Meeting People
Sophie Beeley: autism, parenting, Raising Daisy, and the waggle dance.
The more reductive amongst us have bucketed autism as a disability and drag on resources. The reality is that it is much more. In one of the most challenging but fulfilling conversations I’ve had since starting the podcast I sat down with Sophie Beeley, author of Raising Daisy, a Substack that draws on her experience as mother to a wonderful girl that was diagnosed with “autism spectrum disorder” at the age of five.
We discussed the numerous battles that the family faced with their local government and educational establishment as well as the broader stigma and perceptions around autism. A one-size-fit all approach to learning at one end and an overdiagnosis of trendy neurodivergence at the other leaves many children and adults unable to access the conditions necessary for them to learn and thrive.
Perhaps autism is a necessary state of being from an evolutionary standpoint, as demonstrated by the explore-exploit trade-off that bee populations employ. Time will tell but I hope this conversation helps to demystify a topic that affects all of us from at least one degree of separation.
You can find Sophie’s substack, Raising Daisy here: https://raisingdaisy.substack.com/ and watch the full episode on YouTube here: https://www.youtube.com/watch?v=f3eWvDuhxvc.
The more reductive amongst us have bucketed autism as a disability and drag on resources. The reality is that it is much more. In one of the most challenging but fulfilling conversations I’ve had since starting the podcast I sat down with Sophie Beeley, author of Raising Daisy, a Substack that draws on her experience as mother to a wonderful girl that was diagnosed with “autism spectrum disorder” at the age of five.
We discussed the numerous battles that the family faced with their local government and educational establishment as well as the broader stigma and perceptions around autism. A one-size-fit all approach to learning at one end and an overdiagnosis of trendy neurodivergence at the other leaves many children and adults unable to access the conditions necessary for them to learn and thrive.
Perhaps autism is a necessary state of being from an evolutionary standpoint, as demonstrated by the explore-exploit trade-off that bee populations employ. Time will tell but I hope this conversation helps to demystify a topic that affects all of us from at least one degree of separation.
You can find Sophie’s substack, Raising Daisy here: https://raisingdaisy.substack.com/ and watch the full episode on YouTube here: https://www.youtube.com/watch?v=f3eWvDuhxvc.
Hello and welcome to Meeting People with me, Amol Pandey. Meeting People is a podcast where I have long conversations with adventurous, rebellious and sometimes courteous free spirits. Sophie, thank you so much for sparing the time and being with us in this rather extraordinary place. We'll give some context on that later, maybe, but why don't I, to kick off, give people context as to why we're talking? So we've got a mutual friend, mr Cornell, who put us in touch for the podcast, and he's the godfather of Daisy, your oldest child your daughter um, who is how old now?
Speaker 1:she's 17 she's 17 and he put me, pointed me in the direction of your blog called raising daisy and I thought to start. I would be really interested in you, um, talking about that day when she was three years old and you had that sort of matronly figure at primary school. It was a catholic primary school the catholic primary school. Yeah, and the first time um you were made aware of of of daisy's development yeah.
Speaker 2:So she was, um, she was really happy, confident, settled little girl and she, you know, started school and was fine and she was in nursery. So she was just three and I went for the parents evening just thinking how complicated. I didn't even give it any thought actually, I just expected everything to be fine. And she had a supply teacher who wasn't, who I didn't particularly like, but anyway, she sat me down and said Daisy can't sit still with her legs crossed, she doesn't interact with the other children, she's very switched off and she plays on her own a lot and we think she's very immature and I think I was completely taken aback and I just got very angry and thinking how can you be, how can you? You know, what does it matter if you can't sit down with your legs crossed? And how can you be immature when you're three? I just don't understand how that can be a thing.
Speaker 2:So, yeah, I wrote letters to the school complaining and everything else. But actually later on, when she was finally diagnosed, I realized that this teacher, who was absolutely brilliant and she had identified Daisy's developmental difficulties, it probably shows an issue with the system and I think this is really complicated for teachers. We might get into it a bit more later. But how do you, how do you, tell parents that there's something, an issue with their children? And parents often respond really badly to it, and if they don't see it, they they get quite angry and defensive, which makes it very hard for teachers.
Speaker 1:So you kind of ignored at the time you wrote an angry letter and you kind of backed it up, because, as far as you're, aware she was fun-loving.
Speaker 2:Yeah, and I had another baby, mio Mungo, I think, was 18 months. At the time I think I might have been pregnant with Bertie. You know know, life just sort of carried on and there wasn't really very much I could do. I think I don't remember being particularly involved in the playground even then with other mothers. I think we operated as our own little unit. So I don't think that Daisy was particularly making friends or seeing people outside school and and the the the rare occasions that she did, I would find her separate from the other child.
Speaker 1:Yeah.
Speaker 2:I usually put that down to the other child rather than blaming Daisy, if you see what I mean. And so, no, it wasn't until she was in reception that these conversations continued and she was put on um, an independent educate. No, an individual education plan, an iep where they set targets against the child and the teacher just monitors them. And I think she probably had a bit of extra help from a teaching assistant in the classroom. Yeah, um, and then, but you know, I can remember having conversations, the teacher saying she's very flat and doesn't have much energy, and I wondered if it was her diet, if she needed, and I knew what she meant. Sometimes if you gave daisy sugar, she suddenly became a lot more alert. Yeah, um, but because she was my eldest I you know, I didn't, I didn't see anything that was that was particularly alarming. And the.
Speaker 2:The real shock for me came when she was. She went in and I, sorry, in in reception. I had said to the um, uh Senko, the special needs coordinator, um, should I be doing more? And she said no, no, no, no, we don't need to worry any more about this at this stage. So I was sort of still quite relaxed. And then in year one in the autumn term I was called in and we had a meeting with her teacher and the SENCO and a few other people, I think, and the rest of the class were all doing spelling tests and times tables and I suddenly asked her no, there's just absolutely no way, there's no way that daisy could could do this right. And that's when it really dropped. The penny really dropped, and I was like, okay, there really is a gulf here. I really loved her year one.
Speaker 1:She was sorry.
Speaker 2:Year one is year one, so she must have been five, yeah, exactly, and um. So after that meeting I can't remember what we agreed, but after that meeting I went to talk to her teacher, who was a young irishman called mr durbin, who I really liked, he was so nice and I said, look, are you telling me everything that you think? Because, if I don't know, I because there's nothing I can do to help. And he just said I don't know, I'm not qualified to say this, but I think there's a possibility she could have autism. So, whoa, and that was the first time that anyone had. You know, even now it's sort of it's, it's an extraordinary, the impact it has on you and even now it can make me yeah it's quite tearful.
Speaker 2:Anyway. That week, literally that weekend, we were staying with friends and I've got a um a friend who is a pediatric neurologist at st thomas's, and I just told her what had been going on and she observed Daisy just playing that weekend and she was like, yeah, you definitely need this. And she was brilliant. She said you need to. I'm going to put you, you need to go to your GP, you need to get a referral. I'm going to get you bumped up the list at St Thomas's um, you need to do something called ABA, which is called applied behavioral analysis.
