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SEND Parenting Podcast
Welcome to the Send Parenting Podcast. I'm your neurodiverse host, Dr Olivia Kessel, and, more importantly, I am a mother to my wonderfully neurodivergent daughter, Alexandra, who really inspired this podcast.
As a veteran in navigating the world of neurodiversity, I have uncovered a wealth of misinformation, alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks.
Each week on this podcast, I will be bringing the experts to your ears to empower you on your parenting crusade.
SEND Parenting Podcast
When your child slips away with Guy Shahar of Transformative Autism
What happens when the child you thought you knew begins to slip away? For Guy Shahar, watching his one-year-old son Daniel lose words, self-feeding abilities, and connection was heartbreaking. "It's like you're losing your child," Guy shares, describing the helplessness that washed over him and his wife as traditional medical pathways offered little beyond frustration and dismissal.
Their story takes an unexpected turn when they follow their intuition to a small therapy center in Israel, emptying their savings on what Guy calls "stronger than a whim, but without any rational basis." What follows is nothing short of remarkable - a transformation that begins on the very first day when Daniel, who hadn't touched solid food in over a year, sits calmly at a table feeding himself. The magic, Guy explains, isn't in mysterious techniques but in learning profound attunement and containment - creating safety while truly seeing and responding to what his son actually needed rather than what conventional parenting expected.
Guy's journey doesn't end with Daniel's progress. While establishing the charity Transforming Autism, he discovers his own neurodivergence, adding layers of insight to his understanding: "Autistic children are often particularly sensitive and empathic - turbocharged even. It's overwhelming, that's why they shut down." This revelation reshapes his advocacy work, focusing on helping parents understand their children's extraordinary potential from the earliest moments. Through intensive home-based therapies and accessible online parent groups, his charity now guides families toward the confidence to parent neurodivergent children on their own terms.
For parents just beginning this journey, Guy offers compassionate wisdom: allow yourself to grieve the future you imagined, seek community with those who understand, and remember that while the path may not resemble what you expected, the connection waiting on the other side can be more profound than you ever thought possible. Connect with the Send Parenting WhatsApp community through the link in our show notes, where you'll find others walking similar paths with open hearts and shared understanding.
Click here for Transforming Autsim
Click here for Guy's book Transforming Autism
Click here to join the private SEND Parenting WhatsApp Community
www.sendparenting.com
Welcome to the Send Parenting Podcast. I'm your neurodiverse host, dr Olivia Kessel, and, more importantly, I'm mother to my wonderfully neurodivergent daughter, alexandra, who really inspired this podcast. As a veteran in navigating the world of neurodiversity in a UK education system, I've uncovered a wealth of misinformation, alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks. Each week on this podcast, I will be bringing the experts to your ears to empower you on your parenting crusade. If you're looking for a safe space to connect with other parents navigating their neurodiverse journey, our private WhatsApp community offers support, insights and real conversations with like-minded parents who truly understand. Join the conversation today. You can find the link in the show notes.
Speaker 1:In this episode, I am going to be joined by Guy Shahar, co-founder of Transforming Autism and author of Transforming Autism. Guy's journey began, as so many of ours do, with love and worry of his young son, daniel. What followed was a search for answers and a transformative experience at the Minz Center in Israel and ultimately, a deeper understanding not only of his son but of himself. In this conversation, guy will share how discovering his own autism later in life reshaped everything he thought he knew and how this realization led to a powerful vision to help other families see the extraordinary potential in their children from the very start. We'll talk about the charity that he co-founded and how it supports parents from the earliest moments of concern through to essential insights that Guy wants every parent to know.
Speaker 1:This is a story about connection, transformation and hope, even in the moments that feel most uncertain. Let's begin so. Welcome, guy. It is an absolute pleasure to have you on the Send Parenting podcast today to share your deeply personal journey with autism that began with your son but has also been part of your journey as well in life, and how you've had some really transformative breakthroughs that have led you to writing a book, co-founding a charity, and your passion to share those insights is exactly what my listeners want to hear, because you're further along in the journey. You've lived this and a lot of my listeners have children who have autism or suspect they have autism, so I know that they're going to be really super excited to hear your story. Can we start off, potentially, with just, you know, sharing your son's journey, daniel, and how you? You know what were your early experiences and how was that for you.
Speaker 2:So the first experiences that led us to think there was something that needed investigating were probably just after he was one year old and he started to lose a lot of the abilities, a lot of the development that he'd had in his first year. So he stopped being able to. He started to say words. He lost all of those words. He'd started to sit and feed himself solid food. He lost the ability to do that. So, you know, within a few months we were just having to sort of spoon feed him pureed food all the time, and only when he was watching cartoons on the television because he wouldn't take it any other time. Most distressingly, he started to disconnect from us and he started to. You know, like, by the time he was one and a half, he just never made eye contact with us, maybe a quarter of a second, and you could tell he just really didn't want to. Uh, he just wanted to be alone all of the time.
