How autistic is your child? | Kieran Rose

EPISODE TRANSCRIPT

Mark

Hello, and welcome to episode 48 of Neuroshambles. It is an unmitigated joy to have you aboard again, Neuroshamblers. Now before we start, I'm going to do a quick public service announcement to let you know that as it's December, I'm going to be taking my customary month away from Neuroshambles, so I can focus on steering my lot through the choppy waters of the festive season. If I'm honest, I could also do with a bit of a breather myself because, let's face it, managing a podcast, a full-time job, and a neurodivergent family is absolutely bonkers, and I'm knackered. So, my plan is to have a bit of downtime and a lot of mince pies, and then I can come back reinvigorated in the new year with a brand new episode. Before then, though, this week's episode is more than enough to keep you going, not only because it's the longest one so far, but also because if you're anything like me, my guest gives us a lot of things to think about. As well as a deep dive into the topic of the week, we also have some Neurodiversity Champions, tiny epic wins, and what the flip moments. So let's strap in and crack on with it.

SECTION INTRO

Meet the guest

Mark

I am really excited to record another episode with this week's guest because my chat with him in season two was genuinely an eye-opener to me, and I'm sure to many Neuroshambles listeners. Not only is he a neurodivergent parent of three neuro exceptional kids, he has dedicated himself to improving the lives of autistic people by raising awareness through his books, his research, his training, his consultancy and his public speaking. It's an absolute pleasure to be able to welcome you back. It's Kieran Rose. How are you doing, Kieran?

Kieran

I'm good, Mark. Thank you for having me back. I've been excited about talking to you all day long. So, and I don't usually feel like that about work.

Mark

Delightful. You are, genuinely, I'm nearly 50 episodes in. I'm approaching 50 episodes of Neuroshambles, and you are the first guest that has ever given me homework. You're like, oh, you might want to read this, this, this, and this. I was like, oh, okay. And like, great, fantastic. We now have to condense that. into this episode, but we'll give it a a good go.

Kieran

Oh, we will.

Mark

So before we start, it's useful for our Neuroshambles listeners to understand a little bit more about your setups. So if you could take us through the neurodivergency at play in your household, Kieran?

Kieran

That's an episode in itself. That is an episode in itself. Well, there's five of us to start with. So three children, all of whom are autistic. all of whom have various other co-occurring things going on. Some of those physical, some of those kind of bodily things and stuff. And then for myself, I'm Autistic, probably ADHD. I have hypermobile Ellis Danlos syndrome. And then my beautiful wife, who is autistic, but. Definitely ADHD forward. It marches ahead of her. So all kinds going on in your oh yeah yeah yeah yeah there's a there's a there's a proper mix and so a mix of different people needing different support at various different times as well which which makes Life is interesting.

Mark

Yeah, it's fun. Never a dull moment, as it is in my household. All right, so thanks for introducing me to yourself. Let's not waste time. With the chit chat, let's let's wade into this topic of the week because it's a it's a biggie.

SECTION INTRO

What's the topic of the week?

Mark

So I realize the title of this week's episode, How Autistic Is Your Child? Might be a bit contentious, particularly if you don't recognize that it's tongue-in-cheek. But it goes to the heart of what I think this topic is about, which is the fact that to many people, there's a perception that there are different levels. Of autism and a notion that maybe some kids are more autistic than others. And I'll be honest, this is one of the few topics where. I don't have a very firm grasp on how I actually feel about it. Like, I have mixed feelings, as I imagine many other parents of neurodivergent kids do. But I haven't quite been able to put my finger on why. And But maybe that's 'cause I'm only able to view it from my own lived experience. Maybe it's because it's such an incredibly nuanced issue, which definitely has people entrenched at either end of the debate. Or maybe it's simply just because I haven't had time to research it enough, but it's definitely something that I think is worthy of discussion. So I thought it would be really useful to speak to someone who I am a hundred percent sure has done a lot more thinking about it than me and writing about it and talking about it. So we can dissect what is Quite a sensitive subject, I think, and see if he can help me make a bit more sense of it. So, no pressure here, Kieran. Let's try and unpick this. I think the sort of the starting point for this was an experience I had with someone a couple of years ago who I was talking to, and I explained that I had autistic kids. And his response was, How severe are they? And immediately I tend to stop. I was like, Oh, I mean, and I didn't know how to respond. And it sort of betrayed a a way of thinking about autism that meant that he didn't really understand it. And it wasn't from a place of malice. Just to be clear, like he's he was a really nice guy, and I got on really well with him. But when he said that, it really kind of sort of stopped me in my tracks because I didn't know How to respond. Do you know what I mean?

Kieran

I do. I do. I absolutely do. Even when you said that, I winced.

Mark

It's horrible, isn't it? Because I could have gone, no, no, no, no, they're like, they're, no, they're all right, they're not like really autistic, which, like, was what he was getting at, right? But I I mean they are well autistic my kids just not in the way th that he was getting yeah yeah

Kieran

So there's two things kind of wrapped up in this, and I think this actually really goes to the very heart of this narrative. One of those things is stigma. about people's perceptions and biases and all of those things. And all of us are tainted by stigma in some way, shape or form. And all of our biases are. through a lens of stigma around certain things. We can't get away from that. We can reflect on that and learn about it and try and stop, but our initial thoughts are always kind of going to be touched by that. And then the second thing, which is a massive part of this. is everybody's talking about something that they don't really know what they're talking about.

Mark

Everybody, even everybody.

Kieran

So literally, so a tool that I use when I train professionals particularly. is the very, very first thing that I do is ask them to define autism. Go and write it down. Like, what does autism mean?

Mark

How long have you got?

Kieran

That's the thing. So, and I always say, say, don't go to the diagnostic criteria that tells you what it thinks autism is. Don't go to what charities tell you that they think autism is. is write down what you think that word means and you know what so many of them can't they these are professionals who are working within this field working with autistic people working with families working with autistic children and they can't even define the thing that pays their wages how do you actually technically define something which is written up in a diagnostic manual on three bullet points which is about somebody looking at someone else and deciding that something's going on inside them just by looking at them

Mark

They might have two meetings with them, Kieran.

Kieran

Well, do you know, but the problem is that I think I said this to you last time, and I think it's probably part of what met with your brain last time. Like, there's no such thing as autism. It doesn't exist. It is a construct. What's happening inside people is a very real thing. Autistic experience is a very real thing, but autism itself is a perception. It's an observation. It's an idea. And it's an idea which is really flawed and really problematic, which is why then we have people coming up to us and saying all sorts of stigmatized things or what level are you or how severe are you? you can't be autistic because you don't do x y z yeah because you're not contacting you yeah you're not dustin hoffman or you're not you're not the guy from the big bang theory or you know you don't look like my five-year-old child why would i look like your five-year-old child i'm 46 that would be really strange so we have all these kind of misperceptions wrapped around something And then people think they know what they're talking about and therefore start talking to you in that way. And you're like, hold on a minute. We're talking about two completely different things here. So everyone's ideas around this are flawed, problematic, and mostly made up, to be perfectly honest.

Mark

And we'll get into that, definitely.

Kieran

That's a very nuanced thing to take in.

Mark

Let's not start with that, Kieran. Let's build people up to it. You know, one of the questions I have is the word autistic too broad, too big an umbrella to actually be meaningful? And there's an analogy that I've used before on this podcast: if we went to the pub and you told me your mate was joining us and he's autistic. That wouldn't give me any more information about what to expect, about the person that was going to walk in. Right? So, like, if you'd have told me he was German, or if he was like really into death metal, or if he voted reform. I'd have at least some idea of what to expect as to who was going to walk into that door. But as it is, the word autism doesn't really d tell me enough. In an ideal world, I think this needs to be said, it shouldn't matter. Like, we should all be a lot more aware of the fact that, yes, different neurotypes exist and people in general, need to be treated with more tolerance and more understanding and more compassion. But we don't live in an ideal world So it's not really for me that I would need that. But for other people, it can be useful information if they don't know a great deal about autism because they might be more willing to make accommodations. For behavior that they might otherwise pass off as rude or weird. You know, let's say that your mate came in and he didn't make eye contact and he started talking over people and monologuing about the complete works of Eartha Kitt. Right. Then at least the person I'd want to hear that though. Yeah, totally. Yeah, that's why he's your mate. This is a really bad analogy because I'm excited about this stuff. But what I'm saying is then the person the other people in the room would then have a bit more context and go, ah, okay, he's autistic. So therefore, you know, it's not weird, it's just a different neurotype. I would love us to get to that level of not needing that and just going, well, you are a fascinating human in front of me and doesn't really matter how you're defined. I'm here for it. But as I say, people don't have that tolerance. No. And that understanding. No.

Kieran

So I'm going to say yes, it is too broad a label, but I'm probably going to answer it in a way which might surprise you.

Mark

Okay.

Kieran

So if my friend was coming in and my friend was black and I describe my friend as a black person. that wouldn't tell you anything about them other than their skin colour.

Mark

Yeah.

Kieran

So you then have to fill in all those gaps around your ideas and concepts around what. what who a black person is and what a black person looks like and who they are and so really when if we say that someone is autistic yes it is too broad a label it is a meaningless label in that kind of context But all labels are meaningless in that context because we have to go, and this means, you know? So you have to take that next step. So someone coming in and saying that they're ADHD, if you said someone was ADHD, what would that mean to that person? That might bring up a stereotype of someone who runs around at 400 miles an hour and talks non-stop and blah, blah, blah. But actually, that might not be how your friend. exists. So again, we've got this kind of problem where the labels that we use and the words that we have to describe people aren't the only thing that exists within that person. They are an autistic person and they might monologue. They might love Eartha Kitt. They might hate Eartha Kitt. They might talk about tanks. They might be interested in football. They might want to try all the different beers in the pub. So they're a human being that you're bringing into that context. So if we are talking to other people and saying, my friend is coming, they are autistic, the first question I would ask is. Why am I telling them that? For what purpose am I telling them?

Mark

Yeah, yeah, fundamentally, it's like heads up Just be aware that he's gonna present differently than you are probably expecting. Give him some leeway.

Kieran

You're already taking that extra step of yes, he is autistic and for him that means So it is too broad a label if you only use it within that context of I'm going to tell you because Autistic and not give you any other information whatsoever. Usually we take those extra steps like we describe anybody if they're coming in and.

