Seeking help from "experts" | Charlotte Mountford

EPISODE TRANSCRIPT

Mark
Hello and welcome to episode 31 of Neuroshambles. Hope you're all bearing up okay out there, Neuroshamblers. Thanks for coming back to revel in the nonsense with me. We've got a cracking show lined up where I'm going to be talking to a new guest about a topic of the week that Potentially, some of you might find a bit triggering, but we're all in it together, so it might be cathartic for you as well. Who knows? We've also got the old Classics, neurodiversity champions, tiny epic wins, and of course, some what the flip moments. There's even time for a cheeky round of poetry corner as well. So hang around for that if you can. I'm going to stop whitering on and we can crack on with it. Meet the guest. So, my guest this week is someone who's been a listener of Neuroshambles for a while now, and she wrote in recently to suggest a topic of the week that she wanted us to cover, which I really like the sound of. I obviously invited her on for a chat and she accepted. As well as being a parent of multiple neurodifferent kids, she's also an educational consultant who specializes in autism support. and she has over twenty years' experience of teaching in both the UK and overseas, so a wealth of experience, and I am delighted to be able to welcome aboard. It's Charlotte Mountford How are you doing, Charlotte?

Charlotte
Hi, hi there. Yeah, good, thank you.

Mark
Um now, obviously, you know the format. When anyone comes onto NeuroShambles for the first time, we need to learn a little bit about your setup. So, what Neuro-shambolic chaos have you got going on at your end?

Charlotte
All right, so we have, let's run down, we've got James who's seventeen, then we've got William, who's fourteen. and Andrew, who's thirteen, and then there's myself and my husband. That's the household.

Mark
Three teenagers.

Charlotte
Yeah. Yeah, we've just hit that status where they've overtaken the adults in the house.

Mark
Okay.

Charlotte
So James is the only one who failed his autism assessment.

Mark
Like a driving test.

Charlotte
Yeah, basically we rig him for this quite a lot because he's he's very bright and has like done his GCSEs and everything now and has passed everything that he ever takes as far as exams go. But the autism assessment is the one thing he failed. So he was kind of let down a little bit by the system of that, insofar as the school he was in at the time didn't really know him very well. And that whole system of needing evidence from more than one environment meant that whilst we had evidence at home and the team that assessed him had evidence from the assessment. They didn't get good information from school, so he got this wishy-washy report that says he clearly has some social communication differences that may seem like similar to autism, but we can't actually say autism. So okay.

Mark
But you know, between us He's autistic, right?

Charlotte
Yeah, and you know, genetically, when you've got all the rest of the household, probably.

Mark
You know, you know a lot about autism, so I presume that you're just kind of just taking it as restrictions.

Charlotte
Yeah, and I think he also now is at a point where he Recognizes that he's very similar to his siblings and has similar strengths and similar difficulties. And we have said: look, if you ever wanted to go through something again to get that written on paper, if that's ever useful, we can do that. But at the moment, he's in a place where he just he knows how he works and it's not really relevant, so that's fair enough.

Mark
That's great.

Charlotte
What a great place to be.

Mark
I like the fact that you tease him for being a normie. even though he's not. Because I get it in my house. My kids are constantly Taking the piss out of me for being neurotypical. And I think that's the really positive thing. It's really, you know, I love the fact that they embrace it so much. It is who they are.

Charlotte
Yeah. Then William, who's 14, is diagnosed Autistic, and Andrew, who's 13, is diagnosed Autistic as well. I probably would think there's ADHD there as well for him, but. Again, at the moment, we're just not really ready to go back into the fray of anything to do with that.

Mark
I totally understand that.

Charlotte
And then I'm on the wait list. I've been on the list nearly a year now. uh for an autism assessment myself, and I've spent the last month attempting to get a GP appointment to query whether I could go on. It's for ADHD as well.

Mark
But I can't even get the GP appointment at the minute, so you know, we'll just see where that goes. Okay, so you're just nestled somewhere in the system.

Charlotte
Yeah, you know, in your own mind.

Mark
I presume that you just identify as neurodivergent.

Charlotte
Yeah, fine. And then my husband is the one that's query and neurotypical.

Mark
Okay.

Charlotte
When we were first sort of querying, do we think we need to go anywhere with this for them? we would sit on the sofa in a night time and look at each other and go, So is it you or is it me? Where have these jeans come from? It's gotta be one of us Or maybe both, who knows?

Mark
Okay, so yeah, thank you for introducing me to your setup. Let's crack up with the topic of the week because it's a really interesting one, and hopefully, it'll be a fun one to do.

SECTION INTRO
What's the topic of the week?

Mark
Okay, so this week's topic is something that I was interested in because I think, in the midst of the everyday chaos of raising neuroexceptional kids, there's something that is quite easy to lose sight of, I think, and that is that while we're doing everything that we can to understand and support our kids' individual needs, we End up sort of almost accidentally consuming so much information and seeking so much advice and trying so many different strategies just to try and get something to work. Not all of it works, but. we give it a go. But at some point, I think we inadvertently become the experts in our own children, the people that know the best about what they need when it comes to their individual accommodations. And from my own point of view, I didn't at any point intend to be an expert in this. I'm just trying to get by, you know? Like the very first episode of Neuroshambles, I've always said, like. I'm not an expert in autism by any means. Like, that's not what this is about. This is about sharing experiences and stories. But I am, I think I can claim to be, along with Tam, the Foremost authority on my own kids. And that's all I can talk about. And I'm happy to talk, you know, for many episodes of Neuroshambles about that. But I don't think of myself as an expert. If you think of it in terms of expertise, it would make for a very niche mastermind episode. Yeah, absolutely. When India is overwhelmed, seething with rage and situationally mute, what is the quickest way to get her regulated again? Ah, I know this one.

Charlotte
I've got this one nailed.

Mark
YouTube videos of red pandas eating grapes and a long bath. Correct! I'd love that. So, obviously, as you've suggested this, I'd get the impression that you've sort of on a Similar wavelength to me, and that you've been on this journey for a long time, and it's something that you realized a long time ago. That you hang on, I am the expert here. Yeah, is that how you feel? Yeah.

Charlotte
And I guess I kind of came at it in a slightly different way to other parents insofar as I was working in the autism field already. So in that way, I was an expert on generalized children, you know that sort of expert. And then when we started to try and bring up the could our children be neurodivergent with you know the health visitor initially, you know, because our middle one, I really knew from when he was very little there was something different going on. And we went to the health visitor and sort of said, Look, could it be anything around autism? We've got these concerns. And what I ba what we repeatedly were told were, you know too much about it, you're seeing things that aren't there. Oh, it's that that old logic of yeah like honestly everyone we spoke to the nursery staff then the Senko at school then the teachers you know everyone And it used to drive me mad, you know, I'd say to them, But hang on, if an optician took their child to the opticians and said, I don't think They're seeing as well as they used to, they're getting headaches and they're asking to sit at the front of the classroom. No one's going to turn around to them and go, No, you know too much about eyes, there's nothing wrong with that child. Off you go.

Mark
You're bound to say that, yeah.

Charlotte
It's the weirdest thing.

Mark
Yeah, that is weird. Yeah, so you're you're you're actually kind of hamstrung by your own expertise at that point, absolutely.

Charlotte
And even then at that point, we had an older child who we hadn't ever thought it of at that point in time. And even saying that, you know, to them, well, actually, we've never considered it with this child, but we really do feel that there may be something. No, that still was You're making it up because you.

Mark
Was this after the first one was diagnosed?

Charlotte
No. No.

Mark
So none of them couldn't get any of them from the other.

Charlotte
No, no, none of them had been diagnosed. So William, the middle one, was the first one that I really I I just knew. He was probably four, six months old and all his reactions to things were so different. And he'd cry and scream, but he didn't want comfort, he didn't want to be held close, he didn't want food, he didn't all these things were so difficult for him. Whatever sensory experience was going on for him was obviously Massively overwhelming. Yeah. And yeah, but it was just constantly no, because you know about it, you want it to happen. I d I don't know. It was such an alien thought that it was just like, I don't understand why you think I would be seeking this if I didn't genuinely feel it.

Mark
Yeah, exactly. Exactly. There's not any social kudos to having autistic kids, is it?

Charlotte
Yeah, and I think that's what comes across with so many parents that I speak with and work with now. That same narrative of almost you want something. Like that whole narrative around EHCPs is often, oh, you're like you're going after the gold star and it's like I don't think that is a gold star. I just want my children to have the support they need, you know?