Speaker 2:It started, you know, for some reason I was his favorite, so I was the last person to notice this. But my wife was telling me that, like, like, when you're not here he's just totally disconnected. But when I was there, he lives. But after some time it was even when I was there as well. It was just he was just really not present at all for us, and that must have been heartbreaking. No, it really was. It's like you're. You know you're losing your child, you're losing your son and you don't. You don't know why, you don't know what's happening, you're just worried. What? What's it going to mean for the future? There's all of of these questions about where it's going to go.
Speaker 1:And he got rid of it. Sorry, did you have any idea of what it could be at that point? Or did you go to the GP, or were you worrying?
Speaker 2:alone, together, well, with our wider family. Yes, and it was actually my mom who thought it might be autism. So then we were able to give the health people a bit of a steer and you know, they started to investigate it, um, and it was a little while, but it was eventually confirmed as autism did you struggle to get, uh, the, the, the diagnosis?
Speaker 2:yes, for a while. Uh, you know, we it was we were just sent backwards and forwards for different sorts of tests. They thought about six different times. It might be his vision or his hearing, and that's why he wasn't responding and we had had to do a test. And then we went to another doctor and they said, oh, go and do another test. Well, we've done three of these already. Oh yeah, but go and do another one just to be sure.
Speaker 2:And so it was just like fighting against the intransigence and the and the really unwillingness I don't know if it's unwillingness or they didn't have the resources or what the reason was to progress it. Eventually we decided we looked at the experiences that other people were having of really sort of pushing for a diagnosis and it was backed up by our experiences as well. And you know, really sort of having it's almost like sort of carrying a sack of rocks at Mount Everest or something like that, just to get a step forward. And at the beginning we thought, well, it's worth it. It's worth it because at the end of it they'll know what the issue is, they'll know how to help us, we'll really get the support that we needed. But we looked at other people's experiences of putting all that energy, all of that emotional strength that they had being depleted, on managing people who, in theory, were there to help, were there to sort of help diagnose, were there to help, spending all of that, getting to the end of the process and finding that all they get is a sheet of paper pointing them to local charities or support groups and that's it it. There isn't any meaningful support that that's widely available.
Speaker 2:So we decided to opt out and we had some really traumatic experiences with doctors, like there was I mean, you might have seen it in the book there's one uh doctor, one specialist we went to who really was patronizing to us. Um, because you know she was really manhandling daniel, who was really sort of sensitive to that sort of thing, and he was, and she was waking him up when he was sleeping and she's going look, I'm a doctor, I'm a specialist, I've been doing this for years. I know exactly how to handle children. She started handling him. She clearly had no idea what he was doing. She was doing um and um.
Speaker 2:In the end she gave up. She looked really startled and disoriented and in the report, when it came through, she wrote we weren't able to continue the examination because of lack of cooperation from the child and it. You know, that was almost like the final straw. It's like this is this is not working for us, we're not going to get, we're not getting anything any help getting through to a diagnosis. It's unlikely that we're going to get anything meaningful when we get through and we get the diagnosis. So we really took ourselves out. I mean, in a sense it was a good thing apart from the trauma that all around that, of course, to all three of us um, because it it prompted us to take a different path and a different perspective and a different, you know, a different route, and the diagnosis came in the end anyway, it came much more easily when we gave up on it. Actually, I don't know how that works.
Speaker 1:You know, your story is not unsimilar to other parents that I've heard, because and it's so sad to me as a doctor that these systems have failed parents and failed to understand what your son needed. I mean, basically, she was traumatizing your son. That story is saying, you know, he's incredibly uncomfortable with enforcing him too. So my heart goes out to you and your wife and your child, because it just shouldn't be that way. But I like the fact that you said there's a and I believe this too, I'm an eternal optimist that there's a silver lining to every cloud and everything that we have to go through, and I think that's what you're talking about. Is that transformative other journey that you took and I might be pronouncing this wrong? Is it the MIMF Center?
Speaker 2:in Israel.
Speaker 1:MIFNI, mifni. No, so I was pronouncing it totally wrong. Okay, was that the first step on the journey, or was there others? So your first step was we're not going to deal with the traditional way, that we're going to get an autistic diagnosis and we're going to go look elsewhere. Tell me what you decided to do then. That's a very big, bold, scary step.
Speaker 2:Well, we started doing the little stuff that was available locally. So we did music therapy, we did cranio osteopathy, which I still love.
