Inside Out: Through the Eyes of Autism
By John Scott Holman I don’t know if I am standing, sitting, or lying down – it is dark and I cannot find my body in the dark. Are my eyes open? There is a bit of light coming from somewhere. Light is good. A little light chases away a little fear. The light may get bigger. When the light gets bigger I won’t be alone. If I scream the light may get bigger. If I scream she will come. I scream. Nothing… She isn’t coming. It could be dark forever. Will it be dark forever? I wait in my crib for the light to get bigger. Sometimes I scream. I am afraid, and I am alone. *** “I always tell the truth, even when I’m lying…” I scribble these words across the wall of my room. My pens will be confiscated as soon the staff realizes I’m misusing them. I don’t care. I don’t care about anything.
How many days now? A naked man wanders into my room and begins rummaging through my drawers. I stare at him. He turns to me. His eyes are empty, as if they aren’t used for seeing at all. He scratches his chest and leaves. A nurse catches him in the hallway, takes him by the arm, and guides him back to his room. I reach beneath my mattress and pull free a crumbling Valium, carefully enfolded in a bit of paper. I need to quiet my restless mind. How many days? Does it matter? I am not normal. I am clearly insane and always have been. They won’t be letting me out of here any time soon… I am afraid, and I am alone. *** Though seldom aware of my emotions, I do realize when I am afraid and when I am not afraid. I know when I like the way I’m feeling and I know when I do not. I’ve also learned what I’m supposed to be feeling, and how to act accordingly. I’ve become quite skilled at faking emotions. Because of this, much of my life has been a well-meaning lie. I don’t know where the truth ends and a lie begins. I do not like the way this makes me feel. The world is a frightening and confusing place, particularly for someone with autism. As a society, we claim to value honesty. However, people seldom appreciate the truth. You are expected to say what others want to hear, and think and feel only what is deemed appropriate. From birth on, society grooms us to be players in a complex and empty game, to know the truth, yet spin an intricate web of half-truths and little white lies. The autistic mind frequently resists participation in this charade. I’ve always felt like the only kid at the puppet show who can see the strings. If I insist on pointing them out, I am shunned and ridiculed. I’ve never played well with others, and I don’t have much common sense. Albert Einstein, who many speculate to have been autistic, once said, “Common sense is the collection of prejudices acquired by age eighteen.” When someone speaks to me of their emotions, I pretend to understand, and respond as I’ve been trained to. I think of all I’ve learned about the human brain, and try to discern that person’s neurological state. I can’t quite grasp the meaning of “happy” or “sad,” though I do understand the chemical elevations and
deficiencies necessary to produce these states. The DSM-IV describes this symptom of Aspergers, rather vaguely, as a “preoccupation with parts of a whole.” I process information from the inside out, seeing the trees long before the forest. This is why I’ve never appreciated a sunset, yet can spend hours staring at Picasso’s lovely cubist maidens; I see the world in fragments. Few people think as I do. I try to communicate as best as I can, yet despite my verbosity, I often feel that I’m speaking a language only I can understand. This is not only awkward, but dangerous, as many people are deeply offended by the slightest misstep in the social dance. Out of touch with my emotions as I am, I’m certainly glad I’m not as oversensitive as some. There are countless constantly shifting social rules involving posture, facial expression, appropriate and inappropriate topics, when to alternate topics, etc… For most people, adherence to these rules requires only subconscious effort. Social interaction is infinitely complex, and I believe many are offended by my behavior without even knowing why. Likewise, most people have no idea how they’ve managed to upset me. We aren’t playing by the same rulebook. *** I’m standing in a long, empty hallway. The teacher sent me to wait out here. She is mad at me. Why? The hall echoes with the far away laughter of children. They are all so far away… I feel like I’m underwater. I stare at my shoelace. It used to be very white, like teeth on television. Now it is gray like dishwater, and frayed at the end. I like to look at my shoelace. I like to see things close up. It helps me to forget about the underwater feeling. I hear a basketball bounce somewhere outside. It is a little deflated… I can tell. How can so much quiet be so full of sounds? Teacher is mad at me. I want to know why. “You know why,” is what she told me. She is lying, because I don’t know why. Why would the teacher lie? I’m standing in a long, empty hallway. I am afraid, and I am alone. ***
