The NottAlone Podcast
Real talk about mental health with Dr Orlaith Green and Dr Maddi Popoola
Series one, episode five: Understanding neurodiversity and mental health.
Episode description
In this episode, Maddi and Orlaith are joined by Rachel Deane for this conversation all about understanding neurodiversity and how it impacts mental health.
Discover what a ‘social rulebook’ is, why navigating change can be especially challenging for neurodiverse people and how to put yourself in a child’s shoes to understand their perspective. We focus on young people’s experiences with autism and ADHD to explore building resilience as a neurodiverse child and we have an in-depth discussion on how society needs to change to better support everyone.
Transcript of episode
[Music] Whatever you’re going through, I hope you know you are not alone…
Maddi: Ey up! Welcome to the NottAlone podcast. I’m Maddi.
Orlaith: And I’m Orlaith.
Maddi: We are the co-founders of NottAlone. We’re both also educational psychologists, and we’re both parents. We are so thrilled that you’ve clicked onto this podcast to join us as we delve into all things mental health and wellbeing.
Orlaith: Let’s face it, we all encounter challenges and tough times in our lives, so we want to talk about these experiences in the hope it helps others and reminds you it’s okay to not be okay. No matter what you’re going through, you are not alone.
Maddi: We will be having real conversations about mental health. Some topics will be challenging and may be upsetting, so please do listen with care.
Orlaith: Welcome back to another episode, and today we’re talking about neurodiversity and mental health. We’ll talk a bit about autism and ADHD today, and we’re really interested in finding out what is it like to be a young person with these needs and what challenges do you face, and most importantly, what helps. There’s lots of different language and terminology. We’re not world experts. We might get things wrong, but we want to open up the conversation.
Maddi: And our guest today is the wonderful Rachel Deane. We are going to cover things like anxiety. So, anxiety is a common experience and, the additional stresses that being neurodiverse might bring on just in daily life and how that might create overwhelm. We’ll be talking a little bit about social rule books and how we can use tools to support neurodiverse young people when they’re experiencing change and, just really trying to get underneath and understand the child’s experience.
Orlaith: We hope you enjoy the conversation.
[Intro music ends]
Orlaith: Hello, everybody, and welcome to our conversation today about neurodiversity and mental health. We have another very special guest with us today, Rachel Deane, who’s the manager of the Neurodevelopmental Pathway and Support Team in Nottingham City.
Maddi: Orlaith, you did very well to get that right. Well done.
Orlaith: Thank you! We’re really excited to have you here and to hear about all your knowledge and your experience of working with children and young people.
Maddi: Rachel. So! tell us a bit about yourself. So, tell us a little bit about your job. And I guess without getting into too much technicality, tell us a little bit about the young people that you serve.
Rachel: So, I’ve been the team manager for just shy of five years. As you say, the pathway for Nottingham City children or registered with Nottingham City GPs, and passion is really disability. So historically, I would say, built my knowledge and understanding from working with children. So, interacting with children, being a family support worker and then kind of working my way up to a management position. And I think the team would tell you that if I get a chance to get on the phone to a family, I’ll keep them on for like an hour because it’s rare now in a management position I actually get out and see children.
Orlaith: You like to chat! That’s what I like to hear.
Rachel: Yeah, I like to chat and feel that you’re making a difference. And I think that what we all go into these jobs to do, it’s biggest thing for me.
Maddi: What a lovely thing to hear. So, for the listeners who probably don’t may not even have an understanding of what a neurodevelopmental support pathway is. Did I say that right?
Rachel: Yes.
Maddi: I did?
Rachel: Yeah, yeah.
Maddi: Get in. So, talk to us a little bit about what that means. If you’re a child who needs to be on a neurodevelopmental pathway, what does that mean?
Rachel: What I really want to make really clear is that every child is unique and every child has strengths and differences. So what we’re trying to do is turn the table . So we want positive language because we know that all children need that positive reinforcement all the time. Children that may be neurodiverse will have differences in their social interactions. They may have strength, so they may be able to hyperfocus on certain things, but they may have challenges in other areas, but they may have both at the same time. So they may excel in one area, but then because of, maybe queries around their attention levels of hyperactivity and impulsivity, they may not be able to keep on task and therefore that is starting to be detrimental within their, world. Maybe at home, or
Maddi: or at school.
