RECORDED Wed 20 Aug 2025
SUMMARY KEYWORDS Eating disorders, body image, mental health, school connections, Butterfly Foundation, body dissatisfaction, early intervention, treatment, stigma, peer influence, social media, prevention education, Disability Standards for Education, youth voice, body kindness.
SPEAKERS: Megan Gilmour, Helen Bird
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.
Megan Gilmour 00:43
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.
And today on Live & Learn we have Helen Bird. Helen brings over 30 years of experience in education services and health promotion programs with a background across government and health sectors. She is dedicated to raising awareness and expanding the impact of Butterfly Foundation, Australia’s national charity for eating disorders and body image issues.
Helen oversees Butterfly’s community education programs and the body kind initiative, providing resources and activities in youth settings and to promote positive body image and encourage kindness towards all bodies. Welcome, Helen. We’re so excited to have you on Live and Learn.
Helen Bird 01:42
Thank you so much. Megan,
Megan Gilmour 01:44
Yes, so today we’re here to talk about supporting school connections for students with complex medical or mental health conditions. So, let’s jump straight into the first question.
Helen, tell us how eating disorders impact kids and why it’s something every Australian needs to know and care about.
Helen Bird 02:03
Yes, absolutely. Every Australian needs to know and understand about eating disorders. They’re really serious mental illnesses with physical complications too. They’re very misunderstood. They’re probably more common than most people think.
We have around 1.1 million Australians living with an eating disorder right now, and they are impacting our young people in a really significant way.
So, we know that there has been a massive increase in eating disorder presentations in young people, 86% in 10- to 19-year-olds since 2012. So, it’s really an issue that we really need to get our heads around and take decisive action.
Megan Gilmour 02:47
Well, what an opening. That certainly is something in those stats are alarming, and it sounds like it’s a condition that’s on the rise with modern life, given the increase – 86% I think you said, was that right, since 2012?
Helen Bird 03:07
Yes,
Megan Gilmour 03:08
Wow. Let’s get into that a little bit later, there’s more room for us to talk about that stat. So many people probably assume things about eating disorders. What’s the million-dollar question that you get from parents or loved ones when their child experiences or is diagnosed with an eating disorder or disorders?
Helen Bird 03:33
Yes, I mean, every family, every eating disorder experience is different, but I think a couple of the common ones are, where did we go wrong? And there is that sense of, ‘am I to blame in some way? Have I failed as a parent?’
And eating disorders are incredibly complex in the way that they develop, so it’s not that we can pinpoint our finger on one thing, one parenting style, one action that’s caused an eating disorder. So that’s really important for parents and families to recognise.
Another really big question is, ‘How did I not see this coming?’ And eating disorders are clever, and they can often hide in plain sight, until they become very apparent. So, the eating disorder behaviors are really the tip of the iceberg, and it’s all the stuff that’s going on underneath that can often be quite hidden.
And unfortunately, some of those eating disorder type behaviors are actually praised and normalised in our society. So, parents can often kind of think, ‘Oh, great, my, my child’s on a health kick. They’re really becoming very health conscious. They’re starting to look after themselves. Oh, great. They’re spending a lot of time in the gym’. Or they’re getting very focused, hyper focused, on their schoolwork, and then, like, really getting stuck into it.
So it can often be dismissed as just normal, normal behaviors in our modern day, diet, culture focused society and also just missed in terms of, you know, normal teenage behavior, so increased moodiness, or, you know, not wanting to eat family meals and going off to the bedroom and eating alone, those kinds of things.
So, yes, it can be that kind of like, how did this creep up on us? And I suppose what we really want parents to know is that the most important thing now is that if there is an eating disorder diagnosis, or eating disorder suspected, that you take the steps to kind of get the support that you need, and really focus on supporting that treatment and recovery journey, that’s really the goal at that point.
Megan Gilmour 05:51
Yes, so you’ve you answered my next question there was that that most important thing that you want them to know sounds like we have families, parents blaming themselves for either doing something wrong or missing it, and that important thing is it’s happening, and it’s time to get the support. And there is support there.
So, what we’d love to know, if you’re happy to share, what brought you into the world of eating disorders?
Helen Bird 06:27
Well, I’m, unlike a lot of my colleagues at Butterfly, I don’t actually come to this work with a lived experience. My background, as you said, is in health promotion, and I’ve done a lot of work, mainly in the UK, around UK-based school health promotion activities, school wellbeing.
And I suppose I’m just really, my passion is around helping young people, empowering them around all aspects of their health and wellbeing. And this, you know, my work at Butterfly is very much focused on that healthy relationship with the body, eating and exercise.
And I’ve been at Butterfly for over 11 years now, and I’m so incredibly proud to be a part of this organisation, particularly our team and all the work that we’re doing out there in the community. And I think what keeps me at Butterfly is that just that absolute feeling of necessity that we need to kind of create a better environment for our young people to be growing up in, and that they deserve, they deserve better than what they have at the minute.
And it’s one of those roles and one of those organisations where you get that direct feedback. So we, we have young people that reach out to us, you know, three or four years, five years after a student presentation that we’ve delivered in their school, and they reach out and say that they still remember that conversation that they had with Butterfly, or that it was instrumental in helping them reach out and support a friend, or even their own recovery. So, it’s, it’s, it’s delightful work, and I just love Butterfly.
Megan Gilmour 08:03
Well, here, here, and thank you so much to you and Butterfly Foundation for the work that you do, that I agree is so essential, and the way that you talked about it in terms of being work that children deserve, or that the world that we’re trying to take them towards is better than the one that they have now. I couldn’t agree more with that.
