This Voice is Mine: the Unquiet Podcast

Different, Not Less: Communication, Selective Mutism, and Finding Your Voice with Eve Harrison

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What does it take to build a movement of over a million people when you started secondary school unable to speak a single word?

In this episode, Dr Emma Offord speaks with Eve Harrison, founder of Let's Make A Difference, a grassroots campaign raising awareness about communication challenges and the power of small acts of understanding. Eve is autistic, learned BSL during the pandemic when speech was not available to her, and has since used that journey to educate, include, and advocate for others.

This conversation moves through selective mutism, the invisibility of quietly struggling neurodivergent young people, diagnosis, the SEND white paper, and the raw truth about what schools do not yet understand. Eve is 18 years old and already changing the conversation.

Different, not less. That is the message. And it has always been true.

Connect with Eve on Instagram: @lets.make.a_difference1

This Voice Is Mine: The Unquiet Podcast is hosted by Dr Emma Offord, clinical psychologist and founder of Divergent Lives. For every neurodivergent mind that was masked, misread, or missed.

SPEAKER_02

Hi, this is Dr. Emma Offett, host of This Voice is Mind, the Unquiet Podcast. For every neurodivergent mind that was a masked, misread, or messed, where identity is reclaimed and the system gets named. This Voice is mine is a podcast for those who were told they were too much, too sensitive, too chaotic, too intense or not enough. I sit by myself, Dr. Emma Offett, a clinical psychologist, a neurodivergent woman, and an unapologetic system disruptor. This podcast explores what happens when differences pathologised and what becomes possible when we drop the shame, the script, and the medical model. Through stories, reflections, and conversations with people who were never meant to fit. This voice of mind reclaims the truth of neurodivergent minds, bodies, and ways of being. This is not about fixing or fitting in. It's about remembering who we are and unlearning everything that got wrong. Today's guest is someone who has quietly built one of the most powerful grassroots movements in the communication and disability awareness space. Eve Harrison is the founder of Let's Make a Difference, a social media campaign dedicated to raising awareness about communication challenges and encouraging empathy for those whose voices are often misunderstood or overlooked. Eve's advocacy is deeply personal. She is autistic and experienced significant communication difficulties growing up, including becoming completely mute when she started secondary school. During the pandemic, she began learning British Sign Language, which transformed the way she was able to communicate and connect with others. What began as a personal journey has grown into a global movement, reaching more than a million people through daily signs, resources, and reminders that small acts of understanding can change lives. Today we're talking about communication, education, masking, and the often overlooked group of neurodivergent young people who appear to be coping on the outside while struggling internally. Eve, welcome to the podcast. Thank you for having me. Oh, thank you so much for coming. And um, just for the listeners, poor Eve had quite a journey trying to get in today, didn't you? It's just my look. Yeah. Always. Four trains were cancelled, is that right? Yes. Yeah, so we're so grateful that you you managed to get here and uh on time. So, Eve, for our listeners who perhaps maybe they don't know your account, don't know the the work that you've been doing. Can you introduce yourself a little bit and tell us about this wonderful work that you do?

SPEAKER_00

So, my name's Eve, I'm 18 years old and I run the social media campaign Let's Make a Difference. We cover all your favourite social media platforms so you can find me anywhere, except for Blue Sky, because I haven't worked that out yet. It's taking time. Um, and uh I share a single sign of the day every single day, along with another series where I do Tell It Tuesday, where I talk about my experience of the education system, amongst other things, when I find the time. You are certainly a very busy individual.

SPEAKER_02

I don't always feel like it. Do you know? There's not enough sometimes. I mean, posting daily, that's that you know, that in itself is quite an achievement to to be online and to show up every day, and it's it seems to me like it is every single day, is that right?

SPEAKER_00

Usually, other than Sunday. So um sometimes Sunday by the by just disappears when things get busy. Um, but last year I held a complete 365 days. Didn't miss a single day, it's all pre-recorded.

SPEAKER_02

Well, it it's there, isn't it? And you show up for your community, and um tell tell me a little bit more about Let's Make a Difference and when it began for you.

SPEAKER_00

So Let's Make a Difference is now four nearly four and a half years old now. Um so originally it was called something else, and that was with a group of friends, however, that didn't end well. So we then diverted into Let's Make a Difference Um and that became huge literally overnight. I posted it, I made a Facebook page by accident, don't even know how I did it. Yeah, um, and I shared a sign of the day with EasyJet whilst I was on holiday and I gained 175,000 followers overnight.

SPEAKER_02

Wow, so did you wake up to that?

SPEAKER_00

That no I I woke up and it was like sat at a couple hundred where it had been sat for ages, and then it got to like midday and it was like 100,000. I was like, sorry what? And it just kept growing literally, you'd watch it grow 30,000 followers every hour. Gosh. Me and my mum were like, What's happening? Do we buy candles for this cake or do we do we wait? We in the end we just bought sparklers, it was simpler, yeah. Um, so yeah, it blew up overnight.

SPEAKER_02

And accounts don't blow up like that without people relating to the content. So you must have been speaking to a huge amount of people.

SPEAKER_00

I think the benefit was um Rosalie and Ellis was on strictly come dancing at the time, so there was a massive surge in searches for British Sign Language. Yeah, there was something like ended up being nearly 200% increase in searches, which is huge. Um, so I think I really benefited from that surge um in searches, which was nice.

SPEAKER_02

Yeah, well, your account continues to grow, and she's no longer on strictly come dancing, so it's it's clearly about also about you know what you do and how you do it. And um tell tell us a little bit about signing and how how did you come to sign? Like, what's the story behind?

