RECORDED Tue 9 Sep 2025
SUMMARY KEYWORDS FASD Awareness, fetal alcohol spectrum disorder, prenatal alcohol exposure, learning difficulties, behavioral issues, early intervention, school support, diagnosis challenges, stigma, family impact, teacher training, executive functioning, mental health, prevention strategies, NOFASD.
SPEAKERS: Christine Brooks, Megan Gilmour
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 00:45
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 we have with us Christine Brooks.
Christine Brooks is Vice Chair of NOFASD Australia, the national peak body for families affected by fetal alcohol spectrum disorder. A caregiver to a young adult with FASD and an experienced teacher, Christine has worked in remote northern territory communities, taught early learners and supported teens with diverse challenges. Her lived experience drives her passion to equip educators and foster awareness, prevention, diagnosis and support for FASD. Welcome, Christine, we’re so excited to have you on Live & Learn
Christine Brooks 01:40
Thank you, Megan, thank you so much for having me, especially on FASD Awareness Day. So, it’s international FASD Awareness Day today. So very appropriate. Thank you.
Megan Gilmour 01:50
Wonderful. Well, thanks for calling that out, because today we’re here to talk about supporting school connections for students with complex medical or mental health conditions. So, let’s get started by heading into the first question.
Christine, tell us how fetal alcohol spectrum disorder – FASD – impacts kids, and why it’s something every Australian needs to know and care about.
Christine Brooks 02:20
Well, FASD is far more prevalent than people realise. So, it’s so important that people become educated about it. It’s a lifelong disability, a whole-body disability, so it only can be caused by prenatal exposure to alcohol.
You can’t catch FASD, and you don’t grow out of FASD, but we can do a lot to support those living with FASD and really adjust their lives so they can thrive. Now it affects learning, memory, behavior, attention, emotional regulation, executive functioning skills and physical health.
It’s different in each person, each child presents differently with their own set of challenges and teachers, families, health, the sector, everybody needs to understand that FASD is everywhere in our community. So, it’s really important Australians know about it.
Megan Gilmour 03:16
Thank you for that enlightening introduction, and I know we’re going to get into some detail along the way. So, I’m looking forward to understanding more about this, as are people who listen.
So many people probably assume things about FASD, what’s the million-dollar question Christine, that you get from parents or loved ones when their child experiences FASD?
Christine Brooks 03:47
Well, probably the average age for diagnosis is around six or seven, although it can be diagnosed in infancy. And also, we have adults being regularly diagnosed, so that people, parents, perhaps living with a child for six or seven years, will already understand much of the behavior and the concerns and the difficulties that a child is going to face. So, sort of aware of what FASD is like.
I guess their questions are around how much they can help them, what they can do to help them become independent in their living, their work. It’s also often around the stigma involved, and we support a lot of parents because that’s something difficult for them to face.
It’s interesting because, because each child presents differently, we’ve got a set of different concerns from each family, but it really requires a whole family to care for a child living with FASD.
But with the right environment, understanding and support, they can thrive and have a wonderful life. So, there’s lots that can be done.
Megan Gilmour 04:56
Yes, and very interesting that you mentioned that even adults are being diagnosed, and I know we’ll get into that, it just really kind of caught me, I guess. I thought that it’s something that’s known straight away, but intuitively that it makes sense that we might not be aware.
Christine Brooks 05:18
We have people, more and more regularly, as people – as the education about FASD has come to light just generally – we have more and more people contact us saying, ‘I think I’ve been living with FASD all my life.’ Can be in their 40s, 50s or even 60’s they decide to get a diagnosis. So, it’s a very, it’s a very hidden disability it really is.
Megan Gilmour 05:39
Unsurprising, actually, but I’m so keen to know more. So, what’s the most important thing that you want them to know? And you started to say some of that earlier, which was that these people can thrive. Yes, tell us more about that.
Christine Brooks 06:02
Yes, well, I’m perhaps focusing on younger children, because that’s really what we’re looking at today. But I really want people to understand that this is a brain-based disorder. This is not about bad behavior. We always say it’s not that they won’t, they can’t.
And I think particularly for educators to understand that these children need support, they’ve got a disability. And I always use the example, you know, if they were blind or if they’re in a wheelchair, all sorts of supports and understanding would be put there, in place to support the child.
And if it’s not recognised, then it’s always assumed that the child can do better, try harder, not get tired, all of these things. So, when family, schools and communities understand this, children will do far better when they feel supported, and of course, the families will be able to cope better too.
So, I guess empathy and flexibility will make all the difference and seeing the child through what we call a FASD lens, and trying to see the world the way the child is seeing the world really does help, yes.
Megan Gilmour 07:04
Yes, and I just want to jump in and ask so many questions, and I know I have questions ahead, so I might just hold off on that, because I think we’ll cover them. But thank you for identifying that this is a disability and it’s a brain issue.
So are we saying it’s a structural brain issue, that something’s happened there at a critical development stage in utero. And we’re looking at structural changes that took place in the brain, or things that didn’t go the way they might have?
Christine Brooks 07:44
Yes, look, it’s a very complex disorder, and because it is caused through prenatal alcohol exposure, it depends on the time the alcohol was consumed. So, you know which trimester, how much, what was consumed, the health of the mother, the genetics, the amount of drink, it’s extraordinary the number of factors that come into play, and that is why it presents differently in each child.
So, my girl that I look after is the eldest of six and each of her siblings, well, they’re undiagnosed, at this stage, she’s been diagnosed. Well, they all present differently. I assume they all have FASD. They all present differently because it depends on so many different factors.
Megan Gilmour 08:31
Yes, I guess it’s a range or a spectrum or
Christine Brooks 08:34
very much a spectrum yes
Megan Gilmour 08:35
presentations. Yes,
Christine Brooks 08:37
very much a spectrum. Yes.
