Tony Mantor: Why Not Me ? - Tori Clarke: Embracing the Journey: Discovering and Thriving with Autism in Adulthood

Episode Date: June 28, 2023

Send us a text What if you discovered you were autistic in your 40s? How would it change your life? Join us as we welcome artist and poet Tori Clarke to share her inspiring story of self-discovery and self-acceptance after being diagnosed with autism. Tori opens up about the emotional rollercoaster she's faced, the cost of masking autism, and how she's learned to embrace her unique journey. In this heartfelt conversation, Tori and I explore the challenges of living with autism and the need for greater understanding and acceptance from society. We discuss the specific issues autistic people face like clothing labels, meal times, and changes in routines and how these can have a drastic effect on their everyday lives. Tune in to this episode for an encouraging and enlightening discussion on how we can all work together to create a more inclusive world for everyone, including those on the autism spectrum. https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Why Not Me The World Podcast, hosted by Tony Mayator. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make your laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. you gain more awareness, acceptance, and a better understanding for autism around the world. Hi, I'm Tony Mantor. Welcome to Why Not Me, the World. Joining us today is artist and poet, Tori Clark.

Hi, Tori. How are you doing today? Oh, I'm good. I'm good. Tony, Tony, Tony, Tony. How are you? I'm doing great. Welcome to the show. Thanks for having me. It's a pleasure to have you here. So let's get started. far away. Let's see what comes out of me today. Well, I'm definitely anxious to hear, and I'm sure that you've got a lot of things to tell our listeners as well. So let's get started by, I think you're originally from London, correct?

Yes. I'm not in London right now, but I am a born and bred Londoner. And I live about an hour or so away in Birmingham at the moment. That's awesome. I've heard that's a great area. So when was you first diagnosed as being autistic? I was diagnosed last year, 2022 in the summer. And that's not to say, I wasn't fully aware of it many decades before. That's pretty interesting. I've heard several stories where people have been diagnosed later in life and many of them because they either had a son. or a daughter or a relative that was diagnosed, and they noticed that they had some of the same traits. So they got checked out and turned out they were autistic as well. Yeah, I've heard of that happening. It's very common. It's usually through the child or,

you know, young family member that's that a parent or somebody will really realize, oh, this is me too. So did you have that, this is me too feeling that, that made you want to go to the doctor and get checked out to see what was going on in your life? Well, I had always felt different as a child, and I know that many people can say they felt different. But I felt there was something fundamentally missing in my understanding of life. It seemed to me that everybody else knew what to do, what to say, and how to go about their life. And although I appeared like a good child, a good pupil at school, I was struggling and I couldn't put my finger on what it was. I felt fundamentally that something was missing and it was very, very hard.

So when you grow up like that, you create coping mechanisms and you create ways of surviving. And it can be so exhausting and so draining. And you feel so great when you get things right. And it's only by chance. So it's impossible to maintain. and then when you get things wrong, you don't understand why. And it feels like the most awful thing in the world. It's catastrophic.

Wow. I just can't imagine the pain and emotions that you went through, and especially at such a young age. So how did you find or what did you find to give you that inner strength to cope with it on a day-to-day basis? So I find with how I feel about things, there are extremities. So it can, I can feel such elation for getting something right and fitting in and the complete opposite for messing something up, not saying the right thing or not saying anything at all. So life was just, it felt like. It felt like,

Like it was a gamble. Every day I was gambling. And every day I was losing. That's tough to take at a young age feeling like you're losing. And lots of times when that happens, people feel like there's no hope. However, the good thing that happened is you did evolve. You found ways to cope. And now you're here.

And I think it's a great thing because now you're telling your story. And hopefully that will inspire others to know that they can do it too. Yeah. what led, what was your original question, what led me? It was the fundamental thing that something felt very wrong. And I did approach my doctors in my early 30s. And I was, unfortunately, I was rebuffed. So I lost another decade of my life.

