Jon Roberts, an author and parent of a young autistic daughter, has turned their personal experiences into a series of children’s books.
In the latest episode of The Level Playing Field Podcast, Jon shares how his daughter Kaya inspired Lilly & Myles: The Match – a story that explores the excitement and challenges of attending football through the eyes of an autistic child.
The podcast episode can be found here, or via your chosen podcast platform and the full transcript is available below.
Find out more about “Lilly & Myles: The Match” here, or via many other book sellers. More about Jon and Kaya, can be found here.
Liam: For those who might not know who your work. Jon, can you start by telling us a bit about yourself and your daughter, Kaya.
Jon: Kaya is now 13, coming on 14, and she was first diagnosed when she was three years old. As a parent, we were not. Well, we kind of thought something was on the horizon because of the way she was active when she was growing up. But, when it comes as a diagnosis, it still becomes a, a shock to the family. But to be honest, it is. I don’t. It sound horrible, but this. It’s not been as bad as a lot of people make out about autism. It’s been a learning curve, but it’s been a pleasurable and interesting learning curve as well.
Liam: Do you have other children apart from Kaya?
Jon: No. No, she was our only child.
Liam: You kind of said like, it’s not, not as bad as you, may have heard from other people. Is this from people, you know, and just kind of people in society and how they kind of view autism?
Jon: Both. I suppose, I suppose we, we’ve. Well, since we’ve had k, we’ve met quite a lot of people withautistic children as well. And they’re probably under the same sort of feeling as, as. As well, is that whenyou first hear that your child got autism, that you’re going to have a long, horrible ride ahead of you. And I don’t think that is the case.
It all kind of stemmed back from when we were taking her to the park because like you said that she’s her only child. We’d sit her on the swing and there’d be other children next to us and they’d be interacting with their parents. And Kaya wasn’t doing that. She wasn’t smiling. And she also enjoyed her own time and sheenjoyed lining things up like acorns in the park. And that’s when we first thought something might be a little bit different to all the other children that are in the park. So we had a diagnosis and ye. That came back as, autism. Then. Since then, we’ve, we’ve learned a lot about autism. We’ve met a lot of people with autistic children. We’ve lot met a lot of autistic people. It’s been a lovely ride so far. It’s been lovely.
Liam: You’ve written a series of books about Kaia’s experience with her dog, but it’s.
Jon: Roughly based on Kaya, because I’d written another book called through the Eyes of Be, and that was purely about Kaya. But this book is Lily and miles. Lily is CAAIO’s middle name and Miles was my wife’s grands dog. We haven’t actually got a dog ourselves just yet. We are in the process of getting an assist and stuff. Oay, because we’ve got a cat and there’s an old cat, they sort of suggested that we wait for her to disappear. Die. To die before we have a dog. So, yeah, we’re in the process of having a dog. But, yes, and I thought that would be a nice story and hopefully the whole, book series is going to go on. We’ve already had Lillian Miles the Torch before this book, and that did very well. And now I wanted to touch one on football as well because Kaia actually likes football. She really enjoys, even though that you hear about people saying about autistic children being overloaded with the sounds and people.
She actually quite enjoys a football match and she enjoys the cheering, she gets into the singing and shereally does enjoy a good football match. So I thought what a perfect way to write a book to have Lily and Miles with the surrounding to so hopefully teach, the parents that go into a football match with autistic children. It isn’t that bad and it’s a nice friendly atmosphere.
Liam: Is that a background that you’ve done before then, like kind of writing children’s books, or is this something you decided, oh, I want to do this? I think there’s something whereabouts people may be able to learn from, the fictional characters, Lily and Myles, but obviously based on your daughter.