Speaker 2:So she sort of threw all of this stuff at me and it was just you need to do something called ABA, which is Applied Behavioural Analysis so she sort of threw all of this stuff at me and it was just you know whoa, but it was really good and she gave me something to work with, in a sense that I was actually doing something about it. So really, quite quickly, daisy got an appointment at the New common center at guys and thomas's, and she had a multi-disciplinary assessment and then quite labor intensive, isn't it?
Speaker 2:this is like four doctors assessing, yeah, so it's tough, the meeting and actually someone who read, someone who read raising daisy was going through exactly the same process as me with her six-year-old daughter, but 15 years later. And yeah, so it's a five hour. You're told it's going to be five hours, so they have three hours assessing Daisy and that's you know. You've got a pediatrician, an occupational therapist, a speech and language therapist, and there was someone else, but I can't remember who. And then I was interviewed during that time. Was someone else, but I can't remember who, and then I was interviewed during that time by someone else. This is really intensive, long questionnaire that I had to go through and it makes you think about everything that you've seen. That wasn't hadn't really worried me, but I think it must indicate something to them.
Speaker 2:You can't really tie it all together at that point it's unstructured yeah, and and little things, like I've been asked so many times about Daisy's birth.
Speaker 2:I still have no idea if anyone knows whether or not that is directly related to a diagnosis. I don't know, um, so yeah, so yeah, that was hard. So that was three hours of being interviewed and I went on my own. I don't know why I didn't, didn't think about taking Damien, and then they, they brought her out and we had a sort of half an hour break while they chatted, and then we sat and they gave me a, they gave me a sort of a verbal diagnosis and they basically said um, we, we're going to. They described what they'd seen and then they said we're going to give her a diagnosis of autism. We're not completely convinced that she meets all the criteria, but you will get more help if you have a diagnosis. Okay, so I think, I think there was something, there's something called the triad of impairments I don't know if they still use the same diagnostic criteria, um, and someone has to meet all all those three things.
Speaker 1:Can you remember what they are? They?
Speaker 2:are communication, social interaction and imagination.
Speaker 1:Okay.
Speaker 2:And the speech and language therapist said to me he was absolutely brutal in his delivery. He was brilliant but brutal, and so it's quite a lot to take on. But he said she had very poor social communication skills. But he said she had very poor social communication skills, very poor imagination, um and um what was the other thing she's got?
Speaker 1:and and she had sensory processing disorder. Okay, so wow, and at this point in time, are you? We'll come back to daisy, but let's talk about you. Know, from my bias as a new parent how are you feeling as a parent? How are you feeling? Are you questioning yourself what have I done? What is this my fault? Or, at the time, you know, you're just hit by this information? Or are you just still um, trying to get an answer?
Speaker 2:I think. I think it's quite hard to remember, but I think it just sent me reeling yeah.
Speaker 1:And I'm not saying there's anything to be at fault for, just to be clear. It's more about no, I think you definitely.
Speaker 2:I definitely wonder sometimes. You know, we don't know why people have autism. But then and it's easy to blame yourself but I think actually, if you look at the numbers of people and the people that I've met, you know it's no one's fault. It's just I don't know if it's genetic, I don't know if it's environmental, we don't know.
Speaker 1:I have an inclination which we can, we can discuss a bit later which, which, yeah, would love you to tear apart or to to resonate with. I don't either, but let, let's, let's carry on because it's, I think, very, really powerful hearing your. You know the journey that you went through. So, you, you had this mammoth assessment and they effectively tell you that she's got autism.
Speaker 2:Yeah.
Speaker 1:What's next? As a parent? What's what do you? What do you do to kind of give her what she needs to thrive?
Speaker 2:Well, it's so weird because in a way, you know, everything carries on as normal you know, it's just daily life and at home days you wouldn't think.
Speaker 2:You know she's just Daisy. You know she didn't notice that anything was wrong, it was just her and so, especially at that age because she was so young. But so we got a written report which was I think we've probably got that about 10 days, two weeks later, which was brilliant and it still stands today. I still use it. I was really one of the best things was the quality of the diagnosis that we got and the OT. They prioritized Daisy's needs for me. So they said OT was the key thing, that she needed occupational therapy, which I might talk about a bit. I mean at the time I thought occupational therapy was having a good chair to sit at as a desk or perhaps being able to do more functional things like cutting food. But it's so much more than that.
Speaker 2:And it's done so much for daisy, but, um, I've lost my train of thought now. Um, so so the occupational therapist came, went to see daisy in school yeah, um and gave recommendations to her teachers that would help her in in the classroom, and um then came to see us at home and just explained the diagnosis more to me yeah, this is really hard to actually understand. So you get this, this word autism but, it's meaning.
Speaker 2:It's absolutely meaningless. And you think how does that? I don't understand how you can see this. You know, I couldn't understand how they could tell me that Daisy had a really poor imagination.
Speaker 1:Yeah.
Speaker 2:You know so.
Speaker 1:It's imagination, it's taking instruction and then it's kind of motor skills. Is that the kind of three things that they look out for? Is that right? The triad of impairments is communication.
Speaker 2:Communication so your verbal if you're verbal or non-verbal and the quality of your speech. So daisy's speech, for example. She had quite good language skills. So she knew the words, but the content of her speech was random and off and it could be very repetitive. She had favorite subjects, um, and sometimes you just think what are you talking about? But but actually the words that she was using were quite sophisticated, so she used her language to cover up does, does that make?
Speaker 2:sense her communications difficulties, but then you will have children who are entirely non-verbal or whatever. So it's just how you you use words, yeah, and then social interaction. So eye contact do you, do you connect with other people, do you engage with them? And then your creative imagination, and I think that that the way they diagnosed that was to watch daisy playing and to give you know, to see whether she generated any ideas, or they had to spoon feed her all of the ideas. That's what I imagine it was, does that?
Speaker 1:make sense. Yeah, yeah, no, that does make sense. And how was Daisy's education therefore adjusted?
Speaker 2:thereafter. So, hayley, this OT gave me four things which I still use to describe daisy that she was passive, she had poor social communication skills, poor creative imagination and poor fine and gross motor skills. Okay, and that sort of formed the basis of how I talked about her to everyone. And so at school we started going down the process of getting what was then known as a statement of special needs. It's now an EHCP, an educational health care plan. So now education and health are joined together, right, and that is a pretty grueling process. It's a long form and obviously resources then were tight. Now they're even tighter.
Speaker 2:I think it's very hard to get and you're basically describing your child in the worst possible terms. So the SENCO at school said to to me this is going to be tough and you're not going to recognize what I want us to say about daisy. It's going to be hard for you to hear, but you you need to do this to be able to get the help. Um, and you know I had to write her history, everything that I had observed about her. She was obsessed by an educational psychologist. We had OT reports, I think, probably speech and language reports, and we had her diagnosis from guys and at the end of this process which probably took I don't know, probably took half a term for us to put it all together she was given 15 hours extra help a week, so one-to-one help in the classroom, right? I then learned that the school gets no money for that, so the school has to fund that first 15 hours. So really, daisy doesn't get that much, I'm thinking, because they're going to have to eke it away from other children, which they're not going to really do. So we appealed and she got 20 hours.
