Back in 1979, there was no DSM IV. There was no Asperger’s diagnosis. There were no support groups for parents. No early intervention. After all, how can anyone intervene into something that does not yet “exist”?
My mother used to tell the story of playing “Music Box Dancer”, a loud & lively tune, on the organ. She was 6 months along with me. As
she played, she began to feel and see violent kicking in her womb. She called my dad into the room. When she asked him what he thought, he abruptly answered, “Stop playing!”
My mom, very concerned, read an article in a magazine that mentioned the “difficult child”. This was a child who was hyper-intense to their environment from day one. It was hypothesized that the problem would solve it self by the time the child was about 5 years old. This obviously was not the case, and my mom thought so after reading the article. The rest of my story more than proves the point.
I was born to older parents. My dad was 52 and my mom was 40 when I came into the world on Saturday, August 11, 1979. My mother had been diagnosed a year or so before with a thyroid disorder called Hashimoto’s. She also had an autoimmune disorder. There is a prevailing theory that both thyroid and autoimmune disorders in the mother may lead to having a child with autism. My dad also underwent a fertility test before I was conceived. He was told that having children was “improbable” but not impossible.
Three months later, I entered the world screaming mad. My mother was able to hold me briefly before I was taken from her to be cleaned up and weighed. I was only silent when she wrapped me up tightly in the blanket. As soon as the nurse carried me away, the blanket falling away, I resumed screaming again.
At 3 weeks old, I was obsessed with shadows. The chandelier in the living room was on a rheostat switch on low. My parents kept trying to get me to look at them, but I would only look at the shadows.
Turing the rheostat up solved the shadow obsession.
I said my first word, “pretty” when I was 6 months old. I sat up with assistance. I did not smile much. I was shy around men. I am told it was because their voices were generally louder than a woman’s.
I seemed like a typical infant and toddler…until the doorbell rang or a door slammed shut. I would scream for up to half an hour in the wake of a sudden, loud sound.
My symptoms weren't limited to noise. I screamed and buried my head at the flash of the camera (ironic today being an avid hobby photographer). I walked off the stairs, not down them. I could not “see” the dimensional aspect of stairs. I could sit up but not support my own weight unassisted. I did not walk until I was 18 months old.
My mother was admonished by her own family. I was being “spoiled” was the usual consensus.
Kindergarten and Grammar School
I began kindergarten when I was 4 in 1983. The other kids played with me until a lesson where a scratchy record was played. I screamed very hard and ran out into the hallway, refusing to remove my hands from my ears. My mom was called and asked to remove me. Instead, she used logic. She told them to place a desk in the hall across from the door. Each time they played the recording, they would forewarn me to go and sit at the desk. I would stay put, waiting until the lesson was over. They weren't easily persuaded, but did agree to keep me. The arrangement worked, but the kids cleared out each time I went where they gathered.
When my parents took me for my kindergarten assessment, the teacher sarcastically asked my mom if she would be attending class with me, given all the social interaction my mom had to do on my behalf.
In 1st grade, our class had to “draw the music”. Another scratchy record was played. It was Classical music. (To this day which I cannot stand classical music due to the sharp rise and fall of the arrangement, where as rock music is even and steady. I managed better this time. Holding my ears with both my one hand and the shoulder of the other arm where my writing hand was, I drew sharp peaks and valleys in red and purple. There were holes in the paper from holding the crayon too hard. This teacher was kinder. She called my mother and the consensus was that I didn't enjoy classical music, but that I was a very sensitive child.
I was hyperactive in school. I could barely stay in my seat. There weren't rocking chairs attached to the desks. To this day I cannot be without the rocking motion. I found I could both calm and focus myself by doodling. I doodled so much I covered my notes and work with shapes of dogs and swirls. This same teacher told my parents to purchase a separate notebook for me to doodle in. She didn't panic or clamor to have me removed as my 2nd grade teacher would go on to do. One in thousands of problems solved.
I saw my first psychiatrist in 2nd grade. I was called via the PA system to the principal’s office where I met my parents. They took me to the school psychiatrist. Parents absent, the psychiatrist made me do a
finger exercise, touching each finger to my thumb as fast as I could. “Outrageous,” she remarked. I am not sure to this day if she was pleased or not. She asked me how my bowel movements were. Even at age 7 I thought that sounded freaky.
She concluded that I was fine, and that the matter never should have been called to her attention. I still could not sit still. There was an exhibit of rice and sprouts growing in water. I think it was themed around people from other countries, what they ate. I would sneak back and eat the rice and splash in the water when everyone was supposed to be working, quietly. I caught a typo in one of the textbooks one day, and instead of her praising me for being diligent, she screamed at me to sit down. She had horrible halitosis to boot.
There was a redistricting when I was 9, so I had to change schools. It was for the better, although that is when the bullying first began. The teachers I had for both 4th & 5th grade were kind, but the kids were realizing that it was fun to cause harm to those who were unlike they were as a whole.
Middle & High school years
I will not go into great detail about being bullied, as it brings up PTSD- like symptoms (racing pulse, shallow breath). All I will say of Middle School is that it was a war-zone. I was assaulted on multiple fronts of my being, 180 days out of the year. Psychologically and physically I was perused relentlessly for 3 long years. My dad went to the principal’s office so often; they pulled the shade down when they saw his truck coming up the drive.
Summer vacation was the only time I was continuously happy. I could retreat into the safe haven of home. Swimming was nourishment for my soul as well as my body, but I was bullied at the pool as well.
I had a few friends that were more opportunists than anything else. I only had one in my grade, and not in any of my classes. I was alone. I only spoke if the teacher called on me. I could sit silent all day.
By high-school, I was glad to be out of middle-school, but then my dad suddenly died of complications following surgery to repair a ruptured aneurysm at the end of my freshman year. My grades were always good, though math was an area of struggle. My grades were good enough that the school allowed me to miss the last week of school and be excused from finals.
In the years following my dad’s death, my autistic behaviors really began to deteriorate. I didn’t have any prior experience with death. I processed his passing as being surreal; like a movie. A year later we went on a vacation to the Wisconsin Dells. It was so loud and so crowded there, that was where my adolescent melt downs first started. Meltdowns included screaming and self-injury as well as branching out to the offending source. Children, dogs and fireworks still present a challenge for me, but not to the degree of agony in my teen-age years. I believe that going through the physical changes of being a teen-ager with hormones contributed.
I had to leave school in beginning of senior year, following a knife threat by a group of freshman girls in the cafeteria.
I walked out and called my mother to come and pick me up. I vowed I’d take the GED before I’d be a drop out.
As it turned out, my mother talked to the high-school. They quickly arranged for me to have a tutor free of charge for the rest of the year. I graduated in 1997 with my class. I went to the ceremony for my family and for my own self. Several kids asked me why I came and told me I should have stayed home.
I had no friends now. I had seen them for the opportunists they were. I am blessed to say I came from a healthy home environment. My so called friends came from abusive homes. One girl’s dad even threatened to fight me while drunk. We had a clean and inviting home. Their homes were cluttered and even dirty. I feel badly for them now, but then all I felt was my own grief and anger.