Who Tells Your Story?

by Nanny Aut

The other day, I was watching Hamilton again (I love musicals) and the phrase ‘Who tells your story?’ hit me like a ten ton truck. Because, for most of my life, the answer has been ‘other people’. 

And this is true for so many autistic people – even before identification. That chorus of voices from the past ‘No one wants to know what you think.’ That fear of being visible, because you are only safe from bullies if you fly under the radar. The feeling that I don’t belong, that I don’t deserve to take up space, that I am an unwelcome intrusion.

These are real voices from people I allowed to tell my story. These weren’t imagined incidents. I was explicitly told that I wasn’t welcome, I shouldn’t intrude, that it wasn’t my place to have an opinion, that I should be grateful to be allowed to stay quietly on the fringe, that I deserved to be bullied for being different.

And those old voices still hold such power for me, and for others. Even though autistics voices are emerging in research, far too often non-autistic voices are still platformed, STILL allowed to tell our story. 

And it’s NOT our story. They are all other people’s versions of autism, told from their outside perspective. Slivers of autism, coloured by their kaleidoscope of assumption and bias.

That is all that is possible with observational research – the kind of research that has dominated the Autism Field for far too long. It isn’t the real story – it can’t be – it can only be a sliver of the whole, coloured by personal bias.

This is why autistic lived experience matters – not just one personal story but thousands. Each adding an authentic layer of understanding. It’s varied, it’s complex, it’s diverse. So many factors go into a life, not just a neurotype, and every factor has a part to play in how that neurotype presents. It’s not something that can be neatly boxed and listed under four or five diagnostic markers in the DSM.

No wonder traditional researchers want to silence us. We’re living proof that their simplistic definitions don’t work. That their assumptions were incorrect. That their life’s body of work has little value in the face of what is now emerging as autistics step up and speak for themselves.

Autistic advocates and educators shine a light on their arrogance, proving over and over that our knowledge about autism is often superior to theirs – disproving their assertion that we’re defective or ‘less than’, incapable of understanding or speaking for ourselves.

When autistics step up and tell their story they strip away the comfort blanket of false narrative. The false narrative that allows those in power to sideline us, to deny us basic human rights like access to education and employment, to live in an environment that doesn’t negatively impact our health on a daily basis.

It’s hard to admit you were wrong, to humble yourself and listen when you’re used to holding the floor. It’s hard to recognise the harm you caused when that absolutely wasn’t your intention.

It’s hard but essential if you genuinely wish to support autistics over promoting your own career.

We need boundary spanners to change the narrative – far too many of the majority neurotype will only give credence to voices from their own neurotype. However loudly autistics speak, however many of us speak out, we can be and often are, ignored by mainstream Autism Research. 

It’s like the old trope of a woman voicing an idea in a meeting to absolute silence, then having the same idea greeted with a round of approval when a male colleague repeats it.

Too many aren’t willing yet to grant autistics a place at the table. So those who do have that privilege to sit at the table and be heard – tell OUR story, not your version of it. Amplify OUR voices, not your interpretation of what we’ve said. Fight for our right to be at the table and fight to make space for us.

Who tells our story matters. It changes lives.