Source: The Drum
By Elly Duncan
18 June 2020
- Author Kay Kerr rewrote her novel after being diagnosed with autism as an adult
- Advocates are calling for greater representation of autism in literature and pop culture
- They say the diversity of people on the spectrum needs to be considered
For Kay Kerr, it was a trip to New York City that was the tipping point.
“I was completely overwhelmed by the sensory input from that city and I didn’t sleep for three or four days.”
When she got home, she researched some of the symptoms she’d been feeling: sensory overload, exhaustion, reaction to lights. The pieces started to fall into place.
“That’s when I found out about autism and women on the spectrum who were diagnosed at a similar age.”
It’s not an autobiography, but Kerr says her new book, Please Don’t Hug Me is about “as personal as it gets”. After her diagnosis, she rewrote the first draft and with it, the main character, who became an autistic woman.
“When I look back at the first draft of the manuscript, she was definitely autistic. I just didn’t realise that at the time,” she told The Drum.
With her diagnosis, Kerr says she had the “language and framework” to finally understand years of frustration she experienced as a teen.
Motivated by her own experiences, she is now calling for greater representation of autism spectrum disorder across pop culture, particularly in literature.
“I just think that the understanding of autism is narrow because the representation of autism is narrow.”
Autism in pop culture is growing, but there’s still work to be done
Autism Awareness CEO Nicole Rogerson noted that in recent years there had been a significant increase in the number of autistic characters in popular culture — like The Rosie Project book series, or in TV shows like Atypical, and The Good Doctor.
“Whilst some of these characterisations are more accurate than others, having these reference points does help the wider population understand a little more about autism,” she told The Drum.
Kerr says the first time she read a book with an autistic woman as a protagonist, she “cried her way through the entire thing”.
“Having so many of my own thoughts and feelings reflected back was a hugely affirming experience.”
Ms Rogerson said literature that included representations of people on the spectrum also helped to bring the community of people with autism — and their families — together.
“Whilst our stories are all individual, our experiences are often common. Bring on more literature about those people and families, because they are fascinating.”
Why books need to reflect the diversity of the spectrum
Kerr says it’s important that literature reflects all the “strengths and challenges” of being autistic.
“Autistic people are not a monolith, and the spectrum of experiences is vast,” she told The Drum.
For her, diversity meant including a broad range of society: those who are non-verbal; those who require high support; transgender and non-binary characters; inter-generational autistic families as well as Indigenous Australians and people of colour.
She’d like to see it not just in characters or plotlines, but in the authors themselves.
“I think it’s important for people who exist within those identities and communities to tell those stories,” Kerr said.
First People’s Disability Network Deputy CEO June Riemer told The Drum more needed to be done to show the experience of Indigenous Australians diagnosed on the spectrum.
Ms Riemer, who has worked alongside Autism Australia, would like to see more books, videos and novels that include autism, particularly in-language.
“For very remote areas, English is the third or fourth language for many,” she said.
“If all the literature and novels and books are from the Anglo-Saxon focus, for a young person or a family, they can’t self-identify.”
She said more information and education was essential to ensure Indigenous Australians living with autism were given every opportunity to succeed — and that their carers were suitably supported.
“You don’t see a lot of work around the autism spectrum, and what that means,” Ms Riemer said.
Ms Rogerson said it was time to shift the image of autism away from something that only affected children, commonly white children and boys.
“Autism is a very wide spectrum so people’s experiences with it are very varied.
“The old saying goes, ‘If you have met someone with autism, you have met someone with autism.'”
Watch Author Kay Kerr on representation of autism in literature on the Drum here