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 detective with Asperger’s Syndrome 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. You can see my book review here:
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.
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. They show us the lives of others and enable us to enter into the sufferings and joys of a stranger.
Autism is a hidden disability. You can’t tell by looking at someone whether or not they’re 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.
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 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 in 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 grow in our relationships and develop truly inclusive communities.
So if you catch yourself tutting at that flustered mother in the supermarket whose child is having a tantrum, please be kind. She might be an ineffective parent. Her child might be spoilt and disobedient. Or it might be that the child is completely overwhelmed by the sights, sounds, smells and busyness of the shop and screaming is the only way they have to express their pain.
Awareness isn’t enough. We also need a change of heart.