A (2:35)

That's such a good comparison, dude. Because it's literally like I was playing Dying Light the other day and I'm on the final boss and I'm like, okay, he's dead. And then suddenly he's like, no, I'm not. And he sort of injected himself venom or something and then Suddenly he's like 10 million times the size and I've got. Oh, okay, that's another three hour boss fight. Yeah, but yeah, that is literally how it seems. So, do you want to tell us about the documentary in case people haven't heard about it?

B (3:03)

Let's give a rundown. So, UK viewers, I'm sure many of you are aware of the Panorama series, which is on the BBC. It highlights news stories that are either affecting society en masse or going unseen or unheard, which I'm sure many people will agree that this is certainly going. Seen and unheard. So this is Kelly bright, she's an EastEnders actor and she. In this documentary, which is Autism, Schools and Families on the Edge meets parents who say they're exhausted by the fight to get the right education for their autistic children. She follows three families who are applying to their Councils for Education, Health and Care plan, which is the EHCP you were just mentioning. It's a crucial document which says where a. Children. Where. Where a. Children. A child goes to school and what extra supports they should get. During this, Kelly learns that a crisis in funding for children with special education needs and disabilities is contributing to financial trouble for many local authorities. And the government is promising reform, but not that kind of reform. Drawing on her own experience as a mother to an autistic son, Kelly helps the children explain, in their own words why they find school so hard and finds out what they and their parents think would help them to cope better and thrive.

A (4:14)

It was. It was emotional, man.

B (4:17)

Oh, dude. I was still. I'm still feeling it, I'll be honest. I've only just finished watching it and I'm still a bit jittery, if I'm totally honest.

A (4:24)

It was nothing I haven't experienced before as far as, like, the outrage, not the documentary. The documentary's brilliantly done, by the way. Like, it's so neurofirming.

B (4:34)

Yeah, kudos to them.

A (4:36)

The language was fantastic, the people were fantastic, the kids were fantastic. It was just. It was so good. I do have a few issues with it, personally. There's like a few things here and there, but. But I actually am not going to talk about them because I don't really think they're relevant to the documentary. Overall, I'm very, very picky. So I'm obviously going to have a few things here and there, but, you know, I think that we need more documentaries like this and what I would have liked to have seen. Okay, so I'll give you one of my little problems with this. I would have liked to have seen a series, not a one off. This needed a series to show more parents and maybe more of an extreme, because I. I did Feel this was the fluffy version. There's that. Here's me. I won't talk about it. And then I'm talking about.

B (5:42)

I'm gonna talk about it anyway.

A (5:43)

Oh, God damn my brain. It was fluffy. It was a little bit fluffy because I know people who have had way worse experiences with the councils, with the schools, with their kids. I don't know if it's appropriate to put this on tv, but self hurting happens. I did it. You did it?

B (6:10)

Yep, I did.

A (6:11)

A lot of kids are doing it. It's and it. And it, it's it that I think is something that needs to be addressed because school causes that. In a lot of cases school caused me to self harm. So I, I think that I would like more documentaries like this that, that show the more extreme side of what this can cause. But this in itself was, was a really, really good entry level.

B (6:40)

I was, I'm glad you've said entry level. It definitely feels like it. Don't get me wrong. I agree. I think there's a lot more that they could have shown. I feel like in certain areas this documentary played it safe but it also is a conversation starter. It's raising awareness for many people that, that don't understand it. And a lot of the time you put self harm warning labels or suicide labels on the front of documentaries, people will not watch them. So there has to be a sort of give and take to get people to come to the table to have this conversation with us. So I understand. But there is also a lot that I feel like they sort of skirted over.

A (7:20)

Yeah. But I do think that they're mentioning the demand avoidant profile within the program was fantastic.

B (7:31)

Absolutely.

A (7:33)

Seeing the little girl in that environment and what her mum has to do and what that poor little girl has to go through and you know, I just, I do think that it really did open a few eyes. I can imagine people who don't experience this or don't understand send kids watching this documentary and just thinking just smack that kid or just disappear. I don't know what people think now.