Mark
Yeah, it's nonsense. And the thing is that as parents of neurodivergent kids, there are so many experts. So I made a quick list of the people that we are reliant on for support for our kids, right? So you've got teachers, obviously, SENCOS. You've got SEN specialists, teachers, GPs, occupational therapists, local authority well-being services, educational psychologists, psychiatrists, EHCP case workers, speech and language therapists, pediatricians, sleep nurses, social workers. family support workers, front door for families, play therapists, drama therapists, ASE specialists, TAs and EOTAS tutors. Right? That is not an exhaustive list.

Charlotte
No.

Mark
It is an exhausting one.

Charlotte
Yeah, but there's more.

Mark
But if you think of all the interactions that we have had with people who are there to help us, it's dizzying.

Charlotte
Absolutely.

Mark
What you don't realize early on in your journey, but these are the gatekeepers to the support we need. And you won't get a diagnosis without at least some of those people being involved. And you won't get accommodations from CAMHS or from whatever other support that you need unless you get these people on board. And not all of them Know what they're doing. I don't want to be unkind, obviously, but I don't know how to phrase that in a better way, basically. But not all of them are as expert as they need to be to kind of spot. the things that you spot in your own child, I think is the better way to do that.

Charlotte
Absolutely. And I think a lot of them, that's because they're not only coming across autistic or neurodivergent children. You know, when you're thinking about speech and language therapists, yes, you might get a specialist one. down the line. But when you're first getting involved, they might work with children with all sorts of differences, you know, from speech sounds that need working on right through to feeding difficulties and all sorts. Speech and language therapy covers so such a wide range. So I guess they're never going to be specialists in everything they come across. But some of the information that's out there, or some of the information that they hold on to Just seem so outdated, even on like a basic level. Some of the stuff that comes across, you're like, well, you You don't know autism if that's what you're still thinking.

Mark
Yes.

Charlotte
Yeah.

Mark
Hashtag not all experts.

Charlotte
Yeah, absolutely.

Mark
Absolutely. Might say that more than once in this episode. But I think the point is that we're so reliant on these people for help. And, you know, in the background, while we're waiting for this help and while we've filled out forms and done admin and waiting for things to come back, the very long waiting list, all this time, we are doing the reading and we are. Listening to because you need to.

Charlotte
Because you can't get through each day without knowing something that's going to help. Yeah. Yeah.

Mark
Because you want you want to help your kids. But like first and foremost, you want to try and understand them and accommodate them. So we're doing all the research. And o over time, you sort of you're building up this knowledge. And I think there is a moment as a parent when you're in front of someone that you're relying on for help and the realize the realization hits you that you actually know more than them about what your child needs. That's a weird moment. Did you remember having having that moment? You were the expert first, I guess.

Charlotte
Yeah, although not so our youngest has quite a different presentation and when we were talking about assessments for him I wasn't certain which route that should go, whether it should be ADHD we looked at, or whether it should be autism. So those discussions were quite different. But yes, that whole sitting there and thinking I've read more about this or I've researched something more recent, and you obviously aren't on that same wavelength of where I am. It's it is a really weird point in time where you think I need you on side because I need this to move forward, but I'm not sure where you're at.

Mark
It's how you navigate that moment without. Without wanting to be a dick about it, basically go, Well, actually, I think you'll find I've read more than you. If you consult page 29 of the Diagnostic Manual, you don't want to be that person. So it's a tricky one to navigate. What is an expert, right? I've looked at this because obviously what counts as being expert? Now, Malcolm Gladwell, I don't know if you've read his book, Outliers. Very good. Malcolm Gladwell basically says that it takes 10,000 hours of doing something to be an expert. Interesting. I did the calculation. Oh, great. I love it. Because Jay is coming up to 12, right? So that is over 100,000 hours of practical training in him specifically. Now, if we allow for the fact that we Probably didn't really know what was going on for the first five years. That's still 50,000 hours. So, actually, I am massively overqualified for this job. And I still don't have anywhere near the expertise that I need in order to make all of the accommodations I need. So how can you expect someone else

Charlotte
Yeah.

Mark
To be the expert, specifically in your child.

Charlotte
Yeah. And I think that's what is really hard, isn't it? Because autism is just, I think, one word that describes so many different stories, you know. every single person, family that you come across, it's slightly different. So how do you expect someone who hasn't had that time to to recognize that. Yeah.

Mark
And that's when as a parent you sort of learn that you've got to advocate for them yourselves. You have to be that expert. For them without being pushy about it. It's such a fine balance, and getting that right is really tricky. It doesn't always start out this way as well. Like I say, there is a journey to get to that stage. But Before your child is diagnosed, well, certainly from my point of view, because I didn't really know anything about autism. So Tam was much more aware than me. And I've got an episode that is going to be coming up soon where I'm going to be talking with Tam. About the diagnosis journey for all of our kids. Spoiler alert, they're all autistic. Tam was on it quicker than I was really because I didn't know what autism was. So um I just assumed that I knew. It's like he's not autistic. Look, he's Chatty, and you know, he's boisterous. I don't know what I thought it was. I'm sorry, all autistics listen to this. I didn't know. So, when you start out, you're looking to people for the answers. Because I didn't know anything. And that's a quite a vulnerable position to be in, I think. You're looking for someone to give you the kind of the answers to the conundrum that is your child. Because you don't know what necessarily is going on with them, but you know that it's different f to what's going on with a lot of their peers.

Charlotte
Yeah, absolutely.

Mark
So you obviously decide To get help, right? You mention it to someone for the first time. And like the experience that you had, if they don't recognize it, they're the gatekeepers, right?

Charlotte
So they just slam the door in your face. You're like, oh. And it's really hard. that's a really, really hard experience. Even as someone you know, I thought I did have a really good idea of these things and I'd supported families with it and parents with it and education staff. And to then have someone say No, we don't see that. That's not what it is, was a really hard thing. And then you're kind of well, for a long time we were in that position of So should we just treat them as though he's a neurotypical? Should we are we doing this all wrong? If every person we've talked to about it is saying no? Maybe we are wrong, and maybe we do need to deal with it as if he's a neurotypical. Yet, every time we do that, we know it doesn't work, then it goes wrong.

Mark
So, this is the thing, right? You are you at this point. are an actual expert, right? You've done a lot of learning about autism and supporting autism. And if you're the second guessing yourself, what hope have the rest of us got who don't actually know anything? And that's in it. And the upshot is either your kid's just Fucking oddball

Charlotte
Which is always an option.

Mark
It's actually true. It's either that, or you're a shitty parent. Yeah. Neither of them is anything that we want to countenance.

Charlotte
I have no idea if it's a very British thing, but you just always assume that the experts that you go and seek out are gonna know. So when someone in that position has turned around to you and said, no, I don't think it is that or you're barking up the wrong tree, I just I really did take that on board and think, oh, well I'm probably shit at my job then because this is what I'm saying. And I'm shit as a parent. Oh, great.

Mark
I'm like, yeah, excellent. Yeah, that's a nightmare. And this is the thing, right? There are some jobs that you can just Fucking wing it, right? When I was a teenager, I used to work at Dixon's, the electrical stores. Do you remember those?

Charlotte
Yes, yeah.

Mark
They just pushed me out onto the shop floor. I didn't have any training. I just made it up. And now that is fine. You can get by. selling C D Walkmans that way, right? But this is access to to education. But this is seismic in terms of its significance. You don't want someone who's just gonna Just wing it. It's so important. And that's so disheartening when someone doesn't quite know the answers, but is very confident about that.

Charlotte
Yeah, absolutely. And it's the fact that that's not an unusual experience when you talk to families with neurodivergent kids and I would say more often than not, you hear that when you initially brought it up, it was shut down in some way. Whether that was with family, whether that was with an expert, whether that was with a teacher, it's kind of that immediate Knee jerk, bat that away. We don't want to talk about that.

Mark
Let's not go there.

Charlotte
Yeah, because we had that experience as well. Like you say, we're not the only people that have had that.

Mark
I think that is the vast majority of people's experience when they first sort of seek help from the experts, which if nothing else, prepares you for the long and arduous battle that you have for the rest of the journey. Like get used to this, guys.

Charlotte
Yeah. I really hope it's something that starts to change though, because I think it is that innate people don't want there to be something wrong in inverted commas. So it's that, no, no, everything's fine. Yes. And actually, maybe as there's a bit more positivity around things, maybe that'll fall away a bit more. And I understand some parents might be really upset when they're bringing that up, you know, initially. But that's what I kind of found strange: that actually we. Went into it with a, you know, I did know a bit about it, and I didn't think it was a negative. I just wanted to know how best to support him. I could be quite happy with it. It wasn't an awkward thing for me to talk about, but yet still that was the reaction.

Mark
There is definitely that. When you tell people, they go, I'm sorry.

Charlotte
It's like, why? Why?

