Episode 21: Kaleidoscope Festival 2026: Learning to Unmask: Sami’s Story About Living Life by Her Own Terms

Welcome to the first EVER podcast pop-up special! Our podcast was invited by Nicola Haigh, Community Manager at the Storyhouse in Chester to be a part of the incredible Kaleidoscope Festival that is held annually celebrating people with learning disabilities, neurodiverse and all kinds of disabilities as part of Disability Pride Month! Sarah had the mammoth challenge of doing FOUR different interviews in ONE day, with guests with so many different stories to tell.

Joining Sarah on this podcast special episode filmed in The Den in the Children's Library at the Storyhouse for Kaleidoscope Festival, we welcome to the guest spinney chair (rather than the usual sofa) the first time onto the podcast, Sami, a member of the Token Comedy Collective and it's her first time at the Kaleidoscope Festival like us!

As Sami grew up, she always felt different but couldn't pinpoint what it was. When she was at nursery, staff thought she may have hearing issues because when in a group setting, she didn't always respond to her name so she had to have her hearing checked - no issues were found. As a teenager, she started to struggle with her mental health and after years of trying various treatments and medications nothing really seemed to be helping, which left her burnt-out by her 40s.

Sami's life changed forever after she attended some autism training, where she felt such a synergy with what was being talked about on the course that she decided to explore this further. With Sami's only real reference to autism being two members of her family that are non-verbal, this changed Sami's perspective and made her see how much of a spectrum there is when it comes to be autistic.

After getting diagnosed as autistic three years ago, it wasn't a surprise to Sami that she was then diagnosed with ADHD a year later. Sami emphasises during this episode about how incredibly exhausting masking is, the importance of being able to recharge and the irony of trying to recharge as someone with both ADHD & Autism!

With her want for people to increase their acceptance of neurodiversity, Sami talks about how important it was for her to find somewhere like the Storyhouse when she first moved to Chester: having somewhere that felt welcoming and inclusive in a supportive space with people that are understanding of her with an added bonus of finding a new hobby in comedy writing! Sami talks with such brilliant detail about how someone described to her what it feels to be autistic and have ADHD with imagery of a car speed dial; starting at a higher point on the rev scale and then very easily being over-revved into overstimulation. 

Sami talks straight from the heart with such passion about how it's ok if your life doesn't look like a social media feed filled with group holidays & nights out pictures, the care she has put into her extensive collection of vinyl records and how important she feels groups like the Autism Wellbeing Project are for building connection with other people.

Want to know about The Autism Wellbeing Project and the amazing activities that are provided for free for autistic adults? 

Come and be a part of our inclusive and welcoming community that supports over 300 people across the UK! For more information, please click for the link to our website here

Transcript

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SPEAKER_01 0:10

Okay. Hello, everybody, and welcome to the Autism Wellbeing podcast. I am your host, Sarah, and I hope I find you well. And we are at the Story House for the Kaleidoscope Festival, and we have got someone incredibly amazing that we're going to be interviewing very shortly. But first, the Autism Wellbeing Project is a project that was set up by Emma Eger and Emily Abbott. And it is a place where autistic adults can come and join activities for free. And they can range from paddleboarding to arts and crafts. So it's something that's really important to the community. And what's even more important to the community is finding new voices to share stories. So we have got a wonderful guest. So hello, guest.

SPEAKER_00 1:07

Hello.

SPEAKER_01 1:08

So if you could introduce yourself to our wonderful audience.

SPEAKER_00 1:12

Yeah, sure. My name's Sammy. I live in Chester. And this is my first time at Kaleidoscope Festival.

SPEAKER_01 1:19

Well, that's very exciting because it's mine too. So it's been a definite learning experience finding out what's happening within the community, especially with I'm based in Northwich. The Autism Wellbeing Project is based in Widness. So it's nice to be able to see what is happening in Chester for people that are neurodivergent with learning disabilities and other disabilities. Now, we do actually know each other a little bit, but I'm going to do an icebreaker. So I was wondering if you had an interesting fact about yourself to share with our audience. Now it could be something a bit quirky, it could be something that you enjoy doing.

