The Bumpy Road to Diagnosis | Tam

EPISODE TRANSCRIPT

Mark

Hello, and welcome to episode 33 of Neuroshambles. Welcome back once more, Neuroshamblers, and thank you yet again for lending me your ears for another podcast. Thanks also for your very kind comments on the previous episode, which is the one on masking with Pete Warmby, which appears to have resonated with quite a lot of you. One of the comments I received was from Robin, who said, You've just explained why I would devise strategies to avoid school. I was gifted and loved learning and found it effortless, and I didn't want to be at school. I wanted to be safe at home. So I'm pleased that it might have offered you some perspective in hindsight. Thanks for your message and thanks to everyone else who emailed or contacted us on the socials. Now this episode is one that I've been anticipating for a while now and very weirdly it coincided with the day that we heard back From India's autism diagnosis. So there's a strange bit of history on the podcasts here. Anyway, I'm going to crack on with it. Let's stop the preamble and start with the actual amble. Enjoy.

SECTION INTRO

Meet the guest.

Mark

So, for this week's episode, I have got a very special guest. It's someone that regular listeners will already know a lot about, presumably, having heard me describe many of their exploits throughout the turbulent journey of raising our neurodivergent kids together. As well as being a secondary school teacher, EOTAS tutor, Lego enthusiast and late diagnosed neurodivergent, they are also my former partner, current co-parent and longtime friend. I am delighted to be able to welcome onto Neuroshambles for the very first time it's Tam. How are you doing?

Tam

I'm good, thank you.

Mark

This is a bit weird, isn't it?

Tam

It is a bit weird, yeah.

Mark

Okay, fine. Um so when people come onto Neuroshambles for the first time, typically, as you know, I ask them to describe their setup. Now, people already know our setup. Quite well, I would imagine. But I'm quite interested to hear it from your perspective. So describe our kids for us.

Tam

Well, we co-parent our three children. We have Jay and Otto, the two eldest boys, who are jointly diagnosed autism and ADHD. And then we also have our youngest daughter, India, who was on the pathway for an autism assessment, and we found that out. Today?

Mark

Yes, but no no spoilers.

Tam

No spoilers.

Mark

We will be getting to that diagnosis later on. Thank you for describing our setup. We'll crack on with it.

SECTION INTRO

What's the topic of the week?

Mark

So, this week's topic of the week is one that I've been meaning to do for a long time now because it's something that so many of our listeners have had to navigate themselves and will no doubt have very different experiences of. And that is the nightmare process of getting our neuroexceptional children officially diagnosed. Although I know that, Everyone's experience will be unique when it comes to the diagnosis journey of their kids. I'm hoping it might be interesting for Tam and I to share the story of our own three kids' diagnoses because they've all taken completely different routes to get there. So for any listeners who are the proud owners of suspected neurodivergence, but haven't yet navigated the rocky pathway of diagnosis yourselves, you might find some useful nuggets of information in this episode. For everyone else Well, it's always fun to hear other people's war stories, isn't it? So that's what you're going to get from this one. As a heads up, this episode is only going to focus on the diagnosis journey itself. I was initially going to discuss everything that leads up to applying for the diagnosis, but I realised that there was going to be way too much for us to talk about. So I'm going to split that up into a separate episode, which we'll do at another time. One final disclaimer before we wade into it. In case it needs pointing out, we're only qualified to talk about our own experience of getting kids diagnosed. everyone's journey is going to be completely different as there are so many different factors at play depending on how accommodating your local authority is or how your kids present. or how supportive your child's school is, not to mention the completely unforeseen curveball of COVID, which some of us had to navigate just to spice things up. So the the whole process of applying for a diagnosis is long and fraught with stress and uncertainty and a shitload of admin. And obviously our kids have gone on Many of the different routes towards diagnosis. So we've had Jay, who for autism went strictly NHS, but for ADHD went private, which we'll get on to. Otto went strictly private for all of it. India went NHS and then right to choose, which is private but under the NHS, and ADHD, anyone's guess. What are we going to do there? So I think it's quite an interesting selection of journeys for us to talk about. Firstly, I wanted to talk about the journey of when you decide whether to get your kids diagnosed, because that was a discussion we had, right?

Tam

I also think it's changed over the years, like initially with Jay. Our eldest, it was wanting to know what was going on so we could support him. So we saw that he was struggling and wanted answers more for ourselves, I think, as parents. And I think as we've gone on this journey, which I was looking at, is over six years we've been following various pathways. Now it's more for school to be able to support them. I feel it's less about us understanding our children. I think we understand them. We don't need the diagnoses in the same way?

Mark

Yes, it wasn't a motivating factor with Jay to get accommodation from school. It was more like, I want to know what what's going on so that we can work with him on it.

Tam

Yeah.

Mark

I mean, I think part of deciding whether you go for a diagnosis is this idea of whether you label your child. There is the stigma, or there was, I think, before we knew what. we were talking about. There is the stigma of not wanting your child to be labelled. I can't remember us going through that and seriously considering not doing it because we didn't want anyone to judge our children.

Tam

I've never really cared about things like that. And I think with Jay, definitely, it was about understanding him. So just finding out what was going on. And I think we've used the word diagnosis. I don't think we used the word diagnosis with him. What do we use? What's the thing that he's the season we need to work out what's going on? I don't know, whatever the path we didn't know the pathways then. And I think with the others it's become more of like, do they need diagnosis? What could be going on? So I think the language has changed over the time.

Mark

Yeah, the language has just become more precise because we know what we're doing now and we we know the terminology and we know the different Routes along that rocky road. But yeah, it wasn't. I know that some people do have a stigma and do sort of hold off on getting their kids diagnosed because they don't want them to be. othered, maybe, and labelled, which is not anything that I kind of think was a consideration for us.

Tam

There was an argument back in the day that Jay was falling under the naughty boy syndrome.

Mark

We don't want that to be his label.

Tam

That was his label.

Mark

Yes, that was his label. That is true. And I if anything, I think that might have been a driver towards diagnosis in that sense. I I know from my point of view, when you hear people who you kind of consider close friends describing him as naughty and it's like, there's something else going on there. You know, it's I get why you perceive it as that, but we already suspect something different going on. So, getting the diagnosis was part of that. I think it's important to say at the outset with our kids that 100% of the journey of getting them diagnosed has been initiated by us. That's not to say we've forced it through, but we've been the ones that have gone, oh, excuse me, we think something might be going on here every single time. Now I understand that some people have different routes where the school might raise concerns with the parents. I think probably the vast majority of occasions is the parents raising the issue with the school. And I think it usually is the school, isn't it? The first point of contact.

Tam

Yeah.

Mark

Given their ages and the fact that the sc they're sort of seen amongst their peers and schools know what they're looking for in neurodivergent kids in theory. So yes, you do need to get them on board. I guess my point is if you're listening to this and you have a suspected neurodivergent child and you're on the fence about whether to say anything to the school Just do it because they're not going to instigate it. So be the ones to at least raise that and kick it off. Because you're not going to get anywhere without the school support if they're in school, obviously, but you need other.

Tam

You need to show behavior in two settings. To validate any diagnosis. So, without school, you can struggle for the second setting sometimes.

Mark

Yeah. Right, let's start off the journey of Jay, because that was the biggest one. Your first time is always the most significant. because you know less about it and you've got a lot more battles to fight. So we started Jay's diagnosis journey when?

Tam

At the beginning of year one. We approached the school at the beginning of year one. So he was five, I think.

Mark

Yeah, that's right. And the reason that we approached the school was he'd had quite a bad summer, I think it's fair to say. And we'd already had those sort of whispered conversations that happens between parents who suspect their child is neurodifferent but don't really want to raise that with anyone else. So we'd had all of those conversations and we'd done the online assessment.

Tam

And I think what what was key is he was starting to struggle. Like we were seeing him struggle. What so what we had labelled maybe our confident little boy, a confident, quirky little boy over that summer was showing genuine struggles and socializing, interacting. Like he was not the boy we knew.

Mark

Yes. And I think that's even at school.

Tam

Yeah. And I think that's really important with diagnosed these journeys. It's really about people who are struggling. That's why these pathways exist, as support people who aren't coping anymore.

Mark

Yeah, absolutely. And I guess, you know, there was just the incident that really sticks in my mind, which is the one that made me want to go like, we've got to go to school and tell them This is because if he's like this in a low-stakes environment, what the hell is he like in a school? Was when we were on holiday with some friends of ours and they had a boy of the same age. So Jay was introduced to this boy and his response was to get on his hands and knees and run around making animal noises and pretending to be a Pokemon. And I was like, that's just that's just not right, is it? That's you know, he's really struggling with this social interaction thing, and we need to try and get some support for him, I think, and or at least see if it's a thing that other people have noticed. So you're right, we raised it to the school at the start of year one.

Tam

We went direct to the class teacher at that point.

Mark

And how did that conversation go?

Tam

I think they just fobbed me off and said that he was fine. And I was a bit more insistent that I wanted them to sort of look at him a bit more before they had that judgment. And I think I did get an appointment with the SENCO.

Mark

Right.

Tam

Who's the special you know, specialist adult in a school setting. But but the problem when you first meet a Senko is they don't know your child because they're not teaching your child. So then you go and see the SENCO, which is quite often hard to get a meeting and then you raise your concerns and then they go back to the class teacher. So already you've got a little convoluted loop.

Mark

Yes.

Tam

But I did but that wasn't easy. Those meets to get that meeting from memory wasn't easy. I had to kind of chase up quite a few times. Not for the first time in the journey.

Mark

Yeah.

Tam

And I think at the time we we it was ADHD is what we thought. Like we didn't know anything, right? So we thought it ADHD was our mooted suggestion.

Mark

And that did present very vividly when he was that age as well.

Tam

But retrospectively, he was quite young. Like five is quite young to diagnose ADHD in in where we live it does they don't diagnose at five really. But anyway, either way the outshot of that was

Mark

No.

Tam

Yeah, they just went, nah, it's fine.