Rachel: or at school. And school is the big thing really.
Maddi: So when we use, I guess when we’re talking about neurodevelopmental, I think what we’re saying is a child who may have a diagnosis of autism or attention deficit hyperactivity disorder
Rache: Yeah.
Maddie: Better known as ADHD.
Rachel: Yeah.
Maddi: Yeah. So I think what we’re really interested in today is how those young people, and I guess it’s really difficult because they’re all individual people, as you’ve said, with unique differences and challenges. We’re obviously here to talk about mental health.
Rachel: Yep.
Maddi: How do you think, a young person who has, let’s say autism, for example, how do you think that impacts on their mental health? How do those two things interact?
Rachel: Yeah. So I think you’ve got to always try and put yourself in the position of the child. So 47-year-old, middle aged woman, it’s quite hard to put yourself in a position of a six-year-old again, but that’s what you’ve got to do. So what do I feel? Or what do we feel when we’re told that’s not right, you’ve done it wrong, you need to do it again, you’re gonna lose your break. No, you’re not going to that party because your room’s messy, you haven’t tidied it. But I don’t know where to start. And that’s the issue. So going back to how does that feel? If your boss was telling you or your friends were telling you that you’re not good at something, it creates that negativity and then that voice on your shoulder of I’m not good. And then that starts to play out. I’m different, I can’t achieve. And I think that’s the biggest challenge for me because we all have our challenges, but for somebody that may be neurodiverse, it needs breaking down. For example, a sequence such as come downstairs, wash your hands, wash your face, sit down at the table and you know, choose what ketchup you want, or you know, mayonnaise. It’s too much, it needs breaking down and almost that scaffolding and building. And that takes time. So things maybe take much longer to learn, those skills of memory and functioning how society wants us to function.
Orlaith: Absolutely. I think lots of children who experience that overwhelm that you’re talking about talk about feeling really anxious. Children that I’ve worked with, they talk about feeling really anxious about things that don’t necessarily make someone else feel anxious. And a lot of that is in the physical environment, isn’t it? The
Rachel: I think that’s difficult. I think that that’s part of the issue. If you have challenges with your social communication style being either your language is accelerated to your peers, so, you’re not understood because your language is too advanced, or the other way that you literally haven’t got the words, or you feel so overwhelmed that you can’t get the words out. And I think for me it’s going to the why all the time. It always comes back to the why. If you don’t understand something or you haven’t heard, then that creates anxiety. But if you may be or you are diagnosed as being neurodiverse and your mind has wandered somewhere else while you should have been listening to the instructions for homework, for example, that in itself is gonna create anxiety. So then you’ve gone into this cycle and then particularly in secondary school, you’re then moving on to a next lesson. And that’s really hard. That transition for neurodiverse children and young people is those transition s, the brain needs time to catch up and digest. And that isn’t going to be between bells necessarily. And I think that’s what’s really hard. And I think the toll is often with families where maybe a child has done a day at school and they literally can’t remember what they’ve done. So when they say or parent says at dinner time, what have you learned today? I don’t know. And they genuinely don’t know. And then the toll may be with parents and carers and the young person where they have to literally repeat the whole of that school day in the evening for it to be able to…
Maddi: To process, almost.
Rachel: To process.
Maddi: So I think what I’m hearing, and please correct me if I’m wrong, is that I guess a child who is neurodiverse, like being a kid is hard, right?
Rachel: Ohh, yeah.
Maddi: It’s hard anyway. And then if you have the added mix or source of neurodiversity, wherever you are on that spectrum, it’s like an added challenge into the pot because of your social interaction functioning or your cognitive functioning or your functioning within the sensory world kind of being like an added extra into something that you have to then mentally deal with throughout.
Rachel: And it’s exhausting.
Maddi: Right, right.
