Living with Asperger's Syndrome
A teenager recounts her memories of growing up with Asperger's
By Hannah Fjeldsted
Editor's note: The opinions expressed herein are those of the author exclusively.
A teenager recounts her memories of growing up with Asperger's
By Hannah Fjeldsted
Editor's note: The opinions expressed herein are those of the author exclusively.
My name is Hannah Fjeldsted and I have Asperger's Syndrome. I was born in 1989 in Cambridge, Massachusetts, but have lived in New York since I was one, mostly in Scarsdale, where I've lived since I was eight. I was diagnosed with Asperger's Syndrome when I was about three or four years old and I've had support and therapy (OT, special ed, speech therapy, etc.) almost my entire life. Support and therapy has changed my life and has helped me to make tremendous progress. I'm a senior at Scarsdale High School and for Senior Options (an internship program at my school), I'm interning at Autism Speaks. I'll be graduating from high school in June. I'm going to college at Utah State University, where I'll probably major in environmental science. As part of my internship, I am writing about my experiences I've had with Asperger's. In this essay I will focus on childhood memories and self esteem issues. In a second part, to be published here later, I will discuss how support and therapy have made a difference in my life, as well as my hopes for the future.
I demonstrated some signs of Asperger's in my early childhood. I have many disturbing, as well as uplifting childhood memories of living with Asperger's. What's interesting is that I didn't even realize I was different from other kids until now, when I reflect on my childhood.
I would throw temper tantrums at an older age than most children did, for trivial reasons. For example, even when I was three or four years old, I would cry and scream whenever I would drop something. I also demonstrated the Asperger's symptom of repetitive behaviors. I would repetitively rip magazines and other papers for no apparent reason. Before I could use scissors, I would look through magazines and papers and just rip out whatever pictures I liked. Whatever pictures I didn't like or care about, I would just shred to smithereens. I also demonstrated the Asperger's symptom of isolation. Whenever other kids would play together on the playground, I would either sit on the bench or play in the sandbox alone.
I also had sensory problems, like sensitivity to noise. Whenever I was in a classroom and the kids were talking when the teacher was supposed to be talking, I would scream at everyone to be quiet. I thought the loud kids were just mean and insensitive with no consideration for people who were attempting to listen. It was even worse at church. I got so irritated and sensitive about peoples' interruptions to the church teachers that I sometimes I would run out of the classroom into the mothers' lounge and would refuse to come out until people would shut up. For a few Sundays, I stopped going to church class and went directly to the mothers' lounge. It took a great deal of effort for my church teacher and classmates to convince me to return to the classroom.
Fortunately, Asperger's never affected me academically, except in cases of needing extended time on tests, meeting with teachers, and handing in assignments. I was always an intelligent student who did my homework well, wrote good papers, and performed within the B range or higher. Asperger's was never a learning disability for me. It was a social disability. People often thought I was cold, mean, and condescending and I didn't understand why. I couldn't quite see what I was doing incorrectly. But, now when I reflect on it, I realize that back in those days, I was too outspoken and not very tactful. I would often say things that unintentionally insulted people.
But, I also remember some positive things about Asperger's from my childhood. I always had a good memory and loved memorizing facts, and I still do today. I remembered things people told me that they didn't remember telling me. For example, in fifth grade, a girl at my elementary school told me her middle name and later, when I mentioned it, she asked me how I knew her middle name and I reminded her that she had once told me. I also had, and still have, an adult-like vocabulary. I would use fancy words (barbaric, fascination, etc,) that kids my age in elementary school didn't typically use and I still do that today. My memory and vocabulary are two characteristics of Asperger's in which I take pride.
So, some of my childhood memories with Asperger's were disturbing, but I'm not ashamed of them because I can reflect on them and realize how much I have accomplished. The good memories I have of Asperger's give me something to take with me and be proud of. Overall, I think I had a memorable childhood.
However, Asperger's has caused me many insecurities and self-esteem issues because of its challenges, especially its social challenges. When I was twelve, I had a voice problem. I was straining my vocal chords to the point where I sounded unnatural and I didn't know how to control it. Sometimes, I would talk too loud without realizing it. People would tell me I was screaming and I would say, “What?” This problem greatly depressed me. Sometimes, I'd even cry about it. I couldn't say a word without internally freaking out about how my voice sounded. This problem did a number on my self-esteem because I didn't know any other kids at my school that had voice modulation problems. Everyone else seemed to talk normally all the time. I thought maybe this problem was the result of something wrong I had done in the past because I didn't know I had Asperger's at time or that my condition was hereditary. So, I thought it was my fault that I had this voice regulation problem and I hated myself for allegedly doing something that resulted in it. My parents told me not to get too self-conscious about it and not to stress out about it, but that didn't help me at all. I saw one therapist for about a year and a half, but that only helped me temporarily. Then, when I was fourteen, we found another speech therapist that helped me tremendously. I'm still working with that speech therapist today and I'm doing so much better. Sometimes, I've been worried that because of my difficulty in social skills, people might not want to talk to me. But, I've found that as I talk to someone, if I really make the effort, I can maintain the conversation and keep it going.