Mark
It's just silly art. I think most people's entry point into this experience with experts is with teachers. Yes. Typically, I think. And the issue there is that It's a lucky dip. It depends who you get. And it's not just dependent on who it is and how aware they are of neurodiversity. But there's like issues of like how much does your child mask at school? Because you may well be seeing stuff at home that they're not present like which is very different to how they present in the classroom. Or how does the school accommodate neurodiversity? Whether the SENCO is any good, or how many other kids there are with needs in the class, or whether you ask the teacher at the wrong time and they're just really busy and they just like push you away and like Teachers that are older might not have the energy or the inclination to take on newer teachings about neurodiversity. There's so many different facets and variables to the first person that you tell that information to. That I think is why there are so many different experiences of it. Because we had the flip side with India, India's teacher that we first told was neurodivergent. So she was diagnosed ADHD. So I was like, yeah, okay, I got it. I see this.

Charlotte
Amazing.

Mark
Yeah. So it's like, yeah, I was kind of wondering and was really supportive and really obviously because she She, I think, had a horrible time when she was at school and recognized that and didn't want any girls. It was like a personal mission of hers, I think, that didn't want any girls to go through that. So made sure that she was aware of the signs and was hugely supportive. And that just depends entirely on who you get at the time.

Charlotte
Absolutely. And I mean, in general, there is not enough training around any neurodivergence in teacher training. I mean, I did my teacher training like over twenty years ago now, but I know it's still very similar. We had a half day session

Mark
on special needs in the whole course.

Charlotte
One half day, covering anything and everything.

Mark
Did you get a quiz at the end at least?

Charlotte
Um not that I remember. No.

Mark
God, not even a quiz.

Charlotte
And and I mean, yeah, it's very similar now for teachers who do the like one-year PGCE conversion. That that's it, a half day. Well you know, what can you capture in that? It's no surprise that that's then challenging for them to recognise that need, but also to have those conversations with parents, you know, as a teacher trying to bring that up from their side. That's a very difficult thing to do as well, isn't it?

Mark
And like you say it's because it's not their fault.

Charlotte
Yeah. Do you know what I mean?

Mark
It's like it's it's it's absolutely not their fault. They're just not having the the training and the support that that they need for this because There's so much to cover.

Charlotte
There's so much to cover.

Mark
I'm still learning and I've been immersed in it for years.

Charlotte
Do you know what I mean?

Mark
Yeah, it's really tricky.

Charlotte
And then I think also the other s slant on that is that a lot of Teachers are then worried: if we have that conversation, what can we actually offer as support? You know, because budgets are tight, we haven't got space or this, that, and the other, you know. If we have to offer support, how are we going to manage that? And it's that juggling act as well.

Mark
Yeah, but I'd much rather them support your hypothesis or at least entertain your hypothesis and then say, but Can't do much. Just, you know, here are some resources.

Charlotte
Yeah. Or here are the next steps at least. Yeah.

Mark
Yeah, because that first question, when you first go to them for help and you don't know stuff, to have the door closed in your face at that point. is so damaging, I think.

Charlotte
Yeah, massively, massively.

Mark
But we're made of sterner stuff, aren't we, Charlotte? We'll keep going back. It galvanizes us. In the early days, I think I had imposter syndrome a little bit in that I didn't think I knew what I was talking about and I thought maybe I'm making it up and I'm just sort of testing a theory or maybe I'm a fraud. So every time I spoke to a professional or someone that was there to help, I was really nervous and a bit timid and I didn't really ask questions or challenge them. I mean, again, it's possibly not your experience, but I'm sure. The experience of a lot of other people listening to Neurochembles.

Charlotte
Oh, yeah, absolutely. And actually, I think we went for so long. So William, who was our first diagnosed, who I had wondered about from when he was four, six months old. He didn't actually get his diagnosis till he was nine. So that was a long slog of a battle of trying to get people to listen. And I think because we were so excited.

Mark
Getting trying to get a diagnosis for him?

Charlotte
So, well, so we first queried it with the health visitors when he was six months old.

Mark
Jeez, that's like eight and a half years of slammed doors in your face.

Charlotte
So, because we were so undermined in that way. I did start to be exactly like that, to doubt everything I was saying or suggesting, because no one belie seemed to believe any of it.

Mark
Yes.

Charlotte
And he did mask at school. You know, he was that child that was very quiet, very just wanted to do the right thing, wanted to blend in. So we did have that difference between home and school. But yeah, it meant that I did slowly start to become much quieter in appointments. I don't know whether I should say these things. I don't know if anyone's gonna listen to any of it. Yeah, I've tried that.

Mark
They didn't listen.

Charlotte
No one did listen. So, so hard.

Mark
Yeah, it takes a while to build up. the sort of the armor to be able to go, No, you know what? I'm going to speak out. This is something that Heidi Maver mentioned in um the the honesty episode of Neuroshambles Us of, like, when you go into a meeting, know exactly what you want out of this meeting. Because sometimes I think they just expect a chat.

Charlotte
Yes.

Mark
And you're like, right.

Charlotte
I've come here for a reason. Yeah, exactly.

Mark
This is what I want out of this meeting. If you don't have anything you want, just give me what I'm and we can end it. Which I love. But again, it takes so long to get there, to get to the point. where you know enough about your child and what they need and what is going to help them to then be able to kind of state that and to advocate for it.

Charlotte
And also to know that you've been to that many meetings where nothing really happens.

Mark
Yeah. Like and where there isn't really an outcome.

Charlotte
And then you're like, hang on, what what was that all about? And actually, once you realize that, then you do get better at going, hang on Let's get something from it. If I'm taking time off work, going along, doing whatever.

Mark
Let's actually get something productive. Because there's also those meetings you go to and you think, well, that went well. I'm sure there's going to be a help on the way after that. Oh, yes. You walk away and go, Well, they said they're going to email me. So you get home, you check your emails straight away. Surprisingly, nothing. I've just saw they're busy. You know, four years later, nothing.

Charlotte
Nothing.

Mark
There's another thing as well that I think is worth highlighting: is that We know how much is riding on these meetings. We have waited probably months to get the meeting in the first place, and we've gathered all the stuff that we need in that meeting So to then have someone who doesn't know as much as you about your child. I'm not saying about autism in general, but about your child, that when they don't know that, it's so frustrating and it's so daunting and there's so much writing on it that it's You just sort of wither. I don't know. I've had those meetings where I just went in with all the best intentions of going, like, banging on the table and going, This is what I need. And you just kind of shrink because it's like you're not getting it. And you don't like me. I don't know, and I hate that feeling.

Charlotte
And I'm sure other people get it as well. You sort of shriek in your chair a little bit and you feel like a kid. Yeah. And that whole the fact that you have to portray the most negative aspects of your child to get the message across and to get any progress. And Doing that time after time is just bloody depressing, because actually my kids have got great aspects to them, but no one ever wants to know any of that And I've got to make it sound like an absolute continual shit show for anyone to actually pull their finger out.

Mark
Because if they see the positives Then they're like, ah, you see? You see, he made eye contact. So what are you talking about? You know, he's got a rated great vocabulary. What are you on about? It's like. Yeah.

Charlotte
Yeah.

Mark
So obviously it's not always a a a positive experience when you're trying to speak to people about your kids' accommodations and and their needs. Obviously when you go into these interactions, there's always the background hope that there's something that you're missing. You know, that like, maybe you've got an answer that I've not thought of.

Charlotte
Yeah.

Mark
Great. I'm all ears. I'm listening. Is there a a strategy or a technique that I don't know about that's going to make the difference. We all love the magic bullet, right? that's going to resolve all of that. So you can't write off the experts. So you go in with an open mind, fresh faced, keen, eager with your little list of things that you want to cover. So often I'm left disappointed after those meetings. I presume you've had the same, right? Well, you have for many years.

Charlotte
Yeah, absolutely. And that come down of there isn't. a golden nugget of information that's going to solve all of this, but also you're not going to give me anything that might support me. You know, it's that kind of jewel. Okay, so you haven't got a solution, but you're also not supportive in any way, shape or form.

Mark
Yeah, it's a unique level of disappointment, I think. Like I'm not trying to overdramatize that, but you're just like, I just want someone to help. Me, I've fight I've waited so long to get in front of this person. So hopefully they're going to help me. And then you have that meeting and you come out of it just going That was just a waste of time. And like, it's that moment in the car. Do you like where you sit in the car and you're just like, you're so deflated? And you've got to drive home and just go, well, that was. Nothing's changed from that. Now what? I've now got another fight to get in front of another person that I'm hoping to help me. Yeah, absolutely. And those bad experiences can be so disheartening.

