OTS 209: Rethinking Autism Support & What School-Based OTs Need to Know.
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Welcome to the show notes for Episode 209 of the OT Schoolhouse Podcast.
What if the way we've been supporting autistic students is missing the mark? In this groundbreaking episode, Jayson sits down with Kieran Rose—autistic advocate, researcher, and author—to tackle the tough questions school-based OT practitioners submitted about autism, masking, stimming, and neurodiversity-affirming practice.
Kieran challenges core assumptions about behavioral interventions, handwriting goals, conformity in classrooms, and what "support" really means for autistic students. You'll hear why masking isn't just "acting neurotypical for a bit," how monotropic attention changes everything about learning, and why occupational therapy is uniquely positioned as the most important profession for autistic people—if we return to our justice roots.
Jayson and Kieran also discuss the moral injury many school-based OTs feel when trapped between what they know students need and what the system allows, the problem with ABA's grip on schools, and practical ways to create "islands of safety" even within flawed systems.
This episode tackles the hard questions. Kieran doesn't offer quick fixes — but does offer frameworks, permission to rethink your goals, and the reminder that holding space for one hour a week might save a life.
Listen if: You've ever felt trapped between what a student needs and what the system demands.
Listen now to learn the following objectives:
Learners will understand the difference between impression management (context switching) and masking, and describe its impact on autistic students' long-term mental and physical health outcomes.
Learners will understand how masking can impact autistic students' long-term mental and physical health outcomes.
Learners will understand the concept of monotropism and how deep, focused attention can make frequent school transitions difficult for autistic students.
Learners will identify common school-based demands that may unintentionally prioritize conformity over meaningful participation, such as forced eye contact, suppressing stimming, sitting still, or handwriting expectations.
Guest Bio
Kieran Rose is a published mainstream and academic author, international public speaker, trainer, researcher and consultant to organizations all over the world with a specialism in Autistic Masking, Autistic Burnout and Autistic Identity. He was diagnosed Autistic in 2003 and is a dad to three autistic children.
Quotes
“They’ve got to feel safe at school before they’ll learn at school.” — Jayson Davies
"Occupational therapy is the most important profession in terms of any professional that can engage with an autistic person." — Kieran Rose
"You might have a child that you work with just for an hour a week, but the impact that you have on them is felt across their whole life." — Kieran Rose
"Sometimes we can change our language and still not change our understanding. It can be quite performative often." — Kieran Rose
"If you, as an occupational therapist, have drifted from your justice framework, you need to drift back again. It's really important that you do." — Kieran Rose
Resources
👉The Autistic Advocate (Kieran Rose's website) — Training, blogs, free resources, and consultation on autism, masking, and neurodiversity-affirming practice
Episode Transcript
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Jayson Davies
Hello and welcome back to the OT Schoolhouse podcast. I'm your host Jayson Davies, and I'm going to be very upfront with you right now. This is one of those episodes where I had to check my own comfort level at the door before hitting record, but I'm really glad I did, and I hope maybe you will if you feel the need to, because sometimes a little bit of discomfort can really lead to a lot of personal growth. When I went to OT school, I was taught one way of thinking about autism, and over the last decade, so much of that has been turned on its head. Because for the first 50, or really a lot more than that, 50 plus years of autism research, the people who actually live with it weren't part of the conversation, but now that's changing. And sitting with that change, really sitting with it, has been uncomfortable for me at times, and I'm sure it has with maybe you. Even something as simple as shifting from using person-first language to confidently using identity-first language can be really difficult. That's why today's guest is Kieran Rose, aka the Autistic Advocate. Kieran is an autistic author, researcher, and educator based in Newcastle, England. He's on faculty at the Starr Institute. He's written extensively on autistic masking, and he's spent years training practitioners around the world on what it genuinely looks like to support autistic people. What makes this episode really special and really unique is that we've built it around your questions-the ones that you sent in several weeks ago, the same exact ones that you probably have after a tough IEP meeting, or maybe on the way home after a long day at work, and even the ones that you might be a little afraid to ask out loud. Now you're about to hear me ask Kieran about masking, stimming, transitions, handwriting. Yes, even handwriting, diagnostic rates, ABA, and even the moral injury that we could tell from your questions that so many of you are feeling when trying to practice in a way that actually aligns with your values inside a system that sometimes doesn't always make that easy. Kieran doesn't offer easy answers, but he does offer a framework that I think every school-based OT practitioner needs to hear, and I'm really excited to get this episode started, so that you can hear that, this is episode 209 of the OT Schoolhouse podcast. Let's get into it.
Amazing Narrator
Hello, and welcome to the OT Schoolhouse Podcast, your source for school-based occupational therapy tips, interviews, and professional development. Now, to get the conversation started, here is your host, Jayson Davies. Class is officially in session.
Jayson Davies
Kieran, welcome to the OT Schoolhouse podcast. It is a pleasure to have you. This is one that I've been excited for, and I'm really happy to have you here. So thank you so much for being here.
Kieran Rose
It's a pleasure, Jayson. I'm delighted to be here. I've been looking for. We've been talking for months, haven't we? So I've been looking forward, really looking forward to this,
Jayson Davies
yeah. And this is a special one. We actually reached out to our community through the podcast, through our email list, through social media, because we wanted to have listener questions. And this is something that you and I talked about, and I think we're both excited for this because there's a lot of different ideas out there, and and we're going to talk about them today. So it'll be a good one.
Kieran Rose
It will.
Jayson Davies
Yeah, and one other thing that I kind of want to just right off the bat say is that as I was looking at your website, I was looking at your trainings, and something came across, and I'm excited for it because you specifically said in there that anyone you work with should expect to be challenged, should expect to you know have all their thinking challenged when it comes to autism, and again, what better medium than a podcast to do just that? So.
Kieran Rose
Exactly.
Jayson Davies
You ready?
Kieran Rose
I absolutely am.
Jayson Davies
All right. So rather than asking you to introduce yourself here, I want to instead ask you what you are most excited about right now, professionally, both in your you know research and your advocacy, and why it is that you're so excited about that right now.
Kieran Rose
Wow, that's a huge question. You've caught me off the hop there. The thing that I'm probably most excited about right now, and it's the thing that I've been excited about actually for a while, so it's a kind of an evolving thing, is the direction of travel that we are going in, in terms of research, because it's kind of we've gone back to being like the wild west in terms of all of lots of the things-not all of the things, but lots of the things that we thought we understood well-are now being directly challenged and kind of pulled apart and put back together again, and that's a really exciting time because I think obviously there's a there's a certain group of people who've been missing from the autism research narrative that will be autistic people, you know. And now autistic people are firmly embedded in that narrative, and we're getting all sorts of exciting concepts and new ideas and. New understandings, and and I think that's that's I'm really excited about where that goes. There's there's lots of things that are still wrong, obviously, but that little pocket of change, and I think we're already reaping the rewards from that. The kind of the reframing and the the the kind of new understandings around kind of attention and behavior and and motivations and and all of those kind of things, like sensory things, and how our bodies are working, like all the stuff that OTs love, like that's really at the heart of all this change as well. And I think that's just-it's such a fascinating and exciting place to be. So, so yeah, that's the that's the really big thing that I'm I'm excited about.
Jayson Davies
Perfect. And to kind of a follow up on that, you know, when I was in OT school, you know, 1012, years ago, person first language, you know, was the the like gold standard.
