We went on holiday, you know the whole situation was incredibly stressful for the whole family,
and so we said well let's go on one of those holidays that you never think you're gonna go on,
an all-inclusive package holiday to Fuerteventura
and we went off and stayed in a hotel
and Charlie couldn't cope with the all-inclusive package holiday
because there's chips and the buffet and there's tomato ketchup and there are lollipops in the bar
and there are other children who've got toys next to the pool and he would just go along and take their toys
and we were telling him off all the time, every 10 minutes.
No you can't have a 15th, you know, flipping lollipop or ice cream
and no you've got to eat something other than chips and tomato ketchup for lunch.
And he would take himself up to our bedroom he would sit in the bath,
without any water in it, and he would just sit in the bath in his clothes like this,
rocking himself backwards and forwards,
like that for about half an hour, trying to calm down,
and when you have a boy doing that, you realise you've got something else,
other than someone who's misbehaving. There's something else completely different.
So that was the point at which we thought,
yeah we need to get someone professional to come and have a look at this.
"So good on that Charlie!".
So the school he was at recommended an educational psychologist
and she came and viewed Charlie in the classroom and she didn't use the term Autistic,
she actually used something else.
She suggested it might be something called PDA which is Pathological Demand Avoidance,
which is sort of, you know, people talk about a spectrum.
It's not really a spectrum, it's a cloud.
It's a sort of 400 dimensional cloud,
and PDA is sort of one of the bits on the edge of the cloud.
Anyway Charlie isn't PDA,
but that was the first indication that it could be some form of Autism and so that was the first point.
"Well it's hard, umm to have life when you have Autism.
umm unlike others who don't,
and it can make you get angry in some situations and it makes you stay awake umm,
way longer at nights and you sometimes feel things that aren't there,
like spiders crawling up you,
umm but they're not there".
So life's much harder for him than it is for other people
and that's one of the things that we're always reminding ourselves.
He's been born with greater challenges and he's going to have that throughout life,
you know it's a condition, it's a genetic condition that he will have for the rest of his life,
and, hopefully, he'll learn coping strategies and he'll understand how to manage himself,
but it's always going to be there.
For him, he in the old days would be termed Asperger's,
you know, high-functioning autism.
He's got a good brain, he's good at maths,
he's not one of the idiot savants,
the Rain Man sort of people with that level of skills,
but he's definitely got a brain of a mechanic,
an engineer, a mathematician or a physicist, something like that.
Whether he will be able to access that or not, who knows.
And for Charlie anything that's new, is difficult,
anything that's a change, is difficult,
anything that has lots of sensory input, in particular noise
but also light, new people and often touch, is really difficult for him.
And that raises his arousal levels, that raises his anxiety levels
and then that manifests in bad behaviour.
So, what a lot of people see a lot of the time, is a very naughty boy,
somebody who's misbehaving.
Actually, that's him not being able to cope with the situation he's in.
Sometimes, of course,
he is just a naughty boy and one of the things we have to try and recognise is,
when's he being a naughty boy and when's he being,
you know, someone who's struggling to cope in the environment he's in at that moment.
"Even the faintest sound I can sometimes hear,
umm, and yeah my sense of smell is better than other people.
I don't really know how to describe that.
Umm but my sense of feeling is probably my strongest sense.
Or my sight.
Umm and yet, even if umm, just something touches my hair, my head can feel it,
and umm yeah that's how I feel and how my senses are better than normal people".
So managing Charlie is a challenge.
When we embarked on this journey,
my wife and I sat down and we decided what we thought was going to be most important,
and that was for him to grow up confident,
to be mentally healthy and to play some role in society .
We know, categorically, a hundred percent,
that Charlie is not going to have a massive career in human resources, you know.
Emotional intelligence is not his long suit, by any stretch.
He's not going to be an executive coach.
You know, there are some roles that we can rule out
and you know, honestly, the way his academic progress is going,
it's unlikely that he's going to be fulfilling many of those traditional kind of roles.