At a young age, I began to study characters in film, hoping both to escape the pressure of my own world, and better understand social interaction within it. It was during this time that I realized something remarkable; movies granted me immediate access to a wide spectrum of human emotions. I felt the joy, and pain of romance while watching “West Side Story,” was heartbroken, enraged, and uplifted by “To Kill a Mockingbird,” and learned of human friendship, and emotional vulnerability by watching, ironically, “ET: The Extra Terrestrial.” The emotional situations onscreen were distant enough to be nonthreatening, underwhelming enough that I could actually experience them in the moment. Movies made me feel less alone… almost human. But movies weren’t real. I still couldn’t respond emotionally to my own environment, not at the appropriate times. Instead, my feelings would build up, until finally, overwhelmed by the pressure, and triggered by some small interruption in my routine, I’d suddenly lash out, breaking things, cursing, and injuring myself. This emotional displacement and instability, along with my eccentricities, and obsessions, made social interaction seemingly impossible. I tried to reach out, but my attempts only forced me further into my mental prison. I just wasn’t normal. As an adolescent, I embraced my differences in the only way I knew how; I flaunted them. At 16 years-old I was a sullen, defiant, later-day James Dean with a chip on my shoulder and a quiet, blue flame burning in my brain. Initially drawn by my good looks and boyish charm, my peers would soon be confused and repelled by my urgent need to shatter their illusions. I was dangerous, a freak and a heretic, everything Sunday school, and Nancy Reagan warned you about. Misdiagnosed with Bipolar Disorder, I was forced to take countless dangerous and unnecessary medications, which resulted in horrific side-effects, and only increased my sense of confusion and isolation. I trusted no one. My world was claustrophobic, nightmarish, threatening… I began using street drugs and attempted suicide numerous times. I was frequently confined to mental hospitals. All the while, doctors insisted that I was Bipolar, though I’d never had a manic episode in my life. Not once was Asperger Syndrome suggested. ***
I brush my teeth in the dark to avoid seeing my empty eyes in the mirror. I’m smoking a cigarette. I’m smoking a cigarette, and brushing my teeth at the same time. I miss my mother. I laugh, and the sound is like breaking glass. Why am I laughing? What am I feeling? I’m blank. I’m a ghost. Why can’t I just be normal? They all want me to be normal. I don’t want to be normal. I don’t want to be anything. I don’t want to be… I slide down the wall and sit on the cool floor. My cigarette goes out. I’m left in the dark. Nobody remembers moments like these; moments afraid, and alone in the dark. They don’t matter. Moments like these are all I know. I am afraid, and I am alone. *** At 24 years-old, I was prescribed a stimulant for my ADHD (stimulants had typically been withheld, based on the belief that they would exacerbate my “mania”). With this medication I improved dramatically. When I say that I improved, I mean that I was no longer getting into legal trouble or being hospitalized. I was still obsessive, awkward, and socially inept. I figured my symptoms were merely those of severe ADHD and continued taking my stimulants. I still felt distant, disconnected, as if no amount of words could ever build a bridge between myself and others. For the most part, however, I was happy. It had been a long time since I’d been happy. I didn’t feel that I deserved happiness, and tried not to consider why. The medication gave me a modicum of confidence; I stopped pretending I was like everyone else. I stopped trying to fit in, and grew closer to the happiness that was so alien to me. I was learning to accept myself, but I had yet to understand myself. *** I’m doing better. I like my new pills. I realize that I have a remarkable mind. It may or may not be a dysfunctional mind, but regardless, I know that it is one so extraordinary, so labyrinthine that I become lost within it, wandering alone
through an interior landscape that defies description. I know that people are trying to reach me from the outside, but they are just so far away… I don’t understand people and have no regard for their concerns. I try to be empathetic, but how can I understand someone else’s emotions when I can’t even recognize my own? I do my best to be polite, and pay attention to others, but I always feel that I’m putting on a show… that I am lying. I am afraid, and I am alone. *** It has been suggested that I might have Asperger Syndrome. I’m not sure how this makes me feel. I laugh, but I don’t think anything is funny. I read over the diagnostic criteria. My stomach drops. I think I will be sick. I continue reading but my hands are shaking. I realize that I am crying. I’m crying, but… …but I’m not a monster. I’m not evil. I am different… and that is OK. I don’t have to pretend anymore. I don’t have to lie. Not like before. In this instant I experience every conceivable human emotion. I am happy… and I deserve to be. I am angry… and I am justified. I am disappointed… and I will get over it. I am excited… and life is full of promise. I am afraid… but I am not alone. LEAVE A COMMENT by JOHN SCOTT HOLMAN on APRIL 18, 2012 • PERMALINK Posted in AUTISM Tagged ADHD , ADULT AUTISM , ASPERGER , ASPERGERS , AUTISM , AUTISM AWARENESS , BLOG ,DIAGNOSIS , JOHN SCOTT HOLMAN , RELATIONSHIPS , SCHOOL