Speaker 2:I didn't know anything about it before that moment, but it's just I love it. Um, and so we did a lot of that. Um, uh, we did little local things, but we were looking for something bigger. We were looking for a bigger, um you know, uh program or something that was going to help him. We looked, looked at various things online. Most of them didn't feel right. You know, we were sort of attracted to this thing that's quite popular called the Sunrise Program.
Speaker 1:Okay, can you describe that?
Speaker 2:Not in any detail because we never followed it up, but it was like you know you go, you have to go to America, you have to like sort of learn. But it seemed like it was a sort of classroom-based thing, um, and I know with stuff like that that everything can make perfect sense in the classroom and then you get home full of confidence and optimism and then the world doesn't work out how, how you expect it to or how you've been told it should manual doesn't work, yeah yeah, and if it's not in the manual, you know there's no, there's no fallback.
Speaker 2:So we decided not to go for that and in the end, we found something. Uh, just as a um. It was in a passing reference of a pair. We only bought one parenting book when he was born and it was in that book and it was just a passing mention of this mifny center that's had excellent results with, uh, very young children you know, up to, you know, up to the age of two. They work with um, and so we went on their website. But this was like 2011 websites, you know, we're not, you know, most a lot of places didn't even have websites and those that it just didn't say anything. But there was something.
Speaker 2:Me and my wife, we both sort of felt okay, we think this is the one. We don't know why, got no reason to think it is um. But we both sort of felt OK, we think this is the one and we don't know why, we've got no reason to think it is. But we both had this intuition that it was the right thing. So we did a bit more research.
Speaker 2:We went on Facebook. We found other families who'd been there. We connected with one or two of them. We talked to them about their experiences. And then we called that centre and we talked to them and we decided to go ahead with it and it was a three week very, very intensive program in a small village in the north of Israel. And, yeah, and it wasn't cheap either by any by any means, and it sort of really wiped us out financially and it was a stronger than a whim, but on an intuition, without any sort of evidence or rational basis for thinking that this is worth putting all our money into. But everything we could scrabble together from our parents, from ourselves, we spent and we went there.
Speaker 1:Your gut instinct, though, is an amazingly reliable tool if you listen to it, and it sounds like you didn't just go like flying off in the dark. You reached out to other parents, which they must have. It must have connected you to that. Their children were like your children your child, excuse me and um, but still very brave and very expensive, it sounds like, but it also sounds like you were.
Speaker 2:Guys were completely alone, trying to figure out how to help your son, and I know, as a parent, you'll do anything to try and help your child, so um, so you all board the flight, because if we'd done this and it hadn't worked out, that was it. We were white, we had nothing. You know it was, it was all in, it was like this all or nothing, uh, and then nothing was really unthinkable.
Speaker 1:And your son came with you as well.
Speaker 2:Oh, yeah, yeah, yeah, absolutely, it was critical.
Speaker 1:Yeah, so it wasn't just in the classroom, manual learning, it was all three of you together.
Speaker 2:We didn't want that. We knew that wasn't right. So this is a sort of family therapy. So we're there, both learning to do what we, you know, both learning from them to be therapists for him as parents, but also being part of the therapy as a family. You know they look at the whole family unit and work with us together. So it's like three weeks, it's very intensive and it's the whole clinic, the whole staff of the clinic, working on one family at a time. That's why it's so expensive.
Speaker 1:So there aren't other children, there are other families. It's just you, your family. Wow, for the full three weeks. Yeah. What were some of the key elements of their approach?
Speaker 2:So, uh, play was, uh, you know, and looking at it from the outside it probably just looked like you know you're just playing with a child. It didn't look anything impressive at all, but it's played based on a real, um, deep understanding of what the child needs at any moment to feel safe, and of developing an ability to sort of tune in to the child, to tune into the child's signals, to their needs, to what they're expressing. Um, as it happens, you know, in real time, and that just sounds like common sense, but it wasn't what we were doing before and it's not what you know in real time and that just sounds like common sense, but it wasn't what we were doing before and it's not what you know. It sounds like it's what families just generally do, but it is actually isn't.
Speaker 2:We come at things from a prism of what our fears are or what our expectations are or what our understanding of how things should be are, and we bring all of that into our lives and what we were learning there was to really strip that away and tune into them in this moment, both into what they're need, both as in sort of making that connection with them so that we're in tune with what they want and that we have an understanding of what they need in order to be able to to to feel safe, in order to be able to feel safe, to feel contained, to feel that they can trust us actually, that what they're going to get back from us is something that's affirming, as far as they understand what affirming is, rather than what we think they would.