He might be, he might turn out to be a brilliant mathematician,
who knows or something along those lines
but it's much more likely that he'll learn a trade.
You know he might be a tree surgeon, or a bricky, or a plumber or something like that.
And I would be, you know, given where we're at right now,
if he turns out to have a trade like that,
I would be delighted. That would feel like a very good kind of outcome.
In daily life the most important thing for him is to know what's coming.
To have advanced warning, to have a routine, to stick to the routine,
to have very, very clear rules and stick to those rules as well.
So if other people are looking after Charlie, we will always talk to them about,
well it's this time that we have supper.
It's this time that we start doing the bedtime routine.
It's this time that we read a story.
When we wake up this is what we do in this order.
The weekends are often different and if they're just free flow,
you know some families see who knocks on the door,
it'd be great fun, people will pop in and out.
That's very bad for us.
That doesn't really work, so we'll always plan the weekends
and he will know in advance what's happening each day
and if he doesn't, things can go a bit wrong.
So that sort of predictability,
pre-planning and routine.
And sometimes looking after Charlie's like a game of chess,
you have to think three moves ahead.
What are we going to be doing at lunchtime?
What we're going to be doing in the afternoon?
And warning him and talking to him about it and,
you know, making sure that he knows what's coming and that what's coming is gonna be okay for him.
"Hello Charlie"
An early diagnosis, I mean for us, it was incredibly important
because his challenges manifested when he was young
and it was very, very necessary.
What we know about Autistic people is that boys tend to get diagnosed earlier than girls
and there are probably good genetic reasons why there are more Autistic boys than girls.
But diagnosis in girls is probably,
one reason for it is that girls are better at masking their emotions and understanding how to,
sort of, look like other people, even if you don't feel like other people inside.
And so there are many more girls who are diagnosed in teenage years than early years,
which is often a relief for those families.
I think for us an early diagnosis was incredibly important / invaluable
because we had a child who couldn't cope.
I think one of the things about Autism and Autistic children is every single one is different
and there is that phrase that people who work with autistic children use,
if you've met an autistic child,
that's all you've done.
You've met one Autistic child.
You can't really apply the learnings and the lessons from that child necessarily to another one.
It's not like having flu or a cold or breaking a leg.
You know if you've broken a leg, you've broken a leg. We know what to do about it.
You've got one leg, you've got the same bones and the blood vessels are all the same in all people.
That's not the case with Autistic children,
every single Autistic persons manifestation is different to every other single person.
So for us, we couldn't have survived without an early diagnosis of where he was at.
For other people that wouldn't necessarily be the case.
So for Charlie, even recognising emotions is very hard and managing them is even harder.
Now that he's 9, he is becoming more self-aware,
and he talks about his emotions and feelings a little bit more than he has done in the past.
But, getting him to talk about how he feels is very, very, very hard,
and it is one of the things that raises his anxiety levels.
So he's like a bloke, but like the worst bloke you know, you know,
why don't you just talk about your feelings?
well I'm a bloke I don't want to talk about my feelings
and an Autistic, young boy who doesn't understand emotions,
getting them to talk about those emotions
and trying to explain how they're feeling is something that they find and he finds very, very hard.
I find the best place to talk to him is in the car because it's a safe environment,
it's a closed environment.
I'm not looking at him. I'm not making eye contact.
I'm driving, he's sitting there.
So we often have some of our best conversations there,
and he often has his best conversations with his mum when they're lying in bed together,
in the morning or the evening, reading a story,
and then she'll talk to him about his day.
And the same thing, you don't have to make eye contact in there,
and it's a very safe, enclosed environment.
"Lots of people wish they were Autistic but if they, but if they were,
then they would wish they weren't".
He's still very young, you know, he's only 9.
In terms of feeling anxious,
or feeling depressed,
it's very early for us to start talking about things in those terms.
He definitely has low self-esteem.
He won't talk about that,
and we don't use that term but,
you know, he's got a low opinion of his place in the world and his abilities.
You know, which is not entirely illogical.
He's not, you know, he's not doing well from an academic point of view,
or from a sporting point of view.
