Aggressive. Manipulative. Lazy...?" Why We're Getting FASD Behaviour Wrong

Antonia Rathbun Lindsey, an internationally recognised art therapist and FASD specialist with 40 years of experience, joins Dr. Inyang Takon to reframe how we understand behaviour in children with Fetal Alcohol Spectrum Disorders. Drawing on her own experience as a late-deafened clinician who learned to adapt her own body, and her years working within an Afrocentric family reunification programme, Antonia explains why alcohol exposure in pregnancy disrupts neuronal development, why children with FASD often can't "read" their own distress (interoception), and why what looks like defiance is frequently a nervous system stuck at threshold — what she calls a "bristle attack." She shares concrete, play-based strategies for helping children regulate and shows why "workarounds, not stops" changes outcomes for families.

Key Takeaways for Parents and Teachers:

• FASD is caused by alcohol exposure in pregnancy — it's the most preventable cause of intellectual disability, and no amount of alcohol during pregnancy is considered safe.
• Children with FASD often struggle with interoception — the ability to sense and signal their own overwhelm — so meltdowns are often prolonged "episodes," not typical tantrums.
• Labels like "aggressive" or "manipulative" often describe survival responses to sensory overload, not the child's character.
• Physical, sensory-based interventions (deep pressure, movement, rhythm) can help a dysregulated child re-organise faster than verbal redirection alone.
• Supporting these families means acknowledging intergenerational trauma and cultural context — not just clinical symptoms.

Resources Mentioned:

• Parenting Your Porcupine: A Toolkit for Children with FASD, Other Drug Effects, and Neurodiversity by Antonia Rathbun Lindsey — available via Books.by (English, French; German translation in progress)
• The Lewis Protocol
• SAMHSA's FAS Centers for Excellence
• Canada's British Columbia Ministry of Education
• State of Alaska Drug & Alcohol Services

Connect with Dr. Inyang Takon:
Website: www.drtakon.com
General Information for Parents: www.school-doctor.com
Questions? Email: eim@drtakon.com
LinkedIn: Connect with Dr. Takon
Subscribe: Ask a Developmental Paediatrician
Read: Braindiverse Substack
Guest enquiries: podcast@drtakon.com

Transcript

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SPEAKER_00 0:03

Welcome to Early Intervention Matters, a podcast that helps parents, teachers and health professionals understand the diagnosis, treatment, care and support of children with autism, ADHD, threats, and other neurodevelopmental challenges. By sharing stories from parents and professionals in the field, we hope to make sense of what can be an overwhelming topic. Early intervention is crucial for children with developmental difficulties. Yes. Early intervention matters. And now here's your host, Dr. Inyan Tagon.

SPEAKER_01 0:56

Aggressive, manipulative, lazy, unwilling. Those are the words children with FASD hear about themselves. And today Antonia is going to tell us why almost every one of those words is wrong for the children. I'm so pleased today to have someone who is an expert working with children with FASD and behavioral differences, someone who has worked to understand the behavioral differences in children with FASD and has used a different approach with trying to understand the children. We connected on LinkedIn. And the minute she told me she worked with FASD in an African an Afrocentric population in America, I was onto her like glue. And we haven't stopped chatting since then. So I am so pleased to have this lovely, lovely lady who has agreed to come and share her experience with us. Welcome, Antonia. I'm so pleased to have you on Early Intervention Matters podcast. I'd like for you to introduce yourself and tell our audience about yourself. Thank you.

SPEAKER_02 2:30

Thank you so much, Dr. Takong. I'm honored to be here with your audience. And your producer asked me to say why I'm moving my hands all the time. And part of it is I forget that I do it because I can speak, but I'm deafened. I'm like deafened. I live with a genetic disorder that took away my hearing and left vestibular symptoms. And as part of that, I adapted by learning how to sign at a doctor. We I lived where I was a clinician and working. We lived where there was still a deaf school. And he said, You're losing your hearing. You should go and you should learn sign language. And he was right. It was incredibly helpful because I was losing ability to use, I couldn't dance with my legs anymore, so at least I could dance with my hands. And for me, it was compensating and it was learning to adapt. And the reason I say this is because I have worked my whole career with children with fetal alcohol spectrum disorders and other prenatal neurotoxin effects, drugs, fetal hydantine, toluene, all kinds of neurotoxins. And what we see is that when the body is changed, living in a very different neurophysiology, we can still adapt. We can still adapt and we can overcome and we can cope. And being able to bring that about is based on our strengths. And so many times, you know, I so much appreciate being a guest on this show. And the fact that you opened you opened the conversation talking about manipulation, aggression, the stereotypes people have of what we see in terms of symptoms. And today we'll talk about what's going on in the body that makes it very hard for kids with neurotoxin effects to handle daily stress threshold the same way as we might expect for their age. Because really what we're dealing with is an unevenness of stages in terms of how their bodies are metabolizing the surrounding environment at home or at school. And living in a very different body myself, I had a the good news and bad news about that is that I'm very, very visual and I was trained as an art therapist and then became a family therapist and disability specialist. And because of that, I worked from a habilitative perspective. Instead of trying to extinguish behavior, I worked at where is the neurological functioning, and then what do we do to support the strengths and find workarounds so that the child can preserve functioning as best they can, given that they have a different stressful threshold in the body than other children do. And how can we build on the best? How can we build on their strengths and capacities? And so doing that from a visual perspective, I was a little bit uh I was in a frail body, but but with a brain that's a little bit like an x-ray machine, and I wouldn't notice, I would notice subtle signs about how they were moving or their facial expression, whether they were holding their breath or not, things like that. So we'll talk a lot about reading the body before we get to how to put that into words with a kid and how to go back and forth and exchange information with them. Because what I found was that the more struggle they had physically, the less their words worked. They might be able to talk the hind leg off a dog about certain things, but they're they had a lot of difficulty with interoception, the ability to read what was happening in their system and signal somebody that they were in distress, that they were stuck or getting overwhelmed or getting overstimulated or over excited, and they had no way to know that adults couldn't read them very well. They didn't have any way to flag anybody and say, I'm stuck over here, I'm having a bristle attack like a porcupine, I'm coming unclued. They had no way to signal that to anybody, and so we'd see meltdowns and implosions and explosions that weren't just tantrums, they were more like episodes, prolonged, not typical tantrums that you know a child of age four could could get upset with somebody and have a hissy fit and then kind of get over it inside of 20 minutes, 10 to 20 minutes. These children didn't have that kind of casting. When they got stuck, they got really stuck and they couldn't unstick themselves very easily. And that's where my work came into the picture.