Helen Bird 08:33
Yes, it’s such an incredibly challenging environment and well, for young people to be growing up in, and it’s, you know, that diet culture fueled society that’s perpetuated through social media. It’s incredibly challenging, particularly don’t you think yes, right now.
Megan Gilmour 08:51
Yes, but I think boys are also facing that, I’m sure, and I hope we get into that, yes, yes.
Knowing all that you know, what’s your biggest hope for kids with eating disorders, their families and loved ones when navigating this condition?
Helen Bird 09:09
Well, my biggest hope for the young person is that, obviously, that they can live free of their eating disorder, that they can live a full and fulfilling life, and that they treat themselves with kindness and self-compassion.
And in terms of families, I suppose it’s that they have hope, that they know eating disorders are treatable and that recovery is possible, but it does require a bit of patience and persistence, because, like a lot of things, the journey to recovery isn’t necessarily linear, like it’s one step forward, three steps back, two steps forward, and it requires perseverance.
But we get to speak to a lot of people at Butterfly with lived experience, and I think they would all say that that journey, however difficult it might be, is definitely worth it.
Megan Gilmour 10:08
Yes, I’m sure they come out of it with so much knowledge and awareness and a different perspective on life.
Helen Bird 10:19
Yes, yes. They are – all of my colleagues that had lived experiences are so insightful, so inspiring, and just bring such a like, a unique perspective to the world and to this work.
Megan Gilmour 10:33
Yes, and there’s some, as you pointed out, there’s some systems, things that this lived experience can really speak to.
What are some of the common and perhaps frustrating public misconceptions about eating disorders and how have you seen this impact kids and families?
Helen Bird 10:59
Yes, well, there’s lots, as you would expect. And I think Butterfly conducts community insight research to sort of test where we’re going with those misconceptions and misunderstanding. And there is still that belief that eating disorders are somehow a lifestyle choice to some extent, and that they affect, they’re about vanity, and that they really principally affect young white females.
And another big conception is that you can just tell by looking at somebody whether they’ve got an eating disorder, because it’s that very stereotypical presentation of some of anorexia nervosa, of somebody with a very low body weight.
And all of that is incorrect, and we actually know that anorexia nervosa actually only compromises about 3% of eating disorder diagnosis, and actually there is atypical anorexia nervosa – a person can be within “normal” too, in a larger body and still be having those eating disorders, thoughts and cognitions, and still very unwell.
And the problem with all of those misconceptions and stereotypes is it actually delays people reaching out for help. They don’t feel like they maybe even have an eating disorder, or if they do, that they’re not sick enough, that they’re not in a low weight enough, and yes, really delays that seeking treatment.
And we know that that actually is the most important thing. So, the earlier that we intervene, then the stronger the likelihood of a quicker and more successful recovery. So, it’s really important that people do reach out and we overcome all of that, that stigma and barriers to help seeking, that the eating disorder presents.
Megan Gilmour 12:48
Yes, and I’m going to ask a couple of questions about, well, one question, and then I’d like to head into diagnosis, like, what does it look like. Because in many ways, I’m hearing that it’s a hidden illness, an invisible illness, to a large extent, and I don’t even know that it’s appropriate for me to call it an illness. Perhaps I should be saying disorder instead or condition. What’s the language there?
Helen Bird 13:18
I would say mental illness.
Megan Gilmour 13:21
Okay, that’s important. Language is important. How many kids and or children and young people are living with eating disorders right now?
Helen Bird 13:32
Yes, I mean, that’s difficult because we don’t have great data. Butterfly, as I said, did two pieces of research back in 2012 and then we re-did that work in 2023 to try and get an understanding of the prevalence of eating disorders in Australia, and also the economic and social impact of them, which is massive, as you might expect.
And so, it’s estimated that 1.1 million Australians are currently living with an eating disorder, and about 27% of those are between the ages of 10 to 19.
But outside of that, we know that there are many millions of young people sitting in our world, in our schools, in our families, experiencing body dissatisfaction, and we know that body dissatisfaction is a risk factor, because it can lead to that desire to want to change our bodies, and that often for our girls, means shrinking our bodies, making them smaller, and our boys focusing on leanness and muscularity, and that can lead to a disordered relationship with eating and physical activity, which is a significant risk factor for an eating disorder?
Megan Gilmour 14:41
Yes. So, this question ties pretty neatly into that, I think. Is there a risk of delayed diagnosis, or are most cases of eating disorder picked up easily?
Helen Bird 14:55
Well, we know that around 1/3 of people never seek treatment or help for their eating disorder. So, there’s a lot of people out there that are not getting the support that they deserve.
Yes, eating disorders can be missed or misdiagnosed for months and even years and again, that early intervention message is so important in terms of reducing the severity and length of an illness.
And eating disorders per se are clever at telling a person that they either are not deserving of help and support, that they are not sick enough, and for many people that eating disorder mindset may actually drive people to want to hold on to those eating disorder behaviors because they serve a real purpose in their life, in terms of making them feel safe or in control.
So, you’ve got all these things, as well as you know, still some misunderstanding amongst health professionals around eating disorder diagnosis. And again, that idea that the weight is the determining factor.
So, it’s all of those factors together which really do lead to that delayed diagnosis. But yes, the earlier the better.
Megan Gilmour 16:13
Yes, early intervention, it makes sense, and I think it’ll help our listeners even more if you share with us some of the symptoms or ways that eating disorders present, including that complexity around perhaps unlike other conditions or illnesses, mental illnesses, where the person actually wants to maintain that for a certain reason, wants to have that control, or, yes, we’d love to understand more about how, how one would view the world, in order to understand what’s happening for a person.
