Love Needs No Words: Fatherhood, Non-Speaking Communication and Finding Connection Beyond Language with James Hunt

James Hunt, founder of the Stories About Autism community and SAA Clothing, and author of Love Needs No Words, joins Dr Emma Offord for a tender conversation about fatherhood, communication and connection. James is dad to Jude, 18, and Tommy, 15, both autistic, non-speaking and living with global developmental delay. He shares how one Facebook post grew into a community of hundreds of thousands, and how his family have found ways to communicate without spoken words, from eyes and body language to AAC devices and, more recently, nightly text messages with Tommy. Together, James and Emma talk about Jude turning 18, the fear and hope of watching him grow more independent, living with the uncertainty of Tommy's tics, and the small sensory rituals that keep James grounded. Honest, warm and full of heart.

Follow James on Instagram @storiesaboutautism.

Find out more at divergentlife.co.uk.

This Voice Is Mine: The Unquiet Podcast.

Transcript

SPEAKER_04 0:11

Hi, this is Dr. Emma Offitt, host of This Voice is Mine, the Unquiet Podcast. For every neurodivergent mind that was masked, misread, or missed, where identity is reclaimed and the system gets named. This Voice is mine is a podcast for those who were told they were too much, too sensitive, too chaotic, too intense or not enough. Hosted by myself, Dr. Emma Offord, a clinical psychologist, neurodivergent woman, and unapologetic system disruptor. This podcast explores what happens when difference is pathologized and what becomes possible when we drop the shame, the script, and the medical model through stories, reflections, and conversations with people who were never meant to fit. This voice is mine reclaims the truth of neurodivergent minds, bodies and ways of being. This is not about fixing or fitting in. It's about remembering who we are and unlearning everything they got wrong. Today's guest is someone many of you may already know through his advocacy, writing, and the incredible community he has built around autism, family and belonging. James Hunt is the founder of SAA Clothing, creator of stories about autism, and author of Love Needs No Words. Through his work, James has created a space where many parents feel less alone and more understood, particularly families raising autistic children with significant support needs. James is dad to Jude and Tommy, who are both autistic, non-speaking, and have global developmental delay. Through sharing his family's journey, he has helped bring greater visibility, compassion, and understanding to lives that are so often misunderstood or reduced to deficit-based narratives. Today we're talking about fatherhood, hope, fear, joy, sensory world, and what love can teach when words are not the primary language of connection. James, welcome to the podcast.

SPEAKER_01 2:05

Thank you for having me.

SPEAKER_04 2:06

Thank you so much for making it here in the heat wave. It's a very hot day today. It's a really hot day to all your listeners. Our listeners, um, we sat here with a fan going, and I'm so grateful that you and Ruby managed to make it in today in this heat wave. So for the listeners who are not as familiar with your work, would you mind letting them know a little bit more about yourself?

SPEAKER_01 2:28

Yeah, sure. I mean I think you gave a pretty thorough and good uh introduction there. But yeah, I'm a dad of two boys. Uh Jude, who is just turned 18, which is very scary. Uh Tommy, who is 15. They're, like you said, both autistic, non-speaking, have sort of different ways of communicating with me. Uh, and for the last 10 plus years, I've been sharing our stories online, uh, initially as a way to help friends and family understand a bit more about autism, and it's grown into something a lot, a lot more. Uh, didn't realise there's so many families out there who that we live similar lives, that we have so much in common no matter where we are. And yeah, it's been being part of this online community has been so so helpful to me, and it's been great that our stories can help others too.

SPEAKER_04 3:19

Thank you for that. Um I know you've talked about how all of this has developed, but it'd be lovely to kind of have a like a like to hear that story again because certainly when I hear your story and reading your book, it seems like this just grew and grew and grew, um, but through connection, through community, and and it is incredible how many people have benefited and have felt seen and validated and heard through your story and your family's story. And you know, when I've listened to you on other podcasts, when I've talked to you, when I've been reading your book, that's not where you thought it was gonna go to begin with, was it? No, not at all. Tell us a little bit about that journey, please.

SPEAKER_01 4:04

Yeah, so I think it was twenty so 2015, uh, when Jude would have been uh seven, taught me four, and I found it really difficult to talk about autism. I found it really emotional, didn't know what to say. Uh we were starting to become quite isolated. Uh, Jude was really struggling when we went to public places. If we were to try and visit friends and family or go to a party or anything like that, it was just too much for him. And they're the moments that your friends and family get to know your children, and I felt like that wasn't the case. Not only were they not getting to know my boys at all, they also were not getting to understand what autism meant for them, what their learning disabilities meant for them. And I really didn't have the words to explain it when you catch up with someone at work, or when you go to the pub to watch a football match, and someone would say, How are the boys? Yeah, and in that moment, it's like there's so much to try and explain. Yeah, and I'd say, Yeah, they're fine, thanks, and how are you? and just kind of skirt over everything. When in reality we were dealing with a lot of challenges, and my boys were dealing with a lot of challenges, a lot of sleepless nights, a lot of uh worries about development for the future, and I realised that maybe if I couldn't say these things out loud, maybe I could write them down. And just for as I said, for friends and family, the idea was I I did a Facebook post and just explained a little bit about Jude and Tommy because I thought if they can read that in their own time, then hopefully our conversations will be a bit easier. And because back then I was still, you know, I mean I still learn every day now, but very new to it all, didn't really know much about autism other than Jude and Tommy. And it just gave me a bit of an outlet to to explain a few everyday stories of what we were up to, why Jude wasn't sleeping, or uh so many emotions I was feeling, or what how led communicate being seven and four and and having no words, and very quickly realized that people were interested and that people would share it with that it was back in the day where Facebook shares were the most important thing and or the way of more people finding you, and realized that people, my Facebook friends, could be a friend from school from 20 years before, who also knew someone who was a parent of an autistic child and would share it with them. And suddenly, you know, someone from Scotland would comment, and someone from America, and someone from like these strangers are are starting to read my my posts, and it just kind of grew organically from that. I realised that I was enjoying sharing, I was getting some benefit from it in saying the things that I couldn't say out loud, and realising that other people were connecting with it too, and yeah, that's that was all it was ever meant to be.