Megan Gilmour 08:39
Okay, we’d love to know –
Christine Brooks 08:43
I think we should jump back to the fact that we didn’t go into the actual name of FASD and the fact that our organization is called NOFASD, which does stand for National Organisation of Fetal Alcohol Spectrum Disorder. And just when you said the word spectrum, I thought, we better bring that up. It is part of the name, so fetal alcohol spectrum disorder.
Now people often feel awkward about using the name, and they will just say that they have, you know, a brain-based disability or something like that. They don’t need to use the whole terminology, but that’s as it is known now in Australia.
Megan Gilmour 09:18
Aha, yes. And we talked about before the call the play on the word no – national organisation,
Christine Brooks 09:26
yes, but we would like there to be no FASD,
Megan Gilmour 09:28
Absolutely. And thanks for clarifying that for us. If you’re willing, we’d love to know what brought you into the world of FASD.
Christine Brooks 09:38
Well, in 2012 a little girl came into my life sort of unexpectedly, she’s now nearly 21 and I knew she’d had a lot of early childhood trauma, so a lot of the challenging behavior I put down to trauma, and I just assumed it was that.
Now I was teaching, and I had been teaching for many years, and really it was a lack of knowledge on my behalf, because I wasn’t aware of FASD. I’d heard of it, but I really didn’t know much about it.
And as I, well, she was living with us, and I was helping teaching her, and she was coming to school with me, I started to observe her and realised that some of her behavior didn’t really match with all the trauma behavior that I’d expected.
So, I delved deeper, and when we discovered that she actually – very likely – she seemed to tick a lot of the boxes would have FASD, and I knew about her prenatal history, so I suspected that it was FASD. It started making sense.
So that’s when I became very interested in this complex disorder, and it helped me understand her. But there’s no greater teacher than the person living with the condition to give you a true understanding.
So, in a way, she’s my teacher, and as I say, I’m her advocate, and we’ve worked together over the years, and I’ve become very informed through watching her and her behavior and trying to work out the way she processes the world.
So that’s how I ended up where I am really. And I wish all teachers knew about FASD because once I had a better understanding, of course, I could see it all around me.
Megan Gilmour 11:16
That’s exactly what I was thinking when we started this conversation, and my mind joined some dots, which I’ll share as we go along, and once we get into the school component of our conversation.
But thanks for telling us what brought you into the world of FASD and I might add, a remarkable relationship, it sounds as well,
Christine Brooks 11:38
Yes, very close.
Megan Gilmour 11:40
And I loved it when you shared that she is your teacher, and that’s really how we should look at the lived experience, isn’t it to be able to be yes, really, truly understanding.
So, knowing all that you know, what’s your biggest hope for kids with FASD or experiencing FASD, their families and loved ones when navigating this disorder?
Christine Brooks 12:12
Well, I suppose, I hope that they will be understood and supported without judgment. There’s a lot of stigma and judgment around FASD.
I wish, desperately wish, that schools and services would become more FASD informed. That’s why I thank you for giving me this opportunity, because I’m out there hoping that more people find out about it and become aware.
I don’t want children to be punished for doing things that are out of their control, and these children are constantly being punished for things that they cannot control, so we need to have that awareness really, really within schools.
Families often feel isolated, and particularly if there’s a lot of behavior issues involved, you know, these are the children that don’t get invited to the birthday parties. So, more support in judgment, more inclusion.
I’d love Australia to build a strong sort of culture where prevention, compassion and inclusion are just part of the way we live, and we’ve got a long way to go for that, but it would be wonderful that the people living with FASD feel as they’re really accepted in society.
Megan Gilmour 13:19
Yes, different brains, different bodies, different behaviors.
Christine Brooks 13:22
Yes, I’m sure you know
Megan Gilmour 13:24
a place for all of it, though,
Christine Brooks 13:26
Absolutely.
Megan Gilmour 13:27
And yes, I’m really seeing how this could explain a lot of what we’re seeing currently in our environment. And it’s not being seen for what it is, either it’s probably getting some – there’s some more misconceptions which leads right to the next question.
Christine, what are some of the common and perhaps frustrating public misconceptions about FASD, and how have you seen it impact families?
Christine Brooks 13:58
Well, getting back to the behavior, a lot of these kids are considered naughty or bad. And you know, rather than just living with brain differences, you know, they’re sort of labeled in a very negative way.
A lot of people believe that FASD is rare, and I have to say that I was one of those. I mean, as a teacher, I knew all about autism. We’d had so much professional development. I’d never had professional development about FASD.
So, we need to educate people and get it out into the communities, that it’s not rare, that it’s everywhere and the children won’t grow out of it.
Also, the under-thought, and this is still very common, that it is an indigenous problem or a socio-economic problem, and it’s not wherever there is alcohol, there will be FASD.
It’s, you know, it’s right across the country, and it’s very prevalent, because we’re a culture that loves our alcohol, and it really is everywhere. So, we need to just change some of that thinking.
Megan Gilmour 15:00
Yes, well, again, I’ll put myself into that category as well. But the moment you started talking, I just, I got it. I got exactly what you’re saying.
We’re a country that loves a drink, and we’ve talked about the fact that it can be a range of presentations, depending on more severity, and what the underlying circumstances were in terms of the consumption of alcohol – prenatal.
And also, to address that misconception that that would just exist in certain cultures or certain parts of the country, certain demographics, let’s call it, but actually, given what we know about Australia’s love of a drink, and I can also see how there would be a lot of judgment of women too.
Christine Brooks 16:08
Oh, huge judgment. And, you know, you don’t have to be alcohol dependent. You can be a social drinker.
And many women who are unaware it’s not their fault. They are unaware of the outcome of drinking during pregnancy. And so, they love to have their wines with their girlfriends. They’re not dependent on alcohol. They just socially drink. And very sadly, these children are affected.
So, one in 13 of all cases where women have been drinking during pregnancy, the outcome will be a FASD diagnosis.
Megan Gilmour 16:42
Yes. Could you just say that again for me?
