Illustration: Anne-Christine Guy
Rhi réside au Royaume-Uni. Depuis son diagnostic en 2015, elle décrit son expérience de l’autisme sur son blogue Autism and Expectations. Elle a gentiment accepté de partager avec nous certains de ses billets qui touchent notre thème du temps. La poésie de l’écriture de Rhi est telle que nous ne nous sentions pas de taille à vous en offrir une traduction satisfaisante. Ainsi, nous nous contentons de republier les versions originales.
Pour d’autres textes de Rhi : Autism and Expectations
Memory and Me
Publié le 15 juin 2016
My brain is letting me down. It’s ageing. I didn’t agree to this. I didn’t sign up for it.
You can give me laughter lines. I’m happy for my nipples to swing like clock pendulums. You can grey my hair and fuzz my chin, but for the love of all that is holy, please leave my memory alone.
I used to be able to glance at a room and that was enough. I would remember where everything was. I’d already built a map, floor plan, wall plan. I already knew where the sockets were, where the cracks lay, where the carpet didn’t meet the corner properly. It was minimal effort on my part.
But now I have to look. I have to take note. I have to remember.
I used to have a world without diaries and planners. I hate lists. I loathe making them. I loathe looking at them. It wouldn’t matter if it was a year in the future, I used to remember the date and the time. My plans weren’t just for today, they overlaid everything.
The first time I forgot an appointment I was shocked.
“It’s ok. It happens.” I was told. But it didn’t. It hadn’t. It had never happened before in my entire life. I did not forget things.
As time went by I forgot more and more. My memory is still much better than average, but it’s nowhere near what it was. I used to be a sponge. I used to just soak it all up.
Now it feels like my sponge is full. I have to carefully squeeze it so as not to let memories fall out when I let new ones in.
What that has meant for my autism is more effort being put into the already over-laden process of processing.
It’s meant more exhaustion. It’s meant more anxiety as it makes going to new places harder than it once was.
The effect of normal memory deterioration on my life is stark.
Perhaps it was the beginnings of really needing some support.
But at the moment my memory is still good. It still has capacity.
I know this is only the beginnings. I know there will be more. I know that as I age I will lose more and more of one of my biggest crutches.
Take my waist.
Take my teeth.
Take my bladder control.
But please leave me my memory.
Children and Adulting and Autisming
Publié le 14 avril 2017
There is a freedom that comes with having children around. It starts with their lack of expectations. Those big, round eyes don’t have an idea of who I should be, they haven’t developed those advanced skills of pre-conceptions and pigeonholing.
Children love it when you listen. They love it when you try to answer their questions. They love honesty. They love fascination.
Children love all my best traits.
Yesterday we had a family day out to an aquarium. When I told people we were going, some nodded a knowing nod and pigeonholed it as “something for the kids to do”.
Because it is. My children love water, they love fish, they love lights. And so do I.
There are many things that I do, because I’m autistic, that are easier to get away with when you have children around. I love to sing. I love to make up mindless doggerel about whatever it is I’m doing, and turn it into a ditty as I wander. It’s a great way to keep my mind focused and for staving off tendrils of distraction that can lead to over analysis and worry.
I try not to sing when I’m “adulting”, but when the children are there? Well, I’m probably just an enthusiastic mother, doing it for them. They find it hilarious, they join in. If I stop then they urge me to do more. I live in the land of song, it would be rude not to.
And so I sang my way around the aquarium, and I ran with them from exhibit to exhibit. When a mother apologised for her son’s enthusiasm, as he flapped his arms outside the shark tank, with a gentle, “He’s a little overexcited”, I grinned at him and did the same, saying, “He should be! It’s exciting!” and we all smiled.
I pointed at all the rays, and stared, eyes-unfocused, at the jellyfish tank. I found all the poison-dart frogs, and I soaked up their venomous skin with my eyes.
We took turns skipping from tank to tank, my husband smiling proudly at our joy in everything. We shared facts and loves. We made fish noises and went round and around the shark tank looking for the Moray Eel.
The otters were asleep, so we did some otter whistling to assure them that they were right to hide. We curled our fingers like seahorse tails, and reminisced about finding mermaid’s purses on the beach at home.
As we left, I felt like skipping, and so we did, all the way to the car.
A lot of my autism is enthusiasm, passionate and raw and immediate. Containing it takes some effort. It’s exhausting. Not letting my brain focus on singing, means it looks for other things to keep it occupied. It will focus on variables and risk analysis, and catastrophising, instead of connecting and interacting with the world.
We all need to let our fascination out at times, children are a parent’s secret weapon against other adult’s judgement.
I’m working towards being so secure in myself, that I won’t need them around to be me anymore. It is my plan. That and being an old lady who wears purple and does what she damn well pleases. Those futures fill me with joy.
I have spent a lifetime learning to contain all my best bits, and it has left me isolated and confused. It’s time I gave the world a chance to judge me properly, not on how well or poorly I mask, but on who I am. Warts and poison-dart frogs and all.