SPEAKER_00

Um, so I was referred to a pediatrician when I was in primary school for an autism diagnosis. I was very swiftly discharged because apparently I showed empathy because I repeated something my mum had said to my mum's uh my friend's mum. And um, I was then re-referred to CAMS when I started high school. Um, my high school were really great at the start, they treated me as if I was autistic from day one without any diagnosis, which was really great. Um, and then we went into the COVID pandemic and I didn't speak from the beginning of high school. So from the September, we went into the pandemic in the March, and I didn't speak at all. We were getting to a point where I was missing from registers, they didn't know where I was because I just couldn't speak. So if there was a fire drill, yeah, I was lost because I couldn't tell you that I was here. Yeah, so you had to actually use your eyes, and yeah, that in the state of an emergency, I'm quite short. You just don't see amongst hundreds of other kids. Yeah, you haven't got the time to be looking around. You just need to know that child's there. So it was suggested by my mum whilst she was battling with CAMS to try and get my assessment pushed through quicker um to learn sign language. So I was taught sign language from the March to the November of 2020, past my level one, um, and then taught my friend. So when we went back to school, I could communicate with a friend in a classroom. So those things that kids take for granted, so asking to take your blazer off to go to the toilet, saying you feel sick, saying you needed to ring your mum, I couldn't do any of those things, and it gave me that opportunity to be able to do those things. So that then built and built and built, and obviously I started at the top, so um my first conversation was with the head teacher because he also signed randomly, which was so strange. Yeah, just to be signing in a lesson to my friend and him to just join in the conversation, yeah, was so strange. Um and so I started at the top and kind of worked my way down. I left in 2024, um, and I left still not speaking to every single member of staff, so there were still members of staff that I'd never spoken to, yeah, um, and would never hear my voice because that's but I left speaking to more people than I started, which was great.

SPEAKER_02

Yeah, that is an incredible story, and I I want to hear so much more about that, and I know the listeners will as well, but it it would be so helpful to hear a little bit more about your identification journey, um, and also to hear about uh when did when did you you how do I f do I say stop speaking? When did your voice leave you?

SPEAKER_00

Like how do you describe um since I was very very little I spoke at 10 months old, which was quite early apparently. Yeah. I don't have children, I don't know, it's early apparently it's quite early. Um and I spoke full sentences like by one. So um I always have struggled. So if somebody came over that I hadn't seen like in the last 24 hours, um there was only my auntie, my mum and my dad, and a couple of others that would come in and I just talked to immediately. So this was from a very young Yeah, yeah, yeah. So literally from like one year old. Yeah, um, I if somebody came to my house, my mum would have to say, Don't talk to Eve, let Eve talk to you. Okay, because otherwise I didn't want to be your friend. But if you didn't talk to me, I wanted to be your best friend. Like I would talk your socks off for hours. You had to wait for me to speak first, so because otherwise I'd just hide and I'd like hide behind my mum or like just disappear. Bearing in mind, I didn't walk either. I bumshuffled until I was like nearly two. Okay, but you're just me hiding.

SPEAKER_02

You're this there's a young person who can speak from ten, bumshuffling, yeah, yeah.

SPEAKER_00

Um, and would hide if you spoke to me first. And then I went to primary school, I still spoke then, but I wouldn't like volunteer myself per se. Uh and then I moved primary schools, and then I would like volunteer some answers, but the class sizes were a lot smaller, it was a smaller school, it was a junior school rather than like a full primary school, so it was a lot smaller. Um, and then I went to high school, and the environmental change must have just been it, and I just didn't speak a single word. Like from the minute I walked in, it was gone completely. There was a friend that I'd talked to, but you were really lucky if you caught me talking. Yeah. Um, but it was like I was really, really quiet, and everybody just thought I was shy.

SPEAKER_02

Gosh, so there's this this this history of not being able to speak when it's somebody you haven't spoken to recently or if somebody new, and then it it becomes a completely different experience when you actually go to secondary school. So clearly there's something about that environment, something about the demands of that environment, maybe on a sensory level, that could be all kinds of things that contributed to a shutting down of your voice. Yeah. What I mean, what was that like for you to lose your voice in in that environment?

SPEAKER_00

It's just so lonely to just like so I still suffer with it, now I'm still at Sick Form. Now I go to Sick Form and talk to nobody most days. Okay. Because I just can't. Yeah. Like the demand of it is just like I'm thinking about whether I'm blinking enough, whether I'm blinking not enough, whether I'm breathing in the right places, whether I'm laughing. Like all those things that come so naturally for others don't come so naturally for me. Um, so I just go and speak to no one, it's just so lonely, and you just feel so awkward that you're just sat in the corner of the room and everybody else is like laughing around you, and you just feel very isolated. Yeah, you feel like you speak a completely different language.

SPEAKER_02

Gosh, I'm I'm trying I'm just trying to imagine what that must feel like to be surrounded by so many people. Like you say, they're interacting, you can hear their laughter, you can hear their back and forth conversations, but that isn't something available to you in that environment.

SPEAKER_00

It's like being the new kid every day and being completely aware of what's going on around you, but not being able to be part of it.

SPEAKER_02

So if we go back to secondary school and and this experience happens where you you are used to in some situations not speaking, but this is a complete loss of voice, except for this one friend that you would sometimes um we were friends in primary school, so we moved up together.

SPEAKER_00

So like I knew her, and I'd some like if you caught me at the right moment, you might have caught me speaking. So that was like away from everybody else, probably at break time or lunchtime, yeah, in a corner somewhere, or in a quiet classroom. Yeah. Um and we were really blessed because of the COVID pandemic. So we used to just sit on Zoom every day. Okay, okay. So that that came at around about the same time. Yeah, which we were really fortunate. The COVID pandemic saved me a lot from like uh bullying. High school kids are horrible.