Christine Brooks 16:45
So, one in 13 of all cases where a woman is drinking, whose pregnancy is exposed to alcohol will result in a FASD diagnosis.
Megan Gilmour 16:56
That’s huge.
Christine Brooks 16:57
It is. It’s massive yes, and you wouldn’t take that risk. You wouldn’t say, ‘Well, you know, let my child run across the highway. He may not be hit by a truck’ – ‘I’ll have a drink; we may not have FASD’. But of course, it’s often, you know, could be mildly affected, and not really, you know, right up to getting a diagnosis. But it’s not for nine months.
Megan Gilmour 17:19
Yes, and to me, when given everything you’re saying in the way that I’ve joined the dots in such a short time because of your insights, I wonder, then why we’re not having a bigger conversation about this, why there isn’t more public information, campaigns and social education campaigns.
Because I can also see how this could be misdiagnosed as ADHD or autism spectrum disorder, and yet it’s not.
Christine Brooks 17:42
Well, a couple of the reasons; the alcohol companies are very powerful, very powerful. You may know, on all alcohol now they have to have the little – it’s mandatory to have the label warning against drinking. That took nearly 20 years to come about.
Okay, we have had – you might be aware of the Every Moment Matters campaign, which was advertised on television. Well, they’re very costly. So, everybody comes back to money.
And you know, it hasn’t got the glamour, this disorder. We don’t get enormous amounts of funding. It’s one of those things we work hard to get, government funding, to help support our campaigns. But like everything else, everybody needs money. And I suppose that’s the bottom line.
We certainly are doing as much as we can, our organisation, and there are other organisations as well, just trying to get the word out there to make people aware.
Megan Gilmour 18:52
There were one in 13 of all cases where there’s drinking involved in prenatally. I think that’s a shocking stat, and there’d be so many people who aren’t aware. So yes, let’s dive deeper into this.
So, do you know, Christine, how many Australian children and youth might be living with FASD right now? And if so, is that data accurate or tracked?
Christine Brooks 19:22
Well, no, because we haven’t done a proper prevalence study throughout Australia. And of course, it’s misdiagnosed or undiagnosed, but the estimation, which is pretty good, is between 2-5%. So, we’re saying around 3.6% which is about one in every 28.
We like to say there’d be one child in every classroom in Australia with FASD. So that’s a lot. That’s high. It’s higher than a lot of people realise. And I think if you think of that as one child in every classroom, it just makes you realise how common it is.
Megan Gilmour 19:57
Yes, absolutely. It’s a great, I shouldn’t say a great way to look at it, but it makes it really simplifies it for us
Christine Brooks 20:07
It does simplify it, yes,
Megan Gilmour 20:10
And is there a risk of delayed diagnosis, or are most cases of FASD picked up easily? I think you touched on this earlier, but it’s worth repeating here.
Christine Brooks 20:20
No, there’s a lot of delayed diagnosis. It’s very common, and sadly, if it’s mainly sort of the behavior that people are focusing on, you know, again, the mother is blamed, perhaps not being a good mother, or there’s not enough discipline there.
Signs can be very subtle, and they can overlap with ADHD, with autism or trauma. And so, the children who are not diagnosed or diagnosed as something else, can be just left without the correct support.
And of course, those missed opportunities are meaning that early childhood support, which really does make a difference, is just not there.
So up to 70% of those living with FASD will also have ADHD. Now we know how common ADHD is, so when you think that 70% of people living with FASD will have that, you can see how easily it’s misdiagnosed.
Megan Gilmour 21:18
Yes, but yes, super important in terms of treatments and other ways to deal with it I imagine.
Christine Brooks 21:27
Absolutely yes, the strategies, especially in the classroom, you know, are quite different. If I was supporting a child with autism, I would use different strategies to support a child with FASD.
And the children are different. You know, you really do need to understand FASD, to see that they you know, you need to treat them with different supports.
Megan Gilmour 21:48
Yes, and we’ll come to that even deeper, but you might want to let us know now, like, what kind of complications do kids with FASD face, and how might that be different to some of these other conditions that we’re mentioning. Do you want to tell us, maybe what that looks like.
Christine Brooks 22:09
Well, it’s tricky, because it is a whole-body disorder, so we’re not just thinking about the brain. And research shows us that there’s over, possibly over 400 different traits. So, there’s physical traits, there’s cognitive traits, the behavioral, emotional traits and health traits.
So, most individuals will have their own combination of these. You know, that’s unique to them. No two people have the same profile with FASD. It’s not just tick-the-box; therefore, they’ve got FASD situation.
And of course, you don’t have 400 traits, but you might have, you know, some bone problems or hearing or eye problems.
You may have the facial features, only a very small percentage present with the facial features, and that depends on the time when the alcohol was consumed during the pregnancy.
Some have a lot of memory problems, learning difficulties, impulsivity, impulsivity and friendship issues, social cues, have, struggling with challenges with around there, health traits like sleep, sensory a lot of sensory problems usually arise. And co-concurring conditions. So, when you’re overlapping, and in our situation, we had the trauma as well as the FASD. You know, a lot of those traits were crossing over.
So, it becomes really difficult to define and say, right, this is caused by the FASD. There are some common traits, of course, the core traits, the things like dysmaturity, memory, those sorts of things are often the ones that we really focus on, that are more common in most children.
So, you have the learning difficulties that develop because of all of these things, the memory gaps, difficulty understanding consequences. Consequences don’t work for kids with FASD. They live in the moment, lots of social challenges and social problems.
They end up with a higher risk of school suspension, mental health struggles and involvement in the justice system down the track. So, it all sort of unfolds because things weren’t addressed early in the piece.
Megan Gilmour 24:21
It shows, well, early intervention, yes, but also intervention by understanding the root cause is what you’ve repeated several times,
Christine Brooks 24:36
Yes, Megan, you’re so right, yes, and understanding that this is not – no mother knowingly would harm their child. So, we’ve got to be so aware of this, no blame, no shame,
Megan Gilmour 24:48
I love that
Christine Brooks 24:50
Where we really are there supporting this family and this child, and particularly the mother, who often is just riddled with guilt through no fault of her own.