Kieran Rose
Yeah,
Jayson Davies
and now we are using more of that autistic language. Is that something that actually kind of came out of this new research that included autistic people, or did that come a little bit before,
Kieran Rose
I think that's been that's been there for quite a while. The autistic community that I think there's been about a shift over about the kind of kind of 25 last 2530 years, and then as we have discovered more and more autistic people, and or recognize more and more autistic people, I should say that then the narratives around that have become bigger, and the the momentum has grown around that. And I think it's it's always it's it's such a fascinating thing because I've done a few research papers on like the language that we use around autistic people and neurodivergence, and and there's still disagreements. There's still about how people personally like to kind of refer to themselves and be referred to, but the overwhelming majority, time and time again, we're talking about like 75% of all research samples lean towards identity-first language, and I think I think that shows the shift how we're shifting from this kind of medicalized behaviorist place into this more identity framed and recognition actually that that there is a valid experience going on here that doesn't necessarily need to be intervened with or changed, or you know, doesn't mean that people don't need support. But changing people fundamentally can be problematic, and I think the language is a driver for that. So I think it's really again, it's one of those exciting places to be where those changes are happening, which can also be scary for people who have been using certain terminology for a very very long time, and now feel like they're tripping over themselves all the time, probably, and it's hard.
Jayson Davies
Happens to me. Yeah, yeah, it will. And you know, there there's also been times, and you know, as professionals, these are things that we think about, right? We think about how we address people, but then we sit in IEP meetings or parent meetings, and you know, they have they don't look up autistic research, autism like research on these things, right? And so when we sit in these meetings, you know sometimes they are using a particular type of language that you might not want to use, and I feel like this comes up in the sense of like, how do you address that? Is it something that we should educate parents on. Oh, I think you should actually call your child autistic as opposed to a child with autism. Or do we just let it slide? Or do we just like? Is it even is it something we should be addressing?
Kieran Rose
I think it's something you should be thinking about very very strongly. Whether you actually do the addressing or not obviously depends on the context and the situation because some parents just aren't in a space to even hear that because they're they may be struggling immensely or you know they may be going through that that I hate to call it a grieving process but there is a grieving process often that parents are set up to grieve I think we have a question on that maybe later don't we around that kind of that kind of the feelings that this kind of all invokes and the stigma that's related to it but yeah, I think it's a it's a very contextual place. Psychoeducation is always important, and often the language that we use can be an indicator of our understanding or our lack of understanding of a certain thing, or at least the lack of nuance around that thing. So, so I think if the timing feels right to be able to step in and say, I've just noted that the language that you're using. Like, like, could we talk about that for a second and think about what that means? And because at the end of the day, if we're talking to parents, parents only adopt the language that they're given, and they are given that by professionals and academics. And and and, but that language is changing, and it is changing. But it takes a long time for that change to get into culture and to get into society, and and you know, so so it's I think the only thing we have to be cautious with with the language change is sometimes we can change our language and still not change our understanding. It can be quite performative often, so so just just kind of recognizing that as well. There there's so much depth and richness to all of this, and sometimes we're pushed down very very superficial and fast routes where we just take quick decisions, or or we learn something very quickly and think we have a grasp of it, and actually we might not really have a grasp of it. Just using the language isn't always enough. So, so yeah, so it's that within itself. That's a podcast within itself. Having a conversation about that, isn't it?
Jayson Davies
I'm sure we'll have many of those moments today, and. But but you made you make a really good point. Like a parent who is sitting across the table from us and calls their child either autistic or my child with autism is only saying that because that's what they've heard the doctors say and that's what they've heard the neuro you know the neurologist say or or whatever that is. So that's a really good point. You're right. Like even if we don't you know, address the issue in the moment, just by using that language, we're in a way letting the parent know, like, hey, it it's okay to use that language. Yeah, this is the the language that we use. So.
Kieran Rose
and I always I always hold the kind of the thought that I'm someone who needs to model, and so the language that I use would be the language that I would like other people to use. That doesn't necessarily mean that they have to adopt it, but I will even if someone's in a space where they're talking about a child as a person with autism, I will still be using they are an autistic child. So it's it's kind of that as the conversations go on, sometimes the osmosis effect kind of works, and and people just pick up that new thing and just have a think, or sometimes they get curious and they ask questions about that as well. Like, why are you using different language to me? So it's it's that modeling is a is a really important thing as well.
Jayson Davies
Yeah, yeah, such an interesting topic. But again, let let's continue on. We had some questions that came in around masking, and they weren't like what is masking. So before we actually get into the questions, I do want to give you a moment because you have an entire book about this to discuss just a little bit about what masking is, what it looks like, and the impact that it can have on a child.
Kieran Rose
Yeah. So this is this is a huge topic. Obviously, like you said, I have I have a book on the entire subject on that book. That book wasn't long enough. So there is often a big misconception. There's lots of misconceptions around around masking, and firstly, like the usual kind of pushback that when when autistic people talk about masking or parents talk about their children masking is, well, everybody masks, and yes, everybody changes their behavior in small ways. Everybody does context switching. Everybody acts a little bit differently in certain situations around certain different groups of people, and that and that's that's that's a that's a known thing that all humans do. But when we're talking about masking, we're talking about something very very different. We're talking about those behavior changes, but we also need to understand about how identity develops. So identity management is a little bit different to impression management. Impression management is that context switching, that changing, but identity management is the chronic effect of being in environments where you are constantly having to hold yourself in a certain way because of the expectations that are being placed on you, and the impact that that has. So, that that that kind of behavior switching, it might impact you you in kind of energy ways in in small ways. It might impact on your mental health in small ways. But when you are doing that consistently, and your whole identity development becomes framed around that, that's when that's going to have massive impacts on your mental health, on your physical health, on things like burnout and stuff like that. So so they're the they're the kind of longer term kind of impacts of this. And really, what is at the heart of this are two two factors: a stigma and a lack of safety. And when I'm talking about a lack of safety, I don't necessarily mean being at risk of physical harm, but felt safety, psychological safety. So, being in environments where you know that the the sensory environment isn't quite right, where people are maybe invalidating you or correcting you, or there's expectations of you that you know that they are wanting you to meet, but you aren't able to meet always. Being in environments like that is unsafe, and a lot of those environments are environments that we are mandated to be in, like schools, workplaces, like like the places where we spend lots and lots of time. Sometimes even the home, because home isn't always a safe place for everybody. Even well-intentioned places can be very unsafe. So when you exist like that, and if you think about the ways in which autistic people are basically subject to correction, pathologization, invalidation, all across every aspect of being a human being. Around how we communicate, how we move, how we eat, how we sleep, how we think, how we feel, how we emote, how we play. Everything about being an autistic person is up for correction in some way. And even if that's not being done to you in a direct way, you know, in an open way, still subversively, people are affecting your behavior and expect making expectations of you. So you, as you grow, you adapt to that, and your identity becomes formed around meeting other people's expectations. And those expectations might be for you to conform. It might be for you to display big behaviors, big emotional outbursts, like whatever's expected of you, whatever framework people hold of you in their heads and their expectation of you, you are constantly trying to meet. And this, this, this works for autistic people who are speaking, autistic people who are non-speaking, autistic people who have physical disabilities. All humans are engaging in this, but when you are subject to that level of stigma. And unsafety, then you are more likely to be engaging in this. So, and what that does for you over the long term is obviously it has, like I said, a massive toll on your mental health. It takes enormous amounts of energy to do that, and we have a massively. I'm sorry to talk about this early on, but trigger warning. I'm going to mention suicide. We have massively high rates of suicide amongst our community, like more than any other group on the planet of human beings. And when you look at life outcomes for autistic people, we are up the top for the worst outcomes across pretty much every single life outcome that you can think of. Our biggest killers are suicide, like I said, but also strokes and heart attacks. They're the three biggest killers of autistic. Yes, statistically, the three biggest killers of autistic people. So when we talk about masking as children, this is something that we are also taking into adulthood as well. The impact that is felt on us as children is being impacted across the lifespan. So, you know, like I always say to educators and people who work in education, you know, like you might have a child that you work with just for an hour a week, or you know, you might only know them for a year, and then they might move on to a different class or a school, different school or whatever. But actually, you hold the impact that you have on them is felt across their whole life. So that's that's a huge amount of power that professionals wield over autistic children, but also it's it's an opportunity as well, so yeah. So so most people think masking is I'm going to stick on my neurotypical mask and I'm going to act neurotypically for a short period of time and then I'm going to take it off again. But actually, this is something which is a whole body experience and is a chronic lifelong experience as well.
