I was chatting with someone who came to one of the shows the other day. They'd never met a person with autism before, and they said it made them nervous as they didn't know what they were meant to do or say.
I admired their honesty. We're all a bit scared of those who are different. And often nowadays it's not out of rudeness, it's just because we desperately want to do the right thing, and we're so scared of getting it wrong.
I remember going to visit a special school once and the Headteacher invited us into her office and asked The Boy to take a seat. He picked it up and asked her, "Where to?". She was mortified, and apologised so many times it became really uncomfortable. I think in her eyes she'd committed a crime so bad that she might as well have scrawled "I HATE AUTISM" in big red letters across the whiteboard. Relax, it's okay to mess up. The Boy spends his life being misunderstood, I'm sure he'll forgive you for getting it wrong once in a while.
However, if you're still feeling uncertain, here's a list of Do's or Dont's if you ever get to meet him. A word of warning though, these apply only to him. Please don't ever think that what you read in this blog is 'Autism: the manual'. It isn't. Each and every person with autism is as unique and different as you and I. This is just 'The Boy: the manual'. Although I have a feeling bits of it may well apply to others...
DOs and DON'Ts of Meeting The Boy for the First Time
All of a sudden there's a huge influx of 'autism-friendly' cinema screenings. The idea is brilliant in principle. The sound turned down low. Some lights left on. An understanding audience. There's just one problem with it all from The Boy's point of view. There's other people with autism there.
It's one of the major difficulties with all things tailored towards those on the spectrum. The likelihood that there will be other people on the spectrum there too. The irony is that the one group of people who The Boy is most intolerant of are those who share the same diagnosis as himself.
I don't know the answer - you can see the same problem in every ASD (autistic spectrum disorder) school too. Probably the biggest hurdle many of the children have to overcome is learning to share their space with others who are on the spectrum. Who by the very nature of their diagnosis find social interaction so difficult. The Boy hates noise and to be touched. Yet he will think nothing of creating huge amounts of noise and touching others, often inappropriately and often without warning. Very often some of his less savoury traits are passed on to his autistic peers, and vice-versa.
I suppose the ideal solution would be to make everything more inclusive, to change the rest of the world to be more accepting of those with autism. And it is happening. Maybe slower than a lot of us would like, but it's happening. There have been huge steps forward in the years since The Boy was diagnosed. But even then there are limits to just how much acceptance can do.
I would have loved for The Boy to have been taught in a mainstream school. Even in a specialised unit. But I also recognise that every other child in the class deserves an education as much as he does. And there is no doubt that due to his challenging behaviour other children's education was suffering. No amount of acceptance would ever change that. So, do he and others like him go to an ASD school for their benefit or for the benefit of the other children around them? If we're honest, it's probably a bit of both. And so are 'autism-friendly' cinema screenings really for the benefit of those with autism, or are they just to stop other people's enjoyment of the film being interrupted? It's probably a bit of both as well. But how can we expect people to be more understanding of the condition if they don't experience it day to day? And how can we expect those with ASD to integrate fully into a society where they only mix with others with ASD? What's with all the questions?
I feel like I've opened a right can of worms here - it only came about because some cartoon is on at the cinema... 'Autism-friendly' screenings have to be a good thing - any acceptance can't be bad. But we have to decide who we're doing it for. The last 'autism-friendly' screening I went to was packed... it was far noisier and busier than a standard viewing. And The Boy struggled as a result. The 'autism-friendly' bit felt like it was FOR ME, not for him. It was to make me feel more at ease knowing I was in a cinema with those who understood and who weren't judging. The benefits to him were minimal, if any.
If it was down to The Boy, an autistic-friendly cinema is a very simple thing indeed. It would look very similar to a normal cinema with a big screen. But with just one seat.
1. Repeat over and over 'it's just five days, it's just five days' while rocking on the kitchen floor and defrosting chocolate gateau in the microwave.
2. Contact the National Grid to inform them that the energy surge is perfectly normal for this time of year, it's just apparently someone needs to have every electrical device in the home turned on.
3. Recognise that 'sensitivity to noise' just means 'sensitivity to YOUR noise'. Their own noise is perfectly acceptable.
4. Try to convince someone that the sun won't melt them, that it might be quite nice to leave the home at some point even if it's just for fifteen seconds. Keep this up until Wednesday, then as a compromise suggest at least opening the lounge curtains for an hour.
5. Order some extra online shopping for Thursday NOW. Whatever supplies you think are enough won't be. Don't mess around with wine, there's no time for the 12.5% ABV to kick in. Spirits. Whatever's on offer. No mixer.
6. If things are going quite well, make sure you ruin it all on Tuesday by suggesting you plug in the hoover for five minutes.
7. To ensure maximum fun, try to coincide filling in your Disability Living Allowance renewal forms with the holiday period.
8. Sod it, why not give the Tax Credits Helpline a call too.
9. If the man calls round to read the gas and electric meters, pretend you aren't in. He'll spot you through the window when he calls again on the one afternoon you opened the curtains for an hour. Begrudgingly let him in and explain the carnage by pretending you've been decorating.
10. Make it to the weekend. Congratulate yourself. Then open the school bag and remove the rotting remains from last week's lunchbox. Discover the letter reminding all parents that Monday is an INSET Day. Sob.
The Boy got soaked on our way back from the shops this morning. Mainly because Crap Dad forgot his coat. As we walked home the sun came out and he dried off. Or, to put it in his words, "All the wet has gone off me".
He was chatty today. And inquisitive. The chatty bit happens quite often - normally about something he's seen on the internet or a Doctor Who fact that suddenly needs sharing. But the inquisitive bit is a treat to be savoured, a rarity. This is the boy who'd rather spend his days at school locking himself in a toilet than acquiring knowledge. Knowledge is something to be gained in secret from a computer screen when no-one is looking, not something to be learnt from a person. But today he wanted to know stuff. He wanted to know about The Past.
The Past is a big confusing mess to The Boy. Anything and everything that took place before today happened "a long time ago". Something that happened yesterday is now confined to the same timeframe as ten years ago. And events that happened before he was born are just inconceivable to him. In The Boy's eyes the world and everything in it was created the very same day he was.
This all came about because the other day we drove past his Nursery. The Boy went there eight years ago. And as we drove past a child was coming out of the door. They must have been around two years of age. "Who's she?", The Boy said. "I don't remember her! She must be new. I hope my friends are looking after her". So, we talked about how none of his friends are there anymore, how they've all grown up like he has, and how he won't know anybody in the nursery now.
And this talk of the past has obviously been playing on his mind. Because today he asked me about when I was a child. So, I told him all about how The Grandmother is my mum and I lived with her and his Uncles who are my brothers, together with The Grandad who isn't here anymore. And he wanted to know more. He asked about our house, and the garden, and what the bedrooms were like. I finally got the chance to tell my son how tough it was in the olden days and how we had no heating and bunk beds, but ooh we were 'appy...
The conversation lasted about seven minutes. Seven glorious, golden minutes. He asked more questions, about who shared a bedroom with who, and who I sat next to at the dinner table. And it seemed to be sinking in. This idea of a past without him. He finally seemed to be getting it. Then suddenly he became more animated. "Who did I sit next to at dinner?", he asked, "did I have a bunk bed too?".
Ah well, there's always tomorrow, when today will become yesterday too. In many ways you're right, son. There was no world before you.
You will need:
Add all the dry ingredients to the mug. Ensure each tablespoon is an exact, equal measurement with painstaking accuracy:
Lob some other stuff in the mug:
Mix all the dry ingredients then carefully add an egg. All of it. Wish you'd never moved on from beans on toast:
Pick the shell out. Listen to someone moaning that they don't want any cake if it tastes of egg. Put milk and oil in and stir with a spoon. Manipulate the image in Photoshop to give the impression that the spoon is actually being moved by The Boy. Ensure there is plenty of unmixed flour at the bottom and sides:
Open a small corner of the chocolate chips and sprinkle a couple on to the cake:
Put in the microwave for three minutes. Contemplate your life. See how many times The Boy will ask if it will taste of egg before the countdown reaches zero:
The answer is eleven. Just check on the recipe page again to see how the finished cake will look:
Yummy. Open the microwave:
Exactly the same. Serve with custard.
The Boy has cerebral palsy as well as autism. And although not a degenerative condition, the effects of it worsen as he grows. And recently The Boy has become more tired, frequently taking naps at school, and his walking gait has deteriorated.
So, after speaking with Mr Teacher, the day has come. Tomorrow The Boy takes his wheelchair to school for the first time in his life. And although it's a day I knew was always on the horizon, maybe I thought it would be a few years away from now, and the reality of it has hit home and I suppose it's knocked me a bit. It's just another reminder how the future creeps up on us when we least expect it, and with it comes that fear of what else it might bring.
I remember the first visit with The Boy to the wheelchair clinic. I hated it. It was just a feeling of unbearable sadness. Alright he had a strange walk, but we got by. Yes, he became tired on long journeys. But that's what piggybacks and fireman's lifts were for. We didn't need wheelchairs. They were for other people.
Sometimes though, we put our own fears and apprehensions on our children. And that's what I have to remember. None of this is about me. The moment we walked into the wheelchair clinic, The Boy LOVED it. To him it was like the best bike shop in the world. Choosing between a Grifter or a BMX. Aluminium frames, puncture proof tyres, test drives and a technician to show you how to do a spin. He's never been able to ride a bike, apart from a three-wheeler - his wheelchair is the next best thing. And what little boy wouldn't want to take their bike to school?
So he's excited about tomorrow. He can't wait to show his wheelchair off to the other kids. He has told me the instructions for the other children - they can push him, but not without asking first. He has been practicing his spins (push one wheel forward, pull the other back, in case you were wondering), and is ready for the attention and glory. I have no doubt that he will be reclining in his seat as he is pushed around the playground waving to the admiring crowds from his very own Popemobile.
Last week when The Boy was having his meltdown day (or one of them), the Deputy Head laughingly told me that for a boy with cerebral palsy, he can't half run when he doesn't want to get caught... and I'm not suggesting for one minute that he carries on doing that, BUT...
Run like the wind my beautiful boy, run like the wind.
The Boy is beginning to recognise Girls. For a long time he didn't know the difference between a boy and a girl, apart from girls had long hair. Boys with long hair were also girls. But now... I think he knows.
We were driving home from school the other day. We pulled up alongside a bus in traffic. The Boy has always liked staring at people on buses. Face to face he'll barely acknowledge you, but when we pull up alongside a bus It's like the glass offers protection, and he can examine the strange creatures onboard closely. Watching. Studying. Learning.
On this day The Boy suddenly turned away. "They waved at me", he said.
"Who did?" I asked as the traffic moved and we drove on.
"Teenagers". Teenagers has always been his name for anyone who appears older than seven but younger than thirty. He says the word as if they're trouble. Big People.
I asked him if he waved back. He looked at me like this was the first time he'd ever heard of such an idea. That a human being might reciprocate a greeting to another, what a ridiculous notion. "No", he said incredulously.
We said no more, and carried on the journey home as normal with him watching Minecraft videos on my mobile phone and me trying to decide what the bloodyhell to write in the next blog.
The next morning we're driving back to school, same Minecraft video, same route, same routine, same Groundhog Day, same, same, same, same, same... and then a thought occurs to me.
"Hey, you know these teenagers who waved at you yesterday... Were they girls?"
He blushed! The Boy blushed! He went bright red and just looked even harder at the video he was watching. "Shuuuutttuuuuuuppppppppp", he drawled.
"They fancied you!", I said, "those girls fancied you!"
"Stoooppppp!", he said, getting redder and redder.
"You must be really good looking if they waved at you, they must have thought you were hot. Next time you should wave back."
And then it was as if he remembered what to do, he'd seen it in a film. He looked up from the screen.
"Nah", he said, getting excited, "next time I'll wink at them like this".
Then he scrunched up one eye and his tongue stuck out and his whole face grimmaced as he practiced his seductive wink. And I'll be honest, it maybe needs a bit of work to remove the sinister overtones, but once we've mastered that, I reckon we're on to a winner.
Lock up your daughters. The Boy's in town.
I've received a few messages recently about what a privilege it is for people to read about my life with The Boy. And that's really touched me, but the truth is, the privilege is all mine.
You see it's my turn to say thank you, to you. I don't want people to think this blog is some altruistic exercise where I selflessly throw our lives open for the good of others. It's far from a one-way street... this whole thing has had such a positive effect on the two of us. And one of my favourite parts of the blog is now the Comments section.
I really enjoy reading people's comments, and I so wish I had time to reply to them, but please know that every single one of them is read and treasured not just by me but by many of those who visit this site each day. I have laughed, cried, nodded in agreement, questioned what some of you have been drinking and fiercely disagreed with others! I get emails from people telling me they love the 'comments' section as much as they love the blog itself, so to everyone who has ever left a message, you are reaching out and helping people more than you know. And Graeme, I can't wait to collect The Boy from school and share your tomato joke...
I love the different groups that now write in with comments. There are parents, regardless of whether their child has a disability or not, parents who can relate simply because they know what it means to love someone more than any of us ever thought possible. Parents who want to share their story too. There's those who work in the field of special needs, whose care and compassion and desire to make a difference shines through in messages offering support and guidance. Then there's those without children or a link to autism, who just have a desire to learn more about the condition - the simple fact that you are here means you are helping to change attitudes more than you will ever realise.
Then there are my favourite group... those who live with autism inside them every day. There will always be a place for you here. You offer an insight, a way in, a glimpse into your world far more than any words I write ever can. I always said if I had one wish in this life, it would be to have the ability to climb into The Boy's head for one day... sod it, not even a day, I'd take an hour even, a minute, a second... to see what he sees. To experience the world the way he does. And maybe that way I might be able to understand him better. And to those of you with autism, you're the closest I can ever come to that. You offer a beacon of hope that burns brighter than any light. Your words will always, always be worth more than this blog and all the books in the world combined.