Jon: When I was growing up, my wife said, God, you know what this, she’s changing so fast and she’s coming with new traits and things like that. It would be a shame to forget them all. So we, well, I startedwriting like a little diary. And then as I was writing the diary, we were going to her, local school, which her local school was just a mainstream school. And a lot of the children there were asking questions about Kay and why was she allowed to run around? Why doesn’t she talk? Why did she flap her hands? So I thought that the diae that I was writing seemed to sort of answer a lot of these questions. So I started writing it as in a children’s book because at the time they were about 4 or 5 years old. And then I found Hannah, which ismy illustrator for all the books. She went off and through these amazing pictures for the books as well and I thought, well, you know, people looked at it and they thought, oh, that’d be lovely. As children’sbook. I got in touch with Graphic and then they published it and then it s sort of blossomed on from there then.
Liam: So what kind of feedback have you got them from? Non autistic families? Autistic families, Teachers?
Jon: They’re very positive. A lot of parents have come forward and said thanks for the book, because it’s not only taught them, but it’s taught the siblings and the grandparents as well. So everyone seems tohave had some positive feedback from it. And some people have actually gone ahead and bought a load of copies and distributed them across a lot of schools as well. So a lot of the primary schools, specifically in sort of Wales and South Wales, they’ve been, given to a lot of schools and they’ve also been translated into Welsh as well.
Liam: There are two Welsh people in the staff. I know that. And they speak fluent Welsh. They’ll be very proud, as they like to remind us that actually English is their second language and Welsh their first. There’s a sayingthat if you meet one person with autism, you met one person with autism. Did you factor this in when you kind of writing your books? Because there is obviously a worry that when people read books on autism, they view it as what this is, the definitive answer to autism. Where’s actually it might be coming from one person’s experience or, or one person’s perspective or someone with autism. Is that something that kind of factored into your writing when writing this?
Jon: Yes, absolutely. the first book, through the Eyes of B was specifically about Kaya and how she interacts with the world around her. The second book was through the Eyes of Us, which was with Kaya and her friend Martha. And Martha was also autistic as well. And that is exactly what I wanted to sort of show people is that not every person who is autistic is exactly the same as everyone else who’s autistic. I wanted to show the differences. There’s some similarities, but there’s also a lot of differences as well.
Liam: Was that something as a parent you also had to kind of understand and learn? Because I’m guessing, like, when you talk to a specialist regarding autism, they’re talking very kind of granular, I’m guessing, like. So I’m autistic myself. I was diagnosed very late in life, literally only two or three years ago, and I, I discovered kind of my own autism from working at level playing field and working with people with autism and a certain traits. I was like, oh my God. Like, I do this and I never, I never recognised it as autistic. I just recognised it as either, me being difficult on me, just not getting something and I’m just not understanding and then getting frustrated about it. And when I was going through, thediagnosis, which takes years, it took years for me to get through and you’re doing tests and I always. I found it quite interesting that when they’re kind of talking to you, I don’t know if it’s because I was later in life, essentially they were telling me there’s nothing we can really do to kind of help you. What we’re doing isessentially giving you the tools to understand where about something might be difficult because that’s your autism. It’s not because you are being difficult. I’m interested to know, as a parent, having a younger child who is diagnosed with autism, how was it explained to you, like what autism was?
Jon: at the very beginning, just, it was a. Of a funn diagnosis. We went to the hospital and we were there for about half an hour and the doctor there just sat down and watched Kaya moving around in his room and m.How she interacted with him. I must admit it was a very, very quick diagnosis. I don’t know whetherit’because she was a lot younger then and it was 10 years ago, I don’t know. But within about half an hour he just said, yep, she was s autistic. And, that was the diagnosis and that was quite surprising on how quick it was. And then he just basically gave his a pile of books and leaflets to read which were sort of not very helpful because, like said, everyone is completely different. How can you read a book about waterismism and understand that’s what she’s going to be like for the rest of her life? M. and this is when we started to investigate groups of people, other parents, into the sort of same, position as where we were. And that became very, very helpful. Just basically meeting the parents, meeting the children withautism and basically living with Kaya and learning and being incredibly patient. And she’s taught as a hell of a lot about being patient and understanding. And it’s been aly lovely ride so far.
