Neurodivergent and Tourette Syndrome with Kez Symcox

Paul Shriever:
 So, Hey guys, my name is Paul. Also with me today is Chantal. Hey, Chantal.
 
 Chantal Boyle:
 Hello, Paul.
 
 Paul Shriever:
 Good to see you. Today we are going to be talking to Benedict Symcox and her daughter Kez.
 
 Benedict Symcox:
 Hi. Hello. Hi.
 
 Paul Shriever:
 Benedict is the chief executive of Family Voice Surrey, which we will hear more about later on. Benedict also has three children all with invisible disabilities and with her today is a daughter Kez. Welcome, guys. Thank you for joining us today. Can you please introduce yourself?
 
 Benedict Symcox:
 Hi, I'm Benedict Symcox and I am chief exec of Family Voice Surrey, which is a parent carer forum we'll talk about later, but I have three young people now, offspring, who all have a variety of disabilities, most of which are invisible, some of which are necessary, but there's nothing about any of them that is obvious.
 
 Kez Symcox:
 I'm Kez. I'm the middle child. I'm 19 and I have all hidden disabilities I think.
 
 Benedict Symcox:
 Yes. Yeah. Although the Tourette's doesn't feel very hidden to me.
 
 Kez Symcox:
 Compared to the rest of them.
 
 Paul Shriever:
 So, Kez, are you happy to sort of disclose and just talk a little bit about your hidden disabilities?
 
 Kez Symcox:
 Yeah. Of course. So I was diagnosed with autism first when I was about 11 and that's been my primary diagnosis pretty much forever, but is more of a secondary now. And then when I was around 16, I was diagnosed with a few other things. Could you please list them? I don't remember.
 
 Benedict Symcox:
 So we have generalized anxiety disorder, depression, eating disorder, traits of PTSD, so post traumatic stress disorder. And then she since developed and been diagnosed with chronic fatigue syndrome, Tourette's and functional neurological disorder came this year and we are waiting for a diagnosis of ADHD, which is likely to come in October.
 
 Paul Shriever:
 That's amazing. So there's clearly quite a few challenges there.
 
 Benedict Symcox:
 I think there are challenges in that I suspect we'll kind of get a better picture with the ADHD diagnosis, but I suspect that cares is just neurodiverse. She's got a different brain and that we label as autistic, ADHD, the Tourette's, the FND. Unfortunately, the way that her brain coped was by masking when she was a little girl, not which wasn't at all in her control, but she looked completely perfect. To the outside world. And unfortunately the fact that her needs weren't met early enough or appropriately enough, because we didn't fully understand what was going on meant that she developed a raft of mental health difficulties. And that's been, it's been a big part of a big, possibly that it's yeah. I would say it's harder to deal with mental health difficulties than it is with autism or the Tourette's is, the Tourette's has come on later.
 
 Kez Symcox:
 Yeah. It started around when I was 14, but it only got bad, I think probably a big trigger probably will have been COVID.
 
 Chantal Boyle:
 So your Montana, which you can explain it to everybody in a moment why we're calling it Montana and the words that you use, can you sort of predetermine them or do they just come from somewhere and you don't know where?
 
 Benedict Symcox:
 Montana, which is what we call her ticks has a foul mouth, absolutely foul and that's kind of developed, but then there are things where a tick can go on for a really long time and it can sound ...
 
 Kez Symcox:
 They trigger each other. So if I say something like half a sentence, it'll trigger the second half of the sentence. So I end up just talking and talking and talking because I've just set off, a whole load of a whole series of ticks.
 
 Benedict Symcox:
 The thing that's harder as a mum is when she starts hitting herself or scratching. So there are times when she's got awful scabs all over her face because she scratched herself to bleeding point or she's hit her hand on the desks so hard that she's got a bruise.
 
 Chantal Boyle:
 Is that like stimming or is that completely different?
 
 Kez Symcox:
 No, because I do stim and I know my stimming very well. I have a lot of ticks that look like stimming, but I know that they're not because it doesn't feel the same at all.
 
 Paul Shriever:
 By being neuro diverse, do you know, guys, is it something where these conditions crossover is that sort of typical?
 
 Kez Symcox:
 Yeah. Co-morbidities is what you'd call that. And it's really, really common. So I love it because I follow various Instagram pages and Tourette's pages and autism pages on Instagram. And they both talk about co-morbidities and they both have overlaps, but they talk about co-morbidities within Tourette's or within autism. I'm just comorbid human.
 
 Paul Shriever:
 In terms of diagnosis, was it something that was staggered? How did you kind of get to the point where you thought I have this condition?
 