B (8:02)

Tell them to get a grip and just send them to.

A (8:04)

Yeah, yeah, just, just chuck a. Be like, like, you know, this moddy coddling. Now I, I am a big advocator against Molly coddling or moddy coddling children to a degree that it does not do them good. It does them more harm than good for the future because you know the world's not going to give you lemons. The world's more likely to throw, squeeze.

B (8:30)

Them in your eye.

A (8:31)

And just throw lemons in your face rather than give them to you.

B (8:34)

Yeah.

A (8:34)

And you do have to prepare kids for that.

B (8:37)

But.

A (8:39)

There'S plenty of time to do that. And I think when a kid is really, really young and they're just struggling just to go to primary school, that isn't the time to be like, right, I'm going to teach you lessons of life. Now. You've got a long time to teach your kids life lessons. And I think just getting them to school, just getting them around other people and I think that you do have to put boundaries in place and you do have to put your foot down with some things. But this is the thing, is that you can't just be like, this is how you deal with a child because every kid is completely different. You have to be so careful that you don't damage a child because the idea of just like, oh, just discipline them, which, I'll be honest, that's what I was taught. So I kind of did that with my kids. So I'll just discipline them. And I definitely did that with my kids. And it was wrong. That's why I can speak about this, because I did it and it was, I shouldn't have done it, it was wrong. Now I do it a lot better. It is a balancing act. But it's so, it's really hard and it shows this in the documentary, how hard it is with these kids and what they have to go through. So you already, and you're more likely you're going to be a neurodivergent parent, let's be honest, even if you don't know you are genetics, you are, or your partner is. So you, you're dealing with your own neurodivergence and then you're dealing with your kids neurodivergence and then the one thing that you want is the school to be supportive or the council to be supportive, or most of all the government that you voted for to be supportive.

B (10:24)

That you pay, that you pay for.

A (10:26)

With the taxes that you literally pay for with your taxes that they take a nice 25% or 27%.

B (10:32)

Don't they spend it well?

A (10:33)

Oh, no, they don't.

B (10:36)

They do not.

A (10:36)

No, they do not. But let's go through a, a few things that were brought up in this documentary that, that even I was like.

B (10:45)

Well, it's been, it's credibly eye opening for me because I am not a parent, but I have been a child that has been like so much of what happened in this documentary from all three of the children. Even though my situations are different, there was so much from each family that resonated with me and made me reflect on my own experiences as a kid. And it also gave me a bit of an insight into how my parents might have felt as well. But yeah, let's get into the like the struggles of like getting something that every sense kids. Right should be. The bit that absolutely melted my brain dude is the waiting time. The waiting time that people have where it was like oh yeah, it could be, you know, eight to something weeks. And then one person was saying it took eight months. Eight months in the life of a child is an unbelievable amount of time.

A (11:40)

I mean that, that's even if they get a diagnosis which, which most of the time nowadays you now, now we've got right to choose which obviously is, is something that we sponsor right to choose. But like me and my family, you might end up having to go private. So it was a brilliant phrase that one's. One of the dads in this said is that the government are putting roadblocks in place which, which is ruining kids futures. You know, like, like it's, it's, it's just, it's almost like where's, where's the quote? Yeah, the quote is well a paraphrase. It seems to be a deliberate policy of fatigue because so many parents will give up and they know it. But it should never be about money. It should be about the children. I added that last bit that was in relation to the fact that the initial stage of the HCP, around 25% of VHCP is turned down before they even reach the assessment stage. So 25% are turned down without even meeting the kid, which, which is. I can't. If a kid is. Or the kid has a diagnosis and which, which I, I also think is, is like that's gatekeeping as well. The kid has a diagnosis. They're diagnosed autistic, so they're diagnosed. They, they have. According to the medical model of autism, they have a disability, whether it's adhd. By the way, dyslexia wasn't even mentioned in this. And I'm like why can't dyslexic kids own adp? Just saying. Because dyslexia is like why, why, why? I mean I don't know if they do or not. Maybe I need to do some more research. But it wasn't mentioned in the documentary. And I'm like okay, but her. Kelly Bright's kid has adhd, is autistic and, and is also dyslexic. But yeah, so around 25 AHPs are turned down without even meeting the kid. And like, so a stranger will literally judge whether a child needs additional needs without him meeting the kid. And one of the kids literally had that happen. It was turned down for him. And when, when I look at like the type of autistic person he is, I would say just from evaluating, from watching the documentary, that that kid needs a special school, that that kid is not suited for mainstream school. No, he was badly bullied, but I mean, we're all badly bullied. But that kid was badly bullied. I mean, he carries a cuddly toy around with him. Now I carry a cuddly toy around with me, but I can defend myself. And if someone says anything, I tell them to fuck off. But that kid is not me.

