Automated Transcript Episode 13
Episode 13: Late diagnosis a candid chat with bestselling author of Your Child Is Not Broken
Speaker Heidi Mavir
Dr Olivia Kessel:
Welcome to the Send Parenting Podcast, focused on supporting, inspiring, and empowering parents and their Neurodiverse children. I'm your Neurodiverse host, Dr. Olivia Kessel. We'll be speaking weekly with experts in the world of neurodiversity. No topic is too big or too small for us to discuss. We will include things like, how do you navigate education? How can you understand what your child's legal rights are to an education? Practical advice on neurodiversity, and most importantly, hearing the voices of other parents just like you. Looking forward to having you join us weekly as part of the Send Parenting Tribe.
Dr Olivia Kessel:
In today's podcast, I have the pleasure of speaking with Heidi Mave, author of Sunday Time's Bestseller, your Child Is Not Broken. In Heidi's funny, self-deprecating and honest book, she tells the story of her 14 year old son, Theo, and his struggles with school, which led to a late diagnosis of autism and A D H D, and how that not only helped him, but it also led to her own life-affirming diagnosis in her forties. This is the book Heidi Wish she had to read when she embarked on her journey with Theo as a medical doctor and with dyslexia running through my family. I find Hor Heidi's story fascinating, especially as the science is now very clear on the heritability or the genetics of neurodiversity. Basically, the likelihood that a parent and their children will both be neurodiverse, it's not caused by bad parenting or naughty children. Heidi will talk to us about her journey with Theo and the realization that Neurodiversity was really at the backbone of her family's dynamics and her normal, their late diagnosis didn't change who they had always been. We will also pick Heidi's brain on how best to help your struggling child and get her three powerful take out tips that you can access and implement immediately.
Dr Olivia Kessel:
So, welcome Heidi to the Send Parenting Podcast. I have been looking forward to having you on the show since I listened to your audiobook. Your Child is Not Broken. Well done. I mean, it is amazing to write a book and then to narrate it yourself. It was a, you know, amazing listening to it, and you're now on the top 10 Amazon bestsellers in the uk. It's phenomenal.
Heidi Mavir:
Yeah, we hit Top 10, and then we also got a Sunday Times bestseller last week. So last wow week, the last week of February, my little book was the third bestselling paper book, like for the whole of all books, <laugh> on the Sunday. You must just have
Dr Olivia Kessel:
To pinch yourself, you know what I mean?
Heidi Mavir:
It's, I mean, I said to my friend, what's everyone else doing? Like, don't they know how to sell books? What's going on? <laugh> <laugh>. But no, it's really, it's been incredible and the feedback has been amazing, and people have really felt validated and touched and connected with the book, which is exactly what I wanted. So, yeah, I'm really happy.
Dr Olivia Kessel:
So what, what was the inspiration like? You know, a lot of people say, oh, I'm gonna write a book, including myself, but you actually did it.
Heidi Mavir:
Yeah. I mean, I, I have been saying for absolutely years, I'm gonna write a book. I'm gonna write a book, and like, doing that thing of, you know, when people say everyone's got a book in them, and I never really knew what it was gonna be about. And then we had such a terrible time of things with trying to get provision for my son, Theo, who's autistic. Um, and I kind of spoke really openly and like publicly about that experience. And during that process people kept saying, she should write a book about this. You should write a book about this. And so then when I did finally decide I was gonna write a book, um, I didn't really know what it was gonna be initially. I thought it was gonna be like a guide for navigating the special educational needs system in, and then I had a meeting with, um, the team at Authors and Co who I self-published with, and I spoke to one of their editors and she said, just talk to me about what you're thinking and what you're feeling.
Heidi Mavir:
And I was telling her about, you know, our experiences and how I might write a guide. And then she was like, do you know, I don't think you need to write a guide. I think you need to write a book for parents who were where you were three years ago. That's like a don't worry, you're not on your own, you're not making this up book. So that's what I did. Um, so it was always about kind of like giving, writing the book that I needed when we started on our journey, um, and basically sharing with other parents the things that I wish I'd known then to kind of try and navigate their way around how tricky it can all be. So yeah, that was the inspiration. And, um, I think we did all right,
Dr Olivia Kessel:
<laugh>. Yeah, I think you did too. And you know, it, it, it is really powerful, you know, and you talk, uh, you know, you, you go through your Theo's journey and you, you know, one of the most powerful things to me was this trust, the trust that you have, the ch that your child has for you, which you, you take as a given, you know, your trust, your, your child trusts you and you trust your child to a degree, but then you, you go, you know, you describe how you go into the education system and how, you know, with all the best intentions and the education system is telling you to do something, and it's, it's almost eroding that trust with your child. And I, that was really powerful. Could you describe a little bit about that, uh, that journey for you with Theo?