Speaker 2:An example is you see, very often and Daniel was really unhappy about this when this happened when people came and talked to him for the first time, they say, oh, child, children like excitement, so they'd like throw him up and sort of talk to him in a big, loud, excited voice, and it was horrifying for him. But that was their understanding of what children enjoy. It's not what he enjoyed. So what we were learning was how to tune in to what he enjoys, what he needs and what, what he's sensitive to, and what he needs and what he doesn't.
Speaker 1:And making him feel safe, you know and secure.
Speaker 2:Making him feel like invited to be a part of our family, to play with us, to just yeah, to just be in a healthy, nourishing relationship with us.
Speaker 1:And was Daniel non-verbal at that point? Was he under two?
Speaker 2:He was nonverbal. Yeah, he was just over two when we went there. They're a bit more lenient at that time with their age limit, but yeah, he was just over two and he had been a little bit verbal. But he'd lost that being verbal around the age of one.
Speaker 1:And after the three-week period and you went home, I imagine that you've had such an intensive training during that period that you're going to continue doing all of those things that you've learned there. So what lasting impact did you see in Daniel, or was it a gradual change that as you kept working with him over the years? Can you describe how it went forward after that three week period?
Speaker 2:Yeah well, it was both a radical, immediate change and a gradual change as well. So, you know, it's almost like on the first day. Somehow they had him sitting at the table and eating solid food, feeding himself, solid food which we hadn't seen for like over a year. How, I still don't know. I was there and I saw it and it's like we were both going. How is that possible? How did how did that happen? Sounds like a miracle, almost, doesn't it? You know he was.
Speaker 2:So he was, he had a meltdown. You know, he was really attached to his push chair and he had. We were allowed to take it through the airport, but he had to give it up when we went on the plane and he was absolutely distraught by that and he was melting down on the plane. They were talking of throwing us off. Fortunately, he cried himself to sleep and they let him, they let us stay on, but it was touch and go there, um, and it was just such an exhausting and difficult situation. Coming back, we went into the airport. He, uh, happily stood up from his pushchair, gave it to the staff, he took us you know, me in one hand, my wife in the other hand and we walked onto the plane as a happy family. He was smiling proudly. It was such a transformation. It just wasn't imaginable before.
Speaker 1:Gay, isn't it? Yeah, so was there, and this is just through the play therapy, or was there other stuff going on?
Speaker 2:Well, yeah, it was it was through play therapy, but through that play therapy we were learning to, to connect with him, to tune into him and through that and they were doing that, of course, as well, to model it to us and through that he was feeling safer and he was feeling. It doesn't take long for the for the opening to start. You know, starting on the first day, you know the first signs of it. Sustaining it is the difficult part, sustaining it takes the work because it involves not only changing what we do, it involves changing how we think and in a sense I don't want it to sound overwhelming but also how we feel, because it's If we're feeling stressed, if we're feeling anxious, if we're feeling panicked, he's picking up on that, he's absorbing those emotions, he's imbibing them. And you know, I feel that autistic children are often particularly sensitive and particularly empathic, despite the reputation that they have for not having capacity for empathy. I think the empathy is turbocharged with a lot of autistic children and it's just too much and that's why it's overwhelming.
Speaker 1:It's overwhelming.
Speaker 2:That's why they closed it down on the surface, but it's still going on underneath, um. So it's about retraining ourselves to think in a different way, to be and to live in a different way. It's better for us also, but it gives him that safer environment where the you know know the emotional energy around him isn't going to be sort of depleting him as it was before.
Speaker 1:That's a lot of hard work for you and your wife as well, and a lot of transformation.
Speaker 2:It's like you know you, you say you like, you like to frame things in a positive way. It is a lot of work, but it's also an enforced course in personal development that you would never have voluntarily signed up to, and so you actually end up as a much more balanced person and a much stronger, much more resilient person. You know, you end up doing the work that you wouldn't otherwise have done for yourself, and then you kick yourself for not having done it otherwise have done for yourself, and then you kick yourself for not having done it.
Speaker 1:You know, it's so true. I think my daughter has taught me more than I was ever able to learn by myself by my desire to help her and what she needed, you know, and I'm a better person at the end of the day. Still not perfect, but I've improved a lot with her.
Speaker 1:And then you know, as you've progressed with Daniel, what were the kind of low, long burning or slower changes, and did you keep checking in with the center to make sure that you were still on track? Or they gave you everything that you needed and, as you have gone forward, that was all you needed to keep going.
Speaker 2:No, they did. They did give us a lot of ongoing support for a while, you know, more intensively at the beginning, and it tapered down. But even like a couple of years later, if anything happened, if anything came up, they were, you know, they were there and they sort of supported us and they were ready to help us. That's good, yeah. What were the slower things? Nothing really felt slow because it was all moving in the right direction. So, yeah, daniel wasn't um, uh, you know you, you you would still tell a difference, uh, with him, but he was, you know, most importantly for us, he was happy, he was relaxed, he was positive, uh, and was relaxed, he was positive, he'd made that real decision to to sort of engage with us and to engage with life.