Mark

they have a particular set of needs they might be a label that describes those needs but then we would go into the specifics of what those needs are so interestingly though i don't feel like people do that with their kids Possibly. You know, like heads up. They're going to eat while standing on a chair and they're going to wrap themselves around the curtain. And, you know, so you're going to need to be very specific. We don't really give that much instruction. And certainly, I think at school, the teachers probably don't have enough instruction. They just know that that kid's autistic. I think there's sometimes an assumption that that's enough. Yeah, as well. It's like you'll know what people know what it means.

Kieran

Yeah, yeah, yeah, because we've had like 20 years of autism awareness. Everyone's aware. No one has a clue still. but they're all aware they know the word exists where maybe they didn't but actually the context behind that and the meaning behind that still isn't there is it so yes because it applies to individuals

Mark

It's not a hat that you can put on everyone, and then you people know how to deal with that. You have to describe the specific flavor of their profile, which again, like, yeah, I definitely do. I'm just like, here are the operating instructions for my child to the degree that I know about it. I can't tell you everything. I won't be able to tell you what would happen if a pigeon flew into the room, but I can broadly tell you what will happen if the music's too loud, if it's too cold, if you don't give them the food that they're expecting.

Kieran

Yeah, so so you're you're kind of anticipating what their needs are and communicating those things. And there are lots of parents that don't do that. And they don't do that because rightly or wrongly, they're embarrassed, because they might hold stigmatized views, because they might be. worried about not being able to communicate their child's needs or worried about judgments and things like that. There is another factor to this as well, why it is a broad label. And that's because it's also an incomplete It doesn't actually tell you anything meaningful about a person because autism is not this tangible thing that you can touch and point to and say, this is what this is. Autistic people aren't just autistic. We have so many other things going on in our bodies and things and so many other things happening for us. so many facets of our identity as well which is the same as any other human being who has lots of facets of their identity their personality who they're brought up by their beliefs and all of those things So there's a next level to this where, yes, it is a completely pointless, meaningless label to the extent of it's not describing a human being. It's actually putting all these human beings in a big box together and saying that they're all the same and they're not.

Mark

Yeah, yeah, yeah, yeah.

Kieran

Because we're humans.

Mark

Yeah, of course. And another of the things that I was thinking as you were talking about that, I think another reasons people might not be able to give more detailed nuance to their child's neurotype Because they don't know yet as well. Like, especially if they're early, early on in their journey. When my kids were first diagnosed, I didn't have a clue. I genuinely, because they went, right, he's autistic. Great. Here's your leaflet, off you go. And early on, you expect people to know what to do with that. You know, that like at school, for example. And you find out pretty quickly. They don't know that at all. And because you're still trying to work it out and you spend a lot more time with them, and you know, you spend a lot more time thinking about it and researching it So it's only really over time now, because I've had neurodivergency in my household for many years now, that I feel confident enough to go, this is the specific profile of this child and this is what this child needs and this is what this child needs. And to not make any assumptions that the person that I'm dealing with is aware of how to do that.

Kieran

Yeah.

Mark

So obviously, you know, if we're going to accept that the word autism is too broad without further information. I want to look at some of the different ways that people have have attempted to subcategorize autism and compartmentalize the diagnosis over the years. So that we can try and unpick some of the thinking around it and why it might be problematic. And the first one that sort of came to mind from this, and it's another one that gives me the massive ick. Is high functioning or low functioning because it is very, very binary of like this lot over here. broadly okay and this lot are fucked, right? That is that is the the implication there. And it's horrible and it's massively ableist and it's there's a lot to unpick because it's not an official classification. Just to be clear, it's something that I've heard people say a lot of times. And it's deeply dehumanizing, as you were kind of alluding to earlier, and instinctively I hate it. I'm guessing you'll also be on that train, Kieran. Yep, absolutely. Because I think I guess it feels like we're writing off the expectations of what autistic people are able to achieve. You know, if you're low functioning, you know, give him some coloring.

Kieran

It is basically that. And This is a historical narrative and I'm going to use a word which people it's going to make people's eyes roll which is eugenics So the history of autism is, to use your word, it's flavoured. With eugenics, if it was like a stick of rock, you snap it open and the word eugenics would be. wrapped up like written in the middle of it that's that's the core of this narrative and that goes back beyond like hans asperger who which we'll get on to we'll get on to who like there's nazi associations things there actually goes back earlier and earlier and earlier that the history of eugenics is very tied with the history of disability and it's very tied with the history of autism as well okay so just explain briefly what eugenics is to the people that haven't been given the homework from you so uh eugenics is an ideology uh within which um uh it is felt that there should be a purification of the race of humans So that means that people who, well, I mean, Hitler is a really good example of this. Hitler is not the only eugenicist and he's not the biggest eugenicist that's ever been on the planet, but he's probably the most famous in terms of. His ideology was that human beings should look like a certain person, which was Aryan, which was white, blonde, kind of that Nordic kind of look. Humans should be intellectual, humans should not be queer or gay, humans should definitely be white, humans should not be disabled in a certain way. So eugenics is wrapped around these kind of concepts. Not every.

Mark

person who is eugenicist is going out and committing mass murder but you know the ideology kind of underpins that it's mired in an evaluation

Kieran

Yeah, it's a judgment, it's a value judgment, yeah, yeah.

Mark

So, um crucially only through one set of people's eyes of

Kieran

Yeah, yeah, and usually that one set of people are the ones that hold the power.

Mark

Yes, quite quite quite funny that, isn't it?

Kieran

Particularly when you apply this narrative of Aryan-ness to Hitler, who was brown-haired, was definitely not Nordic, was. definitely not the perfect person you know so so the people who present these views are often the most problematic in lots of ways so anyway so the autism narrative is very very wrapped up with that and it's also wrapped up with something else so It is that value judgment, but it's about productivity as well. Who holds value is framed around capitalist and neoliberalist ideas of. who is able to contribute and who is not able to contribute.

Mark

So functioning is an absolute different word. Functioning is a productivity word.

Kieran

It's related to work. So if you are able to work, functioning is you are able to pay taxes basically. Non-functioning or low-functioning is you are not able. to pay taxes so which is a disgusting way to look at human beings but this is the world that we live in thanks to capitalism and and neoliberalism particularly so The idea of being someone being low functioning is exactly as you described. It is the writing off of a person because they do not hold value. The idea of someone being high functioning means that they are able to perform some role in society and therefore contribute to society in some way. Therefore, they do have a little bit of value. They're high functioning. They're not completely functioning because, you know, they're not fully functioning. They're not fully functioning, but they're partway there, you know enough that they can maybe like work

Mark

shop in the corner or something which is insane because i've met so many neurotypicals who were who were low functioning you know what i mean but again when do we use this terminology we use this terminology with people like alcoholics

Kieran

You know, and so again, we've got this moral framing of people around kind of contribution, what you can do. You know, you're okay if you're a functioning alcoholic. If you're not a functioning alcoholic, you're a problem. So these same kind of narratives get applied here. So where this idea comes from of someone being low functioning, and you are absolutely right, and I'm so glad that you said that these are not clinical terms because they're not. Not officially. They have been adopted by professionals. Lots and lots and lots of professionals, unfortunately, which is where we as people who exist outside of the professional world pick up this language. This is where this rhetoric comes from. So low functioning is tied in with the concept of there is severe autism. Those two are wrapped up together. Usually it describes someone who has. a co-occurring physical disability and or they are non-or minimally speaking. So that describes someone who would have that kind of social construct label of low functioning attached to them. So that assumes that someone who is not able to speak or has a co-occurring physical disability does not hold value as a human being.

Mark

Which is yeah, just that's horrible. It's a poor disgusting. Yes. And obviously if if I hear that in the wild I'm going to push back. I don't know typically how hard to push back in those situations sometimes, you know, because Sometimes you don't have the spoons, right?

Kieran

It's context, always context.

Mark

And you're not necessarily, you know, sometimes you meet people, you're like, I am not going to change your mind. Yeah. And, you know, you're not going to change your mind, that's for sure.

Kieran

So this is where, obviously, recently we've had the government of the United States say lots of things, the president and RFK Jr. saying lots of things about like Tylenol and weird stuff about circumcision.

Mark

I've stopped even reading it because it's just like.

Kieran

It's bonkers, absolutely bonkers. It holds no ground whatsoever. There is no truth to any of it. whatsoever. It's all kind of wild correlation at best. But when they're talking about autistic people. They have the picture of an autistic person that they have in their heads is not me, is not your children. It is someone with a co-occurring physical disability. and or who is minimally or non-speaking. So they are making value judgments about those. When they're looking for cures, that's who they're trying to cure. When they're trying to get rid of those people, that's the eugenics narrative. Again, they're trying to prevent those people from existing because they don't consider them as holding value. They consider them as problems. And we'll get into the, probably get into that in a bit more about kind of actually what's really happening for those people and what we can do to support those people better, definitely, rather than just trying to eradicate them, because that's just disgusting and evil.

Mark

Yeah, absolutely. This sort of brings us on to another of the subcategories of autism, which you alluded to earlier, which is Asperger's. Right, Asperger's syndrome or Asperger's condition, however you want to term it. So Asperger's was an official diagnosis until 2013. And it was used to describe autistic people who had what so the the criteria were that they had no clinically significant delays in language or cognitive development. But did have all the social communication and restricted behaviors, repetitive behaviours around it. And there are, I think, a lot of people that were diagnosed with Asperger's That actually kind of still lean into it, even though it's been declassified, if you like. That actually lean into it because it it differentiates the different categories, I guess. Um again you know, and it's probably just a byword for high functioning, low functioning Again, isn't it?

Kieran

Yeah. Yeah. It's it's hard because I'm like, like, I can, I can, you're struggling to even frame this question, aren't you? Oh, yeah, this isn't my question for me, genuinely. Yeah. So it's it's I think I think for you do not be concerned about kind of tripping over and me correct You or how are you to correct me? But I wouldn't do that. That's the thing, that's not what I do. So, trip over your words is what I'm saying. It's okay to. because this is so complicated. But Asperger's, you're right. It was just another way of saying high functioning, basically. The differentiation between what was then the Asperger's diagnostic construct and the autism diagnostic construct. was if you had what was considered delayed speech or you didn't speak at all you ended up on the autism pathway If you spoke what was considered on time developmentally, or you spoke early, you went down the Asperger's route. That's it. That's the only clinical difference between those two diagnostic labels. Now it didn't matter if by the age of 10 You might have someone with an autism diagnosis who speaks just as well as someone with an Asperger's diagnosis, but two completely different labels. So it wouldn't they wouldn't have like been promoted into like the Premier League or whatever So no, so so you could have two people with exactly the same communication presentation but have two completely different labels because they did they've they learnt to speak at a different time.

