you can’t physically be there. So, we feel like that’s really an important thing that we want to see.
We want to see our schools modernise to flexible delivery to come into the 21st Century, because there’s a lot of conditions, FND is one of them. We hear so much of the same kind of answers on these calls the conditions different, but the lived experience has so much in common that might feel frustrating, but at the same time, it provides a pathway, right?
If there’s a structural barrier to access to school when you can’t physically attend, and everyone’s experiencing that, how do we address the structural barrier to attendance with virtual connection? So that’s what we come to.
So as we, as we go to our last question, Sophie, what would you say – if you had a big microphone and there was somebody who could solve this, and you could tell them what’s needed, what would you say to them today about FND and how school can work out for kids with FND?
Sophie 53:19
Probably that it needs to be taken seriously, but also the individual needs to be given a voice, because it is different for every single person with FND, it does not look the same for anybody, which means there is not one plan or one solution, but you can’t just umbrella accommodations to everyone with FND in school.
And that the right support and the right amount of support can make finishing school possible, but only if people are willing to listen to the individual and their needs.
Megan Gilmour 54:05
Yes, and make those accommodations that can equal the playing field, right? And that’s probably without knowing about the disability standards or anything else, you just were able to represent your own case in a very compelling way. And I heard you say, not everybody may be able to do that as well.
Katherine Gill 54:29
Yes, yes, it’s wonderful what you did, Sophie, but so many children wouldn’t feel empowered to have that voice. So, I think you just did amazing.
Megan Gilmour 54:40
Yes. And if we look at the complexities around like everything you’ve said here is, sometimes it’s hard to diagnose, sometimes it’s misdiagnosed. Some people don’t know they have it, because sometimes there’s medical misogyny involved.
And each case is different, and sometimes there’s more severe aspects of it, and some people have less. All of that can lead to those misconceptions we talked about earlier and then can lead to the wrong approach at school, and for people with FND at school.
So, it’s been amazing to be able to unpack this with you both. And I’ll just ask you, have we missed anything? Is there anything else that we should be asking about school, quality of life, for FND?
Katherine Gill 55:36
I think I’ll go, and then you go, Sophie, look, school is just so important, like for kids that are not sick, school is really important because it’s the start of your life. You know, getting your learning, getting your peer group, your social communication, that developmental trajectory, developing independence, it’s such a critical time.
And when you’re dealing with an illness or a disability, it adds such a layer of additional challenges. So, we’re never even going to equal the playing field. People with a disability, with FND, whatever it is, they’re coming at this with a disadvantage, you know, trying to work with that person, being client centered, student focused, whatever it is, is really, really important, and listening to them and including them and trying to maximise their participation in schooling.
Because even just missing a week of school, like going off and having surgery, missing a week of school, I found that hard to catch up before I had FND.
So missing schooling is hard enough and then trying to maintain your social group. So, it’s just so important that we work to include whatever condition we’re dealing with, is to support kids with, you know, like you’ve got Sick Kids Seen and Heard, you know, we want to have them included so that they can.
And like Sophie, you getting your year 12. I’ve had high school students that weren’t allowed to return and get the year 12 at school.
Megan Gilmour 57:03
Devastating.
Katherine Gill 57:04
It absolutely is, and it could have had, you know, she was another strong young person and went to TAFE and did it. But for some people, it could really shatter them, and they don’t get back on track.
Not everyone has that resilience to be able to go, okay, school won’t let me do this. School is putting this barrier. I’ll find another way, and especially if you’re younger.
We really want to make sure that kids get this foundational learning and their foundational development and social connectedness, because that’ll set them up for life. We know this is a really pivotal time in a person’s development. So, to be able to get through school with a health condition is just so important for all aspects of life. Yes. Sophie, you go.
Sophie 57:55
The last thing I kind of have to say is more for just like teachers or staff working in education. Just that, a lot of the reason the accommodations or there’s misunderstanding is because the staff don’t know where to start, or they don’t know how to understand it, that sort of thing.
And I think if they don’t know how to handle a situation to do with FND or they don’t understand it, the first place they need to be starting is with the individual that it’s happening to and with, like their family, that sort of thing, because that’s where they’re going to start to figure it out.
