I remember the first time someone described autism to me. I was in a supermarket, young, and undiagnosed. I was told that being Autistic was like being “trapped inside your own little world”. I had gathered from overheard conversations that people thought I might be Autistic; this story made no sense to me. I wasn’t trapped in my own world. It felt like I was overbearingly connected to the rest of the world. The idea of autism remained abstract to me until I was in my mid-twenties, and then at the age of 26, I was officially diagnosed Autistic.
That first story came flooding back.
Was I trapped in my own world?
Was this why I struggled to connect with my peers?
Was the pain I experienced caused by the real world crushing in on my own little bubble from which there was no escape?
I came to blame my being Autistic for everything I was experiencing, and felt that if I had the opportunity, I would remove it, like a gangrenous limb.
It was only when I discovered a world of other Autistic people existing online that I came to realise that being Autistic was not the problem. It was the awful way the world treated Autistic people that was the problem.
I wasn’t trapped in my own world, I was trapped in a world made by and for people who did not have my lived experience. I was a prisoner within an ecosystem that existed to disadvantage people like myself.
So, through connection with other Autistic people, I rewrote my story of what it meant to be Autistic, and came to be proud of who I am. That’s what I hope to do for other people with the Re-Storying Autism Project. Let families and Autistic people re-write their own stories through a retelling of the world designed by and for Autistic people.
If you are a family, professional, Autistic person, or anyone in a caring position, and you want to do better by the Autistic people in your life, this is for you. Join us in retelling the story, rather than letting it be told for us. This world can be enjoyed if only we balance the scales more.
And don’t forget that NeuroHub Community Ltd has a whole world of things out there to offer which you can find at the link below.
One response to “What Was The First Story You Heard About Autism?”
I had barely heard of autism when I became a care worker and began working with autistic clients at the age of 44. I received training in what autism is but I recall having difficulty in understanding exactly how autistic people were different from other people. I didnโt give much thought to why that was but I learn about the traits of autism. About 10 years later it was suggested to me that I โmightโ have Aspergerโs Syndrome. I didnโt feel surprised that this question was asked and I felt it very likely was a correct observation. I was referred for a diagnosis which came back โpositiveโ although the evidence for my early years was limited but I was aware that I had always been same. Over the following 10 years I have been learning about what Aspergerโs means to me and how I work with this knowledge and understand myself better. I am very accepting of my diagnosis.