Speaker 1:So you almost got your son back. Yeah, yeah, well, yeah, that's exactly what happened.
Speaker 2:And when he went to school, he went to a mainstream school at first and it was a big school with like a thousand children in the school, so it was a bit overwhelming for him. So at the beginning, even though he was quite bright, he was sort of very much behind academically. But he sort of, you know, through his attitude and through his commitment and through his sort of just positive commitment to doing what he thought was right, he actually made progress. He ended up sort of going from having the lowest marks in the class to sometimes getting the highest marks in the class. He was giving presentations and he was really in his element, um, but what was still there, of course, because it's, it's a part of him and who he is, is his underlying sensitivity.
Speaker 2:And when he got to the age of about six, um, the other children started teasing him, um, and it started because, you know, he was wearing a device on his back that was sort of supposed to support brain signals to his, you know, signals to his brain and, um, it sort of let out a little tiny little ting every so often.
Speaker 2:But, you know, and the children started just got to have the idea that it was fun to tap it and it sort of gave daniel a lot of stress and over time his reaction became stronger, that became more interesting and more fun to the children and, uh, he had a huge regression at that time because he felt he was being like severely bullied. So it was almost like all of the progress went backwards for a while. Um, and you know, we moved him to an autism school where he is now um, so they still do the academic side, but they, they are very focused on creating that safer environment, um, and he's really benefited from that and he's got a lot of it back. But what, what happened from that moment is, um, there's a lot more anxiety than there used to be and and it, you know it goes back to that time.
Speaker 1:Yeah, kids can be very cruel, you know Without knowing that they're being cruel, you know they don't know the implications of what they're doing.
Speaker 1:I remember moving to America when we were a year ahead academically here and school starts different, so I was actually two years ahead, british accent very shy, and it was, like you know, a lord of the flies situation in terms of bullying. But it you know, the one thing I say about that is is it gives you empathy. You know what I mean, and I'm sure your son as well well you know, will never bully anyone and will always stick up for those children that are um in need of of support, he wouldn't have done anyway.
Speaker 2:I mean, he was always extremely idealistic. Yeah, you know, even like you know, he had these dinosaur toys when he was little and we used to play with him. But if we ever had like a big dinosaur eating a little dinosaur, we couldn't do that game because it was just too it was horrible for him and he would just go and get something else. He'd go and get an apple or something and feed it to the big dinosaur. It's sweet, yeah. And you know, he decided to to stop eating meat and animal products by himself as well. He was in a cookery class and he had an egg and he was supposed to make some pancake or something and he just held it in his hand and he thought, well, this, this could have potentially been a life. I can't eat this. And since that time he's been vegan.
Speaker 1:It sounds like he's got a very empathetic soul.
Speaker 2:He really has.
Speaker 1:And is he doing well now at the school?
Speaker 2:Yeah, he's doing well academically he's. You know the anxieties are still there. Yeah, he's doing well academically he's. You know the anxieties are still there, but you know they're not sort of, you know, stereotypical as you might think them to be, but you know it takes a lot for him to feel safe sometimes.
Speaker 1:And you know he's preoccupied often with trying to assure safety, above all disproportionate yeah, which is amazing because you've been able to create that place at home for him and at school, probably less able to create as safe as an environment at home, but it's still a specialized environment that can be safe as well. It's interesting to me because when you see a lot of therapies that people go and take their child to, just like even you as an adult going to a class and being taught how to, it doesn't really work. You need to have the whole family be on the same page and that's what your story really illustrates to me is the magic of when everyone kind of adjusts and and changes the way they look at life to accommodate the child's ability to feel safe and secure and then they can start to grow and flourish. Yeah, Absolutely. It's sad's sad. Most, most modalities of treatment don't do that.
Speaker 2:Yeah yeah, and that was. That was what central to the, the mifny approach. It was all about what they? They called it containment, about making the child feel safe and and content not contained in a in a in a box, obviously, um, you know, yeah, contained in a in a. You just feeling that they're being held, basically.
Speaker 1:Instead of being overwhelmed and shutting down. Yeah yeah, that's an absolutely remarkable, remarkable story and through Daniel you kind of looked also inwards to your own potential neurodiversity. Would you like to share a little bit about that as well?