B (14:32)

No, he's not.

A (14:32)

No, that kid cannot defend himself. And that kid should be given the same educational rights as any other kid to breach his potential. Yeah, but he was. Oh, it was. I feel like I'll be just doing spoiler, but like, just. So turn this off now if you haven't watched it. But not only was he denied it before an assessment, he went and had an assessment and. And if I'm remembering correctly, they turned around and said, oh, no, he can go to. To like mainstream. And they're like, well, no. So they keep trying to send these kids to mainstream when. When they clearly are not going to be good in mainstream.

B (15:16)

Yeah, because schools don't get fund and if kids don't turn up, it's all about the dollar. This is the bit that's messing with my head. And the bit that messed with my head even more, dude, is the, the insurmountable of amount of paperwork that neurodivergence have to fill in providing yet another hurdle that they may struggle with. I don't like doing paperwork. I did my PIP assessment and the whole time I was doing this, it was like, oh, you need help climbing a mountain? Well, get past base one, rest a bit, get past base two and then you can start climbing the mountain when you're already 2,000ft up. It's like, wow, just tell me that you don't want me to have this. But according to the Ministry Of justice, in 2024, last year, 99% of EHCP cases that go to tribunal are won by the family in England.

A (16:03)

Yeah, that's what that guy was talking about. That sort of deliberate hurdle that's put in place by the government.

B (16:09)

If 99% of people, if it goes to a tribunal, 99% is essentially you will get what you deserve.

A (16:17)

Yeah, they should just got it in the first place.

B (16:19)

But then that kid might have been out of school for eight months by that time.

A (16:23)

Plus that's all that time that the parent time and energy that the parents have to put into to getting their kid the help that they clearly deserve because 99% of them win the cases. So the kid definitely deserved it in the first place. And all that energy was put into that which they could have, they could have put that energy into helping their kid even more.

B (16:43)

Your neurodivergent parents as well, the anguish, the rejection sensitivity that you're going to go through, the just the continuous worry that you must be living with. You aren't creating mental health issues just for the child. You're creating a life of hurdles for these parents as well that are just trying to get on with their everyday lives and also trying to protect their children from a system that is not fit to serve them. And I recognize this in my own parents struggles of when I had to come out of school and nobody offered even. There was like no EHCP or anything or send even picked up on the fact that I was neurodivergent. I was just disruptive and didn't want to learn. And my parents took me out of school because they were like, you ain't, you ain't staying there. It wasn't, you know, we weren't told to move, we moved. We made that decision ourselves. And it was such a traumatic time for me and my family. I carry a lot of issues from that time in my life when I was six, seven years old. So much of my rejection, sensitivity, dysphoria comes from that time. So much of how I view myself and how I viewed myself for so much of my life came from a time where I thought I can't even fit in the school system. How the hell am I going to fit into the real world? And it was, it was such a battle. I still battle those feelings now of trying to feel like I fit in or I'm worthy to be here because quite frankly enough school told me I wasn't good enough to be there.

A (18:14)

Yeah, I'm fortunately in the place where I'm just like, not only am I good enough to be here, but people are fortunate enough that I'm here. Like I feel like that I feel like I'm doing good, that no one can tell me that I'm not worth it, that I'm not a good enough person.

B (18:36)

I'm getting there. I am getting there.

A (18:38)

I love you. I love you so much. Well, you're coming down on on Friday.