Speaker 2:Even then I had an argument with the headmaster about who you know the help that Daisy would be getting in school and how that was going to be shared with other children, because it's up to the school how they spend that money, which I felt quite aggrieved at at the time because I had put so much into getting support for the school. Anyway, I sort of quickly worked out that you need to work with the school. There's no point in going up against them, and so I definitely learned to compromise. You know what I thought Daisy should have? Um, she wouldn't necessarily get. That didn't mean that I wouldn't ask for it, but yeah, um, you know it was a and it was a constant fight, but they were on the whole.
Speaker 1:Her primary school was amazing yeah, and getting the diagnosis is important, right?
Speaker 2:uh, if you don't know, then I, I, I think it's so, it's so important. And it and it described you know it describes daisy t, so her her full diagnosis with was autism, a mild learning difficulty and developmental coordination disorder, okay, and she also has something called cyclical vomiting, so she's sick every two weeks. That's meaning, that's meaningless. As a parent, you don't understand what any of those things mean in for your child and someone with autism. You can have such different presentations of autism. Um, so to have it broken down and to have your child described and to understand what they struggle with and what their strengths are, it's just, it's just critical you, otherwise their behavior makes no sense to you at all and you get cross about things that they do when it's not their fault.
Speaker 1:As a parent, it's a real learning curve to understand yeah, and it must be so hard to disentangle what is just irritating child behavior. Yeah, stop being a child. Yeah, grow up a bit or whatever versus this is part of your diagnosis completely and then as she got older.
Speaker 2:What do you push on and what?
Speaker 1:do you?
Speaker 2:hold back on, because you know there are things that she finds really difficult and it's not fair to hold her to the same criteria as everyone else. But at the same time she's got to learn to function. You know I want her to have a successful life and so she does need to be pushed. So it's finding that balance all the time. And you know I'm sure Daisy will tell you we've got it balance all the time and I'm you know I'm sure we got it right. I'm sure daisy will tell you we got it wrong all the time. But um, um, you, you learn and and you and gradually your child makes more, or anyway. For me daisy made more and more sense and the more people she worked with and the more people explain things to me and they're really quite.
Speaker 2:They're quite complicated, biological or physiological, I don't know what, how you describe them. They're quite complicated processes that you have to understand. You know the whole. I had no idea that, whether or not you crawled, you know the develop, the stages of development that you have to go through and you have to crawl. You have to. You know you have to roll and you have to sit up and you have to go through and you have to crawl.
Speaker 1:You have, you know you have to roll and you have to sit up and you have to crawl, but using the right order of your right, yeah you know, and people can tell so much from all of that anyway, um my, my challenge for me is I I kind of I'm very skeptical of these, this research or you know this is, if you're not crawling at this age, you're behind, or if you're, you know, this is a checkbox for that, and so I would I think that's fine, I would have been exactly the same, and and I, I and I was.
Speaker 2:This is a nonsense. You I grew up in, you know, at a time when this sort of thing just didn't, it didn't enter anyone's head and we didn't have the level of information or it wasn't applied in that way.
Speaker 1:She's three, just you know. Get off my case. What are you talking about?
Speaker 2:She's fine, she's going to catch up, it's going to be fine, yeah, no, I yeah fine, um, yeah, no, I mean, I was exactly the same. So I think that that attitude is is fine until you've got a child.
Speaker 1:That falls beneath that and and they really are affected so it sounds like the diagnosis process, the actual getting a diagnosis process, is very robust. You've got four people, you've got people. It takes five hours, you're, you're grilled, she's observed by three professionals and and but it's getting there. Knowing that, is that right, if? Or are there many people who just are undiagnosed, even having having they would remain undiagnosed if they had gone through that process no, I don't think you've gone through that process.
Speaker 2:You would, you you would know whether what was going on, um, but I think you have to be quite serious to get to that, to that place, and no, I think that the diagnostic process. Now my observation is that it's completely unethical.
Speaker 1:Oh, wow.
Speaker 2:Okay, I think that parents can influence it either way, so they can say my child has this or they don't, and they can influence it in ways that they shouldn't be able to. I think far too many people are being diagnosed. Go for it. I don't know if I think far too many people are being diagnosed.
Speaker 1:Go for it.
Speaker 2:I don't know if I think far too many people. It's not for me to say that, but I think that it's.
Speaker 1:There's definitely a. We'll come on to the macro mental health discussion for sure, I'd love to just come back to Daisy. Yes, go on, I'd love to just come back to Daisy.
Speaker 1:Yes, go on. Can you talk about her education, therefore, post-diagnosis, after you've had these battles and are now considerably working with the schools, and how she's nearly finishing school now? So, now that you entered steady state, what's it been like for her and what is she kind of um, where does she get excitement? Where she thrive? I know she's. She's got a phenomenal memory and she loves watching friends and and she does lots of normal things that all of us do. And I've just done something and said the word normal, which I'm gonna no, no, no, don't worry, that's fine, yeah people.
Speaker 2:So, um, yeah, so okay. So in primary school she had a teaching assistant and she had some, so she had a lot of support in the classroom and that teaching assistant also worked with other children, so she had other groups that she worked with and I used to get very cross about this, thinking it's Daisy's resource, it shouldn't be shared, but actually she really benefited because she was doing things with friends, which was important. It was really really important. Um, so she was fine until year five and then year six in the state system. So you with me on age so they were talking about 10 or 11 they have SATs, which is how the government measures the performance of a primary school.
Speaker 2:So, they don't matter to the child in the slightest, but they really do matter to the school. And she was at an outstanding school and so they really ramped up the pressure. And Daisy, when she's under excess pressure, really doesn't perform well, and her cyclical vomiting got much worse. So she was out of school a lot and in the end, after a fight with school, I got her taken out of sats and she just used to go and do gardening and things like that with with um, with year two children and she was much happier, and it's fine she was. She was well again. Um, her primary school was adamant that she should stay in mainstream education.
Speaker 1:Why do you think that is I?
Speaker 2:suspect, because the schools in Lambeth, which is where we live, the special schools in Lambeth, were completely wrong for Daisy and were for children with much more severe needs. So, unless you go privately, um, but I think even then the gap between her and her peer group wasn't it wasn't, it still wasn't that enormous and I think that they thought that she could, she would be able to, you know, with a bit of pushing yeah, do you do this.
Speaker 2:Dreaded exams that they think are important yeah, it matters to them I think, I think the first time someone said that she wouldn't, might not, do gcses, and you know, you go through stages, you sort of catch up with where she was, and then someone would make another prediction about the future and you just, I would, anyway, I would gulp. And I think someone, maybe year around, year four, year five, said I don't know she'll do GCSEs and thinking, wow, that's quite, it's quite. You know, it took me a long time. You always think that your child is going to. You know you'll get there.