Helen Bird 17:00
So, there are a range of physical, behavioral, psychological warning signs. And again, it’s really complex, because they present differently in different combinations. So, it’s not necessarily that there is a tick box that you can kind of complete, although there are screening tools.
So, I think as a parent or a teacher, you might start noticing a young person really vocalising dissatisfaction with their body. You might see them engaging in a lot of body checking, checking on their reflections, being not being able to kind of – taking a long time to get ready, and not being able to go out and withdraw from their kind of social situations, because they just don’t feel comfortable in their body.
You might see kind of changes in their weight so that could be both weight gain and weight loss, so sort of rapid changes, which, again, when we’re talking about adolescence, is really difficult, because many of them are going through puberty, so you would expect changes in weight.
You might see frequent trips to the bathroom after eating. You might see a lot of interest in food preparation, what’s been cooked in the kitchen, checking what’s going in into recipes, suggesting ways that they could be sort of ‘healthified’.
You might see not wanting to eat in front of others. You might see physical signs, such as, you know, often being very cold, you know, increasing in body hair, a whole range of different warning signs, including different combinations for different people.
Megan Gilmour 18:41
Yes, thank you. That’s helpful to for us to understand more. And what kind of complications then do kids with eating disorders experience?
Helen Bird 18:52
Well, we can see it definitely has an impact on growth and development. It can interrupt puberty or delay puberty. And we see, you know, loss of menstruation in girls.
It can cause heart problems, digestive issues, and you know, more enduring eating disorders can lead to that malnutrition, which leads to issues with bone density, infertility and even changes to the brain.
And then you’ve got the cognitive impairment in terms of ability to kind of focus – memory, those kinds of things. And we also know that eating disorders often present alongside anxiety, depression, obsessive compulsive disorder and suicide and increased suicidal thoughts.
Megan Gilmour 19:41
Yes, it’s, it sounds like a very complex, as you identified, a very complex situation there for many, many people. What does it look like in terms of – well – how are siblings and peers of kids with eating disorders impacted. What should we or families be across?
Helen Bird 20:04
I think it’s probably, any of your guests on your previous podcasts would have definitely said that it’s not, it doesn’t just impact the individual. It has a significant impact on the whole family.
And many parents talk about it as almost as if it’s a grieving process. They’re grieving to some extent, the loss of their normal family life, and they’re also grieving the loss of their child in the sense that the eating disorder sort of overtakes their child’s personality.
And for siblings, brothers and sisters, again, it can be that feelings of guilt, you know? Why has this happened? And have I contributed in some way, anxiety about what’s going on in the family. And sometimes I can just feel a bit sort of pushed out in the sense that there’s so much energy, and quite rightly so, to support the sibling that is impacted. I think the most important thing is really helping siblings and the peer group to really understand the eating disorder mindset.
And when we talk to young people in the in the upper age ranges at school in year 11 and 12, we’re talking about eating disorders. We talk about the eating disorders and the eating disorder mindset, and we compare it to living with that, that analogy of living with an inner bully, so that that relentless voice in your head or on your shoulder telling you that you’re not good enough.
And I think growing that understanding, giving siblings and peers hope that you know that your friend or your brother or sister well they will recover. Things will go back to normal. Please try and just carry on. Invite them to the things that you would be inviting them to normally. They might not show up. They might not be able to participate, but keep being a good friend, brother, sister, mate to them, and in time, things will get better.
So, it’s that kind of holding on to hope for everybody in the family and everyone in that kind of immediate group support.
Megan Gilmour 22:11
Yes. Is there any evidence to show that – because we were sort of heading into the school conversation now, more specifically – is there any evidence to show that where one student in a class or school or a peer group develops an eating disorder that that can have a spiraling effect for others, other young people?
Helen Bird 22:42
Yes, so eating disorders aren’t contagious. They’re not a contagious illness, but we can definitely see that friendship groups or individuals might start mimicking those behaviors, and we often hear from schools that idea of groups of students kind of getting into health kicks together and supporting each other to be the healthiest version of themselves.
And the problem with that is that it can get quite competitive. And of course, teenagers are naturally in that stage of development where they’re going to compare themselves to others. And so, we can see that’s kind of happening sometimes within friendship groups, peer groups.
And that’s why it’s important, I think, that we provide that broad based education, not only about increasing understanding of eating disorders and reducing the stigma around who’s impacted and why and the importance of help seeking, but also just broadly providing that general, broad based prevention education, universal education in schools, which is all about, you know, supporting those giving them strategies, really, to kind of push back against all the pressures that they’re experiencing, develop a bit of resilience, and to have some tools up their sleeves in terms of being able to kind of have a kinder, more positive relationship with their body.
Megan Gilmour 24:02
All good things there. Yes, it’s unsurprising what you’re saying. It’s just why I asked the question. And you can see how, you know, particularly with social media, you know, propagating messages faster than more readily than at any other time in history.
And those societal messages and expectations around perfection and the idyllic life of a beautiful influencer, be it a woman or a man or, you know, transgender person. It doesn’t really matter who that object is.
Helen Bird 24:45
Everyone is exposed to those ideals, and the sub ideals for different sorts of demographics. And you know, it’s the speed at which those, that information, misinformation, the trends, the speed at which that perpetuates is just unbelievable, really.
And again, we talk about the fact that, you know, on social media that eating disorder – that really pro eating disorder content that used to be hidden away in in chat rooms, and it was a bit kind of like, you know, harder to find. It’s now kind of like out there in the mainstream under these various kinds of trends and clean eating trends.
Megan Gilmour 25:25
And attracting some legitimacy, some kind of legitimacy.
Helen Bird 25:28
Yes so, it’s really brought to the fore, and it’s really hard for young people to distinguish between what is helpful versus harmful information.