You know, 50% of pregnancies in Australia are unexpected. 50%.
Megan Gilmour 25:05
Wow!
Christine Brooks 25:06
So, you could be having a big celebration, a wedding, being out on a cruise, and be drinking fairly heavily, and then find out you’re six weeks pregnant, you know?
Megan Gilmour 25:18
Yes, this is so true. And yes, right at that really that critical inception stage.
Christine Brooks 25:25
It’s around 60% of women consume alcohol before they know they’re pregnant. And so often we hear, ‘Oh, I gave up. As soon as I found out I was pregnant, I gave up’.
But if you have had, and again, not necessarily dependent on alcohol, but just socially drinking, you could have had a fair bit during those first few weeks where you were unaware and they’re the crucial developmental stages.
Megan Gilmour 25:50
Yes, it’s kind of frightening. How easy, you know, because a lot, well, most chronic medical conditions, there’s no choice, right? You know, it could be genetic or, who knows why. But this is something where awareness could actually make a profound difference,
Christine Brooks 26:20
Absolutely totally!
Megan Gilmour 22:21
Actually, totally prevent it completely from happening. And yet, when we think about it, and just those really critical details for us to understand, 50% of pregnancies are unexpected, and 40% – did you say 40% of women have been drinking before they discover –
Christine Brooks 26:41
No, It’s higher than that. It’s nearly around 60%. Yes, women, they consume alcohol before knowing that they were pregnant, so that, I mean, that’s very high. And as you said, that’s why our warnings are, if you think you could become pregnant, do not drink alcohol.
Megan Gilmour 26:58
Well, that could just be anyone – that could be anybody.
Christine Brooks 27:02
Well, it could be, but that’s how vital it is. It’s, I mean, it’s life changing,
Megan Gilmour 27:07
Absolutely life changing.
Christine Brooks 27:09
And life changing
Megan Gilmour 27:10
for the family too, in terms of, I don’t want to use the word management, but let’s just use it. You know, the management of that situation for the family and the child then, is a really significant undertaking, I imagine.
Christine Brooks 27:32
Absolutely yes. And we even say this in supporting the mothers not to drink. This is not just her; this is a whole society. This is the partners and the fathers; they need to be there to support the mother and help her get through these nine months without drinking. Because, I mean, it’s one thing to be a social drinker, but if you are dependent on alcohol, it is another whole journey, and not an easy one.
Megan Gilmour 27:56
Yes. Well, I don’t drink anymore, but there was a time when I’d have a glass of wine or two just about every night with dinner so and I didn’t consider myself to have a problem with alcohol.
I think it was when I had to write it on a form in a doctor’s surgery, and I went, yes, two times seven. I did the math. And that isn’t even necessarily why I stopped drinking, but it could have been me. I guess that’s what I’m saying.
Christine Brooks 28:31
It could have been any of us, Megan, yes, really, it’s not, it’s anybody in Australia. It is not just one of these things that says, settle down. And that’s where so often people assumed it was just an indigenous problem. It’s just, oh, that wouldn’t happen. I’ve asked to speak at schools, and indeed, “we wouldn’t have that problem at our school”. You know, that’s very narrow-minded.
Megan Gilmour 28:51
Do you drink? Is there a possibility you could be or get pregnant? I mean, I think that’s the key point here, for me is, is that anybody who would be making that judgment, and I can put myself in that category too, because before we were talking, I might have even thought, gee, how could you do that?
But when you’ve taken us to that moment of recognition of the fact that many pregnancies, while you’re saying half, are unexpected, and then that you could have been drinking without knowing, that’s just, that could be just anyone.
I think to join the dots on that is so, so important, because even as a teacher, working, obviously in a school, and then you come along and you share about this, and they come to understand that some of the children in their class or school have FASD, they might even still say, ‘Oh, gee, that’s terrible’, not thinking of the possibility that if they drink, it could be them. And I think this is a really key point here.,
Christine Brooks 30:03
Yes, and that that judgment, that even if it’s unbiased judgment. I mean, there’s a lot of judgment around these mothers. They don’t need that. They’re struggling enough. They need our support, because it could have been any one of us. You’re so right, yes,
Megan Gilmour 30:15
Yes. And I wonder, in your experience, do you think that where, even where FASD might be, well, is diagnosed that the mother, the family, might still prefer to call it ADHD or autism spectrum disorder?
Christine Brooks 30:34
Yes, neurodevelopmental disorder. I don’t think ADHD would really serve the child. I think they could just say that, yes some do. I’d rather – there’s no need to tell anybody – you have the right diagnosis so you can just say neurodevelopmental disorder.
Megan Gilmour 30:50
Yes, do GPs diagnose this? Who, who is picking up?
Christine Brooks 30:54
There’s another whole, there’s another whole webinar for us; diagnosis is very tricky because it’s a multi team approach. We need psychologists and pediatricians, and we need occupational therapists, speech therapists.
It’s quite complex, and it’s based on the domains, nine domains of the brain, and assessing each of the domains. Look, it’s quite complex, I won’t go into it now. It’s not an easy thing to diagnose, which is another problem of so few people are diagnosed.
Megan Gilmour 31:31
I think it’s way underreported, Christine, that would be my guess.
Christine Brooks 31:34
Yes, and the waiting list is years long. You know, it’s really hard to be to get in.
Megan Gilmour 31:41
Under reported and undiagnosed. I think the numbers are much higher than what we’re acknowledging here. Given what you’ve said, I really think that would be the case. Well, I could just keep talking about the very interesting detail of this.
Let’s move on to the next question, which is, how are siblings of kids with FASD impacted? And what should families be across?
Christine Brooks 32:14
Well, it’s look, with any type of illness, disorder, condition, it’s hard on the siblings because they’re not going to have the same amount of attention as perhaps the person that’s struggling.