Heidi Mavir:
Yeah, so one of the, I mean, there, there the tends to be two camps of parents of autistic children. And I would add that since Theo's been diagnosed as autistic adhd, so have I, so Apple doesn't fall very far from the tree, turns out. Um, but one of it tends to be that either, um, children are young, people are identified quite young, or they're missed, and then it comes out when they're older. And that was the case for Theo. So, um, he wasn't identified as having any additional needs until well into his teens. Um, and we moved from a tiny little school to a much bigger high school, and that's when things started to go a bit a bit wobbly, kinda the wheels came off for us. And he went within a pretty quick timeline of being able to be in school and kind of managing and appearing to be fine.
Heidi Mavir:
I knew, I now know he wasn't fine, but he appeared to be all right, um, to not being able to even get out of bed within about eight weeks. Um, and it was, it, the wheels came off pretty spectacularly and in a pretty devastating fashion for us. And I was faced with this child, and I didn't know what was wrong. Um, he started off by saying, I don't wanna go to school. And I was like, come on Theo, it'll be all right. You know? And that quickly escalated to him having like, what I now know, a meltdowns, but looked like panic attacks at the idea of getting his uniform on or getting in the car or going to school. And he couldn't tell me why. Um, he just kept saying, I, I, I can't, mom, I can't go. I can't go. And so what happened in that process was we had, you know, I I, I kind of clocked that we might need some extra help.
Heidi Mavir:
So I spoke to the school's special educational needs coordinator and basically said, do you think that this is, there's something else going on here. I'm not really sure. This is just inverted commerce anxiety. And, um, she was like, well, you know, he might show some autistic traits. And I was like, oh, okay. So went away and looked at it and, you know, it took me a while. Um, and I also had a friend who had an autistic son who <laugh> in conversation said to me, how long has Theo, how long have you known Theo's been autistic? Is autistic? And I was like, he's not autistic. So kind of, it all kind of fell into place around me. Um, it was a bit of a shock. Um, but what really happened for him during that process was he, we, we got advice, and the advice was just keep, bring him in him in, he'll be all right.
Heidi Mavir:
Like he can, he can push through this. Um, and it in became increasingly obvious to me that that was not a work for him. And we had an occasion where it was the, the, the, the Sanko and I wrote about in the book, the Sanko had said, you know, bring him in and just get him to touch the gate. Like, let's just work on gradual exposure. And so for about a fortnight, we did this ridiculous thing while we would drive to school, touch the gate with varying degrees of success, um, and then go home. And, and like that was him being in school. And then on this one particular morning, I, he'd had a really bad morning. I'd finally managed to get him into the car. We were late, we got to school, and I said, come on, the get out the car. And he was just sat crumpled and sobbing and it was awful.
Heidi Mavir:
And, and I kind of got a bit immune to it as well. It was, it's horrible to get used to seeing your child that distressed. Um, and I was like, come on, it becomes normal. Yeah, it does, it, it becomes normal. Um, and I was like, come on Theo, you can do it. And he was like, no, no, no. And so I managed to get him out the car. I was like, just get out of the car. So he got out of the car, and when he got out of the car, I locked the doors and the look on his face, it haunts me. And I kind of went round and I was like, come on Theo, you can, you can trust me. And he looked me dead in the eye and said, um, I can't though, can I, I can't trust you. And I was like, bugger.
Heidi Mavir:
That's the last day I tried to make him go to school. Everything changed in that moment. I just, there was something inside me that told me that it didn't matter what anyone else was telling me. I could not risk my child not trusting me. Like I, I, I, I had this kind of like, inherent sense that this was the beginning of something and we couldn't risk it. So, and that's why I want other parents to know is that as well intentioned as advice might be from all other people. You have got to prioritize your relationship with your child
Dr Olivia Kessel:
And to really trust your gut, you know? Yeah. Tru, trust, trust how you feel as a mom. You really, you do know best.
