Amanda Hilles studied creative and professional writing at Missouri State University. An avid writer of both poetry and creative non-fiction, Amanda is currently working on publishing a memoir about her brother, who has autism. Her goal is to contribute to the rising Autism Awareness campaign and to reach out to families with similar experiences.
Through Broken Glass
In our home videos, there are three little girls with thick southern accents, laughter like glittering bells, butter-blonde curls, brown eyes, and freckles. In every video, there is screaming in the background. The little girls don’t seem to notice. They go right on with their stories or opening their Christmas presents, and the screaming is the music that patterns their lives, a forgotten response, no longer startling, an ignored constant.
In our home videos, there is a little boy with hazel eyes and white-blonde hair. He won’t make eye contact with his family and doesn’t like to be hugged. At Christmas, when his sisters are laughing happily with their gifts, he throws aside army men and fire trucks, runs to a corner to stick himself to a wall, and screams. His movements are jerky, jarring, spontaneous. He rips at his ears.
Even in the claustrophobic embrace of Autism Spectrum Disorder, as a child, our brother was still accessible. He exhibited the classic conditional behaviors of someone with a severe level of autism, such as proprioception episodes, difficulty learning language, inability to effectively communicate his needs, and OCD, but he wasn’t deeply and intrinsically angry. During the rare times Brandon would meet our eyes, we saw a brilliance. He was happy. We could interact with him, take him places as a family, steal hugs, and enjoy his company. But when Brandon reached sexual maturity, we started to lose him.
***
Somebody said his name. Somebody looked at him wrong. Whatever happened, it set him off. He brayed, irate, and put his face through the two windows in our living room. Glass cracked and split with a cold, sharp sound, tinkling as it fell out, curious harmony juxtaposed with his exaggerated displays of rage. He grasped his left arm and brought it to his mouth, biting deep chunks out of his fore flesh. Dad made to restrain him before he hurt himself further, or hurt someone else, but the one time he succeeded in holding Brandon down was one that our brother never forgot; since that day, Dad was a target. When Brandon saw him coming, he grabbed a pickle jar and launched it at Dad’s head.
Brandon is pacing the floor, talking to himself. Every third sequence of words is Fucking, Fucking, Fucking! He’s piercing us with hateful eyes beneath thick, heavy eyebrows, challenging anyone to interfere. In the aftermath of his fury, both Dad and Brandon are bleeding, my mother’s in tears, and there’s thousands of dollars worth of damage to our living room.
He’s a grown man now, as big as our father, uncontrollable. When he used to get like this, one of us would hug him, ground him, put pressure all around him so that he could feel his own body in space. As he got bigger, only Dad could do it. Now, nobody can hold him down. His rage consumes him, and destruction is all that we’re left with. He’s medicated now, Lisinopril for high blood pressure, Abilify as an antidepressant, 700mg Magnesium and 1500mg B6 for anger. This cocktail helps to regulate his moods and help him control his emotions, but it’s no cure.
Dad’s sitting at the computer reading stories of other families living with the disorder, dried blood crusting his crown. Turns out, many people with autism develop these kinds of hyperaggressive tendencies once they reach their late teens and early twenties. They target the strongest member of the household, most likely because that’s the person who will prevent them from having outbursts. What he was reading stunned him; it was like they had written stories of everything our own family was going through. It scared us all; there were first-hand accounts of mothers explaining how their grown sons got angry and attacked them, sometimes even breaking bones. In the worst account we read, the parents were killed in their sleep.
This is what you don’t hear. This is what the doctors don’t tell you until your brother’s pissed off in the kitchen threatening himself with a butcher knife. This is something nobody prepares you for when he’s diagnosed with autism at age three. His entire personality changed. He doesn’t express love to us, or affection. We walk on eggshells in our own home, on tiptoes, and one slip can send us all ricocheting into hell. We can’t say his name, can’t say the words “glass”, “window”, or “stop”. We can’t get too loud when we’re playing, can’t rough house. We can’t say anything to him when he goes for seconds and then thirds at dinner, throwing up what he’s engorged himself with, and then eating more, a hundred dollars worth of food gone in a night, hardly masticated, not enjoyed, just binged and regurgitated in a sequence of obsessive compulsive routine. We have to listen before we enter a room, listen before we open the bathroom door. You can’t knock; it will piss him off. If the light’s off, don’t assume it’s vacant. It’s like a video game where the dangers are restricted to repetitive paths; he steps around the house, touching back, blinking the lights on and off and on and off, and you have to watch it, take care not to interrupt this rhythm, not to cross this invisible path that he treads.
We’ve found that the most effective and productive solution is to just grab everyone and go outside, in the rain, in the snow. Stand there and witness with flinching ears the destruction going on within, the shattering glass, the splintering furniture, and then go inside and deal with not being able to investigate his person to make sure he’s all right. It seems some days that we’ve lost our brother to this disability. I remember the smiling child he was, the one who would “adopt” each of us for a month or two, sleep in our beds, shadow us, laugh and allow himself to be tickled, make up his own private language that we all adopted as kids. He’s a stranger to us now. As a family, it’s our job to be his advocate still. To understand the changes that he’s going through and the innate frustration that he must feel every second of the day to deal with chemical imbalances and emotions and the express inability to communicate his feelings and needs, his lack of freedom. He’ll never have a first car, a girlfriend, an independent life or choice. As a family, we found a new way to love him like we’ve always loved him, a new way to respect him. I just wish somebody had told us what would happen.
Hyperlexia Journal 