Speaker 1:Yeah.
Speaker 2:So I had to sort of adjust my own expectations, I think. So what did you ask? So she went to a secondary girls school really good. So we looked around at different options and in the state, everything is judged by academic performance. There isn't, there aren't any good schools that are not academic, because they're all judged by their GCSE and a level results. So we found a school and everyone advises you to find a school with a good special needs coordinator, a good senko um. So we found this school. They contested daisy. They said we can't, we can't take her, which is sort of illegal. Anyway, we fought it and the count and lambeth gave her 30 hours, so they upped her right quota of help from 20 to 30.
Speaker 2:um, and she went. It's a. You know it was daunting, it was a big deal for her and I don't think that we probably appreciated how hard it was. But moving into year, I think in year seven she started, you know, her cyclical vomiting. She would be ill for much longer, trying to get out, I think partly trying to get out of school. And so we, by the summer term I think it was year 7, we had to she was put on a part time timetable just to manage her emotionally and what was it about school in particular?
Speaker 1:was it the social side? Was it the learning? Was it about school in particular? Was it the social side? Was it the rote learning? Was it the sitting in class and mindlessly following instructions?
Speaker 2:I think so, the journey to school. She was commuting into Victoria, which she did with us, but all children from 11 onwards in London go by themselves on the on public transport. But we took her, um, uh, I think it's the number of people, the sheer size of the school, um, and you're very young when you're 11 and you're at school with 18 year olds, um, I think it was the pace and the difficulty of the curriculum that she was completely out of her depth with and I think gradually, the gap between her and her peer group started to widen. She had this amazing little girl who helped her a lot to begin with, but then by year eight, year nine, nine, she was naturally starting to spread her wings and leaving daisy behind, and I think daisy found that very difficult, um, and so I think she hit year.
Speaker 1:She was about to go into year nine and um this is 13 14, was it year nine is 13 14 yeah, when girls become quite challenged, it's quite a challenging year for girls.
Speaker 2:I think they've become quite difficult socially and you know that for someone with communications difficulties anyway is difficult, you know, it becomes really hard and, um, I think we were just hitting COVID as well, and so I think that's when the realisation dropped that we needed to move her to a special school. Okay, so I looked around schools in Lambeth. There were three of them, and none of them they were very male, right, the ethnic mix am I allowed to say that Is. You know, she probably would have been the only, she would have been the only white British girl in, and I there's nothing wrong with that, but I think it would have made things harder for her. You know, things that are already hard even harder, yeah, um, and so I felt very strongly that that that was not an option.
Speaker 2:Uh and um, then I looked at this school. I looked at lots of schools, but, um, this school blossom house in west london, and I had a meeting with the speech and language therapist and everything they said to me made complete sense about Daisy and I mean, that's what I went with. So that's what I went with. You know, they totally understood her, from observing her and from her diagnosis, and it just felt, you know, other schools had said we don't take children with autism Most ridiculous thing to say. Schools had said we don't take children with autism, most ridiculous thing to say, um, uh, you know, and they just didn't show any sort of um, alignment with daisy, yeah, and there's no point in forcing a situation. You know, I would rather have kept her at home and educated her at home. Yeah, then put her into another environment that just really didn't suit her. Um, and blossom was, I mean, at that, it was okay, she started up. We had to go through tribunal. That's a whole another story um one journey.
Speaker 1:Yeah, yeah, I'm sorry. No, it's fine. No, but honestly, like what? What? What is so important for people to understand is that you're coming up against a system that's just not designed for it's really not anything beyond average or like the. This this, this perception of of the norm yeah and it's a total failure. Yeah, which which I hope conversations like this will kind of do a small part to sort of over time address. But you're, you're getting across this, this, everything's a battle and it's a fight and it doesn't.
Speaker 2:It doesn't have to be, and I and I think what's I was thinking on the way here what's really really so unfair is, is that your child's life chances depend on your financial situation and your ability to articulate an argument and so and to push and fight and to know how to work the system, and that's really, I mean, that's so manifestly unfair. I mean, I'm sure there are children who are far, who need far more help than daisy um, but for whatever reason, because their parents don't know how to work the system, or they don't know how to fill in the forms, or they don't know how to fight people, or they can't afford. You know we we don't have enormous amounts of money, but yeah, the bandwidth to cut it, yeah, if you have nothing to do.
Speaker 2:You know it. It's awful. And then I? It makes me feel sick thinking about how your options and your choices narrow for your child.
Speaker 1:But you got through the tribunal.
Speaker 2:So we went to tribunal and that's a whole different thing. You have to get a lot of reports. It's a really expensive process to go through. We used lawyers who were amazing, and you're really nervous because you know, if you don't get what you want, you're, you don't know what the hell you're going to do with your child and so you need lawyers to get your, you need lawyers to get your daughter into school.
Speaker 1:It's like and the word like tribunal it's.
Speaker 2:This is all kind of criminal justice sort of type language there's a firm they're called um oh gosh, send legal. Special education needs legal. And the woman, melinda who, who handled our case and she set them up.
Speaker 2:She set up the company 20 years ago when she had to fight for her own son and she was amazing and she just said just do what I say and you'll be fine, um, which involved using her educational, psychologist, occupational therapist, speech and language therapist all of them to get reports and assessments on daisy. So, and and what's so frustrating about it, I think, is that the lawyer that lambeth put up in the end was not briefed. You know, it's such a scandal because the council is fighting these cases all the time, but they, they can't win them, um, and that money should be used in such a much better way than it than it is yeah now, um, anyway, they are in the cycle that they're in and and that's the way it will keep going.
Speaker 2:And it's hard to with the education system, what you were saying. It's hard to see how it's going to change because we just don't have the resource to put into it, to make it specialized well, I I what my inclination is.
Speaker 1:It's not a resource issue, it's it's a culture and mindset problem. Resources are obviously scarce, but you know the fact that there isn't this tolerance of. The challenge, I guess, with something like autism and correct me if I'm wrong is that there's a, there's no one set of one size fits all.
Speaker 1:One side some autistic children will have some things, others will have others, and so if you're, if you're a school that you know any education is having private, public, whatever it is. That's just you know you want to. You want a scalable operating system that is um as utilisable across as many kids as possible, without deviating from that.
Speaker 2:I mean, if I look at my children's day school now, they've got classes of over 30 and they've got to get them through GCSEs they just simply don't have as it is. They're scraping the barrel for money. They just simply don't have the money to be able to. I agree with you. I think there is a whole mind, there is a whole mindset thing and there is an ideal solution which could be much better yeah but I don't know if mainstream school is where daisy really should have been, you know, and she ended up.