If it’s in a family and there’s only one child with FASD, then perhaps the siblings are very protective and more understanding, although they become frustrated and a bit overshadowed with the behavior.
But sadly, sometimes there are a number of siblings in one family, and we often see this, particularly if there has been a problem with alcohol. So, you might have, you know, a number of children, and this becomes really difficult, really hard to handle.
So, peers often don’t understand. They can’t, you know, this is so hidden. You look at the child, if you saw my gorgeous girl, you would think, wow, she’s great at sport, she’s funny, she’s got a job now there’s nothing wrong with her. They don’t understand.
They see this person that looks to them perfectly fine, and they’re not, and they don’t get it. And so, they perhaps start bullying them or annoying them or just being different. So, you have those that interplay between siblings, which is not always positive.
And again, with education and the family understanding that if this child was supported in the right way, the behavior wouldn’t perhaps be so severe. Yes, a tricky area to cope with. And each case, of course, is separate and different.
Megan Gilmour 33:41
So, well, this leads us to school. So, what’s the current population of school aged children? You mentioned this earlier with FASD, and how accurate is this?
Christine Brooks 33:55
Not accurate. I’d have to say. We don’t have exact numbers, because FASD is underdiagnosed or misdiagnosed, and we went over that before. You know it’s often ADHD or trauma or even anxiety, autism, a lot of these cross over.
So, it’s hard to know. We’re saying there’s probably one in every classroom. Of course, some classrooms would have more. Some would have less. It’s about having the teachers really become aware enough to be able to say, I think this child might have FASD, but of course, it’s a sensitive thing, because you cannot approach a parent with that. That’s not the place of the teacher.
But just understanding that for diagnosis, we need evidence of prenatal alcohol exposure, and that’s not always easy to get. And you know, some parents don’t want to talk about it. So, it’s tricky to have it diagnosed.
My advice to teachers, if you suspect it, then start putting the strategies in place, diagnosis or no diagnosis, the strategies are often very successful for all children and things that will support those with FASD. And just having that, you know that idea that maybe it is, therefore I can help this child the best way I can, through using these strategies?
Megan Gilmour 35:10
Yes, and we’ll be able to draw on your incredible knowledge there at the intersection of being a carer, and now a subject matter expert I might add, on this, but also as a teacher.
Before we do that, could you let us know if kids with FASD currently miss a lot of school, and if so, why?
Christine Brooks 35:36
Well, yes, they do, perhaps more as they get a little bit older into the teenage years. They have suspensions, exclusions, school refusal, and so much of it is around their inability to regulate their behavior, and so they’re suspended from school.
My daughter went to a wonderful school. It was actually a boarding school, because she comes from a long way away, and they would ring us. It was a funny situation, because we actually didn’t live that far away, and they would say she’s not coping.
And they were wonderful, because they’d never say, you know, she’s naughty or anything. They’d just say, she needs a break. Can you come straight away? So, we’d zoom out there and grab her and bring her home for a few days, so she can just de-escalate, and would, you know, look after her and pamper her and calm her down. And then she was ready to go back.
But her anxiety levels had just got higher and higher and higher, she couldn’t cope, and she’d lash out, and all sorts of problems were happening at school, so that was a great way of supporting her.
And she got through and finished year 12, because the school were aware of the best way to handle her, and she wasn’t told she was naughty. She was just, you know, she needed a little bit of a break.
And I think if schools are open to that sort of thing. That’s wonderful, because it gets them from an environment that is highly anxious to be in all day long, they’re often getting into trouble.
You know, when you can’t even pack your own bag or get to a place on time, you’ve got no sense of time, organisation skills are very poor. You’re always going to be in trouble. You’re going to be the child
Megan Gilmour 37:05
Always on the back foot,
Christine Brooks 37:06
I know, and it’s simple things can solve these problems, but teachers are, you know, overworked, and don’t even think of them, and consequently, school becomes a horrible place to be in every day.
So yes, a lot of children don’t want to go to school. They play up to get out of school, or that they can’t help their behavior, they really can’t.
Megan Gilmour 37:26
Or they’re invited not to be in the classroom.
Christine Brooks 37:28
Yes,
Megan Gilmour 37:29
Well, yes. I mean, the other thing I want to draw attention to is the difference that it makes when a school does have the knowledge and insight that you’ve brought to the table, and so together, you can work that out and just what early intervention and ongoing good interventions can achieve; a year 12 outcome for a student, a young person who probably wouldn’t have got there without that.
Christine Brooks 38:06
I can tell you she wouldn’t have – the school and we – were there for her. This is a child that had been taken from her home at an early age. Suffered severe trauma. She’s now completed year 12. She’s got a job. She’s driving a car.
Now, she needs me every single day to help her organise her life – every single day. She’s actually not living with us at the moment, but we’ll talk on the phone two or three times a day, and it’ll be the funniest little questions that she cannot manage.
So, I’m there for her as a backup person, but she’s achieved so much. We’re so proud of her because of all that was put into place at a very early age.
Megan Gilmour 38:43
Absolutely, and the life changing effects of an education, and someone who believes in you
Christine Brooks 38:49
Yes, yes, that self-pride and that feeling
Megan Gilmour 38:51
Thats everything, it’s everything. And, and, you know, for anyone who’s listening, we could predict where that would have headed with all of those circumstances running against her, and look what was able to be achieved. I think that’s really just so inspiring, because if we can do that for one young person, we can do it for all of them.
Christine Brooks 39:21
Well, we have thousands and thousands of kids out there who need some help.
Megan Gilmour 39:29
They do. I have to believe it can happen. To leave a child in those circumstances, and as you say, through no fault of their own, but even if it is through a fault of their own, it’s still up to us as adults to shepherd them through an education in the hopes that you can break the cycle of those things that might have led to them being or displaying the results of those circumstances in their behaviors or their inability to cope.
