Asperger Syndrome and Me

In June 1986, when I was 20 months old, an examination by an ENT specialist revealed fluid buildup in my middle ears which was affecting my hearing, and tubes were inserted to drain the fluid. At that time, I had a vocabulary of about five words. Later that year, my parents enrolled me in a nursery school, hoping that being in an environment with many other people would help me improve my verbal communication skills, but it did not work out as they had hoped. I showed extreme separation anxiety; every day that I went, I cried for about 20 minutes after my parents had left. Also significant was the fact that I kept to myself, not playing with any of the other children. After about three and a half months, I was removed from the school; it was far too stressful for me, and I had shown no significant improvement in my communication skills.

By March 1987, when I was 2 years 5 months old, my vocabulary had grown to about 30 words, but I was not using them in a meaningful fashion, and I rarely used word combinations. It was at this time that, at my parents’ request, my pediatrician referred me to a speech/language pathologist. On the Bayley Scales of Infant Development-Mental Scale, I scored low on language items, but my scores on nonverbal items were more age-appropriate.

Although my language scores were low, it should be kept in mind that testing my receptive language skills was very difficult, because I was an extremely stubborn child. I have a stubborn streak now, but back then, one was hard-pressed to get me to do anything that I had not voluntarily chosen to do; I had a short fuse and often threw temper tantrums when I did not get my way. My need to control my environment probably originated as a response to some major changes which had taken place in my home environment when I was between one and two years old: we moved to a new house, my mother got a job outside the home, our nanny of one year left us, and we had three different nannies within a three-month period.

With the help of early intervention programs, I eventually was able to attend a Montessori nursery school and public kindergarten.

It was not until I was eight years old that I was formally diagnosed with Asperger Syndrome, even though I displayed all the characteristics thereof. (The condition was not added to the DSM-IV until 1994.) I felt strangely relieved when I found out, because now I knew there was a reason and a name for my problems; I was not just “the weird kid.” Around this time, we had moved from Massachusetts to Maryland, and I began grade school. I attended regular first, second, and third grade, and my parents worked closely with my teachers to help me get through with as little stress as possible. Whenever my class had a field trip or other special event, my mother was involved – for example, she chaperoned all field trips. This was arranged for my sake, because it was very hard for me to handle changes in routine on my own; a familiar presence made it much easier to adapt to changes when necessary.

In spite of my issues with handling a school environment, I was a good student overall. My full scale IQ at the time was 123 (people with AS often have above-average intelligence), and I usually got good grades on my schoolwork, especially in math and science.

Individuals with AS often have one or two areas of intense interest, sometimes bordering on obsession. I am somewhat unusual in that I have, at different times, displayed such an interest in many subjects. For example, in first grade, I was fascinated with the solar system; a year or two later, it was endangered species; and still later, I was a devoted fan of Sonic the Hedgehog. When I am this fascinated by a subject, I immerse myself in knowledge about it, and I am able to remember a great deal of what I learn, even after my interest in the subject tapers off to a more moderate level. I consider the ability to retain a lot of information an advantageous aspect of AS.

Up through third grade, I had never been in a class of more than 21 students per teacher. When I started fourth grade, I suddenly found myself in a class of 34. The classroom was more crowded and, to me, quite hectic. With the desks situated close together, people bumping into them, and larger work groups, I found myself overwhelmed and very stressed. It became quite frequent for me to lose my temper or break down crying because I could not handle the chaotic environment.

After more testing, I was placed into special education programs in several different schools, but I was withdrawn from each one before long, because none of them could meet my needs. One of these schools in particular stands out in our minds as the worst one. It was intended primarily for students with severe behavioral problems, and the staff members’ authoritarian approach to us went very much against what I needed. It was, as my parents would later declare, “a correctional facility in spirit,” and I often found myself embroiled in heated conflicts and power struggles with the teachers. Repeated attempts were made to make them understand how to approach me, with guidelines such as acknowledging my raised hand or question, even if they could not answer me immediately, and bearing in mind that I became very anxious if I had insufficient physical space.