Jayson Davies
Yeah, you know, as you were talking, I was thinking like, yeah, we all change our behavior a little bit, right? Kind of as as you started that off with, but I, I mean, in this particular context here, in a school based occupational therapy podcast, we're primarily talking about you know those kids, those younger kids, and when we think about kids, we don't think of them doing as as much as you know your your businessman, your your adult, like that isn't something that kids normally do. I mean, at least not to an extent that adult does. And as you kind of alluded to, right? When you're doing it at such a young age, that that becomes a part of the identity, and and that is unfortunate. I think of one one kid who I worked with, an autistic. He was probably about I think like second grade, and you know we were just walking to the OT room, and I said, "Hey, what's up, dude? And he says, "I'm not dude, I'm his name, and like I was so thankful that he had the ability to tell me like what he actually wanted to be called, what he appreciated, and that then leads me to think about all the kids that we work with who don't have that ability to express themselves. Like that's that's really hard to know how they're feeling.
Kieran Rose
Yeah, yeah, it absolutely is, and that's that's, I mean, that's that's a perfect argument for total communication. Firstly, isn't it, and and and having the opportunity to communicate in different ways, but also that's an indicator of some children feel more safe than others. Some children, all all of these children are subject to stigma, but some of them feel it more than others.
Jayson Davies
Yeah.
Kieran Rose
So some children have the ability to advocate for themselves. Some have don't have that ability. So so this it's a mixed smorgasbord of things that are going on, but it's important to hold that in our heads because we miss children for certain. We miss the quiet children. We also miss the big the children who show the big explosive behaviors because we usually put them in a completely different box. And it's you know so so so these behavior changes are happening and this identity shifting is happening and masking is happening in all sorts of different ways, like the class clown is a mask, and people who fit different social niches. All of those things are aspects of masking. But so we need much higher level thinking and critical thinking when we're when we're looking at stuff like this, and not just going straight to oh, masking means small and quiet, and you know, like like those things are real, but also other things also exist at the same time. It's it's a much bigger, and there is a big irony in this narrative. Having having been part of the academic narrative of kind of understanding masking for for about a decade now, the existence of masking that we are talking about negates the theory of mind, the lack of theory of mind argument. So, because in order to in order to be able to project a version of yourselves that other people expect, you need to be able to sense what other people are expecting of you. So that requires theory of mind to do it. And it's so yeah. So again, like like we could go off in 200 different directions around things that hold much more nuance than we think, or are misinterpreted or misunderstood.
Jayson Davies
Yeah. So the question here that we have was, how can we support students who mask all day at school and then you know go home and melt down? And we and we hear this right with parents, right? Like, oh, they hold it together at school, but. And you should see them when they get home. Yeah. So, kind of like two parts of that, I think, is like, a, is this something we can screen for? Can we identify who's masking, who's not masking, and then b, what you know, like, what do we do? Is it mostly education based, letting everybody know around that student, or is there something an intervention we can do? T
Kieran Rose
The biggest intervention that we could do is change the entire way that we educate and hold space in education. I think, like, like there's a there's a whole conversation there about actually the way that we do things is really quite problematic, and the way that the I mean, the British education system, the American education system are very similar, and Westernized education is is very so it all comes out of a kind of an English model of education, and the world has moved on far beyond what the education system currently looks like, and our understanding of humans has moved far beyond, and how humans learn has moved far beyond how the education system works. I don't want to go too much into that because we'll spend the next hour just talking about how we can deconstruct school systems and reconstruct them, which I would love to do. But so we have a problem where we are existing in a flawed system, and that system doesn't recognize its own flaws, or at least maybe recognizes them to an extent, but doesn't have the ability to make much change around those things. So we are asking then children to move into a system which is problematic and which doesn't recognize the way that they learn. To be to be frank, I might throw out some terms, and if you want me to kind of dig into, like, give a little kind of definition of what they mean, because not everyone will be privy to those, but they're like my bread and butter. So, children who are monotropic. So, monotropism is a as a theory around the way that autistic and ADHD children use our use their attention. How autistic and ADHD people use our attention, in that we have an ability to kind of focus on something to incredible depth, and that is an incredible tool for learning, our current school systems don't allow for us to kind of focus to that incredible depth because there's constant transitions in school systems. So, and even in a an hour long class, there's like hundreds of transitions within that hour long class, and it doesn't it doesn't support monotropic learning. Now we celebrate monotropic learning in certain environments, and so so if you think about academia, and someone who's developed a PhD has spent literally three to five years answering one question, that's literally like all your attention is on one singular thing. But in a school system, the school systems that we have, there's there's lots of different pathways that we are expected to take simultaneously, so it doesn't allow for that kind of singular kind of focus and that that deep rich learning focus. So if we were going to on a very big way make an intervention, I would say we need to look at the curriculums that we use and how the school day is built. Is it built to facilitate that kind of learning? And if it isn't, your your autistic children in that space, and your ADHD children, that space automatically have a massive barrier, and that's the biggest barrier that you can put in front of them. Your brain isn't allowed to do what it's designed to do. That's a huge issue. So we might not be able to change the whole school day, but there's little ways that we can maybe flex in there. Like, can we change the structure of individual lessons? Can we diminish the amount, or reduce, or mitigate the amount of transitions that we're expecting a child to have, and that doesn't just necessarily move like movement from classroom. I know in the US, teachers move from classroom to classroom, don't they? In high schools, sometimes here in the UK, the kids are moving around constantly, which which is like corridors are constantly filled with children every 45 minutes to an hour. And oh yeah, that's in high school, middle school. That's yeah. That's our right to there. Yeah. So so so there's big things, but there's all sort of micro transitions. Like how is a child expected to change their attentional style within a classroom, within a learning environment that's like there for a subject. So play based learning is is amazing for that because that means that a child can just go and explore and be creative and curative and and do lots of things. And self directed learning is often something which autistic young people like like like are very very good at. But if we're not facilitating those things, then we're actually denying them their learning opportunities, and then we wonder why we have big behavioral outbursts, or we have children who can't use their attention or can't focus in the way that a teacher requires them to focus or a school requires them to focus, and and actually because we're not setting up the day to actually facilitate their learning needs, so big interventions and small interventions within that would look like actually how can we reflect on the structure of what we're doing, the actual whole synthesis of everything, and how can we flex within that if we can't change the big things? What are the small things that we can do to facilitate this more and more and more.
Jayson Davies
Yeah! Wow! Wow! Yeah, we're gonna everybody just go purchase every single one of Kiran's courses, his books, and get all the knowledge. We don't have enough time here, but we're gonna do as much as we can. We did have a question specifically about masking in females. Autistic females. I don't know if you want to go specifically. We've done masking a lot here. If there is anything specific to females, go for it. But you have one daughter, and you have really-I mean, everything autism is you. Something in our planning call you also surprised me about was like diagnosing, and so maybe these questions might go together a little bit: overdiagnosis, underdiagnosis. But I want to give you an opportunity to talk about autism and females, as well as a little bit about diagnosing.