SPEAKER_04 7:22

Isn't that incredible? I I often think about how sometimes we can't always have the conversations we need to in our local life, yeah. And that's for all kinds of different reasons, and there there are sometimes people that we can have those conversations, but generally it is as you describe when people ask us casually how are we, we're not they're not asking, please stop for an hour and tell me your whole life. So, you know, and and navigating when is it appropriate to talk about this? Do they want to hear this? Or do I want to share this? I can imagine it's you know all of that. But then to start to get all you know from all corners of the of the of the earth that people contacting, what like what did that create for you? What you know, what was that like to have that?

SPEAKER_01 8:09

I think exactly what you said. Firstly, it helps you feel like you're not alone, um, which I know for many families in the early days you do feel very much like that. Um even you know, for some of us as the years go on still feel very alone and and that there's not anyone around us who who gets it, who understands. And I didn't realise how important that was. I feel like uh Tommy and Jew's mum Charlotte realised that very early on because and wanted those friendships and those and people to talk about it with, and I didn't. I just wanted to carry on with my friends talking about football and films and holidays and anything else but yeah the realities, and I'd really started to see that actually it's nice to have someone that you don't have to explain everything to who just gets it, and you can talk about the harder things, you can talk about uh the fears you have, you can talk about how exhausted you are or how stressed you are, and and having that like that I'd say in that first year made a good few friendships of people I still talk to now just by message and have never met them, and because they're you know miles and miles away, but who just realized in our lives that we had something in connection, yeah, and I think that is so important, and then as time went by as I started sharing more and more getting that feeling of seeing our stories helping other people that inspired me to to do more. I mean, I wouldn't have posted every day for years if it you know, if it wasn't for that, I'd probably still be posting just little updates about Jude and Tommy here and there. But now it's become realizing that almost a responsibility that people kind of rely on you and want to know about Jude, about Tommy, about me, and want to see the development, the progress, the highs, the lows, the you know that they it helps with their lives. So yeah, I keep sharing.

SPEAKER_04 10:22

And I'm so glad that you do, and I I think you're completely right about how much that can help because people will be dealing with professionals or so-called experts, and that can you know be very helpful for the conversations that you need to have with those people. But you know, what you all share are these developing stories, and people have got children that are growing up, and I'm sure they're watching, and um you know, just being able to see a family talk openly about the challenges, about the joys, about you know, all the human experiences of of what you're all go all going through when they probably don't have the local life where they can necessarily talk and share or find a community to feel less alone in.

SPEAKER_01 11:06

Yeah, I think that's one of the huge positives of the online world is that you can find no matter what it is that's going on in your life, there are people out there experiencing the same. And you can find that now, you can see, you can visually see what you know. I remember when Jude was very young and we were told there's a good chance he'll be non-verbal for the rest of his life. Yeah, and all that fear that brings, and trying to imagine, well, what's a 18-year-old non-verbal person like? What how are they living? How are they experiencing the world? And before social media, you'd never have no idea. You'd unless you happen to know someone in your local community, you would have no idea of who to talk to or who to look up to, or and that's I found out on social media before I started sharing. Um a few people who had kids four or five years older than Jude, and and just watching their experiences and you know feeling hope at certain points, feeling um I guess similar feelings of fear at certain points of things they talk about as well. But it's yeah, it it really makes such a difference. And I I see that now. Like I think what I've been sharing for so long, obviously there's some people who have been following from the beginning and and some who have found us much more recently. But I kind of felt like, oh, I wonder as the boys get older, will um will we still connect with the parents of the three-year-olds and the four-year-olds, and and actually really do? Like they do want to see an 18-year-old and imagine what life could be like, or see um how happy Jude and Tommy are at times and and try and put themselves in that uh position, and that I think is as I said the the beauty of social media. There's clearly some negative parts too, but you can really get that connection and see experiences of life that you wouldn't usually see.

SPEAKER_04 13:20

Yeah, and as a family, you're so generous about how what you share, like you really bring the camera into the home and and into the shop and and you know into everyday lives. And I think that's that's also what's so wonderful about what you've created is that people can really like feel part of that community. Yeah. And and that personal element, I think, makes people feel so much less alone as well, that they can relate or they can get ideas, they can get the hope, they they know someone's going through similar challenges, so they can feel connected. And when you are very isolated, that that's what keep can keep you going, isn't it? That's so necessary to face those challenges is to have that hope and connection.

SPEAKER_01 14:05

Yeah, it's been me sharing our story and me reading and watching other people's stories has been really important in spells where I've felt very isolated. Um I always try to be positive in what I share, but I'm very open and honest too. Like I'd never want it to sort of gloss over some of the harder stuff. I'd want to try and share it respectfully, but also be honest because if people don't hear about the harder things, how would they ever know? How would they ever um if that's you know, if I can bring some awareness to some of the meltdowns and the physical side of things or the the the worries that we have, then you know how will things ever change? How will how will we ever make progress? So on the flip side, as I said, when I've been there's been plenty of years where I've been isolated with in order to meet Tommy and Jude's needs, I've spent a lot of time at home and a lot of time just me and one of them who are non-speaking, and so there's not much conversation, uh there's not much um stimulation, I guess, on on my part, uh, where I'm trying to just meet their needs and and care for them. And at times I've reached out to people I've met online to discuss different things, or I've taken comfort from listening to podcasts, watching stories, uh that just yeah, that helped me feel okay. I'm alone in this moment right now, but I can also draw some strength from knowing that things can get better, that things can change, that things uh will change for for Tommy and Judan and for us.

