Non-fiction / Autism: Life from the Inside (Analysis)
“I want to go home,” I declared, standing in the middle of the kitchen as I watched my mom writing down appointments on the calendar tacked to the wall.
“But, you are home”, she slowly replied, turning around as far as she could while not moving her right hand from the calendar.
“I know,” I mumbled, walking out of the kitchen. Inside, I was angry with myself for blurting out that thought I had been harboring for months. I knew I was at home, but to me, I didn’t feel like I was, or that I belonged-not anywhere actually. All I knew about those feelings was, well, nothing. I didn’t even realize that feelings were behind my thoughts of being lost and out of place. I was only six or seven at this time, too young to realize that what I desired was to die. Everything I had learned came from books and none of them covered anything like that.
My memories before this are scattered pieces, unable to complete the outline of my life. I remember things like crying and fighting my mom when I had the chicken poxes at age three because I wasn’t allowed to go to the Wisconsin Dells annual balloon rally. I remember placing the bag of small rubber bands I was supposed to use to help me learn how to speak. Or, the time my sister and I fighting because my stuffed animals kept going on her side of the bed. Being on a swing set and being yelled at when the next-door neighbor’s kid walked behind me, causing them to be knocked over. These snapshots are fairly clear in my mind. What are missing are the feelings I should have had over those events. Instead, looking back, my feelings were limited to confusion, anger, and frustration. I never fit in and never felt as if I belonged. I know now that how I reacted was normal for someone like me. What I saw was always different from what everyone else saw. Most everything I did was only though enormous effort, and a lot of luck, as well as patience on my moms part when she tried to teach me what most pick up without thought. For me however, nothing came easy. Not talking, walking correctly, or basic skills like getting dressed or tying my shoes. It is no wonder why at such a young age that I would desire to die considering this. And things only got worse for me as I grew older.
The best way to describe my life is my next clear memory that took place during the summer when I was eight years old. There were two fudgeiscles in the freezer and I was allowed to have one. So, I opened the freezer and grabbed on, but for no reason I know of, I felt some sort of flaw or it wasn’t how I wanted it. I crumbled it up as though it was a piece of paper and threw it into the freezer. My breathing was somewhat quick at this point and my heart started racing. I wanted one so bad and I tried to tell myself this was the last one, it was ok if it wasn’t perfect. I reached in to the freezer again but something about it made me crumbled it up, throw it into the freezer, and slam the door shut. I felt as though something inside of me was scratching and clawing at me, making me want to scream. I tried so hard to calm my racing heart, slow my breathing and catch my breath, stop that thing from emerging. I don’t if I won the fight that day; the last think I remember was how terrifying the situation was how desperate I was to control the thing inside of me, but knowing it was pretty much hopeless.
Always, it was so terrifying to feel myself slipping away, losing control over myself, despite me fighting and struggling against it. Today, it is still scary when it happens and I have always, will always worry about hurting others because I cannot always stay in control. Yes, today it is much better because it happens so much less, but it still happens. I don’t know how to let that worry go.
I am not sure when, but sometime before or at the start of second grade, I was sent to the Children’s hospital near Madison for tests. Only one test was initially scheduled, but after my regular hearing doctor thought I was going deaf, I also had to go to a hear test. I was in this white space ship like tube with a wall full of monitors. There was one person on each side of me and I was hooked up to a machine. I was so bored, I started looking at one of the monitors that had a lot of weird lines. In that monitor I saw a bunny but when I laughed and tried to share it, I was hushed immediately.
After this, I had these wires hooked up to my head with glue that burned my noise. After they were attached, I was told to lie down in a dark room and hooked up to more things. I was finally in a hospital room by that afternoon and I could see a helicopter taking off thanks to my dad telling me to look out the window. At first, I thought it was so cool to be there cause I got to eat whatever I wanted to and after supper, someone came in to play games with me until my parents got back from supper. However, at bedtime when I tried playing hide and go seek with the camera that was watching me by going from one side of it to another, I was told I had to go to bed cause game time was over. Looking back, I wasn’t scared that I was left there alone. I didn’t like being there without mom but she had said that the sooner I got to sleep, the sooner morning would come and they would be there in the morning again. I believed her because of the fact that I figured that what people said is what they meant. I took things always at face value, but this was the first memory I have of an example of this.