Kieran Rose
Sure, sure. So, in about 2015, there was a shift in attention in terms of across genders, and rightly so, because autistic women and girls have been missing from this narrative forever, going all the way back to the published work. I'm going to say that's very specifically the published work of Asperger and Canner and and the kind of those people who who kind of laid the foundations for everything that we we do now and everything we think now. Although they had girls in their clinics, an equal number of girls in Connor's case publish work focused only on the boys. And think about that. Think about that contextually in the kind of the 30s, the 40s, the 50s, even through to the present day. To some ways, who's more important, or who is deemed to be more important? The person who is going to be go out and be the breadwinner, and and you know, boys and men are you know from a misogyny kind of point of view are more important. That that's how things have been framed historically. That's not me saying that. That's how things have been framed. Correct. So, autistic women and girls have always been there academically and statistically. We can look back and we can see autistic women and girls have always been there in equal numbers, but the attention was put on the men. So in about 2015, that started to shift, and rightly so. Like I said, because there's been a huge amount of anyone who isn't who doesn't identify as male has been missing from all of this. Unfortunately, though, and there is an unfortunate kind of side effect to this. At the same time, the academic interest in masking kind of kicked off and sparked off. Even though the autistic community has been talking about this stuff for like decades, academia only took notice around the same time. So it became a very convenient thing then for academics to turn around and say, "Well, we've just figured out this masking thing, or we've just realized that this masking things exist, and we've just realized that all these women and girls have been missing from this narrative for the whole time. So they put two and two together and came up with 474. So they basically the narrative that spun out of that then was that autistic women and girls have been missing from this narrative, not because we haven't been looking for them, but because they were all hiding from us, there they are. Like there's one behind the table over there. There's one hiding, like a sneaky one behind the tree over there. Like literally, that's the narrative that evolved out of this. And then the secondary narrative, which is something called the female autism phenotype, which I hope you won't be offended when I reduce it down to its an acronym, which is fab. So we're talking about a sexist and misogynist narrative, and all of a sudden we have an acronym, which is obviously in American parlance means something very, very different. So, so there's a little bit of sexism and misogynism still wrapped up in this too. So, what the female autism phenotype basically states is that there is a whole different version of autism, which only women and girls experience. Female autism, and the ridiculous thing that's evolved out of that is that now we have lots of boys who, on their diagnostic profiles, it says presents as having the female autism. What? It's just meaningless. Absolutely mean. This is the problem with phenotyping across genders. So what's actually happening? And I've got a little quote that I always use, which I stole from a colleague of mine, Eleanor Broadbent, years ago, and I use it everywhere because it's the most amazing thing. What she said was, when boys line up toy cars or nuts and bolts in a perfect logical order, we call that autism. When girls line up stuffed toys and clothes in a perfect logical order. We call that good housekeeping. So the presentations are actually exactly the same, but the way that the frame of reference, the lens that we look at different genders through, is completely different. The expectations that we have of different genders is completely different. Now, that's not me saying that that boys and girls are identical. Obviously, because like in terms of anatomy, there are going to be different experiences. Absolutely, people who are assigned female at birth are going to be biologically experiencing something different in terms of periods and hormones and body changes and stuff like that. That's very very real. So there's going to be different autistic experiences through that. But fundamentally, the baseline experience is exactly the same across genders.
Jayson Davies
Yeah.
Kieran Rose
So, the other interesting thing about this is that because in a kind of an oversteer and a course correction from oh my god we've been missing all these autistic women and girls for years and and now we need to change that is that we've dropped the ball on everybody else, including the boys and men. So women and girls are now overrepresented in autism research. So, which is which is just like like I mean it's good in a way because we're playing catch up. But if we're playing catch up and we've taken the R I off of everybody else, then what are we missing and what aren't we learning? We've just completely oversteered in the opposite direction. So so yeah. So it's there's there's a again, but this is this is why I keep using the word nuance. There is so much nuance required to understand these narratives, and there's so many different threads to all these narratives that actually pulling them all together and being really critical about them is really really important. Because otherwise, we just blindly accept what somebody tells us. But historically, we've done that. We've spent 120 years listening to academics who have been observing autistic people, but haven't actually been co-producing and talking with and spending time with, and and and actually working with autistic people in that sense. So you know, or allowing autistic people to lead. So there's so much missing, so much that we don't know, and we fill the gaps, and we what we fill the gaps with, we believe is concrete, but actually it's not concrete at all. Often it's putty, and it melts in the sun, and it's flexible, and it moves, and we have to dig it all out and replace it with something else. And so we're still we're still at the very early stages of understanding all of this, and yet we say things with such certainty, and we create interventions with such certainty, and we do things to people with such certainty when actually we are missing boatloads of information and context.
Jayson Davies
Wow, wow, yeah. You know, we actually had a few questions about overdiagnosing,
Kieran Rose
which was really interesting because I think there is like this over there's this belief that there's actually overdiagnosing that maybe people who actually have ADHD are being diagnosed as autistic or other learning disabilities are being diagnosed as autistic. But it sounds like from from the research that you've done, it's actually more under diagnosis of we're missing still large numbers of people in terms of diagnostic kind of profiling, and also thinking about that in context of you know how things are done in different countries and how people are accounted for in different countries. Like here in the UK, there's very little actually tracking of diagnostic rates, and the way that the NHS, the health service, works here is that it's independent. Each each NHS area is independent of another, so they all track data in different ways, and they look for different things. So there's no uniform way that people look. There's no no one person sitting there counting the beans of how many autistic people are getting a diagnosis. And then obviously outside of like the UK and North America and Australia and New Zealand, that side of the English-speaking countries, things are done very different differently culturally. People have different expectations and ideas around all of these things. So there is not a single way that we can say that diagnosis is skyrocketing because it might be within a certain limited context, but outside of that context, when you bring back the nuance again, you recognize that numbers are going high in terms of diagnosis because we're actually catching up in addressing the fact that people have been missed all this time. That's a thing, but actually, when you look at the baseline numbers, the the escalation of it is actually very stable. The the when you dig into the numbers, the amount of people being diagnosed and the amount of people being recognized actually isn't abnormally going off in any direction at all compared to population levels. So you know it's there's a there's a context here of we are understanding things better and we are getting much better at recognizing people who exist in a certain way, and now we're getting to the point where we're being we we're getting better at recognizing adults who have been missing predominantly from this narrative. So of course those numbers are going to change, and it's going to look in a very singular way very dramatic. But when we apply context and nuance to it, actually, it's not dramatic at all. It's it's to be expected.
Jayson Davies
Yeah, yeah. All right. Well, we're going to take a quick break, but when we come back, we are going to address the most asked questions about stimming, regulation, and participation, and how those go together. So we'll be right back. All right, we're back, and I'm not going to to take one particular question here because we had a bunch of questions about this exact same topic here, and this is the idea of how do we address STEMing while also remaining neurodiversity affirming and supporting these students when there are these academic expectations. A lot of our, you know, listeners, they asked us, "I have this student who, you know, we're trying to get them to do one thing, and they just want to stem, and I want to let them stem, but I also understand they're in school and they need to learn. I'm sure you have plenty of thoughts about this, and I just want to let you let you talk.