B (18:47)

Where? Steady on.

A (18:48)

Well, technically today, me and Scotty are going to be together again today.

B (18:54)

Yeah. We'll be holding hands as you're listening to this.

A (18:56)

I'll see you at 6pm Baby.

B (18:58)

But anyway, let's get back to the show.

A (19:00)

Well, yeah, that's a different type of show.

B (19:01)

Maybe. Well, if you want to, if you want to see the extra one. But what I will say is that behind the scenes, this behind closed doors. But there was a part of this documentary that was very quite. It hit home for you, didn't it? Because it's your local council that they spoke to.

A (19:17)

Yeah. So one of the few councils who actually agreed to talk, which is terrible by the way, because like they, they actually got quotes from other councils and it sounded like chat. GBT wrote it like this council really appreciates every parent and tries their best to. For every kid.

B (19:39)

Thank you for reaching out. Insert names.

A (19:42)

Yeah, okay. Okay. AI, thanks for writing that. But yeah. So West Sussex County Council actually spoke to Kelly Bright in the interview and wow, that kind of blew my mind because we're in a lot of debt. Sussex, Sussex is in trouble. So. Yeah. So Westwood County Council said the, the state of the system is broken. Like that is the quote from the lady from my council is that the system is broken.

B (20:16)

How's it going, council? It's not good.

A (20:18)

No, it's broken. Yeah. The, the, the, the send, the, the need for send in schools, the hcps and, and additional needs is. It's broken. Right. And the, the demand is now outstripped the funding. So the word, the worst thing is that, and I don't say the worst thing. The worst thing when the funding is concerned because this is, let's be honest, this is all the government conservatives started this crap. Right.

B (20:48)

It doesn't matter who's in.

A (20:49)

And then right wing labor, because we're not going to call them labor because they're right wing labor. They're not left wing labor anymore. Right wing labor have just carried on where the conservatives have. I don't even want to. One day we're going to talk about like where we go from here, but I can't even fathom that because everything just seems to be falling apart. But I'm going to concentrate on autism at the moment and I'm going to concentrate on ADHD and I'm going to be here for neurodivergence. And let's just hope it all works out because, man, we need it. So I digress. So the demand has outstripped the funding and it's 3423 kids needed EHCP in West Sussex in 2015. And the lady said that today the figure is in excess of 10,000. So 10 years later, it's more than doubled. And that's just in this area. But overall, according to the documentary, the number of children with the HCPS has increased by 80% in the last six years, according to the Department of Education. Because parents and teachers in health care. This is what I've added this. Parents and teachers in health care professionals have just become better at recognizing special.

B (21:56)

Needs, which is true. More cars on the road, more car accidents.

A (22:00)

Yeah, yeah. I mean, it's, it's not paracetamol and.

B (22:04)

Oh, yeah, and I took three today just for this interview.

A (22:08)

Well, there you go. But, yeah, no, it's, it's, it's, it's not paracetamol. It's, it's just better understanding of what special needs are. Because if at school when I was a kid, I should have had. And the hcp, like, definitely, like, that would have been massively helpful for me. But no, I mean, it wasn't even considered. Even though I was, I was diagnosed hyperactive, which is adhd. But back in my day, Burger Morti, I was just hyperactive. I ate too much sugar. It's my own fault.

B (22:36)

Pesky Blue Smarties.

A (22:37)

Yeah, the blue Smarties. It's basically all my fault, as literally my birth mother would tell me it was your or fault. I'm like, okay, then you ate one.

B (22:48)

Refresher and you were just, you know, failed school. Crikey.

A (22:51)

Oh, yes. But, yeah, so the amount of money schools are expected to spend on each send pupil hasn't gone up since 2013. So that's even before the 2015 where it's already 3000 something. But, you know, costs have soared by 40% in the last 12 years. And that was according to the, the NAS, who was also on the program.

B (23:16)

Let's all boo together. Boo.

A (23:18)

Well, you know, I mean, what they said was good, so I suppose that's one.

B (23:21)

Yeah. The guy that spoke was.

