Autism Awareness Week started this week, which as an aside, I actually think should be rebranded as Autism Acceptance Week because that's actually what is needed. There’s so much I want to say. But there’s also so much I can’t. On one hand I desperately want things to be better for Woody out in the world, so I have a burning urge to share it all so that people start to see the good and bad that autism brings so that acceptance can finally be achieved. But I also need to be mindful of Woody’s privacy. He’s nine now. He’s more aware of his autism and feeling ‘different’ in the world. He’s trying to come to terms with and accept being autistic himself. He’s also pretty much read the whole of the internet - I genuinely think he’s had so much screen time he’s finally completed it, ha! - so I need to know that if he stumbled on this blog post he’d feel happy that I talked about it to friends and strangers around the world.
So, I simply asked him. I said I’ll be writing this for Autism Week to help with acceptance and asked; What do you want the world to know? What’s it like being autistic? His answer floored me. Though it didn’t surprise me, as he’s been getting more and more vocal lately about his struggles. He said;
“What’s it like?...It’s hell. If you could feel what it feels like to be me, you wouldn’t want to live.”
He went on to explain;
“Me and my brain don’t get along.” “It feels like having a shadow following me stopping me from doing things.” “It’s like I’m in a constant battle with my brain. Like I’m being held hostage by it.”
When you hear your child saying things like that you can’t help but feel heartbroken. How can someone so young have so much weight on his small, perfect, sun-kissed shoulders? He should be worrying about what filling I’ve put in his sandwich for packed lunch, not battling with the inner demons in his head holding him hostage. We’ve seen him struggle more and more over the years and this year has felt like the hardest to date. So actually none of what he said surprised us. (And just to note, to honour his privacy I'm only including a fraction of what's been going on lately.)
We knew moving to the other side of the planet would be hard for Woody. Change is incredibly tricky for autistic people. But we didn’t anticipate quite how hard it would be for him to adjust. It’s tough starting a new school. But starting a new school when you feel different to all your peers is a bit like starting somewhere with a foreign language that no matter how hard you try you’ll never learn. He’s a smart, funny, very, very likeable kid. Yet he’s already experienced bullying. And he’s just not sure what he’s supposed to do to fit in and 'be like everyone else’.
It’s ironic because the fact he doesn’t fit in, to us anyway, is such a huge positive that autism has given him. He doesn’t just learn the stuff the teacher tells him like everyone else, he pushes back if he doesn’t have enough proof or doesn’t agree with something, or it's being pigeoned to him in an uninspiring way, which I guess is refreshing. In many ways autistic traits are traits that everyone should have more of. He’s a stickler for fairness. He’s incredibly honest; he just can’t lie, which makes things pretty easy when you’re trying to work out who ate the house stash of jelly beans. Or if he’s watched any contraband content on Netflix. (“Okay, guys.....so I just watched something that was rated 15 when I shouldn’t have…”) He’s also incredibly loyal, and has a brilliant memory; useful when you can’t remember your Netflix password, the car number plate or the name of the little Hotel you stayed in five years ago in Mallorca.
He also questions things that other neurotypical people might not. He was getting in a tiz the other day because he said children are often depicted in films and books as ‘stupid’ and ‘sugar hungry’ with the adults always mocking them for ‘only ever wanting sweets and not caring about anything else.’ I doubt most other nine year olds would push back on the propaganda that’s being peddled about them. He’s probably also the only kid we know who’ll check the safety record of a theme park before he sets foot in it, like he did before our family trip to Luna Park this weekend. Or question why adults don’t give themselves a two day week and a five day weekend (‘But it doesn’t make sense! It’s completely the wrong way round!’) He is also the only child in the park after school that regularly chats to the other parents and asks them what they did at the weekend.
I love that he doesn’t fit in for all these reasons. But when you’re nine, all you desperately want is to be like everyone else. His school is small and he was really worried he wouldn’t ‘find anyone like me there.’ It’s been hard to leave his old school friends behind. They’ve all grown up with him in their class, so were completely and utterly accepting of him. As far as we know he was never bullied there. If he was wobbly on his way in to school, one of his classmates would simply take his hand and lead him in, unprompted by any adult, all just because they knew that’s what he needed. And that, I think, is the crux of real acceptance. You need to live with diversity to be truly inclusive. You need to see autistic people around you and be so aware of how they tick that you instinctively adapt your behaviour to accommodate their needs. Not the other way round. That’s exactly what happened in the wonderful microcosmic world of his old school.