Kieran Rose
I do. It's it's interesting actually because obviously you sent. Sent through a lot of the questions before, and I never really look at them, and I did this time. I just had a quick skim read, and I, I felt really sad because I could see the moral injury that was being experienced by the people who were asking these questions. That that being in that dichotomy of I know actually what this child needs and what I need to do for them, but I'm restricted because the system that I'm working within does not allow me the freedom and the the curiosity and the creativity to be able to actually meet those needs because the system has a whole different load of expectations and objectives, and so, so I don't have a perfect answer for how do we how how do we do this? How do we fix this? Other than burn it all down and restart again, you know, which is which isn't a helpful answer. But again, I think it comes back to recognizing how can we flex within the system that we are trapped within, and also how can we look after ourselves within this as well? Because I think there is a bigger question around kind of people who are working in this system who are also being traumatized by the system as well, and working with one hand tied behind their back and not able to do those kind of things. So, but that's I'm not going to go there because that's like well, it's also why we lose a
Jayson Davies
lot of people. Well, it is, yeah. People burn out of it
Kieran Rose
Yeah, because they can't do what they know that they need to do and what they're trained to do as well. You know, like like nobody, I don't think, goes into being an occupational therapist, which, by the way, I think is the most singular, most important job that you can do, working with an autistic person. You're the occupational therapists are the most important professionals who are secondary, slightly secondary of speech and language, but pretty close. But but in terms of you know the way that we live our life is fundamentally important. I think so many people devalue or don't understand what occupational therapists do and what occupational therapy actually means. It's a very misunderstood profession, and the vitalness of understanding occupations, the things that we do, of understanding the way that our body relates to the environments that we're in, our sensory profiles, the way that our you know in terms of praxis, how we move, and and all of those things, how our internal mechanisms work, and how that relates to the pressures that are put on us, and like there is so much to hold as an occupational therapist. So I just wanted to kind of shoehorn that in there. Of your jobs are vital. So anything that you hear me say is critical of systems and and professions, not of you as actual practitioners. But in terms of things like stimming and stuff, and and and also learning, I mean, I've got a little very very quick anecdote, which is a very singular thing if you just looked at it that way. But actually, it's representative of a much broader narrative. I've got a client who I've worked with for a number of years now, who runs a language franchise, so teaching young children how to speak French and Spanish and Mandarin and things, and and often does community classes. And in one of those community classes, they had an autistic child who would not engage, would not come and sit down, would not come and sing the songs, would basically run up and down the back of the hall for every single session, and wouldn't wouldn't engage, would flap and spin, and and all of those things. And they came to me and said, like, what do I do? How do I get them to engage? And I said, how do you know they're not engaging? Just because they're not conforming to your idea of engagement doesn't mean that they're not actually taking part in the session that you're doing. So I said, just run with it. Like they were building up to a kind of like an assembly at the end where they would be singing and things like that. I said, just run with it and see what happens when you get to that assembly. Just bear in mind, like hold space for the fact that things might not look the way you expect, but the outcome might be magical. And when it came to that assembly at the end, guess which was the one children that knew every single word to every single song and performed it at the top of their voice. It was the child that would be running up and down at the back of the hall. So you know, so so we have an expectation of conformity, and our educate. This is why I was talking about Westernized education again. That's built this idea of conformity. We sit at a desk. We look at the front of the room. The teacher stands at the front of the room. The teacher points to a board. Teacher tells us what to do. We do it and we wrote and we repeat. And that's that's called learning. And it isn't really learning. That's conditioning. That's a very different thing. Learning comes from curiosity and from being able to explore and play. That's real meaningful learning. There's different ways that we can learn, but that that will be my kind of core basis for learning. So, when a child, I am getting to stimming. I promise. When a child stims, and when an autistic child stims, well, when any child stims, because this is a human behavior that we're talking about. All humans move our bodies in regulatory ways. When when is that good stimming or bad stimming?
Jayson Davies
I'm playing with a foot cushion right now, like in between my two feet. I'm just like rubbing it around. Yeah, so
Kieran Rose
Yeah, so yeah, it's like like me from the bottom down. Like you can't see what I'm moving out onto the desk. So because all humans stim, we do not only stim for regulation. We. System is a form of communication as well. This is where all the speech and language therapists are like, so stimming is a way of communicating how we're feeling. It's a way of helping us absorb information. When you have a group of children for whom the sensory world is fundamental to their existence, autistic children, obviously the sensory world is fundamental to all humans, but in a much richer, deeper, we have a much richer and deeper connection with the sensory world, and a much it impacts us in far more obvious ways, negatively and positively. So, when you have that rich level of sensory information that your brain is mining into and is using to kind of assess whether you're safe. Assess whether there's good information out there. Assessing whether you can focus on things and all of that stuff, which is rich and meaningful for your existence, your body, your stimming, the way that you move and the way you regulate is going to be more obvious. It's going to mean bigger movements, jerky movements. It might mean spinning and it might mean flapping. It might mean playing with pens. It might mean having little little things that you fiddle with all the time, and like I have a whole bank of things here. So it's that's important. And the more we suppress that, the more we're actually suppressing learning. We're suppressing safety. We're suppress. We're impacting negatively on all the things that we actually think we what we intend to actually positively impact. So, I think we need to hold space for the fact that autism. This this is the thing. Like, we diagnose autistic children and we define autistic children as being different in a variety of ways. When an autistic child expresses those differences. We all go. They can't do that. They shouldn't be doing that. We need to stop that. Why are they doing that? That's really confusing. So there is a dichotomy between we recognize difference and then we basically look at difference in horror. But that difference is a meaningful difference, and that difference means we need to adjust what we're doing. We need to adjust our frame of reference. We need to adjust our expectations. We need to understand the motivations of that person because they're different. But we don't do that. What we do is actually look at them and say, "How do we make you more like what we want you to look like?
Jayson Davies
Yeah.
Kieran Rose
And that's a really problematic way of doing it. So I think in terms of stimming, we need to be encouraging it. We need to have more movement. We need to recognize that a classroom doesn't have to look like children sitting down and looking straight ahead and being very still, because that might look like learning, and that might look like the teacher is having attention. But believe you me, if I'm sitting in that classroom, my brain is gone. I'm somewhere else. Even if I can hold myself in that still way, I am not able to do that and pay attention to what the teacher at the front of the class is saying. I need to be moving. I need to be doing things. I need to be up and down. I need to be fiddling, and that's why we have this this whole thing about like like if we stop that, that's great for teachers in terms of they have a quiet class, and they may the rest of the you know the class generally might need the objectives that the teacher wants them to meet, but we're also not meeting the needs of certain children in those classrooms, and we're probably not really meeting the needs of any of the children in those classrooms meaningfully. So I would say we need to change our objectives and our targets again in that big picture way. That's the thing that we need to do. A frame of reference for how we teach and what learning looks like needs to change fundamentally.
Jayson Davies
Okay. Follow up pushback just a tiny bit here. A lot of what we do as occupational therapy practitioners is very physical. It's handwriting. It's using scissors. It's manipulating items, and so I mean, just hand flapping. We go with that sort of stem at this point. Really, does is not conducive for having to do things like that. So, in that sense, does that mean we a allow the student get all the movement out, wait until they are in a moment of calm to work on that. Potentially, do we in the moment try to prevent the hand flapping? Do we just say, "Hey, you know what? Handwriting isn't important right now. Let's look at other forms of written expression.
Kieran Rose
Yeah, it's interesting because I was talking to my kids about coming on the podcast before we were having dinner, and I I read out some of the questions to them, and they were like, "You can't stop them doing that. And like, why do they need to write things down when there's 100 different ways that we can record information? And so, again, it comes back to actually, we need to look at yes, we do things in a particular way, and we may have done those things in that particular way for a very long time. And what that has done is created an expectation that's the only way we can do things, but again, we need to step put our one foot back in our curiosity and our creativity, and we need to reflect on this might not be a meaningful activity for the person that's in front of us. And if it's not a meaningful activity for them, what is a meaningful activity for them? Sometimes we can reach the same place by taking a completely different. Sometimes we can't reach the same place, and that's okay. That's a that's a disability narrative. That's a normativity narrative. You know, we don't. Why should we all end up in the same place doing the same things? Yeah. Some people have the ability to learn incredible things that I can't do. There are things probably that you can do that I cannot do. Does that make me more problematic than you? Does that make me disordered? No, it doesn't. It just means that we've got different skill sets. So that doesn't mean that we can't try, and that doesn't mean that we shouldn't try, and we shouldn't introduce people to different things and different ways of doing things. But when we get trapped in these singular paths of these are our targets and objectives, they have to do ex cursive handwriting, they have to use scissors. They have to do this and do that. And I mean, actually, when you think about, like, I very rarely use a pen anymore. So you know, I type. Everything I do is type is either typing on a keyboard or it's typing on a tablet or a screen or you know, like like. So actually, pens are becoming less and less relevant. Handwriting is bigger, and that's not me saying it's not an important skill, but it's not a skill that everybody necessarily needs to have to the extent that we are pushing them to, and I think that's also an education narrative where you know kids don't do science at school; they're young scientists. Kids don't do maths; they're mathematicians. You know, like we're creating roles for them. Like the expectation is that if you follow this line well enough, you're going to become this thing, and actually, that's not right for everybody. It's absolutely not. So, while again, I need to reiterate that that it's important that we introduce lots of things and lots of opportunities for doing different things. Absolutely, like things like handwriting, and because those are some beautiful, and handwriting can be an art form. You know, like it can be beautiful, but it's not necessarily right for everybody. So if you are hitting that many walls and that many barriers, maybe the timing isn't right, or maybe the methodology isn't right, and maybe we need to be curious about that. About what can we do differently?