SPEAKER_00 2:03

Well, one thing that might be interesting to people is that I am an avid collector of vinyl records. So I have a pretty hefty collection now. I've been collecting for the last few years, and yeah, pretty pretty diverse range, I'd say, music from the 1960s to present day with a heavy dose of the 80s and 90s, I'd say, in there as well. Is there any particular artist that is your favourite? I love all different genres, but I would say, you know, I'm particularly proud and really enjoy my 80s vinyl, music from the 1980s. I think there's something really special about the quality of vinyl from that era and the way music sounds on vinyl there. So that they're probably my favourites, I'd say.

SPEAKER_01 2:48

Well, I've only just started doing a vinyl collection. Probably in the last two or three years. I think I've got about eight. So the fact that you say that you've got a lot, guessing that means you don't know the exact amount that you've got, and it must have been that big a collection that you've got there.

SPEAKER_00 3:04

No, I don't. I should probably do account. I did, I did sell a few before I moved here, but yeah, it's difficult. I will say, Sarah, it can escalate quite quickly. I know when you say you've got a few, but trust me, I'm sure you'll find it accumulates quite fast. Definitely got too many sometimes, I think.

SPEAKER_01 3:20

So I'm going to share my fact about myself. So I don't really like tooting my own horn, I think that's the phrase. So last year I was nominated for a national diversity award for, I've had to write it down, positive role model for disability. The reason why I brought that fact up is because this year, the Autism Wellbeing Project, they were nominated for their first ever National Diversity Award for the Community Organization for Disability, which considering it's been going on for only about three years, which is pretty amazing. So I like the fact that I managed to get a fact out about myself and then also plug the project. We have some things in common, Sammy. So we've been talking before the podcast, and we are actually part of the same group that meets at the Story House. Could you talk a bit about that group for me?

SPEAKER_00 4:23

Yeah, sure. So Token Comedy Collective is a group that meets monthly at the Story House. It's a comedy writing group. And yes, it was somewhere that I came across when I first moved to Chester. I think it's hard, you know, moving somewhere on your own, you know, where do you start? But I think we're very lucky in Chester that we've got a space like the Story House where there is so many groups and free activities you can get involved in. And I think came across token on Instagram, I think, on a pop-up. And I've never done any comedy writing in my life before, but I think what appealed to me, I could see that it was, you know, it was very open to anybody. It came across as a very inclusive space, whatever your background. And I'm a pretty creative person in other aspects of my life. I'm musical, quite arty. So, you know, I thought, why not, why not try it? And yeah, I just found it a really welcoming, supportive space, and something that for me is, I guess, shown me a different way of looking at content and actually quite confidence building. I think there is something quite confidence-building about making people laugh and writing things that are funny. So, yeah, I found it a really great thing.

SPEAKER_01 5:32

I think also it's those bits where you actually realize that you're funny because when I joined, I must have joined around the same time as you about a year ago, but we must have been going to different times for meetings, it must have been like we were just passing ships in the night. I really love the space, and Lulu creates such an incredible inclusive space. So shout out to her. And I think also what works really well is the fact that I think pretty much everybody in the group that I've met has some form of neurodiverse condition. So whether it be autism, ADHD, dyslexia, dyscalculia, or anything like that, it's open to people that are from different ethnicities, different disabilities and things like that. And it's on the last Sunday of every month, I believe. So if you are thinking about anything to do with comedy, please go on to the Story House website, which will be in the description below. So talking about the fact that I just mentioned that I felt a lot of people were neurodivergent. I believe that you are, like me, a late diagnosed neurodivergent. So I just wanted to ask when and how did the assessment come about for you?

