Navigating Neurodivergence a lived experience story

Transcript

Transcript

Andy (00:00)

So something that immediately brought me back through, you know, from an intense sensation was just scratching my arms with my nails. But it did evolve into cutting myself and it became quite ritualistic.

Alis Rocca (00:15)

Welcome to the Nip in the Bud podcast. I’m your host, Alis Rocca. And today we are diving into a conversation that is as vital as it is deeply personal. Often when we think of neurodivergence in the classroom, we think of behaviors a child might be showing that could be disruptive. But what happens to the children who aren’t making a sound? The ones who are achieving really high marks and staying quiet and following every rule?

Well, today I’m joined by a courageous young person who is sharing their lived experience of growing up with undiagnosed autism, ADHD and anxiety. In our conversation, we explore the complexities of the ‘model students’ and how academic success in primary school can actually hide a growing crisis with how to be in the world. We’ll be discussing the unwritten rules of secondary school, the dangerous aesthetic of self-harm and disordered eating on social media, and why as a society we need to stop dismissively labelling a child’s cry for help as attention seeking.

This is a conversation about spotting the signs early, understanding the unique challenges faced by neurodivergent girls and how we can better prepare our children for the shifts that life throws their way. Whether you’re a parent, a teacher or a young person who feels seen by this episode, thank you for listening.

Welcome, Andy, and thank you so much for coming onto the Nip in the Bud podcast. Can we begin, oh, you’re welcome. Can we begin with you telling us about yourself, specifically about your diagnoses, what they are and how you came about getting them.

Andy (01:48)

Thank you for having me. Yeah, absolutely. So I think the first mental health related diagnosis I got was around my mid- teens, I think it was 15 or 16, and that was a mix of anxiety and depressive disorder. And as I went through my later teens, relationships and friendships that I had, I had a growing suspicion that I might be neurodivergent. And it led to me seeking an autism diagnosis, which I received in 2023. And then I’ve just received an ADHD diagnosis as well.

Alis Rocca (02:38)

Thank you. And how does that sort of fit into your journey through school? You said you sort of had a sneaking suspicion. Can you tell me about that?

Andy (02:48)

So in terms of when that started, well, honestly, it came really late for me because I didn’t present in the very narrow stereotypical way that we think of autism or ADHD. I know, there tends to be quite a focus in terms of representation and ideas of how it manifests in terms of, you know, it being sort of a boy related issue and also just presenting these really specific ways like obsessions with trains when it comes to autism or it might be, you know, not being able to sit still and behave well when it comes to ADHD and those weren’t things that were in any way representative of my experience. So it really was much later in my teenagehood and my journey with education that it even came to me as a possibility, sort of around my later years in college. Throughout my entirety of mainstream and kind of core education, I was completely unaware that this might be the case for me.

Alis Rocca (03:51)

Okay, so let’s step back into your primary years. So what are your memories of being in primary school?

Andy (04:10)

I remember having a really great experience in primary school. Things felt like they made a lot of sense to me at that time. I understood the systems, social and academic. I had good relationships with my teachers, staff and my friends. And I would say I was a very engaged, fulfilled child within that environment. I participated very happily in extracurricular activities like the school play or learning musical instruments and I think I was not necessarily always the very top of the class but usually either first or second or third when it came to the academic measures. So I look back on that with a lot of happiness and nostalgia.

Alis Rocca (05:07)

You talked just then about how you understood the systems, what did you mean by that? Could you just sort of elaborate on that a little bit?

Andy (05:16)

I think that they innately made sense to my brain. I was raised to trust and believe in authority figures, so teachers and staff. And because I got on well with them and because I was doing well in lessons, it all made sense in that regard. And I also grew up having a few sort of close friends in primary school, but also being quite friendly with a wider group of people in my class, in my year group. And that also made sense in terms of what I saw represented in the media or whatever. And so it all kind of matched up to what I expected. And that alignment was really nice as well as it also just being innately positive experiences.

Alis Rocca (05:54)

Yeah, so you had friends, you had that social side, you were doing well in school academically, you sort of fitted in with the relationships with the adults there. Can you remember any challenges? Were there any challenges that you felt that might have made you slightly different in the way that you behaved in primary school?