Mark

Yeah, it's quite interesting that I use the word promoted there because it is It is seen as a hierarchical thing, isn't it? It's like, you know, one is Premier League and one is the Asperger's label was welcomed predominantly by parents.

Kieran

who were relieved that their children weren't autistic because the connotations that came with that label were and there's other things going on here as well again which is like the problematicness of this that we don't take that next step and we don't think about what other things are going on for a person. So the majority, anecdotally, the majority of people who ended up with an Asperger's label. spoke early and usually spoke with that narrative that Hans Asperger himself used around the little professors so children who had very high vocabularies were able to talk about complex topics to the nth degree at a very very early age some of those children were able to read very early before they even went to school and so we have this narrative of intellect Which is really really really problematic because there's something going on in lots of those children called hypolexia which is basically a way of engaging with language and communication. It just comes very easily to you. It doesn't mean you're more intelligent than anybody else. else. It just means language can come very, very easily. The written language, read language, the spoken word, those things can come to you quite easily. And obviously for other people that might not happen. So it came, the Asperger's label came with this kind of idea that people had massively high IQs. They were massively intellectual. So therefore, that was the safe kind of autism. That was the nice one. The one that really everybody wants. Yeah, the user-friendly one. The one that's more functioning than others. The one that's going to pro access society and pay the taxes and need less support and all of those things that label was only around for 13 years was it only 13 in the end sorry 20 years and it was 1993 it came in and it was 2013 that it left So for something that was around for such a short period of time, we've been left with this legacy still of all this division and all this kind of separation. And there are still people, you're absolutely right, who received that label. It was the label that I was given, but who received that label and have kind of clung onto it and held onto it as their identity because. They still don't want to be seen as like connected to those people over there who have got physical disabilities or who are non-speaking. They do not conceptualize themselves as existing in. any kind of relatable way to those people over there when there are actually lots more similarities than we think. So again, that's something we'll probably explore in a bit, but. the intellectualism of it and the highbrownness of it and the safety of it, that became the safe label and that's what I was clung on to. But that's also one of the biggest reasons why it was all folded in back together again because they realized it was absolutely pointless. the separation and the division didn't mean anything when actually underneath all of this people who are deemed as high functioning people given the aspergers label they are deeply struggling in lots of ways. They still have needs. So there are so many things going on here that we're not taking into account. because we're separating people and carving people out based on our perceptions of them and our lack of understanding of actually what's connecting everybody.

Mark

Yeah, there is a desire to differentiate. ooh, for some people, as you say, for some parents, for some autistics themselves to separate each other out. But I am interested in what you're saying about that. There's more similarities than there are differences. And, you know, and if you sort of push one into one bracket and one in another, then they both get left behind. Yeah. I mean, I think one of the reasons it was removed from the current DSM five in the US, which was subsequently then removed from the The ICD-10, which is the World Health Organization's classification, was because it was sort of, they felt it was unhelpful to create categories for what we What you're saying. So they felt that a spectrum was more useful of seeing it not as what this box over here or this box over here, but a spectrum. And that's when ASD came about, right? Yeah. ASD. Did it start out being called ASC? I know I've heard it autism spectrum disorder or autism spectrum condition.

Kieran

It's ASD in the DSM, but when you come over to the ICD, because the ICD lags about seven to ten years behind the DSM. they used ASC, condition. And the ideology behind that is that condition sounds a bit nicer. Disorder sounds really, really problematic. Condition sounds a bit better. but actually in clinical terms ironically they both mean exactly the same thing it just makes people it just makes people feel a little bit better about saying it you know it's it's literally a kind of linguistic thing um but they mean exactly the same thing There is no difference between those two terms whatsoever.

Mark

Some people do feel quite strongly one way or the other, though, as well. Oh, yeah, because they're both, neither of them are ideal. to be honest.

Kieran

They're both awfully problematic.

Mark

Don't know if we get into that now or we go no, we'll move we'll we'll save that bit for later. Listen out for that later for the problems of ASD and ASC and the medicalization of the terminology around our children. So obviously, there were lots of problems with Asperger's, as we're saying. So it became shorthand for high functioning. It created a hierarchy. It was named after. a douchebag. Hans Asberger, Austrian psychiatrist who is, let's say, ethically problematic.

Kieran

That's a polite way of putting it.

Mark

Yes, so as you discussed, he was complicit with the Nazis in literally identifying children to Go to death camps because they were not seen as beneficial to society. So, in short. Fuck Hans Asperger, which is why naming something after him is not ideal. And there was an attempt at revisionism at one point and going, oh no, he just Really cared about kids, man, until they uncovered loads of evidence that no, he was he knew exactly what he was doing.

Kieran

Oh, yeah, yeah, there was um, there was disbelief. because when Asperger's was finally adopted as a label and it took about 14 years to actually get it to be brought into the psychiatric manuals, there were people around who knew Hans Asperger because he'd come kind of back onto the scene in the late 70s. He'd never gotten. He was always working around kind of Europe and stuff, but like into the mainstream kind of like people connected with him. And Lord the Wing, who was the driving force, who's a kind of very famous, she's no longer with us, very famous researcher. clinical psychologist who has given us much of the language that we have. Lots of her ideas came out of Asperger's work and lots of the narratives that we have around autistic people now are under pinned by Asperger's work and like the high functioning, low functioning narrative that we've literally been talking about. The idea of the spectrum came out of Hans Asperger's work. So Asperger's syndrome was not what he wrote about. It was named after him. Lorna Wing made her own. work and based it on Asperger's work loosely, but it was kind of, you know, it was like 50, 50, 60 years on. But Asperger was absolutely complicit with the Nazis. We have plenty of evidence now that points to that very strongly. And he got away with it.

Mark

Well, no, because now we're on a podcast telling everyone what an absolute dick he was. So take that. See, one of the things is and this is quite a tricky one to articulate. But I'm gonna do it because I think a lot of other people have a similar view. 'Cause Asperger's um sort of creates this distinction between different presentations of Autism, one that encompasses delays in language development and cognitive development, and one that doesn't. And that's not saying that they don't both have needs. But you need to respond to those needs very differently. And that's why I think it's kind of hung around because I feel like it's useful. And folding everything into ASD, as we started out saying, doesn't really tell me much information And at least you're sort of giving me more of a I'm not saying use it, but at least you're giving me more of a clue as to what to expect or how to accommodate or how to support the needs of children with those different presentations.

Kieran

But does it though? Does it really? I mean we talked at the beginning about kind of you know if you name if you name someone as experiencing autism you call them autistic that doesn't tell you anything about the person and their needs and stuff it's too generic a label if i said to you um someone has asperges syndrome or someone you know, however they might define themselves, that doesn't actually really tell you anything about them. Again, it's still that homogenizing, that grouping. So the problem that we have firstly is that we. are trying to reutilize the same language and the same concepts and the same ideas, but literally slapping different labels on them. So what we need to do actually is reframe everything that we think we know. So there is a lot of unpicking that needs to be done in this entire narrative where we pull it all apart and we put it back together in a much more meaningful way. and that's some that's a lot of the work that I do it's a lot of the work that other like my colleagues and my peers try to do is actually let's reconceptualize this entire experience and what we're talking about because what we have been talking about is really problematic and it's framed really badly. So actually what we need to do is consider that there are other parts of our experience. which are kind of weirdly reflected in the diagnostic criteria. The diagnostic criteria obviously captures people in lots of different ways. But the way that they frame that is problematic and there are better ways of doing it. So when I spoke earlier about the kind of if we separate people out, if we carve people out, if we say this person has Asperger's and this person over here has autism. or this person over here has, I know we're going to talk about this in a bit, profound autism or severe autism or whatever. They're still meaningless labels that don't really tell us anything. They're just surface labels.

Mark

They are surface labels. And I'm not saying by any means adopt them, but to people who don't have the time and or the energy or the understanding to research the nuances. Or really, the inclination to do that, they are more useful than autism as an umbrella label. I'm playing Devil's Advocate to a degree here. I know you're. I know you are. My ex-mother-in-law, for example, is not going to take the time to educate herself about this kind of thing. It would be more helpful for her for her to say, This child is non-speaking. Then she can stop getting offended when the child doesn't answer. Do you know what I mean? She can. you know, tailor her expectations accordingly because she will she will have judgment because she's awful Sorry, I might add it out.

Kieran

I'm saying nothing.

Mark

She's my ex-mother-in-law, it doesn't matter anymore.

Kieran

Don't trigger me.

Mark

But what I'm saying is that it's not f... For the people who take the time and have the interest to understand the nuances, it's for other people who at least would have a shorthand to be able to temper their judgment. Yeah.

Kieran

So you might not like this answer.

Mark

No, I really hope you I hope you can smash it to pieces because I don't like what I just said.

Kieran

There is a part of me first of all that says if this is a grandparent or if this is a relative or or a friend or whatever why would you not want to learn why would you not want to understand why would you want to keep your knowledge on a surface level behavior because that's just Lazy, and that just gives you an opportunity for bigotry.

Mark

Oh, that's a whole separate podcast.

Kieran

But it's probably a related podcast, though, isn't it? In terms of this is the same kind of mentality of If I hadn't taken the time to try and understand myself and understand my children, I would have an incredibly different relationship with my children right now.

Mark

Oh, 100%. Yeah. Yeah, yeah, yeah.

Kieran

I completely agree. We do have, as our family unit, we do have. people around us who don't understand, who don't get it. And I see my role as that if they do not want to be educated, if they do not want. to learn in order to support our children better or have a better relationship with our children, then they will be held at arm's length.

Mark

Oh, I completely agree with that. But there are people that will drift in and out of their lives that will be like um, you know, and we can't help that. We can't completely protect protect them from that. So as a shorthand for the ignorant And there's a lot of ignorant people. Oh, there are. Sweet Jesus. Is it potentially helpful? And, like, that is, as I said at the start, I don't know the answer. No. Because it's so. Notty, isn't it? It's so nuanced and so knotty. And I'm just sort of thinking out loud and hoping you can go, well, no, this is what you should think. Okay, that's but I've fine. I thought it all out now.