It’s a really wonderful moment to just reflect on early intervention and understanding empathy, which you’ve talked about so often in our conversation as well. To then hear how that makes a difference. And at the same time, you know, there’s still somebody in the background helping that young person to navigate the world as well, and what’s possible. I think it’s really, really wonderful.
So, Christine, what are the critical times then in the school life of a kid with FASD? And tell us a little bit about your thoughts about those kinds of critical times.
Christine Brooks 41:03
Well, I was primarily an early years teacher in the first years of school. So, I always, I don’t know whether it’s because I loved it so much, I always say, these are vital years.
If a child can learn to love school in that first year or two of school, you’ve given them a gift, because school from then on is a very positive experience for them. Even if they have their bad years, they’ll be able to know that it’s not always like that.
So those early years, adjusting and fitting into structure and learning social rules are vital, and establishing those for a child living with FASD is more difficult, but can be done, and understanding that for them, it’ll be a lot harder.
So those early years are really vital, and the transition into high school, that’s huge, because that independence is expected of them, and a lot of them really struggle with that. The academic demands are often overwhelming.
Interestingly enough, only 26% of children living with FASD have an intellectual disability. So, we’ve got a lot of people that we know with FASD that have got very high IQs. We can’t assume that a child with FASD has got a low IQ, you know, struggling with schoolwork.
So, it can be tricky for them going into that secondary level. That’s a difficult time, the teenage years, you know, the hormonal changes, they’re struggling. They’re not really fitting into, they have this immaturity, so they’re not, they might be 16 or 17, but emotionally they’re only seven or eight, and this, of course, is with them all their life.
Megan Gilmour 42:37
Developmental,
Christine Brooks 42:38
Developmentally, their understanding of things like time and money is years less than their actual age.
So, these are the things that I deal with, with my girl, who’s now 20 and in much of her behavior is that of a 10-year-old. Looks like a 20-year-old, loves the music of a 20-year-old, but still has some very immature behavior, thoughts, abilities to cope socially, and manage herself.
So that stage of moving into the teenage years is a difficult time for them. A lot of peer pressure, and that’s often where you see the mental health issues starting to develop.
Megan Gilmour 43:15
And what about puberty as a hormonal issue? Is that, yes, does that adding to the mix there?
Christine Brooks 43:21
It does. It really does. And you’ll often see these are the stages where the kids are getting into trouble. I mean, they seem to get into trouble anyhow, but you add FASD into the mix.
These kids, they want to please. And so, if you’ve got a bit of a leader in the in the group, and they’ll be targeting the children that are weaker and want to please. And they end up in situations where they’re just way in over their head and they don’t understand. But they’ll do what they’re told, and they’ll go and do things that they shouldn’t be doing, and they’ll get in trouble.
Megan Gilmour 43:50
Probably easier to just do what people say, because it’s hard to make the decisions for yourself it sounds like.
Christine Brooks 43:55
That’s right, yes, yes. So, they’ll confabulate, so they’ll make up stories. It becomes very complex and difficult, and often that’s a time in their lives where they just pull out of school.
Megan Gilmour 44:11
Yes. Okay, so they’re the critical times, and I just want to throw this sub question in. At what point – well, I’ll ask you two questions.
At what point did you share with your girl that you suspected or was it a diagnosis, that this was what was going on for her? And what would you – I mean – do children get told that they have FASD?
Christine Brooks 44:48
That’s a really good question. It’s a great question Megan and something that we’re often asked on our helpline. And it’s also a very personal question, because families have their own views on this. They really do.
So, I’m sharing with you my view, which I have to say is truly only my view. I can’t say it’s necessarily the recommended view. It’s worked for us because of our situation.
So, she was living with us when she was seven, and when I started suspecting that it was FASD, and she was doing some things that, you know, were really challenging, I would say to her, you know, I think that maybe your brain is not working like other people’s brains. Because you’re finding it really hard to do this or that, or, you know, you can’t remember to go and brush your teeth, and you can’t remember this and that.
So little things would come up, and I would start talking that maybe your brain’s working a bit differently. And then I said to her, you know, your mummy didn’t know that it wasn’t a good idea to drink alcohol when she was having you. It wasn’t her fault. She didn’t know, and that’s why your brain works differently.
So, we kept that going for a long time, and she started, she really understood it. She would tell people, ‘oh, my mum drank alcohol’. And it was just, you know, so blase. And we introduced the whole idea of it’s got a name, it’s called fetal alcohol spectrum disorder, and lots of kids have got it and these are the things.
And then, as she grew older, and now that she’s not living with us, I wrote out a list for her of how her FASD presents. She gets tired very easily, which is another common trait. She needs to sleep virtually every afternoon. I mean, every afternoon through school, she was asleep – I always say thank you to the teacher that put the couch in the classroom so she could have a lie down.
Megan Gilmour 46:27
I love it.
Christine Brooks 46:27
You know, she always had the head on the desk for sleep in the afternoon, and to this day, she goes –
Megan Gilmour 46:37
Fatigue,
Christine Brooks 46:37
Fatigue, absolute. I’m trying so hard to keep going. And a lot of sleeping problems. Hard to get to sleep, hard to wake up. A lot of these children suffer sleeping problems.
So, I wrote down all the things that I thought was caused by her FASD, and that sort of helped her a lot, and she’s so good about it.
And I said to her recently, have you told your boss, she works at a shop, that you’ve got FASD? And she said, ‘Oh yes. I told her I have’.
And she went home at lunchtime one day and didn’t come back. The Boss rang. She said, ‘Oh, sorry, I fell asleep’. And the boss was great and said, ‘Okay, well, now you’re awake, will you come back to work?’ That’s because she knows she’s got FASD, making allowances.
So that’s the sort of world I want these kids to live in, where people get it and they don’t say, ‘Oh, you know, how could you do that? You need to be at work’ and all the rest of it. No.
Megan Gilmour 47:25
Oh, we’re so into the cookie cutter model!