The two tests done revealed nothing was wrong with my hearing and I didn’t have seizures, which opened up the possibility of other things. It took until I was ten for my parents to find out exactly what was wrong with me. I not only had low muscle tone, poor balance and coordination, ADHD, intermittent explosive rage disorder, and anxiety, but three other major things as well. The other diagnoses were probably the most trying and difficult for my parents to deal with since not much was known about them. In the end, I was also diagnosed with sensory integration dysfunction, organic mood disorder, and infantile autism. Sensory integration dysfunction meant that all of m senses were a lot more sensitive or a lot less sensitive than the average person, causing problems to the point where clothes could feel like they were strangling me even though they were two sizes too big, or where I could not eat certain foods without gagging on them. I also struggled with loud noises and crowds of people. Organic mood disorder turned out to be a fancy way of saying I had bipolar disorder, but was caused by another psychiatric condition-the autism. My moods would swing to extreme highs and the next minute, I would grow extremely depressive. However, I believe the autism was the worst for my parents to deal with. I was often in my own world, unable to hear or notice what was going on.
I was overwhelmed with all of the appointments and everything else that was required of me. However, what I was required to do didn’t end there. At the beginning of forth grade, I was moved from a parochial school to a public school, so I could be in an ED, or emotionally disturbed, classroom. There, I could escape from normal classes when it got too much or whenever I had a meltdown. It also meant that I could get extra help academically by having accommodations provided in a regular classroom, such as a note taker or extra time on tests. If I could not handle a normal classroom, or if I was too far behind, I had simpler, more basic classes in the ED room. Supposedly, this set up was designed to help take off some of the stress and hopefully, prevent so many meltdowns from occurring at school. It didn’t work however. One time, I became so overwhelmed, I began losing control of myself. Once again, I had no idea why. I ran out the ED room, out of the school, and out onto the road-which was unfortunately also a highway. I didn’t have any idea where I was going; I was just going, trying to escape, from school, myself, and just everything in general. I guess I felt that if I ran fast enough and far enough, I could regain control of myself. In one way or another, a lot of time was spent trying to escape from my world, and myself, though usually it was by reading.
The time I transferred to a public school was also the first time I was admitted to a psych ward. At first, I was terrified of it, but soon I grew to love it there. Every day was the same as the previous. Even weekends were similar to weekdays. I was able to participate and feel somewhat included in activities because I was actually encouraged to. I hated being away from home and my parents, but I loved the routine. However, that first time was soon followed by a second visit and because I showed that I didn’t mind coming back, I was told I couldn’t have contact with people and that I had to stay in the room by myself. I guess the other kids there felt bad because many papers were pushed under my door one day, with artwork and notes of encouragement. I liked it because nothing like that had ever happened to me before.
Seventh grade was the first time I was aware of just how much other kids didn’t like me. It was also the first time that they used more than words to hurt me. They began throwing objects like money and pencils at me; when they did this, they would also point and laugh at me. I felt as if I was a zoo animal, trapped inside of a school instead of a cage. I figured it wasn’t there fault they did what they did, I felt as though I deserved it. After all, I was different-I could fly into an uncontrollable rage with hardly any warning. I would have to leave school because of this and I was always ‘sick’ a lot or had to have ‘special treatment’ because I couldn’t deal with normal classes all the time. I believed all this because I knew they treated me the way they did because of my behavior and since I believed the doctors, I blamed myself. The doctors were always telling me that if I just tried, even a little bit, I could control myself. After so many years of hearing that, of them telling me repeatedly that I wasn’t trying hard enough, I wasn’t doing trying hard enough, that I would never make it anywhere because of everything, their voices became part of me. My parents didn’t know how to offset this because deep inside, they thought that I could control some of it. They knew I needed help, but they didn’t know how to stop me from behaving as I did. I knew it took a toll on the whole family and I just felt so guilty over everything I did, or even things I caused, like the throwing of words and objects at me by fellow students.