Charlotte
Yeah. Have you had like any particular one stick in the mind? So I have one particular memory of we'd waited a long while, probably three, four months. for a pediatrician appointment, and this was going to be an initial appointment to see if we put you on the pathway for assessment. And The pediatrician sat there and we talked through various bits of history and this, that, and the other, and William was in the room playing with cars on the floor. I think the pediatrician spoke to him twice and then he finished the appointment by saying, Well, we won't put him on the pathway yet, we'll wait and see, because he's given me good eye contact and he's showed interest in the age-appropriate toys. His interest in the age appropriate toys was taking The wheels and axles off all of the cars to see how they went back together and how they fitted back on.

Mark
He wasn't playing with them as cars. Yeah, yeah, yeah, yeah.

Charlotte
You know, great. He was loving life. But yeah, because he'd given good eye contact and he was playing with age-appropriate toys, we'll just wait and see.

Mark
But it's what he's doing. Look at what he's doing with those age-appropriate toys.

Charlotte
I mean, dude.

Mark
And how long ago was this?

Charlotte
That was probably 10 years ago.

Mark
I'd like to think that people's understanding of autism has evolved over that time, but. That's just yeah, that is so staggering, isn't it?

Charlotte
And it was the fact it w it wasn't a no, it was just a let's wait a little bit longer. And you know when you just think How many times do we have to wait a bit longer?

Mark
Yeah. Yeah, just kind of kick this can down the road for a little bit.

Charlotte
Yeah, a little bit further.

Mark
And meanwhile, you're just looking for answers to what you probably already know.

Charlotte
Do you know what I mean?

Mark
Yeah. you know, I I remember my my lowest ebb so far. I mean, I'm like let's not rule out let's not rule out further disappointment. But the what my lowest one was when I was my absolute lowest point with Jay. I was really worried about him. He was in burnout, I think we recognize now. And there was a pottery thing that was organized by a mental health charity. So I was like, I'll go there. I'll take Jay. And the idea was that, like, we'll work with your kids to do some pottery and then you can talk to a mental health support worker. And I was like, that's just what I need. I really need that right now. So I tried to get Jay to go, and it just kicked off massively, and he refused to go. And I was like, but I need this. I need to talk to someone. So I went on my own, basically. I went on my own and I turned up and I went, I don't have a child with me To do the pottery, he didn't want to come, which is part of the problem. And the guy went, Okay, but how are you doing? And I just burst into tears, like absolutely just started crying. And he was like, Okay, well, come and talk to me about it. We went in a separate room, and I just laid it all out. He listened to all of it, and it was, you know, we were in a really bad place, and it all came out. And I got it all off my chest. And then he was like, Well, there's some things that we could do and like, you know, and you could do this and we can offer this. And I was like, oh Someone's listening to me. Someone's... Okay, like, well, there are things because I just, you know, when you're at that low point, you think there's nothing. There's nothing. I've reached the end. I'm like, the bucket is empty. And he was like, yeah, right. Give me your email address and I'll follow up and I'll send you an email with all of this information. And I was like, great, fantastic. I have never heard from him again. To know who he was because I wasn't in that place.

Charlotte
Yeah, yeah.

Mark
I was like, and I didn't take notes. I was just like, this is just all out. And I never heard from him again. It never happened. It's like. So days after that, I was just like, No one's coming. It was, yeah, so that was a pretty rough moment.

Charlotte
It's really unbelievable, isn't it? Things like that. because you read the awful news stories that have resulted in deaths and actually it's things like that that have led to it, you know.

Mark
Yeah, and I'm sure he's busy or he lost it or whatever it is. There must be reasons. You know what I mean? He didn't go in there thinking you know what, I'm going to Fuck him up, yeah.

Charlotte
Absolutely.

Mark
I'm sick of him crying on my shit, my sofa.

Charlotte
And he didn't bring his kid for the pottery. Well, get him.

Mark
Exactly. I don't think he's got a kid. It's all in the middle. He just wanted a biscuit. Yeah, so that, I mean, fortunately, I'm in a much better place now because Jay's in a much better place. You know, we managed to find help from elsewhere. But that was. You know, when you think help's coming

Charlotte
and it's just not, yeah,

Mark
professionals can really make a massive difference if you've got a supportive professional, but also they can definitely make it so much worse.

Charlotte
Yeah.

Mark
I don't know if you sometimes find yourself in a position of thinking, I know more than this person, but I'm just going to let them get on with it and find out for themselves. When it's with our kids, right? Have you heard that? Where I've seen Otto with some occupational therapists before, and I'm like, This is the you're going down the wrong avenue here. He's not going to engage with this. And you sort of mention it like, Oh, we'll just try it. I was like, All right, off you go. And they're trying to get him to describe his feelings. This was, I think, I covered in another episode. They were like getting these feeling cards out, going, Why don't you label your feelings? And he was like, Bored, angry. I was like, I mean, I did tell you, he wasn't going to engage in this. But maybe it's he was engaging in his feelings, to be fair. I mean, that was the most accurately he's labelled his feelings for a long time. Maybe they were experts and I just didn't realize at the time. Like the the issue is sometimes that telling a professional that they're wrong is So difficult, or that there's something that they're not maybe aware of, or that you've done some reading they haven't. You can't exactly like slide a book across the table and go, read that, it's really good. And it's like a new book, or anything like that. The way you then have to broach it is so difficult to navigate.

Charlotte
Yeah.

Mark
It must be even harder for you because it's like you're pulling rank if you do it because you are a professional.

Charlotte
Yeah, and it can definitely feel like that. and I don't get the balance really very well. I either go in, all guns blazing, and they probably just think I'm an absolute arsehole, or I end up not Getting the point across at all. I'm not very good at getting that balance. We've got that a little bit. Well, it's died down a bit now. He's managing better. But yeah, Andrew, the youngest, he is fueled by anxiety a lot of the time. but how he expresses it is massively angry. So he is a tipper of furniture, he is a you know hitter, kicker that's how his anxiety comes out. But if he doesn't know that something's coming, that will lead to a rage from him. And getting that across to the Senko in his school that He doesn't need anger management. He needs the anxiety cutting down. Yeah, if he's not getting anxious, you won't see the anger.

Mark
Yeah, you're dealing with the symptom and not the cause. Yeah.

Charlotte
And they couldn't correlate that. And I was like trying to send, you know, bits of research about How anxiety might come across in different groups and different leaving it on the table. Yes, just taking it in with me, printed out and just leaving it there.

Mark
As if they're PDA, and it's like, oh, just You know, just left this literature lying around. You might be interested in it.

Charlotte
Yeah, you might have an interest in this.

Mark
Did they pick up on it?

Charlotte
They have managed it much better, and he is now in a much, much better place. But it did come to a head a bit about it because, you know, they would raise. And say, oh, you know, he's trashed the whole classroom, this, that, and the other, and he's made a choice about it. And you're just like, but what's gone on before that? I understand that that outcome isn't good for anyone. I totally understand that. but you're missing where the build up's happening probably by quite a long time.

Mark
So it's just yeah, similar to what I was doing with Otto's school. Not not that he's a tipper of furniture. He's like he he will just melt down. He'll just be in incre incredibly high anxiety and he'll, you know, just clam up and and cry a lot. So, yeah, again, it was like, here are all the triggers. Here are all the things like he had a substitute teacher that you didn't tell him about. He thought he was going to be playing football at break time, but on Mondays, it's now uh not possible on that particular playground. You know, just so many different triggers that I was able to tease out of of Otto to then be able to say to his school This is what was going on. This is how you do it, isn't it? I don't know how that was received. I just sent the email. I think it was all right. It did again, but then I'm because I'm not an expert, maybe that is seen I don't know. No, it's because I have the good relationship with the SENCO now.

Charlotte
Yeah.

Mark
Because Jay broke that ground for us before Otto came. Like Otto is much easier to kind of handle in a different way.

Charlotte
Yeah. And I think what also came through regularly with us was that because Andrew's bright and appears like he's getting it, so one thing that frequently caused difficulties

Mark
was wet playtime and it's having to stay in.

Charlotte
And you know, they I would say, well, did anyone prepare him for the fact it was wet playtime? Or has it just got to the end of the lesson and you've gone, it's wet playtime, stay in?

Mark
And it's not just him staying in, it's everyone staying in.

Charlotte
Everyone, yeah, and all that goes along with that. And they would say things like, Well, he can see it's raining outside. And I was like, yeah, he can, but he won't necessarily put those two things together. And yes, he might have got. Everything right in his last maths test. That's not what this is about. This is a different difficulty, and he needs that support, even if it's pissing it down with rain when he first arrives in the morning and isn't going to stop all day. you are still going to need to give him support with that.

Mark
He's not just going to twig. Yeah. So it's striking that balance to tell them. But it's about be you've got to be firm but calm. and respectful and because otherwise they think you're the problem.

Charlotte
Yeah.