Andy (06:20)

Yes, I mean, I would get called the weird kid. Sometimes I remember that being something I thought about myself and that was reflected in the views of my peers. But I don’t think it was a condemnation or a sort of tool for isolation. It just felt part of who I was in the same way that I was dramatic and outgoing and bossy too. It was just part of different things that made me up. It didn’t feel like sort of a singular brand and therefore I was untouchable. So there was a difference I think was being noticed in how I behaved, but certainly not enough for people to not want to be friendly or friends with me.

I also have got allergies which I’ve had all my life so that set me apart a little bit in terms of school, not that I think it gave me much of a complex, it just meant that I knew to be more cautious. And I also suffered quite badly with eczema as a child. It could be really severe at times. And that was sometimes a challenge in terms of, I would sometimes spend longer in the medical room than I would need to because I was going there to get relief from my eczema in the form of ice packs but then I was just having a good time with the nurse and enjoying their colouring books or their ‘Where’s Wally’ books or whatever.

Alis Rocca (08:00)

What did the primary school do well for you?

Andy (08:06)

So perhaps in that way. They certainly recognised my strengths and allowed me to really embrace them and excel. So I’m someone who’s grown up speaking Spanish, and Spanish was one of the lessons that we had in primary school. And so the teacher recognised that I was very good and allowed me to step into a bit more of a leadership role and sort of be her teaching assistant and help kids understand things that they were struggling with. They noticed that I really, really loved acting, singing and dancing. And so they encouraged me to pursue the school play. In terms of the medical room visits, they created an incentive for me to not go there unnecessarily and said, if you cut down on the visits, we’ll let you play piano for the school in the assembly, which was something I loved because as much as I’d be little bit nervous before doing anything, I did really enjoy being on stage, being in that spotlight and doing something that I felt like I was really good at. They also were quite relaxed about uniform at the time that I attended, which meant that, you know, especially like during summer months, I wasn’t put in some like really stiff white shirt and like proper skirt or trousers, I was able to just run around in a basic white t-shirt and some little green shorts that we’d found that kind of matched the school green. And that was really nice to kind of feel like I had that freedom to move and yeah, be active.

Alis Rocca (09:49)

Brilliant. So it sounds like they really took the time to notice who you were as a person and make those relationships and then celebrate the bits that they noticed and that you were good at and that sort of helped you through your primary years really, through any sense of difference. It just made you feel at home there. Is that right?

Andy (10:12)

Yeah, yeah, definitely. I think there’s sort of a much closer relationship that I remember having during primary school with teachers, probably because there were only, I don’t know, maybe 20, 25 max students in a class and you’d see that class teacher quite a lot compared to a secondary school. And then there’d only be three classes in that year, but in that year group. Again, you’ve got that close relationship. So I felt like I knew more people and they really knew me. And there was this kind of collaboration, which was really nice.

Alis Rocca (10:48)

Hmm. So again, it goes back to what you said before really, doesn’t it? That the actual processes and the systems, the rules worked because it was smaller and more consistent and you had those relationships. Let’s think about the secondary years then, because obviously that all tends to change in most secondary schools. They’re bigger, greater numbers of students, and more change of teachers. Tell us about the transition first of all. How did you transition from primary into secondary? What went well and what didn’t go so well?

Andy (11:27)

Yeah, so it was talked about, you know, as a transition, they were certainly preparing us for there being changes. For me, it’s obviously a bit hard to remember because this was when I was 11 and I’m adult now, but I think that I remember the focus being more in the kind of academic changes and these kind of formal systems that were going to change and talking about how things were going to be harder and more advanced, all this kind of stuff. And I have to imagine that I would have kind of switched off if I’m being honest, because as I say, in primary school, I tended to get by quite well academically. I probably would have assumed that the same would continue because the way that my brain works, particularly with my autism, is it tends to use previous data to inform future predictions. So I think I would have been thinking: ‘Up until this point, I’ve been doing all right. I’m probably going to carry on doing all right. I can’t see why it’d be that different. I don’t really need to worry about this big change’. Now, that’s not to say I didn’t recognise it as a transition. I was very excited about this new step into teenagehood. And I even started using a different name from starting my secondary school years. It was one that my parents were going to call me and I’d found out about. I was like, oh, I am actually going to use that.

And so it was it was something that I think I was quite excited about from a sort of growing up perspective, but not something I felt very worried about or, you know, unprepared for, particularly academically and then also I think probably socially because, as I say, again, I was using my years of primary school experience to inform what I believe my secondary school experience was. And I thought, well, I’ll just have, you know, one best friend, a few close friends, and I’ll be friendly with other people. And I can’t see any reason why that won’t be the case.