Kieran

I do hear what you're saying. And I do agree to an extent because, you know, our children need to be empowered. We need to be empowered as well to kind of pick and choose. who we spend our time with, who we explain things to, and you know, to mitigate the harm that they might cause our children or ourselves or whatever. So there is an element of that there, but there's also an element of. Why should we have to adopt superficial labels that are incredibly problematic and carry a boatload of stigma and cause harm indirectly and directly in order to appease people who are too lazy to. to try and stop being judgmental, bigoted, you know, like I could carry on with the list of things that those views are. So there is an argument of Yes, sometimes we need to do things to keep ourselves safe and sometimes that might mean just using shorthand language and I think if it's keeping you safe, then absolutely acceptable. if you're using it all the time that's probably not keeping you safe at all it's probably reinforcing many of the challenges that you kind of have so yeah don't put it on your business card yeah yeah but but i mean if you were to go to your neighbor and you're Neighbour said, you know, like that person said to you a few years ago, like, like, like, what does this mean? Like, well, how severe are they? Or whatever. You've got some choices there, depending on your agency and depending on your privilege. you could spend the time and try to explain to that person actually why their their view might be problematic and what it really means you could just agree with them or you could find some kind of halfway house in between, which is probably kind of what you would have done had once you got over your initial like, I don't know what to do with this. If someone came to you now, you probably maybe have a little bit of a better answer. than you would have done a few years ago.

Mark

Okay, buy me a pint.

Kieran

Yeah, and we'll sit down and talk about it. Exactly. So, you know, so picking and choosing your battles and who you have that kind of context with, I think is fine. But again, if we are using labels which are incredibly problematic and are still fuel, and like you said, there are a lot of people out there with. very superficial views and if the overwhelming number of people are doing that then all we're doing is reinforcing that superficialness by using that language. And by not taking the time to explain when we have the opportunity to do so. So you've got to temper that with your safety and your own needs and your context and your energy and things. But. You know, this is my way of thinking that if there is an opportunity to educate, I will educate.

Mark

And how someone takes that is up to them. Yeah. Just to kind of pick up on something that you said. It is damaging as well. You're sort of weighing up who it's the most damaging to. And I'd rather be damaging to the preconceptions of an ill-informed bigot than I would. for my wonderfully neurodivergent kids.

Kieran

Yeah. The issue is here that this is such a complicated narrative. and it is deep, it is nuanced, it's rich, and we're still unpicking it as well. We're still figuring out all of this, like things change at a rate of knots and our understanding is changing all of the time. but because it's a narrative that has been very fixed and rigid, ironically, for a very long period of time, over a century. you know that has been communicated really badly it's been created by some really really flawed and problematic people as well asperge is just one i could reel off a hundred people that have contributed really highly to this narrative who are deeply problematic Because it's been around for so long, it's what's in people's heads. It's the stereotypes. The media reinforce this, the like TV shows, films, movies, they create expectation. They create these superficial ideas, these stereotypes. And stereotypes exist for a reason. There's always going to be someone who can lean into Sheldon Cooper and think, oh, you're very much like me. That's why stereotypes exist. But. Breaking those stereotypes is one of the biggest battles that we have and it's and we can do that with the language if we have the opportunity. I think we should take that opportunity.

Mark

Yeah, okay. You convinced me.

Kieran

I don't know if I answered your question or not, but no, you did.

Mark

You know, it wasn't really a question that needed an answer. It needed a discussion. Do you know what I mean?

Kieran

I mean, you started this with. like the spectrum, this idea of a spectrum and when all these different labels were kind of folded in together, that was the concept that they kind of used. We are now at a point where we had lots of labels, we had Asperger, we had classic autism or Canner's autism We had PDD NOS, which is pervasive developmental disorder, not otherwise specified, which is basically like the IBS. of the autism world like we know you're autistic we don't know what box to put you in so we're just gonna give you we're just gonna give you this label and off you go because you'll be happy with that won't you and that'll fix things so we had all these labels and they were then folded into what we have now. And now we're talking about, well, that hasn't changed things. So let's unfold it all again and get lots of different labels. But we've already been there and it didn't work. So we're actually just going back in time to the thing that didn't work in the first place. So the problem is, is the labels that we are using and the ideology behind them. That's the bit that needs ripped up and started again from scratch. The way that we frame autistic people, the way we talk about and perceive autistic people, the way we understand autistic people. Is not the right way when we are using all of these terms and labels because that's the framing that's caused us all the problems.

Mark

So that brings us on to the DSM-5 levels of autism. Which is the so if you don't know what the DSM-5 is, it's the fifth edition, that's the five-bit of the Diagnostic and Statistical Manual of Mental Disorders, which is the US way of defining things. And that was released In 2013. That was the one that was released that replaced Asperger's with ASD. And they diagnosed based on two things: social communication and restricted or repetitive behavior. Just the two. There's no other facets to autism, is there? So I just thought it was interesting to look at how the because they they give them levels So if you see any kind of comment threads written by Americans, you will see they will like put front and center. I have a level three artistic data. It's important for them to identify it. So I thought it would look at what the levels are and how they're defined, and then we can unpick why they're like that. Why that's potentially problematic. So, level one is your entry-level autism. You know, you say ground floor autism requiring support. That's what it's defined as. So basically says without support in place, deficits in social communication cause noticeable impairments. difficulty initiating or responding to social interactions. They specify whether they're able to speak in full sentences. So again, we're back to that. high, low functioning thing, aren't we? But whose to and fro conversation with others fails again, fails. It depends who you're talking to. You put an autistic with an autistic. They're not failing. No. And whose attempts to make friends are odd and typically unsuccessful. Again, context is key. So they say that the inflexibility of behavior causes significant interferences with functioning in one or more contexts, and they have difficulty switching between activities and they have problems with organization and pl Planning, right? So that is your level one. I know a lot of a lot of neurotypicals that fulfill a lot of those as well.

Kieran

It's not very nuanced, is it?

Mark

But that's, you know, that's a different issue. So level two, they define as requiring substantial support. So not just ret requiring support, requiring substantial support. And that is where there are marked deficits in verbal and nonverbal social communication skills. social impairments are apparent even with supports in place. They have limited initiation of social interactions and what they define as abnormal in inverted commas responses to social overtures from others. They define speech as simple sentences, interaction limited to special interests and markedly odd nonverbal communication. You're sighing as I say this, because this is, you know, it's awful. It's disgusting. I'm going to carry on now. Level three is requiring very substantial. support. So they're saying severe deficits in verbal and nonverbal social communication skills, severe impairments in functioning, very limited initiation of social interactions, few words of intelligible speech, rarely initiates interaction and makes unusual approaches to meet needs and only responds to very direct social approaches. Inflexibility of behavior, extreme difficulty coping with change, basically, huge amount of distress when there's a change of focus or action. So that is level three. Now, I've got some issues with this. And I'm sure as shit that you do. Do you want to lead us off as to why this is problematic?

Kieran

Where to start? Okay, let's think about this through a lens of context, first of all. So when I'm saying what I'm about to say, I'm not diminishing anybody's experience. I'm actually going to use my own. So what you have just described, credibly problematic framing, first of all, as you picked up as you were kind of. narrating your own own thing because it's really hard not to it's really hard i tried not i tried it's not in the it's not in the bullet point is it i just i couldn't it's just really hard it's Really hard to speak. to read these things out loud and say them out loud without actually running a commentary with it because it's so problematic. Anyway, parking that for just a moment. What you have just described, dependent on what period of my life you would have known me, or what timeframe, or what experiences, if you popped into certain times of my life. you will have seen me experiencing all of those different things at different times.

Mark

Yeah. Yeah.

Kieran

So I don't know if we talked about this when we last came together, but Around communication, which so much of that is framed around, so much of that is framed around speech. Those verbal language speeches.

Mark

That's one of the only two things they assess on.

Kieran

And when they're using the term verbal, what that actually means is speaking. And you used non-speaking before, which is absolutely the right term, which is how non-speaking people actually define themselves.

Mark

That's something that I picked up from you last time, by the way.

Kieran

Yeah, so so non-verbal like like nobody nobody's non-verbal People make noises people make noises with intent. It doesn't mean that they're not necessarily speaking um you know so those two things get conflated quite often and when we're talking about verbalism in in speech and language that can mean things like written communication things as well. So there is a truism to it, but how the outside world perceives all of that is basically if you're non-verbal, you can't communicate, which is wrong. So anyway, I've gone off tangent just a little bit there because I have to get on my high horse about how we frame non-speaking people. But different times in my life, you would have experienced me through those different kind of levels. I have an incredibly problematic relationship with speech. So when I am. doing autism related things like doing this podcast if I'm working if I'm presenting if I'm speaking I can use my voice I absolutely can use my voice, but the amount of scaffolding that I have in place to enable me to speak is quite phenomenal, really, if I were to sit down and actually think about and listen. things that I do in order to get me to a point where I can come and do this. The amount of energy that I pour into that is absolutely destroying. So like after having a conversation like this, tomorrow I don't have anything booked in because I know I need to rest my voice. I know I need to not be able to speak. So if you were to come into our family home, you would see a bunch of people who are furiously communicating if you know the right way to look. Okay. Because not everyone is using their voices. And that's most of us don't. We're actually a very, very quiet household. We communicate through text mostly. My youngest and I would. they've evolved into kind of more text communication and but we used to draw like we used to literally hieroglyph to each other yeah i think i did probably did mention you did last time it's fascinating so you know so so but from an outside perspective If you were to walk in, you would think, oh, there's five people in this room and they're not talking to each other when actually we're communicating constantly. So to frame all this stuff around speech and to make an assumption that someone is a level one. you know, they're the entry-level autistic person. You're missing so much nuance. You're missing so much about that person. And actually, the way that you're framing that person is probably then what they adopt for themselves. So you were talking about like Americans using these levels actually because like like I run support groups for autistic adults We're using them in this country, too. Oh really? Yeah, yeah, some services uh diagnosed by the ICD, some diagnosed by the DSM.

Mark

Really? Is that true? In this in the UK? So I didn't know that it had made it over here and I was just interested in the fact that it is sort of categorized in these ways. The ICD doesn't have levels then. Is that right? So again, just to kind of clarify, the ICD is the World Health Organization's classification, and that was adopted by the NHS. Um, I think in 2019.

Kieran

It's weird because the way that we use the ICD here is not how most other countries use the ICD. They use that as a coding manual for insurance purposes. So they use the DSM as the diagnosis manual and they use the ICD for their like behind the scenes administration kind of stuff. But we use it as a diagnostic manual, pure and simple here. So there is a difference between how we do stuff and how other countries do it as well.

