I Have Been Clueless About My Sensory Needs For Most Of My Life
It’s vital that Autistic children grow up understanding their sensory needs.
Roquillo Tebar / Shutterstock As a kid, I knew that going to the beach was a fun thing to do. Everyone around me was having fun. It was a special treat, something to look forward to, especially since my family lived five hours drive from the coast.
But now, as with so many other things in my earlier life, I look back and see the chasm between what I was actually experiencing and the performance of what I was expected to feel. I learned to perform for fun because it seemed important. I learned to ignore everything that sent a message other than fun.
Fast forward 15 or so years and I’m in a noisy nightclub somewhere in the city pretending to be having a good time like all the other twenty-somethings. And I try to convince myself that it’s a fair price of admission to a world that at this point in time, I still believe I can belong in.
Another few years and the focus shifts from pretending to have fun to pretending to cope in the grown-up world of earning a living and striving for financial security. In this world, I grit my teeth through twice-daily train commutes that assault my senses from multiple fronts.
All these things made my senses rage; a rage I swallowed because it had no place to go.
I hated the dry stickiness of salt water on my skin and the way the sand clung to my feet. I hated the pounding bass of the nightclub and the radiant heat of people standing too close to me. And I hated the sounds of people chewing on their foul-smelling food on the train. Pretending that it was all fine siphoned off my attention and energy and just made everything hard.
The harder I tried to put up with these uninvited sensations, the bigger the shadow they cast. I felt them closing in on me until all I wanted to do was run, though not really understand what I was running from. I craved being somewhere that would deliver equilibrium which in my mind’s eye was clean, dry, non-sticky, quiet, and spacious.
But I never mentioned my discomfort because I didn’t know how. There was no language to talk about these deeply unpleasant experiences and how they affected me. There was nothing to give shape to these thoughts beyond a vague feeling of discomfort and irritation.
This was simply the way things were done, therefore it was the way I must do them. It didn’t occur to me that my needs were any different from anyone else’s, much less that they would warrant any special consideration. No one else seemed bothered so I tried to go with the flow.
As life went on, it got harder to ignore the reaction triggered by hearing someone biting their fingernails or the awareness of their body encroaching on my personal space. Or the assorted chemical odors that made my head ache and my nasal passages explode.
But it was no easier to express my discomfort, much less do anything to mitigate it. No space existed where I could seek to have my needs met without being questioned and judged; accused of being difficult or flaky or just weird.
It wasn’t until about three years ago that it dawned on me that the way my brain processes sensory input is different from the majority of people. It was one of the realizations about myself that were instrumental in being diagnosed Autistic at the age of 48.
I didn’t grow up with any concept of sensory sensitivity. The five senses were as definite and indisputable as primary colors. They more or less functioned the same way for anyone unless you were blind or deaf.
I didn’t have a parent seek out clothes in fabrics and styles that would accommodate my tactile sensitivities. There were no teachers checking in on how I was faring in large group activities or offering headphones if things got a bit noisy; or a quiet corner if it all got too much.
Instead, there were just blanket expectations based on an understanding of the world where everyone was the same and had the same needs. There was no room for anyone who had different needs.
The world I grew up in was not populated by the labels of diagnostic categories that enable self-knowledge. Instead, people bestowed labels of their own: weird, dumb, lazy, hopeless, and awkward. These labels enabled nothing but a retreat into a silent world of shame.
Although it triggers bittersweet feelings in me, more children than ever being diagnosed Autistic is a good thing.
Some of them are lucky enough to have parents who affirm their neurodivergence and support them to tune into and honor their needs. Parents like this engage with their children and take the time to figure out what makes them tick — and what will help them thrive.
Their parents will advocate for them and set them up to advocate for themselves and to have some control over the environments they move in.
They get that being Autistic isn’t a battle against individual pathology but against ableist and discriminatory systems and attitudes. They accept their child for who they are and don’t force them into situations that are uncomfortable.
Being able to identify as Autistic earlier in life will enable a lot more people to grow up understanding and appreciating their differences rather than suppressing them; to articulate their needs from a perspective of Autistic identity, not swallow them trying to be neurotypical.
Jae Lewis is a freelance writer and lawyer who writes about love, marriage, divorce, and Autism.