It’s World Autism Awareness day today. Across the globe, people are lighting it up blue and spreading the word to raise awareness of the condition.
In our house (any many others) it’s autism awareness day 24/7.
Our lovely son Christopher is 8 years’ old. At the age of 5 he was diagnosed with autism, learning difficulties and dyspraxia. It was no surprise to us – despite hoping against hope that he was merely a late developer, we worked our way through the lengthy diagnosis process with a sense of inevitability.
There’s a saying that if you’ve met one child with autism, you’ve only met one child with autism. Ain’t that the truth! Here’s how it affects my son.
He was a late talker (non-verbal til 4) but he talks fluently now. Sometimes, his verbal communication is perfect – he can tell me what he is feeling (cold, hot, hungry, thirsty, poorly), where he wants to go and or what he wants to do. If he is very tired or stressed he uses echolalia (repeating phrases from and at other times, he shouts out random words and noises. He’s also been known to sing very loudly in shop queues (he does have a great singing voice though).
He can read, but to the level of a much younger child and, with support, he can do basic mathematics. He can more-or-less dress himself and manage the toilet (though he needs reminders to use loo roll, wash hands and flush the chain). He doesn’t have severe sensory issues, but if he’s feeling very anxious, he’ll ask me to cut the labels out of his clothes (on other days, he doesn’t notice them at all). He can ride a bike and a scooter, loves playing at the park and bouncy castles.
He has very limited road safety awareness and if he did get lost and you found him, he would tell you where he lives: “At home”. For a long time, if you asked him who he was, he’d say: “I’m me”. He loves going for walks in the countryside near our house – one day he spotted a white cottage on a hill and asked me if we were in Wales (we were five minutes away from our house). And he doesn’t believe me when I tell him that his Grandma is my mum. He calls me a liar. Woe betide anyone else who is called Christopher. That’s not possible. Because he is Christopher. There can only be one!
Blessed with a fabulous sense of humour, he has excellent comic timing and he knows if something is funny, even when he doesn’t get the joke. But ask him a direct question and he’ll search my face with a beautiful smile, waiting for me to prompt him with the right answer. If he’s feeling threatened, he’ll say, “I don’t want to deal with this” and on a really bad day he’ll burp continuously until I leave him alone. At times like this, he is using behaviour to communicate and the message is clear: “Back off”.
He loves taking ‘selfies’ and making funny videos with me on my iPhone. Then he wants me to repeat the exact same scenario in real life over and over again. If I get it slightly wrong, he’ll shout at me and call me an idiot.
He hates the word, “Goodbye” so we have to say, “Over and out”, otherwise he can get very upset. Of course, this is an issue we must address, along with many others. But you have to choose the right time and you can’t deal with all the issues at once. He loves a family cuddle and if his Daddy’s not at home, he’ll ask me to get his Dad back now. One day he told the staff at his special school that, “Daddy has left us”. (Daddy was at work).
He loves listening to pop music when I’m driving the car. When we get to our destination, he has to listen to the end of the song before I turn the engine off. If he hears just one note of the next track, we have to listen to the whole thing. He knows this is a problem and shouts at me to turn the engine off at the exact moment. I’m now an expert at judging the distance of my journey in relation to the duration of each track on his favourite CD.
Eating is an issue. Despite having a restricted diet, professionals have told me that it’s not bad compared to many autistic children. A small success, such as getting him to eat jam on brown bread instead of white bread, is a big deal. I actually achieved that this week and patted myself on the back. That night, as he was falling asleep, he said: “I want my jam on the blue bread Mummy” (the white bread he likes comes in a blue bag). Two steps forward, one step back!
He loves a story, especially if he’s not the one who has to read it. And if I read anything in a way that makes him laugh, he’ll expect me to do it exactly the same next time. And every time after that.
He goes to a special school, sees a specialist dentist and optometrist and requires longer appointments at the doctors. I live in fear of him having an accident or being seriously ill, as so much planning goes into the most routine appointment.
He’s funny, gorgeous, loud, infuriating, draining, affectionate, clever, cute, disadvantaged and extremely vulnerable.
He enjoys life and lives in the moment. We accept his diagnosis and don’t try to change him. He’s very lucky in lots of ways and leads a good life, with support. But make no mistake, he is disabled and he will need support for the rest of his life. When someone recently suggested that he would grow out of this, I had to go in another room and count to 10. It’s hard enough coming to terms with the future, without people questioning it.
This is just a tiny snapshot of how autism affects him, and us. He has changed and continues to change, but autism is a life-long condition. We know that. But it’s difficult to explain it to people, because every child is affected differently.
If you’re reading this, you will have learned a little bit about how autism affects Christopher and our family. If you know someone living with autism, their story will be completely different to mine.
But you’re one step closer to understanding that autism has a significant effect on the lives of people dealing with it, and that’s a big step in the right direction.
Over to you
What does World Autism Awareness mean to you? Do you have a child with autism? How does their autism affect them? And what coping strategies do you use?
Alison is a Freelance Copywriter in Milton Keynes offering a range of services for small and large organisations in MK and across the UK. For further information visit www.mkwordstudio.co.uk