The Sunflower Conversations

Exceed your limitations

May 02, 2021 Hidden Disabilities Sunflower
The Sunflower Conversations
Exceed your limitations
Chapters
The Sunflower Conversations
Exceed your limitations
May 02, 2021
Hidden Disabilities Sunflower

Exceed your limitations

Mark Charlesworth has a multitude of health conditions including, autism, ADHD, epilepsy and PTSD that were diagnosed later in life.

In this conversation we hear how Mark has altered his working pattern to his advantage. He now advises businesses to recognise the talents that exist in neuro diverse employees and how to support them.

Mark also describes his experiences with wearing the Sunflower and how it has given him a sense of security when going out.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower

Visit the Hidden Disabilities Sunflower website.

Show Notes Transcript

Exceed your limitations

Mark Charlesworth has a multitude of health conditions including, autism, ADHD, epilepsy and PTSD that were diagnosed later in life.

In this conversation we hear how Mark has altered his working pattern to his advantage. He now advises businesses to recognise the talents that exist in neuro diverse employees and how to support them.

Mark also describes his experiences with wearing the Sunflower and how it has given him a sense of security when going out.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower

Visit the Hidden Disabilities Sunflower website.

Paul Shriever:

Today, we're going to be talking to Mark Charlesworth. Welcome Mark.

Mark Charlesworth:

Hello, thanks for having me.

Paul Shriever:

Please can we start with you telling us what your conditions are?

Mark Charlesworth:

I have ADHD. I have autism spectrum condition, brackets, Asperger's. I also have frontal lobe epilepsy and I also have PTSD.

Paul Shriever:

Goodness me, that's quite a long list.

Mark Charlesworth:

Yeah, I collect them like Panini stickers. Whether that's classed as a full set, I don't know, but there's people with more conditions than I have. Heading for a full set.

Paul Shriever:

Yeah, goodness me. The diagnosis for that, was that something that was all at the same time? How did that come about? Can you just tell us a bit about that?

Mark Charlesworth:

Yes, I was diagnosed in my mid to late teens, well, seizures started mid-teens and I was diagnosed late teens for my epilepsy. My ADHD was diagnosed in 2012. I was about 34. Born '78, so I'll let you do the maths. I think I was about 32, 34, yeah, 34. So I was diagnosed with ADHD-like frontal lobe syndrome, which is essentially ADHD, but with a couple of elements to it. At the same time I was diagnosed, by the same psychiatrist, with autism-like impairment. Now, when I was diagnosed in 2012, it was running off the DSM-IV. So you could either have ADHD or autism.

Paul Shriever:

Mark, what's DSM-IV? What was that? What does that mean?

Mark Charlesworth:

The Diagnostic Statistical Manual, it's the American Psychiatry Association. It's essentially the recipe where you have to meet the diagnostic threshold. So you have to have, is it four out of six of one element if you're an adult, or six of eight if you're a child, or whatever that is for the different elements. Then if you meet that threshold then they can diagnose you with. The DSM-V came out a few years ago, and they now believe, yes, you can have ADHD and autism. So last year my diagnosis was upgraded, autism version two, to the Asperger's, well, autism spectrum condition, brackets, Asperger's.

Chantal Boyle:

That long list of conditions. How did they affect you? What order, I guess, did you first start experiencing those conditions?

Mark Charlesworth:

The seizures didn't start while my mid to late teens. With my epilepsy, the frontal lobe epilepsy is associated with behavioural difficulties. I think I was very lucky in the fact that my schooling, and parenting, and family and friends around us, just everything just happened to fall into the right place, and I had lots of good scaffolding around me by coincidence, I think, of society than anything purposeful. I was raised by people who worked in the police service and nursing. So they were always on a shift. It was a quiet household. So, with the autism, and noise, and things like that, there was not much noise. There wasn't all the bright lights that there is today. If you did catch the train, it was a bit more orderly and organized, and plenty of good manners and so on. My ADHD, I noticed really at high school.