Rachel: It’s exhausting because children who are neurodiverse are clever. They learn the script. So they learn the script of, to interact with that set of girls or that set of boys, t he current topic is, and I’m gonna sound like really old, let’s just say K pop. But then it moves on to something else. But they’ve learned that script and it’s worked for a long period of time and then it.
Maddi: And then it switches up because something else comes in.
Rachel: And then switches up because somebody…. Yeah, so that’s what’s really. And they’re like we were talking about that and I was accepted when we talked about that. And now I have to go and I have to learn a new script. And that’s what’s really hard, the mental agility that’s constantly required to keep up or keep ahead. So thinking about time blindness. So a lot of children who are neurodiverse will have a poor concept of time. So that transition from one classroom to another, may lead them to be internally…AWOL? That’s probably not the right word to saying it.
Maddi: That’s okay. We don’t worry about that here.
Rachel: They in the loos for a lot longer than they should have been because they haven’t realised that they need to get from A to B a lot quicker.
Orlaith: I think it’s important the point you’re making about transitions because I think when we talk about supporting children with transition, there’s the big transitions, isn’t there? Like primary school to second school. And we might think about that, but actually, for children who are overwhelmed by transitions, it’s those hundreds of little transitions throughout the week. From one lesson to another.
Maddi: Even in a day. Right?
Orlaith: From one conversation to the next.
Maddi: Even in one day.
Rachel: It’s weird because again, putting yourself back to that child, I catch myself out all the time. So we recently had some real challenges with some system access. It really was interesting. It changed the way I worked because I try and do too many things at once and actually by taking all that away and just focusing on one thing, I was actually more productive. So again, it’s that allowing that transition and time is precious. And I think that’s something that society – everything’s so fast now. You get the answer instantly. And I think that’s an issue as well, you know, are the demands we’re putting on children and young people… How would we have felt with those level of demands?
Maddi: There’s two really interesting things from what you’re saying. And the first thing is I’m sat here thinking, honestly, I don’t think I can put myself into the position of a child who’s not only a child going through school trying to manage friendships, relationships, everything that comes with that. social media on top of that these days too, because that’s a form of communication as well that you’ve got to then interpret and manage. I don’t think I can put myself in the shoes of somebody who’s got all of those kind of “normal” things and then all of those kind of stresses that you’re talking about on top of that. I find that really hard and it actually makes me feel a bit overwhelmed just thinking about that. It really does. And then the second point was around transitions and do you know, it’s funny, I had a conversation with my daughter today. I was taken to the orthodontist this afternoon and she got in the car. And she said, “oh, I hate school, hate school. I’m not going back there again.! As she does most days. She said to me, “I’ve not learned anything, anything since I’ve been in year eight. I’ve not learned anything at all.” And I said, “well, why, why is that? Like what do you think happening?” She said, “they teach you something for 15 minutes and then they just move on!” And I thought that’s really, that’s actually really interesting, isn’t it, that perspective? Because what you’re also talking about is if every child feels like that, you know, that I’m having to be moved on and moved on and there’s no time for processing and no space. Imagine on top of that then, and you’ve got a neurodiverse need where you already find that hard to go from one thing to another and everything’s then rushed. And again it links back to our school attendance episode, Orlaith, doesn’t it? And the idea that, you know, why are kids finding it so hard.
Rachel: For me it’s about putting things in three different lanes. So what is the non-negotiable, what has to happen on a daily basis for a child to function, the family to function, to attend a school class that you know, you ideally need to be being in school. And then there’s the kind of lane of, does it really matter? So in the big scheme of things, how detrimental is it? So I think we can be really… And this comes back to power and control. If you’ve got a neurodiverse profile, or characteristics that may be indicative of, you may have a very high sense of justice so you may actually be the one who sticks up for everybody else. That could be seen as actually the troublemaker because you’re protecting your friends, you’re protecting your tribe and I think that’s really important about finding your tribe. You know, we’ve had examples of a young person who they were really concerned about in terms of some behaviours about who they were becoming involved with around exploitation basically. And he had a real interest in first world war memorabilia. So his tribe was actually a group of old men that had lived through it, understood it and he could talk to them about what he had learned.
Maddi: His special interest.
