It’s difficult, Autism.

Difficult to understand, difficult to live with and difficult to explain to people who aren’t in that ‘bubble’ of the Autistic community. I guess the same could be said for a variety of things. For example, no matter how hard I try, I just can’t understand Ice Hockey. Or Miley Cyrus. The list goes on.

But, like with most things, you can get a very basic level of understanding on a subject by listening to someone who is an ‘expert’ – unfortunately, I am only an ‘expert’ on my own son as Autism is a very broad term for a disability that can come in all varying degrees of quirks, differences, and problems.

Take the Ice Hockey analogy I used earlier. When I was a kid, a friend explained it to me at a fairly basic level, so, I have a very basic understanding of the sport – I know what a puck is. I know which way the skates are supposed to point. I know that the real Mighty Ducks aren’t coached by Emilio Estevez. Now imagine, with my basic knowledge of Ice Hockey, I’m suddenly introduced to HOCKEYTWO. HOCKEYTWO is like Standard Ice Hockey, only Pucks are now completely made of ice, the ice rink is completely grass, it’s first goal wins, and every team is coached by the player who looks the most like Emilio Estevez.

It would certainly throw me, maybe even shatter my basic knowledge of what Ice Hockey actually is. Especially if I THEN learn that, in addition to Ice Hockey and HOCKEYTWO, there are actually thousands of variations of the game – all with slight similarities, but all with varying differing extremes, rules and regulations and look – Bats instead of sticks, bigger helmets, no helmets, see through helmets, and some even ban all Estevez related interaction! Imagine! No Estevezesessss’es!

It’s an odd comparison, I guess. But it is what Autism is like. For example, there is a debate around Autistic children being diagnosed as Autistic, when in reality, maybe they’re just badly behaved. In Neds case, none of this applies. He’s not ‘Naughty’ in the traditional understanding of what Naughty is – in fact, he’s barely done anything anyone would ever consider ‘Naughty’ in his life – he’s an amazingly good natured child. In fact, the handful of times he has done anything naughty has been because he simply doesn’t understand that what he’s doing could be percieved as bad behaviour, and that’s where his main issue lies.

He doesn’t understand enough. He doesn’t understand the concept of conversation – Ned won’t tell you about his day at school when asked because he doesn’t understand that this is what you’re asking him. To him, it’s an abstract concept. Ned deals in the here and now. He sees a Honda, he will say ‘Honda’. If you pointed to a tree and said ‘What’s this?’ He’d say ‘Tree’. You need to be literal with him and sometimes it’s fucking heartbreaking. Sometimes, I get so jealous of parents I see walking home with their kids – some Neds age – as they ignore their kids rambling on about all the inane boring facts about their 4 hours at pre school. Sometimes I get angry that they’re taking the conversation for granted, and then I instantly feel ashamed. It’s not their fault, it’s not their Kids fault. It’s not Neds fault. It’s just they way we all are I guess.

Neds level of understanding was recently put at an 18-24 month olds level. Ned is 3 and a half, so it’s quite a level behind. It’s difficult explaining anything to him, and we’re completely at a loss and full of dread about the future prospect of potty training. But he uses a tablet better than kids twice his age, he can count to twenty. He knows that ‘N-E-D’ spells Ned. He can recite some of his books word for word. The level of understanding terrifies us for the near future – imagine your child getting chickenpox, and not being able to reassure them that it’s going to be okay, or just imagine any situation with your kids where the issue has been diffused by a quick explanation? to put it into perspective, Ned is terrified of an advert on TV where a father and son fly down a zipwire – because his mind can’t comprehend how they’re doing that.

It’s difficult, to say the least.

He still gets up 2-3 times a night on average, and every time he wakes he’s upset. I think it’s partly because he’s confused, partly because he’s scared and partly because he’s damn tired and wants to just get some shut eye, but doesn’t understand why he can’t. Sometimes, he wakes for 10 seconds, sometimes he cries for an hour or more. But every morning, he’s awake, smiling and back in his happy little world – It probably won’t cross his mind that his parents are completely shattered, and it’s all his unintentional fault, bless him.

But he’s not a fussy eater – he has foods he doesn’t eat, but I’d put it on par with any 3 year old. He doesn’t get uncomfortable when wearing certain clothes, he doesn’t need to have a daily routine to keep him grounded, and although keeping him asleep is impossible, getting him to sleep isn’t really a problem at the moment. All of these can be issues for Autustic people, and I count us lucky to not yet have these sorts of problems.

There are certain routines that, if broken, will upset him. For example, if we go to a restaurant, but it’s full, and we have to leave and go elsewhere, this does upset him, because it’s not usual. Does any of this make sense?

I guess what I’m trying to say is that when you watch these documentaries about ‘Is he Autistic or naughty?’ or you see some horrendous TV rent a gob insulting a disability in 140 characters or less, or if you watch a film where a man with Autism is a mathematical genius, then remember, these are Ice Hockey and HOCKEYTWO. It’s the same sport, but a different sort. You can’t pigeon hole anyone with something like Autism in the same hole as all the other Autistic people. That’s not how it works. A lot of the time, these programs will be focusing on the more shocking aspects or dubious cases because that’s how they get ratings, or website hits, or column inches. They’re not going to talk about a kind hearted, constantly happy little boy who gets scared and upset when the world he’s used to is different because that isn’t going to make people reach for their sky+.

I know it’s difficult to have your own opinion sometimes – I find it hard constantly, especially when most media outlets have an opinion of their own they’d like to pop into your mindset. But every now and then, before you get an opinion based on something you’ve seen about a subject, read something else about it. Then, read something else. Then, try and draw your own conclusions. It’s fascinating what you’ll find when you peek behind the curtain.


Side note – huge congratulations to my wife, who raised over £3000 for the National Autistic society thanks to her Aut:ction. There are good people out there, and I’m very proud to be married to one.


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