April is Autism Awareness month. I think we need to redefine what awareness means. Better yet, let’s move on to acceptance. Autism acceptance. Most people have heard of autism these days. They’ve heard of it, but they might not know what it really means. What it means to live with it, or be accepting of it. What it means to understand it. This needs to change, for all our sakes.
Here’s what I know. I wasn’t going to say anything, and just let April slide on by, but then I realised that the more I hear about those living with autism, the more I understand. The more I support neurodiversity. The more I want to know. And maybe it can be this way for others, too.
So here are some snapshots of what living with autism is like for us:
- Every weekend we face upheaval. The upheaval of routine, the uncertainty of change, and anxiety for all of us. Today (Saturday), my 6yo ASD son was up at 6.30am (not too bad), and went downstairs on his own. In the past we used to disconnect the wifi and hide the remote and the iPad, but he would just reconnect everything, climb the bookcase looking for the remote, and hack the iPad passcode (6 times so far), so we don’t bother anymore. This morning he climbed onto the kitchen counters, busted into the not-so-secret chocolate stash and ate it all. He hid the wrappers underneath the sleeping cat. Although he knew that later that morning we’d be going to the cinema, he still resisted getting dressed by kicking, screaming, and punching the wall or hitting himself in the head repeatedly. We finally got him into the car and he pestered his 3yo sister the whole way, seemingly ignoring my telling off. At the cinema, I had to hold his arm (as well as the 8 month old) to keep him from running away. He broke free and ran to the appropriate screening room ahead of us. During the movie, he jumped up and down with excitement, and ran up and down the row, couldn’t sit still, climbed over the chairs, but the joy on his face was catching. The theatre was nearly empty and it was an autism-friendly screening so I felt comfortable letting him be. During an emotional scene, he kissed his baby brother, assuring him it would be ok. After it was over, he took off without waiting for us. In the car, I asked him if he’d like to own the movie when it came out on DVD. He uncertainly said yes. Why watch it again though if you’ve already seen it? At home, he played outside with some other kids living on our street. Playing is difficult. He doesn’t understand the jokes, or the teasing. They’re bigger and faster, and this frustrates him. He can’t control how they play, and this enrages him. His birthday party invites have dwindled, but he insists that if he gets an ice pop, his friends should get one too. He raids the freezer to pass them out without asking, and then gives them his crisps too. When he falls down and scrapes a knee, he screams a bloodcurdling scream, refuses to come near me and yells, ‘No no no no!’ over and over. Sometimes he tells me he hates me when this happens. He doesn’t mean it. He’s in pain and doesn’t know how to handle it. It’s difficult to assess how hurt he is, and sometimes he needs to be held or he’ll run away. He hates being held. Twenty minutes later he’s calm enough to assess the damage: a simple scrape. It cannot be plastered. He hates plasters. Bedtime is a careful dance between us. A mix of coaxing, encouragement, and some firm demands. Sometimes it ends in meltdowns for all of us anyway. Upstairs and in bed, he moans loudly for 30 minutes. He hates the feel of his pyjamas, but nothing is a good solution. He won’t take them off, he won’t exchange them. He won’t stop moaning either. He eventually quietens and falls into a heavy sleep to the sound of blaring white noise. Tomorrow, he will hate getting dressed. He will refuse to put on his shoes. He will play outside and he will get annoyed at the other kids. Bedtime will be a nightmare. And it’s bath night.
- At the playground one day, everyone stares as my son careens around wildly, tripping over his own feet, screaming wildly (no one is sure whether he’s upset or happy, but I know he’s just blowing off steam). They all stare as he fights me when I try to speak to him about taking turns, about not walking backwards up the slide, when I yell at him for smacking his sister. They stare as he screams at me when I say we have ten minutes left before we have to go, when he falls and hides from me, when I yell at him again for trying to leave by himself through the gate. No one seems to notice how he helps the small girl up after she falls, how he pats the toddler on the head gently and bends down to smile at him, how he feverishly hugs a newfound friend. No one sees him put all his rubbish dutifully in the bin, how he makes his baby brother laugh playing peekaboo, or how he helps me find his sister amongst the crowds.
- At home, he talks tirelessly about Minecraft and Terraria, and lists game strategies, character features, YouTube celebrities and describes the landscapes of different levels. Any interjections you make might as well be made to the cat because he sweeps over them with yet more information. His encyclopaedic knowledge of the games is astounding and endless, yet he applies this knowledge to real world physics and math in creative and brilliant ways. His logical solutions to certain problems are both simple and unexpected and most of the time make me laugh with a mixture of surprise, pride, and genuine humour. His math skills are phenomenal for a 6yo. His reading is equally good. Two years ago, his P1 teacher wasn’t sure he knew how to count to 20. At home, we discussed negative numbers, fractions and decimal points. His teacher didn’t believe me. At home, my son cries that he hates school, doesn’t want to go, because I asked what he had for lunch that day. He hates wiping his face after dinner, dislikes using utensils and despises bath night.
- At school, the teacher apologises for having had to physically restrain him during a meltdown because he misunderstood how to queue properly. He gets suspended 4 times in a month because his frustration levels peak and he hits out at other students, at staff. He bites a girl by accident and is asked to leave for a few days; the girl’s mother posts publicly on Facebook that he’s a ‘wee shit’, and her friends and family (some of whom also have kids in the class or at the school) call him an asshole and a bastard, saying he doesn’t belong there. Her husband threatens to go down to the school in an ominous way, suggesting a grown man might be considering thumping a 6yo special needs kid. I read all of this and alert the principal to this form of backhanded cyberbullying, but nothing is done. He panics during oral questions because his mental processing of the question takes longer than it does other students. He also won’t write it down because his handwriting is poor and he finds it difficult. His classroom assistant is an angel, and we fought for almost a year to get him this help. She understands him, steps in before he implodes, reads his body language and recognises his anxiety. He is calmer now, and participates more readily. He is sweet and kind and he worries when she’s off sick. He knows her favourite colour, her favourite food, and knows how to make her smile, but he ignores her morning hello. Especially on a Monday.
This is autism. And there’s nothing really to see here but a lovely little boy who loves Minecraft and babies and, given half a chance, would probably ship his sister off to live with Grandma. (He’d immediately complain about missing her.) Accepting him means accepting all of him, accepting the autism and the little boy as one indistinguishable entity, and all that’s in between. It’s part of what makes him special, but it’s not all of it. It might be what makes him different, but not less. And that’s all there is to it really.