Mark

Yeah, fine. So, I mean, and that and at that point, that was quite a blow, I think, because we were sort of like, we want someone else to take this seriously, because you start We were already comparing him to his peers and like seeing that there is a difference there. And you're sort of hoping that the school will validate those feelings and go, Yeah, there is. Let's look into it. So to be sort of rejected at that point, I took quite badly, I think, in that I thought, well, what is going on? I was hoping for someone to help provide the answers. Do you remember how you felt at that point? Given that you have Alexathymute, I realize that is an unfair question.

Tam

I felt frustrated, but also I didn't really know. I didn't really know. So actually that geo, at that point, I was trusting The adults in charge of my child.

Mark

You do, don't you?

Tam

Yeah, that that is true.

Mark

Because they say he's gone now, but because we don't see him in that environment, right? We don't see him in school. So when you ask how he's doing at school. Assuming that he's going to be running around like a Pokemon, or just sort of struggling socially, as we'd seen previously. So being told that he's fine, you just assume that they they see loads of kids, they're probably, you know, they probably know what they're doing, and you sort of leave it. But all the time He's still struggling socially, you know, outside of school and in school, but we don't see that, obviously. So we carried on for a good few months. But what we were doing, interestingly at at this stage, is we was we started to log his behavior. We started to make notes about things that seemed a bit unusual. And I think that started pretty early on in the journey. You know, in hindsight, has been hugely important in the diagnosis journey because you forget of all the little kind of interactions, these little touch points with neurodivergency, these little presentations where they're quite obviously neurodivergent in different situations and it's only when you read them back you go oh my god there's been loads of little incidents that i completely forgot about and So logging was really important and we did that quite a lot, didn't we? I think that was your suggestion.

Tam

I think I read it somewhere.

Mark

Yeah, so that was just as easy. Just something as easy as starting a Google Doc that we both had access to, and then every time something happened, very often one of us would say to the other one, Oh, this happened today and it was a bit unusual, and then the other one would just go, Log it. And then you'd have to go and put it in the log.

Tam

And it's you know, it it's it's time consuming and it's it's time consuming and it's and it's quite a hard read because you're not logging Positive things, you ought you looking. un unusual at best. And when you go back over it, actually it's quite just when you see frequency of things. I found that quite hard going back over them actually.

Mark

Yeah, and it's hard at the time as well, isn't it? It's like you're grassing him up. you know, like you're telling tales on him or you're criticising him and it's not, you're just trying to present him as you know, present his difficulties. And that yeah, that is tough. You're right. It would have been good to have a log where it's like, hey, he did something really amazing today. And we'll pull that in a separate one. And we don't need that for the diagnosis, but let's just look at the times where he You know, we had loads of fun in the woods or something like that. So after several months in the spring term of that year, of year one They called you in for a meeting, is that right?

Tam

Yep. And they didn't tell me what the meeting was about. They just asked me to come in for a meeting. Did you suspect that it was that? I suspected actually they might have said we'd now noticed some things.

Mark

Okay. 'Cause he wasn't he wasn't changing at home, was he? He was still, you know, he was still presenting neurodivergently at home. So you went into a meeting that was with the class teacher.

Tam

Yeah.

Mark

How did that go? 'Cause I know the aftermath and I remember the aftermath, but I wasn't there.

Tam

Do you know what? Out of everything that's happened, that meeting was one of the hardest ones. She said, I'm really sorry. And I think the Senko was there, actually. She's like, I'm really sorry. There is something we want to explore further or whatever. But she apologised to me. and I think said we're going to do a referral to our local it's a child development service is where the referrals go. But then she said, oh, we had a student teacher And I think the student teacher in their classroom got given Jay as a case study to watch. And I suspect now, looking back, like they needed someone to watch his behaviours and she needed a case study to kind of Dovetailed. But yeah, I got presented with her notes and it showed so many horrible patterns of behaviour, like headbanging. On walls, like... It was a it was a catalogue of things he was doing.

Mark

It wasn't it wasn't just a few notes, it was a fucking folder full of their observations of the quite obviously neurodivergent things that Jay was doing.

Tam

That's I don't mind that's it was the amount of distress some of those ones represent those behaviours and then the amount of time that sh this person had been logging them and we found out all in one go.

Mark

Yeah, yeah, that that's hard.

Tam

It was a lot to take in in one meeting and it was there was a lot of distressed behaviours in there and I d and That yeah, I needed warning that I was going to see that in advance.

Mark

Yeah, because you brought that home as well. And obviously, I remember the conversation where you sort of said this is what they said, and it was obviously Really upsetting. And, like you say, not the fact that they suspected neurodivergency that was upsetting. It was the folder that was seeing it because it's all stuff that you don't see. And you send him off to school every day. And you hope it's all going to be fine. And you don't hear anything about sweet, made it through another day. And you don't have any insight really into what's going on when he's in the school. So to then have, yeah, like you say, this catalogue of things where he's distressed or is experiencing, you know, he's obviously overwhelmed. And it it wasn't all some of it was quite funny. I mean, it was like hot walling down the corridors, but it but yeah, but it was also opening doors with his head was a well not a particular and also when he makes his way to assembly, he doesn't walk with the other children, he climbs Across the chairs that are lining the corridor. And it's like that is obviously neurodivergent, but it does build a sort of, you know, another image of him in that environment.

Tam

But again, also it was just it was a list of things. It wasn't how they're supporting him. So it was just a list of ways he was struggling, but not any techniques they were using to stop him. It was hard.

Mark

Yeah. So the point that they left the meeting, they basically said they were going to refer.

Tam

They do a referral for child development in Brighton and then they fill up loads of information and tick. There's some like tick boxes not for diagnoses of just behaviors and then it gets funnelled like triage to the right people.

Mark

And obviously you need the school's evidence for this. So they put all that together and they sent that out. We did the parent bit. So Not for the last time, the fucking forms, the amount of forms. And that was probably quite a gentle introduction, I think. You're probably only talking about 15 pages for that one. So you fill out your forms, use them after school sends them off, and then you and that's where the logs came quite useful. because we could sort of pick out little examples of his behaviors and include that in the application.

Tam

And basically at that point, you're trying to meet a threshold to get to the next stage. So that kind of that first bit of paperwork is Do they meet the threshold at home and school?

Mark

That really woolly term of the threshold. What is the threshold? Is it scored on points? What is it? Is it just a feel? So. We had the challenge of getting the paperwork signed off by the end of year one, didn't we? And if they say we, again, you were very much driving this. Do you have to keep chasing up the Sen code?

Tam

I had to chase up every step of out of everything we discussed tonight, every pathway, every document, I've had to chase every single one up and check they've been filled out, submitted, sent, received. Put in a list, read it's going back to the admin, but every step of the way, and that is like my tip to anyone is check the school have filled out the form, check they've sent the form, check the form has arrived where it's meant to arrive, check it's in, you know, it's just You have to chase everything.

Mark

Which is fucking exhausting.

Tam

It's tiresome it's frustrating, but it's the only way to. to get things done, I think.

Mark

Because again, they've got a lot on their plate. So unless you're sort of in their face. And just being polite about it.

Tam

I was I was I tried to yeah, I was yeah.

Mark

So The school eventually submitted the evidence by the end of the summer term. And, you know, I think to a degree you're at the mercy of the CENCO's competence there. We got a good one, which was definitely helpful, obviously, you know, apart from the delay at the start. Our SENCO was supportive. You know, you hear so many stories of other people who have Senkos that just don't get it and don't support the application. you're fighting the SENCO at that stage. You know, you're just like you've got all the other battles to come later on and you haven't even got past the first level one boss, you know, that they're already putting up barriers in your way. So we're fortunate that we got the support of the Senco and that all went in. and we got notified of Jay's Stage One assessment, which was, I believe, just before COVID hit. Right?

Tam

Yeah.

Mark

So we were super lucky to get through. I mean, obviously, we went through Covid, so no one's super lucky there. But But but we were lucky to get the stage one assessment in before COVID hit because my understanding was they stopped all of that. And so all of these people who are waiting to get their children assessed are then on indefinite hold while the world was in absolute turmoil. So fortunately, we got through that and that assessment We were both there.

Tam

Yeah, we were both there, and Jay was there too.

Mark

Obviously, because they needed to assess him.

Tam

No, you say that. It wasn't about Jay, that assessment. That assessment was.

Mark

Well, why was he there then? Why would he take him?

Tam

He had to be there, but it was a developmental history that required zero input from him. So that hour and a half long meeting, you had to spend Wrestling him at a table and trying to make him colour from memory while I try to remember developmental history.

Mark

He didn't want to colour. He wanted to climb and like rumble, basically. which so but they were still assessing him. I know it wasn't about that, but they looked at him and they were definitely aware that something was going on. So yeah, I do remember from that it was just trying to get him Just so that you could have a conversation without this absolute chaos in the background and trying to engage him and stuff. And he wasn't really on board with me entertaining him. At one point, I think that he started rolling around on our lap We were sat down next to each other. He's rolling around on our lap. And the and the person is saying I think I I don't think she was wearing glasses, but I imagine her wearing glasses and then looking looking over her glasses at us on on the floor or whatever. But, um He made an impression, on her, I think it's fair to say. So at the end of that conversation, she said, Well, I'm going to need to refer it to the panel. And you're looking only you're looking for some kind of uh signs. You know, can you give us a clue? You know, because we know that the next pick's going to take ages, but she wasn't giving anything away. She said I need to refer it to a panel and we'll discuss it alongside lots of other children and we'll let you know. And that was it then. You're just out of the door. And it's like, well, I We don't know. Who are this mysterious shadowy panel? What do they... when will we hear from them? And we didn't even know when it was going to happen, did we?

Tam

No, so I kept ringing up to find out when panel were meeting.

Mark

Yeah, um it's a mysterious process. I imagine it's very much like the traitors where they sort of meet in a bell tower with hoods on and then they all go. What do we think about Jay? Definitely worth another look. Basically, that's it. That's what they're assessing. It's like, yep, we'll have a closer look. So, anyway, the panel meet, and then they tell us. Yay or nay. How did they communicate that? Was it white smoke coming out of a chimney?

Tam

I mean, you get a random letter. Doesn't say congratulations. we get a letter. It says he's been referred to stage two. And at this point, we didn't even know I didn't know what stage two meant really. I didn't really know the process. And it said it would be an eight month wait for that appointment.

