Why we need to elevate the voices of autistic people – not talk over them

At Social we understand the power of people’s stories and as Senior Content Writer here I spend much of my time crafting and telling them. But when it comes to our own personal stories, who should have ownership? This is an issue for marginalised people all over the world and is something close to my heart when it comes to the stories of autistic people like my 8-year-old son.

Since autism was first identified less than 100 years ago, most of what has been written about it has come from neurotypical voices, whether that’s professionals like Hans Asperger and Leo Kanner, writers like Steve Silberman, authors like Mark Haddon or controversial figures like Andrew Wakefield.

Even with the best intentions, none of these people could truly understand or explain what life is like for autistic people, and neither can I. This year singer/director Sia’s movie Music was widely ridiculed and condemned for not only casting a neurotypical actress as the autistic title character but also for the way autism was portrayed. Her attempts to defend the movie were a PR disaster that only did more damage to the movie’s reputation.

That’s the danger inherent in trying to tell other people’s stories when you haven’t got that personal experience yourself. I’m a parent of an autistic child so I know more about autism than an average person would, through the research and reading I’ve done as well as from my own experience of our lives, but none of that makes me an expert on how he actually experiences that life.

I know that he has struggles with sensory issues, wearing ear defenders when he’s outside our home to protect him from unexpected loud noises, but I couldn’t pretend to know what that would actually feel like. And my understanding of what autism is for him doesn’t give me special insight into anyone else. As the saying goes: “if you’ve met one autistic person… you’ve met one autistic person.”

Elevating the voices of autistic people

On Twitter there’s a hashtag widely used by the autistic community, #ActuallyAutistic. It’s a reaction to how they have been talked about and talked over by neurotypical people and have had enough. Happily, their voices are now being heard much more, even those autistic people who are non-verbal.

Recently a ground-breaking documentary came out called The Reason I Jump. It’s based on an incredible book written by Naoki Higashida, who wrote it when he was just 13 years old. Higashida is non-verbal and also unable to communicate through writing, so used a method called ‘facilitated finger writing’ to work with his mother to write the book.

There’s controversy about this backstory, which highlights the complexities around this issue. However, it has become an international bestseller thanks to a translation from author David Mitchell and his wife Keiko Yoshida, who themselves have an autistic child.

The movie tells his story along with those of several other non-verbal children, attempting to simulate their sensory experiences:

Also out at the moment are several new books by autistic writers, including Drama Queen by Sara Gibbs, who was diagnosed when she was 30 and tells her life story with the same humour that she brings to her job writing for Have I Got News for You, Dead Ringers and other TV comedy shows.

It’s a hugely funny and yet important book that has been so helpful and informative for me as well as a lot of fun to read and having her perspective and insight is so valuable. There are parallels with her experiences and those of my son, but also many significant differences because they’re different people, and that’s a distinction that really comes out through hearing the stories of a diverse range of autistic people.

Women and girls have been historically overlooked in the story of autism so far and are still less likely to be diagnosed early on than boys. Another noteworthy book that’s just come out is Letters to My Weird Sisters by Joanne Limburg, who wasn’t diagnosed until she was 40 and has written to – and about – four female figures from history who were also considered ‘misfits’.

How to help without taking – and talking – over

As a parent to an autistic boy, I consider it my responsibility to read as much as I can to enable me to help and support him with whatever life has to throw at him. As a writer, my instinct has often been to write about my experiences, but I’ve usually held myself back from it because I don’t want to make it about myself. But that isn’t to say that ‘autism parents’ shouldn’t have a voice.

Another book I read recently is Autism: How to Raise a Happy Autistic Child by Jessie Hewitson. Books like these can be a minefield of bad advice, misinformation and negativity, focusing on the challenges and roadblocks, but this one is not only positive and helpful but also respectful, elevating the voices of autistic people alongside the professional advice.

That is the responsibility for neurotypical people, whether we are the parents of autistic children or not. Our world is still set up for us and we are still expecting them to cope or to change. Instead, we need to listen to them, hear their voices and elevate them so that we can all keep on learning and doing better.

That is why I am a trustee for I AM… Celebrating Autism in Greater Manchester, helping them in their mission to create opportunities and provide a sense of personal freedom and choice for autistic people in our community, working with and supporting a wide range of people, aged 10 years and upwards.

My son saw a draft of this blog while I was writing it and I explained what it was about and talked about the book Drama Queen. His response: “Maybe when I’m older I can write a book about my life.” I hope he does.