The first time that I felt ashamed of a situation that was out of my control took place one year ago, when I went to Costco to purchase my first pair of glasses. It was a bit of a momentous occasion, as I had never worn glasses before. I went with my three-year-old autistic brother Pete, my six-year-old sister, and my mother to the optometry counter. Pete was a little cranky that day; we weren’t quite sure what was wrong. The minute we got to the counter he began to scream bloody murder. I picked him up and tried to calm him down with any soothing words that I could muster, but all the humming that I offered had no effect. My brother is autistic and has no means of communicating with us, so the main challenge of this situation was to figure out what the problem was.
We tried the usual culprits. Food? He wasn’t interested. Was his diaper wet? No, it was dry. When neither of these was the problem, as they usually are, I become a bit frantic. With no idea of what to do, all I could do in the meantime was attempt to control the movements of a child who was writhing about, contorting his body like some sort of amphibian in the sea, and screaming with tears streaming down his cheeks.
As I attempted to restore some sort of order in the situation, I looked around to make sure that no-one was nearby, or, at least, no-one was close enough to us to be bothered. To my absolute horror, there were at least ten parents circling ‘round us like vultures. They shook their heads at us. They pointed at us as if my brother was some sort of spectacle; an act in a circus. “Come one, come all!” Worst of all were the expressions on their faces: pity, disgust, and disdain. In that moment I felt overwhelmed by helplessness. Have you ever had a single moment trigger the onslaught of all of the emotions that you try to suppress?
Well, this one did it for me. I couldn’t speak. I could barely breath, to be honest. Mostly, I just wanted to yell at all of those people, but on some level, I was also at fault for their stares. I should have stood up for my brother and explained to those people why he couldn’t communicate his frustrations to us. I was too afraid, too overcome by sorrow and regret. This, my friends, is one of the realities that families of autistic children face.
Until my brother was diagnosed with autism, I didn’t really know much about the condition. The term was thrown around by one of my former Biology teachers in junior high, but at the time it had no significance to me. It was just another fact to memorize, or knowledge with which to impress my parents. That all changed when my brother was born in 2009. My mother, my father, and my then three-year-old sister were ecstatic. The best thing about having a newborn, for me, was the multitude of possibilities that I saw within him. One day he would crawl, and next, he would walk. After that he would talk, and go to school to continue learning about the world around him.
From the very first day, I imagined what it would be like to be the 34-year-old sister of a high school graduate. What it would be like to go through college applications with him, teach him how to drive, and help him through whatever he needed. It was a picture-perfect view of our future, and I wouldn’t let go of that vision for our lives in our unconventional family.
I remember his first word: mama. He would say it over and over again. He would say it when it didn’t make sense to say it; to my dad, for example. Nevertheless, we loved that developmental step. By the end of his first year of life, he had learned how to say about ten words, and he would say them all the time. Until he began to regress. I had later learned, that is common with children who are on the autism spectrum. Each day he could say less and less words until he stopped saying words altogether. When he was a baby he would sort of recognize his own name, but when he was around two years-old he no longer seemed to understand that we were trying to communicate with him. He even stopped making eye contact. After months of doctors’ visits and consultations with specialists, they finally told us was wrong with him: he was diagnosed as being on the autism spectrum.
That day is still seared into my memory. I came home from school one day, and my dad sat us down. He said rather calmly, “We got the results from the specialists today. Pete has autism. They told us that there are a number of….” I don’t actually remember the rest what he said, to be honest. All I heard was the word autism. To me, that was the nail in the coffin. With that one word, I began to cry. At that time, the only way that I could conceptualize autism was as an end to everything that I had hoped for.
In that moment, I believed that he would never communicate with us. He would never go to an ordinary school. He would never go to college, and he would go throughout his entire life being treated as an invalid. The world would remain just as foreign to him as his actions and his bouts of frustration are to us. That day marked the end of the Pete that I knew. The end of the Pete that I wanted, and the Pete that I thought should have been. Worst of all, there was nothing that I could do about it.
Over the next few months, I began seeing my brother in a completely different light. He became something to be controlled; something to be explained. In my heart, I felt the constant need to apologize for everything that he did that was out of the ordinary. But why? He wasn’t the problem; his inability to communicate was. I still have a hard time separating the developmental delays that he experiences from the person who he is. I will probably always have that problem.
Therapists, speech pathologists, and respite workers constantly stream in and out of our home. They make me uncomfortable, because their presence has forced me to accept that Pete’s life will never be what I wanted it to be. He needs them, and they help him understand the world a bit better, so I try to deal with my petty little issues. Every time they come they give us a few things to try saying, “Practice this technique. Tell us if it works.” The problem with autism is that there are a wide variety of symptoms that can result in a diagnosis. There is no textbook case, so any treatment regimen is a process of trial and error that lasts for the rest of the individual’s life. We are on this journey together, as a family, and it makes it a lot easier for me to bear.
The end of this story is more of a beginning for me. I’m finally beginning to understand how my brother’s mind works and the intricacies of autism and its effects. Now, I take each day with my brother as a gift. He’s taught me so much about myself and has forced me, by merely existing, to reexamine how I view people. I’ve learned that for as long as we both live, he will continue to have a profound impact on my world.
Creative Commons photograph courtesy of photon_de on Flickr.