SPEAKER_01 7:31

Thank you so much. I love your description and it just resonates a lot with, you know, when I see the children in the clinic. It just resonates with what is being described to me by families, is that you know, when they go, you know, it's it's almost it's almost like it's so difficult to get them back, but they just cannot express to people why, you know, what is really going on with them.

SPEAKER_03 8:00

They're really they're stuck. Yeah, so it does.

SPEAKER_01 8:06

And just I think I like that phrase that he used that people should understand that when they get stuck, you know, these behaviors can just go, and it's how we deal with the situations because sometimes the responses by the adults around them could make that worse. And I think that's what you've seen as well, depending on, you know, it's the reactions.

SPEAKER_02 8:36

Well, as you're saying, the thing is that I I had the good fortune of working in different communities. I was invited to participate in an Afrocentric treatment program to provide the mental health support alongside of all of the recovery work that was happening with pregnant and postpartum moms who were reuniting with their older children and having babies and and taking back their families. We were, it was a family reunification effort. We were trying to keep families together. And it was run, it was a minority program, and it was very strange to to, you know, why they would want someone who looks like me to be part of an Afrocentric treatment program. You wouldn't, you normally have someone like me there necessarily. And I'm the mother of I'm the mother of a native child. And the women in the program were they were they were African American, they were Latina, they were native, they were they were everyone from everywhere, but but but the model was Afrocentric. In order to address trauma that had happened in these communities and to to build on the strengths of families. These were matriarchal families, not typical, these were matriarchal families. The person most important in these families was the brother of the mom, not necessarily the father of the child. It depended on the family system and being sensitive to these to these needs. It was very important for me to be a learner there and for me to understand what the moms wanted with the children, and to be able to find a way to help them reconnect in terms of the child's authenticity and in terms of attunement and attachment for the parents. And there were so many ways in which the family was was working hard to stay together. The grandmothers were helping, the aunties were helping, everybody was in there helping, you know, but the children were were a little tough to read because as you said, the children would get stuck. And and and moms would be trying to have their child calm down. So they'd they might admonish the child and they might try and calm them. And the children, the children would would, I use the image of a porcupine because I learned that from a child, that his system, it was it was an Ojibwe boy, and his system functioned a little bit like a porcupine. He'd get bristle attacks when when stimulation was too much for him, his whole body would just be at threshold from sounds and visual input and people near him, too much noise, all kinds of things that were part of the routine environment and that other children could adjust to, but he couldn't adjust to it. For him, it was like being in a waterfall of stimulation that he couldn't exit. So he it was just having a thundering load of input and he'd fatigue. And when he'd fatigue, he'd either explode, have bristles, he'd get bristle attack like a porcupine instead of a puppy. Mom wanted him to calm down like a puppy. She couldn't, she couldn't just say, no, do this, do this, calm down. It didn't happen. And he'd when he had that going on inside his body, his face became very stony, like a child with autism. The more overstimulated he was, the less expressive language he had, and the less he could signal anybody that he was stuck. He'd become gay subversive, he couldn't look people in the eye. And his mother, I mean, in Africa in the African American community where I was, the moms had a great technique that they'd learned from their grandmas, and it was the look. It was the look we know the African look. And the look says, now now, now now, don't cross me. I'm I'm the boss here. You need to pay attention, you need to settle down. It was very effective for many children, but it didn't register with kids with this kind of condition, and so they get the look and they wouldn't look, they wouldn't meet the eyes. And moms would feel very disrespected by that. And it was hard because they were trying to say, tune in to me, because I have to give you information, I have to give you instruction. And so it was perplexing to them and just and it's unnerving and unsettling to them. The moms felt sometimes disrespected, or you know, I'm the mom, why won't he accept my guidance? Why won't he? I'm trying to raise him right, you know, and we can totally understand that. Add upon that the fact that people who had looked like me out in their school system or wherever they'd grown up had been judging them if their child wiggled too much, had been making assumptions about the family that were racist and oppressive and terrible. And moms felt truly, truly cornered by the court. I have to make my I have to get my child back. I have to make him behave. I have to prove I'm a good mom. I, you know, I'm I'm really I'm really under the spotlight here, and this is hard. And you know you can appreciate that because I mean, look at what the system was doing. It was saying, you're on your last chance here. I mean, what a what a bind. And nobody was acknowledging the trauma history that had been intergenerational in the family.

SPEAKER_03 14:27

Yeah.

SPEAKER_02 14:28

So I think ways to both calm and organize a child who was a little hard to read, yes, heal from the fact that people were scrutinizing their every move in a system that was stacked against them to begin with.

SPEAKER_01 14:44

So I'm just going to go a bit backwards because some of our audience may not be familiar with FASD because it's still a very under-recognized condition, neurodevelopmental condition. It's still something that we're trying our very best to keep raising awareness because we feel that there's so many that are not recognized or identified or diagnosed. So, Forbert, would you like to tell our audience about FASD, just defining it and what happens in FASD?

SPEAKER_02 15:19

Fetal alcohol spectrum disorders are directly the result of alcohol exposure during pregnancy. And because of the alcohol, which is a solvent, as we know, it's used in laboratories to sterilize surfaces. It kills things. And what it does in the neuronal progression of development of a fetus when a child when a child is in utero, is it stops and slows the proliferation of cell development that makes all the organs in the body, it makes the entire body. I mean, it affects the brain, it affects other organs, depending on on how much alcohol and when and where the dose is taken inside the pregnancy, it can affect, it can have it can have slight effects or it can have very, very dramatically severe effects on the neurophysiology of the developing baby.