Christine Brooks 47:28
Aren’t we? You know what, it’s now hard to make allowances.
Megan Gilmour 47:31
I know but we’re even, just like, you know, again, I count myself in it. I have to constantly – you know – we’re indoctrinated into this is how people should be – and you have to constantly be vigilant about your own processing of the world of others., I just keep saying, different brains, different bodies, different behaviors.
Christine Brooks 47:56
Absolutely, yes. I know somebody said to me, once, ‘You know, of course in the justice system the jails are full of people with FASD’, and they said, ‘Gosh, if they all had Down syndrome, there’d be a national outcry.’
Megan Gilmour 48:12
Absolutely
Christine Brooks 48:12
So true.
Megan Gilmour 48:14
Yes, it is.
Christine Brooks 48:15
But we can’t see FASD, so we expect so much more.
Megan Gilmour 48:18
Yes, an invisible condition. Yes, that’s a powerful statement actually.
Christine Brooks 48:24
It’s really hit me, and I’ll often say it’s like saying to a child, grow taller. I’ve told you three times, grow taller. Why aren’t you growing taller?
Megan Gilmour 48:30
Yes, and especially, let’s overlay with that, that in many states in Australia, you know, the age of criminality is 10, or incarceration could be 10 years old. We’re just really, well, I mean this just really joins some dots for me, as I said.
So, what should families and schools be prepared for at different times? Then we’ve talked about the critical time. So, if you want to just reinforce a few of the key messages there,
Christine Brooks 49:05
I suppose, in those early years, you know, just provide routine that you know, which all little ones love, lots of visual supports.
Don’t expect them to remember things. And I often use that example where I before I realised that it was FASD we were dealing with, I’d be saying, ‘Go and brush your teeth’. Well, she could never get from the kitchen to the bathroom. She’d be under the bed. She’d been out in the carport, you know, on the roof of the house. It was never where she should have been.
Then, instead of me getting annoyed, which I used to regularly, about this toothbrush business, I just thought, right, I’ve got to change this. And it was no use asking her. I had to change so I just took her by the hand. We walked up to the bathroom together and brushed our teeth together. Problem solved, easy. You both enjoyed it, easy to do.
So, it doesn’t have to be hard to support these children. Just think differently and make sure that you’ve got a lot of patience, a huge amount of patience. Just control your urges to get annoyed and frustrated and understand they’re not doing this on purpose. They are not doing it on purpose.
They’re funny, they’re lots of fun. They need lots of patience. So, I think parents should work closely with the teachers and really help them understand the strategies for learning that work for them.
And as they get older, you know, focus on strengths. Always build on their strengths. Find out what they are and make sure that the learning is based around that, looking at their life skills, building up their life skills, that was my big thing, that I wanted her to be independent. I’m getting older. What’s going to happen? We need her to be able to, you know, cook for herself and look after herself and all the rest. So, those are a few of the little things that I would suggest.
Megan Gilmour 50:46
Yes. Christine, everyone listening is thinking, I wish I had a teacher like Christine.
Christine Brooks 50:55
Thanks, Megan!
Megan Gilmour 50:58
It’s a beautiful moment to just hear I was the one who had to change, you know. And it was just so simple, instead of asking and being perpetually disappointed and then resentful or frustrated, we’ll just do it together, and that solves the whole problem.
Christine Brooks 51:18
Look I learned that long before I had it living with FASD in my house. I learned in the classroom, if I wanted to have a happy day – I couldn’t rely on the children, I had to rely on myself to be happy.
Megan Gilmour 51:28
Yes, there’s something very like Zen about it, actually. It’s like, you know, going with the flow rather than trying to move the water or fight against it. It’s like, well, yes, all of those options are there, but we often take the one that’s just not working.
Just understanding what could be different in the classroom, and that those approaches could actually help everyone, not just the student with FASD, or the students with FASD, or any other condition for that matter.
Christine Brooks 52:11
Oh, there’s many a reason a child will be misbehaving in the classroom and telling them to stop it is not going to be the way to do it.
Megan Gilmour 52:18
No, well, they’re kind of designed to do it. That’s what I think. I’ve been talking a lot about – that the current school model no longer fits the demographic of students and the world that they live in.
I can really see that disconnect very clearly now that I’ve been working on this for a long time. I thought it was just that the school model needed to add two-way digital connection to the classroom for kids who couldn’t be there. And that was very simple, that it was proved in COVID, and it’s just like, why did we bring forward all of the problems of COVID-19 and leave all of the innovation behind?
I mean, but it’s more than that. It’s that we have a whole – and we talk about this – but we have a whole new generation of young people, Gen Z, Gen Alpha. They are designed differently. They are in a different world, and we’re trying to kind of fit them into an analog, kind of old-fashioned school model that required you to sit and do what you were told. And we did it, you know.
Christine Brooks 53:36
And it’s not working.
Megan Gilmour 53:37
It’s not working. It’s just being disrupted now by 21st Century pressures, and it will have to change. I can see that happening day after day.
But unfortunately, it looks very fractured out there – a lot of different sorts of pop-up models, some of them quite worrying that aren’t, I don’t think will be safe for children. You know, online, scaled technological, school set up for commercial reasons.
Yes, I see your face too. It’s really, really troubling, and not only academically unsafe, but also just not safe.
Christine Brooks 54:22
And I can hear your worry, and I share it with you. I’ve always said that all behavior is functional, and we’ve got to look at the child and say, ‘Why are they behaving this way?’ Let’s not say you have to behave a certain way that I want you to behave.
Let’s get to the bottom of that behavior and see – maybe they have a cold, maybe they’re hungry, maybe there’s a hundred reasons why.
Megan Gilmour 54:44
Yes
Christine Brooks 54:45
But let’s sort out the problem before we just expect a kid to able to change their behavior.
Megan Gilmour 54:50
Yes, and kids typically are very happy just to have a good time, aren’t they, if it’s enjoyable, they’ll get in there, they’re the first ones in.