Speaker 2:She ended up at blossom, where she was in a class of five. Um, she had the most amazing teacher who just transformed everything and I think in retrospect she was quite traumatized from her experience at secondary school. In a way, I think it's really good that she did it. Yeah, because it gave her an experience. In a way, I think it's really good that she did it because it gave her an experience that she can refer back to now, whereas if she'd gone when she was younger, she wouldn't have had that experience and it might be harder to get back into that. But I do think it was quite traumatic. I certainly found it really traumatic. I found it really hard.
Speaker 1:Yeah, it was awful and how's she doing now?
Speaker 2:so now is that am I?
Speaker 1:skipping over some important stuff no.
Speaker 2:So she had no, I don't think so. So, um, she had a sort of 18 months at blossom house and then she went into the senior school and she's now she she's now part-time at college doing animal care and part-time at Blossom House, so she's in her second year of doing that, which means that she gets to sort of level two. Um, I don't know if that means that it doesn't mean anything to me, that she's on a totally different trajectory, um, and she's managed really well with that. But I don't think educational environments are she's not suited to them. I think they make her very anxious yeah she doesn't find them easy.
Speaker 2:She operates so much better out of them, um, and she doesn't want to work with animals, so so she doesn't. She doesn't want to work with animals. She always liked dogs, right, she loves no yeah, I think, but I think you know mucking out all day, or whatever is not what she wants to be doing, so she's going to stop and we're going to do.
Speaker 2:She's got one more year at school so she'll be doing therapies in school and work placements outside school. So it's really teaching her to work and um supporting her in a working environment so she can do what things that she wants to do. Yeah, and I think her environment is much more important than than what she's doing, or at least as important. So being in a big organisation with lots of people is not the right place for her. She needs to be in small, cosy, friendly places.
Speaker 1:I think people elide or confuse education and learning as the same thing. No, totally not, or formal education and learning as the same thing, or formal education, education and learning and being curious and expanding yourself, as you know, as what is education? It's not turning up with 30 other people and taking exams, and it is for some people and you've got to go through it, but for I think there's lots of us who just you know, you used a term earlier independent education plan.
Speaker 1:Yeah, in an ideal world, I think everyone should have, that would have that, uh, you know, once we can crack this nut of of, there's no one size fits all. Maybe some people are good in big groups and that's how they're going to thrive and learn and they need to feed off that. Other people need to be in more intimate settings for certain subjects. You know, it's just like when we're not even like scratching the surface and I hope that if we can change our mindset with with things like autism, we can.
Speaker 2:We can be on the journey to getting that yeah, getting that in place. I just don't see how I. I just I mean maybe I'm too steeped in the system and not not thinking creatively enough. I just don't see how the system as it stands now is going to be able to. And you know already this year you know friends of mine who are trying to get their child into secondary school is they're so oversubscribed and so they're not getting their first choices. Yeah, I mean the system is really creaking and and london is so expensive that teachers can't afford to live here. You know there's so many issues going on for them.
Speaker 1:I'm not going to bore listeners with Georgism, which I'm going to save for future episodes, but I think, yeah, I absolutely agree Education with a capital E needs to be torn apart. Redone, because it's based on a 19th century factory floor model.
Speaker 2:You got the bell you clock in?
Speaker 1:yeah, it's designed to keep people out of the way, kids out of the way, whilst the parents go off and work yeah, and and our children are not being prepared for the life at all.
Speaker 2:I mean, I look at the boys and I think you know you don't do anything around ai or technology. You've got no sense of what you're coming into in the workplace yeah, but there's a.
Speaker 1:I'm trying to go through podcasts without referring to nassim teleb, but I've failed again. But there's a teleb quote about you never hire an a grade student unless the job is to take exams and it's obviously he's being he's being facetious. Obviously hire a grade students if you need to, but you know exam taking and rote learning is not how the real world works and my husband.
Speaker 2:They don't employ graduates anymore because, you know, unless you're getting the top tier, there are only a few of us who should really be going with. My university degree was completely ridiculous, yeah yeah, no, I mean, and what?
Speaker 1:what we're having is kids. Now I mean this is an extreme example for the, for the certain kind of part of the population. But they're getting into, let's say, harvard, they're getting the acceptance letter and they're going to companies and going, look, I mean I got in.
Speaker 2:Yes, I don't want to go, just take me, but I can get is the value of going to university. Is almost just saying I can get in I think universities need to be really careful about what they're delivering, because they can't prove the impact that they have on your earning capacity.
Speaker 1:After no, I think it becomes a much more I think, I think, um, yeah, before we dive into perceptions around autism, I'd love to therefore ask you what, what made you want to start the blog? Is it Substack Medium?
Speaker 2:It's on Substack. Yes, Substack is raising Daisy.
Speaker 1:What made you want to start that?
Speaker 2:So I think a few things, but I think the most important thing is the importance of diagnosis, particularly in younger children, because if I look at Daisy, she is unrecognizable now, today, than from the child that she was when she was first diagnosed.
Speaker 1:In what way?
Speaker 2:Oh, if you met her you wouldn't know. I mean, she's funny, she's engaged, she's motivated, she's lovely, she's awesome. I mean she's always been awesome and I know I'm her mum, but she's great.
Speaker 1:She can be more of herself she can be more of herself.
Speaker 2:She's babysitting. She earns quite a lot of money babysitting. She sells all her clothes on Vinted. You know it's really difficult because I talk about her in such a negative way, um, and had the difficulties and challenges she's had, but she's she's incredibly resilient. You know she has had to work. You know it's been hard for me, but it's been much harder for her and some of the things that she's had to go through and she experiences and you know I think what you to your point about education, if you don't go down the mainstream, it's very difficult because you're watching all your contemporaries doing this thing in your teenage years. When you're feeling you know you've got all your teenage feelings anyway and you're doing something totally different and that makes it very difficult to connect with them. You already feel separated and isolated. And when we set so much store by exam results, if you're never going to get those exam results, that's quite a difficult thing to be aware of.
Speaker 1:Yeah, and we intuit, because life's complicated enough as it is want to follow the path of least resistance, and you know you'd prefer your teenager not to be expelled or whatever it is, or take up smoking, or you know, because it's he makes your life easier.
Speaker 2:Exactly I think um, yeah, the girls that just stick their hands up sorry, I always use girls, but but you know who? Just just do as they're told you. Actually, you want a bit of punch and a bit of fight in a child.
Speaker 1:Yeah, well, that's the kind of core theme of this podcast and you know I always go back to that Picasso quote. Well, picasso wasn't a very nice man, but one thing he said which resonates is you know, all children are artists, it's? Can you keep them that way? Yes, and their creativity, yeah. And we kind of smother. Orwell's got a great term, term of phrase called smother. Most people are smothered by drudgery.
Speaker 2:Yes, because your workplace reflects your it's. So you're beaten down, aren't you? Yeah?
Speaker 1:And how have you so? How have you found the process of writing the blog? Has it been cathartic? Has it been introspective? Have you learned things that you didn't realize? You knew in your head from putting it to paper?