Rachel: A special interest! So find your tribe. And everybody’s tribe is different and it moves and it changes and that’s good, that’s how we function as human beings. But again that helps to build a level of resilience. And what I first started saying is that negative, negative, negative if you find your tribe, your special interest…
Orlaith: Positive, positive, positive!
Rachel: Positive, positive, positive.
Orlaith: Exactly.
Rachel: And a neurodiverse young person, adult, young person, child needs. so much more positivity. They need to be praised and given that reassurance. And they may not want a hug, that’s okay. But in your family, an apology or a hug may be, “do you want a cup of tea?” or just putting that cup of tea there. It doesn’t have to be, you know, that’s where we’re all unique, I would say.
Orlaith: Yeah. And I guess what we’re talking about in the whole conversation is anxiety.
Rachel: Yeah.
Orlaith: And you know, we know there’s really high levels of anxiety among autistic people and people with ADHD and people might use different language, talk about it, worries, stress, wobbles. But we’re talking a lot about anxiety. And it’s interesting what you’re saying as well that it feels exhausting. And I think people who are experiencing it and the people who support them, like parents, cares, teachers, the adults can see it and the kids feel it that exhausting.
Maddi: And I think, I actually think it must be really exhausting as a parent too. You know, it’s hard enough, right?
Orlaith: Yeah!
Maddi: And then you know, adding difficulties with social interaction and what that causes. I often when I’m working with a teacher or a young person even, one of the things that is kind of brought up a lot is the inability to identify the intricacies of a social interaction and the stress that that causes because there’s like a constant mismatch or interpretation that then brings on a sense of I guess like persecution or I’m not good enough. And what you’re talking about there is this idea of like you are good enough, you are. It’s about finding your tribe. It’s about finding your thing that, you know, you can do.
Rachel: It’s social scripts and expectations.
Maddi: Yeah.
Rachel: So if you think of things like if you’re going to a birthday party or it’s Christmas. When you’re given a present socially, you’re expected to behave in a certain way. You’re expected to show joy, say thank you.
Maddi: Although it’s well awkward, I just have to say innit!
Orlaith: Yes!
Rachel: Exactly.
Maddi: I hate being given presents in front of people. You know, when you go to in laws at Christmas and then they’re like…
Orlaith: They’re watching for your reaction.
Maddi: They’re watching for your reaction, it’s horrible [laughs].
Rachel: If you feel like that you’re not, you know, the social script, you’re not having to get that book out of that library, flick through it at 500 miles an hour, find that page that says, oh, Christmas surprise, oh, yay, yes, it’s very, very nice, thank you very… You know, you’re not having to do that and your face match what’s expected, you know, show the joy as it. As it were, or the surprise or the…yeah. And that’s why I think a lot of neurodiverse individuals like rhythm. So, they like the rhythm.
Orlaith: Yeah.
Maddi: But imagine being in, I’m just thinking now, imagine being in that situation where, there’s a really good example of being given a present and having to go through that book. Imagine the anxiety that that would evoke in somebody. And the physical, I imagine panic, right? The panic feeling, you know, that all those things you feel perhaps when you’re just about to walk into a job interview or you what we would consider quite a heightened emotional situation – doing a podcast, Rachel! [Laughs].
Rahcel: Yes!
Maddi: Imagine feeling like that ten times a day.
Orlaith: A lot of those social rules, no one says them, they’re not written down, they’re not clear. I remember I was at a talk once, from a lady who describes herself as autistic. And she’s an adult and she’s a successful academic, but she remembers what it was like for her at school and the way she described it, I always remember, she said it was like all the other kids were playing a game and you didn’t know the rules. And so you’re trying to play the game but you’re getting it wrong. And everyone’s shouting at you, saying that’s not the way you do it. But you don’t know the rules. No one told you the rules. They’re not written down anywhere. And it’s just that you’re talking about Maddi that, you know, so stressful, the uncertainty, trying to grasp it. The point she was trying to make in her speech was explaining the rules is one of the most helpful things to reduce uncertainty, to help them understand what’s coming up next.