Alis Rocca (13:31)

And what was the case? What was it like when you stepped into secondary?

Andy (13:37)

Really different, very very very different. It’s, it was sort of like… I think it’s best probably illustrated by the analogy of going from the warm kiddies pool in a a leisure centre to the cold adults pool, in the deep end, because you know I…

Alis Rocca (13:57)

In the deep end, out of your depths.

Andy (14:05)

Very much out of my depth, very much a freezing shock of water! There was this sort of induction day during the summer holidays between year six and year seven that we all went to do relevant paperwork type things and learn about what form group we were going to be in, but also to kind of get to know our fellow year and classmates. And I went along introducing myself with my brand new name, with my brand new phone number because I’d just been given my first little brick phone from my parents because I was going to be travelling to and from school on my own, and thinking, my God, I’m going to start my first day of secondary school with so many friends and they’re all going to be calling me by my new name. And it wasn’t like that at all. I didn’t get a single text. The mentality of, you know, socialising or friendship was incredibly different from primary school to secondary school.

There was so much more toxicity, cliques, you’re friends with us, you’re not friends with us. These kinds of different rules that made it really, really difficult to navigate. And yeah, I found the whole change very difficult, but certainly initially trying to understand how it all worked. Yeah, it was tough.

Alis Rocca (15:30)

So real complexity is a good word to use there. And what else did you find different? So the social side of things was just not making sense to you. Was there anything else?

Andy (15:44)

Yeah, there was definitely a sort of belief system or understanding around teachers, which was very difficult for me to get to grips with. And I think I really got to grips far too late. So as I say, you know, I was raised to trust and believe in authority figures and respect authority. You know, you wouldn’t get socially ostracised in my primary school for being like a teacher’s pet or that kind of thing. But that wasn’t the case at all in secondary school. It was very much socially frowned upon to be pally with teachers, to snitch, to be a nerd, any of those things. So that was a really difficult thing for me to break out of in terms of the mentality because they felt like authority or, you know, being tied to that really felt like my anchor. They were kind of my guiding moral system, right and wrong. So coming into a space where

Alis Rocca (16:50)

Yeah, yeah. And as you say, that had worked before, that had worked in primary.

Andy (16:57)

Exactly, yeah for like six years. So coming to this suddenly, that comes with really very real social consequences was incredibly difficult to navigate because it went against something that you’ve kind of learned and believed for so long. But if you don’t, then, you know, you’re really screwing yourself over socially. So that was a really difficult thing to navigate. I think the academics did change quite a bit. There was a lot more focus on homework. It was less kind of one-to-one support from teachers because it’s not really designed for that, there’s not really the capacity.

Alis Rocca (17:36)

How did both of those things impact you, the extra homework and the less one-to-one?

Andy (17:43)

I mean, the extra homework was really tough because my ADHD means I really struggle with self-led learning. Executive dysfunction means that, you know, motivating myself to sit down and complete something where there isn’t that kind of urgent or immediate or like present pressure is pretty much impossible. It’s very different for me to complete a piece of work with a teacher in the room and everyone was doing the same thing versus me sitting at home with a million distractions, feeling like I could do this now or in an hour or in two hours or tomorrow half an hour before I go to school or on the bus or two minutes before.

Alis Rocca (18:27)

So can you tell me about your friendships in the beginning and how you began to navigate them?

Andy (18:35)

Yeah, so generally speaking, they were, you know, really toxic friendships that I got into. I think the major reason was because I learned quite early on the consequence of not being in a friendship. That would usually mean that any time you’re in a lesson and the teacher was like, OK, partner up or get into a group of three, you would be the only one left out. Or in the dining hall you’d be looking for a table to sit at and there’d be no one waving you over and it’d be very, very obvious that you were sitting alone or even like, you know, sort of out of school activities that you wouldn’t be winding up with anyone. So early on when I was getting into these friendships and in particular with this one girl, it was quite an on and off friendship. I knew that during the off periods, this was what was waiting for me. And it meant that during these times that we were friends, I was in a much more desperate state than is in any way healthy. And it’s where my anxiety first grew from because I was desperate to keep, to stay in her favour so that she would keep me around as a friend and I wouldn’t be cast aside and be alone in this school environment.

Alis Rocca (19:59)

And what did that anxiety start to feel like or show up like for you?