SPEAKER_02

Yes, and when you don't speak, you look really awkward. So how long were you uh physically in secondary school before COVID and look? Literally from the September to the March. Okay, so so yeah, a term and in that time you spoke about bullying and that people weren't very nice. Did you experience that?

SPEAKER_00

Um when you fur when everybody's new, it's really hard to be horrible to all the kids because everybody's new. Yeah. So it wasn't so bad before, it was the after. Like there were kids that would like question why I didn't speak. Like they're like you knew that people knew, yeah, um, and why I was just kind of like secluding myself from everybody else. But it wasn't too bad prior to the pandemic, it was after the pandemic where things took a turn because I was not only the kid that didn't speak, I was the kid that spoke using sign language. Yes, yeah, which I mean when you put a teenager and sign language together, they think you've just thrown up gang signs, which is totally inappropriate and not right. Yeah, yeah. So that was totally strange. Um, and so they were like I was called horrible names. I wasn't ever physically bullied, but verbally was most definitely bullied.

SPEAKER_02

Gosh, that I that must have been such such a difficult time. That you know, also the one form of communication that you're using in that in school is perhaps being invalidated or laughed at or ignored or you know where's your source of being able to communicate um if people are not gonna engage in that?

SPEAKER_00

And it would make it even better when I was told to stop flapping my hands about and learn to use my words by um the Senko and the deputy head. So this is when you're signing. Yes.

SPEAKER_01

Oh my goodness.

SPEAKER_00

I was I was like just starting to build up like speech. So like I say a couple of words, like literally three-word sentences if I could speak to you. Um, and so I was told to stop flapping my hands about and learn to use my words, otherwise, I'd get nowhere in life. I was like, aren't you supposed to be the person supporting me?

SPEAKER_02

I was gonna ask, who was supporting you in school and outside of school during all this?

SPEAKER_00

Um my mum was like, my mum has always been my biggest supporter, absolutely every single time, every phone call, every email, she is there. She's like ready to take everybody down. Yay, mum. Yeah, total legend. Um, she hates emails, but she's the first one to send an email, yeah, um, or make a phone call, um, which is really great. And she's always the first one to pick up the phone. Yeah, like my train got cancelled, and I was like, Mom! She was like, It's okay, just book another one. I was like, but the other three have been cancelled. She's like, There's one more, just book it.

SPEAKER_02

Yeah, so she's she's a very calm and regulating person.

SPEAKER_00

In school, I had a mentor, but it was pretty useless, couldn't speak to her. And if I did, it was in three-word sentences. Yeah, so it was a very slow conversation that was for 15 minutes a week. So um, nobody really. I had my I had a friend, a mentor that I could barely speak to, if I could speak to, and my mum. So um the school did try their best, but when you've got COVID restrictions and things, it makes it really difficult. Yes, yeah, because trying to keep track of we're a massive open pan school, um, and trying to keep track of everybody and make sure that children with COVID aren't mixing and staff weren't mixing to try and avoid because there were still restrictions when we went back. Yeah, so yeah, that was interesting to try and provide the support that was needed, and because it was so quiet, so well behaved, it just flew into the radar.

SPEAKER_02

Yeah, I can I can imagine, and I and I know that's the case for many. Um, where then there's no disruption or what would be considered, you know, um disruptive behaviour, and so you know, people are left to get on with things. Um so I I'm trying to imagine, I'm like I'm I'm trying to imagine what it must be like to have been you at that time and how it would feel not to be able to use your words. Can you describe what that was like emotionally, physically? What was if we stepped inside your experience, what would we be?

SPEAKER_00

I mean, to me it was just normal, like this has just been my normal life now for nearly seven, eight years. Yeah. Um, so to me that's just normality now. But um it's like just getting stuck. Okay. So like I'd go to speak and nothing would come out. Like, no matter how hard you try, yeah, there is nothing there, it's not happening. Your brain and your mouth are just not working together.

SPEAKER_01

Yeah.

SPEAKER_00

Um, so if anything came out, it was a very high-pitched squeaky noise. Okay. And that was incredibly embarrassing. Yeah. And I'd just cry and recoil and completely recoil. And that was that was that. Um, and so um, and there's nothing you can do about that other than just let it ride out. Yeah, there's no support you can put in place for a child completely recoiling at that point.

SPEAKER_02

Absolutely. And you know, what I'm thinking there is that is such a you know, a developmental stage of life where you know, hormones are changing, so you you're going through, you know, quite a change in your body and your mind as well, and you know, all eyes are on each other, like at that age, everyone's judging, everyone's watching, and it's a popularity contest when you get to high school. Yeah, who is the best of the best? Yeah, so you would have had all of that to also be dealing with.

SPEAKER_00

It's no longer primary school with who can run fastest across the playground. No, yeah, yeah.

SPEAKER_02

So, yeah, it was a really interesting experience. But how incredible that you found this way to communicate through sign language. And did that empower you?

SPEAKER_00

Did that give you voice? Yeah, I'd say so. Um, I know quite a few people now that have used sign language that have unlocked their child's voice or their voice, and it's been really helpful because it's that fallback method. If it's all else fails, there's something there. Yeah, there's somebody who's going to be able to help you. Um and I was really privileged that there was people that did want to help. So there were a few teachers that did want to sit down and have the time to learn and did want to communicate with me. I mean, not every teacher has got that kind of time on their plate. I don't know many people that have got time to sit down and learn a language like I did. Um, and I had friends that were eager to learn and did want to learn because they thought it was cool that they could communicate across the classroom without opening their mouth and getting language and no one else. It's like Morse code. You don't even need to look at each other to do it, you just need to look at the hands so you can just look across the classroom. That's very cool. Yeah, it was really cool. So you could be like, This lesson sucks. Nobody had to know, and you could be like, There's a weird smell in.