Megan Gilmour 25:38
Yes, for sure, and what is true also,
Helen Bird 25:41
Yes, yes. And even if it’s not true, or even if they know that something’s been filtered or manipulated in some way, it still doesn’t take necessarily away the desire or the upward comparison, even when they know, and it’s almost we’ve got to the point in our kind of social media feeds where it’s not about – it’s actually trying to find the stuff that’s real, because there’s just so much content now that, is it fake or misinformation? It’s actually we’re getting to the point now where is the real stuff?
Megan Gilmour 26:15
Yes, and, and so much more complex in terms of, you know, distilling the truth out of things, and what people’s different goals are for that content as well.
Helen Bird 26:28
Yes, we talk a lot about that in our school sessions, really trying to get that media literacy element in, to really understand whose computer created this piece of content. What’s the purpose behind that? What message is it giving? Who is that message targeted at? How do they want to make us feel and what do they want us to do?
And usually, it’s like we want you to feel bad so that you will buy something, do something, engage in something, follow somebody for further information, advice. So that critical thinking skills has been big piece of work for us over the last 18 months.
Megan Gilmour 27:06
Yes, indeed. And even in the more you know outside of the digital world, you mentioned peer groups and health goals and things like that, and also the insidious nature of an eating disorder and all of those things that go with that.
You could have five people in a group, all of them with health goals, but one, one person battling an eating disorder and not disclosing it really, or sharing what’s actually going on for them, so they could look like they’re winning at goal level, and actually, you know – so it’s that level of truth even,
Helen Bird 27:50
and that’s why we have to be so careful, really, when we’re sort of commenting on people’s appearance or the way that they’re eating or the way that they’re exercising, we actually don’t know whether we’re actually endorsing really harmful behaviors, because we don’t truly know what’s going on behind the scenes for everybody.
And that’s the thing with eating disorders. It’s a lot of it is below the surface in terms of the cognitions and the thoughts and the beliefs, yes, then there’s the physical manifestation.
Megan Gilmour 28:22
And would you say or is it fair to say that it’s such a gripping disorder, given that eating is not only an essential part of being a human for survival, but it’s something that we’re doing or thinking about all the time.
Helen Bird 28:47
Yes, yes. And, I think the one thing that really stuck with me, I think I can’t remember who shared this, and obviously somebody with the lived experience, but they sort of said, when you’re in the grips of an eating disorder, food is fear, and eating is like being asked to jump out of the plane when you’re scared of heights, and you’re being asked to do that when you’re in that kind of needing to be re-fed and, you know, regaining weight, you need to be doing that five or six times a day.
Megan Gilmour 29:25
Yes
Helen Bird 29:26
And yes, can you imagine if you had a had a phobia? I’ve got a phobia of spiders. If somebody said to me, I had to stroke spiders six times a day, it would just be literally terrifying.
Megan Gilmour 29:35
Yes, yes. The amygdala is dialed up. The fear is real. It’s dialed up and for something that is actually life-giving, which makes it very complex and paradoxical, and I guess part of the reason many people might not understand, and they might think people are doing it to get attention, and all those other misconceptions that we talked about.
Helen Bird 30:02
Yes, and it’s why they require kind of a broad-based treatment, both for the physical health and also for the psychological aspects as well. So yes, it requires that kind of multidisciplinary approach.
Megan Gilmour 30:18
Yes. Very hard to make someone eat when they can’t. I also draw the analogy from when my son was critically ill, which is the reason I started MissingSchool.
But where he developed an eating disorder within the midst of his other things that were going on, because he had such incredible nausea given his treatment, and he was losing so much weight because he just couldn’t eat.
And every day the doctors would come in and everybody, all we focused on was, what would you like to eat? And if he’d say one thing, we’d be running off to get it, and then he wouldn’t want it when we came back and I used to try to make people understand – imagine the last time that you were just so nauseated you couldn’t even tolerate water, and then people were trying to get you to eat food.
It’s similar when you said about the fear, it made me think of that, because it’s almost impossible, for that person.
Helen Bird 31:34
Yes.
Megan Gilmour 31:35
So, I think that’s probably something for people to think about. It’s, in a way, it doesn’t become a choice when that process is going on for that person.
Helen Bird 31:48
It’s why we need to have so much compassion and reduce the stigma and shame that so many people feel if they’re experiencing an eating disorder.
Megan Gilmour 31:59
Yes, and the only control just about that a young person can exert is what they put in their mouth, if you really kind of take the broad brush. In some situations, that’s the only thing they have control over.
Helen Bird 32:18
Yes. I mean, eating disorders are about, you know, it is about food, but it’s actually somebody trying to cope with very difficult feelings, however that’s come about, whether that’s some sort of trauma, or a difficult relationship with the body, or they’ve been teased or bullied, or whatever it is. It’s about trying to manage difficult emotions. And food becomes the vehicle for that, but it’s the difficult emotions is the bit that we need to really help.
Megan Gilmour 32:51
Yes, and those emotions are being carried around in the body, and so it’s all about the body, isn’t it? You know, you can kind of see how this pathway emerges.
Well, we talked about data earlier, and you mentioned that it’s difficult. We don’t have exact numbers, and that doesn’t even include people who aren’t disclosing or haven’t been diagnosed.
Do we have any idea of what the current population of school aged children is with these eating disorders and how accurate is it? Is it tracked, for example?
