Twirling Naked in the Streets—and No One Noticed:
Growing Up With Undiagnosed Autism
Written by Jeannie Davide-Rivera
Narrated by Alicia A. Diaz
Copyright
Copyright © 2013 by Jeannie Davide-Rivera
All right reserved, including the right to reproduce this book, or portions thereof, in any form. First Edition: March 2013.
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Dedication
To my husband Mark, and my four boys Adam, Matthew, Thomas, and Jason
Acknowledgements
I want to thank first and foremost my husband Mark without whom I would not have been able to complete this book. Thank you for your dedication and commitment to our lives, our family, and your constant encouragement.
A special thanks to Dr. Sasha Federer, who was the first psychologist to truly see me, who listened to me, and offered constant encouragement and guidance throughout my writing process.
Table of Contents
Introduction
Chapter One: They Missed it; They Missed Me
Chapter Two: The Little Encyclopedia; Consuming Information and Hyperlexia
Chapter Three: The Princess, Her Socks, and Her Late Pass
Chapter Four: Banished to the Hallways; School Made No Sense
Chapter Five: The Insta-Vomit Kid
Chapter Six: Grasping For Control
Chapter Seven: My One Friend; My Only Friend
Chapter Eight: Acting the Part
Chapter Nine: A Confusing Middle Ground
Chapter Ten: Immune to Peer Pressure; Learning to Socialize
Chapter Eleven: The High School Hopping Aspie
Chapter Twelve: Autism Widens the Divide; Life Outside My Bubble
Chapter Thirteen: The Dangers of the Teenaged Autistic Girl and Her First Loves; Mind-Blindness
Chapter Fourteen: The Autistic College Student: Conjured Confidence, Failed Relationships, and Executive Dysfunction
Chapter Fifteen: Asperger’s and the Transition to Working Chaos
Chapter Sixteen: Damn That Shiny Armor
Chapter Seventeen: Adult Autism Hurts
Chapter Eighteen: Year One of Marriage Sucked
Chapter Nineteen: A Disconnected Mom
Chapter Twenty Diagnosis: Crazy:
Chapter Twenty-One: Autism Helped Diagnose My Autism
Chapter Twenty-Two: Grieving My Diagnosis
Chapter Twenty-Three: Interacting with the World
Author’s Notes
About the Author
Introduction
In 1974, 1 in 5,000 children were diagnosed with autism. When I began writing this book in 2012, that number was estimated at 1 in 88. In early 2013, the Centers for Disease Control and Prevention released yet another statistic; 1 in 55 children are now diagnosed and identified as being on the autism spectrum. What has changed? Are there more autistic children being born now than ever before? Is there an epidemic?
I believe the reason for the rising autism rates is two-fold. First, physicians are trained more thoroughly and recognize the symptoms that were once lost on many of us as children, and secondly, the diagnostic criteria have changed drastically over the years. The new diagnostic criteria allows doctors to recognize more children, and adults, on the spectrum. The more that is learned about autism, the more these parameters have and will continue to be changed.
The idea that only 1 in 5,000 children had autism in 1974 I believe is a gross underestimation. The fact is that autistic children were indeed in your midst then; however, doctors, teachers, and parents alike did not recognize the autism. When I was growing up autism was narrowly defined. In order to be diagnosed with autism you had to be unable to speak, and have a lower than average I.Q. Today, we know this to be false.
In fact, those on the higher functioning side of the spectrum, those with Asperger’s Syndrome not only can speak but often could speak very early, and profoundly. To complicate matters further these same children were labeled gifted, spoiled, too smart for their own good, and the list goes on. Children with Asperger’s Syndrome not only have average I.Q.’s but many have I.Q’s that are well above average. What happened to all these children who were intelligent, verbal, but still struggled because they indeed were autistic? They became adults.
In 1994, Asperger’s Syndrome, or (AS) was added to the Diagnostic and Statistical Manual of Mental Disorders, and recognized as part of the autism spectrum. Although, autism is a neurological disorder, it continues to be classified in the DSM. According to the DSM-IV, in order to be diagnosed with AS a child or adult must display “qualitative impairment in social interaction, as manifested by at least two of the following:
1. Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.
2. Failure to develop peer relationships appropriate to developmental level
3. A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, or
4. A lack of social or emotional reciprocity
In addition the individual must display one of the following restrictive repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
1. An encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal in either intensity or focus.
2. An apparently inflexible adherence to specific, nonfunctional routines or rituals.
3. Stereotyped and repetitive motor mannerisms, such as hand or finger tapping, twisting, or whole-body movements, or
4. A persistent preoccupation with parts of objects.”
A diagnosis of Asperger’s Syndrome also requires that these disturbances impair social, occupational or other areas of functioning. There can be no language delay, and no delay in cognitive development. In other words, AS was now being recognized as a part of the autism spectrum. Prior to 1994, these children and adults went undiagnosed—they were missed.