SPEAKER_01 16:17

Yeah, thank you. So for our audience, um just like Antonia has described, fetal alcohol spectrum disorder is a result of prenatal alcohol exposure. That's one thing we are so sure of that that's what causes it. So there is a definite cause when it comes to FAST. It's the most preventable condition that causes intellectual disability and causes difficulties and disability. And as Antonia said, although we're looking at the brain, it can affect the body. Antonia has described what alcohol is, it kills, it kills cells. So if you can think about what alcohol can do to surfaces, think about what it can do to cells. Unfortunately, the fetus does not have a way of clearing the alcohol when the mother is exposed or take drinks alcohol during pregnancy. And so the alcohol which the mother takes just goes straight through the placenta to the fetus and then affects the brain. It affects the brain development. In the first few weeks of pregnancy, the first few months, you're having structural uh changes taking place, your brain is forming, and then the neuronal bits with dimension is the nerves continue to develop throughout the pregnancy. So if a mother takes alcohol and you know she continues to drink, then there continues to be damage going through. So unfortunately, we don't know how much, we can't talk about amount and how much is needed to cause the problems. We, especially in the UK, we say no alcohol during pregnancy because that is the only way that you can be sure that you are not at risk. And that message needs to go up because I a lot of mothers, many mothers, do not start the journey wanting to cause harm to their child. Many people have, unfortunately, you know, when they have drunk the alcohol, have not been aware that they were pregnant, they didn't know. So that's one thing. It's a sensitive area we need to be sensitive with mothers because many of them did not set out to drink, many of them have been victims of situations where they found themselves drinking and didn't realize when they were pregnant. So we need to look at a supportive way of supporting the mothers and helping people understand what happens to those infants when they're born at their at risk. And for some of them, people may not have even diagnosed the children with FAS. It's only when you dig deeper into the history and then you find out what would have happened. And as Antonia has said, some of the mothers have experienced a lot of trauma, and from things like trauma can lead people to drinking and taking substances, and then so we we need to understand what happens. So the children can have developmental delay. Sometimes the babies come out looking fine, and people think there's nothing wrong, and then the development goes on. People think, oh, they're fine, they're doing okay, but the behavioral and the emotional bits is one of the big, big things that can happen for people who don't understand, would just think it's just behavior. When I started, I said aggressive, manipulative, the names that the children have carried for so long, names that have been given to them by other people, by schools, by people who don't really know about their brain biology and what's happening. And that's why um it's so important to understand this. One of the things that made me bring Antonia on as well was that the conventional way of people looking at behaviors in children does not work for children with FASD. And uh we will be talking about some of this as well, Antonia. So, what got you interested in working in this field?

SPEAKER_02 20:42

Well, I was I was trained as an art therapist, and I came into the field of art therapy working with children who'd been sexually abused and trafficked human, who they'd been referred by the police department because they'd been children who had been identified as having been subjected to pornography and they'd been violated. And I was invited by a trauma-focused therapist who was not an art therapist, but knew about art therapy, and she noticed that many children who had been traumatized had difficulty explaining what was happening in their in their experience. They they would become, they had what they called wordless terror. They would become stuck and unable to sometimes they'd be swallowing, they'd they'd they their breath would catch, they they would become sort of frozen in remembering things that had happened to them, and they couldn't speak about it very easily. And so she felt it would be helpful to these children to use art in the recovery group that she ran for them. And I was invited to come and help with that. And so that's how I got into the field of art therapy, and then from there I I quickly began to work in mental health and addiction. With families who were recovering from trauma histories and where alcohol and drugs had been part of how they'd tried to reconcile trauma. It's a very cheap drug, you know. I mean, to go and have a drink is a very cheap medication compared to the stigma of, oh, go and try and find a psychiatrist or try and find a therapist and things like that. And many and many families are of the belief that, well, especially in those days, that only people with hospital-level psychiatric problems who go into asylums or are in hospital-based programs, those are serious illnesses. But the rest of this is just hardships in life. And you go down to your corner pub and and you try and change your thoughts by having a drink at happy hour with people and this and that. And so families are families are subjected to the same messages by the alcohol industry that we all are, which is that it's a fun, sexy thing to do in a way to relax. And then some families are not just dealing with that. They're dealing with with history of hurt and loss and hardship, for which that's both a temporary medication, but ultimately a poison, and they get stuck there and they have a hard time unsticking themselves. And then things begin to unravel in the family because of it. There are hardships in the marriage, there are hardships for the children. And so I was dealing with that when I discovered that, in fact, this wasn't just about the postnatal environment. There were kids who were functioning very differently because of what had happened to them, because of the prenatal exposure to the neurotoxin as well. And that's when it really hit home to me. These families are needing very different supports. And because in training as an art therapist, we deal with stroke rehab, we deal with dementia, we deal with a habilitative orientation towards supporting people whose bodies are functioning differently because of medical conditions, because of brain trauma, many things. And so it was very natural for me to say, well, wait a minute, if this is prenatal exposure and it's caused brain injury, we don't have a baseline to go back to because the child we couldn't see what that would be like without the alcohol exposure or the neurotoxin. So what we're doing really is we're looking at a closed-head injury scenario for a child who's born with a diffuse closed head injury profile, who have subtle differences in how in how they're relating. And we if we look at the information, for example, the Lewis Protocol, which looks at postnatal neonatal abstinence syndrome and withdrawal symptoms in neonates. What we see in little babies is that they can have differences in in how they feed. They can have weak suck. So they don't latch as easily when you're trying to nurse them. They have uh altered tone, they are hypotonic, they have slack tone in their entire body, and so they're they're either kind of white, come, they come out kind of wired and and skittish and very tight, hypertonic, or very low-tone. And so, so it's a little bit like raising babies who are either completely shrieking and inconsolable and very stiff or kind of limp and overly relaxed, like a stewing chicken, where it's it's hard, it's hard to find a middle ground with them to be able to do the sorts of things we do with young infants to help them organize their movements towards the midline, to be able to focus on the parent, to be able to habituate to stimulation in the environment and to modulate their physical responses to it. So we begin to see those things early on. And even early on, parents were dealing with things like their shrieking. They would go, the little children we saw in the in the program I was in, the alphacentric treatment program, the little kids would go from totally asleep to waking and shrieking like a car alarm. It wasn't a typical cry with the typical ebb and crest of a plaintive sound slowly building to desperation. It was like a car alarm that would go off and a cry that had unusual sound parameters to it. They call it a neurocry. And any foster parent or adoptive parent or biologic parent who's been up against that kind of shrieking, the little children are really, really, really suffering. And they go from they grow from zero to 60 miles an hour. And then they don't, it's it's hard to get them that it's hard to get them dialed in enough to be able to feed and to nourish them. And so parents, families were dealing with these kinds of things that required a multidisciplinary team, and I was part of that team to try and find solutions for babies who couldn't calm easily or who fell asleep and couldn't rouse easily. And so the window of interaction between them and their mothers and their siblings was was tighter and needed different strategies for how to bring them in alignment with one another. It was it was difficult that way. And then as they were older, by the time they're three and four years old, people were saying things like manipulative or aggressive because they they didn't signal other people what their needs were the way we would expect when speech comes online.