Helen Bird 33:34
So, the best available data that I had in my head is that 1.1 million, and it’s 27% of those under the age of 19. So, 27% of 1.1 million, we might perhaps –
Megan Gilmour 33:48
Grab a calculator, yes, [laughter]
Helen Bird 33:49
Yes, yes. [laughter] I should have had that to hand. But it’s that 27% are under 19
Megan Gilmour 33:58
That’s about close enough to 300,000
Helen Bird 34:02
Yes, to me, that sounds huge,
Megan Gilmour 34:07
Yes, and the student population is 4 million. So, if my maths is right by the calculator, 7%. So, would that be right? So, we said 300,000 say, divided by four million is 7.5%.
300,000 school students is a lot of kids.
Helen Bird 34:40
Yes, it is, and yes, it is. Predominantly we know eating disorders particularly impact young females or females, women of all ages, actually, people of all ages, all genders, all ethnicities, all socio-economic backgrounds. But we do know women are disproportionately impacted.
But that’s not to say that boys and gender diverse young people in particular don’t also experience eating disorders, and we definitely need to be mindful of that, particularly within our schools and in our homes, that we’re actually paying attention to those behaviors in boys and gender diverse young people too.
Megan Gilmour 35:20
Yes, very important points – a gendered agenda issue, but also a widespread issue,
Helen Bird 35:26
Yes, and because of that misconception that it is a female illness, we know that boys are less likely to come forward, less likely to associate their symptoms with an eating disorder, so that we can expect that there’s a kind of under representation of males in the data, for sure.
Megan Gilmour 35:48
Yes, that’s a really important point, and I always like to add in here, when we’re talking about data, is that that’s not the only thing necessarily going on in the young person’s life, either, you know: They could be living in rural or remote areas; they could be experiencing socio economic struggles; they could be experiencing gender identity issues, yes, so many different things that could be going on,
Helen Bird 36:14
a lot of intersectionality,
Megan Gilmour 36:16
Yes, absolutely. It’s a Venn diagram, but it’s important, right? Because it’s important that we recognise the complexity of young people’s lives as humans.
Because it gets us thinking about the other kinds of things that could be going on for these young people and what might be contributing to this or causing it, or the way that it might be used to try and make some sense of the world or exert some control over one’s life.
Now this is an interesting question. Do kids with eating disorders currently miss a lot of school, and if they do, why?
Helen Bird 37:01
Well, you would probably expect that somebody that was in treatment for an eating disorder – we know not everybody is – but when they’re in treatment for eating disorder, it’s likely to involve a lot of medical appointments, and for some obviously a period of, you know, it may include a period of hospitalisation.
So, we do a lot of work with educators, really about helping to support the transition of young people with eating disorders who have been hospitalised back into school life and just making those accommodations for the kids.
So, thinking about whether there’s different curriculum choices that need to be made, whether how they participate in physical activity, and doing that in consultation really closely with parents, the student themselves, and obviously any treatment providers.
I think sometimes schools can feel under a lot of pressure in terms of providing sort of like gold standard care for somebody with an eating disorder. And you know, we reassure educators that it’s not their role to support treatment, per se, that’s for the treatment providers, but their role really is to kind of support the child’s engagement with their learning, their engagement back into school and social life.
And the parents getting a child back into school is a key way of feeling like their life is getting back to normal. And sometimes parents can be a little bit wanting to push that earlier than it should necessarily happen. So, schools need to be aware of that and make sure that a child is well enough to be coping in that school environment.
Megan Gilmour 38:43
And would you have a sense of what proportion of young people would be missing school, often or even for long periods?
Helen Bird 38:52
Do you know? I don’t have that kind of school attendance data at all in terms of eating disorders. In our body kind youth survey, we did ask questions around the impact of body dissatisfaction on school attendance, and something like one in five that said that the way they felt about their body had stopped them from attending, you know, had frequently stopped them from attending school.
And around a third, I think around half actually sorry, around a half were saying that it impacted their ability to focus at school and put their hand up in class. So that’s body dissatisfaction, so you can imagine the impacts of a young person with an eating disorder. They might physically be there, but that mentally they’re dealing with such a lot, and they might not be completely checked into that learning process.
Megan Gilmour 39:43
Yes, thank you for drawing out that data. It does shine a light on the fact that we could be seeing a lot of children missing school for long periods.
And it doesn’t surprise me that you can’t put your finger right on that data, because in Australia, in many countries, actually, we don’t have data on how many or how much school is missed due to a health condition, and it’s something that MissingSchool’s actually working on with the government, is to try and have our school attendance metrics factor this in.
Because often, and I suspect based on what you’ve said, in many cases, there is not a diagnosis, but there may be symptomology that causes missing school, and I’ll comment on that in a moment, but there’s also, if a student did have a diagnosis and was allowed to be away from – I use allowed loosely here, allowed to be away from school, then they would get categorised in the same category as common cold.
Helen Bird 41:03
Oh, okay, oh wow
Megan Gilmour 41:05
So, the data is hidden in that and then, I’m sure you want to comment on this, our children with eating disorders, who do miss school without a diagnosis. Are they tarnished with the brush of, you’re being difficult,
Helen Bird 41:29
School refuser
Megan Gilmour 41:30
yes, school refusal, maybe not even emotionally based, school avoidance, but you’re just, you’re just squibbing off school, you know? And you shouldn’t be. And I’m, I’m going to hypothesise that that is the case, and that would be happening quite a lot in this circumstance, given what you’re sharing with us.
Helen Bird 41:49
Yes, possibly, yes. Again, I don’t have hard and fast kind of data, and I haven’t had many discussions with teachers around that point, but it does sound like it, yes, can be really hidden
Megan Gilmour 42:03
Yes, and not seen as a legitimate reason. So, I would suspect too that it would take a long time for doctors to diagnose this too, in many cases,
Helen Bird 42:16
I think it definitely depends on the GP, and I think that’s something we’ve worked quite hard on at Butterfly and with our colleagues at the National Eating Disorder collaboration, in terms of their work, particularly in trying to skill up that kind of primary health care professional so that they are eating disorder aware and do think to ask the right questions and don’t necessarily dismiss things immediately.