Mark

Right, okay.

Tam

And we got an appointment about 14 months later.

Mark

Which I realize some people listening are going to think that sounds like ages. They're the ones that haven't been on the journey yet. And then there are other people who are saying, God, that was quick. It's because it's so varied depending on what your experience is. Are and there's so many different factors to it. But 14 months, I'll be honest, felt like a very long time. We also had COVID in in this as well, so that did l delay things a bit. I mean, it didn't delay the stage one assessment, but it certainly delayed because COVID was in and out of lockdown for those years, wasn't it?

Tam

Yeah. And then also, if you don't know if you remember, Jay, it was on A special secret cancellation well, not secret was on a cancellation list.

Mark

Yeah, how did you find out about that? This is a little this is a top tip from one of the experts.

Tam

Someone told me locally that there was a cancellation list. for Stage two assessments, but you have to ring up.

Mark

Just define the cancellation list.

Tam

Well, you have to ring up and say, my child's waiting for a stage two assessment. Can they be put on the cancellation list too? And the lovely lady at reception says, Yes, okay, I'll put them on that one too.

Mark

Why do you have to fucking ask for that? Why is that not just a thing? Like, you're having to ask for things that you aren't even aware exist. So. If anyone's listening to this now, just use the secret the secret code, say Tam sent you, and you want to be put on the secret cancellation list. I don't think you have to use the word secret, actually. And again, this is almost certainly not true of o all local authorities, but there will be some that have a cancellation list. So see if you can get on that. It's like a VIP guest list, isn't it? So he was on that, and actually, that helped, didn't it? That helped to move it forwards.

Tam

He did it, yeah, he got called from that list.

Mark

And then, when that happens. You know, you drop everything and you just make it happen, basically. That's that's what it was. As if you're gonna go, Oh no, sorry, we're going to the cinema tonight. Of course, you're not, you're gonna go and do that because it's more important. So he got summoned for stage two assessment.

Tam

And what's interesting about stage two is just that it. my experience in our local authority, it's not about the adult anymore. They've had they've met you, they've got all your kind of downloads. So for stage two, they took it was just me and Jay. I don't think you were there. and they took him off to a room for two hours, two two professionals go off and work with him for two hours.

Mark

And I just sat in a room so I saw nothing. That must have been a really weird feeling because, again, we don't know what's going on here. And I don't think I can't remember because it's too far back, but did we kind of want him to be diagnosed at this point?

Tam

By then, just looking at the timings, we were three years into that journey, pretty much.

Mark

Yeah.

Tam

Of wanting to understand him more.

Mark

And he's still struggling.

Tam

He was struggling more and more. Like really, by that point, he wasn't really in the classroom that much. He was that he was wandering the corridors and things. And I think if we'd come out of that with no autism diagnosis or any other idea, I would have felt very lost and not knowing where to go.

Mark

Yeah, so so at this point you are almost Hoping that that's what it is, 'cause you've got something to go on at least. Um, so you're sat there waiting, just waiting for him to come out. And obviously, he comes out.

Tam

Do they give you an indication then of what's going to happen?

Mark

They told they told me then.

Tam

I think they summarize some of the things he did. Definitely, like, as you know, with Jay, it's all about his language.

Mark

Yeah.

Tam

As you know, so there was, he just said some ridiculous. It's just some of his flowery old-fashioned language. told me some of his anecdotes and things he said, and I think they just listed a few activities that he'd done that indicated that he met the threshold for being autistic. So they told me then, quite briefly, and then said I would get a report in, let's say, six weeks' time. How long did it take? Longer. And the nurse would ring in two months' time to talk to me about support I could access. That was longer.

Mark

And I yeah, 'cause I remember then you telling me and I think at that point, even because even with Jay as the first one, it felt like we already knew.

Tam

It felt like we already knew, but I think, I don't know, maybe it's just because our world has changed. But at that point, I don't feel like our world was. We didn't know many Autistic Children or people. It still felt quite new. And so I think we knew, but telling other people I wasn't comfort for quite a long time, didn't feel comfortable telling people.

Mark

We hadn't found the neurodivergent community, the local neurodivergent community by then. So you're right. I don't remember anyone. Else who was going through the autism journey. And we shared it with a few close friends, but no one was really very Supportive. They sort of just ignored it, didn't they?

Tam

But also, you'd gone on a very big journey as well, like in your understanding of what autism was over that time. From the start to the end, you learnt so much about how autism presents. So I think you'd Done the journey during the diagnosis journey, if that makes sense.

Mark

So by the time we got there, it was like, yeah well duh, of course he's autistic.

Tam

Yeah, not quite. I think we're I think we're there now. But I think it was a big deal, but I don't I can't I don't I don't know how I felt and this is how a lot of first time parents of when children are diagnosed, you kind of you feel validated, you feel lost, you feel sorry f you feel you feel such a range of emotions. And I think I did feel and I don't feel this anymore, but I I did feel sad. Like I projected a feeling onto his what his life would look like for at least a little bit. And that I don't I've come so beyond that now, I don't actually agree with it. But at the time, I did feel something like that

Mark

It does feel like something's ended. And I think it is, 'cause I I definitely went through a p a period of grief, I think, that that that evening Because you went to bed. Yeah, that's it. And I just poured myself a massive whiskey and felt sorry for myself for a bit. Which even You know, I think everyone deals with that in their own way. And it was grief. I think it was a grief. It was this sort of grieving of the fact that his life wasn't going to pan out as we'd. hoped it would be. Do you know what I mean?

Tam

And I think it's I think it's all projection.

Mark

I I know him now in hindsight. Like I wouldn't change him for the fucking world. He's he's a Astonishing human being, but at this point, you just like you're saying, you project forward and go, Well, he's gonna be, you know, he's gonna really struggle, and that's that's true.

Tam

To be fair, I think what like knowing he was gonna face more challenges and he does face more challeng and it it's it's heartbreaking sometimes, but

Mark

That grief is really multifaceted, isn't it? It's it's that's it's grief grief for the fact that it's That things are going to not pan out the way that you wanted them to.

Tam

Well, society tells you how it's going to, how fast it needs to grow up.

Mark

But the thing is, before you join the neurodivergent gang, right. How society tells you things are going to pan out is how you just assume it's going to pan out. You don't have any other aspirations. You don't think about anything else. You're just like, well, this is what I'm going to do, right? You assume that you're going to lead. Your children, and they're going to follow. And you're going, Look, we're going to go over here, guys, and you're going to go to university and do this, and you're going to go to art college and do this. And you pan it all out, and then you sort of that autism diagnosis just shifts everything on its axis. So you're like, oh, that's not going to happen. I've got to stop. thinking like that and that was quite a s it was quite a big thing to have to face and um I remember, like as you're saying, I felt a grief for the loss of that and I felt grief for the fact that he was going to face so many more challenges in his life, that things are not going to be easy. For him, because this is a world built for neurotypicals. And I think, even with our limited knowledge of neurodivergency in those days, we still recognize that. And there's also grief for the fact that me and you were going to have it harder. You know, that's a very real one as well that I think Nies acknowledging in Turks like fucking hell, even if it's just more forms You know, it's like we're gonna have to deal with a lot more. And we'd already got two other kids at this point as well.

Tam

And I think it was also about being a slightly, and we'd gone on this journey already, feeling slightly just different from other parents. And it was that kind of you know, this is our first child going to school and all the parents are really excited. And we were kind of shifting further and further away from the majority of other parents' experiences of what it was like to have a child in, what was it, year two at the time?

Mark

Yes, because they're comparing notes, aren't they? Going, oh, you know, what after-school club is your kid doing? It's like, no, my kid is not doing after-school club because he can't bear to be around people.

Tam

Yeah, and it was just hard. It was hard for people to understand. It was hard to fit it. Like, we didn't need to fit him, but it was just, yeah, it was just different. Everything became different going forward after that, I think.

Mark

Yes. Now, obviously, you know, people listening to this at this point are. probably feeling quite depressed by this, that things change. And you find the neurodivergent community and you start to understand that actually you're not as alone as you think you are and that it is not as catastrophic as you think when it first gets diagnosed. Do you know what I mean? It's not the end of the world, it's just the start of a new one. That's is that it's either profound or very stupid what I just said.

Tam

I just think on Diagnosis Day, there are so many emotions that all adults at least are going to feel. And also everything changes, but nothing changes. So you're going home to the same house with the same child and you're Parenting, or we for us, we were parenting him in exactly the same way. So everything but nothing has changed. Or you get diagnosis and you think, okay, we're going to access all this support, and these unicorns are going to fly in and help us. And then nothing flies in, and you're still chasing.

Mark

What did you get? A fucking leaflet.

Tam

You get a leaflet.

Mark

There you go. Good luck. Read this. It's like, dude, I've already read that. I've been doing my research and I already know all of that.

Tam

And I know a lot of your guests have said the same thing because the journey is so long. By the time you get to the sort of the diagnosis day, let's say, for wanting a better word. You've done a lot of reading already.

Mark

So they sent us off with a leaflet and an autistic child. And we fizz off into the sunset.

Tam

But they also said when they saw them for that five minutes, trying to remember what they said, was, oh, we think he's got ADHD. We're going to put a referral in for him for an ADHD diagnosis. Because by then he was right he was the right A he was I come up I think it's seven maybe in Brighton but a different centre does ADHD and autism for under tens yes so it's like

Mark

Great, we're going on a different pathway, the ADHD pathway.

Tam

How long's that going to take?

Mark

Because obviously you're going to fast track us, right? He's already autistic. No.

Tam

No, it's starting again.

Mark

To the back of that queue. And how long

Tam

I'm going to say conservatively because I know now it's five to six years. Let's say it was three years minimum. So he'd have been nearly out of primary school.

Mark

When Jay got diagnosed, and I know you didn't really want to share it with anyone, but for s for some reason I really felt the need to tell people Do you remember the WhatsApp group message?

Tam

It was wonder it was beautiful. It was beautiful.

Mark

Was it?

Tam

Oh, was it meant to be antagonistic?