And when the medical rules changed in England, when I went back 10 years later at the tender age, of 44, I was told I could have an assessment and I would be on a waiting list for two years of which I was. And I then had the assessment and was diagnosed with autism at the age of 45 and a half. So that's, but in answer to your question again, what led me in my 30s to consider that it was autism that I had was that I was working with children and one of the children was diagnosed with at that point it was referred to as a spurges and I thought well what's that and I looked up what it was how it presented itself in girls and boys and I thought bingo so because you

was around a child that that was diagnosed as autistic that gave you enough information by watching his symptoms and doing your research on it and you kind of self-diagnosed yourself. So how was your emotions once you had decided that you are indeed autistic? It was a sad realization because I realized, oh, this isn't going away. And so I had like 10 years to digest all of this and understand all of this before I then had a diagnosis. It's all very strange. It's all. feels very weird and I don't think it's anything that anybody should rush into. It's a learning process and I'm still to this day Tony on a daily basis understanding my own autism and what autism and I'm also noticing ah ah so when I do something I'm like I realize and I forgive myself I just laugh

I just let it go rather than beat myself up about it. That's really good that you found a way to cope with it that way. So many people can't find that coping mechanism and they have a rough time. So with that said, did you have any support from friends or family or teachers that might be able to help you knowing that something wasn't quite right? No, no, no, no. I don't think when I was at school, it wasn't known to me that the teachers were thinking something's a little bit off and I might need support. I wasn't aware of any of that being available. And when we went to school, we got on with it.

And there isn't the sort of help and reassurance that I hope that children have today, regardless of any diagnosis they may or may not have. I just think, you know, we're very much more aware of how we feel. And it's okay to speak about feelings and things like that. but no, there wasn't the support. I just got on with it. Well, of course, you know, 20 years ago, and I've talked with many people that have told me this,

that like 20 years ago, autism wasn't as well known and recognized as it is today. And people that were going into that education or doctoring or anything that was associated with autism, they didn't have, when they went to college, they didn't have a lot of subjects that developed on that. So they were still learning. So now you fast forward to today,

and it's a completely different approach the way they do it. So if you was diagnosed last year and you kind of, you know, you kind of self-taught yourself, and learned how to deal with different situations that you were in. Once you was diagnosed, did that change your life? Did that change your thought process? How did you cope with that at that point?

So when I was diagnosed, I felt very happy on the day. And I felt kind of a bit strange afterwards. And then I'll be honest, Tony. there was a tricky few months. There was almost like a grieving process. There was anger. There was mixed emotions that came up.

And I think it took many months for me to really understand what this meant and what it is. And once I had fully and officially, associated that diagnosis with me and felt no shame about it, that's when I really feel I managed to start healing myself and to let go, to the point where I made some quite drastic changes in my life. And I thought, I must put myself first, my health. the cost of particularly girls masking their autism and trying to fit in and just trying to be lucky every day the cost of that is immense on a woman's health and there are all sorts of things that can

occur like, you know, inflammation and stomach problems and headaches and migraines and IBS and, you know, lots of depression, anxiety, all of that comes into play. So those are just like the side orders that you get with a big serving of autism that have just sort of masked what was really going on. Wow, that's a lot to take in and that's a lot to absorb and and figure out. So with everything that was happening in your life, did you find ways to cope with it? And did you find ways of removing some of that toxic environment that could help you get on with your life? What are some of the changes that you might have made? So I took some drastic measures and I was in a, I would say,

say a very intense career and a job and everything. So I've pulled myself back away from that so that I can spend my time healing for as long as it takes and also to go back to my first love, which is drawing. And now I seem to be writing poetry, which has really helped me in the last three years to process my thoughts because I felt that once I'd stopped the noise of trying to fit in, that these kind of, I could hear myself think and these words would come up and they would rhyme and sometimes they would make me laugh

and sometimes I think, well, I need to share this so I'd write it down. Or sometimes I would get rhymes from talking to friends like I would be messaging friends' responses to questions and things and I would think, and what my response would be like a poem and I would then make that into a poem. So to see that if I share it, it may be of some benefit to somebody else.

So I think I've had spent my whole life in my head, Tony, thinking. And now I'm sharing those thoughts with the world. I am a deep thinker. I think about everything and every detail and every intricate feeling of things. And I can't quite describe it. but when the words come into my head now, I have to stop everything and I write them down because there's a rhythm to them.

And it just feels so nice to get the poems out. Yeah. Well, I think, you know, the analogy that you used are is that noise. I think that's really a key thing because everybody, everyone has certain things that affect them. And for you to say that, you know,

compare noise to fitting in, I think that's pretty integral, you know, to other people. Because the main goal of this podcast is to share thoughts and different approaches for people around the world that deal with autism. And my goal is that like if you're sitting in London, you know, we're having this conversation. And then somebody in New York or L.A. or Spain or wherever the place may be, here's what you're going through and what you're going through and what you're. you've gone through and how you approach it, they might just feel like, oh, I felt that way. Or, you know, then maybe they'll feel less alone that way. So I think that's really, really, I think you've really put it across really good. Now, you sent me, that poem that you, that you

mentioned, you sent me one that I really thought was really good. And, and I, I thought that, that just your thought process in the way that that that you wrote it and and and the way that you approached it i i think that that could be something that that uh you know people that even aren't you know in the autistic world might be able to listen to and and and and get a better understanding because that's another uh thing that i'm trying to do with with this podcast is bring a higher level of understanding to people around the world about autism and how it affects people and how they react and how they integrate and do all that. So if you have that poem, I'd love to have you share it with everyone.