SPEAKER_01 28:02

Thank you. And just for our audience, what Antonia has been talking about is um, you know, experience with babies who have been exposed to maybe maternal drug use during pregnancy, when those babies come out, they usually have something we call neonatal abstinence syndrome, um, where they get very irritable, almost shrieky cry, like Antonia described. They're almost like when you touch them, they're very um, very irritable. And they they the cry. Antonia took me back to my neonatology days when I worked in the in the woods with with the babies who would be crying significantly, and that cry would be quite a loud, shriek cry. So the babies are unsettled, and so you can imagine a baby who is unsettled continuously, and what that sounds like. So the children who are exposed to alcohol, maternal alcohol, sometimes could have such presentations, and for us to remember that sometimes babies, children could have been exposed to more than one thing, sometimes the norm the women were using, and that's what tends to happen a lot of the times, is that they're exposed to both a lot of the time. So, um, so they they've had quite a rough start to life if we think about it. They've had a very, very rough start to life, and for many of them, the journey is up and down, so it usually is not easy for them or their parents as well, who have had to go through sometimes. The parents have been through very difficult situations as well in in looking after them. It's it can get quite difficult, and it's not uncommon. So sometimes when we talk about fetal alcohol spectrum disorder, sometimes people think it is uncommon. No, it's not uncommon, it's just that we've got the same in England as well, in the United Kingdom. We have so many, we have children who have not been diagnosed. Not because the condition isn't there, but we do not have the services, they are not there to support the children, and the services there, we're still going on with the awareness for clinicians and other people to recognize the children, to recognize, to look and ask the question about exposure to maternal alcohol and look at the profile of the children, so that once we identify them and we begin to intervene early, then we actually, you know, step in before all those behaviors become very protracted. I don't know what you think, Antonia, about that, about the earlier.

SPEAKER_02 30:51

What I find is early intervention is crucial. And even with early intervention, the thing that's so hard for the families is that they're hoping the child is going to grow out of it. And yet, what I saw, because I followed the children from their birth families on into sometimes those families were united and they could stay together, and other times the children were adopted out, and then I followed them in into foster care and adoption. I followed the children wherever we found them. I found I followed them. And we and what we we saw was that when it when you start out with a neurophysiology that's touchy, like a little touchy carlon, or like that that porcupine kind of problem, where they have a central nervous system that's more fragile, that's more vulnerable either to spikes of agitation or to folding and collapsing in response to stress threshold. Collapsers and the bristlers, you know. That tendency, that vulnerability, we call it a diathesis in the body, a vulnerability that makes that body different to in relation to daily stressors. And it doesn't seem to change over the course, it stays there throughout the course of one's life. It's it's a difference, it's a vulnerability in the body, and managing stress threshold and learning how to kind of map out what the supports are. If if you imagine that a child with asthma has always wheezed, and if that's just what it was like to intake and exhale, they don't know that's wheezing. To them, that's what breathing is. It's just how that's breathing because that's all they've ever known. And it's much the same with someone who has a different stress threshold for sound and noise and tactile stimulation and movement stimulation, who is like a touchy car alarm. Their body has always been that way, it can never exit that thundering waterfall of stimulation. So that's just life in the body to them. And they don't know that it's not that way for you or for me or for another adult. If an adult knows when they're supposed to wake up, when they're supposed to go to the bathroom, when they're supposed to eat their breakfast, when they're supposed to go to school, how can they not know when they have headaches from that, when they have fatigue from that? How can they not know that the child is in distress? Well, the child isn't showing signals that hail us to say, you know, we're looking at brain and behavior often instead of the lungs. Now, if we if we hear the lungs wheezing, we suspect, okay, that's asthma, we get the child to the pediatrician. With the brain, it's a little harder. With behavior, it's a little harder because we're looking at what do most children typically do. And many of these kids can do a lot of the things typical kids can do for part of the time, but then for some reason, in the course of a routine day, things get stuck. They get stuck, and when they get stuck, they don't get back on track easily. We talked a minute ago about the episodes. What looks like more tantrums than other kids, but it's actually episodes of that of that rigidity in their in their difficulty-changing mental set from one activity to the next, or transitioning from one set of stimulation, like let's say they go, they take a bus to go to school. They'll have trouble, they may have trouble leaving the house and getting on the bus, and then the bus is making a lot of loud sounds, and by the time they get to school, they're absolutely overwhelmed with the level of sound they've had, and then they have to change environments again and go into a classroom, and there's all this noise in a classroom, and but by the time they get there, they're trying to figure out where to put their their coat and their backpack, and someone comes too close of them, and they reach out and they strike the other child because they're misreading the fact that the other child is close for something that's a threat. Their brain is reading the extra stimulation and already alarmed and alerted and beginning to be to have defensive behavior instead of brokering it with words and saying, Hey, what are you doing? They're wordless and they're and their hands are coming out, or they're striking the other child, or they're pushing the other child because their language is offline. The more stimulated they are, the less they can use their language. Things like that. And that behavior is going to look, that's where you know they earn that label. Oh, he looks aggressive. Well, he might be overly defensive or on offense because he doesn't broker it with speech like other kids, even though he can speak. You ask him, What do you want to eat? That he points to toast, that he points to cereal. But he's not using speech in the same way other speaking kids are using speech. And when he's overstimulated, it's compressed or it's offline. Or or he has subtle speech and language difficulties like circumlocution. He's talking all around the plate, but can't get to the point, don't do that, please do this instead. He can't identify what to do instead. And so then things are going physical when they need to be brokered in words, and people are very confused by that because they've taught the kids social skills. They say, Here's the polite behavior, and the child will nod like this or register, okay, I hear you talking, but not necessarily know how know how to operationalize the words they just heard. When they need it. If you say, here's the rule, what's the rule? The child can echo back the rule. If you say, show me the rule, the child may not be able to tell you or show you. They may be able to say it, but not be able to put into operation what it means. And that's very perplexing. That's very perplexing for adults. What could cause that? Why is that happening? We just explain it, we just talked it through. Why can't he do it? You know, and have a child who's four or five who's learned polite, courteous behaviors, wait in line, wait your turn, but then they can't do it. They're turning around and they're batting someone next to them, or they're fidgeting in line. And other people are saying, keep your hands to yourself. We don't touch other people in the line, we wait our turn. But you have a body whose primitive reflexes haven't integrated the way other children. They can't not fidget. They can't not need motor support or stimulation in order to calm and contain. They might need a heavy, they might need what I used to call a heavy helper, a heavy helper in their backpack. They might might need weight in their backpack to be able to calm and contain, to give their body some heavy work for the trunk and stability of their core in order to not bat people with their hands and arms or be touching the wall or touching another child. And those are counterintuitive kinds of things. Parents don't typically have strategies like that for a child that they can talk to and say, Do you understand me? But I thought we talked about the rule. You know, that's it's not a typical intervention for how to contain behavior. We would typically take and put the child in a timeout or things like that. Sometimes you take these children, you put them in a timeout, and they're kicking over the chair, or they're they're they're picking holes in the in the the wall, or they're, you know, they're more dysregulated and they can't calm because what their body's needing is different support in order to calm and recruit.