Andy (20:04)

It was like a clawing sensation inside my chest, inside my tummy. It caused me tummy aches. Sometimes it would cause anxiety attacks, particularly like around any conflict that we had because it wasn’t a very good friendship. You know, we weren’t super well matched. You know, we had some interests in common, but we weren’t nice to each other. So any time conflict arose, which sort of became inevitable after a while, this pattern emerged.

I would be consumed by this terror that she was gonna turn around and say okay, well fine, let’s just not be friends then. And that’d be it and I wouldn’t have anyone else.

Alis Rocca (20:52)

So what would you try and do to stop that from happening? To stop her from not being your friend.

Andy (21:02)

I would ‘people please’, honestly. I became very, very good at managing her and her emotions and figuring out how to stay as conflict free as possible. And I learned to kind of squash my own needs and thoughts and anything that kind of conflicted, I would push down and make sure that that wasn’t causing problems, basically.

Alis Rocca (21:33)

And how did you manage the anxiety? What did you do when you were having those anxiety attacks or feeling that clawing in your stomach, what were you able to do to feel better?

Andy (21:50)

Honestly, I didn’t even know to identify it as anxiety. It wasn’t, it just felt to me like kind of a consequence of the situation, but I didn’t really have a word for it. And I didn’t have a strategy for it either, other than appeasement, other than just trying to remove the what I thought was the cause of the issue, which was like my refusal to whatever, you know. So that would be the main way and her saying, okay, fine, I’m done with this now, or whatever it might be. That would be my strategy to get rid of anxiety.

Alis Rocca (22:24)

Yeah. So what year are we talking about now? What year are you in at this point? How many years have you been there?

Andy (22:41)

I’d say that was within the first sort of two years. Yeah, I mean, I got away from her at one point. Now, I have to give credit to my mother and my grandmother at this point for that, because they were with me through the highs and the lows with this friendship. They saw the tears, they saw the anxiety. And there was a certain point, I can’t remember when, I think it might have been in year eight, that there was this big blow up between us and I was agonising over how to make it right and one or both of them said to me, look, just end it, you you don’t need this. And that was terrifying for me because I was cutting myself off from what I felt was my lifeline as much as it was a toxic one. But it was really good advice and it did help me and I ended up getting into a different group of friends. Not that they were, you know, overall much better, but certainly, you know, they weren’t her and they kind of introduced to me a perspective which I hadn’t considered before, which was that I had agency and choice in that situation that I could walk away. And it wasn’t until sort of a year past that, that she then re-entered my life because she happened to join the group of friends and then it all kind of spiralled from there. But ⁓ at least for a while I did have reprieve. So that was nice.

Alis Rocca (23:58)

So tell me what you mean by it all spiralled from there. What’s the next part of your journey?

Andy (24:05)

Yes, I think there were quite a few sort of like movements from friendship groups because it definitely started with this one particular person but from that point it was sort of one group of friends and then I would kind of get edged out and then a different group of friends or a different person but I could never really find what I needed in the same way that I had in primary school and after a while, sort of around year 10, I started to feel that socially I had kind of run out almost of places to try and people to make friends with. I ended up moving schools for a short while to a different one because things felt so unworkable where I was that I felt like I needed a fresh start. So I moved to a different school and I tried fitting in there. I tried integrating. It was further away and this was in year 10. So it didn’t end up working out because, you know, these people had had like three or four years at this point to make these established friendships and there was no way that I was getting in. I felt even more isolated there and everything felt really, really unfamiliar, which was quite difficult. And it was a lot more taxing to have these much longer journeys, these more complicated journeys at the beginning and the end of every day. So I ended up moving back to my previous school at the end of, I think, that term and just kind of thought I’m just going to deal with it for the last year and a half or two years that I’ve got left.

Alis Rocca (26:04)

Well, what about the academic side through all of this struggle with the social? It seems like there was this imbalance by this point, just listening to you talk. Did you feel that this was all affecting you academically as well, or were you still doing okay? Because in primary, you were saying that you were at the top of the class.

Andy (26:25)

I’d say that I was probably either just above average or kind of average for the first few years. I don’t know that it was the social difficulties that were causing me challenges in the academic area so much as it was the learning style and environment and how that interacts with. Yeah.

Alis Rocca (26:49)

Tell me about that. How did that impact you?