Rachel: And checking in, I would say. If we’re thinking of something like a demand being placed on school for homework, for example, it’s understanding the why. So if they said they didn’t hear, okay, so you said you didn’t hear, so what do we need to do then? Do we need to make sure you write it down in your book before you leave the class? Yes, that would really help me. Neurodiverse people, they’re the people that know themselves best, and so do their parents. So they’re the ones that are constantly making those adjustments to fit in with society. But actually society needs to bend as well and kind of understand what can we do differently?
Maddi: And I think this is the key point. We create a world, don’t we, in which we have these expectations. And it’s so, I think even more so probably in like the UK and more Western countries. The expectations of the social rules and what we think people should be like. How can we all just be that or that? Does that make sense? Sometimes I think about it and I’m like, you’re autistic or you’re neurodiverse or you’re not. But actually, is that the case? You know, like, is it the case that you’re either that or you’re that, like, what’s the difference?
Orlaith: There’s a fab book, have you read it? Called Uniquely Human. And I just really like the phrase. And it talks about understanding the humanity of the autistic perspective and identity and trying to. Like you were just saying there, you know, listening to their voice, connecting with them, understanding that their perspective is key and the parents are the expert. That applies to all children, doesn’t it?
Maddi: It really, really does. But as you said, as a world and as humanity, can we not just do better? Can we not just do better at bending and changing our perspective of what that experience is like for someone else? I think it’s so hard to imagine. I think that’s where we’re getting it wrong.
Rachel: And I think that’s where, I guess, humanity and rules of society kind of do collide. Because to have a society you need structure and you need rules and you need to conform to keep people safe. You know, that’s why we have rules and we want to go to school or we want to go to work. But sometimes going back to anxiety or how it feels, it can be too much. But what you don’t want is, you don’t want a negative experience to then become somebody’s script.
Orlaith: You don’t want it to define them.
Rache: And you want to therefore understand what happened. So this is just generally kind of almost going back to basic family support. What was different on that day? You know, was it because they ate breakfast or was it because they got on the bus with a friend? Was it because Mum walked them to the bus? Was it because Miss Smith met them at the school gate and said, hi? You know, what is the difference? And we see that big difference between primary and secondary. I think because there are less demands at primary, but also the relationship. There are demands, but the relationships are different because they tend to have one teacher and they get to know Ms. Smith.
Maddi: I guess what you kind of said though, isn’t it, is that for an autistic person especially, you learn the rules, you learn the scripts, you learn and it’s consistent and you can learn how to expect things, predict all those things that are really important to reduce the anxiety. And actually, when you’re in a primary school and they’re the rules most days actually are very similar unless you have a substitute teacher or something else happens and at home, certainly parents can work their best, can’t they, to keep things routine and to keep things predictable. But then when you go up through the education system, you have more and more and more difference to a day and you know, you have more and more and more unpredictability, don’t you? I guess. And I think like you said, the consistency of a relationship, I think children in secondary school can see probably 15 different teachers in a week. And all of those teachers, as well, will have different expectations. So as much as they will try to create a system with the rule book of green is good, red is bad, etc. Actually, what’s green to me and what’s green, say, to Orlaith in the classroom next door are going to be very different things. And for somebody who struggles to interpret the social rules, that’s really, really hard. The only way we can really keep things consistent, isn’t it through language, is through the way that we say things and the way that we say things to support, to support people and the only way we can really do that and be effective is to have relationships with people, to understand them. I really think we need to rewrite the rulebook. I think we’ve written it and it’s not working anymore. We need to rewrite it!
Rachel: I mean, even what we’re doing, so we’re talking as a three and we’re moving our eye contact. To somebody who’s neurodiverse, that may be really, really hard for them. So actually they may want to focus on, look past you, focus on behind which to somebody could interpret that because of their own value basis as being rude. But in some cultures, you don’t look adults directly in the eye. So again, you have in Nottingham, I think we speak something like 24 languages are spoken in Nottingham City.
Maddi: Which is amazing by the way.
Rachel: Which is amazing!