 Benedict Symcox:
 I had an awareness of autism and particularly Asperger's syndrome before I had children. I don't know where from. It was just, I was aware of it. And when my eldest was a year old, I started thinking there is some things here that are a little bit peculiar. He was eventually diagnosed by CAMHS, which is the Child and Adolescent Mental Health Services when he was six. Kez was first referred to the same service when she was four years old. So actually at around the same time, but ...
 
 Kez Symcox:
 They didn't want me to be autistic.
 
 Benedict Symcox:
 They didn't want her to be autistic. We actually, it was only when she was seven that she got, mentally she was not well at all. And she was rereferred to that service. And at that point, I said, look, she needs some therapy. I know she does bear in mind that I think she's on the autistic spectrum based on a range of things.
 
 Benedict Symcox:
 And all I was saying to them is if she is talking, therapy is going to have to be approached a little bit differently because communication is difficult when you're autistic, it's difficult. Maybe it's different is a better way of describing it. They wouldn't listen to me. And that I think was really frustrating because I wasn't asking for a diagnosis of autism. I was asking for flexibility in how the therapist communicated that went on for two and a half years or so, not very successfully. And when we left that service, we went to see paediatrician who within 10 minutes diagnosed Asperger's syndrome.
 
 Benedict Symcox:
 And that has, Kez's history with mental health difficulties has meant that she's had a number of, or kind of overall assessments. And every single one comes up with autism as the primary diagnosis. The other issue was that often this happens in families like ours is that if a younger sibling presents with difficulties, the professionals will ...
 
 Kez Symcox:
 They think that you're picking up on traits just as a younger sibling.
 
 Benedict Symcox:
 Yes. They talk about learned behaviors. There's a real challenge, particularly when you've got young children where diagnosis isn't straightforward. And a lot of the professionals will say, we want to meet the need, we don't want to focus on diagnosis. The difficulty there is, is that for a lot of families and a lot of young people themselves, having that diagnosis, that label allows you to understand better, what's different. Kez has got to the stage where, because for years and years and years, she was told that there was nothing wrong with her. A diagnosis is actually incredibly important to her because it's something where she can say, look, I'm not making it up, I'm not a fraud.
 
 Kez Symcox:
 With a diagnosis, it means that I've made friends with Tourette's and ticks. And it's made me feel a lot more like a human. I couldn't have done that without the diagnosis. Really.
 
 Paul Shriever:
 I'm just interested to know how you kind of lead with your conditions. Is that one which not trumps, but do you say I have co-morbidities or do you say I have autism? Or do you say I have Tourette's
 
 Kez Symcox:
 I usually say I have Tourette's because that's the only one that people can really notice. I tend to mask around new people anyway. So the autism only really comes up either if I tick it or if ... It's a bit annoying being told. Yeah, oh no. I'm not a medical professional, but you seem like you're not autistic. Like I've had repeatedly because it's not just one diagnosis. I've had three or four different professionals immediately say, yeah, you're autistic, mate.
 
 Benedict Symcox:
 And actually that's in there been periods of time through adolescence where, Kez went I'm not autistic, they've got it wrong.
 
 Paul Shriever:
 How is Tourette's perceived? How do you see people reacting to you with it?
 
 Kez Symcox:
 It feels like everyone should know about it by now, because it's sort of where I live on the internet, but then I forget that not everyone lives there on the internet. So when I go out and people are like, that's really weird. I just get a bit confused.
 
 Benedict Symcox:
 Kez has been using the sunflower lanyard for years.
 
 Kez Symcox:
 Since they started.
 
 Benedict Symcox:
 Since they started really, because every now and again, she would either not be able to speak or she'd freeze up or she'd look very anxious and something was wrong in that. That just gave her reassurance that it says to the world leave me alone or help me, but don't judge and don't get in my way.
 
 Paul Shriever:
 Do you think the sunflower is needed in society?
 
 Kez Symcox:
 Yeah, I Love it. It's given me so much confidence. Like we were saying with Tourette's out and about, when I wear my sunflower lanyard, I also have a Tourette's action card now. I just feel a bit safer.
 
 Benedict Symcox:
 When I first started using the sunflower lanyard it was with my eldest in mind, who would never touch a sunflower lanyard let alone wear one, but if I wore it and he had a meltdown in the road, at least I had something. Even I know that not everybody knows about it, but if they do, then there's immediately ahhh, rather than looking at me as if I am a really, really, really bad mother, there was a kind of, often it's pity, which is never brilliant, but it's better than blame. But even if they don't, it gave me a little bit of confidence that I've done as much as I can to show to the world subtly that we're a bit different.
 
 Paul Shriever:
 If there was a reaction that you got from someone from wearing a sunflower, what would it be?
 