Andy (26:52)

So I found it really hard as I mentioned earlier to kind of independently study, which there is a much more of a movement towards in the later years of secondary school with GCSE revision and such. That was pretty much impossible for me. It’s so unstructured and it’s done independently that I, large swathes of time that I was supposed to be dedicated to studying, I would be staring at text in a textbook without absorbing any of it, just stressed out of my mind and unable to understand why I just couldn’t do this. Or I’d take like incredibly like beautiful detailed notes in one class and then I’d get home and I’d and they’d be useless to me because they were just pretty and I was just focusing on you know something distracting me.

It all kind of wasn’t compatible with the way I learned, which is very much doing something hands-on, talking to someone, learning something and teaching someone else. All these different styles I’ve found since have worked much better for me. But this way you kind of told something, expected to take notes and then revise it later. What wasn’t for me at all. And so what that meant was I wasn’t doing well. I was either doing below average or like quite badly, depending on the subject.

Alis Rocca (28:21)

And I’ve heard you talk about autistic burnout. Do you think that’s what was happening at this point?

Andy (28:27)

So I think during year 11 quite a few things were happening in my life in different areas. Sort of beginning in the autumn and then happening until like all the way through to sort of the summer there were issues with friendship groups. I was talking to a cousin of a friend of mine in a new friendship group that I joined so it felt really high stakes to me and there was a suggestion of some kind of romantic interest. wasn’t that we were officially dating, but it may well have kind of gone that way. But he was someone who was in a really bad position mentally and wasn’t wanting to ask for or accept help from anyone except me. So I felt very much obligated and pressured to offer really high level mental health support to someone who was very vulnerable and at the cost of like this new friendship group, there were issues sort of familiarly, like in my home, things were ramping up massively in the academic space with GCSEs looming around the corner. And it did create this sort of perfect storm of every single area of my life felt like it was yelling at me. And it’s there that I kind of identify where potentially my depression began, but there is a question of was that depression or was it autistic burnout? And it’s hard for me to know which because by nature that time is quite blurry to me. I don’t have the clearest memories. So it’s hard to pinpoint, you know, differentiators there.

Alis Rocca (30:15)

Why do you think you don’t have clear memories? Where’s the blur come from, do you think?

Andy (30:21)

I think my brain was just massively overwhelmed. There’s far too much going on and at a certain point it just kind of checks out and goes, I’ve had enough, but it was around then that I started self harm, which was like the major way that I was dealing with all of those conflicting and

Alis Rocca (30:33)

Yeah. Almost like a protective approach. A protective approach, yeah.

Andy (30:50)

Complicated situations.

Alis Rocca (30:52)

Why self-harming? Where did that idea come from?

Andy (30:55)

So it started just as scratching, like scratching my arm. And that was just a way to kind of pull myself back to reality because I kind of felt myself disconnecting in a way that was really concerning to me. So something that immediately brought me back through, you know, intense sensation was just scratching my arms with my nails. But it did evolve into cutting myself and it became quite ritualistic.

Though I don’t think it was, it was something that I knew about a bit from school because there was someone in my year group who was known to have self harmed and you could see her scars if she wore something short sleeve type thing. So it was something I was aware of, but not to the extent that I ended up being kind of involved or engaged in the online space around it.

Alis Rocca (31:52)

Right. So it was sort of making sense to you at the time because it relieved the perfect storm, as you said, it relieved something.

Andy (32:02)

Yeah, yeah, yeah, I think there were sort of different motivations at different points because ⁓ the period of time that I was doing that I think probably spanned over maybe two years or so. So initially it was this, you know, horrible mess of all facts.

But then as time went on, it became a kind of coping strategy to manage anxiety down to a reasonable level so that I could kind of do my life.

Alis Rocca (32:40)

And what about eating? What did that look like at that time? Because I’ve heard you mentioned disordered eating. Can you tell us a bit about that?

Andy (32:49)

Yeah, so the disordered eating again was kind of ⁓ influenced by ⁓ different parts of what I was going through at different times. you know, as someone who was existing in the world as a young teenage girl, of course, I was subject to what diet culture tells women and girls about their bodies, that it says that, you know, thinner is better. You won’t be good unless you don’t look like this. So I did sort of look into what dieting would be like and kind of get pulled into things a bit from that regard. But I think the disordered eating habits that carried on were more coming from a place of trying to control something in a life that felt uncontrollable. And I think that plays more into…

Alis Rocca (33:39)

Mm. Right, I see.

Andy (33:48)

…something that was more like autism-led because ⁓ I felt so out of control in my life. And if I could choose not to eat, then I could choose what was happening to my body and what sensations I was experiencing, whatever, ⁓ scenarios where I felt like I had to do various things.