Speaker 2:So I think the stuff that I've written so far has been it's sort of been a story that I formed in my head over a long time and and I've hit a bit of a wall with it, because now I'm talking about much harder things, um, which require more, more thought. Um, it has been really cathartic and I sort of want people to know because it's fucking hard. It's really hard as a mother or a parent going going through this. You know, I, we would get thank you letters from friends, children, and I just think, god, are you doing this deliberately? Because I can just see the difference between what your child you know, or you'd hear someone talking about their child doing something, or them worrying about something, and you just think, are you seriously worrying about this? This is just such a stupid thing to be worrying about and that, and so it's quite isolating and it um have you found people?
Speaker 1:because you've done some interviews of other parents yes who've had, you know, children with autism or have children with autism.
Speaker 2:So has that, has that been a nice thing to kind of be able to find, find others who's been through a similar journey um, uh, yes, totally um, but we're all so different and we all take it differently and we all have different experiences, obviously, um, and so you can never completely understand someone else's, but I think mostly it's just how amazing parents are really, when the two the two that I've done, particularly they've had. You know, it's been really challenging for them and it's awe-inspiring to see how amazingly they've adapted and coped and what they've learned and what it's done for them, how they've grown through the whole process I think the what I think that the world needs to catch up to your journeys and experiences I wouldn't change, change any of it.
Speaker 2:I've learned so much, I've grown so much as a woman and I don't think anything else could have taught me this. Yeah, it's totally changed me.
Speaker 1:Here's my Some of the things that the sense of frustration I got from some of the experiences that you've been through. Um, here's my take. It's the full time is is autism spectrum disorder right and it's classified as a disability is it. I don't think it's a disorder or disability at all no it is just, it is something yeah it's, and we need to stop thinking of it as that, and I was kind of scratching my head about this.
Speaker 1:You know, there has to be some sort of evolutionary rationale to people with why it's happening, people with autism existing, and maybe there are things that in your environment or your nurture that have triggered them. Maybe you were born with it, who knows? But have you heard of the explore-exploit trade-off that bees have? Have you heard about this? No, so it's fascinating. 20% of bees in a hive or a population do not obey the waggle dance, and the waggle dance is where bees tell each other where their pollen is. Okay, so 80% of bees do the waggle?
Speaker 1:dance and they exploit 20% of bees, go off and have low hit rate, low success, but high impact journeys, that they ignore the other bees and they go off because if everyone just exploited, the hive would run out of pollen and it would die. Okay, so you needed some people who just didn't see, didn't pick translated to human terms didn't pick up on social cues or weren't overly obsessed about social context. Yeah, so that the hive could survive and find new sources of pollen. Yeah, new sources of um, of, of thriving. Yeah, and I I feel like you know we equate normal with majority. So the more percent, the higher percentage of someone, of a population, is a certain way, that is normal and that's not. That's maybe a standalone normal, but over time, over cycles of survival, evolutionary survival, you normal is actually everyone, because you need the explorers and the I'm not saying the difference.
Speaker 1:To push to, push to see things in a different and and, and you know so. There's two reasons why I don't think it's disability. One is that you know you both you and damien have said like I've learned so much from daisy, and I remember reading, I can't who was the other, apparently. Uh, uh, yeah. Henning and Irene's son Jesper yeah, you know we've we learned a lot from him, because he thinks and behaves not like us. It's just another way of being a human um, they were extraordinary, those two absolutely extraordinary.
Speaker 2:But it's a much easier thing in Norway because there's so much money in the system. So it go on.
Speaker 1:So it's completely normal being autistic, because you need people. I'm talking purely scientifically, this is just a theory. You need people like that because they see things in a different way, and you've learned so much from Daisy. There's a second reason why I don't think it's disability. I think a disability is something that 100 of people, if they had it, would choose not to have it, and I remember reading the blog that daisy contributed to, which said this is just who I am like as part of I'm. You know, that's not that's not a change it yeah, so that.
Speaker 1:So we need to stop thinking of it once we, and then we can accommodate it, and then we realize that there are people like this and people like that.
Speaker 2:Yeah, some people that can do exams and can do the drudgery and do the turning up and the clocking it, and some other people that can't I couldn't agree with you more, but, if I can say this, I think you're quite extraordinary and having that attitude, I think most people want to conform to the group Right. And I think there's something quite interesting. My father had a very derogatory view of disability.
Speaker 1:Yeah.
Speaker 2:And I think that that was one of the reasons that I found it so hard maybe, Whereas if we can normally, you know, if we're brought up to believe there's an issue with it, then it makes it really hard for us when it happens to us.
Speaker 2:But if it's fine and we just accept everyone and this is what happens in Norway. Henning said Jesper is really taken into the community. Oh, no, immigrants in Norway, he said, they're much more welcoming. You know, if you go into an immigrant shop they're, they're lovely with, yes, but they'll give him sweets and they'll they understand, they're much more open, because those societies look after everyone, they bring in everyone, they don't ostracize, whereas we have a history of hiding people.
Speaker 2:People were locked up or they were, you know, separated from the rest of us I think there's something in that.
Speaker 1:I think, um, where I would probably um think there's something more to it in that, um, immigrants are and I'm sort of I'm gonna, I'm gonna, you know, use a position of personal experience or parental experience from this are different from the societies that they came from. So if Milton Friedman said, an immigrant is a natural entrepreneur, because they've decided to uproot, go somewhere else for some other experience, other opportunity, to capture opportunity elsewhere, and so I think they've got that entrepreneurial streak or they see things differently.
Speaker 1:Anyway, they can and so they can spot someone else who sees things differently and they chime and resonate. So maybe it's not where they're from. Yeah, it's. That person themselves is naturally has a much more open mind but perhaps yeah, I'm sure it's a bit of yeah so so yeah, you mentioned you that the, the generation above us and who who came before us, who are a bit more old school.
Speaker 2:You know there's no such thing as mental health yeah, and you just look at the language around it like retard or spastic or you know those sorts of words which still exist. They really exist, yeah.
Speaker 1:Look, school kids, especially school kids, are horrible. The whole point of being a teenager is to try, and you know you spend your time as a child and a toddler trying to express yourself. Then you try and conform and then hopefully, once you go into the world, you try and express yourself yourself again. But most people get trapped and smothered by drudgery. But we say we know kids can be cruel and I, and that's sad, but it's probably never going to change. Yeah, what? What was interesting was, um, some of the terminology that I'd know. I don't know if it was damien's dad or your dad or someone's someone, so forgive me but, like you know, I. There's three or four things you listed which would be, if you can remember, would be really useful to like. One was like oh, so and so's kids got autism and they're way worse than sophie. So don't worry, or like, at least it's not that bad order. That was one of them. The other one was I can't. Can you remember the? Can you remember the? I can't remember the list.
Speaker 2:I think I was. I was might have been a bit ranty, I sort of don't want to criticize other people because, on the whole, most people have been it's an education wonderful but but still, people will say things to you that you just like oh, that's quite, and. But I'm sure I do it to other people as well. Um, you know, it's a natural thing. I'm just particularly sensitive around this, but I think I don't know, people always underestimate Daisy, but that's probably because of the way I talk about her.