Paul Shriever:

Did you know what it was then, Mark? Was it something that you felt was wrong?

Mark Charlesworth:

I was just always thought a bit eccentric. You look at things like autism and you think, "Ah, well I didn't have any developmental issues, so I can't be autistic." Then we never explored further. The ADHD, "Ah, that's for small naughty boys." Obviously we know a lot more than that now, that's just a small part of it, and that they're not naughty, it's just they're not behaving in a specific way that society wants.

Chantal Boyle:

Yeah.

Paul Shriever:

Was it something that was flagged by somebody else or was it you saying to the world, your family, your parents, "I think there's something wrong"? I'm interested to know how it came about.

Mark Charlesworth:

I knew I was always a bit different, and I was always thought just a bit eccentric. As lots of people around me were. Eccentricity was kind of an accepted norm. For some reason in today's society, eccentrics, people are like, "Oh, you're a bit weird." It's like, "No, I'm just a bit eccentric. Your norm and my norm are just two different things, they're both equally acceptable." In the '80s and '90s, when I was growing up, it wasn't really thought about, ADHD, and autism, and so on. It is now. It was in 2004, maybe five, I was in the pub, of all places. We'd moved up to Northumberland. There was a lady who was a teacher at a school that looked after kids who'd got in a bit of trouble, and they also had ADHD, autism, and lots of other conditions. We were just sat in the pub one day, just me and her, and we were just having a chinwag, and she said, "You've got ADHD." I said, "Have I?"

Paul Shriever:

Is that how you discovered it Mark?

Mark Charlesworth:

When I went to look it up, I went, "Oh yes, tick, tick, not sure about that, but yes, yes." You know, going through the information that was available back then. So we chased a diagnosis.

Paul Shriever:

How do these conditions affect you, day-to-day? How does it affect you?

Mark Charlesworth:

The ADHD, there's working memory difficulties. My long-term memory's fantastic, but working memory is a bit difficult. Whether that's holding something in mind as I'm talking now, I might think, "Oh, I want to tell you that," but I'll forget. Or you might ask me a question, and if somebody else answered, I'll forget either the question or my answer. And I'm like, "Hang on, where did I just go with that?" I find it difficult to queue and wait. It depends where and how that queuing is. Everyone gets annoyed in a queue, it's like, "Come on, why are we waiting?" But for somebody with ADHD and autism, we have that difficulty with queuing, with waiting. It's not that we're impatient people, it's just, we need to feel... We're either feeling trapped, or we need to make progress, or whatever is active at that time in my mind. Also, there's an activation thing with the ADHD that I'll struggle to get started on something, or, I can be over-aroused in that, okay, I was just going to cut the grass, but actually what I've done is cut the tree down, I've cut the grass, I've tidied the hedge, cleaned the car.

Chantal Boyle:

Have you developed strategies, mechanics, to help you with those different things that you've just told us about?

Mark Charlesworth:

Yeah. So what I do, one of the strategies I have is, I just don't go anywhere when it's busy. I'd rather pay the £8.00 for a delivery.

Chantal Boyle:

So when you don't have a choice and you have to go out, like, that delivery method isn't available, you wear the Sunflower? What do you think of the hidden disability Sunflower?

Mark Charlesworth:

I think it's a fantastic scheme. I notice now, actually, on the new ones, which I think is really good, it doesn't break just in one place.

Chantal Boyle:

That's right.

Mark Charlesworth:

There's lots of little breaks in it, and I think that's a lot better. So I'm a little bit less worried as an epileptic wearing it. I wore it on a night out when I went out with some friends, and nobody challenged me. When I had it in the Lakes, if somebody did ask, I just showed, "Oh, I've got an exemption," and showed them the thing, "Ah, right, okay."

Paul Shriever:

Does it help you Mark? When you're wearing it, is it something that helps you?

Mark Charlesworth:

The thing with autism, you don't like a shining light on you, but I like how it empowers me.