Looking back, I honestly don’t know how my parents had the strength to keep working with me, especially since they too were blamed for how I was. In addition to that, my parents were endlessly encouraged to just put me in a permanent mental facility and to basically forget about me. Despite the devastating affect my disabilities had on everyone, my parents kept fighting to get me any help that might make the smallest difference. Everything they wanted to do, whither it was to change my medications or have me in a short-term psych ward for intense therapy, my parents were meet with opposition. My doctors didn’t seem able to fathom why anyone would waste their time, trying to help an impossible child who had no future. Eventually however, when I was in eighth grade things got so bad with me that my parents finally thought that the doctors were right that they began looking into private boarding type schools to place me in. This was done to keep me from becoming a ward of the state, which the doctors threatened both my parents and I with. For me, eighth grade was also one of the worst years for me as well.
The teasing and object throwing only increased. Although I had been in and out of the psych ward a lot, it had always in the summer before. However, this time, I spent the three weeks before spring break as an inpatient, partly due to the fact that mom ordered the doctors to take me off all my medications because she knew they weren’t working, even though they said they were (she was right). Even though I was slowly taken off my medications, I still suffered pretty bad withdrawal. It was like a flu that came and went without warning. The worst part of the stay however was after one of the male nurses (who had taken off for vacation one week into my stay) came back. It was two weeks later and I guess he thought I would be gone by then. He asked me why I was still there, why wasn’t I trying to get better. Basically, he tried, and succeeded, in making me feel as though I was the worst person he had ever encountered. I was already worried over the fact that for the last two years, I was told that if things didn’t change, I would end up in a long-term psych ward, placed in a group home, or would go to the long-term psych ward, than the group home. They continually reminded me of this, as if it would motivate me to get better. I was sure this nurse would have done that just so he no longer had to deal with me. Besides this constant worry and fear from them and myself, I felt so alone, empty almost, because I didn’t know or understand what hope was. I wasn’t ever really given any. My parents would say that they believed in me, but even they weren’t positive and I knew that they were looking for a Christian institute for me. The new medication I was put on thought put me in control of myself for the majority of the time. For me, this was also the very first time I really knew what I had done and how it affected people. I believed those doctors that said I was responsible.
Eighth grade was also memorable for another reason. I had been shaving my legs at one time and cut myself. It was small, no big deal, but I remember it not hurting. It actually felt good to me. Soon, I tried cutting on my wrists and that felt even better. I started cutting on my shoulders as well. I was caught a few months later, though I told my mom and shrink I had only just started it when I was caught. My razors were taken away and they thought that had stopped me. In reality, I just learned other ways to hurt my self, like using keys to scratch myself or my nail clippers to cut skin. After I did this, I would feel so good, as if I was floating on a cloud away from everything and for a while, maybe two minutes or maybe ten, I didn’t feel anything at all. I would be numb. That emptiness was the closest thing to happiness for me at that time. Even though it would hurt as it healed, I felt as if I deserved the pain for everything I had done, everything I caused to happen.
Even though I had gotten on the right medication, soon the depression caught up with me. I began cutting even more, I became more reckless in the cuts as well, by cutting vertically not horizontally. I wasn’t enough to dull the memories, suppress the terror or horror, it was enough. I just didn’t want to feel, to be anymore. I began pulling out my hair, beating myself up. Mom never noticed any unusual bruises because I was always careful not to hit myself where they would show. If I missed, well, I was so accident prone it was unusual not to see bruises on me. Mom did notice the bald spot where I pulled out my hair, but just thought it was an allergic reaction since my sister had gone through that. After that, I was careful to pull only where it would not be noticed. I didn’t do these things every day, but enough that I quickly learned how make excuses, how to avoid my parents and where the cuts would not be noticed. I also began hording over-the-counter pills because of the fact that my family had so many different prescriptions, allergies and needs that there was always plenty to take without mom noticing. I would take fistfuls of those pills I had saved up whenever my parents would take a day-trip and no one else was home (meaning around once or twice a month).
Eventually, I came to a point where after a time I had taken a bunch of pills, leaning on the sink for support as usual that I looked up into the mirror. I had always locked myself in the bathroom just in case and had always avoided the mirror, at all times. But for some reason, when I raised my head, my eyes and reflection captivated me, almost as if it held me hostage. I really didn’t feel as if I was looking at myself. For I was staring at someone whose eyes were so deep with pain, yet deadened, that I couldn’t recognize who I had become. To look into someone who is soulless and just realized it just intensified that pain. I saw what I had become and I hated myself even more for it.
