Autism, or the Unnamed Shadow

As a child Autism for me was an unnamed shadow, attached to me but somehow out of place. I knew from 3d grade that something was different about me, like a shadow that refused to give his name. This unnamed shadow is still with me into adulthood, but thankfully it has a name now.

Elementary Years

In elementary school I was a mixed bag of good and bad for the school. On good days I was the teachers pet, working hard to get good grades. I loved science and history class, but struggled in math and English. All my teachers complained about my handwriting.

My peers were not friendly to me at all. I could tell that my classmates had friends and cliques, but I struggled to figure out how to fit in with any of them. While my peers had small groups of friends, I spent my time at lunch alone. I ran up and down the playground so much that I was called “Forest Gump” after the movie came out.

I wanted to be an astronaut in elementary school, and I always had some book about space with me. My interest in science actually presented an opportunity for me. In elementary and middle school I was in the Gifted and Talented program. I was also in the Special Education class for my handwriting. I was twice exceptional (2e) without the formal diagnosis. This was confusing to my teachers, because I did well in science but poor in math. I could pass test with few notes, but had problems understanding my classmates.

Fights

The principal knew me well. About once a month I’d end up sitting in front of the principals office after a playground fight.

For me I seemed to have a internal tank of emotional abuse I could take from my peers. Once that tank was full I’d lash out at the classmate who overfilled that tank. When this outburst happened I was an emotional explosion, with my fist flailing, crying, and yelling. Whoever was in the way had to run or grab me and drag me away. The paras deserve better pay for dealing with my outburst and meltdowns. When these fights happened, my unnamed shadow sprung out like a dark explosion of all the abuse I had received.

Even the principal recognized the pattern, but not the neurological basis for it. He recognized that my fights happened near the end of the month, but did not do anything to stop or address the chronic bullying that lead to my meltdowns.

The school was confused because I did not have an autism diagnosis. The best accommodation they provided was to have me type my classwork. While the school did some testing (I remember the WJ-III test) they did not go in depth to look for Autism. This sandbaging continued on through middle school.

Middle School

Middle school was the worst part of my childhood education. I went to the same MS as my peers from elementary school, so the same bullies followed me over.

Again the teachers were confused. I was struggling in math, but was bored and under challenged in science class. My writing was still terrible, but by this time the school had a full lab of Apple computers. In 6th grade my English teacher Mr.Sleep made a breakthrough with my writing. He found an AlphaSmart portable typing device, which means that I could type my classwork and then print it out latter for them. My teachers quickly gave up on my handwriting, and demanded that I just type everything (including math) to make their lives easier.

Autims alphasmart
AlphaSmart portable keyboard. Photo from AlphaSmart

This was a mixed blessing for me. I was the first student to use the early AlphaSmart, and my classmates thought it was not fair I could type my work at my desk while they had to write it. They had no issue giving me grief about it. I felt awkward going to the computers to print out my work while my classmates finished at their desk. The teachers were happy because they could see I knew my work and give me a fair grade.

It turns out I was actually helping the school field test the AlphaSmarts, because over the next few years the AlphaSmarts were integrated into all the classes as a precursor to 1 on 1 integration. Other teachers used them to take test and give presentations. While it is a small comfort now to know I successfully field tested the AlphaSmart for the school, it does not help that I stood out at that time.

Missed Diagnosis

I was again 2e in middle school. I was in the Gifted and Talented program where we had some contest, but did little else to support GT students. I was also seeing the councilor about once every couple months to discuss my ongoing fighting.

I did undergo testing for my IEP, but they again missed the diagnosis for Autism spectrum. They kept me on my IEP under handwriting issues (They did not call it disgraphia) and what today would be Pervasive Development Disorder, Not Otherwise Diagnosed (PPD-NOS). The school effectively kicked the can down the road. My unnamed shadow was just as dark besides me, and just as anonymous.

Just as in elementary school, the pattern of monthly fights continued. I continued to struggle in middle school with trying to make friends. While I did make some from orchestra, my circle of friends was small. It was easier for me to step on the toes of other social cliques and accumulate a large group of peers that would bully me on a daily basis. My tank for emotional abuse did grow, but kids at this age are cruel.

I sat alone at the loner table in the corner of the lunchroom, and dreaded going out to play. There were a few time I begged the principal to stay inside and work in the library. On that point the principal told me to suck it up and just stay out of everyone’s way.

The principal of the middle school also saw the pattern of monthly fights, and again failed to do anything about it. The teachers knew of the group of bullies, but were to overworked to do anything as well.

Unnamed Shadow

I knew I had this unnamed shadow besides me, causing social issues.It was this unnamed shadow was the one who exploded when I got one insult to many.

