In the past couple of years, some clever people have created online autism simulations. Autism simulations attempt to sensitize neurotypical people to what those with autism experience on a daily basis. When you play an online autism simulation video, you’re immediately bombarded with confusing sensory input – loud and discordant sound, bright lights, and camera movements that cause vestibular discomfort. Voices and background noise become one, and the busy world suddenly becomes an unpleasant place in which to reside.
But it’s just a video. Two minutes of noise and visual chaos, and you’re done. I’ve watched them. And, while I appreciate what the creators aim to accomplish with them, I’ve understood that I wasn’t greatly enlightened by the experience.
Bell’s Palsy changed everything.
Four months ago, I pulled into my workplace, got out of my car, and attempted to smile at a co-worker. That’s when I realized half of my face wasn’t working. I walked inside, looked in a mirror, and decided I was having a stroke. After a quick trip to the ER and a brain scan, it was determined that I had simply come down with Bell’s Palsy, a form of facial paralysis resulting from damage to the facial nerves. Relieved that it wasn’t something life-limiting, I returned to work and attempted to feign a positive attitude about my now jarring facial expression.
As it turns out, I had a pretty bad case of Bell’s Palsy. Within a day, my face became overly sensitive. The slightest touch of a fingertip was painful. A fan blowing on my face made my head ache. Because my left eye wouldn’t close properly and I couldn’t squint, bright light became problematic. I could barely see upon stepping outdoors, and bright indoor lighting was disturbing to me. My eyes blinking at different times upset my vision.
But the worst was yet to come. Within two days, the Bell’s Palsy had worsened. And, because I had complete facial paralysis, the muscles that normally dampen sound ceased to work. The condition is officially called hyperacusis, but I called it Superman Hearing. Suddenly, I could hear everything – the filter on the fish tank, the ceiling fan in the other room, the pop in my husband’s jaw as he ate. But it wasn’t simply a matter of hearing everything. The problem was that it was all at the same volume. So, everything became too much. I nearly went into a panic at work. The school bells were painful to me. A pencil dropping on to a desk made me jump. I had to ask everyone to lower their voices, and I couldn’t tolerate radio or TV. I donned headphones and tried not to cry. But my voice amplified inside my head with the headphones on, so I couldn’t tolerate speaking with others. All I wanted was to curl up in a ball in bed in the dark and wish the world away. Because the world? It hurt me.
And – although I’d comprehended that sensory integration issues impacted my autistic child – I now look at him with all new eyes. Because of this experience, he’s even more amazing to me. Amazing in that he walks through life experiencing this (though I’m certain it’s probably not exactly the same) every day. Whereas I shut down for a few days and hid out during the worst of it, he isn’t given that option. He’s 5 years old, and the world is attacking him. When I’m alone with my thoughts and consider that, it steals my breath. And when he curls up in a ball and hides out from the world for a few minutes, I find myself understanding in a way I couldn’t have before.
Did Bell’s Palsy make me autistic? Of course not. Do I now have a complete understanding of the autistic experience? Nope – not even close. Because Bell’s Palsy did not affect my ability to communicate. It didn’t alter how I perceive others. It didn’t change the way I process new information. I still think in words and not pictures.
But Bell’s Palsy did act as a tour guide of sorts. It took me to a place I’d never been and pointed out some key areas I wouldn’t have discovered on my own. It gave me an experience merely reading about couldn’t afford me. It allowed me to see my son and his reactions to the world with a different lens. It isn’t often that we get to live as others before returning to our own lives. But when we do, we are changed – forever reminded that our own perceptions are just that, perceptions. When you realize that your perceptions aren’t necessarily facts, then all manner of truths and possibilities open for you.
So, despite the residual paralysis, pain, and hearing and vision issues I’m still experiencing, I understand this lesson to have been both painful as well as a gift.
Of course, the most valuable lessons in life usually are.