Jayson Davies
Yeah. One thing that that I come back to was you know one of the first things you mentioned on the podcast, and I don't want to butcher the word, but it was the mono. Say it one more time.
Kieran Rose
Monotropism.
Jayson Davies
Monotropism. Yeah, and so I think about that because I mean we've all worked with students or worked with autistic individuals where yeah they don't want to copy an agenda from the board, but you get them writing about Mario and my goodness, and it goes yeah yeah
Kieran Rose
yeah. So you can you can incorporate interests and things into things, and sometimes that can be a motivator. I think you have to be careful around that because sometimes you know, like when people turn the hobbies into jobs and then they lose the passion for it because it kills it. So sometimes you have to be cautious about that. You can over overkill it and kind of over saturate it. But also, I think there's different things that we need to consider here as well. Is and I bet there is not an autistic child that you haven't that you've worked with that hasn't shown a kind of skills development that's looked like that, and then all of a sudden they've gone like this. They pick something up out of apparently out of nowhere. They've just suddenly started doing something, and that isn't because they've suddenly just started doing something. That's because their brain has been maybe whirring on it in the back in the background, actually trying to figure out the mechanisms of what this is. How do I train my body to do this without outwardly doing anything? So you can't see inside those children's heads. So you don't know actually what skills they're working on, and what their brain is prioritizing at any given moment because it's working differently to yours. It's literally there is a huge empathy gap between autistic people and non-autistic people because our mechanisms are completely different. We're all human and we're all similar, and we can all kind of work towards each other's kind of the way that we do things. But there's going to be fundamental differences. So if we're not accounting for those fundamental differences, those kind of spiky profiles, those non-linear kind of skill development, and like we should be expecting those things rather than being thrown by them and and being shocked by them and surprised by them, because like like I said, like there is not an autistic child in the world that doesn't have a spiky skill development profile, you know. But and we know that, but yet we're still surprised by it, and we still work on how do we make it non-spiky. And actually, why don't we just lean into the spikiness?
Jayson Davies
Yeah, I remember. I don't hear it as much, but we used the term splinter skills was sometimes kind of associated in that way, right? Like this student had a quote-unquote splinter skill in this particular skill set, and and yeah, like I mean, there's been times where I'd sit in an IEP and I say, let's lean into those strengths and use those strengths to accommodate some of the areas of difficulty, right? Like if they are good at typing, let's use typing to our advantage, or if they are really good with one particular thing, let's use that to our advantage.
Kieran Rose
Exactly, and I think it's it's a healthier way of thinking about human development as well, because again, I think it's and you know from a from from a justice perspective, which I know occupational therapy comes out of, it's purely comes out of justice. The occupational therapy, at its heart, recognizes that every single human on this planet is absolutely unique in the way that we. Learn the way that we develop our skills, the the things that we do. Yet we are being asked in educational terms to work within a conformity environment where all those children are the same, have to go through their different skills development sets and targets and objectives. They all look the same. The outcomes have to look exactly the same. That's not how humans work at all, so we are actually working counterintuitively, and again, that brings me back to the moral injury that I know so many occupational therapists face, because you know this in your gut, but yet you are expected to work in ways which are actually counterintuitive to the way that you know you need to work, and that's a hard place to be.
Jayson Davies
You know, if if you had one hour, if you were an occupational therapist, you're at a school, you know it's a K through six school, whatever it might be, and you've got one hour that you can provide a professional development to everyone on the campus about autistic individuals, what would you spend that hour on?
Kieran Rose
An hour's not very long. An hour's not long enough. What is it? I don't even do al-on training anymore. I refuse to do it because it isn't long enough. But um, but I think I think probably I'd focus on three things. Now this is this is me coming at this as obviously I understand these three three things to a significant degree. I'm by no means an expert in anything. I don't actually believe in the word expert. I think it's a problematic term, but masking, monotropism, and the double empathy problem. I think they're the three key things. Lots of things fall under the banner of those things in terms of communication, in terms of sensory processing, in terms of praxis and and motor movements and and like there are lots of things that come under those things, but I think they're the three kind of headlines that you can encapsulate everything with.
Jayson Davies
All right, so there you go, everyone listening. One hour, one hour, one hour. Go go learn from Karen and then take that back to your back to your school and say, hey, I want I want to provide a professional development, you know, for for everyone on campus. I mean, you could, if you really need to, maybe narrow it down to less than the entire campus, right? Maybe you're focusing on those individuals who work with autistic children, but ideally, it'd be great just to provide this professional development to as many people on campus that you can. So, yeah. All right, we're we're getting closer to the end of our time together, but there, whenever, especially in school-based occupational therapy and any occupational therapy, the mention of ABA just like makes people cringe, and I'm wondering because you have mostly you just have such a vast network of autistic individuals that you that you work with that you know. Why is it that ABA has become kind of like the go to, or I mean, really, it's becoming called autism autism therapy. Like, why has that become a thing?
Kieran Rose
I think ABA is very. Its marketing is superb and has been superb for a very long time. I think it's the way that it markets itself plays often to the grief that parents feel and the stigma that other professionals experience towards the idea and the concept of autism, stigma plays a massive role in all of this. And and I think the ABA industry preys on that. So they prey on fear, basically, that if your child doesn't do X, Y, and Z by certain times, their life's going to be over. You know, like it's not worth living, and and so so it is your role as a parent to dive in and rescue your child. I think certain charities and organizations, not naming any names, in the US have played a massive role in the promotion of that ideology as well. The kind of the crisis, the grief, the negativity, the stigmatize you, the you know like it's out to get you and it's going to steal your children and all of that kind of narrative. And what I don't want to do here is kind of dismiss the very real fears that parents often have, particularly parents of autistic children who have co-occurring physical disabilities, who may be non-speaking or minimally speaking. Like those children are are have a very specific need set, which often isn't met. So that often comes with that that kind of extra panic and worry and fear. And as a parent, we all worry about our children and what what's going to happen to them when we're not here, you know. But for children who have very high support needs, that that becomes a very very overriding factor. So I think ABA has specifically preyed on that. I don't even know if it's done it intentionally. It's it's there's a market force going on there as a capitalist kind of thing, but but there was a here's a huge gap in the market. Let's fill it by fixing these kids. Basically, the irony of that is that you know ABA has been around since the '60s. It's more formalized since the '80s. But if it actually worked, we wouldn't have any autistic children left. So you know, like, like, like it, like, like it's, it's not actually what it does doesn't do what it says on the tin. And what also we don't know with because there's no there's no real meaningful long longitudinal studies into the effects of ABA. You know, like we don't know in terms of life outcomes how much this plays a role. What we do know anecdotally, and and sometimes with with academic research, is that behaviorism is a fascinating beast because behaviorism preaches that it understands human behavior, and actually, often I think it completely misunderstands human behavior. It simply oversimplifies human behavior often. ABA does this specifically, you know, like with the four functions, and you know, it's it's a very very superficial narrative, and it hasn't moved with the changes of adopting these more contemporary narratives that we're seeing now coming out of research. You know, the the understanding different attentional styles, different motivations for communication and behavior and socialization; those things are all missing from the literature around this. So, I think it's become easy for other people to grasp onto because it's sold as the fix. Firstly, but second, it plays into the narratives that we've been speaking to, particularly education narratives around the idea of conformity. You know, the idea that you do things in a particular way, and if you don't do it in a particular way, you're a problem, and your life is going to be over, and you're not going to get a job, and and things like that. And so, it all kind of feeds around this this kind of like a whirlpool of things that it's feeding into, and I think I think that's why it's so got such a firm grip on on everything, and it's infected everywhere across the world, in terms of either ABA specifically or behavioral frameworks, and we have PBS and Positive Behavior Support in the UK, which is an ABA behavioral framework, which is utilized in health and social care and education, and so literally the ideology is everywhere. But it's all about actually control and conformity and keeping people in their place, and I'm not an advocate of doing that at all.