You know, there's very few things he excels at.
I wouldn't even say he's got low mood necessarily, he's like a lot of other children.
He's up and down, you know, it's a dreadful fight and then five minutes later it's not.
Anxiety is definitely something that's almost always present for,
I think any Autistic person who's got sensory issues
and challenges with sensory overload.
Anxiety is always close to the surface.
So for, you know, for us the resting state is 2 out of 10. For him it's 3.
He gets to 4 or 5 very, very quickly and then he can get to 10 very, very quickly as well
and then that manifests itself in behaviour.
So Charlie's relationships with other children are very shallow.
He struggles to maintain friendships in the way that other children have got friends.
In the last six to nine months that's actually improved.
So if you were interviewing me half a year ago, I would say he hasn't got any friends, at all,
but now he has and they are people that we can let them play together,
in a way that we couldn't have done 12 months ago
We would have just had to be there all the time,
making sure that the other child wasn't going to be, you know,
hurt or made to feel bad or you know things going wrong.
So that's part of growing up.
Charlie would be extremely prone to bullying,
doesn't happen in the school he's in it at the moment,
but in a normal school he would be ever so easy to take the mickey out of.
I mean you can just light his touch paper in a second and he goes bonkers.
So a normal kind of school environment or a workplace or anywhere like that,
where people are sometimes just having a bit of banter.
And the friends he's got are calm, lovely, empathetic people,
so he's actually got some friends now who are really good for him which is nice,
you know, that makes a difference.
Well areas of strength for him.
He's good at trampolining.
Actually this is a tip for a parent, if you have an Autistic kid, get a trampoline.
He spends hours on it, I mean hours.
And the other one I'd say is stick at reading. So he's good at reading.
He was slow to it, behind other children but then eventually it clicked like that
and so he does read.
And his reading age is advanced than his age,
so I think his reading age is like 11 and a half, or something like that
and that's opened up a new world.
So he does, and again he doesn't naturally sit down and read a book,
but he can do and he will do, and he likes stories and he will read books for himself.
So yeah, sticking at reading, that's where we are at at the moment.
Writing, we're sort of, let's stick at writing, see if we can get there because fine motor skills are very hard.
He's very good at mental arithmetic
but he's behind on maths because his writing skills are so poor,
he can't do complicated multiplication or division sums,
where you need to put your working down on a piece of paper.
So things like reward charts don't work very well.
He gets very angry if he doesn't get his star
and they get ripped off the wall and thrown away and, I think,
one of the things we've learnt is saying,
if you're good for a week or a day or half an hour increases his anxiety levels
because then he's thinking about, oh well if I'm not good then I won't get it,
and it often makes him more prone to bad behaviour than the other way around.
So we don't really use rewards for Charlie very much, it just doesn't work.
Mostly because it raises his anxiety levels.
So we will sometimes withdraw privileges,
which is mostly screen time, for bad behaviour,
if we think bad behaviour has just been a naughty child,
as opposed to an autistic sort of anxious moment or period of time.
But otherwise we've learned rewards are problematic.
So eloquent, Autistic people will describe themselves as Autistic,
not as having Autism.
So I heard a very good speech from an Autistic man.
He said look, you know there are tall people but they're not described as having 'tallism',
and there are bald people but they're not described as having 'baldism'
and there are short people and fat people and that's not described as a disease,
these are all things that people have.
In terms of a condition which expresses itself in how they are,
but it's deep-rooted in the genetics of how their DNA is put together.
And being Autistic therefore is a description of a genetic condition
and it is a genetic condition, it's not a disease.
You know, there's very interesting research about some of the other contributors,
that there might be to being Autistic but it's a genetic condition,
it's rooted in 400 different genes, is the latest research and theory so,
you know, that's very insightful.
And so Autistic people don't like to be described as having a disease.
I've got a disorder.
It's a learning disability, I'm Autistic but I don't have Autism.
I don't suffer from a disease,
and I think that it's really important that we listen to the voices of people who are Autistic
in saying that's how I want to be described.