Heidi Mavir:
Yeah. And you do question yourself, you know, you do like, start to kind of like gaslight yourself maybe, I don't know best. Maybe I am just neurotic. Maybe I am just anxious, you know, I'm not pretending that I'm not anxious or neurotic <laugh>, but that doesn't mean that I'm not right about what my kid needs <laugh>, you know? Um, so yeah, it, that, that's really, that's where we found ourselves and that's always been my, since that moment. And I don't get it wrong every time at all, you know? Um, and it's certainly not, you know, this is something that we'll have to work on for the best of our lives, I imagine. Um, but I know now I can say to Tim, it's gonna be okay. I've never let you down before. We'll work it out and he can believe me. Um, and that, that's really good for him to be able to regulate in that way because he then knows he's got someone on his side and hopefully the wheels won't come off as spectacularly as they did last time.
Dr Olivia Kessel:
Absolutely. And you know, it's interesting cuz you said to me at the, at, at the beginning that, you know, the apple doesn't fall very far from the tree. And I remember in your book, you were talking to your friend Kirsty, I believe, and you were doing a great Australian accent, I must say, in the narration.
Heidi Mavir:
Yeah, yeah, yeah. <laugh>. Yeah.
Dr Olivia Kessel:
And you know, she, you were saying to her, oh, you know, with Theo, um, he's a bit upset with me because I haven't, you know, I didn't recognize the autism before, you know, earlier. And she kind of said to you, well, yeah, you know, you realize you and him are very much alike and you're like, ah, what? And I thought to myself, you know, it's interesting when you look at neurodiversity, how inheritable it is, and like, I've looked at, you know, dyslexia because I have it. My daughter does, my dad does. And I looked at some of the research and basically like with dyslexia, it's about 40 to 60% of parents and children have it. With autism, it's 64 to 91% with a D H D, it's 74 to 88%. So it, it really is genetic. And if you look at autism in particular, like 20% of it is due to like a single gene mutation.
Dr Olivia Kessel:
And then 80% is due to multiple gene mutations that we all have in our genome, you know, completely normally. And when you get that little mutation, which causes a, uh, a disruption basically in how the nerve cells speak to each other. So nerve cells kind of, they like whisper a message and it goes to the next nerve cell and it goes on in your, in your nervous system, and then your brain goes, aha, this is what it means. And when you have that mutation, the brain kind of goes, well, um, that's not actually, you know, I'm interpreting this a bit different. I'm, I'm interpreting the social cues a bit differently and I'm interpreting the sensory information a bit differently. But what this does, like this research shows us that it has nothing to do with bad parenting. It has nothing to do with vaccines, which I still hear, which I'm amazed as a doctor. Yeah, yeah. And it has nothing to do
Heidi Mavir:
With my book that's in, that's in capitals <laugh>, the MMR vaccine does not cause autism. <laugh> what causes autism is autistic people having sex with each other. <laugh>
Dr Olivia Kessel:
<laugh>. Absolutely. And that's what's so interesting too, you know, as a neurodiverse person, you pick other neurodiverse partners because you get along, you know? Yeah.
Heidi Mavir:
<laugh>. Yeah. It's so funny. I really just dislike, I, I mean, I know it's like the, I really dislike the word mutation. Ugh. It makes me, I know, you know, it's
Dr Olivia Kessel:
Aleia word.
Heidi Mavir:
Yeah. It's that thing of like, when I look back through the generations of my family, I can see that we are a fully neurodivergent family tree. I have a cousin who, uh, is dyslexic and he's the first person in our family to get a PhD. And it was always a massive deal. Like he got a PhD and he's dyslexic. You know, I've got like, you just look at my family tree and it's so clear, and this is why I didn't pick up on it, because the things that we do that are autistic identity, autistic culture are so embedded in our family. That's how we
Dr Olivia Kessel:
Can, it's normal.
Heidi Mavir:
Like, it's not unusual for us, you know, I remember bringing a boyfriend home to, um, in fact it was Theo's dad, uh, to a family reunion. I mean, the fact that we have family reunions is autistic as hell anyway, but whatever <laugh>. Um, and um, and, and there was a, there was a, it was a really hot day and we were all rolling around on the grass and there was like a massive family tick, tickle fight, right? Like fully grown adults rolling around on the ground with each other, tickling each other. And I remember him saying, I've never seen a family do that before. And I was like, oh, we do this all the time like this. Now I know that's just our sensory seeking. That's how we do things. That's how we, uh, that's how we are in community with each other. That's how we physically express ourselves.