Maddi: I love that, I love this city,
Rachel: All that melting pot of cultures and understanding. So all of these things that are coming together and some cultures and some parts of the world, autism isn’t a word, autism isn’t recognised, ADHD isn’t recognised. And what I would say as well, is I think the medical world is, and we are, always learning every day. Diagnostically, things change. So historically you couldn’t be diagnosed with autism, and ADHD. You either had one or the other. And then the diagnostic criteria’s changed, and now you can, and actually there’s so many crossovers.
Maddi: I think the other thing about it as well isn’t it, is that you’re so unique as a human, and everybody is unique as a human.
Rachel: Mmm. Yeah.
Maddi: Whether you have those neurodevelopmental needs or not. Where we also get caught up in is when we’re thinking about help, right. And we’re thinking about how do we help a young person, say, with neurodiversity, actually, well, what helps Tom is gonna be different to what helps Sally, right? It’s not, just because you’re neurodiverse, it doesn’t mean there’s a blanket, there’s a blanket support packet. I think there are things that we can do differently that would help everybody. And I want to just talk a little bit about what some of those things are. So, say you’re a parent of a young person who is struggling with an experience, say, of getting to school by themselves because the bus is busy, it smells funny, it’s loud, you know. But the only way to get to school is on the bus because your mum goes to work and it’s too far to walk. How can you help that child if you’re that parent, if you’re that mum or dad, what would you do to help?
Rachel: I think for me, it’s probably rolling it all the way back. So, thinking about things like social stories.
Maddi: What’s that, Rachel?
Rachel: So a social story is kind of giving a child or a young person or an adult, kind of the, this is what’s gonna happen, this is what we need to do, and this is why we need to do it.
Orlaith: It’s explaining the rules of the game, isn’t it?
Rachel: It’s explaining the rules of the game! We need to get on this bus because we need to get you to school. As you’ve said, Maddi, how are we going to do that with all of these things that are going on with a child potentially understanding that they don’t want to be different either, you know, they want to fit in.
Maddi: Yeah, of course. Especially, you know, as you’re get into your teenage years.
Rachel: Absolutely.
Maddi: The worst thing is to stand out, isn’t it? In a lot of ways.
Rachel: Of course it is. So what do you do? Well, you can do things a little bit on, on the low, down low, sort of thing.
Maddi: On the DL.
Rachel: So, you know, you can do a little bit, bit covertly. You can, maybe rather than take the car, it may be that the young person is supported with yourself to almost train, it’s almost like that social, that exposure really graduated exposure.
Maddi: Like slowly…
Orlaith: Step by step.
Rachel: Yeah!
Maddi: Step by step doing things bit by bit.
Rachel: And it could start with just, we walk to the bus stop and, we stand there for 30 seconds and then we move away, or it could start with five seconds and it builds up and up and up.
Maddi: I guess what you were saying about everything being so rushed, it just doesn’t fit, does it? You know, like, again, some people need more time. They need more time to develop, grow, get used to things, adjust.
Orlaith: I saw a lovely activity in practise in a school before where they were doing things like social stories and they were doing planning, they were following the routine. But whenever something changed or there was something unexpected, the young man was getting quite anxious about that. So the TA had a lovely way of doing this, where she had a visual timetable, which is, here’s your plan for the day, here’s pictures of everything that you’re doing. And then there was this question mark picture. And every day there was a question mark. And he didn’t know what that was going to be, and it was going to be a surprise activity, but he could see it on the timetable. And I thought that was such a nice way.
Maddi: So there was some control.
Orlaith: Exactly.
Maddi: But some was also taken away
Orlaith: So he could see, you know, so before lunch, so this little boy was in primary school, before lunch we’re gonna do maths and music. And then after lunch there’s a question mark. So he could see, I don’t know what that’s going to be, but I know what time it’s gonna be and I’ll be ready for it. And that I thought was a really nice way of like gradual exposure within a safe relationship. But get used to the feeling of there’s something unexpected.
Maddi: Yeah, ‘cause if the bus doesn’t show up. I hear this a lot with young people, I think often what can happen is you can get that routine down. I’ve got to the bus stop, I look at my watch, I wait for so many minutes. The bus turns up. I get on the bus, I know where I’m sitting, try and get the same seat all the time. Maybe put headphones in, maybe have some calming music in my ears, whatever that process or routine.