SPEAKER_00 6:48

I mean, you know, I was thinking about this. I guess I've always felt different, you know, even from a young age. And I certainly experienced that first going into nursery school settings. I know that actually one of the first things that I became aware of afterwards is at play school, the staff had actually flagged to my mum they were concerned I had hearing issues because I wasn't responding when they called my name. And although I did at home, there was a difference when I was in a group of people. First time being in that, you know, my hearing got checked, there was no problem with the hearing. But I sort of continued to have, I would say, not all the time, but there were certain difficulties, especially socially through primary school. Then I kind of found my way. And then I'd say from sort of my early teens is when I can remember mental health difficulties from as young as like 13, 14. And I think I just had really a lifetime of various mental health treatments, medications, and I'd got to the age of 40, and at that point had come through some quite difficult personal situations. By sort of early 40s, I was really, really pretty burnt out, and it just felt like nothing was really helping. You know, the things that had been suggested throughout my life were just not really helping and really getting to the root of anything. And I happened to attend some autism training at the time, and I think for me it was just like this moment of feeling so much synergy with what I was experiencing in my life that that's really what led me to explore it further. You know, I talked to a couple of friends who had autistic partners, and I think it was just really interesting because I actually have got a couple of members of my own family who are autistic, but they're both non-verbal. So that had been my only experience up to that date. So I think it was sort of understanding it's a spectrum, and this is actually how it can present, and understanding that, which led me to then seek an assessment. So I was diagnosed in my early 40s, and I'm now 46 for context. So I think that's sort of just over three years ago. And then a year after that, I was actually diagnosed with ADHD as well.

SPEAKER_01 8:56

Usually it's the ADHD, and then the autism is after, so that's quite interesting.

SPEAKER_00 9:02

I think I knew because I had some awareness, if I'm honest, it wasn't a huge shock when it was flagged as part of my autism assessment. I would encourage you to explore a referral for that. That was the way around it was.

SPEAKER_01 9:13

Wow. I learned about autism and ADHD during my PGCE that I was doing, and we only did a very short amount about it, but I was like, maybe I should look into this because I was just intrigued about it. I remember when I was a kid that there was some sort of messaging of you can't be autistic if you are female. And then I did a hyper-focused deep dive and then realized I'd been masking my whole entire life, but the ADHD was the almost extra mask, and then the autism was just waiting to kind of be unleashed. But masking is something that I think it's really important to talk about because you were talking about your experiences in school, and I feel like masking, especially with females, comes in a lot because obviously how we're expected to behave, society, and everything else. But I don't think people understand outside of the neurodiverse community, like how exhausting masking is.

SPEAKER_00 10:17

You're right, it takes so much effort. I think for me, almost kind of mirroring people around me, almost like not consciously doing it, but now I know that's what I was doing because it wasn't me. The effort that takes over it's the cumulative effort that that takes, I think, that leads to so much exhaustion. And I think probably at the time, by my fourth decade of doing that, you know, it was just extreme, extreme burnout at that point. And it's a very, very energy consuming thing. And I think once you understand post-diagnosis, I think it's one of the things I've certainly understood is how important it is to recharge. Because let's be honest, yes, we all know we should be our authentic selves, and I think you know, we we can find spaces that are right for us, but for many of us, we have to go through life still being in certain situations where actually the only option may be to mask, it's just easier to do that, or it's what's required. So it's important to, I think, have that awareness and make sure you do sort of bring yourself right back down. The way someone described it to me, which I think is really brilliant. You know, the thing on a card with the revs that sort of when you're revving at the car, it kind of goes up. It's like you're up here all the time. Sometimes when you're autistic, you've got to bring it all the way right back down when you've got that time to recharge.

SPEAKER_01 11:34

Yeah, that's really important, and that's actually quite a good description because I think that everybody assumes that everybody's on the same playing field, anxieties thinking about things. But what I say to people is imagine that plus 10 times, and then imagine more stresses because you've got people invalidating your conditions, not just to your face, but across media, people discussing it that have no clue about what autism or ADHD is. If you go into an environment, for example, like just say you're going to a new office and you have it that someone is openly talking about, oh, autism's a myth, or oh, well, that person says this. If there was a button to press, which there is not to mask, you would be literally masking and hiding away because you are going to a space where you feel like you can't be yourself. Whereas it's so important to have that space and find that space to recharge. But it's a lot easier said than done coming from two people that are late diagnosed ourselves. Like it took me, how old am I? 34. It took me like 32 years to find my spots in actual physical places where I feel I can be myself. We've talked off this recording about another thing we have in common and another thing that we believe is linked to neurodiversity. When it comes to chronic illnesses, well, of course, it's going to affect your body in various different ways. So I was wondering if you could share your thoughts.