It was if time stood still for a split second as I stood looking at myself. I felt this amazing calm come over me, as if I was dipped into a hot bath and had been soaking for hours with the most wonderful chocolate and the best book I had ever read. It was an undesirable light feeling, the kind you get when you are on a roller coaster, are experiencing negative gravity, and are lifted out of your seat. Yet, these descriptions cannot even come close to the actual feeling, it was so wonderful, memorable, and scary. I felt as if I had been granted knowledge of what takes place after death, I felt the torment and the peace that could be. At that moment in time, all doubts I had ever had of if God existed or not disappeared. I knew there was a heaven and a hell. I didn’t get this knowledge through pictures, it was just as if it was a lesson I was taught and had memorized.
choose to die. I knew I didn’t have the time to come up with a plan and fulfill it before my parents came home though. So, I came up with a plan later to do at a time when no one was home and not expected home for hours. I would take as many pills as there were in the house (which was a lot considering the number of medical problems in my family), alcohol, and a sharp knife. I would lock myself in the bathroom, take the pills with the alcohol, as much as I could. Than, when I began feeling sleepy from the effects, I would stab the knife as deep as I could into my arm and slash my wrists.
I thought I deserved to die and go to hell. I felt as if it was the only appropriate punishment for who I was and what I had done, as well as who I could be again. I figured my parents may be sad for a day or so because of the shock, but soon after, they would realize how great it was to be unburdened of someone like me. Someone who couldn’t control their emotions, who did horrific things to them, someone who lived with a monster inside that no matter how much they tired, they couldn’t control it. I figured they would be more upset than sad at the fact that they had to clean out my room. I believed so deeply that I deserved that punishment and it would be best for all, that to this day, I feel chilled by that knowledge.
However, around that time, Despite doing nothing to encourage them, they kept trying, and almost against my will, we became friends. Near the end of my sophomore year, I gave into M nagging me to go with her and Z to church. Going with them actually did help me out, despite my misgivings. I began realizing that I couldn’t help that I was born with so many problems, nor the affects it had on those around me. I still deal with these issues, but not as frequently or as bad. That summer and junior year was a blur for me. For the first time, I had friends who I would hang out with, doing whatever. I even began talking with A, someone else I had known in elementary school. I was still struggling with a lot, things finally seemed to be looking up. I was doing great in my classes even. I thought that things would just continue getting better.
The summer before my senior year, my brother moved back home until his wedding. When alone with him, somehow I would cause his temper to flair and I was so scared I called A, a person I had known in elementary school and had begun hanging out with again my junior year. Our friendship was sealed because in a way, she saved me one night when I was putting laundry in the dryer, as my brother put his in the washer. I put the shirt in the dryer and was starting it, when my brother punched me fairly hard in my arm. I left as soon as I could, but he followed me, yelling at me, calling me every name in the book, clapping his hands so close to my head I could feel my hair move. He backed me into a corner by the steps, put his arms on either side of me, and proceeded yelling so loud and angrily, spit flew in my face.
I got my wits together enough to duck under him, run up the stairs, and grab the phone before barricading myself in my room. I called A and she stayed on the phone until my parents came home. I told them what happened and my brother said I had shoved him, but they really couldn’t do nothing since it appeared it took both of us to create the situation. Besides this, the beginning of my senior year was not bad. However, right before homecoming (which took place a month or so after school began), M guilt tripped me into ‘dating’ Z and A just was like what’s the harm? The only thing that changed between us however was the fact he became extremely clingy and emotionally dependent on me. I couldn’t deal with it so after the dance, I told him we should just go back to being friends. He said that was fine, but he continued to do as he did before and I had enough problems of my own and couldn’t deal with his as well, so I told him I no longer wanted to be friends. This is when he began stalking me. I told M that I was going to report him to the school’s police liaison officer, but she couldn’t understand why I couldn’t deal with it. I was told she had had to put up with that behavior as well, but after letting him back in, he was annoying, but fine. I didn’t, and couldn’t deal with it, so I told her that my decision was final. She grew very angry, telling me just how horrible I was to do such a thing to him. Despite this, I did report him and had to continue to do so until the end of high school.