Heidi Mavir:
That's how we are sensorially connected to each other. It's how we regulate other people seeing like 30 adults rolling around on the ground, tickling each other are like, what the hell? <laugh>? We're like, oh, we had a great tickle fight, you know, <laugh>. You know. And so it's that thing of, like, for me, it makes absolute and total sense that people in the same family group, like biologically connected family group would share a, your, yeah. Like genetically, our brains are informed by the genetics of the brain that contributed to us. Yeah. So, you know, and I always like to think that it's, this is the challenge is that for me, what people say to me, you know, oh, how do you know what's the autism and how do you know what's the A D H ADHD? Or how do you know what's the autism? How do you know what's mental health? Or how do you know what's the autism, how do you know what's nurture like? The fact is I don't, like, I have an autistic A D H D brain, and it informs every part of my being
Dr Olivia Kessel:
The, the science of it, you know, and, and you know, the, the papers that I've read on this in terms of research, it is a continuum. The A D H D autism is, you know, the, they're likely to occur together and it's, it's just us trying to define it as one or the other, but it's actually part of a continuum of human variation. Yeah.
Heidi Mavir:
Our biology doesn't call it those things. We've yes, decided to, um, identify particular traits. And if you, if you, you know, if you can tick off enough boxes on one particular set of traits, you'll get an ADHD diagnosis. And if you can tick off another set of, you might get an autism diagnosis or a dyslexia diagnosis or a, um, uh, uh, a personality disorder diagnosis or a mental health diagnosis, it's all it is is just that we have decided how we will categorize things or not. You know, and there are many people for whom diagnosis will never be possible because they have barriers to that. Um, yeah. And that's also important to recognize. I think it's, I generally genuinely believe that there are more neuro divergent people on this planet than there are neurotypical people. I just, you know, think systems are set up by neurotypical people and the patriarchy and all that rubbish, but I think there are very few people who would pass an exam to be neurotypical, very few
Dr Olivia Kessel:
<laugh>. You know what, and that's interesting. Are there exams to, you know, to make you, you pass <laugh>, but you know, you, you did have your eureka moment. Yeah. And I, I imagine that was kind of like an aha moment, you know, with you and Theo that had already been percolating with your family and all those stories. Did it change how you parented him based on that? Or was it just, you know, did it, you know, how did it impact?
Heidi Mavir:
Yeah, I mean, the eureka moment did, like, I did have that shift in that second where I was like, okay, we're, we're not doing this anymore. And then what followed was as I realized and as I made the connections and as I, I had to do a lot of unpicking of the things that I thought about, particularly about autism. And I did have that experience right at the beginning where, which I think a lot of parents have, where I had my child in front of me and they hadn't changed one bit, but everything I thought I knew about them had shifted. And I had to really work hard to get my head around that I had to go through everything and like refile things and, and re like things that I thought that when looking back on them, I thought, well, what happened that time when we were in that Yankee candle shop and he had an absolute meltdown?
Heidi Mavir:
And at the time I didn't know what was happening. Now I know <laugh> Yankee candle shops really stink. You know, he was having a full sensory meltdown, you know, so I, it gave me some understanding, but it also took a lot to process. And I think for a lot of parents, that is a very difficult, um, situation to find yourself in. And, and what I was very fortunate for was that I had people around me who were a little bit further on, who were able to just keep reminding me, he hasn't changed. You have new information, not a new child. Um, so, but that did make a
Dr Olivia Kessel:
Difference.
Heidi Mavir:
And then did,
Dr Olivia Kessel:
Did that shift again when you realized your own diagnosis?
Heidi Mavir:
Oh yeah. That messed with me big time. Like, that was even more of a head screw than realizing that he was neurodivergent because I've got 46 years of thinking that there's something wrong with me, that I'm broken. Yeah. That I, you know, I have had more therapy than probably most Hollywood stars <laugh>.