Speaker 1:I can't remember what else I had on my list it's things that I would have thought or said, or I do you know I said it earlier. Like you know, I cut to, else I had on my list, but it's things that I would have thought or said, or I do you know I said it earlier. Like you know, I cut to and I've got my notes. Please interrupt me or tell me if I've made a classic mistake.
Speaker 2:No, no you haven't.
Speaker 1:But because we, what we create, you know we're all, you know we're all tribal and you know you, it generally doesn't. Do you do you any favors not to not to take social cues, whether it's in the, in the village, in the, in the cave or or today?
Speaker 2:I think yes, um but you need people.
Speaker 1:Who. Who? What was the? Can you?
Speaker 2:when you've got people like einstein, I mean in history if you look at people who we think had autism, you know they're responsible for all the big developments and so, yes, you do need. You need the autistic, we need the autistic brain to develop temple grandin, have you ever come across her?
Speaker 1:only through your. So can you, can you just explain to people who she? I? I had a. I I went through the link that you kindly put in your blog and I started doing a deep dive, but can you tell people? So she was very good.
Speaker 2:She's an American woman. She's quite old now, sort of in her 80s I think, and she was severely autistic, very clever and had really quite profound sensory needs. She couldn't bear being hugged. She also had an extremely um uh supportive mother and aunt who taught her everything. So I think things like her facial expressions and bear in mind she was a child in the 50s, so it was quite unusual for and sympathy.
Speaker 1:Sympathy.
Speaker 2:Yeah to have that. And her aunt explained to her that she wasn't smiling and she thought she was smiling. It's that sort of help that she got. But she hated being hugged by others, she hated human contact. And yet she developed this contraption when she was at university to compress herself in this thing, and it just calmed her system down.
Speaker 2:And then for her dissertation or her thesis, she started researching animals, cattle specifically. She realized when they went to be slaughtered, they were dipped and they would just be um, they would be herded in in a mass and then literally dropped into the water and then out, and a lot of them died in the process, which means that they're useless. You can't. You can't use them. And so she developed this system, having observed them in the wild, watching how they moved in a I think, in an anti-clockwise direction as the herd, and when they went down to drink water they went down on a gradual slope and that gave them confidence. And so so she built this thing for farmers in america, which now I think most of them use and is made a lot of money for herself. But the way that she talks about autism is just brilliant and she's very inspirational, I think yeah she talks about it being a difference uh, yeah, difference, not a disability.
Speaker 2:And um, she talks about the importance of the autistic brain. And, yeah, she's.
Speaker 1:I think she's really helpful yeah and it's really challenging because people maybe then are trying to be kind and they're like, maybe they're really, they're all of a sudden your rain man, maybe, like you know, oh, you've autistic, or maybe maybe they've really got special powers. In a way, it's like no, no, no, that's not what autistic is.
Speaker 2:And some people like Jesper he had a who you had in the blog he's been full-time living in in um, in care, in care, so it's, it's a big he's a classic example of how, when he we were talking before we started filming about, um, uh, the importance of an environment for someone, and when he was at home, um, as a very young child, he was severely stressed and didn't talk his.
Speaker 2:His language was very slow to develop and his parents were run ragged. I don't know how they did it, but they both have full-time jobs.
Speaker 1:He collapsed. He and Henning collapsed yeah exactly.
Speaker 2:But Jesper then, to give them some respite, was put into a home and he started talking and I think he was six at the time and he suddenly they realized that actually maybe the home was a much better place for him to be than at home with them, because he had the care and support that he needed from dedicated professionals which they, as full-time working parents, just couldn't give him.
Speaker 2:I can't begin to imagine how awful and I think irene talked in that interview about how she feels this profound sense of guilt that she doesn't have him at home yeah, because you feel like you must a part of you as a parent, feel like you failed, yes, by having your child not live, not being able to do it.
Speaker 2:And yet she can also see that if she'd had him at home, it would have wrecked the whole family. You know she's got two other sons. She couldn't do it to them, yeah, and you know, I don't think their marriage would have survived and I think, as a mother, she would have gone on and on, and on and on and on killing herself, and henning just said no, actually we, we've got to do this. And she has seen how Jasper has thrived away from home. But the, the Norwegians, because of their sovereign wealth fund, they, they have so much money yeah that they can give to individuals, and Irene and Henning have both contributed.
Speaker 2:So now I think he's 22 or 23 and he lives in his own flat.
Speaker 1:Wow.
Speaker 2:With people who care for him every day, and there's another girl who he grew up with who is also there as well. Yeah, and so he has a really he has a great life, yeah, or as good as it can be for him be compared to what would have happened.
Speaker 1:How difficult, yeah, yeah. So how has daisy been um with the blog and things like this?
Speaker 2:I think she's been completely amazing. Yeah, so, um, because we're talking about some things that most of us wouldn't necessarily want everyone else to know about, and I'm saying some pretty, you know, I talk about how hard I found it, which I don't think it is hard for her to hear, because I think, because I will always put it in context for her I mean, we're very close and we talk all the time, but, no, I think she's amazing. I've just written a piece on sensory processing disorder which sort of lists all the things that she finds difficult, and I think that that slightly made her gull, but also I think that me writing about it gives her a bit of a voice, yeah, and it shows other people what she has to contend with. So if she turns up at a restaurant with 20 other people and she's quite quiet, you know she wants other people to understand what her experience is, is like in that situation.
Speaker 2:Um, and I think the more that people talk, I think the re, the more that people talk about autism, you know, the more the stigma and the shame is removed from it and the embarrassment and the difficulty, which makes it easier for people who are diagnosed or who have children who are diagnosed we need to fast track that some way get rid of this it's definitely, definitely happening yeah does.
Speaker 1:Is the? Is there an issue with it becoming a bit trendy, the sort of?
Speaker 2:neurodivergent. What it's? I'm neurodivergent, I'm time blind I'm and I can get quite cross. This is what I meant about over diagnosis. I think there is over diagnosis. I think that there is an ethical diagnosis, and I think the problem with that is is that care and treatment for people who really need it gets diverted away, and that's what makes me angry and it's part is their parents that are trying to gain the system to get a bit of that.
Speaker 1:Is it dyslexia? Dyslexia? Who?
Speaker 2:think they're a bit quirky and and I'm I'm not belittling anyone's except, but I think if you, there is a cut-off line with people who can't function and they are the people who need the help, if yeah.
Speaker 1:So what would you say to, to someone who is a parent who thinks or would like to um, you know, find out if their child has, potentially has, autism?
Speaker 2:so most parents I've come across with children who are younger, who think there is an issue, I'd say they're right, because you don't have that instinct, okay for nothing, or there's definitely something going on which they need to get to the bottom of, and quite often it shows up in the child's distress and and that people really need to understand that. But I, you know, just because your child is struggling at school doesn't necessarily mean that they merit the same level of support. That daisy did just right, does that?