SPEAKER_04 15:55

Yeah, yeah, no, I I feel the same. Um, like obviously I share, but um I I I also seek and and you know look to other people's stories and expertise and all kinds of different things, and I think what I see is so important is it's a grassroots perspective. So, like I said before, it's not only people who've been educated or work in a particular kind of service, it's people's lived experience, and I think that means so much to so many people. One thing that I was um thinking about when you were talking was you know, you kind of started off how you weren't talking about autism, you weren't talking about the boys particularly, and it was Charlotte who was maybe noticing things to begin with, and you've gone from not really talking about this you know family experience to now talking about it quite a lot online in podcasts. You've written a gorgeous book, and um, yeah, it's it's compassionate and you know it's it's authentic, it's raw, but it has this compassionate thread all the way through, and I think that's what what makes it just so beautiful. Um, but I love the story of communication, you know, that maybe Charlotte was going through processing all of this at a different pace, and maybe you were at a different pace, and you know, your your story is all about finding ways through communication and to communicate, and I just think that is so beautiful when people open their eyes to there is more to communication than verbal, you know, ways of communicating, it's you know, uh I think something for us all to learn, and that's what I think is so wonderful about your story. Um, tell me a little bit more about that journey through you know finding forms and ways to communicate with your boys.

SPEAKER_01 17:46

Yeah, um yeah, so even though Tommy and Jude are both autistic and both non-speaking, they both communicate in very different ways, and that has been a learning process in terms of what works for them, in terms of us being able to teach them and help them grow, in terms of us being able to understand them. And I'm hoping we've still got a long, long way to go and it's gonna keep improving and keep uh helping them become more independent and more able to communicate. But yeah, it's one of those things you I certainly did took completely for granted that my boys would speak when I was becoming a dad. I had no doubt in my mind that it never crossed my mind that my boys wouldn't wouldn't speak. And that was a bit of a rude awakening when so Jude was diagnosed at two, and he obviously wasn't talking by then. That's one of the reasons he you know that that helped us push for a diagnosis. And to hear that and be told that you you know your world comes crashing down. You you like like I said earlier, I couldn't imagine a world where he can't speak and what what that's gonna be like for him. So in those early years, you know, we tried different therapies, different uh approaches, and I think in the very early years with the hope of developing speech, and then as time went on and there's less progress with that, it becomes a realisation that you need to find other ways of just communicating, and ways that other people can understand, not just me and Charlotte can understand Jude and Tommy, other people need to be able to understand them too.

SPEAKER_02 19:37

Very true.

SPEAKER_01 19:38

Um, because a lot of for Jude, a lot of the way he communicates is our intuition and our us knowing him, and that's been really tricky to you really need to get to know Jude. So when he has new teachers, new people who work with him, it takes a good while for him to feel comfortable communicating because I guess in the beginning a lot of time they're getting it wrong, and Jude still one of the main ways he communicates is by taking your hand and leading you to to what it is, but we he also communicates massively through behaviour, through um becoming upset or angry or uh physical, and and that often we're left not knowing why. Whether that's is he in pain, is he is he hot, is he unwell, is he hungry, is he thirsty, is is it too loud, is it like all the different things you just question and go through your head, and often we've no we still have no idea why he's he's been upset, we just have to try and figure out how to help him be less upset, and that is a very different world. Yeah, it's a very different way of living, and I'd say Jude communicates massively through his body language, through his eyes, through his eyes. I can tell whether he's anxious, happy, sad, whether he's hungry, whether he like I can just tell by the way he's looking and the way he and that like I said, the difficulty with that is you have to really get to know him to feel that and to unfortunately we haven't had much progress in other forms of communication. Yeah, we'll use uh what we call objects of reference, where um I think one of the biggest challenges is Jude either doesn't like or doesn't necessarily understand a lot of spoken language, so it can be quite overwhelming and confusing for him.

SPEAKER_05 21:47

Yeah.

SPEAKER_01 21:47

So as much as we try and keep language quite simple around him and keep it to two or three word sentences, that can still at times be too much for him. So If we're going out in the car, um, I'll hold the car key up and say, like, Jude, time for the car. And so that is a visual reference for him for um so we use different things like that to to help him in his day, but a lot of the time it's it's guesswork. It's and we we just have to try and figure out what it is that that he might want in that moment.

SPEAKER_04 22:28

And does it did that come naturally to you now to because you you you would have to censor yourself, I would imagine, and get used to doing that, yeah, and still sometimes we get it wrong, just through your natural uh being human, being uh you know, we're not perfect, and you forget sometimes, or it happens a lot less now because we know uh, but yeah, I have to almost switch between Jude mode and Tommy mode, and know that okay, I'm with Jude now.

SPEAKER_01 23:01

This is how I need to behave, this is how I need to communicate, this is how I need to act. I'm with Tommy now, now I can do this and act act in a different way, and that yeah, I guess it's taking some getting used to, but we're like I said, he's 18 now, so I've spent a lot of time with him and and know his triggers, know what he enjoys, know how to try and help him, you know, make the most of every day, and and a lot of that is in preparation and being prepared for you know things laid out ready for to help him. And then we've got Tommy who is very different. He's I'd say he's much more I'd say typically able in the sense of education and learning, and he enjoys uh work at school. He m has a few spoken words or the start of spoken words. Yeah, he he struggles with putting multiple syllables together, so he'll say da instead of dad. Yeah, because he can't connect that. So he can say sort of the start of lots of words, but also he might say b, and you're like, Where's that ball, balloon? Like what what is it the biscuit? Like, what is the what is it in relation to, and obviously that can be frustrating for him because he knows what he's trying to say, and and we're not not getting it. Yeah, so for Tommy, we he's much more able to express himself, he's much more able to take on language. I can talk to him, and I know he fully understands everything I say. He might not want to act on what I'm saying, but he definitely takes it all in. And if I just have to give him time to process it, he uses uh what's called an AAC device, which is basically a communication app on his iPad, and it has words uh put out as tiles on his iPad that will have photos connected to it as well. So he can press those words and it will create a sentence, and you can press a button and it says it out loud. So often it will be around food, it'll be dad. I would like pink cake, and then I know exactly what he's after. Um, but that has he can type out words on there now, he can search through all the libraries and find the the right things. Sometimes it's still a struggle, but for him to either use it in the moment or to find the right word, but it's getting better and better, and that has changed his life really, and changed his since that has become such a mainstay of what he does, his frustration levels have dropped massively because he's being understood, yeah, and he's he knows he has a way of in those hard moments even saying yes or no or or explaining you know that he's hot or you know what the the problem is.