Mark

No, it wasn't, but I felt like I needed to tell people. There was a a WhatsApp group for his class at school. And obviously, you get the constant WhatsApp messages of people connecting. And we felt more and more withdrawn from that. over time because we're not arranging play dates and you're not asking about the homework because you know he's not doing the homework. So all of that you feel isolated from. So when he got diagnosed, I I wanted to tell people I wanted to write something in the WhatsApp group. And I don't, I think it was probably fueled by two things. I think one was to sort of contextualize his behavior, because as you said earlier. He had been perceived as naughty. So I wanted to kind of explain that actually, this is what's going on. It's not, you know, there's a different context to his behavior that you might be, you know, perceiving incorrectly. And The other one was a bit of a like a fuck you to the parents that actually were accusing him of being naughty and were not supportive. Do you think that's fair to say?

Tam

I'd quite like to reread it now, but I thought I thought you wrote it really well.

Mark

Yeah, I don't know. But I have never seen anyone in a WhatsApp group since do the same. I don't know. Does that make me weird?

Tam

No, I don't think it does.

Mark

Maybe that's my first piece of advocacy. We got some supportive messages, I think. But largely it was sort of ignored, wasn't it? I didn't feel like it made much of a difference, but I needed to say it, I think. It was the first time. I I think partly it was because this was such a little furtive secret between us. Because we'd had so many conversations and we did so much reading and we were so kind of invested in understanding about autism. but we weren't sharing it with anyone else. So almost sort of that message was almost like coming out.

Tam

I think it was the beginning of us being really big advocates. And shouting about things and not hiding things. Like, I think that was the beginning of that journey for our family.

Mark

Yeah, yeah, yeah, definitely.

Tam

I think that was probably the turning point where we started to own it and not hide it or be embarrassed. You know, whatever. You know, this is our child, accept them as they are.

Mark

Yeah.

Tam

Kind of mantra.

Mark

Absolutely. And that has continued to this day.

Tam

Yeah.

Mark

So Jay was diagnosed, I think it was a three to three and a half year wait with the NHS CAMS route for ADHD. And actually, we didn't fancy waiting around that long, funnily enough. So that is when you looked into private routes, didn't you? For ADHD. How did you go about that?

Tam

looking at local neurodivergent groups that we were part of and seeing other people copying other people.

Mark

Yeah, and this is the this is the thing, isn't it? This is where we started to embrace the local neurodivergent community and ask questions and lean on people then be inspired by people and meet up with people and then you Yeah, it really felt like we kind of plugged into something at that point.

Tam

And actually, what's in going back to sort of reasons for diagnoses, which we talked about earlier, what was interesting with the ADHD one? Again, we just wanted to know. Like we at that point, and things have changed a lot since then, but we didn't interested in medication. We weren't really interested in strategy. We just wanted to know whether he had ADHD, which again, my mindset has changed now about whether I need to know these things. So the private company that we went with had a quick waiting list. It wasn't super expensive, and we just found out that's all we wanted from it. at that point in time.

Mark

It was just like a... was it a phone conversation?

Tam

It was and it was lots of forms and some phone conversations. It was like a Zoom online. Again, I had just this I had an urge just to know what the autistic and ADHD was.

Mark

But to be fair, again, we already we kind of knew though, right? I think ADHD was more prevalent than autism at that point. From what I knew about it, obviously, in hindsight, probably not. But so I think again, we both knew, but it was just part of that building up the full picture. So with the private route. they turned it around really quickly, didn't they? From from applying and I think we heard back within a month after filling out the forms and having the online thing The battle, the real battle, was then getting that private diagnosis accepted by CAMHS. Right? Because obviously, you need to get them accepted by CAMHS in order to be Under the NHS, right?

Tam

It depends what you want. Like for school sometimes schools won't give much validation to private diagnoses. So for school if you want a school to treat your child as if they've got ADHD as if they're ADHD Sometimes if it's a private diagnosis, it's less valid. Yeah, and then the reason you'd want CAMHS to accept your diagnosis is to access medication for free. I don't know if it's national, but definitely our CAMHS, the only service they provide for ADHD medication. And if you get accepted by CAMHS and don't want to medicate, they take you off there.

Mark

Yes, or whatever. Maybe get another leaflet if you're lucky.

Tam

Yeah, so that was a big old battle getting him. And he now has got a CAMHS ADHD.

Mark

Yeah, because they didn't accept the initial private diagnosis, even though it follows NICE guidelines and they they were on their list of approved suppliers I think they because you checked all this before you said and then they went, oh no, never heard of these guys. It's like it's on your fucking list, mate.

Tam

It's a classic example of every person having a different journey. Some people were successful with this company, some people weren't, some are on the list you know, it's just but he now it took a long time, but he now is on their list.

Mark

Even though he's not interested in medication. You fight that fight for like three years and then he turns around and he goes, nah, I don't like the way it makes me feel.

Tam

I was like, oh, for fuck's sake. Gives me a tummy ache.

Mark

No, it doesn't. Anyway, we've gone from first raising it with the school in autumn term of twenty eighteen. all the way through to the final ADHD diagnosis in December twenty twenty three. That is five years. Five years to basically get through that whole process. And that was, you know, pretty torturous.

Tam

It was also being extremely proactive the whole way.

Mark

Yeah, yeah, exactly. We weren't just sort of waiting for shit to happen. You were on it all the time, and that is, you know, for that journey, that was the best case scenario.

Tam

I don't think we'd have it if we hadn't been proactive. I think it would have got lost along the way. I don't think it would have got to the end.

Mark

Yeah, yeah, it would be stuck. in some the bottom of someone's drawer somewhere. So that was Jay's journey. Now Otto's diagnosis journey was very different because with him he was struggling earlier on. And I think he needed support more evidently earlier on.

Tam

And I think specifically in the school environment, he was not coping in school at all.

Mark

Yeah, there were lots of tears. He was exhausted. like every single day when you come out of school, and there were meltdowns every single day. And it was heartbreaking. And at this point, he's again five, right? So this was the start of year one. Again, reception is a bit too soon to tell because it's all a bit bonkers and they don't you know, and the way that they teach them is very different and it's much more play based and So it's very difficult to tell at that age, certainly in the way that our kids present. But he was struggling a lot more in school, and we decided that we needed to start the process. But having been through the process with Jay, And having known that it could take up to five years to get any kind of diagnosis, I think we both felt he's not going to cope for that long. Like he didn't want to see him struggle that much every single day until the three-year wait it was going to be for the autism diagnosis. we had quite a short conversation about whether we go private. And really, the conversation was not whether we should go private, but whether we can afford to go private. Because that is a huge consideration with all of this. And we'd you know, we'd heard, I think, from other people in the local NeuroDivergent community that they'd been private and it'd been really quick, right? I mean, you did a lot of research there, didn't you?

Tam

It was a really tricky one because there's an issue of getting over the fact that you're paying for something that you shouldn't have to pay for, in my opinion. So there was that kind of decision and then he was in such a bad place. But then you need the NHS to accept your diagnosis. There's a you know, there's loads of examples of parents using companies like I guess the one we use for Jay's ADHD that then doesn't get accepted, so then you don't access the support and Otto was in desperate need of support. Like his mental like it was yeah. So then I had a short list of companies that I'd been told locally had been accepted, but then loads of them had waiting lit like I there was one I was on the waiting list for the waiting list

Mark

So ridiculous

Tam

Like, you know, these kind of there was so, and I had like a list of them, and you're ringing rounds, and then you're like, I don't want to take a chance on one that might not be accepted.

Mark

This is for private as well. This isn't just NHS. This is like there's so many people that need these services.

Tam

And again, with Otto, and you'll agree with that, still, his needs are really complex. Like, he's really like, we Sort of think we know quite a lot now. He's still really complex to work out what's behind the behaviors and what he's so complex. I think we also were like, we don't just want to get a diagnosis. to say we want to understand him more as well. And it was different from Jay.

Mark

It was the reason being that a private diagnosis is holistic, so they're also diagnosing For ADHD and autism at the same time. And what we didn't want to do is get one and then go to the back of the queue and then get another. It's like, I need to know everything. What can you tell me about this child?

Tam

What I didn't want was like a tick box diagnosis. because I wanted to understand him more than that. And actually, even with um Jay's diagnosis, it wasn't tick box, but it wasn't that thorough. Like he met a threshold. And we understood him more. We needed to understand Otto more. So I was struggling to find anywhere that met various criteria. And then I met a wonderful person on a ramble of it was a neurodivergent parent ramble. And you just it was people getting out and having a chat. And I met a wonderful woman who gave me a tip of somewhere in London I'd never would never have heard of. No. And it had been accepted locally and yeah, we went with them and they were amazing.

Mark

Yeah, for us deciding to spend that much money on something is not an easy decision. And we had to get a bit of help from Parents, I think, and go down the back of the sofa and scrimp and like, but I don't regret it for a moment. It was money very well spent.

Tam

And for us, he was in crisis.

Mark

And we managed to scrape the money together and it did it absolutely lived up to what we were hoping it would be. So I think we can name them. I think they deserve to be named because they were fucking brilliant. Um so this was the Effra Clinic in London. And did we apply for Otto to do yeah, yeah, we did all that. We did organisation work as well. Yeah. Okay.

Tam

I I personally think it's really important to To try and use the NHS pathway because that's what it's there for, and also just for their records and for children on it.

Mark

So before we applied for private, we'd already started the NHS pathway.

Tam

And the school were very accommodating this time.