SPEAKER_01 39:14

And so it's not surprising that a lot of adults misunderstand their behaviors, isn't it?

SPEAKER_02 39:21

They've become progressively punished more and more when actually what they're experiencing are neurological gaps in the sequence of being able to calm and organize their behavior and find a proportionate fit between what the environment is demanding and what their body needs in order to be able to do that bite-sized chunk of skill. Yeah. So it's filling in gaps because they have very uneven performance. They be may be able to talk a blue streak. But then what do you do when they can't act upon it or they don't recall the sequence to act upon it in a way that's been agreed to. At home in school, it's very perplexing to families.

SPEAKER_01 40:12

And and I think this is one of the things where um the schools, when they don't understand why they come the children sometimes have this profile, they find it difficult to understand those behaviors. And sometimes they the children are just treated like any child with any behavioral difficulties, and they use the same approach. So you've talked about sometimes it would skip them back at school and say you're not having your break today, you're not having your lunch break today as a punishment for a child that actually needs the movements and needs movement and maybe needs heavy work, maybe needs to help the janitor push buckets or carry heavy things in order to feel helpful and to calm and reorganize because they need so much more input to the proprioceptive system than anyone would ever imagine.

SPEAKER_02 41:04

Some of the little kids need, I mean, we talked in an earlier conversation about the use of weighted blankets. Occupational therapists use weighted blankets with children who have disorganized proprioceptive and vestibular responses at times. They'll use increased proprioceptive load to help the child know where their arms and legs are in space and give them the kind of dose of stimulation and heavy work that they need. If you think for a minute about how, you know, how some people calm down by lifting weights or doing martial arts, kickboxing and things like that. That's what some people need in order to feel calm and organized and and and content. And other people need swimming. You know, they they they have different stimulation preferences, but all of that is information that's coming into the body in order to help the body be in the just right moment to be able to handle the dose of social stimulation that a person has to deal with, or back and forth one-to-one interaction that a person has to deal with. Because we all have we all have a little bit different neurochemistry and and neurophysiology in terms of how our brains read the world and how we interact with it. And these children just have a much more different neurophysiology than people expect because they look typical. They're very beautiful, sweet children. They're lovely, they're lovely, and they don't necessarily have a limb mail formation or something that would cue someone else on the outside. My body is different, it's not functioning like other bodies. Yeah, you know, so it's it's a little harder to read.

SPEAKER_01 42:57

It is, and that's why I think the education needs to go out, the awareness needs to be more, the uh people need to understand these behaviors, especially the schools. I feel that schools is one huge place where these children spend um a lot of time. So trying to make them fit into the curriculum that is existing is usually not helpful for them because it just causes um a lot of stress for them. Just like you've described, the more they get dysregulated, the more difficulties come up with their behavior, and then they can't learn. So we defeat the purpose of trying to keep them in a space and make them comply with the school rules and everything the school is doing. But their bodies, like you said, the neurophysiology is different.

SPEAKER_02 43:47

Until we can get their body back, we can't chain any other skill on. Yeah. When we can get their body back, for example, a little child, there was a little child who was. Between three and four years old, who uh who would who would bolt. Nobody wanted him to bolt from from the classroom. His mom didn't want him to bolt out into the street, but he would bolt. At the drop of a hat, someone would call him, he'd bolt. And what he was what he was really, he would get, he would get a kind of a little wild look in his in his eye, and then he would bolt. And because we were in the residential program of the hospital, and we had to be very concerned about children not eloping and getting out into the street. You know, there was traffic out there. It's dangerous. But this little boy, what he needed was he needed a lot of stimulation load. And he was one of those kids who was who was physically, he was a kinesthetic learner, he was really a physical learner, and he was absolutely darling, and he was strong. He was very, very strong. And this was both delightful and difficult for his mama because his mama wanted him to calm down and settle. And so she'd use a sharper tone with him to try and get his attention. Well, the minute he had hyperacusus, he had hyperacusis, he had oversensitivity to sound there with his ears. So the minute he'd hear that tone, he'd bolt even more. And so then the chase was on. It was very difficult. So one time I stopped him at the door, I managed to intercept him and I grabbed him and I lifted him up and I fastened him onto me. And he fastened on with his arms onto my arms and I supported his head, and then I flipped him down upside down and I began to bob him up and down. I began to bob him up and down because I at that time I still had mobility, and and so I bobbed him up and down, I bobbed him up and down. And what happened was I felt his body both latch on and I felt his his chest expand. And his face, when he looked at me, he got this wide look like this, and he broke into this big smile. And he was elated. He was elated. And so I bobbed him and I did about three to four minutes of bobbing him up down after. And then I took him and I put him down on the ground hard on his feet. And with me, we both got down in sort of a squat stance, you know, four arms on four arms, a squat stance like that. And I said, Let's jump. And we jumped, and we did ten hard jumps. I said, Let's break the floor. We broke the floor. Well, you can't break the floor, nothing can hurt anything by breaking the floor. But he needed that deep, deep jolt of information from the soles of his feet up through his spinal cord. And his face lit up. He was happy, he was attentive, he was calm and organized, and he was paying total attention. And I taught his mom that technique, and he began to seek it, and he stopped bolting from her, and he sought that stimulation, big stim load with his mama as an attachment game. And she began to understand that what he was was he was her little hulk. He would help her with all the heavy things. If she needed him to lift, she got his help, and he became her best helper. He became her best helper. And he be he was tender towards their new baby. He wanted to be a strong, helpful big brother. Now, this was the one who who had speech delays, and so he had been he had been putting his hands on other kids, pushing, shoving. He was trying to say, push me, bob with me, let's rough house. Trying to get the stimulation load he needed for his body. Because he didn't have words to be able to broker that to say, I need big squeeze and I need big stem. He didn't have a way to say it. The other thing was he had slack oral motor tone, and so his speech was hard to understand. He was speaking, he had language concepts, but he had articulation problems. And so the speech therapist came in and she said, okay, we'll do another game with him and his teachers and his mama. We'll have him take one of these rather round, slushy straws, they're short like that, cut them into little pieces. So they're kind of thick like this, and you vacuum up applesauce like that. And so he was doing oral motor work, but through play. Through play-based intervention. We were using play-based intervention to load the things that his body needed to be able to have workarounds for where things were harder for him. And it wasn't that speech was always going to be his first go-to, showing someone, moving heavy things, helping them physically was always going to be this little boy's forte. He was never going to be the kind of kid who necessarily is going to love to read out loud and love to do all that kind of thing. But if you needed a paramedic or a firefighter or someone to help build things, this was your guy. You know, he liked to do big work to help people. And I I saw that happen a lot where people would imagine, well, no, if if he can't, if he's if he's pushing another child, he must be terribly aggressive. He wasn't terribly aggressive. He was very he was physical, not aggressive. You know, and so the words we use and the way we label what we're seeing makes a big difference. And really, if we think from a neurophysiological perspective, a neurodevelopmental lens. I mean, I'm preaching to the choir here. You're the one and you're the expert in this. And what I was doing was saying um to families, so neurodevelopmentally, we do this to build on his assets. We're building on his assets. He loved little Sally Walker. He loved the, you know, the game Little Sally Walker. You know, it's a great, it's a great thing. The families were always playing with their kids, they were always doing little Sally Walker. He was wonderful, he was a dancer, he could he could shoot hoops. This kid was great, but he was being looked at as if he was dangerous.