But how do you tell the adults in your life that something is different when you can’t describe this shadow? I could say that my classmates were mean. I could say that I did not understand why they hated me, but I could not say why. Mimicking how they acted, I tried to like the things they liked. I seemed to follow their concrete rules but was still rejected.

The unnamed shadow was just there in middle school. At times he let me excel in science and work with the teachers. Other times I seemed to trip over my shadow in the hallway, to be embarrassed in front of my peers.

A Clean Start

I left that hell hole middle school for a private parochial high school. Sometimes in life a clean break is what is needed. Of the handful of classmates that followed me to high school, none of them stayed past freshman year.

The classmates in high school were vastly different from what I grew up with. They came from private schools that had actual discipline standards, and they know how to be friendly to all. They treated me normally, with no insults, complaints, or social backstabbing. I sat with my peers at lunch, but I was quiet and did not talk much, but I still ate as equals with them. I see now that I had symptoms of PTSD that kept me from interacting more with my peers during lunch.

As a private school, they did not have a special education coordinator my freshman or sophomore year. I had an IEP that carried over from middle school, but my shadow was still unnamed. The school encouraged typing assignments, so my need for in class accommodations was decreased. I still was given extra time to got to the library to type up my test answers, but none of my peers complained.

I thrived at the high school, but I still knew my unnamed shadow was with me in class.

Better Late then Never

The school did not get a special ed coordinator until my junior year. She was in charge of the handful of students with previous accommodations, but she was not qualified to do any testing in house. I worked with her for typing accommodations, but she was not in a position with the school to really provide more then recommendations.

So I make it through my Jr. and Sr. year, almost to graduation. Now graduation is a chaotic time in anyone’s life, and I had my own fun as well. I was working on my Eagle Scout project at the same time, and applying to community college. Somewhere in that time, I got the recommendation for an extensive testing for learning disability.

Unnamed No More

The last week of high school I sit in an office surrounded by professional books. The tables are covered with plywood kid puzzles and sensory toys. I know that I’m being tested, but I have doubts that it will put a name to anything. I remember a writing sample and the WJ-III test, but other test as well.

After a fury of testing I sit again in the waiting area with my dad. The doctor calls us in to the room with books and toys.

“Stan, I have good news for you. After reading all the test, you have Non Verbal Learning Disorder (NLD). For you handwriting you have disgraphia and for math you have discalulia.”

I could look at my shadow and see the name (Autism spectrum disorder) for it now. The diagnosis made total sense to what I experienced growing up.

  • Social issues, and difficulty in understanding non-verbal body language.
  • Difficulty in understanding non-written social language.
  • Difficulty in peer interaction.
  • Issues in emotional regulation (frequent fighting).
  • Strengths in science and history.
  • Difficulty’s in handwriting and fine motor coronation (disgraphia).
  • Difficulty in math (discalculia)

Autism, the Named Shadow

NLD was controversially changed in the DSM-V, changing my diagnosis from NLD to Autism spectrum disorder (ASD). Despite this name change, I’m still happy to have any name for my shadow. I’d rather have a different name at this point then no name at all.

Having a name for this shadow is an important part of my life. When I got that diagnosis the last week of high school, I was overjoyed to know why I was different from my peers growing up. The diagnosis gave me so much that I needed in my life.

Two banners
Two banners. On the left is “You’re not Alone”on the right “Different Not Less” banner and photo by author.

Knowing that people on the spectrum have issues with social interaction gave me an absolution for those dark years of middle school. Before I felt that I was responsible for the way I was treated, that I had somehow asked for the bullying.

I know now that I did not get along with my peers because I could not see the whole picture of what it took to interact with them. While I could fake some superficial social rules like “follow football” or “wear this brand of jeans”, but with Autism I could not understand what a twitch of their lips in disgust meant. I was probably bullied more in middle school, but missed the subtle non-verbal ways that my peers sneered or mumbled about me.

The Autism diagnosis was empowering. I had a diagnosis that came with resources and checklist that I could follow and present to my colleges.

The diagnosis also told me “I was not alone”. It makes my heart full to say that every time.

With my unnamed shadow, I thought I would be alone with it growing up. It makes my heart full to say “I’m not alone” with my diagnosis.

With the diagnosis I was able to get more accommodations in college. I also found a great local support group of families on the spectrum. It is great to go to meetings and help parents with my experience on the Autism spectrum.

Autism was an unnamed shadow to me in childhood. If you suspect that a young family member has Autism, I encourage you to advocate for that child as actively as possible. If the public schools will not work with you, I encourage you to find local resources to get testing and accommodations.

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