Alis Rocca (34:11)

So it goes back to that sense of agency. You are seeking that feeling of, I’m in control here and I’ve got a choice. What might parents or educators notice about the signs that you might have been showing? So I’m just thinking your story is so helpful to people who might be, you know, working with students or primary children or parents. What can you imagine people might have noticed from the outside looking in?

Andy (34:13)

Yeah. There are some, some things, for example, you know, long sleeves, if someone is, cutting their arms, or wearing trousers where they may previously have worn shorts, if it’s on their legs, you know, being, you know, eating less, saying, making excuses, I a friend’s house, I ate while I was outside. I, you know, I, I once didn’t eat for a few days and kept coming up with excuses as to why.

I wasn’t that kind of thing. But I think really the biggest way that particularly educators are going to be able to pick up on these things isn’t something that they necessarily can do at this point, because it would require more funding and investment from the government in schools. If there were less students in a class, if there was more opportunity for teachers to chat with their students one on one, it would be easier for them to pick up on subtler changes because, you know, there are going to be people who are self harming in ways that you’re not going to notice because it’s not happening on, you know, limbs that are easily covered or people that you’re not seeing the eating times of, you know, and you’re not going to be able to pick up on these things unless you’re having conversations with them about their hobbies and noticing maybe a lack of interest and withdrawal from things or knowing what that who their peer groups are and then seeing there being a difference in who they’re hanging out with. If if teachers don’t have the time to if they aren’t given the time to actually spend with their students and learn these little different things, then they’re not going to able to pick up these much subtler things that are going to be way more subtle than someone who’s, you know, throwing a chair around the classroom, but might be just as critical.

Alis Rocca (36:37)

Yeah, absolutely. That’s such a good point. I know you have talked in the past about school counsellors and again that comes down to funding, doesn’t it? You were lucky enough to have a school counsellor that you saw. What was good about that? How did that help?

Andy (36:53)

It gave me a space to kind of let out a bit of the pressure that I was feeling every week. I saw her from when I was 14 till I think I was about 18. She was able to carry on seeing me even after I left the school, which was amazing. She really wanted to maintain that connection because she knew how much she was helping me. And she ended up actually suggesting that I get assessed for ASD, funny enough, because we’d spent so much time together. She’d learnt so much about me that it meant that she could pick up on things that no other educator that had ever interacted with me had thought. It was massively helpful to have a space that was just for me to talk about what was affecting me because in so many areas of my life I felt that I was being relied on and that I needed to be that for someone else and I needed to be that support.

And in those sessions, it felt like I had that opportunity.

Alis Rocca (37:55)

So that is something that you would recommend to anyone that might be going through a difficult time in school.

Andy (38:00)

Massively, massively. I mean, it’s so essential ⁓ for every teenager, I think, to have a space. mean, it feels like the bare minimum to me. I always wanted to have more sessions, but I knew that it wasn’t possible because there were so many people who needed her. That, you know, I was still so grateful to have that weekly session. And I think we are like the circumstances in which children enter like teenhood are the perfect breeding ground for mental health issues. They couldn’t be more perfect. You’ve got social media, you’ve got toxic friendship groups. There’s so much that’s happening in the world that will concern them that even if you’ve not got a teenager who could be clinically diagnosed with depression and anxiety, they’ve still got things that they’re worrying about that they need to be addressed in some way. And it could just be

that chat for half an hour, 50 minutes a week that gives them that breathing room so that it doesn’t then spiral and end up becoming, you know, an actual ⁓ serious clinical issue in the future.

Alis Rocca (39:13)

So, I mean, that’s really good advice. And I’m just thinking, could we go back to your primary years? What advice would you give to any teachers or educators then so that they might have prepared you a little bit more thoroughly, not just from the academic? So you talked about that transition time had been, you know, this is what’s going to happen. The workload is going to ramp up. But there wasn’t that preparation for all the other system changes, friendship changes. What advice would you give even reaching further back to primary?