Paul Shriever:

That's good.

Mark Charlesworth:

Understanding your own condition is a big part of it. Some people don't like the word "limitation", but if you understand where your limitations are, you can then get over them. You can put things in place to overcome them.

Paul Shriever:

I think, Mark, also with age, you start to know what to avoid and what to do, and I think with experience that helps.

Mark Charlesworth:

Somebody at 20 is going to be like, "[crosstalk 00:08:42] this is all very stressful."

Paul Shriever:

Do you have any experiences, just on the off-chance, of you using the Sunflower, that you can perhaps share with us?

Mark Charlesworth:

Yeah, as I say, I went on a night out in September, just before the lockdown. I think it was September the 18th or 19th I went down. It was one or two days before they decided to re-lockdown. I didn't feel anybody patronized me. I didn't feel that anybody belittled me. They just went, "Ah, right, okay. So you need some support. Do you need... Oh right, no, you don't need support right now. That's fine." I went, a very recent experience, for my first COVID jab the other week. There was somebody in the queue, couldn't recognize her again, because she had a face mask on, but she didn't seem to say to anybody else either before or after me, and there was a queue of about 15 people behind me. She just kind of looked at me, went, "Oh, don't worry, the queue's moving fast." She kind of looked at the badge and thought, "I know what the response is here."

Chantal Boyle:

That's excellent.

Paul Shriever:

It can be sometimes a really useful way of just triggering conversation, and that trigger can just help make everybody feel a bit more relaxed. That's what I've heard from speaking with others about it.

Chantal Boyle:

Was there support from, I guess, from the medical profession for you to understand what diagnosis you have, and how you to best make adjustments for yourself?

Mark Charlesworth:

Some people don't like the label high- or low-functioning, but because I'm high-functioning, I find I kind of fall into the cracks. I'm highly impaired, but I'm high-functioning, but I'm highly impaired on a day-to-day basis. From friends and family, they've all been supportive. It's like, "Yeah, ah, that's why you do that."

Chantal Boyle:

Yes.

Paul Shriever:

Is it something that has had to evolve and change with that in mind. I mean, if you have children, or your wife, is that something that has shifted?

Mark Charlesworth:

No, nothing has changed. My wife, she's kind of open and flexible and understanding, you know, as an autistic, we don't always like hugs and things like that. So she kind of puts up with that. That's fine. My son is just like, "Yeah, Daddy's off on one again."

Paul Shriever:

What about work, Mark? I'm just interested to know how your conditions affect you with work.

Mark Charlesworth:

What I do as a self-employed person, I help coach people with my conditions. I think the self-employment is perfect for me because I'm not tied to a role, I'm not going to... This is one of those coping mechanisms that I was talking about earlier. With ADHD, all the words are up in my mind here, and I want to write, or talk, some notes, whatever, a letter, whatever it might be, but that blank piece of paper in front of me, I struggle to get that out. If that's not my time for writing, I just leave it and I walk away. Once you understand your own condition, you can work around it and you think, "Well, okay, I'll put a longer deadline in."

Chantal Boyle:

Yeah, that's a really good point, isn't it? I think that's a really valuable piece of advice for everyone. Don't fight yourself. Sometimes you're in the zone and you can just crack through things, and other times it's just not working. It's just not happening.

Mark Charlesworth:

Yeah, that's true for everybody, for any condition as well. Any limitation can be overcome.

Chantal Boyle:

So advising companies to recognize that, and to make accommodations, that, okay, you might have a couple of hours where this person's not doing exactly what you have employed them to do, but you're going to get double the amount once they're back in that groove.

Paul Shriever:

I think with time, and this is something that we've been talking about a bit recently, how businesses interview and talk to people and just expect people to be, that needs to shift and change now. The danger is that interview process, for example, is just one way, and unless you fit into that and you can do it that way, you're not going to be accepted, or you're not going to be right. That doesn't mean you're not good. It's just that you do things in a slightly different way. So if you've got autism, you still have so much to offer. It's kind of shifting people's ideas and businesses about how to do things, and being a bit more open-minded about that.

