Transformative Diagnosis

A piece that deals with my brother's transformation due to his autism and the way it affected me and my family.

It is hard to admit, even to myself, but I question whether I truly remember my brother before his transformation, before he wrapped himself into a cocoon and forgot to emerge. I wonder if he ever allowed anyone to look directly into his eyes. Was he ever that vulnerable? I vaguely recall a time of embraces with tiny arms wrapped tight around my neck that came without begging. He would run to me, face bright with smiles and joy that comes with the love a child has for those around them. We had a bond that could not be severed, that could not be replicated.
Then he changed in the blink of an eye, in the time it took for me to return from a temporary world of congregating verbs and multiplication. Suddenly, he was no longer my loving little brother, not in the way I understood it.

“This is all normal for children like Brendan.” The therapist’s soft voice was full of concern. Yet I could detect the slight undercurrent of condescension, as if we were not worth the time or effort it took to explain this.

“You’ll just have to come to understand it. Everything will be different now.”

I did not understand it. Their words and explanations made no sense to the mind of an older sister who only loved the tiny creature that shadowed her every step. I could not view him as anything other than the child I had known the day before.

“It’s going to take time to come to terms with this. Autism isn’t something that only affects the child, but the entire family as well.”

I could not stand to hear the concern lined with exhaustion that blanketed every word. I leapt up and screamed with all the rage my little body could muster that I would never understand, that he was not-- and never would be�"any different. As I slammed the plywood door with the fancy name tag along the front. I could hear my mother explaining my outburst between her own sobs: “I’m so sorry. It’s just hard for her to take in right now.” I could not make myself care. In my mind, they were liars. Nothing was wrong with him; nothing had changed.

I still question whether we spent an entire afternoon in that office. The eggshell white walls lined with framed degrees and crayon pictures from other patients is lodged so vividly in my mind but I question their validity. Maybe the walls were tan or pale green like the walls would be later when I visited the hospitals. Did the sound muffler by the door sound like the ocean or static? Were the chairs comfortable? What color was the carpet? What I do remember is no matter how ardently or fiercely I fought, he had changed. They tiny boy with wide spread hazel eyes and curly brown hair had receded into himself, secured himself inside his cocoon. All I could do is wait for him to emerge.

For years, I waited for that day. I begged for embraces that came with eye contact and arms around my neck. I longed to hear “I love you” again without having to ask. Instead, I pleaded with the little boy and tried to hold him tight. I attempted to ignore his grunts of displeasure as I tried to will the child I knew back into his body. I was convinced someone came in the night and replaced him with a changeling child. Why else would he now recoil from someone who willingly showered love on him?

I remember the aftermath of his transformation vividly, with a clarity that I can recall few other memories. It hurt us all in a way that could not be articulated but was clear in our interactions and mannerisms. We all recoiled into ourselves, seeking some fragment of the life that had been before the diagnosis. I searched for the little brother I had lost while I railed against fate and God. I wanted someone to blame. I think we all did.

School became increasingly difficult. The next week we had to meet with his teachers. Mom wanted me there. She felt my input was important for them, as if I had some secret insight into the child no one else had. And maybe I did. All I know is I felt like an adult sitting in the big cushy chairs in the conference room at my old elementary school. Mr. Gabeldon sat across from us along with the vice principal and the Special Ed coordinator. I felt their eyes boring into us with disbelief and slight ridicule. What could we possibly know that they didn’t?

“Your son has what, Ms. Moody?” The voice was not rude or exhaustive like the therapists had been but I still disliked the tone. Mom turned at looked at the vice principal. Her knuckles were white from holding the arm of the chair.

“My son, Mrs. Carter, has Autism Spectrum Disorder. I would assume the fine educators at this school would know what that is.” At that moment, the tension receded and they easily took our advice on how best to help in with this new element. None of them had ever heard of Autism, let alone had taught a child with it. Therefore, we explained to them that he had to wear a beanie over his ears to keep out the noise, have something to play with to keep him busy, and to let him walk out of class when the atmosphere just became too much for him.

“We will do our best” was their reply and I remember thinking that was all any of us were trying to do.

Jeff, my stepdad, was having the hardest time adjusting to the change. He had pinned all his hope for a normal male child on the changeling and it had been in vain. Worse than any of us, Jeff could not handle him or the way his world worked. When Jeff got angry, my brother receded further into himself, hiding behind a wall of fantasy and silence. When Jeff yelled, Brendan hid inside himself. Brendan did not understand how anyone’s desires or opinions could differ from his own. He could not and did not understand why he would ever be in any type of trouble. I found myself, fifteen and angry at the world, at odds with Jeff. Our hands went to each other’s throats as he refused to acknowledge the change and I only wanted to protect Brendan from any further pain.