SPEAKER_04 50:38

Yeah.

SPEAKER_01 50:39

You know, so this is this is um, and thank you so much because um it gets on to the other parts of the of our uh talking in the sense that when um families work so try very hard to get a diagnosis, the ones that get a diagnosis, they get to the point of we've had the diagnosis, and obviously what we do see is you know no support, and many of them, not many of the families do not know how to manage these behaviors. You've just described a typical example of behaviors that the children have, and how you were able to advise parents and all that. So um, some of the I I use some of those terminologies at the beginning because that's some of the things that parents have said to me. You know, he's aggressive, he's you know, but um manipulative and all these things I've heard from several of my uh of the children I look after, and we don't have the services in England. I wish I could be saying we have services. We don't, we can't even get therapy services for them, we can't even get any of those services.

SPEAKER_02 51:51

So And they can't in North America now either. They can't in North America either. So, really, we're at a time where people are accessing podcasts and learning how to build skill sets from from mapping what I call making a map of three key struggles and three key strengths. And I teach that in my book because what I find is that families have a lot of data, but they don't call it data, they call it stories about these are actually episodes of struggle where the behavior is is bigger than a tantrum. It it goes on longer, it's longer, it's stronger, and it's it's sometimes more physical or more more tactile. Kids will be doing tactile things. Other kids might be, you know, crying and things like that, but these kids might be they might be picking holes in a mattress or gouging holes in the wall board or doing physical tactile things that other kids don't do. They might be they might be um squeezing themselves between the box spring and the mattress of a bed and thrashing around in there, trying to get that that proprioceptive compression. So what would be your interesting things, yeah, the space that other kids aren't necessarily doing at the same age and stage.

SPEAKER_01 53:19

What would you advise them to do if their child has this outburst of behaviors? How do you would be your advice in terms of how they go about it?

SPEAKER_02 53:30

Well, one of the things that I did was I set my office up in a way that was very different than other therapists. And part of what I found was that the kids would would come in after school, for example, to a group for children with FAST. And under my desk, I had a half-filled beanbag chair, and I had a 20-pound weighted blanket, and I had the lights in the office in indirect lighting, and I had a rheostat on it so that kids would come in, and the first thing I'd invite them to do, because they had just come from the bus or from a lot of stimulation, they were exhausted, they were fatigued, sometimes very bristly and irritable. Depends whether they were one of those collapsing kind of kids or one of those bristle attack kind of kids. But I would let them dim the lights so that there was much less visual load for them. They didn't have overhead of fluorescent lighting that would buzz and bother their light sensitivity. And the kids who were the most irritable would want to be under the desk area in the in the beanbag chair. So I we used to say, I used swaps, not stops, and we used the phrase, a nest is best. And so I'd say, What do you need? And they'd point at the nest, I'd say, a nest is best, and they'd pop into the nest, and they'd pull the weighted blanket up and they'd be in there for 10 to 20 minutes. When they were ready, they'd shove the heavy blanket off with their feet, and they'd go to the art material, and then they'd use the art material, and they'd show me what the weather had been like that day, meaning how their day had been at school. How was the weather today? And they'd and they'd show what they couldn't say. They didn't have to tell me, they could show it. And it was a place for them to vent, it was a place for them to let things out that they couldn't explain. And usually what would happen was after they had physically gotten things out, some would use the stair stepper and they'd pump up and down on a stair stepper for 10 minutes until they were tired like this and they were breathing deeply again. And then they would use the art materials. But what they did was they got their bodies back and then they showed what they couldn't say, and being able to show it instead of explain it to somebody was a huge relief for these kids because most important was their bodies were completely uncomfortable. Their the the little the one who had drawn the picture of the porcupine on the whiteboard, he had hand fatigue. He had neuromotor fatigue from holding a pencil and trying to write and do. And the teachers they meant well, they would try and encourage him. Oh no, you can do it. I can't, I can't, he'd say, I don't want to. Well, you can do it. I know you can. The teachers, people were trying to be encouraging, right? That wasn't the problem. The problem was he was in pain and he had neuromotor fatigue. Now we don't expect a little child in a bouncy body to fatigue. Yeah. It's a concept that that teachers are usually surprised by and parents are usually surprised by. To think about that different physiology and think, wait, so they're having headaches by the time it's 10 a.m. because of the buzzing lights in the classroom and the sound of the bus that they oh my goodness. So they're having really they're having almost like migraine-like headaches, but they never told me. They didn't tell me they hurt, and they don't know that we don't know. So they don't know to say anything, just say, I can't, I don't want to, and look away. They don't tell us their hands hurt. They may slump on the desk when they're writing or be putting their head down like that. They don't say the position is bothering me. Give me a slant board, I can handle the assignment better, or let me write on the whiteboard because the marker will slide and it's less work for my hands, and I can use my trunk and my shoulder instead of my hand.