SPEAKER_02

Can you hear the electricity? Oh, that that's brilliant. That makes me feel like you've got you've got moments to kind of outsmart the situation. Yeah, you know, yeah, this stuff is this is you know distressing, but I can't. Awesome.

SPEAKER_00

If you got a pre-warning for the fire alarm, if they knew it was coming and they'd warn you sometimes so that they'd like reduce dysregular uh reduce dysregulation, yeah. Um you could then be like, just you know, it's a fire alarm coming in 30 minutes, it's just a drill. Pack your stuff up.

SPEAKER_02

We're not coming back. Oh, that's brilliant, that's brilliant. Yeah, so you had some people who were able to join in with this form of communication, and I mean, what was that like for you? Was that reassuring? Was that did that feel safe to have people joining you?

SPEAKER_00

It just felt like you were included in a world where you felt so excluded, you felt so alien, and you just felt like it it was like feeling like you belonged to something, yeah, which I don't get very often. Like I just constantly feel like an outsider. Um, so it was like really great to have teachers that did want me to belong and friends that did want me to belong when I'd spent my whole life batting between friendships and I was only 11 to 12 years old.

SPEAKER_02

And I wonder if people like really understand what that would have been like to feel that isolated and and like on the periphery of these other conversations that people were having that that that wasn't part of your experience at that time.

SPEAKER_00

Yeah, I was really grateful that when I wasn't at school, I was able to communicate so with my friends and family. Although it might have taken me half an hour um and they might not have spoken to me first, I was able to communicate if I wanted to, um, and I really tried to. And so it wasn't completely isolated. I couldn't imagine what it's like to be completely, completely mute all the time. Yeah, that must be so frustrating, yeah, because it was frustrating enough to have a headache and not be able to say, I have a headache at school alone. Like, can you please tell? Turn the lights off, I have a headache. It was just not words in my vocabulary that I could express. I can't imagine how frustrating that must be for that to occur all day, every day.

SPEAKER_02

Well, you can't advocate for yourself. That's what I'm hearing. That you can't tell people this is how I'm feeling, this is what I need.

SPEAKER_00

Yeah.

SPEAKER_02

Unless they can join in with sign language or another form. But it's not it's not the same ease, is it, as simply saying, I've got a headache.

SPEAKER_00

And I mean, sometimes with selective mutism, you just end up so frozen that you can't do anything. Really? You're just stuck. Like. So say writing it down or you're just stuck. Yeah. Like it gets to a point where if you've tried and tried and tried and tried and tried. So if I'd been trying for three hours to try and get something out, that was it.

SPEAKER_03

Yeah.

SPEAKER_00

There was just nothing. I couldn't write anything, couldn't say anything, couldn't sign anything. So I was just stuck. So even with the signing, that wasn't a foolproof solution. It made things better, made things easier because I could try and communicate that before it got to that point. Yeah. So I only had to try for an hour, then I could try something else. Okay. Then I could try something else. Yeah. Before I got stuck. Yeah. So if my friend wasn't in the room, that's when things got stuck. When there wasn't a member of staff that could understand, there wasn't a friend that could understand. That's where things got tricky.

SPEAKER_02

And how do you understand that? Like how how do you understand what was possibly going on for you that without those safe people, I'm presuming they would like your safe people, that that's part of when you would get stuck?

SPEAKER_00

I have no idea. I just did. I guess when you live with something every day, you kind of work it out. Like I guess if you develop something later on in life, you develop arthritis or something, you work out what your limits are. Yes. And you kind of work out very quickly what's too much, what's not enough, where things lie. Yeah. So I guess that's just kind of where I got it from.

SPEAKER_02

You just learn to live with it. I was going to say learning to live with it and how to manage and still achieve what you want to achieve and get your needs met. So you have to adapt, don't you? And that's what you did. You really adapted to the situation. So it didn't stop you going to school.

SPEAKER_00

You still I didn't want to. My mum had to take me to school every single day. Um and as we got towards the end of my high school experience, I was actually taken in every single day because otherwise I wouldn't go in. And there was a half an hour meeting every single morning because you just couldn't get me through reception because I didn't want to, I didn't want to go so badly.

SPEAKER_02

Right.

SPEAKER_00

So um yeah, it worked for a bit until it didn't.

unknown

Yeah.

SPEAKER_02

But this is not an uncommon experience. No. Young people really finding school a very difficult place to be. And and this is a very common experience for neurodivergent young people is that school is all kinds of things. It's overwhelming, it's scary, it doesn't feel safe, it doesn't support your neurobiology, doesn't it help you to learn in so many ways? It's actually quite a negative experience. Is that what it was like for you?

SPEAKER_00

It still is. Yeah. It was literally February half-term two, three weeks ago. Um, and by the end of February half term, my school received an email from me to say, I don't feel safe, I'm not coming back. And they said, You are coming back, and I said, No, I'm not. Make me. Yeah. Um, fortunately, they really pulled things together really quickly and they've put some support in place, yeah, or tried to. Um, so I made it in for a couple of hours last week. Okay. Um, but yeah, I feel that now still to this day, that it just doesn't work.

SPEAKER_02

What what did you what do you need, do you think? Do you know what it is that you need the environment to do differently or just all of it, yeah.

