What it’s like to live with autism: new simulation Auti-Sim gives mother a sense of her daughter's life
Thursday 07 March 2013
I spend a lot of time wondering what life is really like for my daughter, who has Asperger's Syndrome, a form of autism. Watching her navigate the day-to-day is one thing: comprehending the sources of her meltdowns and frequent distress from the inside is something else entirely.
So I am both fascinated and a bit worried by the prospect of finding out for “real” how she experiences day-to-day life, albeit via a computer simulation.
I am of course interested in anything that may help me to understand and support her better. However, having also been seen her bullied because of her eccentricities, I am concerned from the outset that this program, Auti-Sim, does not render her life experience as freakish or weird. So I feel very apprehensive as I download the software and click “play”.
At first I am staring into blue sky and bright, bright clouds that dazzle. It takes me a little while to get my bearings as I manipulate the arrow keys: every small movement seems exaggeratedly fast and my surroundings, lumpish and crudely-coloured, whizz by me. I tap more slowly and sit further back in my chair but the jerkiness doesn't alter. I start to get annoyed, then realise it's not me that's doing this, it's the settings. Or rather, it is me. It's the me the game is giving me. Already I don't like it. I feel out of control and uncomfortable.
As I progress unsteadily across a playground rendered in gritty dots, I become aware of a shouting in the background that is getting louder as I walk on. The children I pass have blank faces and bright red T-shirts that hurt my eyes.
Suddenly the shouting is overlaid with shrieks. They are like something from a horror film and make my skin crawl. From somewhere a malevolent voice starts reciting the alphabet in staccato tones. I want to get out of here. I've got a splitting headache and a sensation like sand in my teeth. I don't like what this is showing me. I don't want this to be my daughter's daily experience. I don't want to have to take this on board.
Auti-Sim was created by a team of developers at a Hacking Health event in Vancouver, Canada, earlier this year, in an attempt to simulate the hypersensitivity of autistic children.
After their initial demo attracted positive responses from many autistic people, they plan to extend it into a fully-fledged game, to boost awareness of the autistic experience.
I feel guilty as I shut it down and call for my daughter to join me, like I've set a trap that I'm now going to persuade her to step on. Grace comes in, ponytail swinging, a question in her face. I sit her down at the computer and explain that I've found a game that aims to show what it's like to have autism. I tell her I would like to hear what she thinks of it. I ask her if she would like to play it.
She nods enthusiastically and draws up a chair. I launch the game again and watch her watching the screen. Her expression of anticipation turns quickly to one of puzzlement and then distress. When the screaming starts she looks panicked and puts her hands over her ears and curls up in the chair. I pause it and she says: “I don't understand how you play this game.” No, I think, I don't understand how you play it, either. Out loud, I say that there isn't really a point, it's more about the experience, though it's possible to keep the noise to a minimum if you keep to certain locations.
Grace leans forward tentatively and presses play again. As soon as the shrieking starts she hits “mute” with such ferocity that the keyboard bounces a little on my desk. It turns out that once she's been told how the exercise works, she's very good at it. (This is true of many things.) She will only play it with the sound off, and only for a few short minutes, but in that time she gets us out of several nasty situations very quickly.
As the screen turns to static, a visual demonstration of meltdown beginning – “ooh that's scrinchy,” she says in tones that suggest familiarity with the concept – Grace hits reverse and gets us to the other end of the playground. “A shady nook where I can calm down,” she tells me.
And with that, she's done. “I'm feeling really wound up,” she tells me. “It just keeps going and it doesn't stop. I want to stop it.”
OK, I tell her. Let's stop it. Then I ask: was it useful?
“Yes,” she says. “I think it's useful because it makes you see how I feel when everything gets glitchy – when everyone is talking at once and it's getting me confused and my eyes can't keep up. People think it's funny to scream in the playground. I don't like it.”
Then she gets up and leaves for a quieter room. On her way out, she asks: “Why is it called a game, Mummy?”
I tell her I don't know. It doesn't feel like any game I would want to play. But then, I don't have to.
Sophie Walker's book, 'Grace Under Pressure: going the distance as an Asperger's Mum', is published by Piatkus.
This article was arranged with the help of the National Autistic Society, a charity which works to improve the lives of people with autism in the United Kingdom.
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