A (23:23)

Yeah, he was fine. I just. Yeah, he was from there. We're not fans of National Autistic Society on this program. I don't know if you know that. And. Yeah, and if you want to know why, just look into them, do some research. They are. You'll find out. I don't like them. But yeah, they have their uses within this documentary. What is going on is there is A lot more awareness. There is a lot more kids who qualify for send because it's just better now. There's not more send kids, there's just more kids that are getting help potentially. But the government still are being like, nah, nah, you ain't getting no more money. And I'm like, wow, so this government really care about the future of our children? Nope, nope, nope.

B (24:23)

This is the thing that so frustrates me, dude. Like, West Sussex County Council say the deficit of funding due to send pupils is £123.2 million, which is supposed to be used for local services such as road repair. If only they would repair the roads.

A (24:39)

Yeah, that. That bit of the documentary made me go.

B (24:43)

Because then that's loads of people gonna go, what about the potholes? Yeah, put the kids in the potholes.

A (24:50)

Yeah. I mean, but at the end of the day, if you're the sort of person that's literally thinking, oh, well, maybe we should just start chuck these. Maybe we should make piles with these children. It's again, it's the same as blaming immigrants for, like, every single issue. When it's not the immigrants, it's the government's fault. And the government just blamed the immigrants. And West Sussex county account weren't blaming send. They absolutely weren't doing that. They were just making the point because they were blaming the government and saying, no, the government have put us in so much debt, they should be giving us this money because this money should be spent on send kids and all these other things for local services. That's what the money. Because the fact is that we pay county council tax. Right. Council tax, and that money is now being used for send kids is what my understanding of this is. Because they're picking up the bill, because the government aren't picking up the bill. The government are only giving them a certain amount of money, which is, like I said, 2013 money. It's not enough. Not enough money.

B (25:53)

Remember when beers were like three pounds?

A (25:55)

Yeah. Literally. And even. I thought. I thought that was expensive.

B (25:57)

Three pound fifty. Three fifty.

A (26:01)

I thought that that's.

B (26:02)

If you get that in change surrey.

A (26:04)

Prices, was three pound fifty for a beer when I worked at a pub 20 years ago. More so old. It's. There's the council picking it up. So essentially we're. We're paying for the send kids, which is not right. And it's not not right that I'm paying. It's not not right that. That the council's paying. It's not right that the government aren't paying because that's that's what they should be doing. So Kelly did have an interview with George Gold who is the educational minister for SEND reforms and she told Bright that the reforms will not take support away from families and that there will always be a legal right to additional support for young people with sending. So she's a chat GBT bot because she came out with the same sort of garbage that politicians usually come out with it. She's just spin see this. I would have, I would have gone hard like Kelly Butt was too nice. Kelly Butt was too nice. But the thing is is that if you go too hard you're not gonna get. I don't blame.

B (27:16)

It's also a BBC documentary so they're not going to apply certain pressures because of impartiality and all that bollocks.

A (27:22)

Plus they, they, they love right wing politics apparently now. But isn't it crazy talking about labor is right wing politics? But it is and that that's where we are in the world. But yeah, so the, the right wing government who try, who tried to stop pip, who tried to destroy more monies.

B (27:40)

For weapons to secure the future of this country that won't have any children left in it.

A (27:45)

So yeah, the right wing government that to destroy, tried to destroy the lives of many, many disabled people is now hindering the lives of many, many young disabled people and not allowing them to have an equal future. And yeah, so there are government reforms in the works and like it made me think but does that mean it's going to get worse? Because if the government are trying to take away your pipe, does that, does that mean this is going to get worse? And that, that's why I think this documentary is so important because you know the government, they just need to do better. They, they really, really do. But then I could say that about everything and it's never, it's never going to. Oh, I don't know. Honestly, I do despair sometimes. But let's hope something happens with this that's up something.