Rachel: Even a scarf, if you’re thinking from the smells
Maddi: For the smells.
Rachel: Something that, you know
Maddi: With a nice smell on the scarf or something.
Rachel: Exactly, yeah.
Maddi: But then the bus doesn’t show up. I think where we also go wrong in society is that lack of understanding. So, to me with the bus not showing up, we just wait for the next one. But for that child perhaps who’s going into school, that’s a high stress situation where their anxiety, cortisol levels and all the things that create those physical feelings of stress would have been risen to the max. But they can’t go into school and say well the bus didn’t show up on time, right? Because to them, perhaps someone who’s neurotypical probably wouldn’t understand the stress associated with that.
Rachel: But also I think that the irony is, is the biggest achievement that they’ve had if they’ve managed to work that through is getting to school and then they get detention for being late.
Maddi: Yeah.
Rachel: Let’s not keep repeating cycles. So in the line of work I do we’ll often see behavioural documents that say what’s happened for a child during the day, positive points, but also where there’s been challenges and then the outcome is they need to go to detention. And then they forget to go to detention because that happened over there, you know, that happened at 10 o’clock this morning. So why would I go to a detention at half past two, three o’clock? You have to deal with it in the moment. And I think if something’s not working just generally why’d you keep doing it, you know, And I think we do that as society, it’s like we can be quite belligerent that these are the rules, we will make you conform. I’ve never conformed and that’s probably why I get in trouble all the time. It’s that I need to know the why as an individual. And I’ve learned that actually if somebody isn’t telling me the why because I have to conform, particularly with the job that I do now, I then have to go to them and ask the why but then I have to try and do it in a non-confrontational way.
Maddi: Yeah.
Rachel: So even I’m doing that as an adult. So how is a young person to do that when there’s power and control and there’s status and hierarchy?
Maddi: And when the rules aren’t written for you, you know? The whole idea of societal rules and having social order, et cetera, the idea of buying into that is based on benefit for everyone. And I think when you look at rules that you see no, like you don’t see the why, you don’t see the benefit. And I think all children, young people today experience this. But certainly for, you know, somebody who doesn’t really understand social rules in the first place. And then having to try to change your behaviour and adapt, it must be absolutely exhausting.
Rachel: But then if you’re a child who’s neurodiverse, who is very, very clear around rights, wrong, justice, they will thrive in that. So I went to a school, well we called our playground, Colditz. So that kind of says a lot about the school I went to. And we could only walk clockwise around the school. You had to wear your bag on both shoulders if it was. So we had very, very clear rule. S ome people, and me, I’ll be honest with you, I thrived in that sort of environment because I knew.
Maddi: You know what to expect.
Rachel: Yeah, I knew what to expect.
Maddi: And, and interestingly as well, Covid. Interesting point, right? And I think around, especially for neurodiverse young people, some of that was really pleasurable.
Rachel: Some children, they were living their best life.
Maddi: Living their best life. Don’t have to see anyone, don’t have to talk to anyone
Rachel: No
Maddi: Can stay at home in my room, cam do all of my social
Rachel: They could do all of their social interaction through a gaming device. And that’s what you, you know, there’s a lot of myths around neurodiversity that children who are autistic aren’t very good at role playing, for example. Actually, they’re brilliant, some children at becoming characters in oh, what’s it called that?
Maddi: Fortnite?
Rachel: Fortnite, or
Maddi: Roblox
Orlaith: Minecraft
Maddi: Minecraft!
Rachel: All of those.
Orlaith: Yep!
Rahcel: All of those sorts of things. They love it because they’re immersed in that character and they know the rules.
Maddi: You just made me think about the homunculi. So one of the interventions that we’re taught as psychologists that really work well with neurodiverse young people is actually exactly around that. It’s around creating characters for life. So helpful characters that you’ve kind of created yourself just in a way that you would when you’re gaming, you know, create this little persona of a character that, the boss is late. Right. Okay, I’m gonna get the green goblin from the late tree and he’s gonna come and sit on my shoulder and, and he’s gonna get this tool from somewhere to be able to open my brain and tell me it’s okay. And it, that it is exactly that idea of like real kind of creative thinking and using that to help and support in those anxiety provoking situations.