Megan Gilmour 58:37
Yes, absolutely. And then, you know, organisations – like the one that we’re talking about here as well, that’s the reason FND Australia exists, right, to give that most accurate of information that’s coming from a clinical research perspective, and can be reliable as a basis as well, and then the individual adjustments, as Sophie’s saying, to be guided by the person experiencing it.
And it’s true, too, that some parents find it very, very hard to advocate at school for students.
Katherine Gill 59:23
Yes, I’ve seen that.
Megan Gilmour 59:25
Yes, and that is, look what it boils down to, if we want to really make it human, is people’s hopes and dreams, people’s hopes and dreams being crushed and their potential.
Katherine Gill 59:38
The lost potential.
Megan Gilmour 59:40
Yes, the lost potential, and it’s actually, as we’ve seen in MissingSchool, it’s absolutely possible for schools to provide this, including a two-way digital connection. And it’s good for the peers. The teacher can teach once, the student can be in the classroom, presencing through a digital technology one day and physically present the next. And it just keeps that smooth – because missed school, as Kate pointed out, just missing it –
Katherine Gill 1:00:13
It’s hard to catch up
Megan Gilmour 1:00:14
It’s incredibly hard to catch up. School keeps moving, and you’re already dealing with so much medically that you’ve got that going on at the same time as the missed school can become incredibly overwhelming for people and they just give up.
And what I like to say as well is, and I can really use Sophie as a great example here, is that we often talk about the help that we give these students, what I like to also reflect on is, what these young people have to give us and our community.
And we see that here with Sophie. If Sophie just sort of dropped out of school and didn’t have the wherewithal or the persistence to advocate for herself, look at what we’d be missing out on.
Katherine Gill 1:01:06
Yes, and Sophie will probably go to university and do amazing things with her life. We don’t want to lose that. And I have then kids not get through school when they could have, with the right adaptations. And, you know, they’ll end up on the DSP, whereas I’m quite sure that Sophie’s going to go really far.
Megan Gilmour 1:01:26
Yes. And this lived experience, Sophie, will also give you things that you never would have had without it. And I’m not saying at all that it’s something that we would want to celebrate. What I’m simply saying is that we don’t get to choose everything that happens in our lives, but hopefully we can choose how we respond to it, and certainly seeing that, and I think it’s really great for our audiences to see the material that our young people are made of and what they have to offer and just perspective.
So, a million cheers for you, Sophie. I also think of all the kids who might not have FND, but your advocacy for yourself might have even helped others. You might not be aware of that but you may have helped teachers to realise things that they might not have seen without your obviously great and respectful and deep conversations to enable them to understand.
Now, as we close, Kate, what’s your call to action in seven words or less for FND?
Katherine Gill 1:02:48
Basically, it’s real. It’s debilitating, but let’s provide support and inclusion.
Megan Gilmour 1:02:54
Brilliant. What about you? Sophie?
Sophie 1:02:59
We’ve already said it a couple times, but just to give the individual their own voice.
Megan Gilmour 1:03:05
Yes, beautiful. What a great way to end. Look, I want to give a shout out both to Kate, or to both Kate and Sophie and to FND Australia Support Services. Thank you both for your role in the community, thank you for what you do for us, and helping us to understand, and being willing to have these conversations, so that others can understand as well.
It’s no mean feat to be out there at the coalface doing this work, so I personally want to acknowledge that, and no one will know, Kate, what you’ve actually done and what it’s taken of you. So, I’d like to shine a light on that. And you Sophie, too, you’re a great advocate and a great example of, just as I said, the fabric of our young people.
So, I want to send everyone over to FNDaus.org.au [http://www.fndaus.org.au], go there. Give generously. Refer this organisation to people you might think need it. Volunteer. Just do whatever Kate wants you to do. Just head over there and give it all. Thank you for joining me today, Kate and Sophie on Live & Learn. It’s been a fabulous conversation.
Katherine Gill 1:04:26
Yes, thanks so much, and thanks for your promotion of this.
Megan Gilmour 1:04:31
Thanks everyone for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, like, share, comment, or leave us a review, because we love hearing from you. And if you want to donate head to missing school.org.au [http://www.missingschool.org.au], because every dollar makes a difference.
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