Speaker 2:Well, that started when I launched a charity in 2017 called Transforming Autism, and through that, I was meeting other autistic people and I was thinking you know, this is, you know, I'm very similar in many ways, and I even said to one of them once uh, you know, I think I might be autistic, and he just said, well, of course you are. Do you think I'm stupid? Of course you are. So, um, yeah, I, I sort of um, I didn't get, I didn't go ahead and get a diagnosis, because I actually did go and see a specialist, uh, at one point, and, uh, he asked me a couple of questions and he said I'm sorry, after the question, you can't possibly be autistic because you answered my question and you made direct eye contact with me. So, you know, an autistic person wouldn't have done that. I later met Tony Atwood to do an interview with him when he was visiting the UK, for the listeners who don't know who Tony Atwood is.
Speaker 1:Can you just say who he is?
Speaker 2:He's actually one of the world's leading autism specialists. He's a British professor, but he's working in Australia and he was back in the UK to visit his family and, through the charity for the charity, I did an interview with him. So I met him a couple of times. And you know, I did an interview with him, so I met him a couple of times and you know, when we actually met in person, I said to him so, tony, do you think that I might be able to before I didn't finish the question out there who are doing the diagnosis, who actually understand what it looks like when an adult hasn't been diagnosed and they've basically molded their life and adapted their life and their way of being, in their way of communicating, so that, um, you know, they fit in, they don't you?
Speaker 2:Some people call it masking. Uh, it's not a phrase that I particularly enjoy, but yeah, and that guy who I went to was just a perfect example of that. You know it's just unbelievable stereotype of like if you look directly in the eye and answer a question clearly, then you can't possibly be autistic.
Speaker 1:It just seems so ignorant from you, know, but I guess my knowledge base and your knowledge base is very different. You know, I know a lot of, I know a lot of people with autism, you know. So I would say that that's absolutely not true. You know, yes, it can be a defining characteristic, but it's not necessarily a characteristic. So hopefully the world has moved on a bit, but I don't think it. That was that long ago really, was it? When did you?
Speaker 2:found the charity Well 2017. So a little bit of time.
Speaker 1:It seems to me in the last couple of years, like I remember even starting this podcast, and people are like oh, olivia, if you call it, say you know, neurodiversity, people aren't going to understand you. And then fast forward two years. It's really had a kind of revolution. Neurodiversity, you know, and you've got an actually interesting paper on that word and my choice of words there, interesting paper on that word and my choice of words there. But I digress. But I want to hear more about this charity and I love that a lot of parents who've walked in the shoes of struggling with their own children want to give back and want to help other parents who are like you and your wife were sitting there not being able to have help from any of the people that were supposed to help you. In fact, they were causing you more stress and more burnout than was necessary. So tell me about how you co-founded the charity and what it does and how it helps people.
Speaker 2:So how did it get founded? So it actually started in September 2016. I was at a women's networking group believe it or not, and I met another man there called Gilles Pelenk, who has two autistic children, two autistic boys, and so we connected over that and so we met a few times and we started talking about, you know, let's do something. Let's just do something, you know, and the other thing is the charity is very focused on early intervention. Let's just do something, you know, and the other thing is the charity is very focused on early intervention. And so that's what we had to go for. You know, daniel was two years old. It was very what we did was very, very early. He had also had also gone with his parents, so, with his children, he sent his boys to a very specialist nursery. That was very progressive in terms of supporting autistic children, and we both really understood the impact of early intervention. So that was an early principle of the charity, and at the beginning we didn't really know how we would meet this need.
Speaker 2:It took a bit of time for that to crystallise, but the intention was there. To begin with. We thought for a while we might bring a mifny center to the uk. Um before we actually you know, we actually did try that and we were just overwhelmed with how difficult it was to do to raise the money for, and you know also the the operating model, because it's so expensive. To put a family through something like that would have made it really difficult to sustain as well, so that turned out not to be something very practical.
Speaker 2:It took a few years, though, for us to come to the idea of creating our own services, both intensive and online. So the intensive services were created in association with Norland Norland College, uh, who are very specialist early years provider um, and it was it's all about trying I mean obviously not as intensive as what we went through, but it's about um giving families as much of that as possible in their own homes, so that we send two therapists to their homes separately, a child psychotherapist and an occupational therapist, and they basically work with the whole family, they help, they work with the child, and through doing so and through coaching the parents, they help the parents to have an understanding of how to to connect with the child, to how to have that um combination of attunement into what the child is is. Um is expressing his feeling, um and um containment to make the child feel safe, and if you start to bring those two elements into the life of the family, then everything changes, and that's what we've been finding with the early families. There's huge differences in how they're able to relate to their children and we're only able to do that in certain areas at the moment.
Speaker 2:We're still small. We're growing. We have a. I stepped away from running the charity last year. We have a new CEO now who's much better as a CEO than me, certainly for the, for the size of the charity that we have now.