Sure. I'm just looking for it now. And I do want to say as well that when you mentioned about feeling less alone and feeling like you're not the only one in whatever situation diagnosis, whatever thing it is you think you may have, that was pivotal in me in the next stage of my life, in really feeling okay about myself. And I don't want to get too morbid, but it was, it's a deal breaker. It's an absolute deal breaker.

I'm going to stay and I'm going to thrive. I am going to make sure that I enjoy the rest of my life and that I find coping strategies and I find a network of wonderful people that understand me and I can have fulfilling friendships like everybody else. And so, yes, it's very important. And I urge anyone who is listening to this right now who feels that they are alone. don't be afraid to reach out to me or to anybody that you feel may understand what you're going through because that's what I did, Tony. I reached out to somebody who I thought may understand what I'm going through

and that was the turning point in my life. And I honestly believe I'm here today because I reached out and I made that that move, that bold move. So I found the poem called Autism Awareness. Oh, that's great. I'm glad you found it. So, okay, you've got the stage. Here it is. Autism awareness. Autism awareness. Not everyone is aware of autism. It's far less obvious than you can imagine. Some of us kept it so hidden that life became a cataclysm. Is that when animals act like humans? No, that's anthropomorphism. Autism is when you're born. brain takes in messages from the world very differently, and sometimes there are no messages at all, and it can feel like big chunks of life's explanations haven't been given at all. So how do you live,

and how do you cope with great difficulty, and some of us don't? What makes you happy then? Kind people, patience and smiles. It may take me a while in a social situation, to decide my reply, deep deliberation as I rely on the script in my head. And sometimes I don't even know what the heck I just said. So be aware that all of us live beyond this month of awareness every autistic day of the week. Wow, I really like that. When you first sent me that poem, I heard it and I just kind of fell in love with it because it kind of says everything that you need to say. It says how people are different, but yet the same. It tells how the thought process is. It tells how kindness can help make people feel better.

I mean, you just covered everything. Very important, though, is how you covered the fact that it's not just a day or a month. It's a lifelong thing. And I think the biggest thing that we have right now is to get more understanding so that way the people that are aware of it and accept it, understand it, and then that might make it just a little bit easier for everybody to live in this world. Yeah, yeah. That's fantastic. No, thank you for your feedback. And I agree with you.

It's like, okay, I'm aware that there are sharks in the sea, but I don't understand them and I don't know all of their names. It's we're aware of everything, aren't we? You're absolutely right. But how can we help when we don't understand? And that's the key point that you've said is that because I think people have the wrong impression of what autism is, I think some people may think it's a learning difficulty. It's not a learning difficulty.

It doesn't leave. It doesn't stay in the classroom. It follows you all the way home. and it sits with you when you eat, sits with you on the bus. You are autistic, right? It's not just for the classroom. And I think if more people understand that lunch times might be a bit of a tricky thing for autistic kids, who am I going to sit with, who am I going to eat?

Have I got the same thing for lunch? Is everything I'm eating bland? You know, there's so many things to consider. You know, the clothing labels, everything, is there a change? The change of route for a child or even an adult may throw somebody off the entire day. So, yes, I like that. And I think if we all work together and have more understanding, then autism will not even feel like a difference or anything like that.

Yeah, it just everyone blends in. Yeah. Yeah, because, because, you know, I keep telling people that, that, you know, people that aren't autistic, they have, they're, they're all different. Yeah. You know, there's, and there's something, I mean, I had an interview yesterday where I was talking with a person and I said, you know, there's, we'll run into people that aren't autistic and they, and you'll look at them and go, how do they make it in this world? You know, because, because they just act so goofy, you know, and that's just their natural state. So when people, the unfortunate part I think of autism, and I had this conversation just last night with a person that works with autistic children. And she told me that it used to be that autism was like this death sentence or it's like people thought that, oh, I'm so sorry that your child is autistic.