Megan Gilmour 42:46
I’m guessing young people might not want this disclosed to their school either, in some cases,
Helen Bird 42:52
Yes, and obviously everyone has a has a right to privacy. But I suppose, again, if a child was experiencing maybe cancer diagnosis or another mental health condition, would there be the same reluctance to want to share that with school?
Megan Gilmour 43:13
Yes, yes. Cancer’s an interesting one, because there’s so much physicality to it as well. But we do hear a lot that, particularly in the teenage years, even where it’s a lifelong condition, and the primary school knew and all of that.
So, we do hear, to do with other conditions that even children who have that condition in primary school and happy for it to be disclosed, as soon as they get to the teenage years, they don’t want anyone to know. And that gets quite complicated, yes, so I wondered if that was also the case here.
Helen Bird 43:58
Yes. I mean, we talked to schools again, educators, in our own professional development that we offer, you know about asking children and families how they want their absence explained to their peers, and that’s for them to decide.
And it might be that they just want to say they have they’re having a difficult time with eating when they’re, you know, getting treatment, and they’re doing well now. Thank you very much. I mean, it just depends, and other people might find it helpful and supportive, but I think everybody’s different, and the choice should be theirs.
But for me, you know, schools can make the accommodations if they know. So, we know that a child returning, you know, on an eating disorder treatment plan, they need to eat particular amounts of food at regular intervals, and that they need to be given the space and time to do that within the school environment.
And so that might be, you know, private space or schools supervising the child eating, not necessarily taking part in encouraging them to eat or cajoling to them to eat, but just being there as an observer and saying, yes, this student did turn up. And they did take their had their recess with them, and they did eat this, and they were escorted back to classroom, and they didn’t go by the toilets.
Megan Gilmour 45:20
Yes,
Helen Bird 45:21
Yes. So, if schools know, then they can support and you know, we do know many schools want to do the best that they can with the resources that they have and the capacity that they have and the skill set of their staff as well. So, all of those factors, yes blend into whether you know what support schools can offer.
Megan Gilmour 45:39
Yes, and that’s a great one to head into our next question and also just to acknowledge what you’re saying there about, you know, the right to choose, but also the work that you do is to destigmatise as well, and to make sure that not only the whole family, but also, you know that as many classrooms as possible around the country have and kids have that understanding of themselves, their own body, their own experiences, and to be able to then, therefore, have empathy towards others and understand to make those places safer.
And you talked about adjustments, which is exactly where we’re heading now, which was, what are the critical times in school life for a kid with eating disorder or eating disorders and what should families and schools be prepared for at different times in this case?
Helen Bird 46:38
I probably might not be answering me this in quite the way that you phrased it, but I think I thought of it in terms of key times in the life of a child when there might be a particular risk of an eating disorder, and that in terms of the school cycle.
And so, we know that transition from primary to secondary can be a key time. We know the transition from secondary to tertiary. So that tertiary environment kids may be moving away from their homes. They’ve probably got less scrutiny, more choice around their food options and their food choices. They might be away from their initial treatment providers or whatever.
So, we know that they can be kind of key times when an eating disorder might be triggered or exacerbated. Exam time. You know the pressure from exams, the period leading up to formals can be particularly stressful for all young people, not just those experiencing eating disorders. Unfortunately, we know the pressure around formal time. Yes, it can really kind of fuel those insecurities and those comparisons.
And also, when kids go away on school camps.
Megan Gilmour 47:49
I was thinking about that too,
Helen Bird 47:51
And it’s not necessarily again, it’s about being away from maybe the scrutiny of the family or the parent who’s providing the food. But it’s also a time when school staff particularly notice and pick up on eating disorder behaviors.
We often do training for school teams who are accompanying kids on extended travel overseas, and they want to be skilled up in the kind of yes warning signs, and how do we respond and manage this situation if it’s occurring whilst we’re away.
Megan Gilmour 48:25
Yes. And as you mentioned transitions in and out of treatment too. So, when children are away and they’re coming back into school, you mentioned that earlier, so I’ll just throw that one in there as well. These ins and outs of eras and places and times and pressures,
Helen Bird 48:45
Yes, and the most important thing, really, in all of that is helping the young person stay engaged with their treatment. So that’s, it doesn’t mean to say that school staff are providing therapy or therapeutic support or being part, necessarily, part of that treatment, but they’re helping the young person stay engaged in their treatment by allowing or, you know, making space for those appointments.
And that they’re really helping them to stay as best that they can engage in their learning and in their social relationships, so that they can, you know that, so they don’t feel like they’re missing out.
Megan Gilmour 49:22
Yes, so they have that anchor, and this is the point in the conversation where I always mention the Disability Standards for Education, because that’s the national regulation that every school needs to observe, and it does cover eating disorders, if you take the reading of that.
And that’s the modality through which schools can make these different accommodations that we’re talking about as well, and indeed be funded to do so, which is also critical to know.
So that’s how schools can get those additional supports when they’re making adjustments in an Individual Learning Plan. And so, we would say that you know students and families who are aware of the presence of an eating disorder and need for those adjustments.
And you mentioned a few of those adjustments which are so important, which is being able to have a place to eat, being able to eat regularly, having the support of somebody with you when that’s taking place. Those are adjustments would be covered and are covered by the Disability Standards, and that’s how they’re enabled.