SPEAKER_04 26:09

People in I you can't I you can't even imagine what it might be like to not be able to say the most simplest thing of you know what you want to eat, what what you to ask for your needs to be met.

SPEAKER_01 26:22

Yeah, that's one thing I have realized I mean years ago is and I have a lot of admiration for Jude and Tommy and everyone like them that they get up every day and they go with you know, knowing that often people are gonna misunderstand them and not you know, whatever's going on in their head, they can't get it out, and how frustrating that must be. And they keep going. And generally, touch wood, Jude and Tommy are very happy and they enjoy life to the max, and to still be able to do that, knowing that there's that frustration there, and there's that um people aren't gonna understand what they want them to. That's yeah, I I find it incredible.

SPEAKER_04 27:06

It is incredible, it's such a taken-for-granted thing to most people, isn't it? Yeah to be able to ask somebody what they need or to be able to ask for what you need, so that is incredible. You were telling me earlier, um, well, we in your book you talk about um both your boys, but you're talking about Jude, uh, what it might be like for him to turn 18, and we know that he has turned 18 recently, hasn't he? And there's some changes in his life and all of your lives related to to Jude. Can you tell us a bit more about about that?

SPEAKER_01 27:37

Yeah, so Tommy and Jude's school, they have a small residential uh section in their school which is set up for to work on life skills to basically take what they're working on in in school and try it in a home environment as such. So whether that's around trying to help improve sleep at home or communication or um how to set a table, how to be in the kitchen, all of those kinds of things, and every term or every few months they take on five or six kids from school to stay temporarily. So Judah's been doing that the last I think six weeks. Uh so he goes to school on a Monday, comes home on a Friday, and it's just until the summer holidays, so about 11-12 weeks in total, and yeah, it's been a big, big shift. Yeah. Uh firstly, there's the guilt and fears that you have as a parent of like there was no way of us preparing Jude for it. That's what I was thinking. We couldn't talk to him about it, we couldn't. Um Jude isn't one for visual schedules, he isn't one for he's someone who's very much in the here and now. Like he, when it's school holidays, I don't think he knows every morning until he wakes up whether he's going to school or not. It's just in whatever happens in those first few moments is what shows him whether he's going to school or not. So that's always an adjustment for him. Weekends are an adjustment for him. So to suddenly be at school on a Monday and not come home, um, you know, we're petrified. Yeah. Luckily, the school are amazing. They've some of the staff staff he's worked with before. They did like a transition period of going into class and being with him. And he's because he's in technically the sixth form now, they're actually on literally on the same site, so they're like they can very much interlink during the day and use the areas, and so that was great. And it turns out Jude is pretty flexible. Um, if you meet Jude's needs, then Generally is happy. If you go all out to try and understand him to ensure he's got all the food that he wants, got his music, got his cartoons, got his, you know, he seems to be quite happy about that. Okay. And I mean he's he's settled in incredibly well. Uh this is a boy who for the first seven or eight years at school, school was a huge challenge. Um huge struggles around unpredictability and noise and other children. Uh even now being around toddlers, young kids, it sets him off, triggers him. Um so being in a special needs school with even though he's in a smaller classroom with six or seven other kids, it's loud and unpredictable. And so unfortunately, there'd be lots of meltdowns, lots of uh struggles. And in more recent years, as they've all gotten older, and he's maybe found more ways to cope and he's matured, and uh he started to really enjoy being around his peers, which you know again is is incredible to us. It's something that we thought may never happen. And now he's doing this little residential thing with four or five other um kids around his age, some a little bit younger, and he's sitting on the sofa with them and he's having dinner with them, and he's in these communal areas having fun. So it's it's been amazing. We're working on some really important things that hopefully will help him be more independent in the future, will help improve his life. Um, on the flip side, it's given me and Charlotte a little bit of respite as well, which we've never had, um, which brings up its its own emotions and and you know roller coaster of that that we go through. And yeah, generally it's it's going really well.

SPEAKER_04 32:08

That's great here. I've been watching it online, I've been seeing all these changes, seeing seeing Jude kind of go into supermarkets and different places, and yeah, I I can imagine that it's such mixed emotions. Yeah, like you you you want to see him smiling, and if he wants to be interacting in that way and going to new places, you want that. But I can imagine there would be a lot of fear, a lot of uncertainty for you as well as for him, and you know when things can go wrong, um then you know that's not gonna be pleasant for him or or for for you, and I guess yeah, and I think it's always you know it's always hard seeing your your child upset um at whatever age, and and especially when the meltdowns can be quite physical, either to himself or or towards me.

SPEAKER_01 32:59

And of course you worry that you have a meltdown out in a public place, it's it's a lot, it's trying to keep him safe, trying to keep yourself safe, trying to deal with everyone who's staring at you, and you know, all of those things, which is hard when your child is six, but when your child is 18 and as big as you and as strong as you, yeah, yeah, it has another challenge. So it puts that element of fear into going out and going to public places, but like you described there more recently, the last year or so, he's really stepped up into being able to experience that, and one of the main reasons for that is the relationship is developed with Ruby, who you're going to be talking to today as well. And so Ruby is um works with us at SAA Clothing. She has an autistic brother who's um a little bit older than her, but she's she's 21, so she's close in age to Jude, and I think Jude kind of sees kind of sees her as a friend, as a companion, and so they've been spending time, she can take him out and go to the beach and the restaurant and parks and take some of her friends with her, and he's he loves it, he's you know, which is natural, right? You've got an 18-year-old going out and spending time with other people their age, and yeah, but being able to let go and think like that it's all gonna work out, that he's gonna be okay, that he's you know, he's safe. Um, and also I'll be honest, a little bit of jealousy of that there's been plenty of times that we've never managed to do that, and yeah, I've lost I've lost out on a lot of those experiences with him, and he's obviously lost out on a lot of those experiences, and seeing him be able to do it either at school or with other people makes you feel a bit like, well, why not me? Yeah, and I know now part you know most 18-year-olds don't want to be with their parents. So is there an element of that? Is there an element of but but realizing that I wish we could have had more of that when he was younger or even now? And it's what like I I go out sometimes with Ruby and Jude, um, and it's been working, and that's great that that we can get to experience those things together. But yeah, sometimes you you think I wish it was this easy.