And she would come back and she'd, well, I'm not because he's this or he's that. You know, so I think that I think we have to take that cloud away from, from that word so that people realize that just because someone may be autistic doesn't mean that they can't, can't, you know, function. Doesn't mean they can't integrate into our society. Doesn't mean that they're bad people. It just means that they're a little different than us, and that's all it is. So if you can take and build that so that just like you said, that everybody, everybody can, you know, work together and get to get along together, then all of a sudden it's not a big thing. Yeah, absolutely, absolutely. And I think the future is positive because I think that's just

the way we're going. There will be more understanding. If you imagine in 10 years time, time, we look back at this podcast and we think, oh my goodness, the world's learned so much more about autism and now it's not it's not really it's not even an issue or a problem it's just it's a wonderful thing and that would that would be great and I really think that we will get to that point with people like yourself and me and there's so many people that are working hard on wonderful research and different things to make the world better for autistic people and and ultimately for for the friends and family of autistic people as well. So it can be harmonious.

Absolutely. And that's just a really great way to look at it. So after all these years now, do you have anything that you kind of sit back and you might think about that will just kind of make your laugh, you know, brings a smile to your face? If you do, could you share it with us?

Yeah, I do have a funny story, actually. One of them is When I was younger I shared a bedroom with my younger brother And every morning my mum would come in And draw the curtains And let the sun in And she would say,

It's a great day for the human race And I was so confused I would say to her, What race? What race? And she said the human race And I remember her going on and on And I just never got it

But I took it as life was a race. So what I started doing was just running really fast everywhere. I just ran everywhere. And I actually became the fastest runner at my primary school. And I became exceptionally fast. And I think it's down to that statement because I would say if I ran around to the shop on the corner, I would try and get there in under 10 seconds. we try and beat my personal best every day.

And so things like that, when I look back now and I think, oh, now I understand what my mom meant by that. But there are, there is a lot of funny stories of me in situations. Some of them can't be repeated because I've got the wrong statistic. Some of them are sad. Some of them are funny. But I look back now. And when I get those memories of things,

I just, but I burst out laughing. And I can often be on my own laughing and I'm laughing about something that I realize what was happening, like, say, 20 years ago. And it is funny. Yeah. That's awesome. Because the one thing that I'm hoping people get out of this episode is that, is that, you know, you can find ways to survive in this. you can you can you can take and and and go through your thoughts and and all and process them and and and you can and I think the biggest thing is that is that is that you can transition into into the

world and and and just live your life and and the the key thing that that that that that you that you brought up is is that you found a way to be happy with what you're what you're doing yes definitely Once I am instinctively Tony I knew years ago what kind of life I wanted. I wanted a slower pace of life. I didn't want to be in a situation where I had to think about a job 24-7 and at the weekends. I knew exactly what I needed and it's like my body was kind of giving up so that I could get to that point where I had no choice but to take a slower pace of life and I'm very very happy for it. So I would say to anyone, if you feel that your life is really, really hard and really, really struggling,

see if there's a way that you can reduce or get more help so that you don't have to struggle so much alone. I think I have an advantage because I was able to think of just myself. I don't have children. So I was kind of lucky in that respect to understand it must be harder for other people with full-on situations that they can't remove themselves from. But there is always an easier way to live. Yeah, I think that's probably the most important thing is we as a society gets wrapped up in the fast pace. and it's like kind of going back to your analogy of I have to outrun myself. I have to take and beat my personal best.

And you really don't. All you have to do is find a comfort zone that works for you and then build around that. And then you can allow whatever or whoever you want within that circle so that you can still live the life that you want to. Yeah, absolutely. Can you say that again, Tony? What was it, the comfort zone? Yes. Yeah, yeah.

Finding that comfort zone that you can live within because everyone has their place that they go to so they can re-energize. And that's kind of what I call the comfort zone. So if you have that comfort zone, then once you've re-energized, you can go back into the world and allow the people or the things that you want into it

so that you can maintain, you know, your so-called sanity, I guess. Yes, absolutely. Oh, yeah, definitely. I'm definitely in my comfort zone at this point in my life for the first time ever. And it feels really good, definitely. That's awesome. And I'm just so happy that you have found your comfort zone. There's so many people out there that are still struggling to find theirs,

and hopefully one day they find it. Yeah, absolutely. and that's what's important. Every human deserves to have a fulfilled life, whatever that looks like. But everybody needs that, everybody. Absolutely. Thank you for coming on today.

I really appreciate it. Great conversation, great information, and if this conversation can help one person, it's been a true success. Thank you, Tony. It's been an absolute pleasure and look forward to it helping as many people as it can. Me too. Great conversation.

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