Christine Brooks 55:00
And why can’t learning be fun?
Megan Gilmour 55:02
Oh, yes,
Christine Brooks 55:03
Don’t get me started!
Megan Gilmour 55:05
We’ll, we’ll head off on a tangent, I’m sure. But I think it is important to recognise this too. And I wonder if there is societally an increase in alcohol consumption that is also potentially increasing this.
I don’t know the facts or figures on that you may wish to comment on that if you do have that data that, yes, people, women, men, everyone is drinking more, and more often. And so maybe this is also going to be part of the reason why we’d see more children in schools facing this issue?
Christine Brooks 55:48
No, I don’t have data on that. I don’t even really want to comment without sort of knowing more. Of course, we’re looking at the children now that are at school, the teenagers that are struggling, that were born 16 years ago.
Now, I would like to think we’ve come a lot further with our knowledge of FASD. I still meet people who say, ‘What is it? I’ve never heard of it,’ or have heard of it, a bit like myself years ago, and didn’t know exactly what it was.
So, all we can do is put this out, people like you, spread the word, and tell people these young women and the young men that they need to make sure that during pregnancy, before you even get pregnant, you stop drinking.
Megan Gilmour 56:32
Yes, it’s consequential for everyone,
Christine Brooks 56:34
Of course.
Megan Gilmour 56:35
And so, if we think about those big challenges and vulnerabilities facing kids with FASD at school, would you like to share more on what you think could be different? What’s happening now to address the challenges, and is it enough, or what should governments know? What should schools know? What should we be doing to remedy this?
Christine Brooks 57:01
Well, I think we’re stuck in that sort of children are being misunderstood. They’re being punished and excluded. This is not the way to solve the problem. You know that they’re considering that they’re the problem. Well, they’re not the problem. The system’s the problem.
They have difficulty with memory and following instructions and regulating their emotions and huge issues around their executive functioning skills every day.
Megan Gilmour 57:26
Yes,
Christine Brooks 57:27
Dysmaturity. You know, if you’re in a class of 16-year-olds and your mind is working like an eight-year-old that is hard, that is pretty difficult. So, they have the social isolation and the bullying starts developing. They get very tired, as I mentioned before, often. This is a problem with the kids with FASD and a lot of sleeping issues.
So, all of these things are huge challenges. They’re challenges for the person living with FASD, but they’re also challenges for all those interacting with that person throughout the day. So, they’re massive, they’re big, and they’re not impossible to sort out if they’re addressed properly, and it can be helped.
Megan Gilmour 58:07
Yes, well, we’re so grateful for your work and obviously the National Organisation for Fetal Alcohol Spectrum Disorder in Australia. So, before we do a shout out, which we absolutely will to your organisation I just wanted to give you the opportunity to say anything further that you wanted to say about school quality of life. If you feel like you’ve said everything you wanted, we can move on to our final call to action.
Christine Brooks 58:44
I think I could talk all day about this, simply because I’ve been a teacher for so long, and also because I’ve had so much to do with kids living with FASD, and I see what they, what they have to go through.
I want schools to become aware and really just build up that knowledge so that you can support these kids. Teachers need to really understand them and meet the child where they’re at.
Don’t expect them to come to a level. You go to where they’re at and work from there, working on their strengths, as I said before.
These kids have got a great sense of humor. They’re so much fun. We laugh and laugh. I’m not saying we don’t throw furniture around and have our moments, but really, it’s just a lot of fun because they’ve got a great sense of humor, and she particularly has got a wonderful sense of humor.
So, you know, you need to make allowances. You need to understand that it’s not spoiling them, it’s just helping them get through their day.
So, looking out for them, making sure that you see the triggers that are going to set them off. I mean, it took us a while to work out that going over to the shopping center, and especially going into JB HI-FI, you know, we were sure to have a meltdown following that because of the visual overload. If you know these triggers, you can avoid them, and that’s really helping them and keeping them calm.
So not expecting them to change, but looking at how you can change, really, that’s so important. So, there’s a few things. I mean, there’s a lot that we can do, but as a parent, as a carer, as a teacher, I think it’s really important that we start looking at the child through the eyes, you know, of them, with their first day.
Megan Gilmour 1:00:22
So yes, that’s a wonderful point to land on. And obviously, underneath all of that, you have a great love for children that’s really obvious, and a great belief in, in what, the way that children can develop, and how much of a difference we can make to that pathway.
I’ve really taken that away, and it’s incredibly inspirational to me as well, to in the work that I do, to meet you and have listened to you and your attitude towards it all, and not just FASD, but also, you know, I can just picture you as that teacher in the classroom and kids just having a great experience of learning, which is gold.
So, as we close, I want to give you the opportunity to give your call to action for Fetal Alcohol Spectrum Disorder in seven words or less. What would you say is your call to action?
Christine Brooks 1:01:09
I suppose, support FASD awareness. You know, today’s international FASD Day, so we all need to make sure that we support it and spread the word and help with the understanding and prevention. That’s our game, I think.
Megan Gilmour 1:01:37
Yes, wonderful. And so, a big shout out to Christine. Also, a shout out to National Organisation for Fetal Alcohol Spectrum Disorder, FASD, Australia, and you can find them at www.nofasd.org.au [https://www.nofasd.org.au]. Thank you for joining me today, Christine, it’s been a wonderful conversation.
Christine Brooks 1:02:02
My pleasure. Thank you. Megan, am I allowed to say one more thing?
Megan Gilmour 1:02:05
Yes
Christine Brooks 1:02:06
On our website, we offer support groups and training webinars and a helpline that runs every day of the year. So please, if you’ve got any questions, give us a call.
Megan Gilmour 1:02:19
Yes, amazing. And, you know, give generously over there as well, because this organisation is doing such great work, and we’ve heard firsthand how important that work is and what a difference it can make to a child’s life and a family’s life.
Megan Gilmour 1:02:35
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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