Mark

They listened to us this time. They believed us. They couldn't, yeah. And also, it was very evident just by the way he presented, it was so much more obvious than it was with Jay. So, you started the NHS diagnosis pathway. and you feed him into the slow moving cogs of the NHS diagnosis machine. And while we wait for that to happen, I think that's when we started considering private and we applied for private. and Otto had just just turned six. And it took us two months to get the first appointment. So we got the first appointment in the October, having applied in the August. And I took him. And that was one of the most fun experiences I've ever had with Otto. Genuinely, it was it was for some reason it was wonderful. So I it was in London, so I took him for the whole day. and we went to London and we went and did the the assessment in the morning and he was wonderfully neurodivergent for that. He absolutely smashed it out of the park. We rung the bell and he knew what it was. I explained what it was. We were gonna you know, these people were gonna look and These people were interested in his brain, I think was how we phrased it, and they wanted to tell us a little bit more about how his brain works. So he was on board with that. But crucially, he was on board with that because it was one-on-one time with one of his parents. Because that's one of the things that he loves more than anything else in the world. He's like, sweet, we're going to London. Great. I don't give a shit what we're doing. We're going to London and I'm going to be with you. So that was, so we had a great time. Lovely journey there. got to the place and w when they opened the door and said, Oh, hello, are you, Otto? he barged straight past them, got on his hands and knees and started playing with the carpet on the stairs It was like so autistic. They could have just diagnosed him then. So I'm having this conversation with this child psychiatrist, and Otto is literally climbing on the sofa behind me. And just going wild, and I'm just going letting him do it. It's like, yeah, you need to see him in all of his glory. You crack on. And then he went into another room and he had another meeting, I think, with an occupational therapist who talked to him a little bit as well. And I had a one-on-one with the child psychiatrist. it just felt like we were being heard, that they were actually listening to us and taking it as seriously. And, you know, there were multiple people involved, which is, yeah, it just kind of felt validated. We then left, and the rest of the day, me and Otto walked around the whole of London. And it was just like this one-on-one time where We walked fucking everywhere, like Leicester Square, Trafalgar Square, Buckingham Palace. We it was yeah, it was it was awesome. We went and had burgers.

Tam

Is that when you went to Five Guys? 'Cause he still talks about the milkshakes from Five Guys.

Mark

It was genuinely a magical experience. That was the stage one, and they then recommended us for a full assessment. Pretty much immediately after that. So, the follow-up appointment was then December. So, again, only another two months. So, at this point, we've gone from first contact to stage two assessment in four months. And that's when you took him, isn't it?

Tam

Yeah, and that's when he did like loads of tests. And it was just I can't remember the details of them at the time, but it was just lots of cutting-edge research. They were trying new techniques to sort of Like eye scanning, looking at flicking different like computer games.

Mark

I've got a list of all the shit they did because I read the report. So he saw a clinical psychologist, a child psychiatrist, an occupational therapist. They did interviews with both of us. He did an ADHD assessment, a QB check, which is the computer one that tracks your motion while you're doing a task to see how much you move. And he was fucking off the charts because ADHD. They did an autism diagnostic observation. They liaised with his teacher. They did a sensory profile questionnaire, and then they also did a cognitive assessment, a Cambridge cognitive assessment, to assess for weaknesses in learning as well. So, that is like the full MOT, right? That is a full service of everything I think that they could look for. And it was. Really impressive. I think we definitely got what we paid for, it felt.

Tam

Yeah.

Mark

So we received his diagnosis basically six months later, right? Six months after first concert.

Tam

Yeah, and it was such a comprehensive reports, the NHS accepted it for both diagnoses. Much quicker for the autism NHS pathway just because it's a different it's not CAMS, if I'm honest.

Mark

Yeah, yeah.

Tam

There's a waiting list, but CAMS Agreed it was valid. It was a valid assessment. It just took a while to get to the top of that list again.

Mark

Yeah, but he got the dual diagnosis and the report was thirty-nine pages long and it was I've read it again recently and it is staggering. It's like it's a really interesting blueprint into how our child works, what he finds challenging, what he's good at, you know, and it just felt like they they saw him. And yeah, I think it was really handy. I still have no idea what goes on with him a lot of the time.

Tam

And I think the only caveat with that decision of going private wherever you choose to go. If you are looking for medication for ADHD, there is a cost involved with that. And because we chose a London clinic, if we'd wanted to, start medication at that point. We'd have had to tra we'd have had to go to London, pay for appointments, pay for Medication, and it would have been really expensive and too much travel time to be feasible. So that is the caveat if you're looking for medication route, maybe don't choose a provider that's not local.

Mark

Yeah.

Tam

That's aside from the cost.

Mark

But I mean, crucially, his autism diagnosis bypassed the NHS referral, and that had a ten-month head start. So it was like the express lane. We are very fortunate in that we managed to scrape together the money to do it. Like I recognise that, and that is a huge. Huge expense. So, like, you know, full transparency, I think it was about £2,000 at the time. And, you know, it's probably more now because it's in more demand.

Tam

And I just know local providers who are really rated here. their costs have maybe doubled in the last few years because there's so much demand. Companies unfortunately are putting their prices. So that's a separate conversation really.

Mark

Yes, it is. But I think from our perspective, we felt like it was money that was that needed to be spent, and then ultimately, at the end of it, it was well spent, I feel, because he got his dual diagnosis in a much, much quicker time than Jay.

Tam

And the learning point in terms of, if I'm being totally honest, we, we. ignored some of his behaviors for a bit longer than we should have just because Jay was going through things and um

Mark

I think part of us didn't want to believe it.

Tam

Or hoping it was a phase. And actually, Joe what, and I still think this to this day, the and I know that everyone says every autistic person is different. the boys' profiles couldn't be more different. And in terms of trying to access support, trying to meet both their needs in the same room is nigh on impossible a lot of the time. So it was a real leveller, actually. It was a real learning point that how different you can be.

Mark

Yes, yeah. So part of it was not really recognizing the same behavior in Otto that we had had with Jay. And partly was not wanting to look at it too much in case it was autism because we didn't want to have to deal with that again, I think.

Tam

And I'll also be, like, totally honest, not being those parents, like, oh, there's something, there's something going on with this one, too. And there's something getting on with this.

Mark

Yeah, yeah.

Tam

There was a reticence there, I think, to ask again.

Mark

Yeah, because it's not like we want that. I think that sometimes you get that judgment from people that you like you want your children to be autistic. No, I don't. I want to understand what's going on with them. Turns out guys it's autism so you know my suspicions were correct

Tam

no but also the reason you know when we were saying I was saying he was in crisis he got an EHP very soon after that point because he was not coping in school and so that became the evidence for his EHCP that has kept him in school so far.

Mark

Yes.

Tam

But I think it was that was where he was heading and that report was useful for evidence.

Mark

Yes, yes. Whereas Jay wasn't so much in crisis. He was struggling, obviously, but there was a different world. And his EHCP came a lot later. That's a different episode. What is interesting though with Otto's diagnosis is how differently we treated it. when we heard the news, right? Because at this point we are I mean, it wasn't that long after Jay's, right?

Tam

No.

Mark

Because we'd gone the express route with Otto and Jay had taken so long We heard from I think it was only it was less than six months after Jay's, wasn't it?

Tam

Yeah.

Mark

So so Jay got diagnosed. Autistic ADHD, and then six months later, Otto joins in. And the reaction that we had at that point could not have been more different than it was with Jay's. Because with Jay's, it was like a shock to the system. And with Ottos, it's like, yeah, come aboard. You know, I don't know. I don't know why it felt so because, again, we knew, right? We knew before we knew. But also. we'd already accepted that this was how life was going to be.

Tam

So I think it sort of creeps up on you, like, how quickly changes become embedded in your household. So like just actually we were at that point living in a neuroaffirming household, not really realizing everything we were doing to make things run relatively smoothly for us. So it was it was it you know, you go back and everything's the same. You've got the same children, the same house, same child, it's nothing actually changes.

Mark

I think that might be what it is. You realize how everything stays exactly the same anyway.

Tam

So yeah, that's interesting. But I also do remember, and this is different from other people's experiences, it was viewed with Otto. What was different was it was it was viewed positively in our household. Like it wasn't and I know other parents have different things, have to explain diagnosis of what it means. And actually, we've never had that. The words have been celebrated into understanding their brains. And I'm I think that's good. Like the diagnosis for the kids hasn't been a big deal for them personally. They've just grown up, that's who they are.

Mark

Yes, and we do we have, you know, supplemented that with books that have helped. They're like all dogs have ADHD and is it all cats are autistic? Like they're great books because they read them and go, Oh, I do that. That's what I'm like, you know, this cat squished in a box. They're going, That's what I'm like. And it's a it just helps them to own their traits and their differences. And I like oh, that's a really positive thing. So, yeah, I think that's always been I think. So when Otto was welcomed aboard the Neurodivergent train, it didn't feel like as big a gut punch as I think it initially did with Jay. I want to reflect back on. how I described India when Neuroshambles first started. So I'm just going to play the little clip of how I introduced India. "I've also got a six-year-old daughter, India, who is suspected neurotypical. I say suspected because I have learned by now not to count my chickens. I'm going to wait and see how this one plays out. Before I make any real judgments on this" You will notice that I say suspected neurotypical because at that point, I didn't really know what I was looking at at any point. I thought that uh, you know, when you look at the way that Jay presents as opposed to the way that Otto presents, and they're so different and they're both autistic and Both ADHD, I sort of have to throw my hands up and say I don't really know how it presents because it's so different and multifaceted. So I didn't ever commit to India being fully neurotypical, but I think it's fair to say. she presented the most neurotypically at that stage. Would you agree with that? Yeah. So I think, you know, to a degree I felt like I identified with India because she was presenting so neurointuitively. I was like, oh, I've got one. Because at this point, we're already having discussions about your neurodivergency as well.

Tam

I think I was on the right to choose pathway at that point.

Mark

So you were already seeking your diagnosis, and Jay and Otto were already diagnosed, and I was just looking at India going Please be one of my lot. You know, kind of have another an ally, a neurotypical ally in our household. And India was doing everything she could to convince me that she was on the same team. And at some point, I think you I think it's fair to say with all of our kids that you've been the one that first spotted it. You've certainly were with Jay when you were like, I think, I think that there's something going on here. And I sort of. Glossed over it a little bit. I was, you know, I was definitely later to that party because maybe I didn't want to believe it. Maybe I just didn't know what I was looking for. Maybe I just thought, well, we'll work it out eventually. Let's not, you know, force it. Either way, you were the first person to spot it in Jay and in Otto. And I definitely didn't want to hear it when you were talking about India. But you were like, she's a lot like me when I was a kid. I was like, don't say it. La la la la la la. I don't want to hear it. I don't want to hear it. So there were definite quirks there. She would never ever let anyone kiss her. In response, she would lick them. I mean, that's not. That's not typical, is it? And had loads of sensory issues and stuff. I just sort of glossed over that, but eventually, at some point.