Andy (39:49)

I think it would be good for primary school educators and staff to talk to, you know, secondary school students and also secondary school staff about the social issues that they face, because I know that I’m not alone. think particularly teenage girlhood is very difficult to navigate socially. There’s a particular mentality. It’s kind of a me against the world or it’s, there’s a kind of individualism, I need to save myself before I can save anyone else. And if I take you down while I do it, then that’s a fine kind of thing, which does lead to a lot of toxic friendships and, and really difficult situations. So I think if they talk to the people who are going through the situations, or the people who are seeing those situations to understand what it looks like, they can then try and walk it back and figure out a way to communicate with primary school or even if there’s something that can be done about instilling stronger values of community and camaraderie and trying to nip it in the bud ironically at primary school level and start talking to people in year two about like friendships. I don’t know, maybe it’s not inevitable, maybe there’s something that can be done earlier.

And in terms of my situation, I don’t know that they would have known to given me any advice because they wouldn’t have known that I was autistic based on current kind of like warning signs ⁓ that I think they look out for.

Alis Rocca (41:31)

So why was that missed? Why didn’t they identify some neurodivergence within you?

Andy (41:38)

I think because I present myself very differently, as I mentioned earlier, to the stereotypical model that people think of when they think of autism, particularly in children. The signs of autism that I displayed were like knowing all my lines to the character I was playing in the school play, even though there were loads of lines and I was very, very young.

Alis Rocca (41:49)

Mm-hmm.

Andy (42:03)

Liking being in control and in charge of things. They were ways that I was expressing that was happy and really interested and engaged in the world. Usually the warning signs are about what a very specific kind of autistic child looks like when they’re in distress, you know, being destructive, not wanting to connect with people.

And I was exhibiting signs of distress. So I think there needs to be a much greater focus on recognising the positive indicators as well as the warning signs so that you can identify people who are actually happy and

Alis Rocca (42:48)

Okay. Are there any other ways that primary educators could pick up on neurodivergence?

Andy (42:54)

Yeah, I think for me, obviously, it was quite difficult because they were sort of naturally accommodating me. ⁓ think the mentality or the ideology of the school was quite flexible and tailored, which meant that I ended up being accommodated for things that, you know, weren’t even specifically or formally requested. ⁓ So kind of remembering that an autistic person or an autistic child who has been accommodated for will behave in a very different way to one who hasn’t been accommodated for. But also, like for me, I remember when I was in my late years of primary school, I think year five or six, that I was of such a sort of high reading level for my age that they actually had a sort of peer reading support programme that they put in place and it meant that I was able to support other students with their reading. And that’s also an indicator that I might have been autistic because I think it’s called hyperlexia, it ⁓ can be common amongst autistic individuals. So there’s all these different little ways that they could have picked up on it, but because they were looking for distress, it got completely missed.

Alis Rocca (44:20)

That’s such a brilliant point. So because they were a good primary school and they’d already put all these things in and you had adapted as a result and were doing so well, it meant that you were even less likely to be identified as having neurodivergence. And that’s slightly different to masking, isn’t it? Because it’s not that you were struggling and hiding that you were struggling. You were actually being, they were noticing things, putting things into place. You were blossoming.

Andy (44:30)

Yeah.

Alis Rocca (44:49)

So it made them even less likely to identify any autism or any other neurodivergence. Brilliant, thank you. That’s a really good point and something to really think about in primary. Okay, I feel like we’re coming to a natural end of your journey and it’s been absolutely fantastic to listen to it all because I think it’s so engaging and so interesting and helpful to teenagers and primary and adults alike.

Andy (44:56)

Absolutely. Yeah.

Alis Rocca (45:16)

Is there anything I might have missed? Anything I haven’t asked you that you think is important for our audience to hear?

Andy (45:21)

Yeah, so I think there were, in terms of the self harm mentality or motivations, there’s quite a significant, or at least there was when I was a teenager, there’s quite a significant, very toxic part of the internet which drew people who were unwell and engaging in those sorts of behaviours together to kind of ⁓ discuss and enable and ⁓ collect all of that darkness. And that was ⁓ quite like darkly intoxicating for me to see sort of other people experiencing what I was experiencing and feeling the sense of connection through something really, really damaging.