Mark
And sometimes actually having that knowledge, you're not sure if it works in your favor or not. You know, I spoke to Danielle Jata-Hall. in the medication episode and her story was heartbreaking about like when she was sort of that maybe we could try medication and or like they just they accused her of having fee which is fabricated and induced illness. Making it up for for reasons who who fucking knows why why people would would do that? But that that was the go-to, you know, for them. So because she knew too much and and You know, it's such a fine balance to get. And again, I think it's so dependent on the person that you're in front of at that time and what their experience of the world is and their experience of neurodivergency is and their access to

Charlotte
the learning around it it's such a lottery isn't it absolutely absolutely on the positive side though there are people there are

Mark
Experts who are amazing, and when you find one, you cherish those, goddammit. You keep onto them, you get their phone number. you know, you m you ask for them by name, you make sure that you build that relationship with them because it's so important. E So on our positive side, 'cause I think we do need to sort of champion the positives, our GP has been amazing. So, you know, I was talking to Tam about this before we recorded and Tam said a similar time when I was being completely ignored by mental health support workers, Tam went into the GP and was Just desperate for help because it's like, we don't, we've tried everything, we really have done a lot of research and tried to work it all out and laid it all out, and the GP just scooped him up and just wrote a letter and not just wrote the letter that was going to get us referred, but followed up that letter as well to make sure he'd gone through. didn't have to do that, but made sure that that was happening, just making sure that stuff progressed. And also, after doing that for Jay in the same meeting, then asked Tam what support they were getting. you know, of going of just recognizing that it's not just hard on Jay, it's hard on all of us. And what support was Tam getting? And Tam, I think just sometimes to feel like you're just being supported and heard by an expert is phenomenal, and it's really important. Have you had have you got any shining stars in that world?

Charlotte
Yeah, so we've got well, I've got two. One along a similar lines, our GP actually when I went for my own referral, I had heard so many horror stories from adults who'd gone to try and get referred for an autism diagnosis. and I had written script and verse to take in with me so that I wasn't going to be knocked off track. And you're going to give the right answer, otherwise it's not going to go to my script. But the GP that I saw, who I hadn't seen before, was amazing, listened to all of it, got me to fill in the paperwork that I needed to there and then she said, you know, normally people get sent away with it. I want you to do it while you're here, so I've got it all and it all goes. And then she said, you know, if you need to see me between now and whenever this gets picked up, ask for me. I will make sure I can get you an appointment. She's actually since moved surgery, but she let me know that she was moving surgery, so I've been able to move there as well. I mean, like unbelievable. So that was, yeah, incredible. And then For William, when he moved to high school, he in school will just shut down if things go wrong and will just be unable to communicate, unable to speak. and the very first drama lesson he had, just that happened. And it was within the first week of him being there and the Send department just literally scooped him up out of the lesson, took him to the Send department. He still wouldn't speak to anyone, but he stayed there all morning they got him snacks, they got him drinks, they just made him feel safe. And they let us know that it happened, but they let us know that he was okay and they encouraged him to text us if he wanted to, so that he had that communication. And then the Senco just got on the phone to me in the afternoon and said, if you find out what the crux of the issue was, please let us know so that we can work with that. The crux of the issue was drama was a no-go. He did not want to do it. He had no interest in it. It was not happening. And when we let the school know that, they just said, Okay, well He doesn't have to do drama then, and that was it.

Mark
Oh, there was no argument about it or anything, and yeah, that was just perfect for you. Yeah, and in his first week as well, just like you, for you as a parent, I must must have been just like, oh my. Oh my god, they get it. Yeah.

Charlotte
And for him, he knew that that department, if anything happened, he knew he would just walk there, walk in, and sit down, and they would. Take care of whatever. I mean, that was just brilliant. Yeah.

Mark
Yeah. I mean, um, we do get a lot of professionals listening to this podcast as well. um yourself included. So it is it is important to sort of to champion the like the m the vast majority of professors are great, but you will get some some wrong ends. And that's frustrating because, as I say, they wield an unnaturally large amount of power when you're early on in your journey. And I g like from your point of view as a professional, you must be like the the good professionals must be really infuriated by the ones that are just not really not playing the game, you know? That that just don't really know what they're doing. It must be s very frustrating.

Charlotte
Yeah, it's a massive challenge, it is.

Mark
I did also want to just kind of mention in terms of people who are super supportive, the experts, Tam. Tam is a teacher in a secondary school.

Charlotte
Yeah.

Mark
And almost sort of has a mission to scoop up those neurodivergent kids because they get it, right? They've seen it with our kids and they spot it in all the other kids 'cause you know you you become very adept at working out, even if they're not diagnosed, the ones that need those accommodations. And Tam is incredibly understanding and gives them space to themselves and allows them to get away with shit that not really, you know, in the rules to get away with, but lets things slide because again, with You know, we're very used to it in our house as well. So I think that they're sort of galvanized about that. And another thing that Tam does, which they told me recently is that they communicate to the parents of these kids, they'll phone back and basically just make sure that the parents know they've got their back. that there's someone at the school that sees them. And I think what the thing that Tam says is that not all teachers are going to understand or get your kid. And I can't help that, but I do. And there's a safe place with me. If they need to come and see me, then they can. And for parents to get a phone call from someone that's not negative

Charlotte
Yeah.

Mark
You know, is just like, all right, there's an ally there. And I'm sure that people have remembered Tam and's like, right, you're the person that I'm going to come to. You know, yeah. So there are, you know, hashtag not all experts. I think the people that I found the most helpful out of all of this, and not the professional experts, It's the other parents of neurodivergent kids. The experts in their own kids are also, ironically, the best people to be experts for your kids. Absolutely. Yeah, one hundred percent. It's that support and that camaraderie and that shared understanding is so important.

Charlotte
Massively so, massively.

Mark
Just building that network of people is um it's hugely important. So Let's give ourselves a pat on the back. Now, obviously, I feel like I'm in a good place at the moment in terms of With Otto and India being able to advocate for their needs in school. Jay's school is incredibly accommodating. He's in a specialist autistic school and They just get it, obviously. That's why he's there. And it's wonderful. And we have very clear and open communication with them. I was up till one in the morning preparing for his EHCP review on on Wednesday, so that's fun. But I know what I'm, you know, I know what I want from it and I'm going to go in there and I know that they get it. So at least I've not got that battle. But there are still times. where we go into something not knowing what we want to get out of it. And that's quite hard. So typically, we have always sort of known what we wanted to get out of a meeting Being clear on what the action that we need off the back of it is going to be. You know, I need you to refer us to CAMS or whatever it is, right? And that's much easier for professionals to go, oh, okay, there's an action. Sometimes you find yourself going in there and going, I don't know, I just don't know. What have you got for me? What can you do? And that happened very recently. And it's very strange going from a position where you are kind of advocating for your kids' needs very clearly and what you want and being very direct about it to then just Essentially, throwing yourself upon their mercy.

Charlotte
Yeah.

Mark
Is this a a thing that you've had?

Charlotte
Yeah, so we have it in kind of an ongoing way.

Mark
Okay.

Charlotte
Because Andrew doesn't have an EHCP and we're in this constant question of does he need it, do we do it, or is it still okay? And it's that difficult thing in that the meetings that we go to with the professionals are the school he's at at the minute, but he is due to move on from there So they understand him well and they are doing a good job of supporting him. So when you talk to them about it, we're all kind of in agreement. Well, now in this situation It's okay. He's okay. You've got it. We've got it. That's fine. But it's that open ended who do we ask to decide, do we need it to protect that Down the line.

Mark
Yes.

Charlotte
And if you were to sit down with someone different on that day, that sort of open-ended, do we need this or not is it's really tricky.

Mark
Yes, it is. And then sometimes you get down the line and and you kind of build a a rapport with someone And then they go, they leave.

Charlotte
Yeah.

Mark
And it's like, oh, dude, you want my person? Yeah, absolutely. You want my ride or die, man? And you, ah, that's the one. And you're left with the new person.

Charlotte
Yeah. Who doesn't know anything about you or your situation, however much they might know the theory and everything else, that rapport is just gone, isn't it?

Mark
Yeah, and then you've got to start from scratch. It's like, oh, do I Do I need to go through everything?

Charlotte
Okay, can you?

Mark
Because they're not going to read the notes, are they, dude?

Charlotte
No, there's so many of them.

Mark
Give me the headlines, guys. Okay. Yeah, so I I had this with with CAMHS recently. So, you know, Jay is doing okay, diagnosed autistic ADHD, but there is something else going on, and we're, you know, and there's anxiety there, there's something else going on, and he was prescribed medication in the summer and that's making a big difference, but he's still hugely reluctant to go into school despite the fact it's a specialist setting. So we got a referral for CAMHS psychiatry to go I don't know what it is. I don't know what it could be. This is a thing I'm not an expert in, right?