SPEAKER_00 13:15

Yeah, I think it depends on the illness. I live with a chronic illness, but it's kind of indirectly related and not being diagnosed. So I think for me, there's a definite link there. I guess, you know, I'm not, you know, medical enough to say why, but I think certainly if I think about the people I know, many of them deal with chronic illness as well, many neurodivergent people. So, you know, it's just another thing as well too. That's how it sometimes feels. It's another thing to manage and navigate.

SPEAKER_01 13:40

Yeah, it's almost like those ticklists that you don't even know exists, that you've always wanted for life, but then you get given it for autism and you're going, oh no, yep, I've got that symptom. Oh, yes, this thing will learn to that. It's not as simple as it being a bit quirky, a bit niche. And obviously, we have talked about burnout and recharging and things like that. And I was just curious, what kind of things do you do to like personally recharge? Because obviously, if you're not at the story house with Lulu, for example, that's like once a month that we do. So going into different spaces and things like that can be extremely overwhelming. So, what kind of things do you do?

SPEAKER_00 14:21

I think this is really interesting question, Sarah, because actually having autism and ADHD, how do I recharge can actually be quite a difficult thing. So, I guess I try and do social activities because I think I kind of have that need, but also having the space to take a step back and just trying to keep the mix really is actually a good medicine for me. And I think I've come to accept that. That's something that I know I struggled with a little bit because you look around and people are often doing things in groups and you look on social media, and it took me a really long time to actually accept, you know what, my life doesn't look like that, and that's okay, because actually that would be the worst thing for me to be in a restaurant or on some girl's week away or something like that, and I've got to be doing all these things. It's kind of knowing that it's all right for your life to not look the same. And some people might judge that, and some people have judged that, and that's okay, you know, it's it's what's right for you.

SPEAKER_01 15:14

It's then the thing of like, what do people think I should do rather than what do I want to do? Yeah, which is something that I've learned. And like literally when you were just saying about the photos of people get restaurants and on girl and like on girls' holidays, I can completely relate to that. And obviously, still sometimes I get like a little twang of like, oh, I wish I could do that. But then sometimes I go, Who that's a lot. There's a lot of people there. I would be sat in silence because I wouldn't be able to absorb any of the conversation.

SPEAKER_00 15:47

I think once you understand, you truly understand yourself and you understand what's right for you, and actually you do start to become more yourself. Certainly in my case, a lot of people did disappear from my life because they preferred the version of me that was highly masked that did all the things that everyone else did. And you know, I think that's probably a sad truth, but I I've got a couple of really good friends, and I'm continuing to make some nice friends, I think, that are quite similar to me. And that's also great because that's how I will do things with friends, but there's no expectation.

SPEAKER_01 16:14

Yeah, because it's not about the quantity, it's the quality. And I've found that over the years my friendships have shrunk down, but they are like family for me, and they get me. So, like if I am overwhelmed, they will know whether to kind of be kind of saying to me, Oh, come on, you can do it, or it's okay. We're all right, we're in the space, it's all good. And having people that understand that it's so nice, but it does take a while to find those people.

SPEAKER_00 16:44

Yeah, I think that's why groups like this and the autism well-being projects are really important because they help connect with other people as someone that spent the vast majority of my life really trying to fit in and probably from the outside look like I did. I did make friends at school, but it was the whole thing of really just feeling not myself on the outside, severely exhausted outside of the social activities, low mood, anxious, and just not understanding why. It takes a long time to sort of get to that point, but it's a much happier place to be, I think, now.