I think it was around this time when I really started wondering why I have Asperger Syndrome. I do not mean that I wondered what the cause of it was; I mean that I wondered why I am the one in X-number of people with the condition. I felt like some kind of freak, and I wanted so badly to fit in and be like the other kids.

Despite our best efforts, the school system could not be made to see me as anything more than a child with behavioral problems, and the situation got worse and worse. I often came home sobbing, I showed symptoms of depression, and I even had nightmares and night terrors. Finally, when I was in fifth grade, my parents decided that home schooling was preferable to a place which simply could not provide an appropriate academic and psychologically safe environment for me. They removed me from the school and even took legal action against the district.

When I was 13, we moved back to Massachusetts. I attended regular middle and high school, with the help of a personal aide. In Maryland, a personal aide with whom I could remain in regular classes instead of being in a special education program was what we had wanted all along; after returning to Massachusetts, we finally were given the option. My aide helped me stay organized and on top of everything, allowing me to focus more of my energy on the academic aspects. She also took notes for me in class and arranged for me to take tests in a separate room, with access to a laptop if a considerable amount of writing was required. Throughout middle and high school, now that I had someone to help with my executive functioning (something which is often very problematic for individuals with AS), I did much better in many respects. I took mostly honor courses, so I was being challenged academically, unlike in the previous school, whose curriculum was designed for students with below-average IQ. (At age 13, my full scale IQ was 138.)

When I was 17, just before I graduated from high school, tests revealed that my full scale IQ was 143. My verbal IQ was 145, while my performance IQ was 128 – a discrepancy of 17 points. It is very common for people with AS to have a higher verbal than performance IQ, though both are still above average. This is why we tend to excel in academic areas while struggling with social situations.

Although I still face personal issues with my condition, I have been able to grow and mature. By the time I started college, I was confident enough to attend classes without a personal aide, though I do sometimes need a volunteer to take notes for me and need access to a word processor for certain assignments. I have always been a commuter student, never living on campus; I knew it would place too much undue stress on me, and I almost certainly could not have done as well as I have if I had attempted it. Living in a noisy dorm, sharing a communal bathroom, eating in the cafeteria – it would have been too much for me to handle. I need to be able to retreat to the safe haven of my own home.

As much progress as I have made over the years, AS still manifests itself in my daily life. There are various ways in which my family tries to minimize my stress levels; if I so choose, we may also relay some of these guidelines to my teachers and peers. For example, it is important to understand that being interrupted during work or recreation can be very stressful for me. Just recently, I told my mother that when she interrupts me while I am watching a video or singing a song, I feel as if I have been jolted out of a “flow”; I become tense and, after she leaves, I have trouble enjoying the activity as much. Similarly, if I am interrupted while working, I become very tense because I lose my concentration.

A common characteristic of AS is the tendency to take things literally. In one memorable instance, when I was in elementary school, I was given a worksheet with addition and subtraction problems. The instructions at the top said, “Find the sum,” so I did – I solved all the addition problems but left the subtraction ones blank. I was not trying to be cheeky; I genuinely thought I did not have to answer the subtraction equations. More recently, a professor had me borrow a textbook for reference as part of an independent study. Referring to it was a requirement for the study, but because he had not specifically told me this, I thought it was just a suggestion in case I needed additional information. These are examples of why it is important to make doubly sure that I know exactly what is expected of me for an assignment; while other people may be easily able to infer exactly what is required, I need to hear the exact instructions in very concrete language.

I will always have Asperger Syndrome, but while it does influence me, it does not control me. When I look back on my years as a struggling SE student, I hardly recognize myself. Soon, I will face my next hurdle: entering the workforce. I do not know what will happen, but just as I needed an aide to help me in middle and high school, I may need to find an unofficial mentor of sorts who will help me handle the minutiae and allow me the chance to focus my energy on my job, rather than expending it on matters which most people take for granted.