I was diagnosed at age four and a half with pervasive developmental disorder not otherwise specified (PDD NOS), one of the four classified autism spectrum disorders. My first memory associated with my diagnosis is when my mother was yelling for me to hurry up and get my shoes on because we needed to rush my brother to the hospital after he got into the Sudafed. My mother thought I was taking my time on purpose as part of my ‘attitude problem.’ Later, after an official diagnosis, my mother would often look back on this scene in retrospect as how it was probably my learning disability that sometimes made me move so slowly.
It was in kindergarten that I became more and more aware of my differences. I remember I had trouble understanding the teacher’s directions, let alone follow them. This led me to have to repeat kindergarten, which was frustrating and shameful. During my second go at kindergarten, I think I became even more aware of my differences. I often took longer to complete tasks than other students. I would have trouble staying focused on discussion topics, even though this time I was a year older than everyone else in my class. I cried more often.
First grade at Arrowhead Elementary School everything took a turn for the worse. I felt completely alienated from my peers by this time. Arguably worse than their rejection was an outright patronization. My self-esteem suffered, and self-apathy took hold. Most school days I felt bitter, numb, or both. I remember one story time when I wet myself. Most kids would feel embarrassed but at that point, I felt so alienated by my classmates and teacher that I did not care.
There was another time in first grade when we were working on spelling in pairs and the girl I was partnered up with asked me to spell the word “are.” As a sort of social experiment, I purposely spelled the word as “ar.” She told me that I was wrong and gave me the correct spelling. “Oops!” I shrugged off my “mistake.” “That’s okay, Charlie,” said the girl. “You know I actually thought you were going to just say ‘r.’” I smiled at her innocent patronization.
Second grade was, if anything, worse. Even though I was older, I recall having more meltdowns as a result of my inability to regulate my sensory and emotional responses. I disliked this teacher even more and I increasingly resented my peers. As for how I saw myself as a “special-ed kid?” I knew my learn disability was the reason why I could not read or spell as well as my peers. So, while they could spell longer words like “president,” I was still working on words like “boat” and “light.” There was also a shelf of color-coded books. A green dot book meant it was book at the second grade reading level; a yellow dot meant the book was a grade or so below the second grade reading level. You’d be correct if you guessed that I was reading a yellow dot book. I would sometimes get made fun of for this, which would worsen my self-esteem and strengthen my bitterness towards my peers. There was a small group of us struggling together with a special education teacher to reach the level of reading, writing, and arithmetic as our classmates.
By this time, I had also been part of a social skills group led by the school’s friendly, yet patronizing, guidance counselor. I found the social skills group tedious and degrading at times, but it was comforting to know that I wasn’t alone; there were others in the group. I wasn’t the only one there.
After my mother and stepfather moved the family into his home in Mattapoisett, I changed schools for the better. I often consider Center School to be the place where my life and self-image turned around. At this time, I was finally able to spell multiple-syllable words like “hammer” and even read chapter books. I remember being very excited by these new prospects. Most special of all, Center School is the first place that I started acquiring a fine collection of friends (as I wished I had at Arrowhead Elementary and my old neighborhood). Recess was finally fun, and I had play dates with kids my own age.
At this time, teachers’ aides accompanied and accommodated me for different subjects, and I had speech pathologists, occupational therapists, and a physical therapist. I don’t remember if I had a “social skills group” per se, but the speech pathologists kind has served as the social rule enforcer, along with my teacher. They made many efforts to make sure that other special-ed peers could develop friendships.
Kids at the school were encouraged to act friendlier towards each other and especially towards students who were a little different. There was an inner stirring at that point in my life. I started thinking that there were aspects in my life that started to work, and I began to view my learning as perhaps maybe less advanced than everyone around me, but unique. It was something I could sometimes feel almost proud to talk about with my peers as sort of an icebreaker.
All throughout my years at Center and Old Hammondtown Schools, I still had meltdowns, but this time I was soothed by much more sympathetic and emotionally savvy teachers and paraprofessionals. I don’t recall my self-image changing drastically until fourth grade; I had this “think later talk later box” technique I used, writing down things there were on my mind but were inappropriate to bring up during class discussion. The idea was that if I had something I wanted to talk about, I would write it down, put it in the box, and I could talk about it in a later point in class. After a couple months, I realized I was the only one with a “think later talk later box,” and this time instead of making me feel “special,” I felt weird and insecure. My teacher asked me if I still wanted to use the box, I said, “No thank you.” She threw it in the trash.
Also around this time, I started getting uncomfortable with the way my peers displayed an over-eagerness to try to help me. The thing is that, in my mind, getting help from an adult was normal, but when people my own age were constantly offering unsolicited advice to me, it felt overbearing and made me feel insecure. I remember having a small meltdown over it once.
Fifth grade was one of my peak years. I had the most friends and the busiest social life I had ever had. Life seemed for the most part pretty good. But things got confusing for me during the holiday break while I was staying at my biological father’s house.
My father introduced me to one of my step cousins who is Autistic. I believe this young man was nonverbal, but I don’t clearly recall. My father and stepmother explained how he would likely always be like this and how his behavior would never really improve. I remember making the idealistic assumption that, with enough loving support, he could change. (For the record, I don’t think 11-year-old me was suggesting that this young man would ever stop being “Autistic,” only that he could be taught and learn to interact with others in more productive manner.) Nonetheless, my father and others rejected my optimism and I shrugged it off. I still wonder about this. Perhaps only the young man knows for sure.
I found it odd that my father started comparing me to my step cousin, being as how he was viewed as Autistic and how unbeknownst to me, I was considered as being perhaps “a little Autistic,” which made no sense to me. What part of me was Autistic? Just how Autistic was I? How come I wasn’t aware of this before? Until this point, my deepest understanding of myself was that I was a kid with a learning disability struggling with reading, writing, math, and social skills.
I returned home from the holiday break at my father’s and told my mom what my father had said. She angrily rejected his opinion on the matter. “You have a learning disability, but you are not Autistic! Your father does not know what he’s talking about!”
Now, as this was her ex-husband, strong exclamations of disagreement with him were quite common coming from her. Of course, this exchange did nothing to help clear up my confusion. After holiday break, I remember crying at my locker because my dad said I was Autistic (or claimed that I was Autistic), which I perceived was something quite bad.
This was the beginning of my journey of self-understanding, self-awareness, and after some time, ultimate self-acceptance as an Autistic individual.
The Autistic Experience
By Charles McIntyre