SPEAKER_01 17:17

Yeah, definitely. And I think that for us, like we're still learning every day about things about us. And I feel as though when it comes to certain things, there's a lot of awareness about it. Yes, you can say, like, oh, I know what autism is, but then it's the understanding of it that might be tricky because we've been as autistic women, there's not a flashing sign going this person's autistic, it's literally all internal. So when they see the kid in the supermarket who is having a meltdown because they can't control their emotions like that, and then they're like, oh gosh, can't believe that's happening. I think that's where we need to be better within society in general, because awareness is great, but it's not, I don't believe that it's getting to the real heart of what it is. And I know that you've like talked to me about how the difference between awareness and understanding, it's not people think it's the same, but it's not.

SPEAKER_00 18:23

It's the acceptance, it's the understanding and the acceptance that I think is we still have quite a way to go. And whilst even with masking, there are certain behaviors. Why is that person expressing themselves in that way? It's because of the way we process information. It's the way that for me, certainly, the way I think and process means that I will communicate a certain way. So I think it's that acceptance also of different styles. Even with all the masking in the world, sometimes it can be very difficult to fine-tune every little part of your communication. So I think understanding why sometimes you know, why a certain social situation might be difficult, having the acceptance that actually that is going to put you in a in a really distressing situation. So, and I've also myself tried to incorporate this if someone behaves in a certain way or communicates a little bit differently to how you might do, thinking like, what's the place they're coming from here? And does it really matter how somebody says something? Should we not just focus on what they're telling us?

SPEAKER_01 19:23

I did think about this where you have discussions when you're in friendship groups about where you're going to meet. And a lot of things will be like, oh, I want to go to that Italian place down the road. But then someone will go, oh no, I don't really like Italian. We go to Chinese place. Yeah, sure. Like that's quite simple. But that's the similar concept that we want. Someone's expressing, I don't feel comfortable in this space. Oh, why don't we try there? Oh, okay. It's very, very similar. But why is it easier for people to discuss what food they want to go to over what makes somebody comfortable and happy in a space?

SPEAKER_00 19:58

Yeah, it's the same thing. You would want people to be comfortable, but I think again, this is where it can be quite tricky, and I'm comfortable in expressing it's not going to be the best place for me, and this is why. And some people are just not on board with that, and that's fine for me. You know, I think that probably just means that situation wasn't meant to be, but it is difficult and it comes back to that acceptance and actually being okay that if somebody can't do what you want them to do, or they express that in a way that is perhaps different to how you would express it, that's okay, and you can accept that.

SPEAKER_01 20:28

Yeah, I know that I could talk to you all day about this, Sammy, but we've actually come to the end of the recording. So I just wanted to thank you firstly for coming to the Story House for this event and being vulnerable and sharing because obviously talking about this, it's great to build the understanding, not just the awareness and also acceptance. I always knew there was another word, but acceptance that's the word that I've been thinking of. But I was wondering whether you had a message of thanks to give to anyone in your life before we wrap up the episode.

SPEAKER_00 21:04

Yes, since we've been talking about friendship, I would like to give thanks to my friend Tom, who's been a friend for 10 years and just thinking about some of the things we've been speaking about and acceptance and you know, just somebody that is a very safe space that I can totally be myself with. He's been a real, I'd say, a pillar in my life these past few years. So thank you to Tom.

SPEAKER_01 21:28

Oh, well, thank you, Tom, for being such an amazing friend to the wonderful Sammy, which I am so happy that we managed to have this conversation. And well, I hope I get to see you at a token comedy collective event soon. Or maybe if you come over to the Autism Wellbeing project, maybe do another episode. We'll see.

SPEAKER_00 21:47

Yeah, I'd love to.

SPEAKER_01 21:49

Thank you so much again, Sammy. And if you are interested in being on the Autism Wellbeing podcast as a guest or suggesting a topic, please email the autism wellbeing podcast at gmail.com. So it's goodbye from me and it's goodbye from Sammy. Thank you, guys.