And it also, importantly, covers access to the school. You know, if the situation was severe enough, a school can’t, sort of say, well, you’re not coming, so we’ll kick you out.
Helen Bird 50:58
okay, yes,
Megan Gilmour 50:59
You know those sorts of things. And learning alongside peers, not being segregated for any reason to have assistive devices if you need them. So that’s where our work comes in to sort of give that two-way digital connection into classrooms from any other place of care.
And I’d say that this case eating disorders is probably a really tricky one, once again, for students wanting to actually use a two-way digital connection into the classroom if they don’t want to be in the classroom and don’t want to be seen.
So, but it’s always worth mentioning that we keep finding ways to modernise and give greater flexibility to students to be able to participate in ways that support them, And I’m avoiding the use of the term healthy ways, because it’s a bit,
Helen Bird 52:03
isn’t it? Yes,
Megan Gilmour 52:04
loaded in this conversation. It’s possibly, I’m thinking, used also as a way to mask the eating disorder, which is, this is a category that is good and accepted by everyone. So, we’ll place that within that category. And yes, so it’s using the term, being cautious of using that term,
Helen Bird 52:31
Yes, yes. We tried to talk about positive relationships
Megan Gilmour 52:34
Yes,
Helen Bird 52:36
Yes, but yes, I think, unfortunately, the whole healthy, unhealthy, it’s a really unhelpful dichotomy. And that’s probably one of the problems in our school environments, is that there’s so much in that curriculum that really does lean into that moralistic language around food.
Megan Gilmour 52:57
Yes, yes, and you mentioned it before, and we won’t delve down into this, but it’s you know, that body image, and every body is different, and what’s good for one body might not be good for another body. A weight that’s normal for someone is not normal for someone else, and all of those different things that are going on there is
Helen Bird 53:23
Yes, yes. It’s about knowing what’s right for you and what’s intuitive for your body and what your body needs. And no two kids going through puberty are going to look the same, be the same, have exactly the same energy requirements. It’s all really unique.
Megan Gilmour 53:40
That’s right. And again, at a time when young people are finding it so hard to sort of make sense of things.
We’re coming towards the end of our conversation now, and so I just wanted to ask you, what are the biggest vulnerabilities facing kids with eating disorder at school, and what’s happening now to address those in schools, and is it enough?
I know you’re doing great work with Butterfly Foundation, but I’d love to hear from you on this, just what can we do better, given the challenges and vulnerabilities that we really need to call out?
Helen Bird 54:26
Yes, I think there’s, there’s two levels to that isn’t there. There’s the government level. And we’re really clear that, you know, investing in prevention makes sense, and there hasn’t been significant investment in prevention for eating disorders.
Butterfly has only very recently received some funding for the last few years for our primary school program – Butterfly body bright. But up until that point, there has been little investment in our education prevention services, and it just makes economic sense.
Megan Gilmour 54:59
Yes,
Helen Bird 55:00
Yes, there’s been progress when it comes to kind of treatment and care pathways, and we’ve got a fantastic eating disorder strategy, and that we really do need to be really working hard to implement that at every stage of the step system of care.
Megan Gilmour 55:17
Yes. And can I just ask a question? Are you saying that Butterfly Foundation is primarily funded – putting aside the money for the primary school program – is primarily funded by donors and philanthropists?
Helen Bird 55:35
So, we have it, like most, not for profits, we have a very mixed funding model. So, our helpline is funded by the Department of Health. So, we do get like 25,000 contacts a year to that helpline, and it’s trained professional counselors with their specialism and eating disorders.
But apart from that, we rely, particularly my area prevention at Butterfly, we rely on income from fee for service for some of our programs, which we try to offer at low cost as possible.
And we have some funders that have been with us a long time. So, the Dove self-esteem project, which is a global initiative has helped us since 2006 with funding, so they’ve been a long-term funder.
But yes, we rely on community donations, which are fantastic, our appeals, our tax appeals, our end of year appeals, and you know, different philanthropic grants and donations.
Megan Gilmour 56:35
Well, thanks for answering that. And I feel like you know, I delved into something that’s none of my business. But the reason I asked it was, it was more a statement of shock, I guess. And it just comes back to the, you know, the question about, are we doing enough?
Because if we don’t have a nationally consistent approach to how children with chronic or critical health conditions are – be it medical or mental, and you and I both know that those things go together – you said that from the outset. In whichever place it starts, yes, whether it’s medical or mental, the other thing will be affected. The comorbidity between those two is very, very clearly documented, not just in this case, but across all diseases.
And that consistent approach in schools for how to deal with adjustments, what should be given, you know, how we code or document attendance a
Helen Bird 57:48
Yes, I mean, we provide guidance. We have a guidance document that’s available in the resources section of our website, which is for educators around supporting the recovery of students with eating disorders, and it also touches on that early identification and the kind of the pathways, referral pathways within a school, and onward referral.
So, we do have some guidance, and the National Eating Disorders collaboration, who developed the National Eating Disorder strategy, again, they have some great guidance as well. It’s just about how we get that into the hands of the people that are out there on the front line and the coalface.
Megan Gilmour 58:24
Yes, absolutely, and thank goodness for the Butterfly Foundation and people like you. So I think the point that I’m probably trying to make, which is a bit obtuse, I’ll make it sharp, is we need our governments to understand what children with health conditions need in schools across the board and those systems to be more firmly established, because it is relying on so many organisations like yours, like ours.
And we could, you know, we could kind of combine all of this knowledge that everybody has into a more methodical way for teachers to be able to address the baseline and then be able to have that dedicated understanding of the particular issue, like eating disorders, and be able to pull that into the specifics of adjustments.