Rachel: And then you kind of hope that if you are creating those social stories and almost like that mind bank that young people can and start to move those around and across different scenarios.
Orlaith: Yeah. And I think what you’re talking about, which is moving away from a medical diagnosis. So, myths, and if you’re autistic, it means this by this clinical definition. My husband sent me this text the other day and it’s one of those things where we hope it’s true and even if it’s not, we think it’s lovely. So we really like it. Listen to this podcast, and they were talking about the Maori words for autism and ADHD.
Maddi: Yeah, I’ve heard this
Orlaith: Have you heard this?
Maddi: Yeah.
Orlaith: So I’m not gonna try and say the words.
Maddi: It’s takiwātanga or something.
Orlaith: Ahh, okay.
Maddi: So it just means in their own time and spaces.
Orlaith: Exactly. And for ADHD, they give attention to many different things. And I just thought how powerful that the word just describes the way the person is or describes their needs. And it’s so open to connection and people helping them, isn’t it? Because if you hear a definition which sounds very clinical and you are not exactly sure what that means, you disconnect and you feel disempowered as a helper, don’t you? Whereas if you hear in their own time and space, you know what to do, be patient, explain things, give space.
Rachel: A lot of entrepreneurs are neurodiverse because they’ve got that spark.
Maddi: And hyperfocus as well.
Rachel: And hyperfocus. But then they’ve had enough, they sell a business for multi millions of pounds and then they move on to, to something else. But that isn’t everybody’s script. It’s a little bit like the film Rain Main you know, that came out that people thought that to be autistic meant that you did fine line drawings of the you know, the New York landscape. That’s not what it means. You can be amazing at different things and passions and interests and everyone. It keeps on going back to everyone is unique. And that’s what makes us, I guess, interesting human beings.
Orlaith: Yeah. So, Rachel, finishing up with some questions about your perspective. What is your favourite thing about your job?
Rachel: Probably things that have made me cry that in a positive way, when you know, for whatever reason, you know that you’ve had a positive impact on a young person’s journey or the parent or carer feels that they’ve been listened to. I think that’s a big thing for me. I think parents and carers, knowing that we care, you know, there’s been times when I have cried, and I haven’t slept. And there’s some children that throughout your career will always stay with you and you’ll always think, wonder how they are.
Orlaith: That connection stays with you.
Rachel: Yeah. If you’ve had one ounce, old term there or what would it be, one gram now? One gram of influence or positivity, then that’s why we do these jobs.
Orlaith: Wow. Thank you.
Maddi: Thank you. You’ve really made me think. You’ve really made me think today. I don’t know why I find it hard. I just find it hard to, as I’ve said a few times, put myself in a position of how stressful life must be for somebody who is neurodiverse. And you’ve really helped me to think about that, Rachel. Thank you. So, shall we do our last question that we ask all our guests? Rachel, what do you do to remind yourself that you are not alone?
Rachel: I think family is really important. I think the perspective of taking the dog for a walk at night, having that quiet time, sitting together. My little tribe, I guess.
Orlaith: Your little tribe. That’s a lovely full circle for the conversation.
Rachel: Yeah. My little tribe. Because if I can’t do that, I can’t do my job. If I don’t care for my family and me, then, then I can’t do my job.
Orlaith: Thank you so much for coming in today. It’s been an absolute pleasure.
Rachel: Thank you.
Maddi: Thanks, Rachel. We’ll end there. Thank you for listening. I hope you’ve enjoyed the chat. I hope you got something out of it. I certainly have.
Orlaith: Me too.
Maddi: Yeah. Thank you again, Rachel.
Rachel: Thank you very much, both.
Orlaith: We discussed some heavy subjects today, so remember that you can find advice and links to support services on NottAlone dot org dot UK. You are not alone.
[Music] I hope you know you’re not alone…