SPEAKER_04 35:26

Yeah, no, I completely understand that, and and I imagine you you still you know kind of keep the door open to those experiences, maybe you know, being something that you will be able to have with him.

SPEAKER_01 35:40

Yeah, of course. And and I think with Jude, I have had those experiences with him, but he seems to go through phases of um certainly has in the past, where if I think back to luckily during COVID times, we were able to go out a lot more and go to parks which were quiet and go to beaches and do those things of just me and him, and he loved it and he thrived on it. And I feel like actually we had a bit of a regression after that when the world did open up and suddenly it's loud and and stuff again, and maybe it was puberty and and different things kicking in too. But so we definitely have had periods where he's loved going out with me or with Charlotte, um, but also when life gets a bit tougher for him, it's us that gets shut down, and whereas and that's fine, and it's great that he's still happy to go to school and be at school, and like because he needs that, and but it feels like our world shrinks because it gets to the weekend and and going out is too tense and too anxious, but as I said, luckily with um with Ruby certainly, and with you know how things are going at school, he's been able to get out a lot more, and and I think it's one of those things the which I say to a lot of parents, the more happy experiences you have and they have, the more likely they are to have a happy experience again the next time. And I think that's certainly been true of of Jude and of Tommy.

SPEAKER_04 37:15

And in your book, you you talk really beautifully around their sensory experience and you know the importance of that, and again, just hearing you talk, you know, you you are describing environments that change on a sensory level. And I just I wonder, I'm so curious, like what like how is he able to be in some of these environments that will have sensory uncertainty, that will have some sensory discomfort, that something is perhaps like modulating that and allowing that to happen. Maybe it's his relationship with Ruby, maybe it's his age and his hormones, it can be so many different things, can't it? But I suppose what I'm trying to say is the importance of sensory, but we are dynamic, adaptable human beings wherever we are on a spectrum, and you know, things that we never thought could happen can happen for our children for ourselves, and you know, he's demonstrating that, isn't he, in ways that I don't think you ever imagined.

SPEAKER_01 38:12

No, he's certainly a lot of the things he's been doing recently are way above what we imagined. We when things have gone well before, we've managed to do river walks, we've managed to go to the park when it's quiet, we've managed to go to McDonald's, we've managed to do long drives. Yeah. Um go to a beach if it's empty, quiet. Uh now he's he's sitting in Toby Carvery and waiting for 40 minutes for the Carvery roast to turn up. Like he's I mean, last it started last year, but we've we've been going to um raves as little, especially for young adults with learning disabilities. Yeah, we're in a as much as Jude loves music, we're in a room of like 50, 80 other teens and young adults with pumping music and and he's enjoying it. Yeah. Where you'd think he'd take one step in that room and be like, no way. Um, I think you're different phases of life, different. I think definitely having certain people around him as like a support mechanism definitely helps. He's got been through phases of wearing ear defenders and not wearing ear defenders when he was young. Ear defenders became a real important thing for him, and then one day when he was about 11, he took them off and never put them back on again. Uh in the last year or so, he's taken to wearing wireless headphones with music. It's a little bit hit and miss. Some days he'll want them, some days again, which is fine. Uh, whereas Tommy, for instance, wears ear defenders everywhere he goes, um, wears them a lot of the day at school. Uh, wears them, takes them off the second he gets home, but he knows for him that when he's out and about, he he wants that because otherwise he is like like this, and he's walking around like this and he's trying to do things and he's balancing his ear whilst he's trying to so for him the ear defenders are essential. Uh and Tommy's much more Tommy goes out all the time to to farms, to uh fun days, to does so many different things and copes and enjoys it. And that's been probably the last seven or eight years of like I I guess he's always been easier than Jude to be out and enjoy things. Um he's just seemed to have a much more higher level either of understanding of like what's going on or understand of what's expected or realizing that when we go there he can do this and he can do that, and and there's I mean it's definitely been hard moments because where he's trying to meet his own sensory needs in places that you know when we go to the park and he's flicking sand everywhere and it's busy, and you know, we've definitely had plenty of moments like that, but generally he you know he wants to go out and he wants to experience the world, and at times it's felt like Jude hasn't. So, again, that's their contrast in personalities, but more recently, yeah, we're we're seeing that more of Jude, and it's been a really incredible development.

SPEAKER_04 41:35

Yeah, and you were you were also mentioning earlier that about the text messages with Tommy as well, and you've put some of those online and um and and something you said was that you were able to prepare Tommy for an event or an evening out, which is something that's you you can't do with Jude. Um what's that like to be able how how does that process work with with Tommy to prepare him?

SPEAKER_01 41:59

So it started so text messaging started in September last year. Um from his mum's phone, I received a message that said, Hi dad.

SPEAKER_04 42:13

Just spontaneously I had no idea it was coming.