SPEAKER_01 57:55

And just for the purpose of our audience, because I completely get the total picture of what Antonia is describing, and sometimes behaviors can be misinterpreted. So some uh people might think when they're moving like that, is it stimming? So stimm is quite different. When a child stims, it's quite different. Most times they're not distressed, it's just uh sensory movements that they enjoy doing.

SPEAKER_02 58:21

Stimming, they're stimming because that's the just right spot for their body. Exactly. So they still listen for listen to a lesson? Absolutely, they can. But we could put them, for example, on a beanbag cushion. Yeah, you know, you put them on a, you make a little, it's a very quick and easy thing to do. You can just take a couple of sacks of dried beans, three or four or five, and zip them into a little pillowcase and make a beanbag cushion. And then they can wiggle, even in a school seat, they can wiggle on the seat like this without making a big racket for anybody else. Yeah, and still they can be doing this while they're listening to the lesson. It's not disruptive, but they can focus because they're giving their spinal cord and gives them all this information so that they can digest the auditory tract that's coming at them. Yeah, things like that. And these kinds of workarounds are, you know, they're they're not the kind of stuff that we're typically taught to do. We're taught to stop a child, stop the behavior, excuse me, to stop the behavior. Sorry, not to swap to a different behavior.

SPEAKER_01 59:36

Yeah, no, and that's really important because just to re-emphasize that is exactly what Antonia has said is the typical approach for most um you know therapeutic uh interventions is they want to stop the behavior, and that's what they work on, and that's why sometimes it doesn't work for the children, because um people are expecting the conventional practices to work, which doesn't tend to.

SPEAKER_02 1:00:08

Well, and often if we if we see a child who's in distress and we try and talk with them about it, and they're already at threshold for sound, and they're losing ability to think straight, so they can't even find their words to explain. The more we talk, the more agitated they'll become. Which is it's it's counterintuitive to see their signs of distress, their gaze aversion, or they're swallowing, or they're fidgeting, and offer them something else for the body before we try and have a conversation, or offer them away like a piece of paper. Show me what's stuck, something's stuck, I don't know what's stuck. Can you show me? You know, maybe maybe they'll just scribble, maybe, maybe they'll make a picture. But in the little boy who who did the porcupine, he made that image of a mouse with bristles up, and I said, Oh, it looks like a porcupine, and he went like that. And then it took about a minute and a half. I just waited. I didn't look directly in his face, I just waited right next to him. When we see a kid who's gaze aversive, a child who's gaze aversive, we don't try and focus in eye to eye. We we stand next to them like two guys in a truck who are about to say something important. They're not gonna look at look at each other like truck therapy. Oh, I'm standing next to him, and so I side with him. And it took him about a minute and a half, and out came the words, it was a hard day. It was a hard day. Now that's a very brief phrase for a child who is nine years old to barely be able to get words out like that. That was that was a big delay. That's a long latency in spoken communication. But when we see those physical signs, we slow down, we don't speed up, we slow down. And we get next to them and we dose interaction by looking at a conjoint focus. I can interview the art, I don't have to interview the child. I when I'm when I'm talking to the art, we're looking at the art together. I'm not looking at the child in the eyes, we're looking at the art. Oh, look, look, look, he's got bristles. You know, and this little boy, huge sigh. And when you see a sigh like that, you wait, because you know there's a story with it, right? Yeah. You wait. And sure enough, his words came out. It was a hard day. And then we found out how his hands were in pain. He'd had to write and write and write, and his hands were in pain, his hands were in pain, and his hands were always having pain. And he needed, he couldn't, you know that chest for for radio ulnar function when you have a child do this. He had he had problems in his radio radio ulnar system. He couldn't he couldn't turn his hands like that. So you can imagine how holding a stylus was more difficult for him all day long. Exactly. It was very, very, it was very challenging. And and he, you know, he almost had what one would consider peripheral neuropathy. A real real neuromotor fatigue. Now, if people don't know that, they're not gonna offer him ice for his hands or or the kind of warming, warming mittens you can that you can put in the microwave that that provide warmth for the hands. Different kids need different things, but there are things that help with neuromotive motor fatigue if we know that it's there. Now, with brain injury, we learn, okay, there's been an injury, there's a baseline before, now the person's different. But with these children, we don't have a baseline to go back to. But we once we know, right, there was something different about how things developed. And so their nervous system and how it signals from the autonomic and parasympathetic nervous system, how all of that is is working together, it's working a little differently. The signals aren't flowing as smoothly for this person.

SPEAKER_01 1:04:36

Thank you so much, Aya. This is it's excellent, and I think um our conversation and our discussion has just shown um that we need a different approach of working with children with FASD, and that the exposure uh they've had from you know the you know, from maternal alcohol and has affected the way they process things. So if we have that at the back of our minds from the beginning, then we will seek to understand the children better. At schools, we would realize that what their nervous system needs impacts the way they behave, and that we need to understand that rather than adopting a punitive way or a harsh-disciplined way with them. Uh, we need to understand what those behaviors are communicating. And you've told us about children even with physical problems where they've not been able to communicate that, but how it's impacted on their behavior, and being able to do that has helped to, you know, somebody working with them. It's been amazing, it's been really amazing because um this is what. What I feel that um this is the understanding that people working with children and young people with FASD need to have, that it's not the typical behavioral approaches which we use that will work with them. We've got to I love the word swap, not stop.