 Benedict Symcox:
 The first thing that I want as a mum is not to feel blamed for what often appears inappropriate. It might be that I have a child in a push chair that looks far too old to be in a push chair. And the amount of blame that you get in looks from people. If that's the case in my experience, most of the time it's been disapproval. Often the best thing actually is without words is just make eye contact. And if you can kind of tell perfectly good, you need to help. That's what it is. It's about awareness. If society could have compassionate awareness of the fact that some of us have different lives, that's all we're after. Really.
 
 Paul Shriever:
 I'm just trying to understand just a little bit more about how you kind of deal with that on a day-to-day basis. And what is that kind of typical day like for you as a mum?
 
 Benedict Symcox:
 So for starts, luckily, I've been very fortunate in that I also have a lovely husband. We've been together for a long time. We're a team around this. The other thing that's really important is that it's my normal, I haven't known anything else. I needed as an emotional support on a ...
 
 Kez Symcox:
 Daily, hourly, weekly basis.
 
 Benedict Symcox:
 Pretty much it varies, but I think it's fair to say that they kind of all expect me to be on call at any given time.
 
 Paul Shriever:
 How do you cope? Has it tested you, your mentality? You know your mindset, your stability, it must be challenging for you as well.
 
 Benedict Symcox:
 I have struggled with anxiety and depression for a long time.
 
 Kez Symcox:
 No, you're lying. Mum's faking it now, oops sorry!
 
 Benedict Symcox:
 I'm on antidepressants at the moment. I've had over the years, I've had a number of physical health problems. It's really, really common. When you look, parent carers often have their own health issues to deal with because stuff comes out one way or the other, doesn't it? Sleep is an issue. You just get on with it really. It's been really lovely to start working. I've been working now for the last couple of years, kind of fell into the world of work. One of the things that people often don't realize is the amount of paperwork it takes to support a child with disabilities. And that is it's a huge amount. I think, as humans, we have often more resilience than we think we do. And I think one of the big things is you have to realize that you as mum or dad are probably not going to be enough. And that's very, very hard to number one, I'm not enough for my child. Number two, I have to ask for help which means acknowledging that I can't do everything.
 
 Paul Shriever:
 Kez, what are your hopes for the future?
 
 Kez Symcox:
 I just kind of hope that I can make enough money to move out because, I love my house, I love my family, I love my room, but I don't want to be 25 and still living at home.
 
 Benedict Symcox:
 One of things that Kez talks about a lot is, she's really passionate about raising awareness in society of minority issues, particularly disability issues. Is there some way of building on that, that there must be somewhere either in the charity sector or indeed within local authorities, a space for her to have that kind of employment that uses what is really a ridiculous amount of life experience given her age.
 
 Chantal Boyle:
 I can see you doing something with like advocate, policy change, and help them to drive that forward. That side. I could see you doing that, Kez.
 
 Paul Shriever:
 If there was one obstacle or one thing about your condition that got in the way, or was the biggest thing that you face, what would that be? Is there one standout thing? Like, is it your ticks for example?
 
 Kez Symcox:
 No, my ticks are a big one. My fatigue is a big one and my anxiety is a massive one. Those are the three biggest.
 
 Benedict Symcox:
 The fatigue is the one for me that feels implacable, unchangeable, and controllable.
 
 Paul Shriever:
 Is there any advice to someone that you want to give, and it can be to somebody experiencing the same conditions, Benedict or Kez. Do you have any advice for people?
 
 Benedict Symcox:
 I think my advice is it'll be okay.
 
 Kez Symcox:
 No it won't.
 
 Benedict Symcox:
 I don't know what okay will look like for you, but it will be okay. Where do you find support the where do you …? There's loads of things and it will depend on the condition you're dealing with. It will depend on your ability, it will depend on where you are. It exists. We are actually as much as there are issues and there's a lot to work on actually in the United Kingdom I think we're very fortunate. We have systems in place that should help. They don't a lot of the time, but they are at least there. Take it five minutes at a time. If that's all you can manage. And if you can't manage five minutes, go lock yourself in the loo for 30 seconds. If you can get through 30 seconds, you can probably get through the next 30 seconds.
 
 Paul Shriever:
 Thank you. Kez, did you want to say anything or you're all right?
 
 Kez Symcox:
 Yeah, my biggest advice usually is to find community, whether you've just been diagnosed with something or you've got a child that's been diagnosed with something, or you've got a friend who's been diagnosed with something, I would find a community and do a little bit of research because not excessively, because I'm a bit obsessive, but it's not necessary for everyone, but yeah, no, having people who get it is really nice, especially if you've been diagnosed with something like that.
 
 Paul Shriever:
 I think, Kez, you're very, very, very fortunate to have a mum like Benedict. It's been a real pleasure talking to you both. And thank you for just sharing your thoughts and having a conversation. It's been lovely, really interesting.
 
 Chantal Boyle:
 Nice to meet you, Kez.