Joanna shares her experiences of staying with a younger autistic brother, Reuel, for Different Truths. She tells us that the smallest triggers, things neuro-typical people would not even notice, act upon him like bomb-shells, triggering a sensory overload that either causes him to shut down or sends him into a panicked frenzy where he hurts himself and the people around him. Autism has no cure.
I began writing this article in a mood of despair, hopelessness and extreme pessimism, akin to the feelings I experience on particularly terrible hair days, only far, far worse. Now, a few minutes later, I return with a singing heart. If there was a field nearby, I would skip in it, like a new born lamb, or some other frolicsome herbivore. Allow me to present to you a detailed timeline of the events that caused these sea-changes.
Earlier this evening, in accordance with my new year resolutions, I was in the exercise room, getting ‘ripped to the core’, as the Youtube video assured me I was, when the smell of smoke disturbed me mid-squat. Deciding that, in the event that the house was on fire, the priority of rock-hard abs was slightly diminished, I followed the scent to its source, which turned out to be my room. Inside my room I found: a pile of ashes on my desk and bed, a singed copy of the library book I had taken out the week before, ‘The Feynman Lectures on Physics’, and, in a strange twist on ‘Nero fiddling while Rome was burning’, my little brother, standing among the dismembered remains of the shoulder pad I use for my violin.
Following the advice of the Zen blog I occasionally read, I took deep breaths in and out. I meditated for a while in the crane pose. I folded origami butterflies. When I decided that my emotions were under control, I once again surveyed the wreckage. All this chaos – caused by a few minutes of inattention and intense cardio. I tracked the little arsonist down – and found him uncorking a bottle of cleaning liquid – an unusual beverage he has a history of consuming.
My little brother, Reuel, is severely autistic and non-verbal. My experience of living with him has been colourful – from memories of him spitting soup in graceful arcs onto the shoes of snooty waiters at high-end restaurants, to running away at the age of three, only to be returned, hours later, by a truck-full of construction site workers. It has not been without its challenges. He is thirteen now, but, luckily, appears much younger. He stims, has public meltdowns, and chirps away in a language of his own invention, which means that our family has had to grow accustomed to being out of place in many social situations. His education is difficult – and expensive. The government of India, of course, has been a non-entity throughout the entire process.
Life with disability is difficult – and I have to constantly remind myself that it is even more difficult for Ru than it is for me – he has been thrust into a world both incomprehensible and hostile, forced to comply with rules that seem entirely without context, and always changing.
The smallest triggers, things neuro-typical people would not even notice, act upon him like bomb-shells, triggering a sensory overload that either causes him to shut down or sends him into a panicked frenzy where he hurts himself and the people around him. Autism has no cure.
The knowledge of all these things is a constant source of stress, and the reason for my bleak mood as I sat down to write this article. As soon as I’d settled down, I heard sounds from within my room and went to investigate. Reuel was sitting quietly on the bed, twirling one of the pieces of my shoulder pad. On a whim, I put a piece of paper in front of him and a pen in his hand.
“Look, Reuel,” I said, grabbing his hands and forcing his attention to me, “Eyes.” I traced the outline of my right eye with a finger.
“Eyes,” he repeated, (this is known as echolalia), beginning to do the same to his eye, except with an open sketch pen.
“No,” I said, grabbing his hand, “Do it on the paper.”
I gestured, and then, to my astonishment, he drew a rough circle on the paper.
“Yes!” I said, “Eye! Very good! Try the other one!” I traced my left eye with my finger, repeating ‘eye’. He repeated after me, traced his left eye with a finger, and then drew another circle on the paper.
I was astounded. Reuel has drawn before – but previously he’s only made copies of simple shapes. This was an unbelievable step forward – a symbolic representation of a three-dimensional object. This was his first original drawing – a rough sketch of my face.
That’s what living with autism is like – terrifying, exasperating, often very sad, but also wonderful and amazing. That’s why, if I ever did become a development journalist, I know what my subject would be. It’d be pretty cool to be – in a literal and metaphorical sense – a voice for the voiceless.
Pix from Net
Joanna Sarah Koshy is doing her Computer Science B.Sc in Bangalore, St Joseph’s. She has been published previously in Browsing Corner, Inklinks: an Anthology and The Significant Anthology. She has also been published in Learning and Creativity. She has worked as the editor for her school magazine when in school in Clarence HS, Bangalore. She is working on a novel presently, besides having her own blog Jabberwockyslayer.