Tam

And also, Mark though, to be fair.

Mark

She was coping.

Tam

She was doing okay. Like she had friends in school. She was wanting to go to school. She was broadly happy at she was happy at home. But then she started again, I think, showing signs of not coping, which has always been the sort of drive to find out more or to get a diagnosis.

Mark

You're super attuned to that, I think. And that's because I'm largely oblivious. to those kind of things. So I'm I'm very grateful and very lucky that you were so kind of on top of that because it meant that we set our kids on the diagnosis journey a lot earlier than we might have done if it was just left to me. So you spotted that what in school?

Tam

Yeah, or like how different she was in school to at home and then just when she started having meltdowns at home, kind of for a long periods of time and

Mark

Yeah, yeah, yeah, because her meltdowns, I think, are actually they're more severe and long lasting than Otto's or Jay's.

Tam

And I think you're right, because it reminded me of things I did when I was younger and sort of not being able to get out of them and seeing her getting herself in a state that she then almost willfully wouldn't get out of. It's brought back a lot of memories of my personality. And so I think that I think that, you know, there was extra insight with India. from her triggering memories of my past?

Mark

Yes. There was actually wa while we were sort of suspecting that India was autistic but not really addressing it, we had do you remember, we had a long running hashtag thing going on.

Tam

Oh, on our messages to each other? You need to dig them out because they're funny.

Mark

Yeah, I did. So we we do hashtag not autistic. Right, so we'd be like, oh, how's it going? And then it would be like, India has been crying for an hour now because of the stick she left in the woods last weekend. Hashtag not autistic.

Tam

India has been a dog for the whole day and is currently eating her dinner from a bowl under the table.

Mark

Hashtag not autistic. Yeah, there were so many of those.

Tam

I think, Mark, what's interesting is like how we were getting quite, and we'll talk to Mark later, I think, but we were getting a lot of joy. from it.

Mark

Like we weren't taking the mickey out of her, we were kind of embracing her, right?

Tam

Yeah, her uniqueness. And I think it was it was an interesting pro to actually be actively enjoying it. a lot of the time.

Mark

Yes.

Tam

Not the crying for an hour, but kind of seeing the f seeing the lighter side of it, I think was really helpful for both of us, maybe.

Mark

And it's definitely informed our outlook, just generally, I think. And it's why I can do Neuroshambles. Why you know, I can look at the positives because it's not as disastrous as it first seems. You can celebrate it and look on the positives, I guess. So, we obviously strapped on the boots and set off on another diagnosis pathway. this time for India.

Tam

We did we did exactly the same as with the boys, the NHS referral, and we had I took her to her stage one, which was quite quick. It was in six months of referring her, um, the one where they do the developmental history. And I took her um She was really funny in the me shouldn't speak. Actually, she wouldn't respond to her name. She made signs to answer questions. She was really funny.

Mark

She was asked her name and she shrugged, I believe.

Tam

Yeah, and then she wouldn't talk and made little speech bubbles for toys to speak on her behalf. Anyway, but it was interesting. I really can't remember her name. The woman was amazing at that one. Um, because obviously I was coming from a I've done this twice before, I've got two bottle you know, so um but she gave India a lot of attention and when we got the report, picked up on a lot of things I hadn't spotted. particularly with eye contact and eye contact being forced or over exaggerated or very deliberate. You know, just things I hadn't spotted. This woman said to me with about India, she's going to panel. But we're gonna fast track it or whatever. She she used some kind of language this time that said that she implied quite heavily. And then she just looked at me directly and went, Just don't forget she's a girl and don't treat her the same as the boys. And I, you know, at the best of times, I don't like gender stuff. But it was a really I think it was she did it in a very affirming way and was basically telling me, don't think you know everything already.

Mark

Yeah.

Tam

As we know. Injury's a big masker and is unmasking now. And it's amazing watching her unmask. But she basically told me to treat my children individually in a lovely way.

Mark

Yeah, that's nice.

Tam

Yeah, that is that is good.

Mark

And you know, just to refer back to the um hashtag not all experts from two episodes ago. Some experts are amazing and they see you and they support you and that's another one that

Tam

She was amazing. So she's now on the waiting list for her second appointment with the NHS.

Mark

With the NHS, okay.

Tam

Yeah. And l and last time I rang They said it was a two year it'll be two years two more years before she'd get an appointment for that. So that's up from when Jay did it.

Mark

This is the crash track that she's talking about, right?

Tam

Well, this is the yeah, this is yeah, but when Jay had it, Jay waited 14 months. Yeah. however many years ago, six years ago.

Mark

So it's now at least two years. And the woman that's just the increased demand, I guess, right?

Tam

Yeah, and COVID backlog and everything. Yeah. And where we live has a particularly high rate of referrals for various reasons. And the woman on the phone said, I would recommend you do right to choose at the same time. Because it might be quicker.

Mark

Did you know about Right to Choose at that point?

Tam

I knew about I was on the Right to Choose pathway, but I at the time I thought it was only applicable to adults, so I didn't know children could be put on Right to Choose. And I remember there being some chatter on some of our NeuroDivergent groups about Right to Choose. So then I went back to them and looked that up because there's a process there as well, which maybe is what we're going to talk about.

Mark

Yeah, so we went to Right to Choose and How does it work?

Tam

You go to your GP. So now, because actually it's funny, quite often as a key, when you look at key adults in your children's journey, GP comes up quite frequently. But our children really haven't had to go to the GP for any of this. But you go to your GP. And you say the concerns you have about your child with any evidence, I suppose. And then you say, Can I do the right to choose pathway for ASCA, whatever whatever you're asking for.

Mark

Right.

Tam

And it's up for the GP to say yay or nay.

Mark

So you have to like tap your nose when you say it.

Tam

I presume people have had very different experiences. And our I again, our GP has been and you've mentioned them before, have been always been really supportive of things we've asked.

Mark

So just out of interest, why would they not refer for the right to choose pathways? My understanding of it, and correct me if I'm wrong, is that the right to choose pathway doesn't cost the NHS any more money, but it because of the massive backlog in NHS appointments, they are outsourcing to private suppliers to help to clear the backlog.

Tam

But it's costing someone money.

Mark

It's costing the NHS money, but just as the the journey would cost money within the NHS, they're not being charged private practice prices. That's my understanding of it.

Tam

But presumably, if they refer too many people, then maybe that costs their local NHS more money. I don't know. There'll be a cap somewhere.

Mark

Whatever reason, it is almost certainly down to money.

Tam

The fact that you have to go to a GP and know to say the word right to choose. A GP won't suggest this to you. You have to know it's not one of these one of these secret games.

Mark

Yes. What? So if you get it in the wrong order, it's like could be it says no.

Tam

No, but if you go to a GP and say, I think my child's autistic They'll refer you to the NHS pathway. But if you go to GP and say, I think my child's autistic and I want to do the right to choose pathway. So it's cut. You have to use that language or they won't suggest it to you.

Mark

Jesus Christ. It's such a fucking game, isn't it?

Tam

It's a game. It's totally a game, which is why community groups are so important.

Mark

Yeah.

Tam

Our GP is great. So they said yes. And they send you a form, obviously. You then have to say what company you want to go with. So there are a list of right to choose companies. Some are better than others. Some do children, some don't. Some do ASC and ADHD. Some just do ASC, some just do ADHD, some are online, some are in there's all these variables. So you have to come armed with what company. you want. And then they will send you forms for that company.

Mark

Then you apply to the company that you've chosen and you go from there. So that is what you did with India, and you applied October last year.

Tam

And then the company sent me loads of forms that had to be completed the week before Christmas. And the school had to also complete loads of forms for the week before Christmas.

Mark

God, how did you actually get them to do that?

Tam

I sweet talked the school and they got yeah, they did they did do it actually.

Mark

And again, this is where it's so crucial to have a good relationship with the centre of the school. But, like, fortunately, from our perspective, we spend a lot of time with those guys. We buy them chocolates at Christmas. I think that might have helped.

Tam

And again, it's like starting the process again. So these forms then tell the company whether you meet the threshold in two settings. That was the point of those forms.

Mark

Yeah. So we did that. You did that.

Tam

And she met the threshold for autism but not ADHD because the school didn't submit enough evidence for ADHD.

Mark

Right. Okay. So then India went for her stage one assessment for right to choose. This is different from her stage one assessment for NHS. She's got to go through stage one assessment again. They can't just read the notes that the NHS have provided.

Tam

No, but it's also different. Basically, there's two meetings: there's one where they test Verticom as the child, and there's one where they get a developmental history from the parents.

Mark

Right.

Tam

It can be done in either order. But yeah, you're right. So in January, I took India quite a f long well, an hour and a half away to have her autism assessment.

Mark

And what are the key hashtag not autistic moments of that?

Tam

She wore. A fancy outfit to this assessment.

Mark

Describe it.

Tam

This fancy outfit consisted of wearing one of your shirts and a fedora and a walking cane. And then she packed her bag. I always say take some toys 'cause she loves cuddly toys. And she put some toys in. And then she put two dumbbells, two two kilogram dumbbells in. That we've been using on a workout, and insisted they had to come too in case you needed to do some exercise whilst waiting.

Mark

You were like, Yeah, crack on, it's fine.

Tam

And then During oh I didn't go into the assessment, it's the one where they checked the child, India became furious because they wouldn't let her use her dumbbells or Sedge toys because they had to use the assessment only toys.

Mark

Are you shitting me? Why wouldn't they let her use it all? Well, I mean, maybe that was part of the test. It's like, oh, let's see what happens when we withhold her dumbbells.

Tam

But out of all the children in the waiting room, it was a busy, it's busy. This company's quite big. There were a lot of children having assessments. She definitely drew attention with her outfit compared to other children that were there.

Mark

I think something you also told me, and you could confirm or deny this Did she not make a Lego walking stick while she was? Yeah, she made she also made an additional. So she'd already had a walking stick. Yep. She's walking in with a fedora, an oversized shirt, and two walking sticks, like a 1970s soul singer. What a fucking legend. I mean, I can't imagine it would have taken long to assess that. She's just walked in the door and gone, yep, you pass, off you go. And she'd have walked straight out again.