Liam: Well, I mean, patience and understanding is not something I would probably associate with football fans. So what, what inspired you to write a book about football? so your latest book, Lily and Myles the Match comes out on August 14th. Why do something on football and attending live sport?
Jon: It’s something that we both enjoy and something that we wanted to get involved with and we Found out about the level playing field and the amazing work that they do and all the local m disability organises that are in every single club across the uk, how amazing they’ve been. And I just wanted to write something to not help them but something to go alongside them and hopefully, perhaps, you never know, we might be able to get a book in every one of the sensory rooms as well. So it’ll help other children understand about autism as well and spread our story across a different sort of field generation of people across the country, hopefully.
Liam: What experience do you have for going to football? with your daughter?
Jon: I’ve had a lot of experience myself, but with my daughter we’ve been to quite a few matches. We’ve been to a few Swansea matches because we’re local to Swansea and they have an amazing senry room. I was absolutely blown away when I first saw it. We’ve also been to chant them and Exeter as well. The guys that chant them. Again, blown away on how friendly they are, how helpful they are. They looked after us the entire match. Extra exactly the same looked after us the entire time we were there. Who’ve had such good feedback from the clubs. I just wanted write abook to sort of help other people understand that they can go to football matches as well.
Liam: Were you giveniving them advanced warning saying, hey, by the way, I’m coming. my daughter’s autistic. What kind of provisions do you provide?
Jon: Yeah, exactly that really. the Swansea lot. I asked if there was a century of. They said yes, they bookedit in for one of the games and they were incredibly helpful. Kai is also having a, she’s got a blue badge aswell. So they organised the parking for us. I’d like with Cheltenham and Exeter as well. I phoned, them up,emailed them quite a few times. They were very helpful getting us tickets and putting us into the right in touch with the right people. Ch them the guys there with is it the unite for access. They were at the front door and I for the cham game I went with my friend Chris, whose daughter is Martha. So we went as a foursome and everybody had such a fantastic time there.
Liam: Without giving kind of too much away, what kind of kind of sensory or emotional experiences do youexplore in the book and how do you hope it will resonate with autistic children and their family?
Jon: At the very beginning of the book, Lillian Miles and her dad organising the day out. her dad is giving her a list of things. What’s going to happen Making her aware of the noises that she might experience. Bythe time we get to the stadium there’s crowds, there’s this senury overloads the smells, the colours. At the beginning she seems fine and then when we get into the stadium and the crowd starts, then she becomes overloaded and then that, then the juorney just goes on from there. Then how she goes in, finds a senry room and then how she calms down, enjoys the rest of the game.
Liam: So when you’re researching this then are you reaching out to other families to see what their experiences have been, whereouts their child may have been overwhelmed?
Jon: Yes. Yeah. There’s a lot of people that I talk to through social media and through some of the groupsthat are local to Swansea. Their children are all autistic as well and then ah, ask them to, to get their views on their experience and also share them with the book as well and had them feed into the book as well.
Liam: So what have been some of the biggest barriers that’been explained to you or may be that you’ve,you’ve experienced going to not just football but like live sport in general. What kind of feedback do you get?
Jon: To be honest, in the UK it’s been absolutely amazing. The amount of feedback, the amount of people who are very positive, who were very helpful, it’s quite outstanding. And how amazing. Well, how I feel it the.I’m not sure how other people have found it but I’ve just found it very, very good in the uk And I say the UKbecause in November last year we went to America and I don’t sh the Americans out but they weren’t particularly great with being disability friendly. when I would approach them for different events that wewanted to go to. I didn’t actually get the feedback as I was imag, imagining that they would give us. So I was quite disappointed with the Americans. But the people in the uk, all the clubs that we’ve been to, the different
Jon: events we’ve been to, we, we tend to sort of go to the National Trust a lot, stay in the same sort of hotels and everyone has been outstanding to be honest.
Liam: I think for a lot of people who might be listening to this and thinking about going to the World Cup obviously next year in America, I think those words might give him a bit of a shudder.