Another thing that lowered my self-esteem was the Learning Resource Centers, or LRC, reports. At the end of every year, the LRC would send a report evaluating my progress throughout the year. Even though they would write many positive, wonderful things about my improvement, I would only focus on the negative things they wrote, the things with which I was still struggling. They would always say I had difficulty with social skills. But, the end of this year was when I reached my boiling point with these reports. I realized that I had always believed that there was some ideal I had to reach, where I had surmounted every problem, had no more impairment, and there was nothing more on which I needed to improve, the point where I no longer met the criteria for Asperger's. Once I reached that ideal, I would be done forever! At this point, I was indignant and exasperated of hearing about what I still needed to improve on, even though I had been told many times about the enormous progress I had made. It seemed like no matter how well I did, there was always something wrong with me. It seemed like I was doomed to social impairment and deformity. I thought, “How can I be proud of what I've accomplished so far when I still have more to do? Sure, I might be improving and progressing, but if I haven't reached the ideal I'm striving for, I've failed! I can't help but regard it as absurd that I haven't reached that ideal yet. I'm eighteen for crying out loud! I've had support and therapy almost my entire life! I should be at neurotypical status by now! I know I've been steadily progressing, but I'm tired of steadily progressing. I'm tired of making progress year after year, only to be crushed upon discovering that I'm still not good enough! I'm tired of breaking down and crying over what problems I still have! I can't live like this anymore! I just want to wake up one day, stop meeting the criteria for Asperger's, and be a NORMAL PERSON!”
I've talked about these feelings to my mom, my LRC teacher, and my speech therapist. They've told me that there really is no such ideal and I know I have to accept that, but sometimes it's hard for me to accept that and sometimes I'm not sure I even want to. I came to the realization that there are two kinds of people in this world: the process people and the results people. The process people get the gratification in the act of doing something and the results people get the gratification at the completion, when they know that they've accomplished something. I'm definitely a results person in all aspects of my life and Asperger's is a genuine example of that. I tend to tell myself, “I will be complete when this process of growing and improving is over. I will be fully gratified when I reach that ideal of neurotypical status.”
Now, I know I have to surmount that tendency. I realize that the results aspect of my personality is too extreme and I need to incorporate more process characteristics into my mentality. I shouldn't degrade myself for not fulfilling some specific outcome, ideal, or objective I set for myself. I should just enjoy the progress I've made so far and look forward to the continuation of growth in the future. My speech therapist also told me that I chose to come as far as I have. She might have helped “facilitate the process,” as she put it, but ultimately it was my decision to undergo it. That had never occurred to me before. I was so accustomed to support and therapy that it just seemed like growth happened naturally. She also told me that if I didn't like some aspects of Asperger's, I could change them. So, in other words, I don't have to idly look upon my problems with ignominy. I can solve them on my own and I can take the initiative.
For those of you who have Asperger's and have self-esteem issues, my advice to you is this. Don't censure yourself. Be proud of what you've accomplished so far and look optimistically toward future accomplishments. You have to come to terms with your own self-worth and realize it yourself. If you are dissatisfied with your condition of Asperger's, do something about it. Just because you were born with Asperger's doesn't mean you don't have a choice in the matter of its impact on your life.
I demonstrated some signs of Asperger's in my early childhood. I have many disturbing, as well as uplifting childhood memories of living with Asperger's. What's interesting is that I didn't even realize I was different from other kids until now, when I reflect on my childhood.
I would throw temper tantrums at an older age than most children did, for trivial reasons. For example, even when I was three or four years old, I would cry and scream whenever I would drop something. I also demonstrated the Asperger's symptom of repetitive behaviors. I would repetitively rip magazines and other papers for no apparent reason. Before I could use scissors, I would look through magazines and papers and just rip out whatever pictures I liked. Whatever pictures I didn't like or care about, I would just shred to smithereens. I also demonstrated the Asperger's symptom of isolation. Whenever other kids would play together on the playground, I would either sit on the bench or play in the sandbox alone.
I also had sensory problems, like sensitivity to noise. Whenever I was in a classroom and the kids were talking when the teacher was supposed to be talking, I would scream at everyone to be quiet. I thought the loud kids were just mean and insensitive with no consideration for people who were attempting to listen. It was even worse at church. I got so irritated and sensitive about peoples' interruptions to the church teachers that I sometimes I would run out of the classroom into the mothers' lounge and would refuse to come out until people would shut up. For a few Sundays, I stopped going to church class and went directly to the mothers' lounge. It took a great deal of effort for my church teacher and classmates to convince me to return to the classroom.
Fortunately, Asperger's never affected me academically, except in cases of needing extended time on tests, meeting with teachers, and handing in assignments. I was always an intelligent student who did my homework well, wrote good papers, and performed within the B range or higher. Asperger's was never a learning disability for me. It was a social disability. People often thought I was cold, mean, and condescending and I didn't understand why. I couldn't quite see what I was doing incorrectly. But, now when I reflect on it, I realize that back in those days, I was too outspoken and not very tactful. I would often say things that unintentionally insulted people.