Mark

Mm-hmm. So as you were saying, that it's hugely problematic giving those different levels. I'm genuinely surprised to hear that, that happens here. but it does underpin this attempt to neatly compartmentize autism. No autistic person I've ever met falls neatly within to those categories. You know, as you were saying, it's context, right? Look at Otto. He is mostly level one. He speaks in full sentences. He seeks out social interactions. But A large part of his profile is level two, right? This inflexibility of behavior difficulty with coping with change, which is Frequently, as they define, obvious to the casual observer. I mean, you know what I mean? The kids in absolute meltdown coming out of school. That's not level one. So wha what where does he fit? And it's interesting as well that you've you mentioned that the classifications are used for insurance purposes and for diagnosis purposes. That's really fundamentally what it's about. It's about trying to categorize them for support, to know what type of support to give them or how much support to give them. So it's not really for our kids. Again, it's not for them, is it? These categorizations are not for the people that they're being pinned on. which is really messed up if you think about it. It's for other people to then go, Oh, right, you get in that line because you're this and you don't quite fit in this one, so you're this. And you know, there are kids in the middle of this. There are humans in the middle of this who have no idea of what they're being assessed on or judged by. They're just trying to get through school. Another issue that it doesn't account for, which I leapt out at me was that it doesn't account for masking at all. There's no mention, like with all the social communication stuff, there's no mention in there or no acknowledgment that A huge number of autistic people mask just to get through shit. It's a huge part of India's Autistic Profile. But no casual observer will ever ever see her functioning impaired because she masks so successfully. And, you know, it's only in certain situations then that, you know, it's it's obvious, you know, typically when she's she feels safe, right? At home where she's very often situationally mute and that has never been reported at school. So I don't think India would be diagnosed under that American model.

Kieran

No. There is so much nuance missing from all of this and that's again like I said we we can we can use the same labels we can compartmentalize people we can create these what are called phenotypes when we kind of make distinct categories and but they're all incredibly arbitrary and they're all missing so much information and Again, we have to look back to that history and we have to think there was like a century, over a century, where autistic people were looked at. and observed and weren't part or weren't enabled to be part of their own narrative the way the way that autistic people were described did not include autistic experience Nobody ever thought to ask us because they assumed that we were incompetent, that we're not intellectual enough, or we're not smart enough, we're not clever enough. that we're problematic in so many ways, so we are not reliable narrators to our own experiences. So we were excluded from that. And then we've had a bit of a shift. in about the last kind of 15 years or so where co-production has started and autistic voices have started to be more valued and that's seeped into the research. So when we see these big shifts in collective understanding, things like masking and words like monotropism and stuff like that, which are informing the world in a much better way and informing research in a much more humanizing and meaningful way. Those things still don't exist in these diagnostic manuals.

Mark

So I wanted to talk about the flip side of this coin because, you know, we're discussing how it's unhelpful to try and pigeonhole autism into various different categories. I understand why people do it, but it's hugely problematic as as We've discussed, but there is a flip side of that coin where there is a movement of some people who are wanting to then revert back. to that hierarchical view of it by referring to profound autism because they don't feel like ASD as an umbrella term is helpful for their kids and is prescriptive enough for Describing what their kids' needs are. And there was an article that was very recent, like last week. And I read it and it was really timely as I was getting my head into preparing for this. And it's in the New York Times. And it had the headline, Autism Means Too Many Things to Mean Anything, which I can't disagree with as a statement. And it was an article written by Emily May, who is the mum of a child with what she describes as profound autism. And that was a term that was coined by a Lancet Commission in 2021 in the US to describe individuals that require round-the-clock care with IQs below 50 or minimal verbal ability or both. So again, the verbal being used to define that. But she is really keen to embrace profound autism. And she was kind of pointing out a lot of. issues with not having access to that diagnosis. And the article that she wrote said that like just over a quarter of the people with autism would qualify as profoundly autistic. I don't know what the statistics are like in the UK or whether that's true, but she her argument is that by removing the Asperger's diagnosis and unifying everything under the autism umbrella the support for children like hers has been hugely impacted. And I'm going to pull out a couple of quotes in there because she puts it in a better way than I think I can paraphrase. So she said, It's difficult to have a national conversation about a condition that includes Elon Musk, Greta Tunberg, and my seven-year-old non-verbal daughter, who will likely need 24-7 care for the rest of her life. So again, this is back to those categorizations and how imperfect they are, I guess. Do you want to respond to that bit now? No, no, no, that's fine. Banging on.

Kieran

No, no. No, I think it's probably good to break it up and then. because there's a lot to pick apart in this isn't there yeah yeah yeah there's low i could have written a book deconstructing this and putting it back together and and Firstly, I want to say that the author of this, like with many parents, I want to acknowledge how difficult and challenging life can be for them, their families, their children. There is a huge, huge lack of support for people who are experiencing this. Firstly, and so I don't want anything that follows to kind of diminish that experience at all because it's very real and we need to be better globally better at kind of recognizing and supporting the needs of these families. Following what she said just there though, this is where it becomes kind of Again, we're back to that kind of the labels that we're using and the framings that we have aren't good enough. They're not meaningful enough. So yes, while obviously on a surface level, there is a very big difference between. I'm not even going to mention that first person. Greta Thunberg. Let's go with Greta. Let's go with lovely Greta. There is obviously a very big difference between Greta and this lady's child, first of all. And yes, the very, very superficial application of a label that's called autism to both those people is problematic if we only stop there. But we can't only stop there. In the same way that there are lots of people around the world who have very, very similar experiences that might have the same label for those experiences, but who have a vast difference in experience between them. underneath that label. So like with anything, if we only stop at the label, then it becomes problematic. And I think part of this issue is again around the kind of the perception of people who don't understand. which we spoke to earlier that that kind of like our neighbor doesn't get it our person that person doesn't get it it's meaningless for them so so like it's meaningless for everyone But it's not meaningless for those of us who are experiencing this. And it's important to not only look at the differences between people, which I'll get to in a second, because there are reasons for those big significant differences. But we're not very good and we haven't been very good about actually what connects those people. So if we go back to that diagnostic criteria and it talks about repetitive behaviors and it talks about intense attentional states and things like that. That describes Greta Thunberg as well as it describes that lady's child. So we have little understanding, or academically at least, we have little understanding of the internal mechanisms of autistic people. What's going on in here? They're slightly getting better at doing that and the way that I can answer this is monotropism answers that question. There is an internalized experience which that lady's child is having, which Greta Thunberg is also having, which I am also having. It's how we use our attention, how we use sensory information to. fuel that attention and what that means in terms of our communication, our body movements, our regulation, our energy, all those things we have in common. And the reason that I can say that with certainty is because there are a huge number of non-speaking autistic advocates who would fall into that profound autism category who have been facilitated with meaningful communication for them Who are talking about exactly the same things that I talk about?

Mark

Yeah, I actually read a response to this article written by a non-speaking autistic. Who just wrote beautifully and like clearly, and just said, you know, if you give me the tools to be able to communicate, you know, I will tell you. I don't know if you probably read the same one. It went Went a little bit viral, I think. But I saw it on the socials and it was just sort of saying, I don't agree with this because you're making an assumption that I am inverted commas low functioning. when actually if you give me the right tools to communicate, you know, I've written a thesis. And that's the thing.

Kieran

So that's why it's important to recognize that autism has always been an umbrella lobe. when we don't use it as an umbrella label we're actually doing that homogenizing oh there's that thing in the corner of the room that i mentioned earlier it's always been an umbrella label and underneath that umbrella label are swept lots of different co-occurring experiences Now one of the big differentiators between someone who might present like I present and someone who presents like that lady's child might be that they have a praxia of speech which i don't have i'm situationally mute i have dyspraxia it impacts my speech but it doesn't stop me from talking all of the time Someone who has a praxia of speech, that means that there is a disconnect between the messages that go from the brain to the throat and the mouth and the jaw and the muscles there. So they might know what they want to say. But their mouth cannot make that no it might make another noise or it might not make no any noise at all It is really important to recognize that non-speaking autistic people and autistic people with co-occurring physical disabilities that's where the differentiation comes in experience that's what that lady is seeing she's putting a label of autism covering everything on that but yet yeah she will be talking I bet I bet I would pin my house on if we were to talk to her and say is your child just autistic and she would say no they've got intellectual disabilities as well they've got a physical disability they're apraxic so all of a sudden we start listing lots of things which are related but aren't actually autism

Mark

Yes, and they're being lumped.

Kieran

They're all being lumped out. That's that one big category. So I've always said people defining themselves or where we define our children should be my child is autistic. And that means. this and this and this and this and this, but we don't go for those extra steps. I mean, the same with your children. I bet the introduction of one of them being autistic and ADHD, I bet it stopped there. yet you have listed situational mutism. I bet there are a lot of other things going on for your children that you've not had the light bulb moments for that no one's ever ever come to you and said, oh, do you think this might be going on as well? And like. L. Os Danlos syndrome, hypermobile Los Danner syndrome. I mean statistics have pointed to somewhere like 40 to 50% of autistic people are experiencing that. So that's a pain narrative. 50% of people in paint, you know, so there are over 70 common co-occurring conditions. Over 70, and yet we stop at the little group in the corner that's like autism, ADHD, maybe dyspraxia if you're lucky. And that's it. But there's another 70 things to think about that we're not thinking about, which lots of autistic people experience. That's why we have all these differences. That's why all of this is meaningless when we say high functioning or low functioning or profound or whatever.

Mark

But that's just autism. That's just autism. That's just one facet of it. And actually, you need to consider. Consider the whole, but again, how do you have time to do that? You know, I've got a little shorthand for how I describe my kids because it helps to contextualize them and explain what's going on for them. And it's easy for lazy people because then I can say they're all diagnosed autistic, but Jay is explosive, Otto is implosive, and India is situationally mute. You know, as those little highlights. But I could spend ages going into how anxious Otto is and, you know, and what's interesting there, Mark, is

Kieran

you're talking about describing your children to people on the strip, to a teacher, to that lady in that article is talking about clinical services. Clinical services that should not need a single label to define a person because their job is to be curious and explore and to be holistic around that person and look at the different things that person experiences. So there's a rabbit off there, isn't there, between kind of, yeah, I get that sometimes we need a shorthand for our neighbours, but when we're talking to psychologists or we're talking to psychiatrists or speech and language therapists or occupational therapists. They are supposed to be the ones who are qualified to be able to take those steps and don't need that shorthand.

Mark

It's interesting that you kind of bring it back to the clinical diagnosis of it because that is really where she's saying the the massive shortfall is, in that the narrative around autism now is, for want of a better expression, being hijacked by the ones that are not profoundly autistic by definition. Because they have a bigger voice, because they are, you know, literally have a voice. Yeah, they literally have a voice, but also it's the So much money is poured into autism research, but only that she was saying only about six percent of research subjects have intellectual disability, according to one analysis, because they're often seen as too difficult to test, right? And or likely to have behavioral problems. So they don't have a voice. So obviously, in the absence of this, then we make assumptions, we project, we get it wrong. And they equate that lack of speech, as you said, with non-understanding.