Dr Olivia Kessel:
Like
Heidi Mavir:
I have spent a long time trying to work out why people misunderstand me so much, why I misunderstand other people so much, why particular things bother me so much that nobody else seems to be bothered by. I now know that other autistic people are bothered by those things, but I didn't at the time. And that was a big, so I had like this, we had this kind of like, um, rolling ball of, of like snow that was getting bigger and bigger every time we uncovered something. And it did get, and it is still can be very overwhelming, but I think all knowledge is, is powerful and all information is useful. So it just, I had to really, I've had to really learn to just take my time with things when new information comes up to just, cuz you know, the A d h ADHD part of my brain is very reactionary, so <laugh>, I like standing joke when I was at, when I used to work in an office, like it was a standing joke that I'd be like, oh, where's my, ugh, oh, here it is. Like, that is my like, like initial panicky reaction to almost anything. Oh, for God's sake. You know? So I've had to work on that a bit. Um, and it's, I'm still, you know, you don't get to 45 not knowing something about yourself then find it out and not have an impact on every part of your life. No. You know,
Dr Olivia Kessel:
<laugh>. Yeah, absolutely. Um, you know, a huge impact. And also what's interesting, like is how both you and Theo through masking kind of that sympathetic response that you've been describing and how it, it had such an impact on both of you in terms of your wellbeing mm-hmm. Because in, you know, sympathetic response, so you have your autonomic nervous system, right. And your autonomic nervous system is your kind of fight or flight. Yeah. So it's got two parts to it. The sympathetic, which I like to describe, is like, you have your foot on the accelerator, and when it's time to press the gas, you know, uh, you press the gas, your heart rate goes up, your breathing goes up, you're, you're in a, in a fight or flight kind of mode. And that was really evolutionary beneficiary. If there was a lion coming to eat you, you wanna press your foot down on that gas pedal Yeah.
Dr Olivia Kessel:
And either run 'em over or, you know, get out of there. But then you've got the other part which is you're parasympathetic, which balances it. And that's like, well, maybe you've killed the lion and now you're sitting down to eat it and it's time to relax and chill and digest that lion. And those are kind of always in balance. And you know, when you go to work, you go to school, those, those stay in balance. But if you have a neurodiversity, the sympathetic system can be really activated, like you described in your work situation there. Yeah. And the parasympathetic isn't working really well. So then you, you do, you have coping mechanisms, which is like masking, so you suppress that feeling of the fact that a lion is attacking you and you act all normal, you know, pretending, oh, that, that lion's not there about to eat me, you know, I'm, I'm gonna, you know, look you in the eye and behave normally. Whereas it's having an incredible toll on you to do that. And, and Theo as well. And I think the way you describe that, and I think people don't, um, understand masking, um, and how it impacts somebody. So I'd love to hear, you know, how it impacted Theo how it impacted you to, to, to get a better understanding of what people are going through really when they're trying to quote unquote be normal. Yeah.
Heidi Mavir:
Normal. What even is.
Dr Olivia Kessel:
Yeah. What is normal
Heidi Mavir:
<laugh> No, this thing is normal and time isn't real. No, I, they're the main <laugh>. There are mantras in our house, um, and you're not the boss of me, they're the three <laugh>. Um, so, but I think what has been really helpful for me in understanding all that stuff that you're describing around like polyvagal, basically polyvagal Yeah. And understanding our, you know, automatic survival responses to stimulus and understanding that for neuro divergent people who more often have heightened sensory systems. So we feel things much more keenly with all of our sensors or some of our sensory, sensory responses are deadened, I hate that word, but they're, you know, they're muted. Um, and so what for me that meant was growing up and heading into parenting, I had, uh, almost and still do an almost permanent fire alarm in my brain going off. And that is my fight off flight response.
Heidi Mavir:
And that fire alarm is going off in response to stimulus automatically in my surroundings. But I've been socialized and conditioned and learned that it's not safe to respond to that fire alarm. And I've learned that that fire alarm doesn't know if my house is on fire or if the toast is on, is toast is burning. So, but this is only what I know from what I've learned about polyvagal theory and, you know, sensory responses and stress responses. And in addition to that, because I have spent so long in that heightened response, that hypervigilant response, absolutely. It has become a trauma response. Absolutely. Which is also a type of neurodivergence traumatized brain behave differently. And when I say trauma, I mean trauma with a small tea, not a big tea. Um, but you know, that cumulative effect of feeling like your brain is on fire and you can do nothing about it, and you mustn't show it because it isn't safe.
Heidi Mavir:
You know, the occasions when as a teenager I showed that, that was how I was feeling, the social distancing and isolation that came with that, because people didn't understand that behavior. You know, I can remember having a meltdown in a nightclub when I was 19 because my friends had just gone outside. Cause the lights had come on. And when I came out the bathroom, there was no one there. And I lost my mind afterwards. They were different with me. Like, they were like, what is with her? Like, I became unsafe and unreliable and I wasn't unsafe. I wasn't unreliable. Oh. You know, but I learned from that and other experiences and our young autistic people learn this, that it isn't safe to freely express what we're thinking and feeling and to freely be in the world in authenticity. So what we do, not even intentionally a lot of the time, is we mask those responses. And sometimes we choose to learn those masking techniques. You know, I was obsessed with body language when I was a teenager. That was me trying to learn how to be socially acceptable. Sometimes we don't do it intentionally, but the impact is, is that there's a disconnect between how we show up in the world and how we feel in the world. And that impacts our mental health.