But, I also remember some positive things about Asperger's from my childhood. I always had a good memory and loved memorizing facts, and I still do today. I remembered things people told me that they didn't remember telling me. For example, in fifth grade, a girl at my elementary school told me her middle name and later, when I mentioned it, she asked me how I knew her middle name and I reminded her that she had once told me. I also had, and still have, an adult-like vocabulary. I would use fancy words (barbaric, fascination, etc,) that kids my age in elementary school didn't typically use and I still do that today. My memory and vocabulary are two characteristics of Asperger's in which I take pride.
So, some of my childhood memories with Asperger's were disturbing, but I'm not ashamed of them because I can reflect on them and realize how much I have accomplished. The good memories I have of Asperger's give me something to take with me and be proud of. Overall, I think I had a memorable childhood.
However, Asperger's has caused me many insecurities and self-esteem issues because of its challenges, especially its social challenges. When I was twelve, I had a voice problem. I was straining my vocal chords to the point where I sounded unnatural and I didn't know how to control it. Sometimes, I would talk too loud without realizing it. People would tell me I was screaming and I would say, “What?” This problem greatly depressed me. Sometimes, I'd even cry about it. I couldn't say a word without internally freaking out about how my voice sounded. This problem did a number on my self-esteem because I didn't know any other kids at my school that had voice modulation problems. Everyone else seemed to talk normally all the time. I thought maybe this problem was the result of something wrong I had done in the past because I didn't know I had Asperger's at time or that my condition was hereditary. So, I thought it was my fault that I had this voice regulation problem and I hated myself for allegedly doing something that resulted in it. My parents told me not to get too self-conscious about it and not to stress out about it, but that didn't help me at all. I saw one therapist for about a year and a half, but that only helped me temporarily. Then, when I was fourteen, we found another speech therapist that helped me tremendously. I'm still working with that speech therapist today and I'm doing so much better. Sometimes, I've been worried that because of my difficulty in social skills, people might not want to talk to me. But, I've found that as I talk to someone, if I really make the effort, I can maintain the conversation and keep it going.
Another thing that lowered my self-esteem was the Learning Resource Centers, or LRC, reports. At the end of every year, the LRC would send a report evaluating my progress throughout the year. Even though they would write many positive, wonderful things about my improvement, I would only focus on the negative things they wrote, the things with which I was still struggling. They would always say I had difficulty with social skills. But, the end of this year was when I reached my boiling point with these reports. I realized that I had always believed that there was some ideal I had to reach, where I had surmounted every problem, had no more impairment, and there was nothing more on which I needed to improve, the point where I no longer met the criteria for Asperger's. Once I reached that ideal, I would be done forever! At this point, I was indignant and exasperated of hearing about what I still needed to improve on, even though I had been told many times about the enormous progress I had made. It seemed like no matter how well I did, there was always something wrong with me. It seemed like I was doomed to social impairment and deformity. I thought, “How can I be proud of what I've accomplished so far when I still have more to do? Sure, I might be improving and progressing, but if I haven't reached the ideal I'm striving for, I've failed! I can't help but regard it as absurd that I haven't reached that ideal yet. I'm eighteen for crying out loud! I've had support and therapy almost my entire life! I should be at neurotypical status by now! I know I've been steadily progressing, but I'm tired of steadily progressing. I'm tired of making progress year after year, only to be crushed upon discovering that I'm still not good enough! I'm tired of breaking down and crying over what problems I still have! I can't live like this anymore! I just want to wake up one day, stop meeting the criteria for Asperger's, and be a NORMAL PERSON!”
I've talked about these feelings to my mom, my LRC teacher, and my speech therapist. They've told me that there really is no such ideal and I know I have to accept that, but sometimes it's hard for me to accept that and sometimes I'm not sure I even want to. I came to the realization that there are two kinds of people in this world: the process people and the results people. The process people get the gratification in the act of doing something and the results people get the gratification at the completion, when they know that they've accomplished something. I'm definitely a results person in all aspects of my life and Asperger's is a genuine example of that. I tend to tell myself, “I will be complete when this process of growing and improving is over. I will be fully gratified when I reach that ideal of neurotypical status.”
Now, I know I have to surmount that tendency. I realize that the results aspect of my personality is too extreme and I need to incorporate more process characteristics into my mentality. I shouldn't degrade myself for not fulfilling some specific outcome, ideal, or objective I set for myself. I should just enjoy the progress I've made so far and look forward to the continuation of growth in the future. My speech therapist also told me that I chose to come as far as I have. She might have helped “facilitate the process,” as she put it, but ultimately it was my decision to undergo it. That had never occurred to me before. I was so accustomed to support and therapy that it just seemed like growth happened naturally. She also told me that if I didn't like some aspects of Asperger's, I could change them. So, in other words, I don't have to idly look upon my problems with ignominy. I can solve them on my own and I can take the initiative.
For those of you who have Asperger's and have self-esteem issues, my advice to you is this. Don't censure yourself. Be proud of what you've accomplished so far and look optimistically toward future accomplishments. You have to come to terms with your own self-worth and realize it yourself. If you are dissatisfied with your condition of Asperger's, do something about it. Just because you were born with Asperger's doesn't mean you don't have a choice in the matter of its impact on your life.
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