Kieran

It is really interesting that and I and I don't I don't want to indict this this this person like I said I don't want to diminish their experience but while she is absolutely correct that the world of research is terrible at co-production generally, but particularly when it comes to non-speaking people and people with intellectual disabilities are absolutely terrible at engaging people who exist within those dynamics. That's not the responsibility of autistic people. That's the responsibility of academia. So that's a kind of a misperceived direction of blame But what she's missed from there is that around 85% of all autism research goes into cures and causes. doesn't go towards people who are speaking or people who have families or people who have children. It minimally goes into those areas. And what does go into those areas? I mean, like, you know, your children have difficult experiences of school. They have lots of challenges. You as a parent navigating the systems have lots and lots of challenges. which are soul-destroying at best and are consistent and daily. It's like having another full-time job when you've got three children. It's like having three full-time jobs advocating for them. None of that research money really goes into those areas. It mostly goes into causes and cures. So again, her issue that somehow all of this money is being poured into people who speak. and people not like her child is not a real thing to do. So she's kind of left that bit out, whether that's deliberate or not, I don't know, but she's focused on that tiny percentage. And it is a tiny percentage, and I completely acknowledge that it's a tiny percentage, and it should be much higher than that. But that isn't the responsibility of other autistic people, because we don't have any power either.

Mark

Yeah, but I think her isn't her point though is that if you sort of have those different categories, again, you go back to you know 2013, before 2013. And you reinsert those categories, but you have a new one which she's arguing for in the next copy of the DSM of profoundly autistic. That gets its own pot of money for research and its own calls and its own spokespeople. And then you've also got the the other autism, which you know, whatever we choose to term the non-profound autism. then that has its own pot of money because they are different approaches, I think. You know, um we could probably have a separate episode about curing autism and the the money that's spent on that instead of trying to understand and accommodate. But I can see why she would be more minded towards finding a cure, which I'm not I'm not saying she is, but that would potentially be covered by the profound autism side of things. But like you say, it's not autism they're trying to cure. No. You know? It's really difficult for me because obviously we're on NeuroShambles, I can only talk about my lived experience. And I get many guests on to talk about things, but it it's easier for me to have conversations with people who uh have similar experiences So although my lot present very differently, so they've got various blends of autism, ADHD, PDA, anxiety, alexithymia, you know, all of those other, you know, co-occurring conditions. There are lots of parents of neurodivergent kids whose experiences are very different to mine. And I can't talk. for those people. I don't have any lived experience of non speaking communication aside from the times that India is overwhelmed and she goes situationally mute. I also don't have any lived experience of learning difficulties and sort of cognitive delays other than the environmental issues that my kids have, then they are environmental being in a mainstream school environment. They can access the curriculum intellectually but just not just not there. Not in that school. And if I'm being really honest, sometimes I like I feel a bit of a fraud sometimes on on Neuroshambles because Which is a weird thing to say, but like, maybe my kids aren't autistic enough. Does that make sense? Like, and I know it's ridiculous because they are like diagnosed, they're well autistic. But it's this thing that I I like I get loads of wonderful, lovely, positive feedback from from Euro Shambles listeners, and it's lovely But at the back of my mind, I'm constantly waiting for a backlash from parents who are having a much harder time than me with. inverted commas profound autism. And I I always worry that parents of neurodivergent kids who have higher care needs than mine think that I'm just I'm getting off lightly. Do you know what I mean? I have an an easy deal of it. And I hate the thought that I'm sort of misinterpreted about that. You know, and Like I don't think it's unreasonable to think that if if a parent of a uh an an autistic child who is non-speaking, hears me moaning about some of the really mean things that Jay says to me. They may well be thinking, Fuck you, I'd love my kid to be able to call me a simple minded idiot. You know, you are blessed to be on the receiving end of his acerbic barbs. And there's a really valid point to that. Similarly, you know, the people whose kids have cognitive delays hear me moaning about the fact that Otto can't be in the classroom and that's the only reason he can't access the curriculum. Just going, well, you know, again, I'm lucky with the flavor of autism that I'm dealing with. I don't know how to deal with that. I just wanted to say it out loud.

Kieran

I would say there is an absolute validity to you feeling like that. And I do understand and get why you feel like that. There is also. an absolute validity if another parent who has a child who has physical disabilities or who has different support needs. There's no good way of saying that really might look at you and think like I wish I had your life and or I wish I had your child's like or wish your child my child was more like your child or whatever but I think we have to validate that and I think we have to say, yeah, life can be fucking hard for lots of different people for lots of different reasons. and your context isn't any less just because you are having a different experience to someone else. Yes, their challenges might look very, very different to yours, but it doesn't mean your challenges are any less or any less important or, you know, so I think I think first we have to kind of sit within that and recognize that that. there are lots of different people with lots of different needs and this is the narrative of disability. But, you know, we could go back to the very beginning and think like. Why does nobody warn us that this is a possibility when we start thinking about having children? Why is the concept of disability not normalized? Why is it not in everyday conversation that this is a reality for lots of people and we should be expecting? this, you know, because our children aren't born as these perfect people that the DSM purports exist, you know, like humans don't exist like that. We are born with disabilities. We are born with things going on that cause us problems and we are born into worlds which don't recognize those things but we need to be better at maybe recognizing and validating those things. So again, like I would never, ever take away from the challenges someone has. I would never ever diminish their experience. But what I would say is that parents who have children who are experiencing life in the way that they are, who have physical challenges, who might have intellectual or learning disabilities. Those parents are not supported well enough to understand their children's needs. They then look to services. and to clinicians and to schools and to all of these places to help them understand and meet those needs. And those services do not do those things because those services do not understand. So it just creates this loop. of I'm asking for help and help isn't there. So that's causing us more problems and we become more distressed and stressed within that. So then we look for someone to blame and we say that this group over here are taking away the attention from us. This group over here. are drawing resources away from us. Now you know as a parent of three autistic children that services do not exist to support your kids. that the schools are bloody problematic, that the education system is destructive to so many children. You know that those things. So actually your situation, your context, although it might look, you can see, look at them through different lenses. From a big overview, you're both experiencing the system in exactly the same way and you're both butting up against the same problems. They just look a bit different for each of you. So what we need to be doing is coming together more rather than trying to be divisive and saying, well, if that group doesn't get the things, then my group will get it. That's not going to work like that. It's not how the world works anyway. actually coming together and coming from the same platforms. And so this is like why I am so invested in learning from autistic people who do not speak. from autistic people who are black, from autistic people who are gay. I throw myself into those narratives and learn as much as I can because they're not my experiences. So I need to understand them better. I need to know more. I need to be able to platform those people. So those parents are struggling, absolutely struggling, but the direction of their ire. the direction of their distress is not the right direction because they're directing it towards people who have as limited power as they do to change things, you know? So I understand the urge to push for this diagnostic label. to separate these children away and these young people away. But actually what that does is then cause huge divisions where we don't see the connectivity. We don't see how there are related experiences. And within those groups, within that profound autism group, there is a lack of meaningful communication facilities. There is a lack of AAC brought in. When we facilitate meaningful communication for non-speaking people, what we often find is that they are the smartest people in the room. But if we never get to that step, we assume there's an intellectual disability. Why? Because intellectual disability or learning disability as we call it in this country, it's identified through a test which requires you to speak. Right, okay. So if you don't speak, you automatically, you've got a low IQ, you know, so so, but, and again, if we don't take those extra steps in looking at different co-occurring experiences. What can we do to understand if someone's in pain, if someone's in distress, if we're not going to know that until we facilitate meaningful communication? So again, we need to take those steps, but we don't do that. And creating this label. is not going to do any of those things. It's just going to create a pity group where we pity the children and we pity the parents and we don't actually do anything meaningfully to change their circumstances and support them in the right way. Sorry, I went off on a soapbox. No, no, no, no.

Mark

This is this is all really it's really interesting because it is so there are so many different angles to approach this You know, there's, you know, depending on the needs of your child, depending on if you believe in a cures and the medical model, or if you are more minded towards the social model, and if you're talking about institutions, or if you're talking about Diagnosis. There are so many different avenues to explore here. So I'm glad that we've at least sort of scratched the surface of some of them. And I don't know if we've answered any questions. I don't know if I've asked any questions. But you know, if if the categorisation of autism is not ideal, and I think we can agree on that for a number of reasons. But also the view of autism as a big umbrella is also problematic, which we've also discussed. What's the answer, Kieran?

Kieran

The answer, I think, is stepping away from the medical framing where we don't need it. I think that's the first thing. I think the whole concept of diagnosis is problematic and flawed within itself when we're when we're talking about something which we can't actually pinpoint. You know, they're going to spend the next thousand years looking for the autism gene and they're never going to find it because there isn't one. This whole concept is problematic. What we need to do is start looking for a lens of identity. What are people experiencing? How do we humanize that person as best we can? How do we figure out who this person is? What makes them tick? What are the different components of who they are? How do we explore those things in a meaningful way and we individualize things towards those needs? So looking for a needs-based lens and identity-based lens rather than looking for. oh here's this diagnostic label we can put you in that box over there oh wait a minute you're not staying in that box we're gonna have to keep pushing you back into that box so you stay there or we'll give you another box you know like like like that's pointless and it's not getting us anywhere so There are aspects of experience for Autistic People which should and can be medicalized. So they're usually the co-occurring things and but there are there are other things as well things like when we wander in kind of mental health territory and stuff like that where sometimes medication is useful and supportive and it's a crutch and but also we have to look at the context of why that person ended up in that state in the first place like what happened to them to get them there they're the bits that we need to focus on and they're the bits that we need to change so what we should be looking at is social support And I don't mean support with socialization. I mean social as in existing in the world support. So how do we better explore and understand what? people need? How do we better explore and understand the needs of the more marginalised, like sub-marginalised groups within this marginalized group that we're already talking about? looking at different facets of identity and need and then we focus on that and then that's how people live better lives but we need to reframe this whole concept so This is why I constantly bang like people who listen to me are so sick of me saying this, but autism and being autistic are not the same thing One is a diagnostic label. One is an experience. And that experience can exist, manifest in lots of different ways because of lots of different factors. But there is a core collective experience that is running through. Speaking people, non-speaking people. Physically disabled autistic people, non-physically disabled people. Straight autistic people, queer autistic people. Those things are things like monotropism, the way we process sensory information, our communication styles, the way that we learn, the way we use our attention. They're the things if we're going to diagnostically identify things. They're the things that we should be diagnostically identifying, but not in a dehumanizing way.