“Why won’t you listen to what I’m telling you?” I looked up from my homework at the scene only a few feet away. Brendan sat on the floor, Legos spilled out around him making him look like a child amidst a vast ocean. I remember Brendan not even looking up at Jeff; he simply kept building, methodically picking out the pieces and adding them to his masterpiece until Jeff grabbed his arm in an effort to get his attention.

I leapt to my feet, my homework spilling from my lab and landing in a pile on the tan carpet that may have been white at some point. I threw myself between the two of them and I saw the rage in Jeff’s eyes and the passive confusion in Brendan’s. At the end of it, I bore the brunt of the altercation. I ended in my room, banished for my actions while Brendan ended up in his bed, sleeping away the rest of the night that never seemed to end for me. It was then I knew this new child, this being trapped in the cocoon must be protected from anyone, even Jeff.

Mom only sighed, obviously exhausted by the situation as I recounted the story to her later that night. She sat on her side of the bed, a glass of cheap wine beside as she played Legend of Zelda. She said it was the only way she could relax anymore. I remember wondering if she meant the wine or the game.

“Misty, he just doesn’t understand Brendan yet. We have to patient and let him come around.” What she did not add was the unspoken knowledge that the odds of that was very low. Jeff had wanted that son who would play football and go into the military, just as he had. He would never have that now. I can only imagine that disappointment.

“That doesn’t mean he can treat him the way he does!” Mom just shook her head, promised she would talk with him later, and told me to go to bed. I knew she would not talk to him. She would never mention it again until she walked in on a screaming match between Jeff and me.  

I cannot know or even understand what Brendan felt or even understood when these fight happened. If I just looked at him, I would think it had not phased him. His blank, expressionless eyes would tell me that everything that happened around him could not touch him. He lived in his own fortress and the drawbridge was up�"No one could touch him; he was safe. It is only later, after the years of therapy that we would discover he had absorbed it all, like a sponge that took in every word, exchange, and scream. He internalized it all, hording it inside of him like the dragons he loved so much.

It was another therapist office with framed degrees and child drawings when Brendan, from the corner where he played with the well-used toys, spoke up for the first time since we all agree to attend the sessions.

“I think you guys fight too much.” We stared at the boy in shock. Is that what his voice sounds like? But that was all he said. After that tiny glimpse into his fortress, his cocoon, he closed himself back up and did not speak again. And the fighting became less frequent, even if it did not cease.

It is somewhat shameful to admit but I do not remember the child as well as I remember the body trapped inside himself, shutting out the world. Sometimes I still question if he existed. I question the memory of the warmth of the embraces and giggles as he watched our daily lives.

Yet my love for the new child grew, blossoming from the confusion in which it had been planted. I found myself watching him as he built his Lego towers half way to the moon, muttering about the way in which he blew up the Great Wall of China then had to rebuild it for them. It was strangely peaceful to watch his purity and honesty as he interacted with the world in his own way. It was in these moments I realized that he had already emerged from his cocoon. He had already burst forth in a form made of imagination and confidence despite the diversity haunting him.

The house was rundown and reeked of beer and cigarettes as he sat in the living room with a boy only a year older than himself. Aaron, his name was. I was supposed to be working on homework in the kitchen but kept finding myself distracted by peeling cornflower linoleum.

“I’ll give you this car for those six over there.” Aaron’s voice was sweet, sickly sweet, like a predator enticing its prey. Brendan’s face lite up�"it was the car he had wanted from Aaron for weeks.

“Sure!” I heard Aaron laugh as he caught him in his trap, taking the six cars and handing over the one.

“Wait, wait. No, guys. That’s not the way it works.”

I knew from the sour and piercing look on Aaron’s face that he resented my interruption of his brilliant plan. Brendan only looked at me through veiled eyes. I imagine he was waiting to see what would happened next, was wondering if he would get what he wanted so desperately. As Aaron took back his one car and pushed the others back, I saw a flint of disappointment of what was happening then confusion. My heart dropped. He did not understand that this boy was attempting to take advantage of him, that he saw some type of weakness in Brendan and resolved to exploit it. All Brendan saw was the loss. We left twenty minutes later and I resolved to never leave Brendan alone with that boy again. What Aaron saw as weakness was innocence, honesty, beauty�"everything he was missing. I knew I would have to protect him until he emerged from his cocoon. I would have to be his knight.

In these sequential and fragmented moments, I realized that it does not matter if I remember the child he was before the transformation. My memory of that time is useless, a dull black and white photograph without meaning. His change brought color�"vivid and vibrant�"that only he could bring. Instead of focusing on the absence, I remember the hugs he did give willingly, the smiles he shared only with those he loved, and the rare “I love you” that sprinkled my years. It was these memories that pushed out the other from before, taught me that it does not matter who he was or could have been. It matters who he is now and who he will continue to become.

Author's Note

Ignore the grammar issues (its a work in progress in a way).
any feedback is incredibly welcomed.