Tam

She wasn't in there the full hour. They said she was going to be in there. But they don't give feedback this meeting.

Mark

But they're like, we've seen enough. We've seen more than enough.

Tam

I got given some feedback. What was interesting, the feedback I got given was that she moved around a lot and didn't really listen. And has she been referred for ADHD as well?

Mark

I mean, yes, she doesn't meet threshold apparently. I don't know whose threshold that was. So stage one happened.

Tam

So then they need the developmental history. And so they just ring you to book an appointment and they didn't ring. So we rang and got an appointment.

Mark

Right. Okay. So again, this is due to chasing. And this is where you come into today. So by a strange, strange quirk of coincidence, Tam and I had had this recording booked in for quite a long time now. And the stage two assessment then said, We can offer you an assessment on this date, which is the same day that we're doing the recording. So we've basically come straight out of the stage two assessment. You've not you've not let me talk about it with you. No, no, no. So, neuroshamblers you are hearing on the day of the actual assessment about India's diagnosis. Do we need a drum roll? Of course you don't. She is obviously autistic. Um so she passed that one and they went, Oh, by the way, we're gonna refer her for ADHD as well. It's like, yeah.

Tam

And they were like we've got enough evidence from meeting her.

Mark

Yeah, that was really interesting. So we had a phone conversation. That was me and Tam and India. And he was like, I don't need to talk to you first. I want to talk to India. I'm like, okay, crack on. A lot of that conversation with him, she was pretending to be a dog. And she refused all his questions. Refused all his questions. What school do you go to? I don't know. And that was really funny, because at the end you said to her, when he was off the phone, you went, What school did you go to? And she told you the name of the school immediately was like, Ah, you say you do know So, you know, yeah, refused all his questions and said that she loved her cat, but was completely non-committal when he asked if You loved mummy or daddy.

Tam

She just said my cat again.

Mark

Yeah, refused to commit to that one. He had the conversation with India, and then she left. And then it was me and you, and this guy who he's obviously got this list of questions to ask about the developmental history. he'd ask something and we would have so many different stories that we could tell or examples that we could tell. And he's struggling to keep up the typing. Bless him. And at one point he was laughing. He like he well, quite a lot of the time he was laughing at the stories that we were talking about.

Tam

But we were we were laughing too with our stories.

Mark

Yeah, of course. There, no, he's not laughing in us face as we are like ashen faced and stony faces serious. No, he was laughing along with us and at one point He actually had to correct himself and he went, I'm not supposed to laugh at this and like sort of tried to compose himself. But it was quite a joyful thing, right? It was weird.

Tam

He's a really nice man.

Mark

Yeah, he was really nice. And we were making him crack up. And then it came to him sort of adding up the scores for all of the interactions. And he went, This is the highest score I've ever seen, was his actual comment. The highest score I've ever seen. Part of me, Tam. Felt a little bit proud of that. How did you feel?

Tam

It was when he clarified the numbers.

Mark

Yeah, yeah. Normally we look at a score of between fifty and sixty being suggestive of autism. She has a score of one hundred and one. It's like she's broken records. She's a record-breaking autistic. I don't know. I just I felt I don't know. Again, it's a very different feeling to how it was with Otto and with Jay. If you look at the difference between what happened when we were told that Jay was autistic And what happened that when we were told that Otto was autistic? And just the sheer fuck it, this is who we are, of getting India's assessment was actually kind of um, yeah, it's a very strange timeline.

Tam

But I think I think with India's we knew, so that's why we pushed for it. But actually she hasn't been majorly struggling. So we're kind of enjoying India being her.

Mark

Yeah, that's interesting, yeah.

Tam

And celebrating her and actually the biggest journey with her is unmasking at school. Like and that she and she is starting to do that more and more and I'm really proud of her. And actually, I feel like That's why we can laugh and kind of it doesn't we don't care. Like this is this is who we are, but actually she's in a different place and we're hopefully she's going to grow up in this environment where she can just be who she is and not give a hoot like everyone else in the family.

Mark

So we got off that call and then we uh got India and we pulled her into the room and we said, Right, so we've been talking about how your brain works. We can tell you now that you are autistic. And what was her response, Tam? When you said it, she did a tiny little yes Did you not hear that? Did you clock that?

Tam

No.

Mark

It was tiny. It wasn't a fist pump. No, it was like yes. And then you tried to give her a high five, but she never responds to high fives.

Tam

No

Mark

I try and give her a high five, and she headbuts it. So she gave a little tiny yes and then started playing with the buttons on my shirt while we talked about if she got any questions or she wants to know anything about autism, you can ask us. She didn't want to know about that at all. She wanted to go. Go downstairs and play. Jay's response was altogether more interesting.

Tam

When I went into his room and said, just so you know, Jay, we now know for definite your sister's autistic.

Mark

Yep, and then he didn't look at you.

Tam

Nope.

Mark

He looked me dead in the eye and he just said, get out, loser. 'Cause I'm the only neurotypical. I'm now the loser. Which we all knew. Anyway, that was a given.

Tam

And then I went down and told Otto, I think you were still upstairs. Otto was playing some kind of game on the computer, and without missing a breath, he just carried on telling me about his game as if I'd never spoken.

Mark

Yeah. So mixed reactions in our household. But generally, I don't know. It feels strange to be uplifted by having it confirmed that all of your children are autistic with ADHD. But I do.

Tam

But with India's journey, actually, if we're looking at sort of current information, right to choose currently was really quick So we from beginning to end, it's taken us, what, less than eight months? And it's been a really actually painless process relative compared to the other journeys we've been on.

Mark

Yeah, absolutely.

Tam

So actually, if I was going to encourage people, that is something I think people should be Looking at why it's still an option because it may not be an option.

Mark

That's loving that you're kind of saying while it's current because we've heard very recently from ADHD UK, who alerted people to the fact that there is some kind of behind doors shenanigans in NHS terms and conditions that basically mean that the pathway to right to choose is ba is going to be throttled and that they'll be massively restricting the amount of people that can use it, which is obviously going to push waiting times back up again. So it was a campaign to let your local MP know about it. I put it on the Neuroshambles Instagram account and told other people. So It hopefully other people saw that and emailed their MP to kick up a stink in Parliament because the idea is that it was you know the the right to choose was ratified by parliament in two separate parliaments. So, if it's going to be removed, it needs to go through Parliament, not through NHS terms and conditions.

Tam

And it is England only, isn't it? I think that's the only thing that's important. It is England only, unfortunately.

Mark

Yeah, so hopefully, the the people kicking up a stink will get the MPs to raise it. We haven't heard anything yet. It's still too early to tell. But i i if it all goes ahead as planned that will be actioned by the end of February, I think, which is shocking and absolutely fucking shameful and scandalous and needs to be looked at. So hopefully By the time you hear this, that will have been resolved, and right to choose will still be available as an option, because it was a very positive experience from us. And crucially, we had sort of the the speed of the private diagnosis and the cost of the NHS one, which is the best of both worlds, right? So that concludes the diagnosis journey of our three amazing neuro different hooligans. So obviously, this is in the UK. I think I should caveat this by because obviously we've got listeners from all around the world and I'm aware that This is going to be a very different experience for people in different countries. So I just wanted to caveat that everything we talk about in this episode is only going to relate to the UK. And unfortunately, we can't encompass anyone else's experiences in different countries.

Tam

Yeah, but I think I think Mark, you're correct. I think Jay was essentially NHS, Otto was essentially private, and India was essentially Right to choose, but even within that, those options, I think it's different depending on where you are in the country and who you contact to get onto those pathways and who you it's Every sort of region operates slightly differently. So you need to. It's a lottery. But this is tapping, it's also tapping into your local groups. That's how I found out most of the things I found out locally: the local groups who've been through it before, and I'm passing on that information. to people who are going through it now.

Mark

Yeah. So I think, you know, if you're listening to Neuroshambles and you are new to this journey and you have suspected neurodivergence Or if you're kind of already on the pathway and you're just waiting interminably for the next appointment, I think the takeaways that we can really offer from all of this really is log everything. Even if they're already in the pathway, just make logs about all the things that your kid is doing that is unusual. There are actually apps available. To allow you to do this, I think Hibi is one that we talked about in a previous episode.

Tam

In addition to logs, it's tap into your local groups to find out what companies, what pathways, kind of little tips of how to approach people. And then it is if they're in school. it's starting that dialogue with the teacher and the Senco and getting them on side because if they're in school, you need the school to support you and trust you.

Mark

Yeah, absolutely. Yeah. So logging and also crucially, one of the most crucial things you can do, as you've alluded to, is chase them up. Constantly chase them up to make sure that you're on their radar at the top of their to-do list. And that is something that you have been phenomenal at Tam. Partly because you're ADHD and you have millions of lists for everything and you've got a list for I mean, how many Lists have you got for chase?

Tam

I've got list for lists for lists, reminders for reminders, okay.

Mark

So, so you constantly get reminders to chase people up, and then you get it. And you Do it while you're doing other stuff, while you're cooking, you'll be on hold to chasing someone else up. Um, so it's become part of the fabric of your life, and it really is that kind of important to make sure that you're you're on top of it because it's it's just an interminable faff and the more you can make sure that you're in people's grill to to get them to move you on if at all possible, the better, really. I think one thing that we also need to point out is that early on in the journey when all of this was going on, we had to carve time out for you to do this almost like a full time job. Because you work part-time and not because you were kicking back on the other days, but because you're spending so much time writing application forms and chasing people up and going to meetings and all of that side of things. So you can't underestimate the sheer amount of work involved in in doing this and making sure that you're kind of on top of it, which is, you know, another reason why it's so unfair on parents of neurodivergent kids. If you are just starting out on this journey, I just wish you the best of luck. Stay strong. You know, it's it's Yeah, it's not easy.

SECTION INTRO

It's not all rubbish.

Mark

Okay, so let's look at the positives now. You know, positive is, well, today. That's a huge positive, right? I feel like we're in a position where it it's not seen as this sort of portent of doom to get a diagnosis, is actually seen as neuroaffirming. You know, it's an affirmative thing. And that's that I never thought that I would be there genuinely never thought I'd be there when we heard about Jay's diagnosis back in the day. I'm getting quite emotional now.