Dr Olivia Kessel:
Absolutely. Because you're, you're, you're, you're almost acting, you know? Yeah. You're
Heidi Mavir:
Not, you're your constant state of hypervigilance. You're dynamically risk assessing every single moment of every single day. Am I doing, am I behaving the way that is expected? Am I put, and this, you know, and I'm a cisgendered white woman for me, I can get away with a lot more. But you know, for other people who are maybe people from the global, uh, majority in terms of their ethnicity or people who are from the LGBTQ community or people who have other disabilities, they're not afforded that privilege. You know, I can be out in the world and not draw attention to myself if I choose. Other people don't have that privilege. And so for many autistic people who have also from those intersections of other marginalized grapes, it's dangerous to be yourself, you know? Yeah. You're at risk sometimes of actual physical harm and even death. So that level of hypervigilance that you apply to every single circumstance, situation, conversation, relationship, shopping, trip, car journey, it's exhausting. Absolutely exhausting. And at some point, the wheels come off and you are thrown into either shut down or meltdown or mental health crisis. You know, that, that, that's very common. That's why the life expectancy for autistic people is so significantly lower because one of our greatest health risks, aside from heart disease is suicidality.
Dr Olivia Kessel:
Yeah. It's a, uh, and I mean, what, what is the, and, and I dunno if you have the answer to this, but how can people support and how can, how can the world change the need to do that? Or, you know, how can, um, how do you help yourself now? How do you help Theo in terms of avoiding that output, you know, and, and being yourself? I
Heidi Mavir:
Mean, it has to come from understanding our own neurotype and our own communication style. And it has to come with a huge amount of self-compassion and a huge amount of understanding and people around you making, you know, accommodations. I guess we've got a lot of work to do around understanding neurodivergence, particularly autism. There's so much stereotyping and so much misunderstanding about the way that autistic people are in the world. Um, but I think in terms of, if you're supporting a young person, for me, the keys have been showing him, he has adults he can trust and modeling through those adults what self-advocacy looks like. So he is, for example, today, he's not in college, so he's, he's back in a mainstream setting now, and it's not been without its hiccups, but he's done phenomenally well and we've worked really hard and he's really well scaffolded and supported.
Heidi Mavir:
But we had a blip yesterday and last night, he said to me, I don't think I'm gonna go to college tomorrow. There wasn't even a conversation. It was like, okay, cool. No problem. Like, he is allowed to make those decisions. And, um, and I know that letting him, not letting him, but supporting him to make those decisions means that he is becoming stronger in being able to advocate for his own needs. Cause I know that for a lot of parents of neurodivergent children, I saw some research recently, and it, a huge proportion of us have significant anxiety around what happens when I'm not here anymore. So we have to prepare our neuro divergent children, young people for life without their parents, you know? Mm-hmm. <affirmative> and which is not something any of us ever wanna think about.
Dr Olivia Kessel:
No, but
Heidi Mavir:
I, but I do think there's, there's power in helping, like I look at Theo now, he's 18, and there was a, there was a post on a, another page on Facebook the other day, and it said, um, for parents, autistic kids, I wish, I wish that that was it. And I put, I wish that my 18 year old son could go and speak to 18 year old me and tell me what he knows about the way our brains work. Like we are breaking that cycle. This generation of autistic young people are the first generation who really understand neuro divergence and what that means, and are learning to self-advocate. And we've got a long way to go. But I am encouraged by that, you know, and I think that that is how we empower our young children, young people moving forward for sure.
Dr Olivia Kessel:
And change the world really to change, you know, to a greater extent. You know what I mean?
Heidi Mavir:
Come on. Oh, I mean, I don't like that whole, like that that, uh, rhetoric around, you know, neuro divergent people have superpowers. Like, I'm just like, no, we're all human. Let's not be ridiculous. <laugh> and neuro divergent people when they are supported, my God, the things we can do, the conversations we can have, the difference we can make, the, the, the subtleties we can bring to conversations that you just don't have if we're not in those spaces because we see the world differently. So, and we experience the differently. And that's what makes life interesting for everybody. And I think one of the things that was really interesting with the book, so we printed the book in a dyslexia font, right? And I did that because I knew that I would have a lot of dyslexic readers, the feedback I got from people who are not dyslexic, that said, this is the best book I've ever written.