B (28:42)

It's a conversation starter and I know for a fact that there will be a lot of parents that will watch this documentary and see themselves, but there will also be a lot of parents of this documentary who will see their neighbors and they will see other kids in schools and it will give them a bit of an awareness. It may also give them a bit of empathy. You know, we've heard many stories on this show and especially on your page of parents of neurotypical kids going why do they get special treatment? Watch this documentary and you'll See why? It's not special treatment, it's accommodation. And no kid should be out of school for eight months. No kid should be out of school for nearly a year, struggle with severe burnout and then be told after this entire process, the best school for you is the one that your child can't stand. There needs to be serious change. And this is a conversation starter.

A (29:33)

Yeah, I mean, like I said, like with, with, with my kids, it. We never even got any of this help. Even though, you know, the, the school knew about my kids being neurodivergent because they didn't have an official diagnosis, which we were. We were on a list and then I eventually went sod that. I'll just pay for it because we had to. Because that's what you do for your kids. You get. You give up the holiday that we did actually have planned that year. We gave up that holiday because you do it for your kids. And when I see the sacrifices these parents were making in the documentary and knowing the sacrifices that the parents make, it blows my mind. So I want to extend this a little bit because I had a few things I wanted to add to this from a post that I put out, basically just asking for people's experiences. I'll just read a couple of these. So this lady says about the documentary, we are in the midst of trying to choose a school For Key Stage 2 at the moment, not enough locally and seems impossible. I've emailed local MP and no response. This will be so relatable, I'm sure. I'm pleased. People are trying to raise awareness of the struggles we face. And that was just a random comment. There is 436 comments on this post. All people, all families. 436 families just on this one post that are going through this that are just like, help me. I watched this program and it was enlightening and show struggles. Parents have. My daughter struggles with my grandson every day, but who listens? I mean, that sums it up. Like that's the problem is that there's such a disconnect and a lot of the times schools are nefarious. There are nefarious schools, but a lot of the time schools are trying their best, the money's just not there. Some councils are run by numpties. That's just the way the life is. Especially if they're conservatives. But doesn't. It doesn't help parents when you're like, well, you can't blame them, you can't blame them, you can't blame them. It's like, well, they're not out to blame someone. They just. They just want help. They just want help. This last comment, what annoys me is that mainstream schools are getting extra funding for send kids and doing nothing with it. I asked for years for a TA for my kids. Never got one. Only excuses. I can't verify that. I'm just saying that's what this lady said. That sounds like a whole other problem, which is why I said I think this subject, this, it needs to be delved in further. There needs to be more documentaries. There needs to be a series about this. Because I. This isn't something you can skirt over. This isn't something that. It's not clickbait. It's. This is people's lives. This is something that we need to revisit, I think, certainly. But, you know, we do our best.

B (33:09)

All we can do is sort of, you know, continue to keep raising awareness, keep having these sorts of conversations and know that even though we can't reach through a headphone or a radio and, and help, you know, that we care. Know that we're listening and know that you're not alone.

A (33:26)

Definitely.

B (33:27)

All right. Wonderful people. Well, yeah, what a hot topic. And unfortunately, this one isn't going to go away anytime soon, so you will hear us talk about it more. But if you're listening to this, you know, send comments on Jordan's page, have conversations with other parents. Don't, don't try and feel alone with this. And if you can, as the best as you possibly can, just try and take care of yourself and, and be safe out there and just keep loving your kids because that's all we can do.

A (33:54)

Indeed. All right, see you later.

B (33:59)

Not. Yes. And we don't know how to leave conversations, so we'll leave it there.

A (34:02)

Bye, everybody, nightly.

B (34:03)

Bye. Thanks for tuning in to the neurodivergent Experience. We hope today's episode sparks something for you. Whether it's a new idea, a bit of validation, or just a moment of connection, remember, new episodes are every week, so be sure to join us for the next one for more conversations and insights into the Neurodivergent Experience. If you've enjoyed this podcast, help us grow. You can do that by rating and reviewing this show. Your support makes a huge difference in helping us reach more people who could benefit from these conversations. You can connect with us on social media, find us on Instagram, Facebook, Tick tock, just search for the neurodivergent experience. Thank you again for listening and until next time, take care of yourself. You're not. Not alone in this journey.

C (35:06)

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