I stand quietly while you do somersaults on the bed as you aren’t being naughty, you are just trying to get your out of sync body under control.
I stand quietly by the toilet door every time you need to go, and come with you around the house, and sometimes even just across the room, because I know you can feel truly frightened when you are not near me.
I stand quietly at the supermarket checkout while everyone stares at you barking like a dog and blowing raspberries on my arms to cope with the buzzing lights.
I stand quietly while you tell the baffled shop owner that you are looking for shoes that feel hard like splintered wood because your skin can’t bear soft things.
I stand quietly when the attendant gives us scornful looks when I ask for the key to the disabled toilet because the hand dryer noise is too overwhelming for you.
I stand quietly while the nice old lady who lives over the street tells me you wouldn’t be like this if you had siblings.
I stand quietly watching the part-cooked dinner flush down the toilet as the smell was becoming too strong for you to bear.
I stand quietly as you diligently brush your teeth even though it feels like the toothpaste is burning you.
I sit quietly while you scream at me, trying to control the panic you feel because I gently touched your head when brushing your hair.
I sit quietly while the teacher tells me she knows about autism and that you are not autistic and asks if I would benefit from some parenting classes.
I sit quietly while the GP, the occupational therapist and the paediatrician agree how bad it is but say that there are no resources to support us further.
I sit quietly while you cry because your friends say you can’t play with them any more because you tried to change the rules once too often, even though it was only so you could cope.
I sit quietly watching you desperately try on countless items of clothing, searching your cupboards, feeling the textures, knowing that we will have to cancel your beloved horse riding lesson again because they all feel too bad to wear.
I sit quietly as you explain to me that you can go to no more birthday parties and no more clubs as people are just too scary when they are excited.
I sit quietly when my family tell me that you will grow out of it, you just need more routine and earlier bed times.
I sit quietly and rack my brains for something for you to eat as everything you try today makes you gag and wretch until your eyes stream with tears.
I sit quietly when an old friend suggests I would be better off putting you on the naughty step and taking away a beloved toy.
I sit quietly all night whilst you sleep on the cold wooden floor with your head on my leg as you are really poorly but the warm softness of the bed that should be a comfort is making you feel worse.
I sit quietly while you try to regain some kind of control over your body in a meltdown, scared and sobbing and writhing about, hitting yourself harder and harder and begging me to hit you as hard as I can too.
I lay quietly with my back to you as my smell makes you feel sick and although we both desperately want and need to cuddle, you can’t bear to.
I lay quietly beside you when you tell me that you are the wrong sort of special and the wrong sort of different and you want to die.
From April 2015:
It is one month until World Autism Awareness Week, so last night, rather than sit quietly googling for answers as I normally do, I wrote this open letter to share on social media. I wonder how many times people could ‘Like’ and ‘Share’ and ‘Tweet’ this over the next month? #istandquietly
I have had to learn to do these things quietly because my daughter needs me to. She is seven; bright, super funny, articulate, thoughtful and loving. She also has autism spectrum disorder. If you saw her on a good day, you’d maybe think she was a little shy and kooky. You’d maybe wonder why I am letting her wear flip-flops in the winter rain. You’ll never see her on a bad day as she can’t leave the house.*
She has severe sensory processing difficulties. A normal day exhausts her and when she feels overwhelmed, even a gentle voice trying to soothe her with loving words can be too much to process, making her feel crazy. She describes walking into a room of people as “like staring at the sun”. She’s incredibly empathetic but you may not realise as she feels her own and others’ emotions so deeply she can’t bear it, and so sometimes she has to just shut down. Forget about a hug. She is also desperately trying to come to terms with having a hidden disability that few people can understand.
This is just one story among thousands of different stories of autism, not everyone is like Rainman or like my daughter. I know it’s no great piece of prose but it’s from the heart. Thanks for reading.
And please consider a donation to the National Autistic Society – thank you:
*3 months of non-stop bad days and counting, not left the house since December 3rd 2014