Speaker 1:yeah, there is a distinction and it's cruel, but the you know you can't, we can't help everyone to the same extent yeah, well, I think hopefully, you know, maybe in 100 years education systems will will catch up with being able to be less cookie cutter yes, I really, but your advice is, if you think you've got a three-year-old or four or five-year-old that might have autism, to get it. We'll get it checked.
Speaker 2:So your first point of protocol is going to the gp yeah but I don't necessarily think gps are particularly trained in it and then to get a referral somewhere to get the diagnosis. There are a lot of private diagnoses going on. I don't know, but my instinct is that I don't think they're great. I think we were really lucky to get get to the newcomer center. I and and really what you want is as much information and detail about your child and how to help them.
Speaker 1:Sounds the the process you went through sounds very robust it was.
Speaker 2:It was brilliant and they're a special autism part of guides and thomas and they were amazing. Yeah, they were amazing.
Speaker 1:So I tell you, what gives me hope is that let's take the um, excuse me, the concept of, or the term, the workplace. Now, people today and in, you know, 2024 people have very different workplaces. You know, some people code out of their garage, some people um travel, some people, you know, are in a cubicle processing insurance claims, um, or are working remotely, and so the workplace is a really divergent um set of set of things. But the term the workplace conjures up this image of drudgery, right of like the average of all of those things that no longer I think exists. Really like you can be a you know, you, a friend of mine, um, who who's got a daughter's uh 18, 19, she's, she's. You know terrible exams but phenomenally good at uh, drawing okay and may just skip uni.
Speaker 1:Goes go work somewhere like pixar or something like that and be because something you know but like it's not like a given you've got to go to university, you've got to go grad scheme, you've got to go whatever, do your time at mckinsey and then maybe, once you've pocketed your mortgage, you can think about expressing yourself as a brand and that's still a ruse, I think, isn't it?
Speaker 2:there are other.
Speaker 1:There are other, yeah and so, yeah, the education carries on through your whole life and learning carries on through your whole life, and so I think I hope that formal education, as for children, will have to just a, because it's creaking, as you say, at the seams and it's just cannot continue as it is with. We'll have to, and throwing money at the problem isn't going to help because it'll just swallow and swallow. I think it'll have to just rewrite itself and adjust to this new future that prepares people properly for the world and these kind of divergent ways of expressing yourself, and that way, I think, hopefully you will have, you'll be further down the road to every child having an iep and and or anyone in school.
Speaker 2:You know education at the moment is going down. You have to fit into these parallel lines and you know, mungo, my son is dyslexic, but he is not bad enough to get any help in school. He hates school but he has to do it, whereas bertie is quite clever, loves it. It's just born for school and you have children like that and children are not, and I can't remember where I was yeah but like yeah, if you can make your choices early on, then it's so hard as well, though, isn't it? Because you don't?
Speaker 1:a child develops while they're at school, so you don't want to be forced into making choices yeah, and making interventions that that are just a partly of getting in the way of just growing up, yes, learning to navigate.
Speaker 2:Sometimes it's good to stick at something you don't really enjoy. Oh it's so hard, it's so tough, it's a really difficult one to to answer, but I think your thing about and I realize this now this thing about um education being a lifelong thing. What you're really wanting to teach children is to carry on educating themselves and um broadening what they can do and learning, and and I imagine that that's what the next generation is going to have to do because their jobs are going to change- yeah so quickly in a way that we didn't have to adapt to.
Speaker 2:Yeah, there was a.
Speaker 1:I was reading I was reading um, there's this marketing advertising guru called Rory Sutherland.
Speaker 2:Yes, I did.
Speaker 1:Okay. So he's got this kind of wonderful book called Alchemy, but he also writes something called the Wiki man and one from like 12, 13 years ago. He was talking to a very kind of inspirational friend of his and they were having drinks and they're going around the table. If there's one thing you could give your child, what would it be? And one person goes, you know, enough to, you know, get a mortgage, enough to kind of go to whatever university they want. And then he went to this. The inspirational guy went if there's one thing I give my child would be a sense of wonder and like yeah, yeah, to retain that.
Speaker 1:And that's hopefully enough to kind of see us through.
Speaker 2:Sustain us, sustain us yeah.
Speaker 1:Rather than let it right. This is me now. This is my lot. I'm done. I'm going to keep going. It's doing the garden, or it's going on nice holidays or whatever it might be. As I think I forewarned you, I try to wrap up these podcasts with a closing question. I ask every guest something I call the, the long bet, and it's a bit of fun. Predictions are, you know, tax-free entertainment, nothing more. So they're nothing that you know people should be kept to um, but effectively, you have a 10-year time time frame to make a prediction of something or something that you would like to happen, something you think will happen, something you would like to happen, whether it's about autism or not anything. It can be completely random and it's just a bit of fun, so don't worry if it's.
Speaker 2:So I think the trajectory on autism is quite hopeful around special needs so what I? Was trajectory on autism is quite hopeful. I you know around special needs, so what I was going to say is um that the quality of our politicians and political debate gets much better than it is now okay, right does.
Speaker 1:That is that something you want to happen that's not something that I hope will happen.
Speaker 2:Yeah, because it feels so uh, it feels so low at the moment yeah and so hopeless um, I hope it becomes more hopeful, basically.
Speaker 1:My encouragement I can give, or positivity on that, is that politicians are generally the last to the party when it comes to understanding or getting on board with things. And that's not a bad thing, because they're like puppies going off their own tail and they'll go for the thing that's most expedient and they will get there, but they're not going to be the ones that are going to trailblaze. It's for all of us to make the decision easy for them. To package it up and make it.
Speaker 2:I don't know. I think we've got some pretty big questions at the moment that need answering answers, and those answers don't feel like they're particularly forthcoming no, I agree, um, but it it'll from a policy perspective at least, or for a research resourcing perspective.
Speaker 1:Um, if your perspective on the trajectory of this dialogue around, autism progresses the politicians will follow. They'll come to the party because it'll be expedient for them.
Speaker 2:I hope you're right, yeah.
Speaker 1:Is there anything else you want to get off your chest about the blog? No, and people can find the blog's called raising daisy yes um, if they google that, I'm sure they'll get to the url yeah, um, I think it's dot substack, dot, substack, um. So raising daisy stuff stack should get you there. Yeah, um, thank you so much, it's been an absolute blast I've really enjoyed it.
Speaker 2:I hope it was interesting. No, I've learned so much and it's been an absolute blast. I've really enjoyed it. I hope it was interesting.
Speaker 1:No, I've learned so much and it's actually, you know, it's been one I've been most nervous about and found hardest to prepare with. Normally, my notes are just three or four words, you know, and this is the more words I write, the the harder in terms of like well, it opens up so much yeah um, and, and I hope I've done an okay job of sort of trying to navigate this this good. Well, thank you, we'll speak again soon. You, you, you, you, you you.