Being an undiagnosed autistic has many challenges.
When you compare your reactions to things with other people’s, you feel like you’re getting it wrong. When other people take things in their stride, and your brain feels like it’s expanding inside your skull to the point you can’t think, then you feel like you’re overreacting.
And then there’s the gaslighting.
Gaslighting is a useful term, named after an old film where Ingrid Bergman is psychologically abused. Her abuser tells her that her memories are false, he questions her experience of her environment, he denies that things she remembers happening, have happened.
The result is that she ends up questioning her own perception of reality. She doubts her own memory. She doubts her sanity. She cannot trust that what she thinks is her lived experience is true.
Being an undiagnosed autistic can feel like the whole world is gaslighting you. From being told not to be silly, the lights aren’t hurting you, to being shouted at to pull yourself together, when you’re slipping into meltdown, you’re being told every day that your lived experience isn’t real.
There have certainly been times that I have doubted my sanity. I’ve looked at myself and I’ve listened to all the people who have told me what my experience actually was; professionals who have told me that brains don’t just turn off and go quiet when they’ve had too much, people who have told me that textures don’t hurt you unless they’re sharp, I’ve watched other people’s reactions and seen that they are similar to each other’s, not mine.
There was no representation of people like me in the media. There was no one to point at and feel shared experience with. I couldn’t recognise myself anywhere. So it must be me who is simply wrong.
As I got older and gained more self-control, I began to gaslight myself. I’d tell myself that my reaction wasn’t real. I was being stupid or attention seeking. The fact that I knew I didn’t want that attention, didn’t matter. That’s what I had been told. It must be my motivation.
You see it wasn’t just about masking for the world’s sake, it was masking to myself too.
Without the self-knowledge I became my own worst enemy. I controlled any stimming in public, I mocked myself in private. I criticised myself for any reaction outside of the norm. I told myself how useless I was for experiencing the world wrongly. I did my best to see it the right way.
This opened me up to people telling me other things weren’t real when I could see that they were. There are people who will take advantage of someone so willing to distrust their own perceptions. I was trained to believe that other people saw the world in the right way, so I could rely on other people to tell me what was real, I couldn’t rely on myself.
Three tiny words burst that bubble for good, “You have autism”. I don’t care if that language is person first, disability first, or diplodocus first, because those words made my world real.
For the first time in my life, the way I perceived the world was valid. It was shared. It wasn’t that I was wrong and everyone else was right, it was that we experienced everything differently.
Other people could never define my reality. They could never explain it or accept it, because they had no way to experience it. It wasn’t malicious gaslighting (mostly), it was misunderstanding. It was poor theory of mind on their part. They were unable to imagine and empathise with someone who did not perceive things in the exact same way that they did.
I wonder how many other people are out there, carrying on that gaslighting of themselves. Denying their own senses. Denying their reality. I hope they find the key. I hope the media puts someone like them on a screen. Not a savant, not a caricature, just a normal person experiencing life the way they do. I hope that they get to learn that they are not alone and they can trust themselves, the way that I now do.
I should never have distrusted what I knew to be true. Autism set me free.