SPEAKER_01 42:16

I was like, huh? What? And like literally type back Tommy question mark. Yeah, I don't know what's going on, and then uh that first conversation was you know a few lines back and forth, and it's become a a nightly routine now that before bed he will take his mum's phone and he'll text me. And we it's goes through a bit of a process of he loves to send a gift, yeah. He loves to send uh sometimes they're in relation to what he's feeling or what he's uh they're definitely all Disney based, but sometimes they're just his favourite ones that he he likes, yeah. And we have a bit of a conversation, it could be about his day, it could be about uh how he's feeling, it could be about what he did yesterday, uh how school was, and over the weeks and months of going through this every night that he's there, the conversations have just grown and and developed, and his his use of language has improved, his way of this, you know, I've found I've found out so much more about him in the last nine months. Oh, that's amazing, ever before, ever with the AAC device. It's like a completely different it's like the AAC device is just requests, yeah. But this is a conversation, yeah. And yeah, and I've never been able to ask him questions like this of other than yes or no questions. Um going back to when we were talking about communication, one of the ways we developed very early on for Tommy was a Thumbs up for yes or thumbs down for no or giving him two choices and holding up two hands. So do you want red or yellow? Yeah. And him to touch what hand it was because he understood that. And now we're able to have much deeper questions, much deeper conversations, and to the point of preparing him. Like Tommy Tommy thrives on routine and struggles massively with change. So it makes life happier day to day, but also makes life incredibly challenging at times when you have to try and break that routine or something goes wrong, or um, you know, there's a disruption. So the previous week he'd been out for dinner with Charlotte and her girls and her partner Carl, and it's just a little restaurant literally at the end of our road, and he'd gone and had pizza and sat in the restaurant lovely and enjoyed it. And we was talking about it on text. Uh and I was telling him how amazing it was, how well we'd done, and he said, Uh, I will take you. I was like, okay, like that's firstly like I'm I had to try and stop crying my eyes up, but also then like first I'm thinking, okay, well, like when? Because we're in such set routines, like when is he gonna let me try and take him? Like, when uh when are we gonna make this work? Um, so I was messaging him like, yeah, that's amazing, I can't wait. That's gonna be so and then so I decided that the best time to do it was Friday after school. Uh so on Thursday night he's with Charlotte and we were texting about it, and I thought, okay, even though I know he's gonna want to go, him processing that change, there's so many things he's agreed to and wanted to do, right? And then it gets to it and he can't. So I thought, okay, let's text about it on Thursday. Like tomorrow after school, you know, Daddy and told me to go to the restaurant, yeah. Um, and then he messaged back like, Yes, pizza, milkshake, chips. So um had a few more exchanges, and then on the Friday, when he came home from school, could see he was laughing and happy about it when I was telling him, but also anxious about it as well. And I could see that internal battle of yeah, I want to go, can I get out? Can I like put my shoes back on? Can I because unfortunately the restaurant didn't open till five and he gets home at four, so there's that hour of uh usually he would have had his dinner by then, you know, all of those different things. But we did it, and you know, he was it took a little while to get him ready, and but I could see that he wanted to go, and yeah, I think if we hadn't been able to text about it and prepare for it, it would have been a very different story. Yeah, but that could see that we've used it in a few scenarios now, and it it really, really helps.

SPEAKER_04 47:05

When you described getting that first message from him and not sort of Tommy question mark back, what was that like for you to receive that?

SPEAKER_01 47:15

Yeah, I I honestly couldn't believe like it hadn't crossed my mind that it was a way of communicating. We should be pushing for, I don't know why. We never almost feel stupid not having thought about it. But because he can read, I know he can read. We did lots of work going back to COVID again. With um, we kind of realized that writing was too difficult for him, he couldn't uh physically uh consistently uh do it. So during that lockdown when we were homeschooling, which was fun, we spent a lot of time with flashcards and my laptop and him copying, like typing out on the laptop cat and ball, and he really enjoyed it. And then obviously he's got his AAC device. We realized on there that he wasn't always using the symbols, he was typing the words out, so that skill was developing. And I guess just over time realizing that yeah, he can you know he's searching on YouTube, he's he's going on Google, he's doing things where he's typing. So um yeah, I think Tommy was looking at Charlotte's phone, and I think she just said, So should we text Daddy? I don't know what made her that do it that night. Or and he seemed to get it, he seemed to understand. Uh actually, I re rewind slightly. Uh earlier that year I went to Australia for uh to speak about autism, which again is crazy that as you said in that journey, but again, that was a huge change for Tommy. Me not being there disrupting his routines, and one of the ways we got around it was video messaging every day. Uh, me sending him a video, counting down the days of having a visual schedule of how long I'm away for, and I think he that helped him understand that in this app, like that is the other end of that, I can communicate with him. So I think that was almost like the precursor to it without realizing, and then yeah, he's he's understood that okay, now I can talk to him, and and now we're looking to try and expand that. He has independently a few times sent his care as a text uh without us knowing. So with his iPad, it's connected to my iMessage. And a couple of times I've had like a text message reply, and I'm like, huh, it's showing up on my phone as well. And I look and it's where Tom is using the iPad and has text them just saying like hi, or you know, just simple little messages. So we're really hopeful that it can grow into more and that uh he can understand that he can communicate with more people and can you know can text not just at night time but daytime and whenever you want to to communicate. So yeah, it's been incredible. And saying that I felt ridiculous that we hadn't tried it, one of the beautiful things that's come from sharing these posts about it is the amount of families who have messaged me saying we are now texting.

SPEAKER_05 50:30

Really?

SPEAKER_01 50:30

Yeah, who are saying, like, we are now you know you've inspired us to give it a go. Yeah, and now almost the same thing. Like, I can't believe we never tried this before. And be that uh I've spoken to a couple of families who whose kids can talk but who struggle with words at times, and who literally they'll sit on the sofa next to each other and text. And there's that example to the people to some kids who are completely non-speaking who are now able to to text back and forth, and it's yeah, that's again the beauty of social media to think that just us sharing that has inspired someone to give it a go. Yeah, and like the impact that could have is incredible.

SPEAKER_04 51:15

Absolutely, and you know, I was just thinking how how easy it can be judg to how easy it can be to judge a family who are sat texting, and actually that might be one of their only sources of communication, and you know, it's a develop developmental tool to help their child develop skills and and lessen the frustration of of you know not being able to verbally communicate. Um that is an incredible story, but I just love I just love that it was so kind of like such a surprise to you, and that he's it's it just really feels like he's really growing with it.

SPEAKER_01 51:46

Like I take you is what he said, and you know, it like Yeah, he's using words I never knew like first he were I thought he might understand them, but that just were never in his vocabulary. I never would have for him to put it in the right context, for him to like yeah, every message I can't wait for.

SPEAKER_04 52:05

Yeah, I bet, I bet. But there's so much in that, isn't it? You know, could be describing the restaurant, but then saying, basically, I'll take you, we'll we'll go together. In a few words, there's uh there's so much said there. Yeah. And and I can understand why that would make you.