Tam

I think if we're reflecting on India's diagnosis today, the appointment, you know, was all quite jovial and we were celebrating her quirks, which is a very different place from when we got Jay's diagnosis, where we were learning about everything, and it was, you know, what I said earlier about all these emotions and nothing changing, but everything changing. I think today, we were very much aware that India is who she is and it's going to be the same whatever the diagnosis outcome was. And we are celebrating her And so we were able to be more relaxed in that appointment and kind of just be honest about what she's like. And she will have struggles.

Mark

Yeah, yeah, yeah, absolutely.

Tam

And I think what what's different is actually with the right to choose. She's been diagnosed relatively quickly before she was in crisis. So we are able it's much more about celebrating her autistic profile and helping her be her authentic self. going forward and hopefully maybe prevent some of the adversity the boys have experienced by finding out slightly later in their school journey. I don't know.

Mark

Yeah. I mean, I guess, you know One thing to celebrate is that you don't have to fill in any fucking forms for the diagnosis journey. I mean, there is going to be other forms. Don't you know, you're not completely off duty, or we're not completely off duty because obviously we're sharing that process now.

Tam

But then also seeing another professional, like seeing him have a little chuckle at some of our stories, it felt like he saw our daughter for like many of the positive things that she brings into our life. And that was just, I've not really seen that before. And actually. I'm going to remember that as a moment.

Mark

Yeah, absolutely. But you are right to point out that this doesn't take away the difficulties that India is going to have. Throughout her schooling, but we're there for her. You know, we got her back, just like we got the boys' backs. And, you know,

Tam

the more we go through this, it's all about us advocating, but teaching them to advocate for themselves and carve out that bit of the world that works for them. And that's kind of. You know, that's my aim, our aim going forward, isn't it, really? That they can advocate for what they need.

Mark

Yeah, and be unashamedly, defiantly neurodifferent.

SECTION INTRO

Neurodiversity champions

Mark

Okay, neurodiversity champions now. Have you got any neurodiversity champions, Tam? This is anybody, kind of organizations or people who are amazing at championing neurodiversity?

Tam

Sometimes you meet individuals who aren't championing a thing, but just get your child without it being explicitly made. They have to get your child. So the one that sort of struck my mind this week was. we went and played mini golf on the seafront. And I'm trying to do a bit more work where if something's not right, the kids will go and try and sort it out for themselves, so sort of facilitating that kind of independence. and Jay's um club had a big plastic rub rubber and it had a massive slash in it and he was saying he couldn't play mini golf with this thing and I was like, Okay, well you go and change it He didn't want to do that but then I walked with him and he he did do it and he sort of went

Nicole

Sorry to trouble you, but there's a my the rubber around my golf club appears to not be be perished.

Tam

The man there didn't bat an eyelid with this slightly strange presentation of the problem, and then just started really slowly looking through all the clubs and noticing that quite a few of them had like cracks and things in and sort of talking out loud and going, Oh, this one's a bit crap, this one oh, this one's a little bit crap, but would this be suit like, and sort of matched his language a little bit and just kind of gave him enough airtime to get a club that would work without kind of indulging it totally that he was trying to find the perfect club. It was just it was a really lovely little moment and nothing was said about knees, but it was just he just dealt with him.

Mark

Do you think he knew though? Do you think he just clocked that there was no emergency applied?

Tam

I mean, he was it otherwise it was very good customer service from the mini golf shack. I think he just he read him, whatever he read, he read him and he read him right, and it was lovely to see.

Mark

Yeah, I love it when that happens. Yeah, lovely stuff.

SECTION INTRO

Tiny epic wins.

Mark

Okay, tiny epic wins now. Loads of tiny epic wins, I think, lately. Have you got any tiny epic w

Tam

Yeah, I mean like With it with India, she's very bad at asking for help. And when she's dysregulated, she sinks deeper and deeper into the mood she's in. we s we struggle with strategies to get her out and she sort of says no to everything is resistant and the school day had been very, very different, the routine had been different for lots of reasons and She was not in a good way when we got home. Um basically she had a bath. And we've suggested this before, but this time I was like, Oh, maybe, maybe you go run a bath and then we can catch up and she said yes and went and it She reset. We call it reset. And she came back. She did it by herself. She's very independent. And then when she'd had her bus, she was reset. And we can continue with the day. So it's just her tech.

Mark

She normally says no, and she says yes for whatever reason. Great.

Tam

So her taking that suggestion.

Mark

No, that's great.

Tam

That's a great thing. And it works.

Mark

I've got a similar one with India, actually, around dysregulation that I've made a list on my phone, on my iPhone. And do you know the little list that you put in your notes and you put check boxes? Well, I've put a list of things when she was really dysregulated. I wrote a list of things that could potentially help get her out of the funk. And it things like have a bath or do some coloring or read a book or be left alone or I don't know. It was an another option as well. And I gave her that list of like all the things that might potentially help and without asking her, I didn't say anything. I just showed her the list. And then she went through it and she te ticked off colouring. So I just set her with some colouring and she went and did it and she got out of it that way. So again, she's learning the strategies that she needs to to help to regulate her. And that's yeah, that's a huge win.

Tam

But but also hats off to you because that's a non that's her communicating nonverbally. And actually she quite often verbal astuteness is the thing that goes when she's just regulated for her be able to tick something. removes one of those pressures. Yeah.

SECTION INTRO

What the flip?

Mark

Okay, we've got some what the flip moments now. These are those moments where uh your neurodivergent children will say something to you that will completely f Flummocks you and leave you sort of not knowing how to respond. This is a real treat because what the flip moments is going to be entirely based on our family at this point. So, have you got any what the flip moments for us?

Tam

Yeah, oh God, yeah. I've got two.

Mark

I've got two that sprung to mind from the last couple of days.

Tam

So the first one involves all of them, and we were having dinner. Sometimes they'll ask questions and then we'll have a conversation based on this question. So Jay asked the question the other day and it was Mummy, hypothetically speaking If you were a cannibal and you had to eat one of your children, which one would it be? And it doesn't end there. Because whilst I'm trying to think of a response. Like the classic when you've got more than one child and you're trying to come up with a response that's not going to create a meltdown in the other one. They then all started pitching. Well, they were the best one to be eaten. They wanted to be chosen. Yes, and then O was like, I eat loads of sugar, I'll taste really sweet.

Mark

And then Jay was like, and then Jay was like, oh, I've got loads of muscle and that's really good for you.

Tam

And then I can't remember in India, did have some. I think India just went, I've got a bed. I don't know what she said. She said something else. But they were arguing about who I which one of them I should eat. And then they wouldn't let me not they wouldn't let me not answer it. And so I had to.

Mark

Who did you choose them?

Tam

I picked Jay because he's the biggest. I would have survived a lot.

Mark

Yeah, go for science.

Tam

That was what I went for. He'll appreciate it.

Mark

Go for science. Okay, any others?

Tam

Yeah, and then no, what is the thing that I saw? You know, you observe something happening, you're like, what the flip? And this is with India and given it as her diagnosis journey, so it's quite funny. So I've got um a plant. She likes animals and plants, so she was looking after one of my plants that was dying. And this is twofold. So she was, you know, taking the dead leaves off, watering all the things you'd expect. The plant's called mozzarella. She's like, I'm going to take she named it. It's a cheese plant, she named it. So she took it to her room. This is stage one of this journey. And then I go in a bit later. The plants got headphones on. Like on And I look at her iPads and her favorite singer is Ed Sheeran, and she's playing Ed Sheeran to this to my plant. And she's like, Everyone knows that plants like to be spoken to, and this is the plant speaker.

Mark

There is actual evidence to that.

Tam

Yeah, and it was just really cute. It was just really cute coming in, and literally the headphones are on the vase. Fine. And then she's like, leave it with me. I'm going to look after mozzarella and I'll bring them back when they're better. Okay. I go back. I go downstairs. I hear a noise. She's coming down the stairs holding your yucca plant that's called Leroy, that is maybe well, it's nearly as big as her. And she brings it down the stairs, puts it on the table. Now she's like, You need to look after Leroy. He's jealous of all the attention Mozzarella is getting and they can't be in the same room together, but you must promise to speak to him, otherwise he'll get cross. So I found myself agreeing to speak to the plants that I don't have any interest in or care about so that she would go care for my plant.

Mark

Oh, and you have to do it as well because you'd be waiting by the door checking. Hashtag not autistic.

Tam

And it was it was it was heartwarming and lovely.

Mark

Lovely. Yeah. I've got some what the flip moments as well. I thought I'd choose one from each of them this week, just because it seems fitting. So I'll do the one from Otto because this was quite a fun one. And we don't get many from Otto typically. At some point I went, You're a smart cookie, dude. And he went, No, I'm not. And, you know, me thinking he's being self-effacing and bit down on himself. I was like, No, you are. You're super good at maths and you know some really great words. And he went, No, I'm not a cookie. And he was really serious about it. So I was like, no, I mean, obviously, didn't mean you're a cookie, but Yeah, so that was quite a fun one. Another one I had was from India where she said, All I know is, I'll never have children. And I went, Why? And she went, I hate the sound of crying and ping pong. It's like, okay, valid. Yeah, that's valid. So that's ruled out any grandchildren we might have there, Tam. And the final one is from Jay, and it's a lovely moment. He went, Is it sexist if I think all men are stupid and all women are stupid? It's like no, no it's not. No. You crack on with hating all of humankind. Okay, so that is the end of this episode of Neuroshambles. Firstly, uh Tam. Thank you so much for being a guest and also for all of the work that you've done getting our kids through the various different rocky pathways of diagnosis.

Tam

Thank you.

Mark

And for sharing this with the world. So appreciate it. Thank you also to the listeners for listening to this and for spreading the good word of Neuroshambles far and wide. I really appreciate it. We are on all of the usual socials. We are on Facebook and Instagram and Threads and also TikTok. If you've got anything that you want to suggest as a topic or you've got any what the Flip moments you want to send in, then please do email me at hello at neuroshambles. com. But apart from that, all that remains for me to say is have a nice life.