5 minute read
and sensory perceptions
Unintentional Gaslighting
AND SENSORY PERCEPTIONS
BY JOELY WILLIAMS
WHAT IS NORMAL? GROWING UP AS AN AUTISTIC AND CHRONICALLY ILL WOMAN, I AM STILL HAUNTED BY MY ATTEMPTS AT ANSWERING THIS QUESTION. I’M STILL TRYING TO LEARN WHICH PARTS OF MY AUTISTIC EXPERIENCE ARE SHARED WITH OTHERS, AND WHICH OF MY PERCEPTIONS, HAD ME UNINTENTIONALLY GASLIGHTED, BULLIED OR TOLD OFF
It took years for me to finally understand that, to most other people, sensory issues were ‘not real’. I remember one time at school, my class had to make a list of problems we had. I got a big shock; I realised then, that other people don’t experience sensory pain, like I do. My list was triple the size of my classmates, as I had listed all my problematic sensory experiences. No one wrote about the excruciating sound of the blinds flapping in the breeze. The mindbending scratch of pens, the stomach-churning creak of chairs. The nauseating tremble of words on paper, the migraine infusing scent of disinfectant, sweat or perfumes, the hot, bright, lights blinding their eyes. The labels in their clothes burning their skin. Nobody. No one else felt these things were a reality, let alone a problem. They thought I was joking, simply attention seeking; they labelled me the class clown because they thought I couldn’t possibly be serious, about the ‘ridiculous’ and ‘not real’ sensory problems I had claimed to face. It blew my mind that other people’s skin did not burn. How could we perceive the world so differently? It fascinated me. People don’t understand these sensory differences though. They told me off, saying I’m rude, inconsiderate, careless, selfish, and otherwise making me feel awful for my lived experiences that they believed to be non-existent.
Friends told me it can’t be possible to hear electricity, or for these sensory problems to be real,
let alone a problem. Additionally, teachers forced me to make eye contact - not understanding that I deliberately don’t make eye contact to help me focus and understand what is being said and to prevent sensory overloads.
That’s the true horror of unintentional gaslighting – which, by its definition, is to ‘manipulate someone using unintentional psychological means, into doubting their own lived reality, lived experiences, sanity or self.’ The horror, is that unintentional gaslighting is something that all autistic people have experienced at some point in their lives, often from family, friends and professionals, who genuinely have no idea they are potentially emotionally abusing and would never dream of harming-yet they accidently are.
I was unintentionally gaslighted by people believing they were helping me - I wasn’t allowed to helpfully stim to control the negative sensory input, with safe sensory output to prevent future overloads / shutdowns or meltdowns – because they didn’t understand how helpful stimming is. The term ‘stimming’ is short for self-stimulatory behaviour. Stimming usually refers to specific and repetitive behaviours that may include hand-flapping, rocking, spinning, hair curling, nail biting or repetition of words and phrases. Stimming helps to control negative sensory and information input with a safe, repetitive sensory output that drowns out the offending and unhelpful sensory inputs. Stimming can improve focus, keep meltdowns and shutdowns at bay and can also ease physical pain and internal anxiety as well as expressing frustration or joy.
I was not allowed to communicate in the helpful way I best knew how, or have sensory rest or time out, because my exhaustion and shutdowns of capabilities were deemed as ‘fake’ or ‘not real’. I was forced to shake hands and hug people as if my lack of consent to touch or be touched, meant nothing – because I was gaslighted into believing I had to ‘try harder / not be rude and inconsiderate because they believed that those sensory issues are not real.
I was gaslighted and taught that I was wrong for doing or feeling these things and worse of all, that the reasons I desperately needed to do (or not do) these things, were not real, or were easily overcome. Unintentional gaslighting brainwashed me into believing society’s worse misconceptions of
me and my autism – I believed that I was wrong, simply for being myself. That’s the problem; autism is a beautiful disability that has many hidden depths and quirks and is so misunderstood - and unintentional gaslighting is rooted from these misunderstandings of autism.
It all became things that people would gaslight me for, because they could not understand a lived reality so different to their own – so it couldn’t be real / that bad (and they say our ‘Theory of Mind’ is poor!). Unintentional gaslighting, diminishes your sense of self and you end up hiding behind a mask, pretending to be what they believe you should be – never allowed to be yourself.
The neurotypical mask I was forced to hide behind, due to unintentional gaslighting, is unforgiving and drained my capabilities with endless shutdowns. Shutdowns mean that I would suddenly be in agonising pain and unable to walk, talk or make basic connections, like establish (mentally) if I could feel rain on my skin. Shutdowns would last for hours, days or weeks, depending on me being able to rest in sensory friendly surroundings, be able to stim, and be myself to recuperate my lost abilities. Imagine then, being gaslighted and not allowed to recover because people believe the shutdown can’t be physically possible?
The mask of ‘normalcy’ I hid behind, was painful and emotionally depressing, and it took many years before I was able to take the mask off again, and feel truly accepting of myself, as an autistic woman. I finally realised that it’s not me who should change, but my unjustified society, my inaccessible environment and people misconceptions of me. I was never in the wrong- societies misunderstanding of me, was wrong. My AspergerWorld and my sensory pain is as real, as anyone else’s lived reality, and just because sensory perception is so diverse, does not mean it isn’t real. After years of gaslighting trying to make me change myself, I now see my autism disability as a fascinating and complicated gift. Thanks to my autism I am honest, trustworthy, loyal, justice seeking and passionate and I wouldn’t change my Autism for the world. I love my AspergerWorld, after all.
MORE ABOUT JOELY
Joely Williams is a passionate Autism Activist, Motivational Speaker, and Author of “AspergerWorld: My Fairy Jam Jar” book. Her book is endorsed by Professor Simon BarenCohen, a world leader in Autism research and Lorraine Petersen OBE, an educational consultant and trustee of Ambitious about Autism.
For more information, visit www.aspergerworld.co.uk