Charlotte
What can you do for us?

Mark
What have we got here? And it was just so underwhelming. It was one of those ones that you just come out and go. What was the fucking point? So I went, I took Jay in, and he was delightfully weird. I mean, it was hilarious. Some of the shit he came out with was really funny. And I told them all about the history, and they interviewed him, and I let him do a lot of the talking, and that was all good. And then you they had my heart started to sink when they were like, Well, we could put you on a parenting course. And it's like Are you shitting me? You know, you're just like, oh, really? That's what oh well, this is where we are. That's where we are. It's like, and I said the line and I'm not proud of it, but I was like. I have a podcast which is awful. It's like I do a lot of no I didn't just say that I I do an awful lot of thinking about this. Believe me, I've done a lot of research. I have a podcast and I talk to a lot of incredibly knowledgeable guests. So You know, the parenting course, we're past that. We're way past that. Maybe, yeah, maybe it is that, actually. Maybe I'm just a city parent. Um so that that my heart sank at that point. Basically, I heard her thinking out loud. And I'm not saying that she like, you know, she was only offering what she could. She was like proper high up as well. Like she knew her shit. And she was just thinking out loud of like, well, we could do this, and sort of looking at her colleague and going, and it's like Just shrugging in front of me. It's not a good sign.

Charlotte
It's not great.

Mark
And then they sort of said, Well, okay, we'll make some recommendations and we'll get the report out. I was like, Well, I'll get the report out by the end of the week. I was like, Great. Well, that's a quick turnaround.

Charlotte
Yeah.

Mark
Wicked. That's actionable because she was like, You've got your EHCP meeting soon, so you'll want the recommendations before that. I was like, Yes, I do. Great, okay, sweet, that's great. And I got the report through. Oh my God, it was I cannot tell you how underwhelming it was. They like stuff that they'd mentioned in the meeting that I was like, no, we don't we no, we already label our emotions in front of Them that's, you know, we already do that. They mention that. Oh, you might want to go to the local support group that we've been doing for years and we know inside out, we know most of the people there. Yeah, that's where it becomes really disheartening. When you go to the top and then they just go,

Charlotte
there isn't really anything else.

Mark
Yeah, so that's where we are with that. Yeah, that's where we are with that at the moment. And the report was like, well, here's the report. And you know, you've got any questions, get back to me, but I'm leaving by the end of the week.

Charlotte
Marvelous.

Mark
Oh, God. So it is literally just, you know. Just drop it on your doorstep, ring the bell and run off. Thanks, guys. It was essentially a written shrug. that report.

Charlotte
Yeah.

Mark
Great. Okay. So you know, back to square one on that one. I did want to just kind of have a section of this episode in defence of the experts, you know, we've touched on it a little bit, but I think it is important. This isn't a criticism of the professionals. I know that they're trying to help. No one would be in these roles if they weren't trying to help people, if they weren't desperate to support people and, you know, they didn't have kind hearts, right? Absolutely. Maybe we have unrealistic expectations of them. You know, if you think about what they're dealing with, they have no funding.

Charlotte
Yeah, absolutely. Right?

Mark
So they've got this tiny pot of money And they've got people knocking on their door and going, Can I have a bit of that money? And, you know, they're like, Well, you aren't like tipping over tables or you're masking. And they have to assess it on that point, right? So they have to allocate it the children most in need. So if they don't see your child struggling, they don't see the need, then it's an easier choice for them to make. That must be a nightmare. I'm so glad I'm not in that position of having to allocate this tiny budget to an overwhelmed service. Yeah, absolutely not an enviable position to be in. I mean, another of the problems, as you alluded to earlier, is that autism itself is part of the problem. Autism is so nuanced, it's so varied and multifaceted that It's not just one size fits sold, is it? It's not like a burst appendix. Okay, well, I know what that is, and I know how to fix it. We'll do it now. It's like there are every child. My three kids are all very different. I'm sure yours are the same diagnosis, completely different presentations. And I know them. Not your kids, obviously. Sorry, my kids. I know my kids. So if you're asking an expert to be able to help you and they don't know your kids. What chance have they got? Yeah. Like I don't and I don't know how you resolve that.

Charlotte
No. Because it is about that time, isn't it? It's that time spent with them and how How on earth can a professional spend enough time with every child they might be working with, talking to? Like Yeah, it's it's an impossible conundrum that. Yeah, come on, 10,000 hours, guys. And commit. Take some hours. Of course. Come on.

Mark
Yes, so autism in itself is part of the issue. And I don't know again, don't know what the answer is other than more funding. More funding, more people. That's the only thing that's going to resolve that. And I think when a lot of people sort of encounter these experts for the first time The starting point is to be suspicious, I find. The starting point is it's a no from me unless you can really make your way. It's like Simon Cowell. Right. Like I'm starting with a no. And then if you if you wow me with your evidence, then okay, I'll do a yes. And it's a genuine question I have. Are there a lot of people just making this shit up that means that that no is justified? At the outset.

Charlotte
This is what I always wonder. Because genuinely, having worked with hundreds of families and young people, there is not a single one that has ever asked for our involv you know, my involvement as a professional with an understanding of autism. There is not a single child that I could think of Where I've thought, no, this is absolutely the wrong thing. Really? Really, truly.

Mark
Yeah, it's so rare Why are the rules sort of geared towards those rare occasions? Like, it feels like that, doesn't it? It feels like every they're suspicious of you. At the outset.

Charlotte
Yeah. You're coming in here to get something.

Mark
What?

Charlotte
You've been sneaking, guys.

Mark
You've been really burned by this family that's making shit up, that everything else going forwards is treated with deep suspicion.

Charlotte
And do you think what you're giving out is so amazing that everyone's going to be queuing at the door to get it?

Mark
Like,

Charlotte
Why that's the default, I do not know. The default is no.

Mark
And I think this is probably where budget comes in or other other things come in. when you're going to that service at the outset, it feels like that they're suspicious of you. And that's a horrible thing. Because w when they say no to the accommodations that you're asking for or the support that you need, do you walk away thinking They think I'm making this shit up.

Charlotte
Yeah.

Mark
Like, they think I'm just like a terrible parent.

Charlotte
And the impact of that is really, really strong. Yeah. And I don't think that's necessarily recognised by everyone. It's it's bizarre. I remember Heidi saying that someone say to her that neurotypicals don't spend hours on end wondering if they're neurodivergent, right? And that really stuck with me. But I think that's the same with parents. Like parents of neurotypical kids don't sit around wondering and researching whether their child might be neuro different in any way. Like they just don't. They get on with their lives. And by the time most parents go to an expert and say, We're wondering about this, they've spent quite a lot of time already reading about it, looking up about it, finding out something. They haven't just plucked it from thin air and thought I'm bringing this up today.

Mark
Yes. Yeah, yeah, I'm sure there are very, very rare occasions where that is the case. But let's understand that that is very much the exception. And if someone comes to you looking for support, believe them. Yeah. From the outset. Like. Because it would make it so much easier, you know, not to get through the loopholes and the massive amount of admin and paperwork, but just on On your fucking soul.

Charlotte
Yeah, absolutely.

Mark
You know, to not be disbelieved at the start.

Charlotte
I don't know if you know Dean Beadle.

Mark
He's an autistic adult that does advocacy.

Charlotte
He was one of the first. Autistic adults that I got training from when I was doing my masters. And he says the biggest gift we can give to parents is just to believe them. And that always sticks with me. And whenever I work with parents, I will just take what they're telling me as red from the outset. You know, down the line you might find out that something was exaggerated or whatever, but actually Parents are coming to you for help.

Mark
They just need to be listened to and take time out of their day to come and get help they don't need. That's going to be Just believe it. But if there is anyone out there doing that, stop it.

Charlotte
Stop it.

Mark
Ruining it for the rest of us. Another issue and why it's so hard for experts to beat expert is obviously masking, which we've we've touched on, but which is so difficult. And that is a you know, only really recently been understood in particularly autistic girls. I'm not gonna gendering masking, but it's the reason why so many girls were undiagnosed for so long. Absolutely. And our kids are bloody excellent at it, it appears. Yeah. So of course they're going to slip under the radar because they're doing a fantastic job of not showing that they need support. And that's really tricky. And teachers are able to spot neurodivergency in the bouncy boys. You know, the ones that are jumping around on tables and throwing chairs and just, you know, fizzing around. It's like, well, that's obvious. But the quiet ones that kind of keep it in I think Eliza Fricker referred to it recently as the corridor kids.

Charlotte
Oh, yeah.