SPEAKER_02 1:06:22

I found that so useful, and and the people who are now adults who who some of their families are still in touch after all these years, but they say that those swaps are still useful in adulthood, they're still using some of those techniques that they used in in childhood in order to calm and regroup after a day at work, to be able to manage, like an asthmatic learns to use an inhaler, you know. If we know what our body needs, because our stress threshold is a little different, if we learn what our body needs for managing, then we can have those, we can have those workarounds in our relationships, in our family, in our work environment. There are a lot of ways we can navigate with that. Once we have our stress kit that helps us, we we can we can use it more adaptively. And and as kids grow, there are ways we can broker scripting how to how to share that information selectively when they need to with, you know. What other people do they want to know? Here's what works for me, here's my here's my map, here's the map to me. It's for one, we help them have a map to themselves that helps their experiences make sense, first of all. And then what that means in interaction with others, we help them broker that back and forth, and it can be organized like it is for other physiological conditions.

SPEAKER_01 1:08:03

I love I love the idea of them having that personal map because it's almost like their own plan.

SPEAKER_02 1:08:09

They can well, they are so very individual. When we've met one person with FASD, because of the dose and the timing and the volume of alcohol or other drugs that admixture of what they were exposed to, each person's profile might have some things in common with other people, but it's gonna be pretty individualized as well. Yeah, based on their own, their genetic inheritance, their experiences. So, so what we have is we have a neurodevelopmental difference that's very individual, it has an individual flavor, and we've gotta find the strategies, build the map that works for that body in the way that it functions best, yeah, yeah, you know, and there's a way to do that. If we look at the neurophysiology as one piece, their neuroprint, second, how does that affect their energy system, their battery, their stamina level for stressors and for and then three, how does the environment fit and either exacerbate it or ease it? And then time, how does that function over time? Those are the things we can look at instead of using a behavior extinction paradigm, we can look at it like we would look at it for handling diabetes or handling any other neurophysiological uniqueness in a person, and saying, okay, how do we understand what your body needs and help you understand it and get it across to the people who need to?

SPEAKER_01 1:09:46

So the question a lot of my audience and families would be where can they get this information? Because it's not available within the therapy um world with the general therapy, when we refer them to the the usual therapies, they're not getting it there. Definitely not.

SPEAKER_02 1:10:06

This is heartbreaking. I know that art therapists, because we work with medical conditions and head injury and dementia and stroke and things like that, we use that habilitative perspective. So art therapists can help. I wrote a book about it, and that stress mapping system is in my book, and there's also a tool that I and a colleague of mine who was an educator, she and I go back 40 years in fetal alcohol spectrum disorders together. Her name is Deb Evanson, and she's an educator, and we developed an individualized environmental plan to help families look at the match between their child's unique neurophysiology and environmental factors to help see what the workarounds might be. So I wrote all that up in my book, and I've also shared, I'm I've helped other people who are approaching FASD this way, write about it, and and so I I provided a list of some other books that might be useful to families and to teachers and to various other professionals for being able to have a kind of shorthand to use this sort of thinking to look through, to sort of borrow our glasses and look and look through our glasses at seeing the body from this perspective and understanding symptoms from the level of reflexes for because reflexes aren't the same as choice. We we live in a time where people presumed that everything was behavior choices. Well, a lot of this is reflex. It's not driven by the frontal lobe where choices are made, it's driven by the stress system that's responding like an overactive car alarm. You don't even have to touch the car, it's going. Have you ever walked by those cars in the parking lot? You get too close and the alarm is going off. Like an overactive car alarm. You know, for asthma and for diabetes, or for these these neurological differences. They're they're subtle but significant enough that they can make life hard. They can make life hard. So that way of approaching it means okay, we learn how to manage our symptoms, and then we can figure out how to interact with others who who who function a little differently than we do. Fantastic. Thank you, Lord.

SPEAKER_01 1:12:48

We've we've come to the end of the podcast, and it's been an amazing session because I'm I'm definite that most of my audience will get a lot out of theirs. And these resources that you've described, we will put them in the um when in the show notes as well, where people can get them when we publish the podcast. We will we will put them there. Do you your your book, The Porcupine Booth?

SPEAKER_04 1:13:13

Yeah.

SPEAKER_01 1:13:14

So where can people get the book?

SPEAKER_02 1:13:18

It's available on Books by. There's a link on Books by, and it's available both in English and in French. I'm working on the German translation right now, but so it's available there. It's called Parenting Your Porcupine: a Toolkit for Children with FASD, other drug effects and neurodiversity. And it's it's not the kind of book that's easy to read through. It's the kind of book that you might want to graze from it here a little bit and take this section and then come back to it after you've tried a few things, see what you like, see what works and what doesn't, and then chew on it as you go along because it's kind of a manual with many pieces, many chunks of information. Okay. It's designed to provide a lot of basic information about the body and the body culture of living with this difference, with these differences, and how to organize an approach with it that uses workarounds, swaps, not stops, things that help the person navigate living in a very different body culture, and then dealing with that as a family, and brokering that with professionals who may not easily understanding why a parent is taking this kind of an approach. They may be thinking, well, you're being too easy on him, he's gonna have to toughen up, things like that. Yeah, ways to talk about what looks so different about their behavior. So there's even a glossary that discusses some of the terms that we talk about, alexithymia, speech and language issues, anomia, some of the problems that families might have been running into, but not known a phrase to say to a professional, wait, you're saying he doesn't want to. Actually, he doesn't understand that skill. There's a gap there, and this is why.

SPEAKER_01 1:15:20

Well, thank you so much, Antonia. It's been an excellent, it's been an excellent session. Like I said, when I when we had a brief chat last week, I enjoyed it so much. And I, you know, I left you filled with so many ideas and strategies and a better understanding of what my patients were going through. So I'm sure this session is going to be useful for so many, and when the podcast comes out, it's going to be one that will be so useful for many, and hopefully, schools, educators, and other professionals who come across and work with children with FASD would take something out of this as well. So thank you for coming over.

SPEAKER_02 1:16:04

Thank you for the great work you're doing. Thank you so much. I'm very honored, and I just encourage people to take what they need and leave the rest. Yeah, you know, and to go at it. Good scientific method, a bite at a time. If it doesn't work, set that aside. We try something different. You know? Trial and error is a good scientific method. Yeah, thank you so much. Thank you.

SPEAKER_01 1:16:29

As we always say, early intervention leads to better outcome. And early intervention can only be achieved by early diagnosis. So thank you for listening into the series today. Um, I know some of the things we've talked about today would probably have generated some questions or need to see clarification. So I'm happy to take questions and I'll invite you to send your questions to EIM at drtakon.com. Thank you for listening.