SPEAKER_01 52:20

He always asks how I am. Like, how do you know to Yeah, like obviously that's quite a you know, we say that to people anyway, like day to day of just oh how are you? And but how does he know that?

SPEAKER_05 52:31

Yeah.

SPEAKER_01 52:32

Like how does or take for granted that he doesn't get that social cue and that yeah, that you know, because people probably don't say to him, Oh, hello Tom, how are you? Because they know he he can't communicate back. Yeah, but he's doing that, you know.

SPEAKER_04 52:46

And I imagine it unlocks so much for him that where it you know he might hit a wall and not be able to go past that, yeah. This starts to unlock all these different interactions that have to be.

SPEAKER_01 52:58

And some days we see different messages, some days he can talk about the you know, Tommy will never let us talk about the past in terms of you know, even if something happened an hour ago, I can't try and ask him, you know, why were you upset? How you feel you know, but we've been able to do a little bit of that by text. Some days our text messages have been very short, and he's clearly stressed or angry or like not in the mood, yeah. And again, that's fine, but it's also seeing that side of it and realising okay, today's different than yesterday was like uh 20 messages and today's four.

SPEAKER_04 53:36

Like what's you know, so there's a clue to something going on there, yeah. You were also saying, James, that you're you're going through some difficult times with with Tommy as well, and um you were really in enlightening me to you know what that might be like, where maybe the professionals don't have the answer right now, and you have to sit with that uncertainty. And um, yeah, I wondered if you wanted to share a little bit about what that was like for you all.

SPEAKER_01 54:03

Yeah, so Tommy received a Tourette's diagnosis back when he was about seven or eight, and to be honest, we over the last five or six years, we probably wondered if that diagnosis was wrong because the ticks was so under control and so uh infrequent that we thought, well maybe it you know, maybe it wasn't that, and maybe it it was just a phase, and maybe it I think one of the hard things when it comes to autism and other diagnoses like Tourette's is well is that is he stimming, is he choosing to do that, or is it a like a tick that he has no control of? And yeah, he received this diagnosis, it it's been completely I'd say almost forgotten about for years, and then probably about three months ago now, three or four months ago, he suddenly had this huge increase in like big uh physical ticks, uh head shakes, and throwing himself to the side, and and yeah, it happened for a few days, and you start to think, okay, well is he just having a bit of a surge of hormones? Is he you know is there something else? And yeah, we've been trying to get to the bottom of it ever since. And so far, all we've been left with is yes, this happens a lot during puberty. Uh that you can have this sudden increase and spike and and it usually settles down. Usually, yeah. Puberty as hormones become one, you know, and definitely we saw with Jude, you know, different behaviours and stuff during puberty and and when things become quite intense. But yeah, at the moment we're left with there's no real answer, and we're waiting for another appointment, um, which I think is gonna be in about three weeks now. But yeah, these ticks are quite debilitating to his day, and his way of communicating, his way of being able to do work at school, to focus, to you know, he is doing something, and suddenly he's flicking his head up, and and he has said by message that you know his neck and head hurt, and that you know broke my heart. That with you know, it's great that we've been able to talk about it and try and reassure him that it's gonna be okay, and and it but also yeah, I just I can't get my head around what he must be thinking every day. Like, why am I suddenly doing this? Why am I uh why is this happening? And you know, he's he's great in the sense of how he copes with it, and he's not uh ashamed of it in any way. He's not you know, we make sure that that's you know, we never draw any attention to it, we know just let him do what he needs to do. But yeah, it's awful just sitting waiting, and this happened before with Jude, and we had a real period of of aggression and and just almost like a well it's that age, and okay, what does that mean? A week, a month, six months, like yeah, what are we what are we waiting on here? And yeah, it it's it's the hardest, you know, we've we've been through so many hard moments over the 18 years of meltdowns and behaviours and and aggression and and seeing your child in distress and and so unhappy. And then yeah, this is just like another added thing at the moment that because he is doing so well and so many like but it is affecting him, it is affecting him going out. It is like whether that's because he is a bit conscious of it or whether he's more anxious because of the ticks or because of puberty or whatever it is, but he's not as relaxed as he was when he was out. He's not as and that yeah, I just wish there was a way of getting to the bottom of it, and and you know, all you ever want to do as a parent is fix things and make things better.

SPEAKER_04 58:22

Of course you do.

SPEAKER_01 58:24

It's hard when it's out of your control.

SPEAKER_04 58:26

Yeah, no, I completely relate to that, and um and I was thinking about how for Tommy uncertainty is hard, and you know, when I've seen some of the images of um him experiencing ticks and just knowing about that myself, they they can they're uncertain when they're coming, how they're gonna take shape, when they're gonna stop, and also the uncertainty of not knowing why they've shown up. I mean, you're all holding a lot of uncertainty. Um and and and you know, you're still carrying on with life in the way that you do, but that doesn't mean it doesn't impact you, or that you're not having to face that on a daily basis, or lie awake at night worrying about that, or however it affects you. It's a big deal, isn't it? To to go through something like that.

SPEAKER_01 59:13

It is, and some days it's more intense than others, some days it but you're right. You I just look at how much it impacts him when he's trying to do something, and it just yeah, it's you can see like he's trying to focus on something, then he's throwing himself to the side, then he's like at 20 seconds go by, then he's back trying to do it again, you know.

SPEAKER_04 59:35

It just seems so unfair, yeah.

SPEAKER_01 59:36

Exactly.

SPEAKER_04 59:37

Yeah, must be a really hard thing for him to go through. I love hearing that he was able to say something about that though, about how he was his body was hurting, and you know, maybe beyond before September he wouldn't have been able to do that in that way. So there's something there, isn't it there for him?

SPEAKER_01 59:55

I think he I don't know how much he understands of it, but he yeah, he I think what was it he called it on the text? His tick monster.

SPEAKER_04 1:00:06

Oh, dude, and did he make that name up?