Helen Bird 59:25
I mean, yes, I really do feel for teachers, because it’s almost like they have to be a great teacher, they always have to be a bit of a social worker. And, you know, there’s just like you say, I’m sure you’re dealing with, there are so many chronic, long term, enduring health conditions that are impacting young people. And we all want the best,
Megan Gilmour 59:49
Absolutely, yes,
Helen Bird 59:50
We kind of work a little bit in our silos, and we always want our topic area, to be a focus and understood. But you know, for the teacher on the ground, you know, it’s incredibly challenging, and I’m just amazed that anyone can – you know – of the good work that is going on in schools and there is a lot of good practice,
Megan Gilmour 1:00:08
Yes,
Helen Bird 1:00:09
and there is a lot of good practice,
Megan Gilmour 1:00:11
And good people, good people, just, and I totally agree with you, because after sitting on these calls and hearing all of this, I think of the teachers. I think of them all the time. In a single class, you could have 5, 6, 7, 8, 9, 10.
If we look at the numbers, it’s, you know, one in three, at least one in three, or two in five – between 33% and 40% of kids experiencing any number or any combination or more than one chronic condition, and the teacher is trying to teach them,
And you and I know that student needs to be enabled to participate first and be there, and second to be able to learn. But how important that is. How important that learning, and you mentioned it before, peer connection is, and friendship groups and community for young people.
So I suppose that’s why we’re so excited to have these conversations, just to try and drive forward that agenda of a more comprehensive approach and more recognition of the number of kids in schools who are A) missing a lot of school, B) could be severely isolated by that missing amounts of school that mean they don’t really complete their education, and sitting underneath all of that is their own efforts and battle to do with their situation.
Helen Bird 1:01:57
I think, as well, is we have to remember that, you know, we need to talk to young people themselves, because many of them know exactly what they need and what they want from schools and what they want to see change in society. So, they are the experts on their own lives.
Megan Gilmour 1:02:14
They definitely are –
Helen Bird 1:02:15
We need to give them, you know, an opportunity to be heard and have their experiences – and again, what the big thing at Butterfly is drawing on that lived experience community to inform our work and both to inform policy, our programs and resources, but also to amplify their voices to the people in government, so that they can hear directly from people that are impacted who have so much wisdom. Again, so much wisdom.
Megan Gilmour 1:02:50
Yes, this is just so important what you’re saying. And at MissingSchool, we’re doing the same through that lived experience. And one of the challenges is, and the reason why Butterfly Foundation and organisations like yours are so important for that, for that youth voice, is that the unfortunate thing about students who are experiencing a health condition is that they often can’t participate in the way other people, other young people, can to say what’s happening to them and what’s happening in their experience. They’re often away or absent, or silent or don’t want it to be known.
And so, it just makes it more important the work that you’re doing. And yes, and we want to just thank you so much for that, and all of those at the Butterfly Foundation for the great work.
One last thing is, is there anything else that you would like to add to what you said today about school quality of life for kids with eating disorders, we’d love to hear if you have one.
Helen Bird 1:04:11
Yes, I just suppose, to say that although it can feel very isolating as an experience, that there is support and help out there. There’s Butterfly as a first point of call. But obviously, many people working in this space and that if you’re not sure where to start, just jump on the Butterfly website, butterfly.org.au and you can learn a lot more about eating disorders. You can jump on there and see a screening tool.
So we have a screening tool if you wanted to get a sense of whether you should be going to see, it’s validated for over 14 but if you get a sense of whether you should be able to see seeing a primary health care professional, you can download the report and take it with you and sort of use that as a conversation starter with your health care professional.
And for us in the prevention space, it’s body kind month. So, it’s body kind August. So, it’s definitely on the prevention side of things, trying to help people be kinder to their bodies. But of course, somebody with an eating disorder – or somebody in recovery, that’s a really great message, too, and something that we feel that even if we take just small steps to being kind towards our body, that and we can live more compassionately and with greater appreciation for how our body functions. And that’s a positive thing for everybody in all bodies.
So, there’s free resources for families, parents and schools, so you can just jump on, register now, and use the resources whenever you want. Because it’s not just for August.
Megan Gilmour 1:05:51
That’s right. And yes, body kind month that, yes, it’s the only one we’ve got, right? So,
Helen Bird 1:05:57
Yes, we’ve only got one.
Megan Gilmour 1:06:00
Yes, yes.
Helen Bird 1:06:02
Great to learn to live as comfortably as we can in the one that we’ve gone learn to take care of it and respect it just the way it is.
Megan Gilmour 1:06:10
Yes. I love that, and it’s such a wonderful way to close I was going to ask you, what’s your call to action for eating disorders in seven words or less? Do you want to have a go at that as we close off?
Helen Bird 1:06:26
Gosh, what did I say? I think we just need to learn to live, to live and live more comfortably in the bodies that we have and try and be a little bit kinder.
Megan Gilmour 1:06:37
Beautiful, that’s perfect. Thank you so much. I just want to shout out to Butterfly Foundation again, as well as thanking Helen for being here today and joining us and to let listeners know that they can head to butterfly.org.au [https://www.butterfly.org.au].
Go there, get yourself some resources, read up, do an assessment, if you feel that that’s something that you’d like to do, and give, give generously, because we really, really need to appreciate this work and understand the amount of good that it’s doing for our young people, people with eating disorders, and that it’s just such essential work, as we heard right from the get go.
Thank you for joining me today on Live & Learn Helen, it’s been a pleasure to talk to you and spend this time together.
Helen Bird 1:07:35
Likewise, Thanks, Megan,
Megan Gilmour 1:07:40
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 MissingSchool.org.au [https://www.missingschool.org.au] because every dollar makes a difference.
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