But he looks normal…

(This Guest post originally appeared on my Facebook page Cat on a Trampoline in March 2014. It was written by Helen, a Mother of three whose eldest child is Autistic. I like it because it highlights some of the life challenges faced by “high functioning” autistic children, and the difficult decisions faced by their parents. I have preserved and reposted it here, as I have with other guest posts by non-bloggers, so that it does not become lost in my Facebook timeline)

A really quick word about me first, I have three children, my eldest boy is eleven and has what used to be called Aspergers Syndrome, but I’m reliably informed we must now call it “High Functioning Autism.” Whenever I look at pages for autistic families and read about their struggles, their challenges, their emotionally and physically drained parents I think how lucky we are – my son sleeps at night, he can communicate (sometimes a little too much, but more of that later!), he’s exceptionally clever and we’re confident he’ll live completely independently and have a relatively typical life (I say typical because I hate the words ‘normal’ and ‘ordinary’).

He’s funny, and I mean HILARIOUS. He loves jokes and puns. That’s why his Dad has had exactly the same birthday card about four times. It’s got a bowl of beans on the front and says “To Dad, Hope you have the best birthday there’s ever bean.” He finds that hysterical and I’m pretty sure if it came with various other relatives on the front, we’d all be getting it. One day we were shopping in town when he decided randomly to affect a comedy French accent (think the policeman from ‘Allo ‘Allo) which sent the shop assistant into hysterical laughter and she told him he’d made her day. Recently a couple of friends of mine took him out, and there was a lady smoking outside a restaurant (no prizes for guessing what happened next) he proceeded to lecture her on the dangers of smoking with particularly graphic details about lung cancer. Apparently he was only satisfied when the poor woman promised him faithfully she would give up.

In department stores he walks through the perfume counters announcing “It stinks in here!” At the top of his voice while holding his nose in disgust. Once he cut eyeholes in the curtains, and when I asked why he looked at me like that was the stupidest question ever and replied “I need them
for when I’m being a spy.” There are millions of these tales – every parent of a high functioning autistic child could tell you a dozen I’m sure. My son is a happy, bright, fun-loving boy. Oh, and not forgetting every autistic parent’s favourite: “He looks normal.”

But like all autistic kids, he struggles. He finds school incredibly difficult, not academically but socially. He doesn’t cope well with change to his routine and he’d eat the same lunch every single day if he could, so the unexpected is awful for him – recently he had a supply teacher who I’m sure was a perfectly pleasant man, but we never got chance to find out as our son spent the remainder of the lesson locked in the toilet refusing to come out.This is quite an extreme example, but it shows how hard unexpected change can be.

And this is why we’re looking forward with blind panic, because in September he’s leaving the relative security of primary school and moving into the frankly terrifying world of secondary education. Now I understand all parents dread secondary school, and to a certain extent we’re all singing from the same hymn sheet “what if my child’s bullied, if they don’t make friends, if the work’s too hard, if they get lost…..” the list is extensive to say the least, but our list includes “What if it smells funny, what if the dining hall is too noisy for him, how will he cope with the bus, with lots of different teachers, with moving from room to room?”

We made a very bold decision in choosing his school because we haven’t followed the transition into the expected high school and have chosen the local boy’s school (I must add it’s a outstanding school with excellent facilities so we’ve definitely not compromised his education). I know you’re thinking “Good grief woman, you’ve just listed all those difficulties, why would you separate him from people he knows, when he struggles with transition, not to mention how to make and maintain friends? Are you actually mad people?”

The answer is simple. He needs a new start. Some of the kids in his class are horrible to him. They think it’s funny to wind him up, to call him names and stress him out so he then retaliates and ends up in trouble. They know he’s different, that he talks to himself, he does this peculiar flappy thing with his hands, he’s no good at sport, he likes sci-fi, he’s a geek, he uses big words they don’t understand…. who’d want that following them to high school? Who will want to be his friend when other boys are telling them he’s weird?

No, it’s clean slate time. Since he got his offer I’ve found out four other boys he knows all of whom are lovely, are going there too and we’re feeling even better about our decision. Yes it was risky, and we won’t know until September if we’ve made the right decision but the panic is now only (as he would say) about 73.2%

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