SPEAKER_00

Just the whole thing, like some of it is so out, like some of the stuff we learn is outdated, um, and that needs to change. Um, and I think the teachers so desperately want to help, but my LSA did a textbook training on autism. She was like, it's nothing like half of you. That's it. Yeah, it's a lot of different things. Yeah, it's so like the training is not there, the real life experiences are not there, the cat the some of the teachings are outdated. Not everybody's understanding is the same because you get teachers from like different generations, so their understanding of what neurological disabilities are are like completely different. Yeah, um, and so I think the training and the understanding needs to be on the same level. Agree. Um, and the classrooms need to be smaller. My year was a massively oversubscribed year nationally. Um, huge, like there were kids without schools and things because the schools were so oversubscribed in my area, um, and so it was so big, but the classes needed to be smaller. But when you've not got enough schools, you can't make those classes smaller, not got enough teachers, can't make those classes smaller. Yeah, um, and I think there needs to be more one-to-ones. There is not enough one-to-ones. These LSAs are so valuable, yeah, but there's just not enough of them.

SPEAKER_02

So that would have made a difference to you if if you'd had a smaller class, um, if you'd had more one-to-one support, if people understood autism and neurodivergence and could find out from you perhaps what your experience of neurodivergence was, because we're all different neurodivergently. We might share some traits and some experiences, but ultimately we're all different, aren't we?

SPEAKER_00

Yeah, yeah. Um, yeah. I just think this whole system needs a reboot.

SPEAKER_02

Yeah.

SPEAKER_00

I don't think any white paper is gonna change that. Um, so Bridget Phillips and I'm coming for you. Well, let's do it. Um, not in a nasty way, but um in a thing, uh in a way of you need real life experiences, you need those children that sit in the classrooms. It's important to have those parent conversations, it's important to have those professional conversations, yeah, it's important to have those industry experts. But when we're talking about children's education, the people that need to be sat in that room are the children in that setting. Yeah. Um, and I'd like to see more coverage of that. And I guess there's rules around posting photos of children on social media and their experiences. Um, but I'd like to see more of young people being recognised and that there's evidence that you've sat and heard young people.

SPEAKER_02

Absolutely. We need that lived experience, don't we? Yeah. To be leading in defining those changes. So I definitely want to get into the white paper with you and and and and talk about that. Before we do that, could you tell our listeners a little bit about your identification journey? Because you was you were saying that it at first you weren't recognised as autistic by professionals.

SPEAKER_00

No, um, so I repeated in a um meeting with this pediatrician something that my mum had said to my friend's mum, um, and they said that shows empathy and discharged me the same day. My mum was like, sorry what that was part of your assessment. Yeah, apparently so. Um, that was rather strange. My first primary school said um they just didn't realise that anything was wrong until my mum went to pull me out of the school. Um, the school themselves were just not thriving the way that they should have been. Um, and they did some preliminary assessments and they said, We're really sorry we failed your child, your child should be on next year's work. I was being put into intervention for children were failing, and I hadn't written anything for ever because I just refused to do English. So I was given a scribe, a reader, I was being put into intervention. I moved to my other school. The sec uh the second teacher that I had didn't really see it, but um, the family support worker was really great. She got the referral to the pediatrician, the pediatrician said that. Then we got referred to CAMS, yeah, and that waitingness was so long. So, in the end, um I was really fortunate um that my um great aunt and my grandfather paid for my diagnosis, okay, which was really great because it got that support. I got my diagnosis the day my initial appointment for CAMS came through, which was madness. Yes. Uh so we showed up to that appointment, we were like, Uh Eve is already diagnosed, and they went, Oh okay, bye. And that was it. What did it mean for you to receive that diagnosis? Um, I knew I was different, I didn't understand why, and it just gave me a reason as to why I was different, and then I felt better about it that I wasn't just weird or strange, yeah, um, and that I couldn't speak for a reason, that noises hurt my ears for a reason. I think for weeks and weeks, my school kept going back to my mum and saying, You've got earache again. And my mum's like, I've taken her to the GP like a million times at this point. Yeah, she hasn't got earache, her ears hurt, which bit of is you not understanding. Yeah, but they moved me in the classroom and then my ears no longer hurt.

SPEAKER_01

Uh-huh.

SPEAKER_00

So it was to do with like the acoustics of the room and where I sat. Yeah. Um, and so it gave me a reason for all those things, and then I felt normal, yeah, like I fit somewhere, that I belonged somewhere again, um, and that I wasn't just strange and weird.

SPEAKER_03

Yeah.

SPEAKER_02

I I don't I don't think some people appreciate um, and it's not a criticism on them, they just don't understand, are not educated, it's not their experience, but I don't think people appreciate the compassion that that identification process can bring because it does give some answers, yeah, it does help you look in the right direction. Okay, I need to look at sensory, or I need to look at how I process information. It it opens up, you know, a world and a perspective where you can truly advocate and help yourself in so many different ways, doesn't it?

SPEAKER_00

I mean, I also had an IQ test and I thought it was brilliant because I was had higher IQ than my dad. I was like, I'm smarter than you. It gave me it gave 13-year-old me way too much of an ego. I thought it was brilliant, it is brilliant. So I was like, yes, when yeah, yeah, smarter than all of you. So you welcomed in this diagnosis, it it was validating for you, it sounds like there was definitely a grieving process of like had I have been like one of my cousins or another child, and maybe I've been diagnosed earlier if I'd showed different symptoms, maybe if I'd thrown a chair a bit earlier, yeah, um, I would have been diagnosed earlier, and so I would have felt less alone and less alien, and I would have grown up feeling like I belonged a bit more and a bit more included. Um, but everything happens for a reason, I guess.

SPEAKER_02

Yes, that's true, that's true.

SPEAKER_00

Um but I also hear what you're saying then because I I work with a lot of late identified adults, adolescents, and um I mean I was considered early, yeah, because I was 13, 14 nearly, yeah, when I got my diagnosis, so I was incredibly early for certain people. For certain people, yeah.

SPEAKER_02

Yeah, and I would still class that as late diagnosed, but you're right, it's early compared to I not to be stereotypical, but boys tend to be diagnosed much earlier.

