AUTHOR BLOG: Imagining the autistic person’s world

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1 – 7 April 2019 is National Autism Awareness Week, a nationwide effort to promote awareness, acceptance and appreciation of everyone on the autistic spectrum, helping them achieve the highest possible quality of life.

According to the National Autistic Society, there are more than 700,000 people in the UK on the autistic spectrum. At one end of the spectrum, there are those with severe learning and communication difficulties. At the other end, people with Asperger’s Syndrome can appear indistinguishable from the general population, often successfully masking their sensory overload and the anxiety which is triggered by social situations.

And this can be part of the problem. Autism is a hidden disability. You can’t tell by looking at someone whether or not they’re autistic. This can fuel misunderstanding and a lack of compassion.

I’ve worked with autistic teenagers and know from personal experience that it’s easier to remain fixed within one’s own limitations and expect the autistic person to change their behaviour rather than enter into their world and change your approach as a result. But autistic people can’t enter the neurotypical world without help, and to help them we have to connect on their terms. It’s a step of imagination.

It’s no accident that parents and professional use social stories to help teach autistic children the skills they need to survive in our hectic social world. But this act of imagination can’t be one way. If we are asking those on the spectrum to use their imaginations through social stories to enter into the neurotypical world, then we need to use our imaginations to enter theirs. We need to imagine what it’s like to be constantly fearful of misunderstanding social nuances, of making a mistake and looking stupid, of finding certain noises, sights and smells unbearably distressing, of wanting to remain in a safe space where you have complete control over your activities and surroundings, and of feeling depressed and exhausted by the unpredictability of life.

A day in the life of an autistic person is a bit like the first day of a new job. Imagine that for a moment. Everything is unfamiliar. You are introduced to a bewildering number of new people. You wonder if you have dressed appropriately, whether you are making a good impression and whether you will get along with your new colleagues. You don’t understand the ‘in jokes’ and the hierarchies. You find yourself getting lost in the corridors as you try to navigate around the different departments. You don’t know who to ask when you don’t understand something, and bluff your way through conversations you only partly comprehend. You wonder if you are going to fit in and are anxious that people will think you’re not up to scratch.

At the end of that first day in the new job, you arrive home completely exhausted, either snapping at family members because your mind and emotions are frazzled or retreating to a quiet room to rest and regroup. At least with a new job, you know the next day will be slightly better. You’ll remember the names of some of your new colleagues. You’ll know the way to the toilets. Hopefully you’ll remember your computer password. Within a few weeks you’ll have got to grips with your new role and slipped into a comfortable routine of office banter.

But for an autistic person, every day is like that first day. However hard they try to control their environment and their social interactions, for them every day is different and the unexpected can happen at any time. The social rules they learned for one situation cannot easily be transferred to a similar yet different situation without causing misunderstanding, hilarity or upset. Every activity or conversation is a minefield to be negotiated. It’s no wonder that autistic children either blow up at the slightest thing when they get home from school or retreat to their bedrooms to spend the rest of the evening alone.

Autism is a challenge, but autistic people themselves shouldn’t be demonised or viewed in a negative light. Each one should be recognised as an individual, not lumped together as a collection of deficits. Without their unique take on life, their creativity, personal integrity, focus and intellectual abilities, our world would be a poorer place.

‘Autism’ literally means ‘selfism’. We live in a culture that values success, appearance, achievements and possessions above everything, a world where the drive for personal fulfilment and individual self-expression can sometimes end up imprisoning us in a self-centred community of one. Whether or not we are autistic, we can all suffer from selfism, seeing the world from our own limited point of view and feeling angry and disappointed when things don’t go our way. Let’s not judge those who are socially isolated through no fault of their own. It’s only by opening our minds and our hearts, making ourselves vulnerable to each another and using our imaginations, which we can grow in our relationships and develop truly inclusive communities.

The protagonist in Kathryn’s novel The Girl at the End of the Road is a young woman with high-functioning autism, giving insight into this oft-misunderstood condition.

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