Jon: Yeah, I think it’s definitely one of those places that needs to get involved a little bit more and perhaps, perhaps the World cup might be a place to push it it on a little bit more.
Liam: Perhaps we spoke about like campaigns like Unite for Access. I mean we’ve seen some amazing activities from clubs during that campaign. Unite for Access essentially runs quiet spaces, guided matchedday packs. How important is that kind of visibility for autistic fans and their families to see thatfootball is open for everyone, even if you, if you don’t think it is. Like two questions I suppose. How important are campaigns like Unite for Access? And the second one would be for anyone who’s listening to this, who may have an autistic child who is thinking about tending life support. What advice would you have for them?
Jon: How important? I think it’s very important that they’re carrying on doing their amazing job. it’s certainlymade our lives a lot easier. It’s one of those things that people say a lot easier but it has to be easier because of our daughter. For us to enjoy it and for our daughter to enjoy it, it needs to be easy, it needs to be easy to follow. Ah, we need to have those places in place for us to be able to experience. And once they’re there as they are now, it makes everyone else’s life a lot easier. I remember was the same question.
Liam: The second question was kind of what, what advice would you have for any families who are thinking about going to the live sport for the first time with an autistic child?
Jon: Don’t be afraid to just if you want to go there and your child wants to go there, go there. And like wementioned earlier, for a peace of mind, contact the club. They’re very, very approachable and they come back very quickly. they give you suggestions on how to meet your day a lot easier. You can ask, you can tell them what you need and they can, they can either offer these things for you such as a parking space or someone to meet or guidance or a map. A lot of these clubs also have online YouTube movies as well where they can actually show you in advance and where you need to go, who to ask what the room is going to be like when you get there, where the disability toilets are. so there’s a lot of sort of pre match research that you can do yourself but it’s there is readily available online and even through the Level Playing Field website there is certainly a lot of information there, a lot of it contact your email, a lot of website addresses that you can just browse and like what we do with Kai is when we go down to a football match we show her theYouTube video. She’s very interested in. She’s also interested in the food as well. She loves her food and it’ll give her a bit of knowledge on where she’s going to go and she’ll remember it when we get there. She’ll remember where we’re going to go. So she sometimes take lead, takes the lead and she can show us where we need to go. But yeah, there’s a lot of information online so don’t be afraid.
Liam: We’re recording a day after the women’s England team, have just successfully retained the Eurosand I apologise as a Welshman bring this up, but Lucy Bronz has spoken quite publicly about autism andhow it’s affected her and her family. how important do you think it is that people within sport actually, if theyare diagnosed, not be afraid to speak about it? Because I still feel like, particularly for athletes there’s still a taboo regarding having a disability of some sort. I still think society sees disability as less than rather than just they manage their lives differently. I mean for you as with an autistic child, I mean how important is it to see people in sport talk publicly about disability in general, but obviously autism in regards to this interview?
Jon: Yeah, I think it’s very important for them to speak out about it because I think it gives everyone else the confidence to also speak out about it as well. And don’t be afraid to go to football matches or even become afootball player or a sports personality. If you think that you’ve just got a, disability, it’s not going to hold you back. I think it certainly gives everyone the confidence to live their own lives and go down the path that theywant to go down and hopefully very soon is that I don’t think anyone’s going to have those issues about people having a disability if they go to join a football team or a scouts club or anything like that.
Liam: One of the things that might stop an autistic person from attending life sport is that it’s kind of misconceptions that are around a disability. As someone who has gone to football, someonewho’s gone to live sports, go out and kind of enjoy your life with your daughter and your family. What aresome of the misconceptions that people may have projected on you about your daughter?
Jon: I suppose one is that will she be able to do it? Will she able to? I mean people in sports are very win orientated aren’t they? And they think, oh well, if she’s got a disabilities she’s not going to bring the team’s success but, like you said, Lucy Bronze has proven completely different. She’s been absolutely fantastic and a huge success. There’s certainly a lot of misconceptions, but I think when I was a child, there are a lot more misconceptions with autism, m and other disabilities. I think that was a long time ago. I’m 52 now, so looking at the 80s thing, I don’t think that was any time happened until about probably the early 2000s. I think it all in the same sort ofthought. Weren’t we really, children with disabilities shouldn’t be included in sports and things like that. But now it seems to have certainly changed and the changes for the better. And I think it’s getting better now.