I was one of those missed children, and became one of the missed adults; this is my story.
Chapter One
They Missed It; They Missed Me
I am a survivor; an autism survivor.
I have been torn down, pulled to pieces, and have had my heart ripped from my chest slammed on the floor and stomped into the ground. But—I am still here to tell about it.
I grew up in a world before autism advocacy; born twenty years before Asperger’s Syndrome was acknowledged in the U.S. I now hear talk about autism being an epidemic. There are more autistic children being identified than ever before. I’ve heard people say that they didn’t see many autistic children when they were growing up, but I am here to tell you that we indeed were in your midst.
My parents did not notice, my teachers were blind to it, and my doctors misdiagnosed it. When they noticed me on tip-toes, they made me a ballerina. When I twirled round and round, I was only dancing. When I had imaginary friends, they said that was just what little girls did.
When the light bothered me, I was allergic to sunlight. When smells overwhelmed me, I had a sensitive stomach. When I only ate a few select items, I was picky. When I could not stray from my rigid routine, I was hard-headed.
When I thought I was smarter
than my teachers, I was obnoxious. When I couldn’t stand certain fabrics touching my body, I was being a princess. When I cried and screamed, I was spoiled. When I rocked back and forth, I was concentrating. When I sat alone, I was in my own world.
When I couldn’t keep up, I was not living up to my potential. When I didn’t think the way others did, I was just too smart for my own good. When I didn’t connect with my peers, I just didn’t care about them. When I misinterpreted situations, I was inconsiderate. When I asserted myself, I was inappropriate.
When the children’s screaming hurt my head, I was a bad mother. When I could not keep them on a schedule, or keep the house in tip-top shape, I was lazy. When I could not stick to a budget, I was irresponsible. When I couldn’t understand, I was stupid.
When I stayed in my pajamas for days, I was depressed. When I was overwhelmed by the world, I was agoraphobic. When I was tired and frightened, I had an anxiety disorder. When I realized something was wrong with me, I was making excuses.
The one thing my entire life’s experiences screamed, the one thing that was consistent, was that everything was my fault.
No one recognized my autism; no one saw that I had Asperger’s Syndrome. How could they? Asperger’s Syndrome, Aspies—I – did not exist; not yet.
Imaginary Friends and Obsessions
Autistic children do not participate in imaginary play. What about imaginary friends?
My friends were old men with bats.
Do imaginary friends fall into the category of imaginary play, or can they come about because of special interests and obsessions?
Some say that our imaginary friends present themselves in reaction to our loneliness and isolation. But when I had my imaginary friends, I was too young and oblivious to know I was isolated and lonely. I was not yet three years old.
Some of my earliest memories were of my imaginary friends, but those friends were “real” people who were a part of my very first all-consuming special interest—baseball.
I was born in the spring of 1974 in Brooklyn, New York, to an avid Yankee fan. My father and I watched ballgames every time they were televised. He would lay in bed watching our small black and white television while I lay sprawled across the foot of the bed engrossed in the game. I had to watch my friends play.
By the time I was three years old, I memorized the entire Yankee line-up, including stats. Dad was proud of my fact memorizing capabilities.
When my father could not throw the ball back and forth with me in the driveway, my baseball men were there to help with my training. I was obsessed with baseball, I was obsessed with the Yankees, and I was obsessed with my baseball men. They were my friends.
I did not leave the house, our family did not go on vacation, or to a restaurant, or anywhere without Reggie Jackson, Catfish Hunter, and Thurman Munster in tow. They couldn’t, or it would have caused a complete meltdown, resulting in my screaming and crying. They even had assigned seats in the back of our car. When my brother John was born, the baseball men had to sit on each other’s laps in order to fit—and there had to be room for my ten puppies.
Yes—I also traveled with ten imaginary puppies, and like my baseball men there was no leaving them home.
“We have a flat,” my father said, pulling the car onto the shoulder of the Belt Parkway. My father went to inspect the tire, and my puppies scurried out behind. He jacked up the car, and hauled the spare tire from the trunk.
As soon as we moving down the highway, I let out a blood-curling scream.
“What’s wrong?” My father thought he’d slammed my finger in the door, or something. He figured I must have been hurt to scream the way I did.
“My puppies, you left my puppies.”
After he changed the tire he hopped back into the car, but he closed the door too fast. Only seven puppies had time to jump in. He left three behind; stranded on the side of the road.
“Go back!” I screamed.
Trying to convince me that my puppies weren’t real would never work, so Dad walked through the tall grass to find my imaginary puppies, and then ushered them back into the car.
“There are only two. You lost one.”
My uncontrollable sobbing came to a sudden stop when Catfish, Thurman, and Reggie, who were leading their own search and rescue mission, returned with puppy number ten.
My baseball men climbed into their assigned seats, I lined up my ten puppies across the floor at my feet, and Dad was allowed to continue his journey to my grandmother’s house.
“You had your father roaming through the grass looking for imaginary puppies just to shut you up,” my mother said.
There’s not much else I can recall about those puppies. Maybe they grew up and it was time for them to be on their own, or maybe they just fell by the way side as baseball became the most important thing in my universe.
“I don’t have any narrowly focused special interests, no all-consuming obsessions—not during childhood.”
I protested my diagnosis, but only for a moment. I was a baseball obsessed preschooler.
I knew all the players; I knew their numbers.
I knew the line-up; I knew all the stats.
I knew the TV airtimes; I didn’t miss a game.
I knew the route to Cooperstown, New York, where the Baseball Hall of Fame is located, although, we never made the trip. I had a map.
Baseball was my obsession. I was four years old.
During “practice,” the times that my father and I played ball in the driveway, I was coached by one of my three baseball men. Dad and I threw the ball back and forth. When I threw to him I was pitching and Catfish was right there telling me how to stand, where to look, and how to lift up my leg like he does on the mound at the stadium.
When Dad threw the ball to me, I was a catcher. I did not stand up straight like other children did to catch the ball. I crouched down as per instruction by Thurman. I positioned my glove between my legs, adjusted my imaginary face plate, and prepared to catch the ball. I was extraordinarily talented according to my “coaches,” my “friends.” I was not a modest child.
Since I needed pitching and catching coaches, it makes sense that I chose a batter from the team to coach me when it was my turn to hit. Reggie taught me how to stand with my feet squarely facing home plate, where to position my hands on the bat, and continually reminded me to keep my eye on the ball.
I wonder what my father’s role in all our baseball playing was. Did he know he was just the guy who needed to throw that ball to me, catch when I pitched it back, and run after the balls I hit with the bat like Lou Piniella did in the outfield—or like Graig Nettles, number 9, on third base? My coaches taught me everything I needed to know about baseball—at least in my mind they did.
In return for all their help, my three baseball men accompanied us on family outings, ate dinner with us, and I was often seen making them hot dogs for lunch. This is also when my extensive baseball card collection began, Yankees only of course.
1979 was a sad year for baseball. Thurman Munson died in a plane crash, and Catfish Hunter retired. Two of my three baseball men were gone. My imaginary friends did not outlive their physical lives, or their Yankee baseball careers for that matter. But—1979 was the year the Yankees picked up Dave Righetti.
Dave Righetti; number 19.
Righetti started pitching for the New York Yankees in 1979, and although he did not become one of my imaginary friends, he rapidly became my favorite player. In 1981, Dave Righetti was assigned number 19, the day of my birth, thus starting my lifelong obsession with the number 19.
I was wrong. I did have special interests and all-consuming obsessions even when I was very young.
Chapter Two
The Little Encyclopedia
Consuming Information and Hyperlexia
Before 1994, Asperger’s Syndrome did not exist as a diagnosis in the United States. Autism would not have even been considered if a child was verbal, least of all very verbal, or if a child was
not intellectually challenged.
I was verbal, too verbal. I was smart, too smart for my own good.
Baseball stats were not the only bits of data that I consumed and stored. I consumed books; I memorized them. You could not read me a storybook and skip over anything. If I had already heard the book, you were in trouble.
My father used to read to me, but many times tried to skip over words thinking I wouldn’t know any better. After all, I couldn’t read—or, could I?
I promptly pointed out what he missed along with the page the text appeared on. Long before I entered kindergarten I didn’t need him to read to me any longer. I taught myself to read.
I honestly could not figure out why we were “learning” to read in school. I already knew how to read; therefore, all the kids around me knew also. We were just wasting time.
“We thought we had a little genius on our hands,” my mother said, “but you were just a little bitch.” That is the way my mother described me. She had no idea I was hyperlexic.
What is hyperlexia?
Hyperlexia is an ability to read way above what is expected for the child’s age, and is accompanied by a below average ability to comprehend spoken language. The hyperlexic child usually learns to speak through rote memory and heavy repetition. This child appears (and is) very intelligent, but often fails to comprehend the context of their words, or fails to comprehend their meanings and social implications.
I was not a quiet withdrawn child; in fact, I never shut up—ever. I rattled off my newly learned facts to anyone who would listen, and to those who wouldn’t. The interesting part though is I would only talk to adults. Children had nothing to contribute to the conversation; they thought I was odd. Sometimes they ran from me, or they ran off to play.
Adults, on the other hand, thought I was brilliant. They laughed at my little speeches, and thought it was cute when I recited lines from TV shows and music lyrics to answer their questions. Well—most of the time.
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