SPEAKER_00

Oh, they do. But I was considered like much earlier for a girl, yeah, not to bring gender stereotypes into anything.

SPEAKER_02

Well, there are the lost girls of autism, and there's a book about that, which is really really speaks to this what we often refer to as an in-betweener, somebody who you know, the the impact of their neurobiology, their autism in an environment is distressing. However, people are saying you're empathic, you're you don't fit my version of what an autistic person should look like and behave like and be like, and so then you're not autistic, yeah. You're stuck in this in-between place. Tell us a little bit about that experience for you. Um I don't even know.

SPEAKER_00

I don't even know where to start. Um, just being that in between, you just like it's just a permanent state of feeling weird. I just like went about my whole life feeling weird. I still feel weird. Because you're not in one place or the other, are you? You're like, you're not stereotypically one way, but you're also not normal. So everybody's looking at you going, you're weird. And then the other group are looking at you going, nah. Yeah. So you're like, where do I belong?

SPEAKER_02

Yeah, this is really strange. Yeah, and and I'm I'm so grateful that there is more research, more grassroots, more people like yourself speaking up that are saying autism doesn't always look this way, it can look this way.

SPEAKER_00

I was told by a careers advisor that I didn't look autistic. I was like, Autism does not have a look, it doesn't, does it? Um, and then she told me that um I was one of the good ones because I was a functioning member of society.

SPEAKER_02

Wow.

SPEAKER_00

Yeah.

SPEAKER_02

Let's just digest that.

SPEAKER_00

I hit the roof. Yeah, I was going to say, how did you respond to that? Um, in true selective mutism style, nodded in it and just moved on. Um, and then after that, um I wasn't the only person that said had varying opinions and things come from this teacher. So then reports were made, my mum made a phone call and she was like, This is not okay. But I hit the roof phone call to my mum after I was like, This is not okay. Yeah, um, because autism doesn't have a look, and everybody is a functioning member of society in their own way, because everybody brings something to society, regardless of whether they work, whether they don't work, yeah that everybody brings something to society, even the littlest people, even my little three-year-old cousin, even though she's a terror.

SPEAKER_02

I just love that that everybody brings something. Because you what you're doing is you're you know shining the spotlight back on that teacher and saying, actually, it's you who needs to examine your perspective, your views, yeah, your values, perhaps as well.

SPEAKER_00

I've not seen her since because uh I've a bit a bit more confidence since then. Yeah, yeah. Which um yeah, I think she regrets saying that now. Still waiting for my apology though.

SPEAKER_02

Yeah, well maybe she'll tune in. Maybe hi if you're listening. Okay, so you you you you learn signing, you receive your diagnosis, and you know, perhaps things start to improve a little bit for you in terms of a little, a little uh and then I made some interesting friends.

SPEAKER_00

Um that was a really unique experience um and for their own privacy, that's their stories to tell. Um, because they had um some really interesting experiences themselves. Um, but yeah, I made some really interesting friends. I went through a really tricky time at home, I had a lot of adverse school experiences, um, and things got really tricky. Um, and then those things started to clear up. My friends got the help they needed, okay, um, and I got some of the help that I needed. Things then started to clear up and then started to get a bit better temporarily. Yeah. Uh, and then it went all cusplat again. We got to year 10, year 11, and things just tumbled absolutely. I spent um, I think probably about uh half term um completely not engaging with the rest of the mainstream school. I was taken into school every day, there was a meeting every single morning, there was crying, I don't want to leave. I then suffered with stress-induced migraine so badly that I was medicated for six out of seven days of the week and spent six out of seven days of the week in a dark room because I had migraine.

SPEAKER_02

Wow, that is such a lot for any person, but for a young person as well. When you, you know, and it sounds like you wanted to get your education even though you didn't like the environment.

SPEAKER_00

I like learning. Yeah, I love to learn, yeah, but in my own space, my own time, yeah, when I think it suits me, when it's benefiting me, when it when the environment is right.

SPEAKER_02

Yeah.

SPEAKER_00

So like I'll do masses at like three o'clock in the morning because I'm like, this is a great idea and run with it. This is the moment, yeah, in the middle of the night. Yeah, I'm like, now is the time to conquer the world. Yeah. I have uttermost motivation at stupid o'clock in the middle of the night. Um, but at midday, after being at school all day, I'm like, no.

SPEAKER_02

Not now, not now, not now. And I know that we can't run schools that are 24 hour. And we should. Well, you know, we could reimagine school, that would be a fun thing to do, wouldn't it? Reimagine school. Um, when it we may get there, let's say maybe we'll get there one day. We mean AI. Yeah, it's well, that this is it, this is it. We should definitely talk about that as well. Um, but let's talk a little bit about the white paper, perhaps, because that is about trying to redesign, you know, parts of different systems to support to hopefully support neurodivergent people, but that might not be the case in reality. What are your thoughts about the white paper?

SPEAKER_00

It's really strange because I'm really pleased that they're not going to affect me because it just felt having read it, it was a lot of pages, a lot of reading. It was huge. Yeah. Um, and I I think some of it has real potential and could be really great. Um, but I think it was very vague. There were bits that weren't so vague, but it just felt very rushed in my opinion. Okay. I mean, everybody's got a different opinion of it. Some people think it's great, some people don't. Um, but it feels like I feel guilty in a way because I we've got to watch that unfold for all those people to come. Um, and although I feel ecstatic that that's not going to affect me, while my school experience was shocking and I wanted it to get better, um, there's that weird bit of guilt that somebody else has got to deal with that change and all those things that all those teething things that come with introducing new policies and interests. Um because nothing will ever be perfect straight away. You can't put anything into practice and it'd be perfect straight away. Yeah. And work for absolutely everybody, especially when you're putting something out so national and changing things. And although I think while it's phased, but does that mean it's phased across the country? Yeah. Is that an instant, like, how are we phasing? Like it just felt very vague. Um, so I agree. Yeah, and there's another part of me that's sad because I wish those reforms had come sooner, because maybe my education would be different. Maybe I wouldn't have got to a point where I was pulled out of school because I was so physically unwell that it got past the point of I couldn't go because what was the point? Because I wasn't learning anything, and I was so physically unwell that it wasn't sustainable.

