Actually, World Book Day is not a fun day when you’re on the autism spectrum

This morning I packed Ava off to school happy as a sparrow in the hand-stitched dragon costume I made this week from felt and a red hoodie. It was a picture perfect moment of parenting glory, with accolades pouring in on social media for my prowess with the sewing machine. But it wasn’t Ava who had my attention this morning, as usual, it was Jonah. Moody, difficult Jonah. Jonah who refused, as he has done every other year, for most of his school career, to dress up.

No, Jonah isn’t some hormonal teenager experimenting with gentle anarchy. He’s a ten-year-old with Asperger’s, and for him, dressing up isn’t fun. It’s weird, uncomfortable, stressful. Being told to “join in” isn’t going to make him join in. It’s going to make him feel awkward. His teacher telling him he HAS to dress up is just going to put him in a bad mood. It’s not going to make him dress up.

I feel like I’m battling the school at the moment, and in particular, Jonah’s teacher, who collared me in the first week in the playground in front of a bunch of other mums to tell me that Jonah wasn’t concentrating in class. No shit, Jonah finds it hard to concentrate on anything that isn’t Minecraft, but what do you want ME to do about it, Mr Teacher? And by the way, if he’s not finding your lessons engaging (Jonah really only ever engages with Minecraft at the moment) surely it’s your job to find ways to make it engaging. But, yeah, I guess you have 30 other kids to teach and meeting Jonah’s needs aren’t your priority, especially if those needs go beyond literacy and numeracy.

Where Jonah is academically able – and he is, his social and emotional needs are frequently undermined as not important by his mainstream school. For all he often has meltdowns in the playground or complains about getting picked on by his less academically capable, but far better at football peer group – which happens with monotonous regularity. Jonah might be top of his class in many respects, but in other ways, he is spiralling. Take this morning, he complained of a pain, vague and unspecified, he said he felt dizzy when he stood up, and took longer doing his Kumon homework, which normally he flies through.

I felt his temperature. He was warm, but no more than Ava – perhaps he has a mild virus – there’re lots going around. But I suspect it was Worldbookdayitus. You see, for Jonah, an out of the ordinary day is stressful. His classmates, in costume, might as well be aliens. He doesn’t get the point of dressing up himself, for all he’s become a consistent (though often stuck-on-one-series-or-other, notably Tom Gates ) book reader. He won’t even go as a character that is basically a human boy. Jonah is Jonah. He doesn’t want to be anyone else. Surely that’s ok?

I remember in years gone by, desperate to prove my creative prowess in the playground – that I was a “good mum” who “cared about my kids’ literary development” or some bullshit, trying to tempt him with elaborate costumes. Once, I managed to make him go as Mr Gum. Orange painted foam beard, tramp’s coat, the works. But even as a toddler, the boy was not for turning … into Batman, Buzz Lightyear, or even Thomas The Tank Engine back in the day, despite making him a nearly life-sized train out of cardboard and sticky backed plastic. Jonah really, really doesn’t like dressing up – believe me, I’ve tried every trick in the book.

Today, I had to drag him into school. I said I’d talk to his teacher, and when I got to class – the teacher dressed in a wolf head – and I said, slightly wild of eye and stressed of demeanor, that I needed to talk about Jonah, I could see he saw me as a trouble maker; a spoilsport – a word that no doubt he uses, privately, about dear old, difficult Jonah. 

 You see, I tried to say to Jonah on the way to school, that he would find the world a whole lot easier if sometimes, he just joined in. I’d love my son to join in, do normal stuff, dare I say, be normal? But, honestly, honestly, he can’t, won’t and there really is no point trying. I told the teacher that Jonah wasn’t feeling very well. Is he ill?, he asked. I’m not sure. To be honest, I said, I think he’s depressed. The teacher looked at me askance. It’s meant to be a fun day, he said. Yeah, but for Jonah, I said, I don’t think it’s actually so much fun.

Perhaps I’m projecting. I have been more chipper myself, if I’m honest, and last night, I had something of a meltdown too. Cried into my duvet about how hard ithas been working, raising kids and possibly, just possibly, being a bit on the spectrum myself. With Jonah, though, things he says worry me. Things like, “I wish I hadn’t been born.” Things like, “I wish I wasn’t only good at not cool stuff”. Jonah is learning he’s different, and he’s finding it tough. No matter what I or anyone else can do for Jonah, he will always find the world that little bit harder than most other people and nothing I can do can change that. But I can try and raise awareness that on World Book Day, or any other day for that matter, by just being himself, Jonah isn’t being difficult, or a spoilsport. It’s just, it’s hard enough for Jonah to be Jonah, without him trying to be someone else.