So there you go - if I'm making a difference to people's lives, then I just want you to know that it's reciprocated so many times over. All I ever hoped when I started this was that the world might understand my son a little bit more. Never in my wildest dreams did I imagine people would take him into their hearts the way you have, and that makes me the proudest Dad in the land.
I'm delighted that each and every one of you have found this tiny little corner of the internet and I hope you'll stick around. Please make yourselves at home, and let's make it as inclusive a place as we all hope and dream the world outside might one day be.
The privilege is definitely all mine.
Don't let anyone ever tell you that those with autism don't have a sense of humour.
The very best thing about The Boy is his ability to laugh. When something makes him laugh he doesn't stop for ages and ages. He has a laugh that throws its arms around you and can suck you in and forget everything else that might have occurred that day.
He loves slapstick. The sillier the better. He's the reason why ITV3 still exists, watching endless episodes of Mr Bean again and again. His sense of humour has been what's saved us in the middle of many a meltdown. No matter how angry you are, there's nothing funnier than watching Dad fall over, trip up into walls or bang his head on the door.
More recently we've tried to expand our comedy repertoire into accents. The Boy has always done a mean American accent thanks to Ben 10, and for a number of years that was the only voice he used when playing. However after a fruitful Saturday a few weeks ago I'm pleased to tell you that The Boy can now say "Have a Break, Have a Kwik-Krap" in a Scouse accent. These are the essential life skills that I am proud as a father to pass on to my next-of-kin to ensure his safe passage in this world.
Despite this ability to laugh, there's one thing that's still largely lost on him though. Jokes. We've been reading a joke book on the way to school. No laughs. Instead after each joke The Boy has been explaining to me why the joke is funny:
Q:What do you call a boy who likes rolling in leaves?
D'ya get it? It's because boys like trees
Q: What fish can fix pianos?
A: A Tuna fish
D'ya get it? It's because tuna comes in cans
Q: What do you call a girl with a church on her head?
D'ya get it? It's because churches are heavy
Word play seems largely lost on him. And then the other morning he turned the page and read a joke that had him laughing so hard he couldn't speak. Every time he tried to tell the joke he couldn't get the words out. He's been able to read for around four years now and nothing has ever made him laugh like that. Eventually he spluttered out:
Q: What's green and dangerous?
A: An angry lettuce
He's got good taste, my boy.
The Boy survived the trauma of having no internet connection for two days at the weekend. Apparently a trip to the Lego Shop with mum to spend his birthday money helped alleviate some of the pain.
It's too easy to see the internet and his reliance on it as a bad thing though. And it's too easy for me to mock him for his pain at having to spend some time away from it. But I've come to realise that the internet and new technology means far, far more to him than just Netflix and Minecraft. The internet holds everything for him. It gives him a sense of control when he often struggles with the demands others place on him. And it helps him make sense of a world that often makes no sense.
The internet for children isn't always the big, bad thing that it's made out to be. We've used Google Streetmap for a while now - reassuringly there to take away anxiety and show you how strange, unfamiliar places will look. YouTube for videos of holiday destinations or theme parks so you know exactly what's coming. And nowadays there's countless apps to be used as communication aids, reward charts and visual timetables. But the biggest change in the last few months is that the internet has given The Boy a chance to make friends. And perhaps more importantly, keep them.
You may remember the gang in the playground from this post last month? Well, three of them are his friends now. Proper friends. All online. Voices through the headphones. The Boy can take part in adventures that at one time never seemed possible. They've raced cars together, discovered diamonds, fought creepers and drawn pictures of boobies that he thinks I don't know about. Each evening the screen comes alive and gives him a chance to interact in a way that others take for granted. He seems unable to maintain friendships in the real world - hitting out, touching people inappropriately, not sharing or taking turns. But take away the ambiguity of facial expressions, throw in a volume switch to enable him to turn down loud voices, add some brilliant young lads who are tolerant of those who are different and suddenly he's just one of the boys.
Every now and then the old and new worlds collide. One of the lad's mums got in touch. Her son wanted to send something to The Boy... The thrill of receiving a letter when it's not even your birthday was almost enough. But inside was a card made up of photos of each of his new friends. And The Boy takes it everywhere. His pride and joy has even been to school with him. And each night it sits next to his screen as if they're in the room with him. His friends.
So on Monday after a weekend away from the internet he said he couldn't wait to go online that evening. "My friends will have missed me", he said.
And I actually think they did.
This blog is about bringing up The Boy. He's 12 years old and autistic. It's written by The Dad. It's my words, my view. Other people will think differently and have different opinions. Good.