SPEAKER_02

Yeah, yeah.

SPEAKER_00

Um, and so I wonder whether things have been different. So I have very mixed opinions and feelings on the white paper. Um, I'd like to see more clarity and stuff to come in more in practice, yeah. Um, and while it's not going to impact me, I will definitely be stood waiting for further details and still advocating because there are people that I know that will be affected by that system, and it's important that it's done right.

SPEAKER_02

Yeah, I completely agree with you. And I and I, you know, we we recognise, don't we? It it's it's going to be hard to redesign these very old systems, these huge systems that have got so much ingrained in them that we need to unlearn and relearn and redesign, and it won't be this overnight thing. Um and I suppose for me, it's going back to what you said. I I who informs that is uh so crucial, and it needs to be people like yourself, or maybe people like myself, those with lived experience who have had these struggles of uh receiving a diagnosis, of being seen, um and of of uh receiving education. And it it doesn't stop with education, does it? It's it's healthcare, it's you know, it's it's all the systems, it's workplaces, it's all the fits together.

SPEAKER_00

I'd like to know how much the Department of Education, how often they step into a school um and step into those worlds of those parents, of those children, how many of them have children that have additional needs and complex school experiences? Yeah, because I think you can't be a policymaker and make those decisions about something you have no idea about, yeah, because that's when you make the wrong decision, and then you end up it ends up backfiring massively, yeah, and then everybody feels like they're jumping on you, and when you make you could say one wrong thing online and that's it, um but it's like yeah, I fear for what's to come, but I also have a lot of hope for what's to come.

SPEAKER_02

Same, same. No, it's it's I I find it hopeful that that the conversations are being had, and so the spotlight is there. One of my my own worries of for the in-between is that they are the unseen a lot of the time, and will they be picked up in this redesign when we start to get into conversations about severity? And that is that's a what defines a complex need.

SPEAKER_00

Exactly. There is no definition of what defines a complex need. For some people, I'm a very complex child, for others, there's nothing complex about me. Um, it that that's all down to personal definition. Yes, what you see online and what's in reality are two very different versions of me. Yeah, one is look. Like I've got completely got it all together, and the other one's screaming in the corridor because I don't want to go to school. Exactly. And like I didn't speak. Surely that defines a complex need. I can't advocate for myself. That's very complex. Yes. And I speak another language. That's complex. But also I just get on with it.

SPEAKER_02

So not complex. Totally agree with you. And and that that's the part that worries me. And I think that, yeah, like I said, how do we raise that voice about I'm complex and I'm not complex, depending on who's looking at me and judging and deciding. And where I'm at. Yeah, and where I'm at in the time of day. Yeah, exactly. Because I would say the same about me that yeah, I have people in my life who know the complexity and others who might say, Yeah, but look what you've achieved, so therefore you're not complex. Because if you can achieve in this area, it means you probably don't struggle anywhere else.

SPEAKER_00

And also this little difference between where they put achieving and thriving. Thriving came after achieving. Yes, yes. Um and that upset quite a few people. Yeah. Because you could I don't think you can achieve without thriving first. Otherwise, you're just achieving what somebody else's standards are. Yeah. Whereas everybody knows what your own standards are and what you're capable of achieving, but you can't achieve those without thriving first and being in the right environment to do so.

SPEAKER_02

Yeah, absolutely. No, I wholeheartedly agree with you there. I I think some of the listeners will be curious about how you can be here on this podcast and be such an articulate, you know, intelligent, you know, wonderful speaker. Thank you. And um, you know, because that can perhaps to some they can't bend their heads around, but how can you do a podcast which you know is it's asks you to speak up and asks and it's an unusual situation we've never met in real life, although we've talked online. So that you know, what would you say to that, or how would you help people understand?

SPEAKER_00

A lot of internet stalking. I watched every single podcast episode nearly twice. I've looked at the entire of the room. Yeah, I've gone back to your first Instagram post. I know absolutely everything, like I've thought this out so hard. Oh wow. Um, and like everything I can either go into it knowing absolutely everything and being so like flooded with information that I know exactly what I'm preparing for, yeah, or go into it with no information and just hope for the best. So when I went on not your typical, I came knowing absolutely nothing. Yeah, I think I'd watch maybe one or two episodes because um Lisa Lloyd had been on the other one and I'd been following her for years. Um, and so um yeah, I either go in absolutely knowing everything or nothing. Yeah, um, and so if you can process it, you can then work yourself up to that and kind of work on that. And obviously, I've done a lot of work on my selective mutism to be able to talk to certain people. So I went to college and I spoke to a couple of people straight away. I didn't go and speak to no one, yeah. I mean, my poor um head of sick form was uh previewed to an entire meltdown on results stage before she'd even met me. What a welcome to her school. I was like, and you still want to accept me because now I've had a complete meltdown and now I won't talk to you. So um, yeah, the poor woman, total legend. Um, but yeah, I just basically thought everything out so well and prepared for absolutely every eventuality, including the trade.

SPEAKER_02

Including the trades. Well, you know, I find that incredible, and that's a lot of hard work at the same time. I'm thinking, I hope you enjoyed listening.