Heidi Mavir:
And the read read. And the reason it's the best book I've ever read is because it was so easy to read. And that's because of the font. And that's an example of if we make accommodations for neuro divergent people, people who are not neuro divergent, or also benefit if in every classroom we had noise counseling, air defenders, and people could just put them on when they needed them. People who are not neuro divergent would still benefit when they're feeling overwhelmed. You know, if we, if just all of these accommodations, if we were just much more accommodating for difference, everyone would benefit. I'd like to see that, to see all our difference. Yeah, of course,
Dr Olivia Kessel:
Of course. Yeah. I completely agree. And our education system is, is is not at all geared towards that, you know, okay. In the UK or elsewhere. But, um, there are pockets of good, but it's, uh, um, it's, it's, it's a system that needs a major overhaul. Now you, you wrote this book for people who are, you know, starting their journey with their children and you know, like you were years ago. What advice would you give, if you could crystallize it into a few key points to parents who are starting out on this journey and, and you know, maybe haven't read your book yet and are trying to be there for their child, what would you, what would be your key crystallized, you know, points you would say to them? Yeah,
Heidi Mavir:
My book <laugh>.
Speaker 3:
I agree with that actually, I do agree with that <laugh>. Um,
Heidi Mavir:
I think, um, the first one is you like, and it sounds a lot simpler than actually it is in reality. You have to trust your gut. And that can be difficult. You have to learn what that looks like for you, especially if you're potentially a masks neuro divergent adult. We learn not to trust our gut. We learn to, um, we gaslight ourselves out of believing what our nervous system is telling us. But you have to trust your gut. You have to find a way to tap into that inherent knowledge that when you are connected with your child, you will make the right decisions like you will. It's impossible as a parent to get it wrong for your kids if you are in connection with your child. And that looks different for everybody. Um, so that's the first one. Trust your gut. The second one I would say is prioritize mental health in your household above all else.
Heidi Mavir:
Um, GCSE's exams, whatever can wait. You know, that we have the opportunity in, you know, the western world to take qualifications whenever we need to. Um, do not underestimate the value of mental health and wellbeing within your household. Prioritize it at all costs. And then the third thing I would say is find community. Find people who have shared experience with you because it is so isolating to be in this on your own. And people have well-meaning, but not very helpful advice for all of us on a daily, if not hourly basis. Right. Um, and you need people around you who you don't have to spend ages explaining your backstory to. You need trauma informed, accepting neuro divergence affirming communities or a community. And for me that's predominantly online where you can say to another parent, this is what's going on. And they can go, yeah, that's. And not like, and to not have to feel like we all have to fix each other all the time. I think community is where really useful affirming conversations happen. And it's also where really good knowledge is. Like I learned more from other parents of sent children than I ever learned from any professional. And I've worked with some incredible professionals. Um, and that's not to take away from people's actual qualifications and piece of paper that says that they could sit and examine. They're very clever. Thank you. You know,
Dr Olivia Kessel:
Um, you know, it wasn't easy though. You know, lemme be dyslexic. It
Heidi Mavir:
Wasn't easy. I know.
Dr Olivia Kessel:
You know, I used to hate the kids that would be like, Ooh, yay, multiple choice. I'm like, what? <laugh>? Yeah. You like
Heidi Mavir:
Them? Oh my god. Oh my God. I would always lose my place on multiple choice papers anyway. And,
Dr Olivia Kessel:
But yeah, I used to be able to convince my professors that actually there was more than one right answer, but they just weren't seeing it in the way that I was seeing it. <laugh>. Right.
Heidi Mavir:
<laugh>,
Dr Olivia Kessel:
Right.
Heidi Mavir:
You know, I, but I just, I local knowledge, especially tap into local networks where there are other parents of children who have similar challenges to your child. Um, and ask them like, the best, cause some knowledge I got was local knowledge.
Dr Olivia Kessel:
Because sometimes it's challenging, you know, when you first start to, to go on this journey, you're in a school where maybe, you know, you don't know who else is struggling, you know? And then you have the parents who are like, oh, my child is so fantastic. They, they cook breakfast for me and bring me coffee in bed, and they're all dressed in their uniform. And you're like, well, that's not my world. I better be quiet about what my world is.
Heidi Mavir:
I'm cry in three weeks. I dunno where my hair is
Dr Olivia Kessel:
<laugh>. So yeah. Uh, you know, but when you do find that community, it's, it's, it's that feeling of not feeling alone and that, you know, it, it is normal what you're going through. It's just you know that you haven't met the right people, you haven't met your tribe.
