What it’s like to live with autism: new simulation Auti-Sim gives mother a sense of her daughter's life

view gallery VIEW GALLERY


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.

Life and Style
ebookNow available in paperback
ebookA delicious collection of 50 meaty main courses
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    Recruitment Genius: Web Developer - Junior / Mid Weight

    £15000 - £25000 per annum: Recruitment Genius: To support their continued grow...

    Recruitment Genius: Marketing Data Specialist

    £22000 - £25000 per annum: Recruitment Genius: They are the go-to company for ...

    Recruitment Genius: Search Marketing Specialist - PPC / SEO

    Negotiable: Recruitment Genius: This is an opportunity to join the UK's leadin...

    Recruitment Genius: Sales Administrator

    Negotiable: Recruitment Genius: This caravan dealership are currently recruiti...

    Day In a Page

    Greece debt crisis: What happened to democracy when it’s a case of 'Vote Yes or else'?

    'The economic collapse has happened. What is at risk now is democracy...'

    If it doesn’t work in Europe, how is it supposed to work in India or the Middle East, asks Robert Fisk
    The science of swearing: What lies behind the use of four-letter words?

    The science of swearing

    What lies behind the use of four-letter words?
    The Real Stories of Migrant Britain: Clive fled from Zimbabwe - now it won't have him back

    The Real Stories of Migrant Britain

    Clive fled from Zimbabwe - now it won’t have him back
    Africa on the menu: Three foodie friends want to popularise dishes from the continent

    Africa on the menu

    Three foodie friends want to popularise dishes from the hot new continent
    Donna Karan is stepping down after 30 years - so who will fill the DKNY creator's boots?

    Who will fill Donna Karan's boots?

    The designer is stepping down as Chief Designer of DKNY after 30 years. Alexander Fury looks back at the career of 'America's Chanel'
    10 best statement lightbulbs

    10 best statement lightbulbs

    Dare to bare with some out-of-the-ordinary illumination
    Wimbledon 2015: Heather Watson - 'I had Serena's poster on my wall – now I'm playing her'

    Heather Watson: 'I had Serena's poster on my wall – now I'm playing her'

    Briton pumped up for dream meeting with world No 1
    Wimbledon 2015: Nick Bollettieri - It's time for big John Isner to produce the goods to go with his thumping serve

    Nick Bollettieri's Wimbledon Files

    It's time for big John Isner to produce the goods to go with his thumping serve
    Dustin Brown: Who is the tennis player who knocked Rafael Nadal out of Wimbeldon 2015?

    Dustin Brown

    Who is the German player that knocked Nadal out of Wimbeldon 2015?
    Ashes 2015: Damien Martyn - 'England are fired up again, just like in 2005...'

    Damien Martyn: 'England are fired up again, just like in 2005...'

    Australian veteran of that Ashes series, believes the hosts' may become unstoppable if they win the first Test
    Tour de France 2015: Twins Simon and Adam Yates have a mountain to climb during Tour of duty

    Twins have a mountain to climb during Tour of duty

    Yates brothers will target the steepest sections in bid to win a stage in France
    John Palmer: 'Goldfinger' of British crime was murdered, say police

    Murder of the Brink’s-MAT mastermind

    'Goldfinger' of British crime's life ended in a blaze of bullets, say police
    Forget little green men - aliens will look like humans, says Cambridge University evolution expert

    Forget little green men

    Leading evolutionary biologist says aliens will look like humans
    The Real Stories of Migrant Britain: An Algerian scientist adjusts to life working in a kebab shop

    The Real Stories of Migrant Britain

    An Algerian scientist struggles to adjust to her new life working in a Scottish kebab shop
    Bodyworlds museum: Dr Gunther von Hagens has battled legal threats, Parkinson's disease, and the threat of bankruptcy

    Dying dream of Doctor Death

    Dr Gunther von Hagens has battled legal threats, Parkinson's disease, and the threat of bankruptcy