SPEAKER_01 1:00:08

I I don't know whether Charlotte had been joking with him about it, like trying to, you know, yeah, um, but it's certainly tick monster. That's what he refers to it as. Um yeah, but and jokingly, like he knows it's uh but yeah, it as I said, you just wish you could, you know, click your fingers or the the challenge that we have with Tommy, especially health-wise, is because of his sensory needs, because of uh how autism impacts him, he it's really hard to get any medication done in. It's really hard to uh work on his diet, it's really hard to so when he's um you know, if he's unwell, uh getting any kind of pain relief or anything like that, he's yeah, he just will not take it. If he can if he can taste it, if he can, you know, unless we can mask it really well, he just won't have it. No matter how much we explain to him that it's gonna help him. And I've tried that by text as well when he had a temperature and sore throat, and he promised to try and he just wouldn't take it.

SPEAKER_04 1:01:17

Yeah, he just his body couldn't, yeah.

SPEAKER_01 1:01:19

Yeah, so that's the other side of it, is even if there is a you know, we speak to the pediatrician, they go, actually, we need to change his meds, and he does this. It's not necessarily that simple. No, that it's gonna make or that he'll be able to take it to even know if it makes a difference.

SPEAKER_04 1:01:34

Yeah, yeah, that's incredibly hard, isn't it? And and it's people might think it's easy to disguise medication, but if you're sensory sensitive, no, you can pick it up, you can pick it up, you can smell it, you can even see the expression of people's face.

SPEAKER_01 1:01:49

We like with crushed tablets to put into like milkshakes, and you know, his diet's already quite limited anyway. But also, even if he we manage to get those tablets in a milkshake, he's not gonna have four milkshakes a day to bring the temperature down, he's not gonna, you know, it's we might get one, yeah, and then he might not have it tomorrow. Uh so yeah, it's getting the consistent, which obviously freaks us out every time he's unwell because we just you know he really suffers because luckily touch wood he's not had anything too serious, but just having a high temperature, having the flu, that kind of stuff, we just can't get any relief from him.

SPEAKER_04 1:02:30

No, that's a real worry, James. It's been lovely speaking with you. We're almost at the end of our conversation. I asked each guest to bring in an object. I did. Yeah, um, so I wondered. Did you bring something in? Yeah, yes, please. So this idea was about kind of just showing people another part of us, maybe something that we use to outground us or something that holds meaning for us. Um, so I'm excited to see.

SPEAKER_01 1:03:00

So mine was a simple stress ball. Um Tommy loves fidget toys, yeah. Uh things to squeeze, flick, flap. Yeah, and I realised in getting more for him how much I mean, do you remember when stress balls first came out? Yeah, like in a office or they'd have the logos on. Yeah. So I remember like 20 years ago or whatever it was, like first being in office and being like, oh, what's that? And you know, and then suddenly be sitting there doing my work and realizing that I'm you know, one all the time. And kind of forgot about it, and then having all these sensory toys in the house all the time, realised that I actually I quite like a stress ball. I quite like a and often when I'm sitting at my desk and doing a Zoom call, doing a podcast like virtually, yeah, I'll sit there with this below desk, and like that's become my go-to like stress reliever, or even just you know, not I will particularly feel anxious or that, but just yeah, it just helps keep me focused. Um a lot of the time when I've sitting editing the book or writing the book like in between, I'd have that at my desk, like scrolling on the laptop, reading back through it just as a yeah. So that was my little I love it.

SPEAKER_04 1:04:22

Yeah, they're they're very satisfying. And I think people don't realise everybody has a sensory world, yeah. So we will all have sensory needs and we can benefit from you know, some like you wouldn't necessarily say that's an accommodation, but you you know, you could say that's that's a stress relief, that is something that helps to keep you regulated.

SPEAKER_01 1:04:40

And I realise now as well that again it's this has been a recent thing, is that I think I sit with a blanket. Yeah, yeah. And I never used to. I don't know why, but I think with again with Tommy having them, with the they're just about, and I think one day I put them over and I was like, actually, it's quite nice. Um so yeah, that's my go-to. You know, at the end of the night, I've got my feet up on the sofa and blanket on, and that's you know, meeting a sensory need without even realising, I guess.

SPEAKER_04 1:05:09

Totally. I have this story when I was younger, always didn't want double deckers, even though I generally like them because they had surprise raisins in. So it's the sensory feeling of raisins on my teeth. And I thought, like, even at this really young age of about three or four, I was saying, I I don't like surprise raisins. Yeah, I think when we open ourselves up to the sensory world, we can see it all around us and what we gravitate to and what helps us. And like you say, sometimes we don't even know that we are benefiting.

SPEAKER_01 1:05:36

I definitely never thought about it before Tommy and Jude. I never thought about how any sensory impacts on myself, like noise, lights, like never, and I think actually, and I've spoken to a lot of parents about this. How I don't know whether it's we become more in tune with ourselves or we spend so much time worrying about them on behalf of Tommy and Jude that now I'm conscious of it, like I'm conscious of a busy, noisy place. But I don't know if it's because I've been on edge so often on behalf of Jude or Tommy when we're together, yeah. That now when I'm in that environment, my senses automatically go up. Yeah. And I'm like, oh actually, no, I'm okay. I can I'm okay here. It's it's that worry of constant worry of how things might impact Jude or Tommy, make me feel like it could impact me as well.

SPEAKER_04 1:06:28

Because being hyper-vigilant on behalf of your child will affect your nervous system, which will make you know feel like more of a sensory assault, or it can be how you're sort of born in a combination of the two. So yeah, it's a hard question to answer. I mean, I have the same experience of having learned so much and worked so much around sensory, it's always in my awareness. But then I go back to my story and think, well, you did say surprise raisins, and you had a lot of other quirks around sensory things, so I think it's a bit of both humour. But um, it's a fascinating area, and I think it it's something that is so helpful to so many people. So I'm glad you're talking about it, and and it's a fantastic chapter. I just loved it. I loved all your book, but in particular, I just love that one as well because uh I'm so passionate about sensory stuff. James, it's been an absolute pleasure to have you here. Thank you for making your way here in the heat wave, and um, I hope you come back one day.

SPEAKER_01 1:07:20

Yeah, lovely. Thank you for having me.