Jayson Davies
Yeah, yeah. And and you you talk a little bit about the fear and playing on the grief that that parents might have, and we did actually have have some questions about that. Unless your listeners really asked about how families emotionally process autism identification and how practitioners can communicate in ways that honor acceptance, grief, cultural values, and concerns about stigma. So, I think you kind of discussed this a little bit, but anything else you want to talk about that?
Kieran Rose
Yeah, I just I think you know, as an autistic person, as a professional, we have to hold space for the fact that people hold fear and that stigma has played a role, massive role in in why they feel the way that they do. We also have to hold space for the fact that autistic people don't just spontaneously manifest in families. That actually there is a lot of there are a lot of unrecognized autistic parents who may kind of superficially recognize that they are, but don't have the capacity to be able to explore that because they're busy supporting their children, and so they will have experienced lots of stress and trauma. They will have experienced masking, and all of those things will be very, very real for them. They might not cognitively, consciously be aware of that, but that will have still happened to them, so we have to hold space for the fact that there are intergenerational dynamics going on here. That there, there is, there is obviously all of this cultural and social narrative around autism and the stigma that's kind of fed all of that. And so, holding space for that is really important. But it's also really important that people don't get trapped there, and that we support parents to move out of that space. And that isn't me saying that again. You know what many parents often do, unfortunately, is is oversteer again. Use that term again, where they go down. They go from like here's this massive deficit and disorder narrative. We're going to stop using that one, and we're going to go down the superhero route. You know, and it's like, look at my child with their super, and it's ridiculous. Like it's, we need to be looking at this from a neutral perspective. That autistic people exist, non-autistic people exist, ADHD people exist, black and brown people exist. If we were, if as a as a species we were better at actually looking at things neutrally and not loading them up with stigma and fear, things would be a lot better for all of us. And and they're the conversations that we actually need to be having with parents. We need to validate their experiences. We need to recognize the things that they have gone through. We need to think about if they're fearful of their child's future. Is that also because they were fearful of their own the future when they were children? You know, like the things that they grew up in. So we take on a role often as therapists, and I mean, like mental health therapists. You know, where you're having to psychoeducate, you're having to hold space for people's trauma, you're having. But that's the reality of our jobs, and I think our jobs need to evolve and recognize that this is actually what we're doing now. It's a huge. Part of what we do, it's not just about we go into a house or we go into a school and we work with a child. There's a whole system around that child that also needs to be educated. It needs to be understood. It needs to needs to be taught. It needs like like there's so much that needs to go on there, and and neuroaffirming practitioners will recognize that, and we'll be working towards that. And you know, no one's ever at the end goal of being the perfect, perfect professional. But that's the pathway that you should be on if you want to be an affirming practitioner: is recognizing the interactions of all these systemic layers, and then realizing that parents, and then autistic people, and children are right at the heart of all of these systems, and those systems are soaked in stigma. So, how can we destigmatize as much as we possibly can, and create a bubble of safety around them, where they can feel a little, have a little capacity to to learn, to feel safe, to explore, to be creative, to think? You know, like they're the things that we really, really need to be doing on that very macro level, and then we need to be advocating out obviously for all the other systems as well. So, so yeah. So I don't actually know if answered your question there, Jayson, or if I went off the complete tangent. But I feel like it went in a big loop.
Jayson Davies
but in this whole conversation, though, like you know, I'll apologize to everyone listening because I think that people probably started pressing play, thinking, man, there's going to be a bunch of things that I can do with my singular student, and I think what we've learned today is that yeah, there are things that you can do with your singular student, but there's also a lot more that you can do from the macro level. You know, supporting the entire school to better understand autistic students, not just trying to support your individual autistic students that you work with on your caseload.
Kieran Rose
Absolutely, and that's big. One thing, one thing to add there to kind of to make it a bit smaller, is because of that can be really overwhelming to think like all of this has got to change, like, and it does. All of this needs to change, but that can also leave us powerless. So one thing I always come back to is that if we look at this this need for change as a civil rights movement, and you think about other civil rights movements that have been that have been happening in the world for decades, and how in some ways they have moved forward immensely, in other ways they've stood still. Like change has not happened in so many other ways. So the same things are happening here, and we are right at the beginnings of understanding this and recognizing this as a long-term war, basically, or a game, or however you want to look at it. That that we need to look at objectively and say, I, as an individual person, cannot change the world right now. There is nothing I can do to influence everything, but I do hold a pebble of power, and that pebble of power for some people might be like a little, little, little bit of grain of dirt. For other people, it might be a boulder. So when you drop that pebble, and what that pebble is, is actually you. It might be, I don't know, if you work in a school, it might be that you model to everybody to stop slamming doors. That might be one thing that you can change, or that you influence the score so that they're not having buzzers going off when there's a change of lesson or a bell going off or things like that. Like like just little simple things. Like they're little pebbles that you can drop. You make a change, and you find someone else who holds a pebble of power that wants to make change as well, and then they drop their pebble, and then all of a sudden you have ripples converging. And what happens in water when ripples converge? Chaos. And the more pebbles we drop, the more chaos there is. The more change is going likely to happen, and then the ripples get bigger and they turn into waves. So, so one narrative that I always push for in this is something that I call islands of safety, which is anybody that's ever done anything in kind of mental health, you know that that's that's a term that's often used there. And basically, what that is is that you have a child who has been dropped in the middle of this really problematic and flawed system and this this environment that is effectively harming them. And there is very little you can do to influence change in that, but what you can do is hold space for that child, and that might mean you only might be with that child like for an hour a month or an hour a week. But how much safety can you create in that short period of time? That might mean that you go in with targets and objectives that other people have met you, given you, and you rip them up and you say no. What I'm going to do is validate this child for an hour because that's the only time that they get validation. That this is an opportunity maybe to explore what it means to be autistic for them, to explore their sensory profiles, explore their communication identity. Like there's so many opportunities there. It might be just a space where you just come together and you just sit and you both look out the window together for an hour. Now that doesn't sound like work, but that might be meaningful time for the child that you are working with, who is going to go out of that room with you or out of that space with you, back into an ocean of unsafety. So, holding space is sometimes the biggest thing that we can. Do even though it feels like we're doing nothing, so you know, and that's hard advocating out to your bosses and to teachers and to parents or whatever that that's what you're doing is going to sound ridiculous, but that could be the difference. I'm going to go back to those statistics I talked about at the beginning. That might be the difference. You, as someone who created an island of safety, might be the difference between them being alive and dead by the time they're 40, and that sounds like a dramatic thing to say, but that's a very, very real thing to say. All of us, all humans, we remember the people that were kind to us. We remember the people that hold space for us. We remember the people that were good to us, and if you can be that person in a world where they have very little of that, where they have very little understanding from other people, where everything is pressure, if you can be that person for them, you could be the difference between them being alive and not, and that's huge.