And I think it’s important for parents and teachers to remember that these kind of spaces can exist and are really powerful in terms of how they get into the minds. There was this whole kind of aesthetic attached to the ideas around disordered eating and self harm and it can be a really, really strong pull for an isolated teenager who feels like no one in their real life understands them to enter into these spaces and be told, we get it. And here are other ways that you can damage yourself. That’s really, really dangerous. And I think something that people need to be aware of when they are looking after teenagers. think on a more positive note,

I’ve been thinking a lot like since my diagnoses, particularly since like my autism one, but also more recently my ADHD one about the balance between recognizing ⁓ both strengths and challenges because I’m someone who like would be classed as like someone who’s got very low support needs because, you know, I’m autistic and I can live independently and work and you know conduct myself in my daily life sort of without issue for the most part and There are certainly some really significant and amazing like strengths there to recognize and there’s also a balance to be had of recognising the challenges that I face that other people wouldn’t because they aren’t autistic or don’t have a PhD. And I think in terms of education, it’s really important to have that balance because if you focus too much on the challenges and say a child is diagnosed at the age of eight or whatever and they’re told you are limited, you can’t do this, you can’t do that because of it or this medication, you need this because it’s going to fix you, whatever it might be, you risk kind of limiting that child and making them feel very much like they can’t reach their full potential. But at the same time, if you have a child who goes undiagnosed and you sort of celebrate all the things that they’re doing well without realising what they’re struggling with, you can risk that child feeling very much like they are at fault for all the things that they struggle with and there’s no reason for it, which is what I did. I internalized a lot of the things that I struggled with. So I think it’s very much about finding that balance between saying, yes, you may have some challenges and struggles with these things. And here are some tools that we can use to help you with that. And also, these are some specific and unique strengths that you have because your brain works like this. ⁓ And isn’t that fantastic? And let’s find ways that we can lean into that even further and, you know, maximize that potential.

Alis Rocca (49:41)

I think that’s such a fantastic key takeaway to your story is that balance and the importance of educators and adults around the child identifying the balance and sharing it all the way through. What would you, if that had happened, what would you imagine your story would be shifted from? How do you think it would have been improved?

Andy (49:56)

Yeah. I’m not in terms of if I had been diagnosed earlier but had both the kind of struggles and the strengths acknowledged and recognised, I hope that I would have found school easier and even if it had still been challenging, I hope that I wouldn’t have blamed myself so entirely for it because that’s really where it went for me. I didn’t understand why I was finding these things harder than my peers. You know, I used to make up all these rules in my head for school over and over and I thought that it was normal but I also kind of didn’t understand why it took so much work to just come across like I was functioning. So yeah I think it would be nice to have a reason in terms of like the self harm aspects, sorry to loop back around to that. There was a lot of stigma when I was a teenager around self harm and around it being very attention seeking and that being a very negative thing. And so what that meant to me was that I was determined to either not not tell anyone ⁓ or I’ll keep it secret like so that I wouldn’t be accused of that. ⁓ And I think actually destigmatizing attention seeking would have been really helpful because I think attention seeking is a way for someone to signal to others that they are struggling and they need help. And I think it needs to be like re-represented as that and that probably would have helped me because it was, I think, in a large part due to that because I didn’t feel that I was getting the support that I needed from the different people that it might have been and I was so adamant to not allow it to be that, that I think I went kind of under the radar for longer than I maybe needed to. So I think we need to destigmatise attention-seeking behaviours basically.

Alis Rocca (52:11)

Yeah, absolutely. And one of the things that I used to have in my school when I was ahead was just reminding all the adults that if you’re seeing a behaviour in a child, it’s there for a reason. So all behaviour is communication. They’re communicating something and it’s our place as adults to try and unpick what they’re communicating rather than just saying, they’re just seeking attention. I’m going to look the other way because what they want is my attention, but actually think what is it they’re asking for in their behaviour. Andy, this has been brilliant. Thank you so much. One last question. We are compiling a list of great reads for our website and I ask all of our guests if they have any book that they would offer as something that’s interesting or full of information, something that might have changed them around mental health. Have you got a book for us?

Andy (53:08)

Yeah, absolutely. I would say 100 % Unlasting Autism by Dr. Devon Price. It’s what I read while I was waiting for my autism assessment and it made a massive difference to me going into that because it really unpicks all the things that we think we know about autism, all those stereotypes and talks about all the different autistic people who that does not represent. And it blew my mind wide open because I was reading about people that I had thought couldn’t be autistic. And it combines both this kind of informal sort of community led tellings with a lot of studies and actual data but in a way that is still really, really readable and it makes for the most effective book that I’ve ever read in terms of dismantling these preconceived notions and just the things that we’ve been told to believe for decades.

Alis Rocca (54:21)

That sounds like such an important read. I’m definitely going to get it and I think it’s an important read for educators and parents. Andy, thank you so much for being so brave in coming on and sharing your story with us and I wish you luck with your next steps through life. Thank you.

Andy (54:28)

Yeah, 100%. Thank you.