Speaker 1:That's a successful model, though the guy is it that you know, usually it's the passion that starts the charity and the charities that are clever enough to actually get a ceo who knows how to be a ceo. It's the best way to to actually grow and and get more access to people and it was the right time for us as well.
Speaker 2:I mean, I actually think a couple of years earlier might have been the right time, but it was good enough. Um, and so hindsight is 2020 yeah, yeah, 2020 would have been a good time. Um, yes, uh, so she's trying to expand the program so that we will be soon working in more areas, we have more therapists delivering it and also possibly delivering it through other organizations as well, so that it reaches more people. That's what we're about, um, and what we've. What we also started to do a couple of years ago was um. It's not an online version of the same thing, but it's online parent groups.
Speaker 2:Now, these are much more, uh, much more cheap cheaply, you know, cheap for the charity. They're actually free for families to do this initial, you know, 10 to 10 week online program, but the aim of it is to pass on as much as possible to the families in the group. There's a maximum of 10 families in the group and you know we have two lead therapists who are both just unbelievably exceptional therapists. I'm just so humbled that they're sort of giving their benefit to the charity and to the families who come to the charity. They're sort of giving their benefit to the charity and to the families who come to the charity.
Speaker 2:Um, they work with groups of 10 families, up to 10 families um, weekly online with the parents, um, for 10 weeks or 12 weeks um, and they sort of they go through the same sort of material as we learn this same sort of thing about, you know, uh, containment and attunement, but they do it in a way that's led by the families, so the family's concerns are the things that sort of direct what happens next and you know. And then they were given things to do to put into practice. They learn from each other's experiences, and just this online program is making enormous differences for people. People are reporting how it's completely transformed their experience of living with their child in just a few weeks, and it's just an hour and a half a week online, and so I'm really, really pleased that that's been so successful.
Speaker 1:So would you say it's as successful as the in-person, the two people coming? No, I mean you can't but it has success, yeah, yes. Yes, it mean you can't replace, but it has success.
Speaker 2:Yeah, yes, yes, it's a different level, you know. You can't replace that, you know. And also there's another purpose for this in-person service, and it's like basically a proof of concept. It's a way of showing the world that what we're saying about autism, what we're saying about the potential that autistic children have and how it doesn't take much to unlock that potential, it's not just words on a page, it's not just nice ideas, it's something that actually works in practice, and so it's so valuable for us to have those in-person services as well that are making that really radical difference, and it's a lifelong difference as well.
Speaker 1:It's that balance, that balance right between the results and then the accessibility. So you, you it's not possible, probably you know, but it's so it's. It's getting it as much support out there as you possibly can, and it's not as if the, the one that's online, isn't having results as well. It's just not to the degree, it sounds like, of the in-person which, which makes sense from a logical perspective, doesn't it?
Speaker 1:But it's having really, really good results, remarkable results, yeah, so yeah, it's amazing and I can imagine for all the families who don't have anywhere to go, this is incredibly empowering, and I know that my listeners will be saying, well, is it in my area? Is? It in my area, so we'll put the links to to your charity on on the website, because it sounds like you're growing, so what you might say now might be different. In in.
Speaker 2:Yeah and it's in expanding, but but it's for the foreseeable future anyway. It's likely to be only in parts of the southeast of it okay, all right.
Speaker 1:Um well, hopefully it can grow autism.
Speaker 2:Parenting is everywhere. You know that's online.
Speaker 1:Yeah, okay, so that makes it accessible everywhere. And then you've also written a book as well, which shares the principles, right, but you've told us a little bit about it, but that's also kind of like the manual, wouldn't it?
Speaker 2:be. The idea of it is to inspire. You know, to share what I've learned, your journey, that other people can put some of that into practice as well, and you know the feedback is that people have been able to do that and it has really.
Speaker 1:I think it also gives hope too, because I think a lot of us who are dealing with these things you don't know anyone in the beginning of your journey who is going through these things. You feel very alone. It's a very common thing is that you feel very alone, and so reading someone else's story that sounds very much like your story is um there's a lot of stories.
Speaker 2:There's a lot of really really good stories and really useful for to read for, for for parents, uh, not to feel alone. What I tried to do differently in the book is is to actually give some actionable insights as well. Uh, so it's not step by step, you know, do this step one and step two. It's not like that, but it's like understanding and it's like sort of hopefully just to help things fall into place for people in terms of how to behave differently with their children. Yeah, and it's looking at it through a different lens.
Speaker 1:Yeah, yeah, and being able to understand them. You know, not with your rose colored glasses on, but being able to change that to be able to see them. I know it's, it's made a huge difference in my life of my daughter's ADHD to understand how her brain works. So I know how to parent her better. It's, it's been transformative for me and until I had that, understanding my expectations, the things that I, the pressure I was putting on her, were not helping her or the family. Yeah, so knowledge is power and then having strategies of then how you can then navigate, is so important because the parenting books don't work.