Mark
Which I really like that expression because it's you know, this idea that these kids are not causing a problem. They can't cope in the classroom, so they're just kind of shunted into the corridor to not cause a problem out there instead. And it's you know, they're the ones that are slipping through and don't seem to be being supported. The other difficulty is that you can know everything you want about autism until you meet someone who's incredibly high masking, or you meet someone with PDA, or you meet someone who's situationally mute. Everything is different. Like and my own journey with my own kids, which I will be covering in a future episode, has been like, oh, I oh, that's what autism is Oh no, hang on. This is what autism is as well. Oh, hang on. This is what autism is. And you you ha like I'm constantly updating my understanding of what it is, and the professionals, as you mentioned previously. they're not having the training to keep up to date with it because again, funding and just capacity.

Charlotte
Yeah.

Mark
Like f for teachers and I presume professionals such as yourself. Do you do a lot of continuous improvement? Do you do a lot of of courses?

Charlotte
Yeah, we are in a really lucky position to be able to do that. And I particularly will just invest in things myself because I just really value that update constantly. And there are any number now of Autistic Adults, particularly, who just give amazing insights into things. I know you've had Kieran Rose on, I've had some amazing training from him. But it is an investment. I it's not necessarily that work will pay for that, and not everyone's in the position to do that.

Mark
Yes, yes, so then you've got to do all the reading. I mean things are being talked about more, so there there is more awareness and I think there's more access to it. But particularly with teachers, I mean, this isn't all teachers. I know we've we focus a lot on teachers because they feature very heavily in a in a kids' lives at the age that we're sort of trying to get them diagnosed or trying to get that support because very often we're trying to get that support for them in school.

Charlotte
Absolutely.

Mark
But teachers don't have capacity. They're exhausted and they're overwhelmed by so much stuff that you know, there's no funding to send them on courses. They just have don't have the energy. Again, Tam is a teacher, so I see it first hand that Tam is does an an incredible amount of extra work. But That's it.

Charlotte
And often, like, the the good conferences and things are like a two-day conference. Well, if a school sends a member of staff on that, then they've got to cover them for that two days. Like, there's that double costing of everything, isn't there? It's not just as simple as let's get the training necessarily.

Mark
Yeah, so funding again, it's all about all about the funding. Now, I appreciate that sometimes Professionals that do push back initially, there is a reason. Like, they do have to check that you've done the basics. You know, it's like IT, isn't it? They always go like. Did you close down the application?

Charlotte
Yes.

Mark
Okay. Have you turned it off and on again? So they do, I think, they need to direct you to stuff that, like the parenting courses. And you know, the leaflets that you get. That's the amount of like, have you read this? Yes, I could probably write one by now. But thank you. They do need to kind of cover the basis because there will be people at various different stages of their journey. I can't think of many things that I was given as a resource that helped. Because I would have already done proactively, I think, done that research online, listened to an audiobook or whatever it was, or a podcast. But there are some people that that is helpful for, I think. So maybe I'm getting unnecessarily irritated.

Charlotte
It's not all rubbish.

Mark
Okay, let's look at the positives now because I think it is worth saying, as we've said it a number of times, there are some phenomenal experts out there. There are teachers and there are GPs and there are occupational therapists, like that big list that I went through at the start. All of these people are there to help us. Like I've had so many interactions with people and a lot of them have been really helpful. A lot of them haven't been able to help. that's a different thing, isn't it? Sometimes that's just the thing. But but there are they are all all willing to help if they can. And I think that's worth mentioning. Sometimes it's the luck of the draw with who you get, but there will be shining beacons of hope in amongst it all who are going to champion you and give you strategies you haven't thought of and generally help you feel understood. And I think that the more that neurodivergency is discussed and understood, I think the more that people have access to stuff online. as well as in person with other parents of Neurodivergent Kids. There's a huge community of online support available. So there are experts everywhere. Such as yourself, Charlotte. Doing great stuff. You go into schools and sort of do training, don't you?

Charlotte
Yeah, so I work into any school that refers and. what our focus specifically is on upskilling the staff that are there to work with the children that they have. So we've kind of moved away from just working with the individual children because then when you walk back out the door, they're back at the stage they were to start with. So we are all about trying to give that expertise to the staff that are there day in, day out, so that they've got the knowledge and skills to carry that out, you know, day in, day out. And so that, that can transfer through to other children they come across. You know, not necessarily exactly the same strategies are going to work, but if you've got that knowledge, you can start to try things for yourself.

Mark
Yeah. And is that sort of an ongoing thing that you go in like an ongoing program of work weekly?

Charlotte
Or is it a two day intent two day boot camp? No, it tends I think that would be pretty intense. No, it tends to go for sort of maybe a half-term cycle, and then we'll review and see where we're at. And if that needs to continue, it can continue, or if staff feel able to. They might run with it themselves for a while, but then they can always come back to us and say, well, we've tried these, it's not working anymore. Can you come back? So yes, it's kind of fairly flexible, and it really depends on the staff and the individual that you're working with.

Mark
Great. It's so good to know that that is out there because I don't know what goes on. I don't know, you know, in in the in schools and stuff, I just you know, I don't know the training they get because you don't you don't ask the right, but it's it's out there. The information's out there if they can if people can access it. The other positive that I really wanted to focus on is when you realize that you're the expert in your own child, that is powerful. It's empowering to be able to sort of go into those meetings and know that what you're saying has value and has truth and evidence and not feeling like an imposter and not feeling like you can't speak up because they know more than you.

Charlotte
Yeah.

Mark
It's a wonderful thing.

Charlotte
It is a wonderful thing, and something that I've noticed as have got older. is that actually they are slowly starting to realize that we're kind of quite helpful and we are actually pretty knowledgeable on them. Just like in little nuggets, you'll suddenly they'll realize that actually what you've suggested or what you did in their moment of crisis was actually the right thing. And that's really like, that's really powerful to actually do that. It really is. Yeah, from them themselves. Actually, yeah, that that is what helps me kind of thing.

Mark
But in doing that as well, in being the expert in them, you're modelling to them how they can be the expert in themselves.

Charlotte
Yeah.

Mark
So they can then advocate for themselves in those situations and go, ah, now what I need here is for you to not be near me and for me to go and listen to Ed Sheeran on repeat. for not in the dark yeah that's the india's thing um so yeah i think that's the one thing that I think neuroshamblers should take from this is to understand that you know more than anyone else about your kids. You might not know it all because, you know, no one does.

Charlotte
Yeah, like who can?

Mark
You know, it's as we said, it's completely multifaceted. But you do know the most about your child and never feel that you should not be vocal in advocating for what they need. Yeah, absolutely.

SECTION INTRO
Neurodiversity Champions

Mark
Okay, so on to neurodiversity champions. Now this is the section where we talk about any people or organizations that have been exceptional in championing neurodiversity. Have you got anyone for us?

Charlotte
I have. So the first one I wanted to mention is an author that I've come across called Neelam Khan.

Mark
Okay.

Charlotte
And she is parent to Neurodivergent Children and today actually is the publication day of her children's p picture book It's called Bilal's Bad Day and what makes it amazing and the reason that I am talking about it in every school I go into is it's about her whole aim of it. was to reflect her family in the book. And it's a vis what she says is it's a visibly Muslim brown family presented in a picture book all about neurodivergence in the children. So it's quite an unusual book out there on the market, but I think is really important in that wider representation of things. So I am talking about it in so many schools because I just think it should be in classrooms everywhere. And it looks amazing. I've got mine ordered. I haven't actually seen it in the flesh, but I've seen videos of it and things.

Mark
And yeah, it just looks brilliant. Great. Okay. Well, if you can give me a link to that, I'll put it in the show notes.

Charlotte
Absolutely.

Mark
Awesome.

Charlotte
And then I wanted to mention Liz Evans, who goes under the untypical OT. And she's a dyslexic occupational therapist and a parent of ND children, one of whom's on an EOTAS package. So she's had to kind of carve out a more flexible way of working. So she's working online supporting parents particularly looking at supporting with parental burnout and with unpicking behaviour in children. And yeah, she's got some brilliant online courses and things, and yeah, her stuff is brilliant. Parental burnout. Yeah.

Mark
That's interesting. But yes, I'll definitely put a link to that. And Well, I'll do one better. I'll get her on the podcast then we can actually find out more about it.

Charlotte
I think that would be great. Um and the other thing was Another podcast that I absolutely love called Neurotypicals Don't Juggle Chainsaws. Have you heard of it?

Mark
I have not. I mean, I love the title.

Charlotte
Yeah, it's a strong. It's a strong, it's a strong title. So it's two presenters. Nick King and Kate Fox. Kate Fox is a poet and an author, and she's often on Radio Four, and they're both neurodivergent, and they just talk about all aspects of neurodivergency. It's just a really great listen. Yeah, very entertaining. Half hour, forty minutes each week.