Maybe it was because of all of this that was going on or my own ignorance or blind trust or a combination of these things that I at first did not realize what A was doing to me. It started with me tutoring her, teaching her the material, than I began doing her homework and than her tests (she was home schooled). I couldn’t figure out how to escape because she kept threatening to revel the secrets she had sworn never to repeat. I always know one reason I never had the courage to stand up to her for months was because my parents saw me hanging out with a friend, having sleep-over’s, and having fun. I didn’t want to disappoint them by letting them know how stressed out and worried I was all the time over what was taking place in our friendship. I finally got the courage to stand-up to her shortly after high school ended. For me, I felt like I was on a high after graduating because I felt like I had escaped hell. I no longer wanted to be sucked back in by someone like her. I felt so proud of myself because even when she threatened telling my parents things I wasn’t ready to tell them, I lied and told her I had already done so, taking away any power she had over me.
My entire life had been full of struggles and after high school, I felt full of hope. I began dating someone who understood me and thought things would finally settle down. Perhaps things might even look up. Although that relationship ended horribly, and I suffered a lot, over the past year, I realized that everything in my life has happened for a reason. Whenever I need someone to help save me from myself, I had someone. It seems like after high school, I was told that I was finally ready to take care of myself. It may have taken me two years of a horrible relationship to realize that, I am finally able to start doing what is best for myself and stand up for myself. Over the past year since that relationship has ended, I have learned a lot about myself. I realize that my disabilities will always be problematic for me, but there are also a lot of chancees to help others. I was diagnosed with a lot of problems many other children are being diagnosed with lower-functioning autism. Since I was diagnosed with the same thing at a time where there was no treatment plan, besides locking the individual up, I am able to offer the parents help and hope for their children’s future.
All the struggles I encountered in life, both from life itself and from my disabilities, have helped me to be a strong individual as well. I am also grateful for learning to deal with my disabilities, especially now that I have been diagnosed with Fibromyalgia. This condition is invisible, but effects every part of my life. Everyday, I have to deal with extreme pain that comes from muscle twitches and tightening, headaches, stiffness in my joints, pain that seems to radiate from my very bones. Everyday, I have a pins and needle feeling when parts of my body falls asleep even when I am moving. Everyday, I feel so tired, I just want to crawl into bed; yet, I also know that it will take a long time to fall asleep, I will wake up constantly, and will wake up feeling run off by a truck numerous times. Everyday, I struggle remembering simple things like how to tie shoes or where I am suppose to be. Everyday, I struggle just to function normally. And yet, I am thankful for those days when I just experience those things. I know that I can experience flare-ups that can last hours or days, and I also know that this invisible disease will get worse every year, making me thankful for those everyday base-line pain and complication scale.
I also know that when one of my ‘disabilities’ is worse than normal, it will cause all my other disabilities to worse. Then, because those disabilities are worse, everything else is worse. It is just one vicious cycle, one that is never-ending and that I cannot stop from taking place. I have reprieved, but they are always too short and far between. I have fought so long and so hard that at times, I just want to stop and give up. But I cannot for some reason. I am a survivor and will continue fighting to stay a survivor until I am finally taken home.
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This was an extremely heart warming and courageous story of a individual who has waged a war with their self only for it to end in tentative draw. You showed the undying spirit of a parents love as well as your determination to rise above the fate that some would impose on you. You were able to express your trials in a non-emotional and objective way so that the reader could empathize with you and not pity you. Yours is a story that will help others to rise above rather than be pulled down by their circumstances. My hats off to you.
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I had enough information to feel empathy with this writer. I liked this piece very much. I felt what he felt. I only found one typo (suppose=supposed). There may be more, but it would take another read for me to be sure. This is a very good piece. I was hesitant to read it at first, but once I got into it, I was sold. Not a terribly interesting subject to general readers, but there is an audience for this material.
this should open peoples eyes as to what is felt not only by you but many more i am sure i would send it to the austism groups that are out there trying to get people to understand. sometimes people will only listen when the truth is really hard to swallow. good luck and God Bless you.
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Your work is compelling reading. As a person who has struggled with a disability, I can really relate to it. However, there are several grammatical errors that need to be corrected. I suggest editing it a couple of times yourself, and then finding someone else who can also edit it for you.
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