Jayson Davies
Yeah, yeah, I 100% agree. You've got that permission, you know, to to rip up the goal for this week, and you know, just focus on that student safety. You know, kids have to want to go to school before they're going to actually, you know, learn from school. They've got to feel safe at school before they'll learn at school. And as you've already talked about, a lot of kids aren't feeling safe. They're not feeling like they want to be there. And so, if the OT is the person that can help promote that, and maybe if the OT is the person that can help drop one pebble into another classroom to help that classroom understand that.
Kieran Rose
yeah.
Jayson Davies
that that's that's big, that's really big, it's huge, yeah. Karen, I'll ask you one final question, and and that is, are there any questions that you're expecting today that I didn't ask you, or that you didn't see on the list of questions that I sent over you, that you were actually kind of shocked that you know what a school-based OT didn't ask me this. What the heck?
Kieran Rose
Um, no, but the one question which you haven't asked, which I thought was absolutely fascinating, was the one about what does the autistic community think of occupational therapists? And I thought that was such an like I've never ever seen a question like that before. Never like that's such a reflective question, and I think it was such a beautiful question as well because I think I've already kind of alluded to the answer in terms of what I think. That's why it works.
Jayson Davies
but yeah.
Kieran Rose
Yeah, and I think so. I think firstly, like I said earlier, occupational therapy is the most important profession in terms of any professional that can engage with an autistic person, and I think speech and language is is slightly secondary to that. Apologies to any speech and language. Very important, but just not quite as important. Yeah, you're all important, but you know, like, but I think it's a, it's, it's a fundamental mental role because of the fact that the framework that occupational therapy comes from is a justice framework, and I think that's that's that's fundamental to any work that you do. If you, as an occupational therapist, have drifted from your justice framework, then you need to drift back again. It's really important that you do. The other thing that I was going to say, because I think this is a really interesting question, and you know, Jayson, I do a lot of work with the Star Institute and Virginia Spilman, who kind of runs the Star Institute. We have this conversation all the time. Is in that occupational therapists are really. I'm going to go back to marketing again. You're really bad at marketing because nobody knows what you do. Yep. Like it's like a mythology around like like what do they do? Is it a bit woo? Is it a bit this? Is it a bit that? And I think one thing I think that would better serve occupational therapists is a greater promotion of the fact that there are different types of occupational therapy and different styles of occupational therapy and different roles within occupation. Because I think autistic people often look to occupational therapy and think, "Oh, an occupational therapy therapist can help me with my sensory stuff. But actually, not all occupational therapies would be able to do that. So, so I think there's a there's there's something there around kind of actually differentiating different roles within occupational therapy and what they mean, and and I think that's really important.
Jayson Davies
Yeah,
Kieran Rose
but I think just overall, I think the autistic community looks to occupational therapy as an allied community, and you know, as as you are a group of professionals who kind of get it and are kind of safer, and there's lots of ableism within all sorts of other professions. Lots of ableism within speech and language therapy, and and and it saddened me to see that behaviorism has started to creep into occupational therapy. It's not unexpected, but it really kind of saddens me because I think that is diametrically opposed to what occupational therapy is. So, if anything, I would say that that if you don't want to lose the the good feeling that you get from autistic people and the autistic community, then then reflecting on that. And thinking about, well, actually, why are we so highly thought of, and why, out of all the professions, is that the one that's usually the first one that's first turned to? The safer profession, the safest profession, the justice profession. I think getting back to the roots of that is an important thing that occupational therapy should be doing.
Jayson Davies
Wow, justice, justice. That that's that's not the answer I was expecting. Like, you know, research maybe or yeah, that we get it right. We we understand autism a little bit better than some of the other professions. But justice is that's big. That's big. Thank you for sharing that. We appreciate that.
Kieran Rose
You're welcome.
Jayson Davies
Yeah. All right, Kieran. To wrap this all up, where can everybody go to learn more about you?
Kieran Rose
Oh, my website really. You can follow me on social. I'm on pretty much every social media platform, but I'm not very good at social media. I core everything together on my website, so there you will find training, lots and lots of blogs and articles and resource free resources and things and signposting and stuff like that as well. So that's kind of the hub of everything that I do. So just www.theautisticadvocate.com.
Jayson Davies
Absolutely, and really do go over there and look at his trainings. If you one time today were like, man, Karen said that perfectly. I need to learn more from him. Everything he says is golden, right? Go over there. He's got his trainings up there. They even says right on the training pages. Like I try to keep them as cheap as possible, and he really does. And so they are very affordable. I'm not quite sure how how long is your average training ish. What do you try to do?
Kieran Rose
Oh well, I have a big, I have a big core training that's about six or seven hours long, and comes with a massive round of resources. But generally, kind of between the one to kind of two hours mark, and I've got a, I've got a few more that will be coming out over the next few months. So some around employment, others around kind of masking, and I've got the training coming on islands of safety, actually. Yeah. So that's that's all framed up with ecological systems and stigma and stuff as well. So, so yeah, just little stuff like that.
Jayson Davies
But is it the inside of autism? Is that the longer one?
Kieran Rose
That's the big one. Yeah, yeah,
Jayson Davies
yeah, and very affordable right now. It's listed for under $100, even way less than that. So go check it out and learn more from Karen. And yeah, find him on all the podcasts that you can. Find him everywhere that you can because he's got a lot more to share than we can do in this overtime hour and 12 minutes that we did. So we appreciate it, Karen. Thank you so much for your time, your energy, your knowledge, all the experience that we that you bring. We really appreciate it.
Kieran Rose
Appreciate you too, Jayson.
Jayson Davies
Thank you, Kieran. Thank you so much for this, for answering the tough questions and for being able to see that internal struggle that so many school-based OT practitioners are having as they try to navigate the school-based OT system, this was definitely a conversation that I did not take lightly, and I'm really honored that you allowed us to bring our real questions to you and answered in such a kind and genuine way, we really appreciate that. The autistic students that we work with, that that we are trying to help navigate this tough world for them, that wasn't built for them, and that data that Kieran shared with us today isn't just sobering. It it's a call to action: suicide, stroke, and heart attack-you know, those are the leading causes of death in autistic adults. And the work that we do in that one half or that one hour a week that we have with our students, the safety that we can create in that time, and the validation that we're able to offer within that short period of time-it matters, and it matters more than we know. So, if you leave today with nothing else, please leave with this. You have power. Use it wisely and use it kindly. Thank you so much for tuning into this episode and asking your hard questions. Keep asking those difficult questions and keep sitting with yourself and answering those questions. And thank you for caring enough to keep learning and to show up every day for your students, for your autistic students, and all the other students that you serve, being a school-based OT practitioner is not simple. It is tough. It sometimes feels like we are getting nowhere, but know that you are. Every moment that you spend with them, you are helping a student that that needs that support. That that maybe needs someone to actually care about them, genuinely care about them, and hear them and understand them. I'm Jayson Davies, and this has been an episode of the OT Schoolhouse podcast. You can find Karen over@theautisticadvocate.com, and I really do hope that you take the time to explore his work. It really is amazing. Check it out, theautisticadvocate.com. We'll see you next time. Take care and keep serving those students that you see at school.
Amazing Narrator
Thank you for listening to the OT Schoolhouse podcast. For more ways to help you and your students succeed right now, head on over to otschoolhouse.com. Until next time. Class is dismissed.
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