Liam: Your books are focused on, well, the mirroring Kaya’s experience when she was younger, you said now Kai’s kind of moving into her teenage years as someone who’s older, much older with autism now. and through, through the work that I do, I realise actually when we talk about autism, there’s still that perception of actually talking about autism with children. Don’t. Not really talking about autism with adults, adults with autism. Is that something that you do think about as my. Sorry. As Kai’s growing, growing older and how the view of her may change from, oh, a child with autism to, oh, now you’re an. An adult with autism and you may get treated or society may treat her differently.
Jon: Yes, yes, certainly. I’m 52, she’s 13, she’s a lot younger, but I’m a lot older than most parents with a child at age. I certainly worry about when she becomes an adult, what’s going to happen? like you said, there’s people. The spectrum of autism is, is huge. She has a lot of mental health. She basically. She won’t be able to live independently on her own. We will be looking after her all our lives and that is our huge concern iswhat will happen to Kaya when we die? where would she go? Who will look after. Will she get the right looking after? And I think that’s a lot. A lot of people I’ve spoken to, people like Anna Kennedy, she has two older sons. and that is her worry as well. And what will happen when we die? Who will look after them? and that is always on my mind and Ijust hope in years to come that we become, a better society as well.
Liam: I suppose a small part of that is sport. I mean, sport is that Unique thing where actually feel like you are amongst friends, you, you. So 40,000 people in the stadium, depending who you support, all cheering for the same thing even though you’re all different. Sexuality, race, religion, disability. Do you have the mindset that sport does have that power to kind of unify and make people feel welcome in a society whereout sometimes it is quite cold and cruel and can make you feel very unwelcome? Do you hope football can kind of be that silo for her as she grows older? And as she said, when you’re not around, that can be her family. That turns into being her kind of sanctuary, I suppose about putting too much emphasis on it.
Jon: No, no, I think you’re right. I thinke that is a fantastic idea. Ah, the guys at Swansea and Chantham, they seem to have a, ah, huge association, the disability association at the clubs. And I mean at the moment it’s fantastic. They are a family group and I think hopefully as we go on that group becomes more of a wider group including people are, who haven’t got a disability, who, who haven’t got autism and they become members of the associated group as well. So they then can be their family, like you said, that they can be there and look, not so much giving them the job to look after them, but to be there as friends.
Liam: Quickly shout out swansa. DSA do great work. at the Swans. And so I suppose my last question will be what do you hope people within sport take from the book? Because, what I’m thinking of is kind of the disabled liaison officers at the club stewards as well because they’re front facing very important to the matchday experience for any supporter base, but particularly any supporters who may have autism. What kind, what do you hope they take from the book?
Jon: I hope that they take out the book, that they learn about Lily and her autism. I think I mentioned beforeis that I had a, when I, I spoke at ay book festival about autism and people were there and they, they were all looking at me and I said, well what I’m about to say is not, I am not a doctor about autism. I, I know about my daughter’s autism and this is what I’m telling you about. I’m not telling you about autism as a whole. It’s just Lill or Kia’s autism. So I kind of hope that from the book that they learn about Lily and her autism. How sensory overloads can her affect her life, how there are ways to help her and to prove that even though thatyour child may have autism, there’s no stopping them from going out and enjoying the lives as everyone else does. And, that they can go to a football match and enjoy the football match. And there are people there that will support you and help you and make your day, a day that you’ll never, ever forget. And, basically that really just have a nice time at the football, and people will be there, and they will always be there to help you.
Liam: Jon, thank you so much for your time. And, I wish you all the best with the book. And, yeah, I hope it reaches the people it needs to reach, but thank you.
Jon: Thank you. Thank you very much for having me. Thank you.