Chantal Boyle:

In your experience throughout your journey, have you noticed that there is a shift from businesses and that they are wanting to talk to you to find out what's the best way to employ a neuro-diverse person?

Mark Charlesworth:

Yes, they are. There's a few that it's a real struggle to get them moving forward with this. It should be as essential as health and safety, because it affects everybody somewhere along the line.

Paul Shriever:

Absolutely.

Mark Charlesworth:

The anxiety that comes around with autism, I mean, the other anxiety is very genuine and that's significant and shouldn't be ignored. The autistic anxiety is slightly different in that it will never go away. You'll always have an anxiety about something.

Paul Shriever:

Mark, how do you see the autism spectrum, in terms of how it's perceived? Is it something that's stereotypical, or is it positive as it's changed?

Mark Charlesworth:

There's a lot of interest, a lot more so than there was a few years ago. I'm not actually having to fight for work, people are coming to me rather than me having to go to them.

Paul Shriever:

That's encouraging.

Mark Charlesworth:

You know, the company thought that they were doing enough, but it happened to be too late. It's not what you're doing, it's what you're missing that you can be applying. Organizations are kind of realizing this and, well, "Ooh, hang on a minute, are we doing this the right way, and are we doing it enough?"

Paul Shriever:

It's interesting the way that you're saying that there's more interest now in it, and awareness. Why do you think that is?

Chantal Boyle:

Is it to do with the National Autistic Society, for example, and World Autism Awareness Week and Day? Is it just the momentum of those really successful campaigns? And do you see them as successful?

Mark Charlesworth:

It makes people think about it, and it's like, "Ooh, autism." But if you just change one person's viewpoint and get rid of a myth in one person, that's had a positive effect.

Chantal Boyle:

Yeah.

Mark Charlesworth:

I'm not a huge fan of it, because I think, "Well, you're thinking about this particular topic on this day, which is great, but what are you doing the rest of the year?"

Paul Shriever:

It's really interesting, Mark, you say that, because I've spoken with other people that are autistic, and they've said exactly the same thing, that it's a 365 days of the year. It's not something that you live with for one week, or one month. It's something you live with always. And that it needs to be thought about and talked about all the time.

Mark Charlesworth:

Exactly.

Chantal Boyle:

It sounds to me that your health conditions, epilepsy, ADHD, autism, Asperger's, there's lots of positive traits from those that you've been able to use to craft what you're doing now in your employment. I don't sense that you have big barriers. Is that observation wrong?

Mark Charlesworth:

It's not wrong, but it's because I've put those coping strategies in place, and my coping mechanism, if you like, is just not going out.

Paul Shriever:

What's the reaction you want from someone, if you're wearing a hidden disabilities lanyard?

Mark Charlesworth:

Patience and understanding. I just need, maybe, a little bit of extra time, or... I don't want sympathy.

Paul Shriever:

Mark, is it something that you will continue to use?

Mark Charlesworth:

Yes, it is, in short. I don't have to explain, or justify, or apologize for my condition. I just go, "Look, there you go. I've got a condition. I just need a bit of time and space, understanding." The great thing about this, as well, this lanyard, you can have any number of conditions. Yes, it says you've got a hidden disability that you need some support with, or understanding, or patience, or whatever it might be, but nobody knows what that is. So they just know that, "Ah, right, you need support, or attention." Because some people don't like to say what their condition is, but I think it's a fantastic bit of kit.

Chantal Boyle:

Thank you so much for your time today, Mark. We really enjoyed our conversation with you. It's been so enlightening to hear about all of the different health conditions that you've got. You haven't had them as an adversity. You've used them to help others as well, and to encourage the workplace to see the positives in employing people who are neuro-diverse. I think that it makes for a wonderful society that we all want to live in and, and share. So thank you so much for your time today.