The Days Autism Steals

My beautiful boy is finding life quite difficult. He demands attention and is hurt and baffled when you say you’re busy, or ‘that conversation is finished now’ because you have been going round and round in circles, repeating the same conversation for what feels like a decade… and he doesn’t understand when you keep explaining, and will never be able to understand, so you know this can only be a circular conversation which, to anyone without autism, is utterly pointless and slightly soul-destroying. But you remind yourself that he’s just trying desperately to make sense of the world. He doesn’t understand anyone’s feelings except his own, and his own are sometimes beyond him, like when he just cries and shrieks, becoming a 5’4″ toddler, which breaks your heart because he’s genuinely distressed. Yet you know the world is not kind to giant toddlers so you remain firm and try to treat him gently, but with immovable firmness (because if you give a child with ASD an inch, they sprint off into the distance before you know it).

This all makes my head spin. I have to bite my tongue sometimes, especially when his conversation is implying where I could improve as a mother, or where I went wrong three years ago, on a Tuesday, when it was raining in the morning, but not in the afternoon…

“Do you remember that, Mummy?” He asks.

“No, Prince, I don’t. Look, I’m just trying to get the carrots on. Excuse me, please.” Because we have a tiny, galley-like kitchen in our new house. I’m trying not to be short with him, but we’ve been having the same conversation over and over since he got in from school (school, glorious school – we were anxious to try it) and it’s the end of the day, and I’m tired, and this conversation is sapping my patience.

“But don’t you remember the rain, Mummy?” Somewhat astonished at my lack of brain power.

“No, darling.”

“Do you remember that you told me off in a cross voice, Mummy?”

“No, dear, I don’t.”

“I was so upset, Mummy!”

“Yes, dear.” Pursed lips, trying to be civil. Trying to do the tea. “Fluff, let Chip have a turn, too!” In response to noise from the other room.

“And when you said we could go out but then you changed your mind and we couldn’t go, do you remember, Mummy?”

“I’m sure there was a good reason, darling, I really don’t remember. It was a long time ago. Mind out the way, this is hot.”

“But I remember, Mummy.” Looks at me, incredulous at my evident lack of mental faculty and doleful at the recently-recalled trauma of the time when Mummy slightly raised her voice three years ago and changed the plans without due notice.

I know. Shocking behaviour. I plead guilty, m’lud.

Today, I am tired. Today, I have had a tummy bug and it’s drained me. Today, I snap at him. I tell him to please stop being so self-obsessed! A very stupid thing to say to a boy with autism.

He looks at me in baffled, wary surprise. Pauses, then, “Can I have my tea, Mummy?”

“Not yet, Prince, it’s not yet ready.”

“But I’m hungry.”

“I know, but it’s not ready yet. Go in the other room and help your sister to set the table.”

He goes in the other room and starts moaning piteously, dragging his hand on the table as he walks round and round it.

“Hokay…” I say, mouth-pursed. Out comes the slightly raised voice, “Just go and wait upstairs until dinner is ready.”

At which point he runs upstairs, slams his bedroom door and starts having a meltdown. Not an all-out meltdown, but screaming and shrieking and throwing stuff. And then it grows quiet. I carry on with the tea, and then Chip comes and whispers, “Mummy, he’s written you a note.”

It reads (in his very cute handwriting that always reminds me of Christopher Robin’s writing in the pictures of Winnie-the-Pooh): ‘I will never get away in life unless you let me explain and show you how thease things happend’

First, I was impressed by the spontaneous writing. It’s the first time I can think of where he has spontaneously written anything. Second, I was impressed by his handwriting and spelling (even if his little sisters are far advanced of this, for a boy with ASD & learning disabilities, it’s very good). Third, I was impressed by the fact he calmed himself down and tried to communicate something, even if I’m not exactly sure what he means. He has a tenuous grasp of the English language and uses words that don’t mean what he wants them to mean, but he uses them confidently, which is probably half the battle to being understood. He also expects me to be able to anticipate his every emotion, and respond appropriately. Like a Stepford Wife. Or a robot. And he is totally baffled by anyone else’s emotions. In other words, if I don’t do what he wants, he thinks it’s because I’m plain old nasty – and you can’t argue with him, because he genuinely can’t imagine that someone else’s emotions and desires might be different from his own.

Altogether, it makes me sad, because his anxiety over what is actually non-existent, or trivial, becomes life-controlling, and impacts everyone in the family. We don’t do anything if ‘it might upset Prince’. The lives of five people are dictated by one of them (and to a lesser extent, his possibly-Asperger’s sister, who had a screaming fit at the head teacher today because she wanted to do something). He can’t just be a kid like other kids. We can’t go to the park, because he’s obsessed with CCTV and thinks if there are cameras, they must be watching him, etc., etc., etc. Autism doesn’t let him have a day free from anxiety. Autism makes every day filled to the brim with anxiety. I hate it when this happens. I want to make it better but – such is the nature of the intractability of autism – I can’t.

Some days, autism steals everything.

There was a moment of bright relief: during our dinner time bible discussion (he eventually agreed to come and sit at the table, after I asked him, gently, patiently, a dozen times) I asked all three what they thought ‘Christ’ means. The girls gave me silly answers. Prince, who didn’t ‘get’ the silly answers, said, “It means the king.” God bless ‘im. Sometimes autism makes him get straight to the point.

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