His new school is just starting on the journey of getting to know him and his new classmates are learning to adapt. Apparently the teacher said he took one whole lesson recently lying on the floor at her feet. She said it didn’t really disrupt anyone, he was more comfortable and everyone was listening to the book she was reading so all was cool. I’m sure lots of teachers would’ve made him sit up straight at the table, maybe even punished him for lying on the floor when everyone else was sat at tables. But what good would that have done? The class would’ve been disrupted; the other kids would see a scene unfold and no one would’ve heard the ‘cool’ story the teacher was reading. He also told me today there's a kid in his class with adhd who sometimes needs to swear and they're cool with that too if he needs to. "The rest of us are allowed anything below the F word...." I like how inclusive that rule is. LOL.
The world has made fairly big strides with acceptance in the last few years. It means less people flinch when I mention my son’s autistic. We still get people saying the usual Autism Bingo phrases;
‘He doesn’t look autistic.’ ‘He’s pretty normal for an autistic person.’ ‘You’re lucky. I’m sure he’ll be okay when he’s older. He’s not got it that badly.’
I always feel the need to explain his struggles because I think one of the biggest challenges he faces, and I’m sure a lot of autistic people face, is that it’s such a hidden disability so it can be easy to dismiss or diminish the struggles of his day to day life. And life is tough for Woody. Most of the time he doesn’t see his autism as a gift or a superpower. In fact, at the moment, he gets cross if we suggest his autism might be a good thing. We might’ve created a lovely art collaboration from the beautiful things he says with Woodism, but he doesn’t think he says beautiful things. He’s incredibly hard on himself. He hates that when he looks up in the classroom all the kids are on question 22 when he’s still on question 3. He hates the intrusive thoughts that are spiralling around his head at the moment, stopping him sleeping or feeling any joy. His anxiety is so bad, he's developed OCD and says; ‘the things that are already worrying for everyone, are ten times worse thanks to my autism.’ His anxiety stops him feeling safe when he’s alone, so he can’t be on his own for a second. He hasn’t slept in his own bedroom for 2 years.
I’m desperate to know what his struggles feel like. As his Mum it’s almost been a compulsion to find out how he sees the world to help bat his demons away. He often gets sad that he’s the only one in the family that’s autistic. I hate that it makes him feel like the ‘odd one out.' How lonely must that feel even within the confines of a loving family? Sometimes I just hold him while he begs me to help him and I just don’t know what to do. He describes the emotion he feels as a bit like ‘vomiting sadness’ which is a visceral and extraordinary description of what it feels like to be struggling with the emotional overload that his autism brings. He’s spent the last few weeks pretending to be a cat ‘because it’s easier than being me.’
Woody has a strong affiliation with animals – dogs and cats in particular – because ‘they’re often misunderstood too.’ He says that animals can’t speak and he relates to that, which is interesting considering how articulate he is. I think he’s trying to explain that communicating in an ableist world is fraught with misunderstandings and hidden social codes that leave him chasing his tail like a dog. My hope is that more people start to learn to ‘speak autistic’, so he can start moving through the world with people just as willing to take his hand as those old classmates did.
If your child is neurotypical and they have any autistic peers in their class they’re getting a head start in life. They’ll be becoming bilingual in neurodifferent ‘languages’ which will make them truly accepting. It means they’ll leave school and not flinch when they interview an autistic candidate at work and simply ask the right questions and make the right allowances. They’ll grow up and spot the guy struggling in the supermarket might be having a bit of a sensory overload and could do with some kindness. They’ll hire autistic people, date autistic people and hang with autistic friends, not bothered when they only ever get asked to sit and watch the same film a thousand times. It's why I find it so important that schools are inclusive and accommodating as they can be in the mix of their classes. The future depends on it.
We’re still working on Woody’s own acceptance of being autistic. I can see how well he thrives when he's surrounded by people who 'get' him. My dream as he grows up is that he learns to manage the struggles better and finds his groove in the world that makes the demons less prominent. Until that happens, I'll plough on pushing acceptance everywhere else, so the rest of the world can take their responsibility in that too. With his guidance and blessing first, of course.
Some great accounts to follow to learn more about autism can be found here: