Twirling Naked in the Streets and No One Noticed; Growing Up With Undiagnosed Autism

by Jeannie Davide-Rivera

  School work was easy, but navigating the school day without stepping on a landmine was not.

  I tried to be a “good girl.” A good girl listens to her teacher, and these instructions were clear.

  “You’re too skinny, drink this.”

  I stood there looking at the glass she held out in front of me with the clear jellied slime and yellow floating ball.

  I tried to drink it; I did, but the minute the slime touched my lips everything inside my stomach found its way outside. It’s a good thing I never ate breakfast or it would have been worse. I refused to drink it; I cried, I screamed, and I was brought to the office.

  This time Grandma got the call, and she was furious. My teacher expected Mom to show up and instruct me to listen, to behave, and to drink her slime. She didn’t expect Grandma.

  If you thought a screaming, crying second-grader could cause a commotion, you should have seen Grandma. My crying was nothing compared to what happened when she got there.

  “How dare you!” Her voice was loud and filled the whole office. She walked past me sitting on the chair against the wall, past the startled school secretary, and went right for the woman with the witch’s shoes and evil potion.

  I’d seen Grandma mad before. Whenever my father would snatch the meatballs from her pan, everyone heard the whomp. Dad would come out of the kitchen rubbing the red welt Grandma’s wooden spoon left across his knuckles.

  But now she was even angrier than that. I wondered if Ms. Montouri was going to get whomped with that wooden spoon too.

  “Raw eggs, are you crazy?” Grandma’s voice grew even louder.

  “She’s too skinny. She needs more protein.”

  That’s when the yelling really began. Grandma didn’t like back talk.

  I tried to listen but the room felt like it started spinning. All the words jumbled together so I couldn’t understand them. I covered my ears, closed my eyes, pulled my knees to my chest, and rocked back and forth on the chair until it stopped.

  “Come on.” Grandma took my hand from my ears, “let’s go home.”

  I didn’t look at anyone when we left; I only followed Grandma out of the building. I don’t know what she said to Ms. Montouri that day, but she never tried to make me drink raw eggs again.

  “You didn’t like school, so you made your own.” ~ Mom

  Some autistic children line up cars, arrange their toys, books, and coin collections. I did all these things too. I methodically ordered my baseball card collection, and carefully arranged the stamp collection I started in the fourth grade. For me arranging things, making order out of chaos, was the most important part of playing; it was the part that brought me the most joy.

  Playing school was one of my favorite things to do, which is odd considering the real thing was a nightmare. Maybe I longed for the idea of learning, for knowledge, for once again being smart. I loved facts, memorizing them quickly for instant recall when the teacher needed correcting.

  “Don’t correct your teacher in front of the class,” mother said.

  “Why?”

  If she didn’t need so much correcting I would have done it less. I didn’t understand why it was necessary for math problems to be long and drawn out. If she didn’t know the answer, why didn’t she just ask me? I knew it.

  School was an endless struggle of confusing instructions. They wanted me to know the answer, but didn’t want me to tell them what it was. They wanted me to raise my hand to be called on before answering, but then they didn’t call on me. Instead they asked someone else who clearly didn’t know the answer, and was not raising their hand.

  All of it made no sense; my school was better. There were rules, they were clear, and had to be followed. In my school I was the teacher—always.

  I spent hours setting the tables and chairs just right, arranging them so my students could see the chalk board. I collected textbooks, papers, pencils, crayons, chalk, and erasers. I gathered black and white notebooks for the class to practice writing their multiplication tables. Pretend things would not do; I needed real supplies.

  In my classroom pencils were sharp, and children were quiet. I assigned classwork, and administered tests. I even assigned homework, and expected that my students had it done the next day.

  By the time my classroom was finished and ready to play in, my friends had run off. I remember arranging a perfect classroom in Cindy’s house, in the porch room right by the door to the terrace. I was content arranging the items we needed, and had no idea how long it had been since Cindy left to play dress-up in her room.

  I liked playing school, but apparently it wasn’t fun for anyone else. No one would play with me; they didn’t want to do my homework assignments. I couldn’t imagine why.

  I suppose I should have been upset by this, I should have been lonely, but in reality I was pretty content playing alone—setting up my classroom, my things.

  I was creating an orderly, quieter, better version of school. Since real school had rules that I could not understand, I made my own.

  Chapter Five

  The Insta-Vomit Kid

  It wasn’t only the slime of raw eggs that produced insta-vomit. It was anything slimy that went into my mouth. If I didn’t like the texture, taste, or more importantly, the smell of it—vomit was instantaneous.

  To me that was my proof that I did not decide on my own what I could, or would eat. My sensitive palate decided for me.

  A few days ago, my family and I ordered Chinese food. As I sat there with my husband and three boys, I reached for a spring roll. I like egg rolls, but the restaurant only had shrimp, and I can’t eat shrimp.

  The one bite I took of my spring roll sent me scrambling for a napkin and trying to make it to the bathroom. The inside was warm, and slimy. It felt like wet, mush in my mouth.

  I can’t eat food that is wet, or placed on a wet plate. If you are going to ask me to eat on a freshly rinsed plate, dry it first!

  The instant need to expel the mush from my mouth was overwhelming. At 38 years old, I almost spit the food out of my mouth onto the table. Unfortunately, as a child, I did spit it right out. It was that or spew everything I’d eaten wherever I stood. I was a joy to eat with.

  You’d think my mother would have stopped trying to force me to eat. Thank God for the dog. I slipped my food under the table when my mother’s back was turned.

  There were very few things I would eat. I spent an entire year only eating peanut butter sandwiches. No jelly, no crust, and the bread had to be fresh. If it was even a few days old (fresh by others’ standards) I would not eat it. It lost its fresh bread smell.

  I pulled each slice of bread out of the bag and pressed it against my nose taking deep breaths, inhaling the smell of freshness. It didn’t take me long to figure out that I only liked the smell of Wonder Bread. If it wasn’t Wonder, I would not eat it. There was no fooling me either, I could tell the difference.

  Thinking back now I see how Grandma’s eating habits were very similar in nature to my own. She too would eat the same thing, at the same time, day in and day out. Every so often the routine started over with a new favorite food. I wish I could say this is something that lessened with age but it did not.

  Today I am very much the same as I was then. I eat many more items because I cook them myself and control what goes in the pot, but I routinely eat the same things over and over again.

  Grandma and I spent many years having lunch together. For months we ate lettuce and tomato with cottage cheese and salt at the same time every day, just before Grandma’s stories came on television. Grandma had to watch All My Children.

  “I have to be home for my stories,” she said. Whatever we were doing ended, and we zipped home, making sure there was enough time to make lunch and sit down before it started.

  When we arrived home Grandma peeled the tomatoes (no skin on fruits or vegetables—ever). She chopped the lettuce into small bite-size pieces, and pulled the Breakstone’s Cottage Cheese out of the refrigera
tor. We could only eat Breakstone’s, no other brand, and only whole milk.

  When she tired of salad for lunch, we moved on to “one-eyed eggs.”

  One-eyed eggs were what Grandma called them. She took a slice of Wonder bread, pinched out a small hole in the middle, big enough for an egg yolk, and then pan fried the bread in butter to toast it lightly. She separated an egg, discarding the slimy whites, and gently placed the yolk in the center of the bread. It cooked for a few minutes, and then was flipped over with a spatula.

  When it was finished I could cut pieces of the bread and dunk them in the center just like a sunny-side-up egg but without ever having to touch the whites, or pick the toast up with my hands.

  I’m not sure if this was an actual recipe or Grandma just finding a way for me to eat the toast and eggs. I never minded the yolk, I liked to dip my toast but if my toast even accidentally touched any slime, and it touched my mouth—you guessed it—insta-vomit.

  Food textures were not the only things that sparked the appearance of the insta-vomit kid. Smells were even worse—enter the Super-Sniffer.

  I smell things no one else can; even a faint remnant of odor in the air is registered by my super-sniffer.

  I suppose it may have been easier to steer clear of smells that turned my stomach if I didn’t need to smell everything before I ate it, and I mean everything.

  Did you know that our sense of taste is based 80% in our sense of smell?

  I’m not surprised. For me I think it is even higher than that. I can quite literally taste what I smell. I will know exactly how something will taste just by sniffing it.

  Many times I can pick out the individual ingredients used in the food—even if only in small amounts, the things that no one else seems to notice. In my house this is my super-power because I can re-create recipes from our favorite restaurants.

  It is not surprising to me that smells produced the reaction they did. Have you ever tasted motor oil, body odor, or dirty socks? How about a dirty subway station, restroom, or bus exhaust? Rotten fish market? You get the idea. Any of these smells bring on the insta-vomit.

  Some smells are so bad that they make me feel like I can’t breathe. Aerosol sprays get stuck in my throat. Ammonia, bleach, pine-sol, and most air fresheners are intolerable—and perfumes are the worst!

  There is a very real reason I only use lotions and other products that smell like foods I like. Berry deodorant, fruit scented candles—who wants to taste lavender or lilies all day?

  Growing up, I smelled all my food before I ate it, repeatedly, like sniffing the bread over and over again. This was partially to ensure I would be able to tolerate the food, but was also a stimming behavior.

  Stimming is short for self-stimulatory behavior, sometimes called stereotypic behavior. Stimming refers to behaviors like hand flapping, rocking back and forth, and spinning. It is a way for autistic people to adapt to the sensory stimuli around them.

  Stimming can occur when the autistic child or adult is happy, sad, overstimulated, or anxious. Foot flapping, pencil tapping, hair twirling, spinning round and round, smelling objects or people in some cases, and rubbing skin are all examples of stimming behaviors. They are meant to be calming actions which help regulate the overwhelming sensory input that the autistic person is experiencing.

  For me, smelling something good has a calming effect, it feels good. I can spend hours sniffing candles, or opening and closing the bottle of cucumber melon lotion.

  Smelling foods was the same way. Breathing in the bread made me calmer. The more anxious I was, the more things I sniffed. Crowds of people made me anxious, and eating with strangers made me want to run and hide. If I couldn’t get away, which was often the case, I needed to find something to smell.

  Smelling food was a given, but if you added stress to the mix, it became worse.

  My father finally grew tired of my embarrassing behavior. Every time he took me somewhere I refused to eat unless I smelled the food first, which didn’t guarantee I would eat it, and I sure was not going to try it. More often than not I wrinkled my nose, turned away, and pronounced, “I’m not eating that!”

  I wasn’t trying to be difficult, or rude. I didn’t even comprehend those ideas. I had no idea that my behavior could hurt someone’s feelings, why would it? My intention was never to make anyone feel bad. It had nothing to do with them; it was just that stinky food.

  Every Christmas Eve my parents packed us in the car to Aunt Jenny and Uncle Eddie’s house for dinner. Uncle Eddie was my grandfather’s youngest brother. It was a short car ride; he only lived seven blocks from our house.

  “You are going to eat whatever Aunt Jenny gives you,” my father announced on our way there. “Do you understand me?”

  I said nothing, but the ball that was bouncing around inside of my belly got bigger. There were often many stinky things on the table like artichoke hearts. What if she gives me artichoke hearts? If I don’t eat them Dad will be mad.

  Aunt Jenny’s table was set with a red table cloth, fine white china trimmed in gold with matching golden utensils. Napkins the color of Christmas spruce were rolled inside golden leaved holders. Ivory candles rose from holly leaves in the center of the table.

  The kids’ table was set up in the center of the living room in front of the Christmas tree. The plastic table cloth had pictures of Santa, reindeers, and elves. There was an assortment of candies in small bowls in the center. The plates were paper, and the utensils plastic.

  I never liked sitting at the kids’ table. Not because I didn’t like the table, but because I would have to sit with the other kids. Kids I did not recognize, even though they always seemed to know me. “Cousins,” is what my grandmother called them, but to me they were strangers. I preferred to sit at the grown-up table.

  The strange cousins ran around screeching and laughing as they went by while I sat near the tree worrying about when it would be time for dinner. This time I wanted to sit at the kids’ table.

  My father had me sit right next to him, something he never insisted upon. A heaping load of steaming lasagna was slid onto my plate. Sauce oozed down the sides of the pasta, cheesy strings of mozzarella hung off the sides of the plate. I was able to breathe at last. I could eat that; I liked lasagna.

  After waiting for my lasagna to cool down I scooped some up with my fork, brought it to my nose and took a deep breath—breathing in the smells of fresh basil, tomatoes, cheese—

  It felt like an explosion. My breath caught in my throat, tears filled my eyes. My hand stung. The fork flew through the air, and landed with a resounding clank splattering tomato sauce on the table.

  “Joseph! What the hell is wrong with you?” Grandma yelled.

  “She is going to eat whatever is put in front of her,” he said.

  My chest quivered with each sob that started coming out of my mouth. The table burst into shouts and commotion.

  “Joe, calm down,” Aunt Jenny said, “it’s all right, she doesn’t have to eat it.”

  But it wasn’t all right, it was never all right again. From that night on, every time I smelled my food before eating, which was every time I ate, in front of my father he smacked the food out of my hands yelling, “Just eat it!”

  The more he tried to smack the habit of smelling my food out of me, the more I needed to smell it. Eventually, I became immune to the smacks.

  Chapter Six

  Grasping for Control

  The more life spun out of my control, the more I tried to control it. Or at least, control some parts of it—like handwriting. I physically had control over my own handwriting, so I exerted it.

  Homework took hours. Hours of being yelled at to hurry up and get finished. Hours of erasing letters and starting over. Hours of sitting on the kitchen chair cross-legged rocking back and forth to drown out the crazy world around me.

  I became obsessive about my writing. It had to be perfect. Every letter and every line had to be perfect. If I didn’t like the look of the letter on th
e page, if it slanted slightly in the wrong direction I erased it, and started again.

  Of course, the letters were never perfect enough. Sometimes they went under the line, and I had to do it again. Sometimes they were of different heights and not evenly spaced across the page. That would cause me to do the entire page over, not just erase and re-write one letter or word.

  The contents of the sentences were of little importance. They didn’t have to make much sense at all. In fact, I often did not care what the words said, just that each letter be perfectly constructed.

  I began stuttering and mispronouncing words when I was excited, upset, nervous, or stressed. I couldn’t seem to get the correct words out of my mouth. Formulating blended letters became more difficult, not easier, with time.

  The school said I was putting too much pressure on myself. The rocking back and forth while doing my homework was just what I did to concentrate. They were concerned about my speech, and so speech therapy began.

  I liked going to speech, it got me out of my classroom every day. I had no problem working one-on-one with the teacher. After several years of speech, they proudly announced that my speech was improved—fixed, but that was only because there was no stress involved with sitting with one teacher and practicing the sounds of letters. That was a relaxing environment; it did not improve my speech outside that small classroom. Outside the classroom, I still stuttered and struggled to make my mouth formulate the correct sounds, and make my brain say the right words.

  The efforts to fix me or smack the behaviors out of me met colossal failure. The constant stress triggered nervous tics. At least that is the name that was given for my blinking, squinting, nose wrinkling, mouth stretching, hand flapping, and foot tapping.

  “She’s just stressed out by the homework,” the doctor said. “It’s nothing to worry about. Just have her do only as much homework as she wants to. Then the tics will get better.”