Mark

Yeah, absolutely. But there's always a but at the moment. diagnosis is used to access support. And I don't know how you separate those things. Because obviously, we've uh we understand that the diagnostic criteria in any country is deeply flawed. And also access support to support is deeply flawed. So how do you provide support without diagnosis?

Kieran

Well, that's when you look at needs. That's when you start exploring needs. So we already have this system in this country, in the UK. So apologies to anyone who's out of the UK who's listening to this, but I'm going to hone in on the UK kind of process. So a child goes to school. And a child has needs within that school. Those needs by law should be identified and met.

Mark

Right, yes, so you can get an EHCP without a diagnosis.

Kieran

Yeah, yeah, you don't you can get an EHCP without a diagnosis. You don't even necessarily need an EHCP for lots of the things that autistic people need. That's usually just another way of like, let's avoid giving them what they need because really that's That's what they want, isn't it? And we can just make them behave and then they'll just do what we want them to do. But anyway, I digress. Education system is a whole other conversation. So by law, you do not need a diagnosis to access support in this country for education, for healthcare, for benefits. either for welfare for social support you don't actually need a diagnosis they're all needs-based whether they're actually needs based whether that's how the system work is a whole different Question, but by law, that's how it's structured.

Mark

That's how you prove your need, though. It's one of the things that you can wave and go, Look, I have this need because you know it's been verified by a lot of professionals and a shitload of admin.

Kieran

Yeah, and even then they might not believe you.

Mark

Yeah, exactly. So, you know, in a system that wants to say no, diagnosis. Helps to sort of to twist it to yes. Yes. Yeah.

Kieran

But whether, but even the idea that diagnosis leads to poor like that's questionable as well you know what does that support look like mark is it very good probably not You know, does it change things meaningfully in a school system, in a healthcare system, in a social care system? Probably not. That's why so many parents of autistic children are taking them out of school because it doesn't work. So as things stand at the moment, I think diagnosis is a necessity. Not for everyone, you know, we have lots of autistic people in the world, adults particularly who self-identify, who don't feel the need for that. and that's absolutely fine it's perfect and it's absolutely valid because it's a problematic construct and there's so many barriers to getting a diagnosis anyway but it's A necessity for that proof, like you just said, you know, like waving it in the air and saying, no, I am, because this person said I am. Here we go. So give me the help that I kind of require, even though they probably don't. But also at the moment, the way things stand, because we are so conditioned to needing diagnosis, we're needing that professional rubber stamping. It's also an access to identity. And identity is the important bit that gets missed out of all of this conversation. And because we're so busy looking at the medical stuff that we forget actually that People's identities are fundamental to who they are as a human being and knowing that there are aspects of your identity that you never had access to before, were never given a name. and that can textualize things for you and can help validate your experiences and help you move past the self-blame that all autistic people internalize because we're broken and we're the problems and it's always our fault. all of those things and actually it can help you move past and deal with those things a little bit but it can empower you so there is a usefulness to it as things stand within our system at the moment I would love us to get to a system where if you have need, you express that need or that need is explored and someone says. Let's figure out what's going to help you and then they go off and help you and we don't need to stamp a label on it It would be great if we could get to that system And that's the idealized world that hopefully we'll get to one day Never in our lifetimes, I don't think, or our children's lifetimes. But maybe one day in the future, if we can make the right changes, things will happen. But we have to exist within this system as it is at the moment. But there are ways to navigate that system that don't require the idealized view, but can lead us a bit closer to it, that mean that we can get what we want from it or what we need from it. if we know the right steps to take or it gives us a better opportunity to get those things. But as it stands, I think diagnosis is problematic, but it's needed.

Mark

Yeah, yeah, I love that idea that. Of just not having diagnoses.

Kieran

What do you need, Mark?

Mark

What do you need?

Kieran

How can I help you?

Mark

Give it a quiet time, mate. Well, there you go. Yeah, that's really interesting. Because so many people, like I knew my kids were autistic before it was agreed by the professionals, and I was already making accommodations for what they needed. And through research and understanding, and lots of conversations on neuroshambles of helping to understand my kids better, I have now been able to accommodate their needs at home. And I'll be able to advocate for their needs outside of home. Didn't need a diagnosis for that. No. Other than to access some of the support that we've got, which, as you've said, you know. Know, questionable how helpful it's been. You know, actually, the most helpful thing has been understanding and learning about my kids' individual distinct needs in different contexts as well. It's not, you know, they don't have the same needs all the time. Sometimes they'll have anxiety in some situations and sometimes they won't. Yeah, their individual needs in individual contexts. And that's the single biggest thing that's helped, not the bit of pain.

Kieran

And that's that's the thing. I mean, like, so again, this brings us kind of full circle back to the beginning again in terms of how useful is that label first of all. not very when we don't take those extra steps. Again, if we chuck in that profoundly autistic label, how meaningful or useful is it? Not really, unless we start chucking in the extra steps. And if we do that, that renders the label meaningless still. further um but you know if we go to a school and they say my child's autistic that means nothing to a teacher other than probably oh look stereotype whatever their their their stereotype of what an autistic autistic child looks like pops up in their head. I've taught seven autistic children over my career, so I know all about the autisms. You know, like how many, how many parents hear that? And I'm sorry to any teachers out there, but that is a very common narrative. Yes. And actually, no, you don't. you knew seven autistic children. That's all you knew. That doesn't mean you know everything about autism or you know how to support autistic children. You just know those seven children. So we're again using this ideology and it is an ideology. We're using this label to weaponize an ideology that people know what they're doing and what they're talking about. But what they're actually doing is just homogenizing. They're not individualizing. They're not looking at individual need. They're not looking at the learning. presentation of someone or the the sensory presentation of someone or the communication presentation of someone they're not digging into the meaningful nuance they're still using this as a That's a box we're gonna put you in so therefore here's our here's our checklist of reasonable adjustments that we give everyone who goes into that box and whether it works for you or not It's and I was gonna bring that up actually in terms of Again, thinking about responses to this label. So reasonable adjustments are completely misunderstood in law by schools and workplaces. reasonable adjustments. So for your child, if your child needs some reasonable adjustments in order to access education, it's not about what school deems reasonable. It's about what your child deems reasonable to be able to access that school. That's how the law is written, but that's not how it is applied.

SECTION INTRO

It's not all rubbish.

Mark

Okay, usually I have a section on the podcast which looks at the positive side of things. To try and keep things upbeat at the end of it. I'm not sure that there's anything that can neatly be defined as positive within all of this because we've looked at everything, right? We've looked at the pros and the cons of all of it, and it's a minefield of, you know, and both both approaches are. problematic and also, you know, have their positives. I don't really know how to pick out a single one out of this. Can I pick one? Yeah, please do. I was hoping you'd say that.

Kieran

The fact that we are having these conversations is, I think, an immense positive because there was a time when these conversations wouldn't have happened. For various different reasons, antagonism, fear, worry about getting things wrong or tripping up or offending someone or things like that. And so I think. that you personally, first of all, are facilitating a nuanced discussion. You know, I think that's incredibly important I'd put some pressure on you to go a step further and maybe see if you can talk to some non-speaking autistic people on the podcast. Yeah, absolutely.

Mark

Okay, let me work out how that would work. Yes.

Kieran

I can put you in touch with some people.

Mark

Yes, okay, yeah, yeah, yeah, yeah.

Kieran

To extend this conversation further, and I think have a. You know, one of the claims that the lady who wrote the article made was that non-speaking autistic people are not given the same platform as speaking autistic. autistic people. And I would absolutely agree with that. I think all of us, particularly as autistic advocates, we have a responsibility not only to learn, but also to platform and to work together and to make sure that all voices are heard. as much as the the white man who can speak voice.

Mark

Yeah, yeah, yeah, yeah. I love that idea. As you say, I've been reluctant to tackle this for fear of getting it wrong. And for fear of of claiming to speak on behalf of people who I don't represent because I only represent my own lived experiences. So I have shied away from having guests on who have uh non-speaking Kids, and that is absolutely not how it should be. And I already have a guest in mind that I'd like to get on who has non-speaking. Autistic kids. So that's, you know, this has opened up that door to me a little bit. I love the idea of getting a non-speaking autistic on. And communicating, that would be fascinating.

Kieran

I don't know logistically how that would work, but um, there's ways and means, and that's that's that's why AAC, alternative and augmented communication is so important so integral to this whole narrative and like that there are lots of ways to communicate that and speech is not the only way and but yeah no I can certainly put you in touch with some people who I think we'd love to come and have a really nuance and to speak to a different audience, especially an audience of parents as well. I think that's such an important thing. To take it away from you, but to take it back to the kind of the broader kind of context. This is going to sound like a weird analogy to start with. But you know, when people like. Celebrities say that they've been silenced and then they write a book and then they get on the front page of a national newspaper and like you haven't been silenced at all. So The fact that, and I'm not saying that this lady has been silenced, I'm not trying to conflate with that, but there is an irony here that she is got a major editorial opinion piece in a major newspaper that has gone absolutely global. So, you know, that is a big shift. That is a big change. And that's something to be celebrated, you know, that, yes, there might be things in that article that I completely disagree with. I'm sure if I sat down with that person, we would find lots and lots of common ground and probably still have differences, but lots of understanding. But the fact that she can do that is a big change because that's not something that happened. before yeah so i think that shift is a sign of something positive and constructive to come out of all of this yeah absolutely You know, and I don't think while the framings might be different, I don't think her arguments are that dissimilar to mine, to be perfectly honest.

Mark

The needs of their own kids, you know, and it's you know, you advocate for them in the best way that you possibly can. So she's done a phenomenal job on that front. Yeah, she's written a very successful article. You know, brought us the conversation to us. And, you know, that's a wonderful thing.

SECTION INTRO

Neurodiversity champions.

Mark

Okay, we'll look at neurodiversity champions now. These are any people or organizations that are doing wonderful things in the world of neurodiversity. Have you got any neurodiversity champions for us, Kieran?

Kieran

Yeah, in the context of the conversation that we are having, there is an organization in the United States called Communication First. who advocate and facilitate platforms for non-speaking, not just non-speaking autistic people, people who are non-alminimal speakers. who have lots of different experiences and they're an incredible organization and they need to be known globally for the work that they do.