Heidi Mavir:
Not only is it not, not only is it normal, it's not uncommon, right? Yes. So this is what I didn't realize, and, and I write about this in the book, you know, I was told that professionals hadn't met a child like my son before. I mean, of course they haven't, he's freaking brilliant. But I was told that he, his difficulties were not something they'd seen before, not something that we used to, you know, all kids don't like to come to school, but we've never seen this. And then as I tapped into networks, I realized that wasn't true. I met other parents from the same school whose children had pretty much mirror experiences as we do. And the professionals were choosing not to tell us.
Dr Olivia Kessel:
It's just, just, yeah, it's unfathomable. Like why?
Heidi Mavir:
I think, I mean, who knows? Let's not go into amateur psychology, but I think there's something about the education system is so built on, um, aveo, and it's perpetuated by the notion that inherent children are inherently naughty and parents are inherently difficult and educators know best. And
Dr Olivia Kessel:
It's funny, it, it has a lot of, uh, alignment with medical, because I remember, you know, being trained in Ireland, I trained in Ireland, and, and, and my consultants used to me, ah, Jesus, Olivia, don't, don't tell the patients what's wrong with him. It'll just upset them. You know, it's, it's best we know what to do with them and we'll tell them what to do. And I mean, I was like, really? And like, it, it is evolving slowly and it is becoming more pa you know, patient led, but I, I view kind of health and education kind of going, you know?
Heidi Mavir:
Yeah. I mean, they're both underpin, aren't they? I think the issue is systemic and they're both underpinned by, um, attaching themselves to the medical model of disability rather than the social model of disability. So the medical model being, yeah, people who are disabled are disabled by their disability and there is something tic comments wrong with them. The social model being, for the most part, people who are disabled are disabled by the fact that society do not make accommodations for their dis disabilities. And that's what disables us. Now, I'm not to say that the two can't be true, but absolutely the social model of disability is where we need to be moving towards because that's where will be made.
Dr Olivia Kessel:
Completely agree. Absolutely. A hundred percent agree. And it's, it's books like yours that are gonna help to, you know, make that aware and make people aware. And I really wanna say a big thank you, Heidi, to coming on the show today and also for offering us a, a, you know, the listeners a 50% discount on one of your webinars. Mm-hmm. <affirmative>. So I will have all of that information on my website for listeners to go to. Um, do you wanna tell us a little bit about your webinars?
Heidi Mavir:
So we have a bank of webinars that I've delivered live over the past sort of 18 months, and they've all been recorded. So, um, they're on everything from not, they're not on everything that's a lie. There's not, they're aren't any on shoes, there aren't any on dalmatians. Um, but they're on things like, uh, getting an e h CCP education, otherwise at school. Um, e HCP processes, annual reviews, um, p d a, so like there's, there's a good mix. Um, and some of them on my own, some of them with parent professionals, some of them with Send experts, and they're all available on my website. So people can just go on the website, heidi mava.com, click on part four parents or four families at the top, click down to webinars and decide which one looks right for them. And I know I'm gonna give you a discount code and then they can, uh, they can get a 50% discount. So instead of paying 20 pounds, they'll pay just 10 pounds,
Dr Olivia Kessel:
Which is brilliant because there's such, the need for information is so immense, you know what I mean? And I wish, you know, I had had information or even access to your webinars because you're trying to figure it all out and you don't have to figure it all out yourself. So that is a great resource for parents to be able to access so that they don't have to suffer all the pain. <laugh>, yeah. That many of us
Heidi Mavir:
Have suffered. I mean, like, you know, ride on my mistakes, <laugh>, learn from, you know, learn on us. You know, like it doesn't have to be, you don't have to go through this yourself. You know, other people did that for me and I wanna do that for other people.
Dr Olivia Kessel:
That's brilliant. Well, thank you very much for having the time for us on the show today. And I'm sure I will be inviting you back because it has been wonderful and I'm sure that you're gonna be doing exciting things in the future that we will be looking forward to hearing about. So thank
Heidi Mavir:
You so much.
Dr Olivia Kessel:
Thank you for listening. Send Parenting Tribe. What a pleasure to have Heidi on the show to affirm that we're not alone, that we really should trust our gut and prioritize our children's mental wellbeing. And to find a community which you found here as part of the Send Parenting Tribe, please visit our website, s e n d parenting.com to access a link to Heidi's book and also the discount for her webinar. Wishing you and your family a good week ahead.