Mark
Yeah. Okay, well I'll definitely check that out. Again, I'll put all of this in the show notes. Awesome.

SECTION INTRO
Tiny epic wins.

Mark
Tiny epic wins now. These are the moments that for neurotypical families would be no big deal, but for us they are major victories. Do you have any tiny epic wins for us, Charlotte?

Charlotte
I do. I mean, I class it as an absolutely massive win.

Mark
Yeah, I mean, they usually are.

Charlotte
But yeah, go for it.

Mark
Go for it.

Charlotte
So both my husband and I work a lot of the time at home. And I think because of that when the boys get in from school, they kind of just assume that everything gets done because we're home. Even though we're working, we're home. So of course it's going to get done. So we've kind of slowly built in that they have a couple of their own little jobs that we expect them to do. Things like emptying the dishwasher or, you know, there's a few little things. And then, probably about three months ago, I absolutely lost my shit and said that it was really time that instead of being told to do things, I just wanted them to notice if something needed doing. If there was, I don't know, a T shirt on the stairs, could you notice it and take it with you? And just take it up the stairs with you?

Mark
I mean, they are lofty lofty ambitions.

Charlotte
I mean very lofty ambitions and they all laughed in my face pretty much and like that was the end of that and then two weeks ago my husband and I were both working away and suddenly I heard the Hoover.

Mark
Whoa. And someone's broken into our house. What's going on here?

Charlotte
So we finished work and I said to him Something's gone disastrously wrong. Like, the only reason the Hoover out is because something's been like, exactly. So we're looking around the house, like, what's gone on? No, no. Andrew had taken it upon himself. He'd gone in his bedroom and he'd seen it needed hoovering. There was fluff everywhere, was his comment. Because he'd got a new blanket for his birthday, which was shedding fluff everywhere. There was fluff everywhere on my carpet, so I noticed it and I just thought I'd hoover it.

Mark
Oh my god, that is incredible!

Charlotte
That was incredible. Not only that, he knew where the Hoover was and he put it back on charge when he'd finished.

Mark
That is staggering.

Charlotte
Andrew, like huge, huge. I mean, it'll never happen again, but I'm taking it.

Mark
Ah, but he's got it in him.

Charlotte
Now you know it's it's it's it's it's it's noticed it and he did something about it. Amazing. That is huge.

Mark
My tiny epic win recently was that Jay gave Otto a compliment, which Literally never happens. But Otto had spent quite a lot of time doing a picture. And Jay walked in and he went, Who did this? And Otto went, Me. And he went, Otto, this is wonderful. Right, and I was like, shitting hell. I just had this moment of disbelief, and he went, finally, something you're not a failure at. I'm going to focus on the compliment bit. That's the bit that I'm going to focus on. And Otto went, wow, that's a compliment and a discompliment. I just kind of watched all this play out and it's like, no, I'm going to focus on the good bit. Giving Otto in particular a compliment was massive. I mean, there's been nothing similar since, but I'll take it in that moment.

SECTION INTRO
What the flip?

Mark
Okay, what the flip moments now? These are specifically moments where our children will say or do something that will completely confound us. And I typically have quite a lot of these. So I don't know if you've got any, Charlotte.

Charlotte
I haven't, despite racking my brains. We normally have a few, but no, nothing's come.

Mark
Well You're in luck because in a recent meeting I had with CAMHS, Jay was just full of them. So they were talking to him to try and kind of assess, you know, where he was. mentally. And the the woman was trying to understand how he felt about being at home. And she went, What is the best thing about home? He thought about it for a little bit and he went, We've got three toilets. So we don't have to interact with each other much. Like, really. Of all the things, of all the things in our house, the number of toilets is the best thing, the most positive you could get. Then she asked him for further positives about life. She's bearing in mind she's trying to assess his mental state at this point. He went, Well I haven't been kidnapped in a white van yet. Note the yet as well. He's like, you know, he's not ruling it out. It's probably on the cards at some point. But as of now, I've not been kidnapped in a white van. There's another one I have, just the final one. Tam went into school for parents' evening for Otto, and they asked if the teacher had ever met Jay. Right, 'cause Jay's left the school now and it's always interesting to know if they've ever met Jay. And sh and she sighed and went, Yes, but only once. He told me off for being too charismatic.

Charlotte
Awesome.

Mark
Who the fuck does he think he is? Walking around admonishing teachers for their charisma?

Charlotte
How dare you be so charismatic?

Mark
But he's I mean, like, she's met him once, but he's left that indelible impression. That is very much in the world. Squashing charisma wherever he goes.

SECTION INTRO
Poetry Corner.

Mark
Okay, it's Poetry Corner now, and uh it doesn't happen very often on Neuroshambles, but occasionally I'll Whack out a poem. Why not? Um, so cast your minds back to episode 25. If you're a regular follower of Neuroshambles, there was an episode that I recorded with Lisa Lloyd where we talked about judgment. From outsiders, and we set each other a challenge to write a poem about being judged by other people. So I did do that. It took me a long time because it was Christmas in the middle of it, and then I forgot to actually. Follow it up on here. So, this is the poem that I recorded in response to the challenge that I set ourselves. As a parent of autistics, there's a never-ending fight against authorities to gain support, which is our children's right. But through grit and graft and force of will we win the recognition That the cause of our kids' struggles is a neurological condition. However, sadly, in some people's eyes, they're not viewed as disabled, because every day some dick will say, Autism's just a label To tell the truth, the first few times that cut me to the bone. I hoped that folk would empathize and we'd feel less alone. Don't get me wrong, most show support and wouldn't dare condemn. They haven't fought our fight, and know that we know more than them. But there's always one or two whose confidence outweighs their smarts, And instead of speaking from their brain, it's from their stone cold hearts They don't waste time on researching opinions they proclaim They have no regard for experts, so the parents get the blame. You're making up your child's condition just as an excuse It's clear their wayward ways is because you've failed to introduce some punishment or consequences for their bad behaviour. If you take my sage advice, strong discipline will be your saviour. By saying they're autistic or they have ADHD, You're just justifying naughtiness. It's plain for all to see. These conditions simply weren't around when I was being raised, So I think you've made it up And it's become the latest craze. It's at this point that I take a breath. A pretty useful tool that I've learned through gentle parenting to help me keep my cool. And the moment I've regained some calm, I look them in the eye, And I summon up the strength to offer up a firm reply These labels that you sneer at, so dismissive and so mean, aren't just handed out with corn flakes or dispensed from a machine The hoops we have to jump through just to get them diagnosed is a monumental battle when at each turn we're opposed. It's a long and painful process. They're observed at every turn. We have to gather so much evidence, it'd make your stomach churn. They asked for written validation from their teachers and GP. Child psychologists and occupational therapists must agree. And even when we've dotted all the I's and crossed the T's, there's an independent panel of more experts to appease. Finally, when all the proof has been evaluated, we've received the diagnosis which for years and years we've waited. It's the final culmination of a fraught and lone crusade where we've overcome each hurdle and smashed through each barricade. We're exhausted and emotional, our patience paper thin, so forgive us if we don't appreciate you chipping in I'm sure you think you know what's what, you've got it figured out, But I'm here to add perspective to the nonsense that you spout And when you say that labelling kids is parents being lazy, Maybe now you'll see just why that drives us so completely crazy And I hope you now appreciate these labels don't come easily, and maybe you'll think twice before dismissing them so breezily You should never judge until you've walked a mile in someone's shoes, and I wouldn't wish my journey on anyone no, not even you. Okay, that is it for this episode of Neuroshambles. Firstly, Charlotte, thank you so much for coming on and talking to me about the topic of the week and for being an expert yourself as well. No problem.

Charlotte
It's been great. Thanks for having me.

Mark
Good, good, good. Do you want to tell us a little bit about your your the company that delivers the expertise?

Charlotte
Yes, the company is called Badger Education. Yeah, and can be found on all the normal socials. Where do you operate? Um, so I am based in the north east of England, and we are branching out into some online training and things too, so that might be an option for people further away.

Mark
And if you've got any kind of resources or anything like that, I'm happy to put them in the show notes if you want.

Charlotte
No worries.

Mark
The other thing to say is thank you so much for listening to Neuroshambles and also for the people writing in or giving me lovely comments on the socials. It means a massive amount and it does keep me keep me going sometimes in the darker times. So keep that up and keep spreading the word. If you're looking for us on the socials, we are on Facebook and we're on Threads and Instagram. and TikTok as well. So come and find us. If you've got anything that you want to email in about, including a topic of the week, you never know, you might be invited to come on. Does happen, doesn't it, Charlotte?

Charlotte
It certainly does.

Mark
Then the email address is hello at neuroshambles. com. And all that remains for me to say now is have a nice life.