Speaker 2:No, no, they don't. And having that knowledge is almost like a first step, because what that knowledge will unlock or can unlock is the ability to then not just think, okay. Well, I know my child is experiencing this because I I've learned about how their mind works. But actually having that empathy and tuning into your child and like sort of understanding their cues and their uh, their, the little clues that they give in how they express themselves, not not academically, not sort of cognitively, but you know you're sort of more connected with the child and you're sort of tuning in to what they're experiencing, and that's the, that's where the magic.
Speaker 1:Yeah, I get. I completely agree with you and it's been. It's been so wonderful to have your words of wisdom today and to share it with my audience. I love to, when I'm ending a podcast, ask my guests for their three top tips that you would give and maybe under the lens of if they suspect that their child is autistic or if they already have a diagnosis, what tips would you give?
Speaker 2:Remember you're not alone. Well, there's a number of things. So it's like when that happens, when you start to understand that your child might be different from how you envisioned your life, you know your experience of parenting is going to be different. When that's new, that can be a trauma in itself for a parent. You know, and you're having to let go of the life that you wanted, or thought that you wanted at least. And you know people like me can come along and say, oh well, yeah, but you might have something better. You might end up with a more fulfilling experience. You might end up valuing your child much more than you would otherwise have done and connecting with them much more. You might end up as a richer person yourself. But at the beginning that's just words, at the beginning. Until you've connected with that, it's just, it's just some. You know airy fairy person on on a podcast saying, saying things that don't connect with your life.
Speaker 2:So I'd say, for the first step, allow yourself to grieve. Don't sort of. Don't sort of, because you see sometimes parents trying to deny the grief and pretend it's not happening. So you see, for example, parents of autistic children having a birthday party for their child. That's going to be horrific for the child because it's all got loud entertainments and loud music. It's going to be horrific for the child because it's all got loud entertainments and loud music and but it's. But as long as you're doing that, you're not. You're continuing to pile on to the child an experience of not being understood, not being able to feel safe and just feeling like there's nobody who can really look after the needs that they, they, really want.
Speaker 2:So go through the grieving process, because it's really important. It's a really important first step, um, and then, as that's, you know, after that's peaked, start to look at other people's experiences. Then you're more open. You're more open. We weren't open at the beginning, we didn't want this to be happening, but you're more. You know, when you've gone through a bit of grieving, you're then okay, right, let's. Let's take stock of where we are. Let's take stock of what we can make of it. Let's make use of other people's experiences. So go and read people's books Read mine if you would like to find out. Connect with other families who've been through what you're about to go through. Try to take inspiration from them as well, of what you know, what's better in their lives now that they couldn't have imagined at the beginning of their journey, which you probably can't imagine now.
Speaker 2:I would say immediately, join the Confident Autism Parenting course from Transforming Autism. And it's not a plug. I'm not saying it because it's my charity. I'm not saying it because you know we brought this up it, because you know we brought this. I'm saying it because I think for many families it's the quickest, easiest and most deepest and most powerful way to sort of really it's called confident autism parenting for a reason because there's no manual on this. You know we're thrown in at the deep end and and nobody can help us, because everybody else is coming from expectations of non-autistic children. And the aim of the course is to make us confident. Make us as confident or maybe even more confident to bring up our autistic children as we would have been if our children hadn't been autistic.
Speaker 2:And I don't know if that's three. I lost count. It might have been.
Speaker 1:I think it was better than three tips. It was kind of like a journey of like. You know, this is what you do when you're here and how you get to here and that transformation, which is what this was about, and it's about that you have to take that journey you know what I mean and you have to go through. You can't skip a step, you can't just, you know, jump to the end. You have to, you have to grieve, you have to and you have to find support and then, you know, find that confidence to be transformative. And you know, your story illustrates that there is so much hope and so much potential there that I think that's a good incentive, when you're just at that very first step as well, to see that light at the end of the tunnel.
Speaker 1:Well, thank you so much, guy. I've really, really enjoyed our discussion today. Thank you for having me. You're welcome and I'll have all the links to everything in the show notes so people can reach out and get on online with the program and perhaps in person too, and get your book, so they can, you know, have a trifecta of help and not feel so alone. So, thank you, thank you, thank you for listening. Send Parenting Tribe. If you haven't already, please click on the link in the show notes to join us in the private Send Parenting what's Up community. It's been wonderful to be able to communicate with everyone in the community and for us to join together to help each other to navigate challenges and to also celebrate successes. Wishing you and your family a really good week ahead. You, you, you, you, you.