Mark

um i'll send you some links through afterwards so that you can obviously share them if you want to but um but yeah go and look up communication first they're an incredible organization brilliant yeah we'll do absolutely thank you so i've got another neurodiversity champion for you

Kieran

I'm going to tell you all about Autism Central. There is a NHS England, so it's in covers England and Wales, funded programme called Autism Central. And it's been running for a few years now. And it was previously run by the National Autistic Society. And I think I can unequivocally say. It was okay, but it wasn't great. That contract came up for a renewal recently. So myself, as part of a much broader team led by the Anna Freud Centre in London, actually bid. for the contract and want it and we want it for the next three years, possibly five years, depending on how well it goes. So what Autism Central is is a peer support network. So parents can access peer support, so trained peer supporters, so you can kind of hold space for them. and signpost them and there's also webinars events and trainings that go on within autism and it's all completely free there are hubs up and down the country where they can access actually physical kind of peer support groups and things as well. All the materials that are going to now be produced are all co-produced and co-delivered by autistic people. So the whole setup and the whole program is run by autistic and otherwise neurodivergent people as well. I don't think there's a single neurotypical people person amongst any of us so there is a huge opportunity for change and i and i know you've you've probably seen some of the the little animations that i've done like the double m

Mark

I'll put those in the show notes as well.

Kieran

So part of the funding is that we get to create Emp a shed load more animations as well. Great, explaining different kind of innovation. Different things, yeah, in different more accessible ways and stuff. And we've envisaged Autism Central as a town. So this is going to be when we watch the animations, you're going to visit regular spots within the town and see regular people within the town. So and the whole concept of this is that we want to create community and we want to

Mark

have safe conversations and hold people hold space for people and be curious and and so so yeah so that's that's the whole thing itself wonderful that sounds so good and that's for parents of neurodivergent kids they don't have to be neurodivergent themselves

Kieran

No, they don't have to be. The peer support is also available. Yeah, it does help. The peer support is also available to autistic people, whether you're a parent or not. And also, obviously, we're setting up streams for professionals and things as well. So it's not just restricted to parents. But to anybody listening, probably there might be an opportunity for some kind of support for you through it. and you can go to autismcentral. org. uk to go and find out more.

Mark

That sounds fantastic. Thank you for that.

SECTION INTRO

Tiny epic wins.

Mark

Okay, tiny epic wins. Now, these are the things that in a neurotypical household would not be considered a big deal. But for our neuroshambolic households, they are epic wins. Have you got any tiny epic wins for us, Kieran? I do. Yes.

Kieran

I've got two separate bits, if that's okay. And one's a little bit about me, but I'll get onto that in a second. So an epic win literally happened as we started recording this this evening. And that's that's why breaking news. Breaking win. So my. youngest Livy came out of school at the age of seven and was nearly destroyed and they are now coming up 13 in March next year. And they've slowly over the course of kind of the last five years have come back to us. made phenomenal progress, they've got physical stuff going on as well, and so but they've got lots of challenges, lots and lots of challenges. and they're making immense, immense progress. And tonight, for the first time, and that's not to say that they haven't been engaging in education, they have, they're a self-directed learner and they have maths and things like that. with tutors and things but tonight for the first time they accessed a young writers group without any support on their own it was online But there were seven strange children in this group that they'd never met before, two strange tutors and just went for it and went for an hour and a half. and wrote some of the best stuff that and then they're an amazing writer like them chip off the dad's block and wrote some of the most incredible stuff in the time that they were they were there so and came out of it absolutely buzzing so amazing it's just i love that it's just yeah i've got goosebumps just just just thinking about it that's incredible just seeing that in

Mark

Enthusiasm about a new thing as well, and sort of not knowing how it's going to go because you sort of see it happening. Oh, please God, please God. Yeah, that's amazing. Yeah. Huge win.

Kieran

I'll celebrate that with you. And the other thing I wanted to, it was my birthday last week, so I'm going to like lean into like this is about me, really. But my kids wrote me a birthday card and I just I just thought it would make your listeners smile. So the things that they have written in here. So three children, three completely independent things that they wrote. So my eldest. He wrote, happy birthday father. Thank you for being my dad. Well and truly thank you. This past year has been turbulent at times for me but you have been there for me throughout all of it. Thank you from the bottom of my heart from that. Happy birthday, Dad. Well done for getting through the last 84 years. Here's to another 47.

Mark

It had to get a dig.

Kieran

It was so beautiful. And then there's so equalizing. So that that that that that that epitomizes my eldest son, you know like wonderful that's very very like Jay actually yeah um and in brackets at the end your favourite child I love it. It's not true. They're all my favourites, except when they're not. And then my middle child, Albie, who is he's just coming up at 14. Quinn, my eldest, is 16 and Alby's just come up. Actually, 15 now. Sorry. Sorry, I'll be. So he's very short and to the point. And he said, happy birthday, father. They always write father in card. They never call it, I'm dad. But happy birthday. Like a very full market. I get that. Or just Mark. Yeah, as well. There is that too. Or other words can apply, which we're not allowed to say about that. So anyway, happy birthday, father. You're getting another year older and yet can't say another year wiser. Oh. Love from the best child. Just love this. They're completely independent of each other. Not even just your best child, of all the children. The best child. But capital B, capital C as well. So it's like, this is the label he's now applying to himself. Yeah, yeah, yeah. This is his role now. And then my youngest, Livy, who I mentioned just before. And they wrote, happy birthday, father. With another year of age comes another year of parenting us, which I'd say is quite the impressive feat. We're all so lucky to have you as a dad and so proud of you for being such a good one. Thank you. We love you, Livy. And I just. Like I I emotions are something which again another thing that I have a problematic relationship with so like I had a feeling When I read these. I mean, I had just hearing you read them. It's just wonderful. And like, it took me a while to identify what that feeling was. And it, and it. And it actually wasn't what they wrote about me. It was my pride for them. Yes. And, you know, like my privilege in being their dad. and my absolute privilege of watching them grow up and playing a small part in shaping who they turn out to be. And I'm super excited to see. Where they go, you know, and and lots of parents kind of look at like their children go through big things or little things and they cry because they're not their babies anymore. Actually, I flip that on its head and I'm excited about the future for them and what they're going to do and like it thrills me to to think where they're going to end up and what the things that they're going to do and and that excites me so So yeah, so that's an epic win for me.

Mark

Lovely. Yeah, that is wonderful. Yeah, I won't get the card that Jay got me for my birthday this year. He drew his own picture on the front. Oh, I love what. And he drew the Grim Reaper. Hovering over a grave. It's like, okay, thanks, thanks, son. Wow.

Kieran

Do you know, do you know, though, actually, this reminds me of something. that I wanted to say that you know when I was saying about the things that that connect all autistic people and and I know that any parent of a non non-speaking autistic child who's going to listen to this will recognize this The absolute, yes, there are immense bloody challenges and yes, there are hugely distressing and tearful moments, but there's also absolute fucking joy. Absolute joy. and laughter and funniness and ridiculousness and that's again just another thing that connects all of us.

Mark

Yeah, yeah, yeah, yeah, absolutely. Absolutely.

SECTION INTRO

What the flip!

Mark

Okay, we're gonna do some what the flip moments now. These are the moments where you're neurodivergent Kids will do or say something that completely baffles you. I mean, some of your tiny epic wins were what the flip moments in one is wonderful. I've got a couple of what the flip moments. Um one is Otto is having trouble eating his lunch lately at at school. I'm not quite sure why he's just coming back and he's not really having eaten it. And obviously that's a problemat problem for him because He's then more dysregulated and more overwhelmed because he's not fed his body and he doesn't sort of, you know, he's got intraception issues, so he doesn't really know when he's hungry until it's too late. So I was trying to work out how we get him to eat. Eat at school and at home, he needs to read while he's eating. He has to have a copy of the Beano or some kind of comic while he's eating. It helps him to, you know, have that distraction. So I said, would you find it easier to eat lunch at school if I put a comic in your lunch bag? Thinking, surely that's a great idea, right? That's going to work. And he went, Yes and no. Yes, because I would, but no, because I won't. It's like, oh, okay, fine. I mean, like. Just nip that in the bud. End that conversation right there. Like, yes, it's a valid theory, father, but no, not going to do it. I'm not going to entertain this. I thought, I thought, I thought I cracked it. Oh, you cracked it. And the other the other wonderful moment I've had is from Jay. And I went to the Orthodontis with him recently. And in the car, on the way back, we were sat in silence for a little bit. And then he just turned to me and he went, Madrid is famous for underfunding its dentists. It's like what? Famous like globally renowned for underfunding its dentists. And the thing is with sometimes he'll say something you think is absurd and then you'll go and then you'll find a little kernel of truth in it. I used Chat GPT to see if he was making it up. Um and like in I put the prompt into chat with GPT and it thought for a really long time. So it had really done its research. But the answer was a tentative yes. So apparently public funding for dentistry is very low in in Madrid, so they are underfunded. Most people go private. So um That's it. The question is, how did he access this information in the first place? Like, how did he come across this nugget of information? Like, what special interest rabbit hole had he delved into? He'd burrowed into this special interest rabbit hole to try and find this nugget of information. Come out, just throw it at me in the car and then refuse to speak any more about it.

Kieran

I do know I think I think that sums up our children perfectly. Is this both astounding and terrifying some of the things that they just randomly say? And you're like, how do you know that? Yeah. Like, where's that come from? We have this perception and many parents have this perception that their children are on their tablets and wasting their lives away like playing games or playing Roblox or whatever it is they think they're doing when in actual fact most of them are fueling themselves for pub quizzes for when they're older that's that's literally what's happening like in the background yeah they might be playing roblox but it There's a documentary about whales that live in the North Atlantic only between the summer months of May and June, you know, like running in the background while they're playing roblox.

Mark

If I enter a pub quiz and there's a fellow team. Called the special interests. I'm out. I'm not going to take part. So, that is the end of another episode of Neuroshambles. It's been a really, really interesting. One. So, firstly, thank you, Kieran, for joining me on this one. I'm going to put a link to the homework that you sent me. In the show notes, because there's some really interesting articles in there that cover some of what we've talked about. And I'll put a link to the New York Times article and all of the other things I've mentioned in the show notes. I should also take the time to say a huge thank you to NeuroShambles listeners for joining me and for spreading the word on the socials. I'm really keen to hear more about other people's tiny epic wins or neurodiversity champions or what the flip moments. So please email me at hello at neuroshambles dot com or you can contact me on the socials on TikTok or Facebook or Instagram or threads. Always lovely to hear from you. Um I think that's it for now. All that remains for me to say is have a nice life.