SPEAKER_00

And it wasn't all just hard work, no, not like the podcast. It's great at three o'clock in the morning when I've decided to tidy my bedroom or rearrange my furniture.

SPEAKER_02

But that's you know, that's a good point though, isn't it? You know, people might see you on a podcast and think, um, oh, everything's absolutely fine now, and have that very simplistic understanding, but actually, there's a lot of hard work to you know, you're doing 20 marathons to get literally, and whereas another person that wouldn't be the case, and then they don't have to put in that effort to do that to have the same end result. Exactly, yeah. So, Eve, I mentioned about bringing in an object today, something that's grounding or something that's a holding object. Have you brought something in?

SPEAKER_00

So I can't just pick one thing because that depends on the day who I'm with, what the time is, the location. Yeah, yeah. So one of my most useful things, which was the original version of communication, are my communication cards. Oh, well, uh, I have no concept of feeling, so the feelings are useless. Uh my favourite one says uh leave Eve alone. Okay, that's the that's the favourite card. Yeah, did you use that a lot? Yes, leave Eve alone. I've got one of those. Yeah, just that sentence. Yeah, just on a frame, just put it on the door. Uh my earplugs, because the life and soul on my headphones, yeah, either, either or do amazing. They get used a lot, do they? All the time, all day, every day. Yeah, because despite how good they are, I can still hear everyone. Yeah. Um, although I wish I didn't sometimes. Uh, and then I think somewhere in here, that's where it is. This oh the most amazing fidget toy on the planet.

SPEAKER_02

What do you like about that one? Because there's so many, and uh they all have a different appeal, I think.

SPEAKER_00

Um, I think purely just the sound and the vibrations, yeah. So it meets all the sensory needs, yeah. It doesn't have a smell, it doesn't have a smell, yeah, and I don't have to eat it, so yeah.

SPEAKER_02

It's perfect, yeah.

SPEAKER_00

But I just totally get that.

SPEAKER_02

Yeah, the vibrations that's something that I would seek out actually is a vibration and and it has to be the right sound, but certain sounds are very soothing.

SPEAKER_00

Also, after you've played with them a while, they start to make litter, like lighter sounds, yeah, so then they become quieter for the classroom, so it's like less obvious. Also, it makes like a pen click sound, yeah, so you can get away with it just being a pen in a classroom and nobody notices, yeah, because everybody just thinks you're clicking your pen in your pocket.

SPEAKER_02

Because that's the thing about you know our accommodations, our grounding objects, our our fidgets, is you know, sometimes I've I've met with teachers who said, Oh, suggested a fidget toy or something, and that person doesn't want attention drawn to them necessarily.

SPEAKER_00

So having something that you can discreetly put somewhere, and it sounds like I was suggested ear defenders, but I could not cope with the thought of wearing them and everybody else looking at me and knowing, yeah. Whereas these are so tiny, yeah, and I mean they come in pink, so they're like they're pretty as well, yeah, cute, uh and I can stick uh gems to them so they get glamorified. So I took them to prom uh and they had gems stuck all over them. They're an accessory, yeah, yeah, yeah, yeah. Fashion statement. Um they're like very similar to the loops, they have um slightly more decibels than the loops, and they can be like switched and changed, um, so which is why we went with those and not the loops, yeah. Um, and so they were really helpful, yeah, because they were discreet, yeah. They're not like I have a black pair too, so they weren't with my school uniform, um, but you can't tell that you're wearing them, they kind of blend in. Yeah, if you've got your hair down, nobody's got a clone.

SPEAKER_02

Yeah, it's so important that this that discretion to not invite more attention or more negative attention or misunderstanding, it's really important, isn't it? Definitely. So I've got two final questions for you. So if someone listening today recognizes themselves in this conversation, particularly young people who feel unseen or misunderstood in school, what would you want them to know?

SPEAKER_00

I say this to a lot of people. So when I do my Tell It Tuesdays, I get a lot of people's stories, and some of them break my heart, like they are so like soul destroying. There's a child who's five feeling the way that I felt at 11. I was like, You're five.

SPEAKER_01

I know.

SPEAKER_00

Um, and I like to remind parents and young people that they're different, not less, and that different is a beautiful thing, and without different, the world wouldn't spin. Um and that was told to me by um a YouTuber when I first got my autism diagnosis. Um and it's something I carry with me every single day. Um, that just because you're different doesn't mean that you're any less in the world. Absolutely. Just because you're not academic doesn't mean that you're any less in the world. Just because Jimmy over there is getting an A star and you're getting a C doesn't mean that you're any less. Absolutely. Everybody is worth being on the planet and being around and bring something.

SPEAKER_02

Yeah, that's beautiful. That is beautiful. And I that's gonna touch a lot of people. That really is beautiful. And then finally, when you hear the words this voice is mine, what does that mean to you?

SPEAKER_00

I spent so much time not being able to speak and not having a voice and not being able to advocate for myself, and I think being able to advocate for yourself is so powerful, and now that I have got a voice, I don't shut up. Um and I think it's so important that you use your voice, you tell your experience because there is gonna be somebody, even if it's just one person out there feeling the exact same as you. I mean, I discovered very quickly that there was over a million people feeling the exact same way as me, or had the same interests as me, or wanted to help me. Um, and so even if there's not somebody exactly like you, there's always somebody out there who wants to help. Um, and so I think there's a lot of power in being able to use your own voice.

SPEAKER_02

There certainly is. Eve, it's been such a delight to talk to you. I'm so glad that there was a train that you could get. I'm so glad that you found your voice to come here today and that you were, you know, happy to come and talk with me because I thank you for having me. Oh, I've just loved the conversation.

SPEAKER_00

I love being here. You're gonna be on Sky High tomorrow. Oh still.