Transcript
So here we are, five years on, aren't we, from the first film. Charlie hadn't seen that until we had a look at it last night, but he enjoyed seeing himself eating that big lollipop. And I think he's enjoyed taking part in this film. And he'll be really interested to see the eventual product. And I think he feels really proud that it's had 21,000 views, impressions, whatever that is. And there's a number of really nice, positive comments from other people who found it a useful tool.
He was very eloquent, actually, I thought, in the film five years ago, talking about what it's like to be autistic and his sensory overload challenges and what it's like at school. So when I was looking back, I was quite struck by that. And the biggest difference between now and then, he's still autistic. He won't ever not be autistic, but he has learnt to cope with it much better.
So all of those sensory overload challenges, it feels like spiders walking up and down me, I can hear things, I can feel things, that's still absolutely the case, but he's much, much better at handling it. So in some ways he's just as eloquent now as he was then, or he demonstrated some really good self-awareness. What he's developed in that time period is a much better knowledge of how to cope with what happens when he gets high anxiety level, high sensory levels, when he's getting towards having a meltdown.
Five years ago, we were having meltdowns, bad behaviour very, very regularly. Now it virtually never happens, which is just the most fantastic progress.
One of the biggest things is getting diagnosed quickly, because otherwise you don't know why you're feeling that way. So that's a big thing that they should be doing.
Some of it is actually about maturity and just being older, bigger, having more body mass. I don't have to worry about Charlie's meal times, has he eaten, is he misbehaving because of that. He's just got more stuff going on, more physical matter. And so we don't get those peaks and troughs in blood sugar levels that we would have done. His school, in particular, have worked a lot with him on self-regulation and how to manage yourselves about putting your anger in a box, in particular taking yourself away from the situation.
And I think that's probably his biggest tool, is just physically moving away from a difficult situation so that he can then calm down, self-regulate, and then bring himself back. One of the biggest issues he'll have, and he still has, is not understanding some of the subtle social cues, body language, eye contact, voice inflexion, all of those sorts of things. He doesn't really get that.
He's a very straight line, black and white thinker. He can therefore misconstrue some of the conversations he has, especially with peers. That can lead to him thinking he's being teased or being bullied, and then he can get quite angry quite quickly. And I think the single biggest thing is that he's able to say, I'm getting angry and I'm going to go. I'm going to walk away from that situation. When he then reflects back on those situations where things have gone wrong, it's still from a very self-centred point of view.
Well, how do you expect me to think, if x is doing y with my LEGO or something like that. And he forgets literally-- he does genuinely, I think, forget all of the things that he did that weren't particularly positive human interactions to get to that place where the other person reacted. So that's his learning now. That's going to be the next stage, is how to be with people and interact with them in a way that is more positive.
So there was a time in COVID where we were in the garden and he was bouncing on the trampoline. He was very angry, very annoyed. I said, what's up? Why are you so angry? And he said, well, there's nothing to do. This flipping pandemic, I can't go to school. I can't go to the swimming pool, I can't go to cinema, I can't see anyone.
There's nothing to do. And I said, well, we've got your bike, and you've refused to learn to ride a bike. You didn't want to. Anyway, 20 minutes later, he came back to me and he said, all right, then, I will learn to ride my bike. And of course, he'd fallen off a couple of times the year before. This time he got on it straight away and, zoom, he was off. So we ended up doing about an 8-mile cycle ride over a couple of hours.
And then about a year and a half ago, he started doing martial arts. And I wouldn't say that's a panacea for all autistic children, but it's been really good for Charlie. And I would, when I meet other parents, say it might be something to think about. It's really disciplined. So they're absolutely in a square box of rules, and you don't go outside that box.
So that makes autistic people feel really safe. Those are the rules. And then to progress, you're told what you need to do, both in terms of learning philosophies and morals and also the physical activity. And he loves getting a belt, and he probably gets a new belt every three months or so. So he's really progressing. He gets a certificate each time.
He's wanting to go to the gym. He's wanting to go for long bike rides. He uses dumbbells most evenings. He wants to actually develop himself physically because he has an aspiration to be really, really good at that sport, which is lovely to see. I mean, it's still hard to know what he'll excel at, but he is starting to achieve in more things. Snow sports, he really enjoys skating, skiing.
So we're starting to build a little bit more of a repertoire of achievement. He's at a special school at the moment and he's probably one of the more gifted academic children there.
Well, I won an award, actually, for English. I was licenced by an author called Holly Smale, if you ever heard of her, which I was pretty happy with. So that's one of the reasons, and I'm also just generally good at the subject. I wrote quite a lot in my free time. I did a lot of creative writing.
And as he's learnt to manage his behaviour better, we feel as though he can probably access a school which is stronger on the academic front and where he will be stretched more and learn more and be working with peers that he can learn from.
Yeah, well, because I'm in a special school, like I was saying, there's a lot of children who are quite angry all the time, which is a problem with the school, but that's fine.
The next step would be back into a mainstream school with some sort of a support wraparound care programme that we're not quite sure what it is. If he carries on his current trajectory, that might only need to be for one academic year. And then he could actually-- potentially he could sit in classes with other children and get on with his learning, which, is quite exciting. He's engaged. He's interested.
I think small class sizes are really important. Culture in the school about not bullying and not teasing is incredibly important. Other parents who might be watching this, I take my hat off to you because it's hard work for us all. Reach out to others for help. I've got lots and lots of different various parent support networks, WhatsApp groups and others. I was talking to somebody the other day who's having a really tough time working with the council to get a proper diagnosis of their son, who's almost certainly autistic.
And the one thing I said to her that I'll share on this film as well, is I wish somebody had said to me, look after your marital relationship because 80% of marriages with autistic children break down. There's only 20% that survive. So it's a much higher divorce rate amongst parents of autistic children. If I was the UK government, if there's one thing they could do, it's actually as soon as somebody gets a diagnosis in their family, try and arrange some sort of advice, counselling, whatever it might be, marriage guidance for the parents because it puts a huge strain on your relationship.
Then you need to think about what your expectations are for children. And I remember one mum saying to me, we can't be a normal family, but we can still be a happy family. We can be a family that does stuff, but we probably won't do the sorts of things that I did when I was a kid. And we might end up with one child going down that road and another child going down that road.
But parents of neurodiverse children probably won't end up with a well-rounded individual who understands a bit of music and a bit of science, and a bit of English and a foreign language. You're more likely to get somebody who specialises in a couple of areas and might end up being absolutely brilliant in those areas. All the inventors and scientists and engineers and people who have original thoughts are not people with neurotypical brains, which is one of the reasons why we need to think about education in a much more planful way.
That's something that's very important. You have to find out what your happiness is and then just do that.
One top tip is have a think about what your aspirations are as a family unit and as a child. Don't put too much pressure on yourselves, and don't expect that a neurodiverse child is going to turn into a neurotypical child, because they won't. [MUSIC PLAYING]