Autism Awareness and the Power of Stories

I’m passionate about the power of stories to transform attitudes. That’s why they’re used by politicians, religious leaders and advertising moguls when trying to influence our choices. But a good book goes much deeper than this. It allows us to immerse ourselves in another person’s reality, inhabiting their mind and their world for a few treasured hours with no intermediary but a piece of paper.

Novels stimulate our imaginations. They show us the lives of others and enable us to enter into the sufferings and joys of a stranger. Whether you are a writer or a reader, fiction offers the possibility of going inside the Other to experience vicariously a little of the strange and wonderful and terrible thing it is to be human. That’s the power of story.

27 March – 2 April 2017 is World Autism Awareness Week. According to the National Autistic Society, there are more than 700,000 people in the UK on the autistic spectrum. People don’t grow out of autism. Autistic children become autistic adults. At one end of the spectrum, there are those with severe learning and communication difficulties. At the other end, people with Asperger’s Syndrome suffer from high anxiety and sensory overload triggered by social situations.

It’s encouraging that autism is more widely understood than it used to be. One sign of this is that writers and programme makers are recognising the unique outlook and experiences of autistic people and think these are worth portraying and celebrating.

A few examples:

  • The A Word, a family drama with autism at its heart, was aired on the BBC last year.
  • The Undateables on Channel 4 often features singletons with Asperger’s or autism.
  • Benedict Cumberbatch’s portrayal of Sherlock highlights the autistic traits of Sir Arthur Conan-Doyle’s detective, and then there’s Saga Noren, the autistic detective from The Bridge.
  • Something of a literary sub-genre is developing, instigated in the public’s mind by the excellent Curious Incident of the Dog in the Night Time by Mark Haddon.
  • The Reason I Jump by Naoki Higashida, depicts the experiences of a 13 year old autistic boy from Japan. The book includes an introduction by the novelist David Mitchell who has an autistic son himself.
  • Romantic comedies such as The Rosie Project and The Rosie Effect by Graeme Simsion introduce a man with undiagnosed Asperger’s Syndrome into the world of commercial fiction.
  • My personal favourite at the moment is Schtum by Jem Lester. It’s the heart-breaking account of the struggles of a father and grandfather to obtain the right school placement for ten-year-old, non-verbal, Jonah.

These stories depict in varying ways the lives of autistic people, giving a voice to those who find communication with others fraught with pitfalls and failures.

And that’s why I wrote my debut novel, The Girl at the End of the Road. I wanted to give a voice to those who find it difficult to tell share their experiences. Ironically I prefer to hear disabled voices directly, rather than having others speak for them, so it was with some trepidation that I introduced a woman with Asperger’s into my novel. My only justification is that most of the stories portraying autism depict men on the spectrum rather than women. Thus in literature, as in life, autistic women are doubly overlooked.

Autism is a hidden disability. You can’t tell by looking at someone whether or not they are autistic. This in itself can fuel misunderstanding and a lack of compassion. Far more boys than girls are diagnosed, possibly because girls are better at masking their difficulties. They also present differently from boys, and professionals don’t always adjust their diagnostic criteria accordingly. As a result autistic women and girls have a higher mountain to climb to receive a correct diagnosis and support, and often end up with mental health issues as well.

So, how might a woman make the most of her life while living with Asperger’s?

Reluctant to narrate the story as if I were an autist myself, the novel unfolds through the eyes of high-flying financier, Vincent Stevens. He has lost everything in the economic crash – smart London flat, trophy girlfriend and champagne lifestyle. Humiliated and depressed, he returns to the backwater Suffolk village of his birth to live with his parents. He wants his old life back at any cost, but when he meets Sarah, an enigmatic girl from his past, everything he believes and values is thrown into question.

I’ve worked with autistic teenagers and have had direct experience of the condition with a family member. I know it’s easier to remain fixed within one’s own limitations and expect the autist to change their behaviour rather than to enter into their world and change yourself 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 another step of imagination. It’s no accident that parents and professional use social stories to help teach autistic children the social skills they need to survive the neurotypical world.

Autism is a horrible disability, 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. Although evidence is inconclusive, certain character traits suggest that Amadeus Mozart, Sir Isaac Newton, Michelangelo, Charles Darwin, Lewis Carroll, Emily Dickinson, Albert Einstein and Andy Warhol might have been on the spectrum.

‘Autism’ literally means ‘selfism’. We live in a culture that values success, appearance, achievements and possessions above all things, 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. 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, that we can truly grow in our relationships and develop truly inclusive communities.

 

This post is brought to you by K A Hitchins.

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The Secret Power of Stories

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I have this quote from Ben Okri pinned up next to my desk. From being quite young I’ve used fiction as a place to find strength and understanding. Books have made me feel like I’m not the only person to ever go through something and at different times of my life different stories have resonated with me. From wanting to be Nancy Blackett from Swallows and Amazons when I was nine to reading and re-reading Jane Eyre when I was a teenager I’ve always felt that books have helped me find out who I was and who I wanted to be. As I got older I found a role model in Harriet Vane in Dorothy L Sayer’s novels who taught me that you can survive terrible circumstances (although fortunately I’ve not had to endure being wrongfully tried for killing my lover) and comfort from Jojo Moyes’ Me Before You after being seriously ill.

To be honest I’ve always treated my fiction addiction as a bit of a guilty secret but I’ve now started to realise that not only am I not the only one who finds understanding in the pages of a book but that it can actually be good for you. Recent research has shown that reading for pleasure can “increase empathy, improve relationships with others, reduce the symptoms of depression and the risk of dementia, and improve wellbeing throughout life.” The NHS is now prescribing books for adults and young people with mental health issues and for people with dementia and their carers with the selected books available in surgeries and libraries.

Then a couple of weeks ago I went to a conference called ‘Storyknowing’ which made me see that stories are a far more powerful tool than I’d ever realised. Storyknowing was about storytelling and adolescent mental health. Storytellers, researchers and people who work with young people came from all over the country to talk about their experiences of using stories to help young people. A storyteller from Glasgow talked about a project which used stories and character creation with a group of persistent young offenders with the purpose of helping them to realise that they can change their lives and escape from the cycle of offending. Other people talked about writing memoirs about adolescent trauma and how traditional stories and folk tales can forge connections within a group of people suffering from mental health issues.

Keep calm and read a book

I don’t mind admitting that some days I don’t feel emotionally strong enough for realism, for literature that challenges and confronts. I get enough of the real world from my day job and watching the news. I want a book that allows me to escape from all of that because all too soon I’ll have to put it down and face the realities of life again. But it turns out that when my Mum said ‘all of that reading isn’t going to do you any good’ she wasn’t right. Stories can give us the strength to face the challenges that life throws at us. And if readers find something like that in my books then I’ve done my job well and I’ve reckon that’s more important than great sales rankings (although let’s be honest, they would be nice too!)

If you’d like to read more about the benefits of reading for pleasure click here.

 

This post is brought to you by Alys West.