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

by Jeannie Davide-Rivera

  In either intensity or focus—still I could not see it. I wanted to learn and the logical way to learn something is to study; so study I did. I’ve been told that I have an obsession with knowledge, that when I want to learn something I need to know everything about it. This is true, but I could not comprehend why or how this could be considered abnormal. If something was worth doing, then I had to do it all the way or not at all.

  I have no middle-ground. If I am going to only half-ass do something, then I am not going to bother doing it at all. So, I began to learn to play poker.

  I purchased book after book written by professional poker players. I have an entire bookcase in my master bedroom full of poker books; it is my poker library. I subscribed to Bluff and Card Player magazines, joined several online poker rooms, training sites, and paid for private coaching. I studied cash game, sit-n-go, and tournament strategies.

  I played poker every waking hour that I was possibly able. There were times I played for more than 24 hours without taking breaks to eat, sleep, or use the bathroom until I was about to burst. While I played, I watched tournaments on television, studying poker pros.

  On my television there was always a poker tournament playing. I was either watching The World Series of Poker, The World Poker Tour, or Poker After Dark on NBC. An absence of live programming didn’t stop me; I made certain to always have plenty of recorded episodes. When I wasn’t playing, which was not very often, or I was not watching live poker on television, I was watching movies about poker. My husband and 13-year-old loved Rounders with Matt Damon and Ed Norton, and luckily are the types who can watch and re-watch movies over and over again.

  I belonged to poker training sites and forums, which saved my husband from at least some of my endless ramblings about poker odds and strategies. My computer software recorded tens of thousands of hands that I played allowing me to watch replays of the games and study what I had done that was right or wrong. I reached the point where I could comfortably play ten tables at a time, and keep track of exactly what was happening on each table—as long as you didn’t speak to me.

  Even when I could not be in the house playing, I brought my poker books and magazines to the pool and sat reading while the boys swam. I was dead serious about playing poker, and if I was going to play, I was going to know what I was doing. I was studying—nothing abnormal about that!

  What is so special about special interests?

  I can focus for hours and hours on end, reading, writing, or playing poker. The rest of the world disappears; I can forget it exists. It calms me, and the stress melts away. When I’m focused on one of my interests, I lose track of time, forget to eat, and am annoyed at even the interruption of needing to use the bathroom.

  Interruptions invoke immediate anger. This is not a conscious response. It’s my first knee-jerk reaction. I can’t control it; anger is just the first response. I can, however, control my reaction to that anger. But make no mistake about it—that is not something that comes naturally or easily.

  Controlling my immediate reactions is one of those things that are easier said than done.

  To other people it is a mystery how I can focus so intently on special interests but have no sustainable focus for anything else. What they don’t understand is that being absorbed by my interests is how I decompress.

  Focusing on and sustaining life activities…jobs, budgets, housekeeping, etcetera, takes from me. It is an exhausting struggle; a desperate attempt to tread water while drowning.

  Life drains my well. Special interests fill it back up. I need that time, I need that filling, that relaxing, that decompressing, in order to accomplish the other tasks in my life.

  My special interests have changed throughout my life, and for a long time I was frustrated by this. It fed the idea that I can never stick with, or complete anything. Now I know that it is normal for these intense interests to change, and I try to not feel so bad about myself for putting so much energy into something only to have it lose its awe.

  This is the thing about Aspie special interests or obsessions—they may seem abnormal to the neuro-typical, non-autistic world, both in intensity and focus, but to us they are completely normal. Beyond being normal, our obsessions are positive, empowering, and absolutely necessary.

  What some may view as obsessive, odd, weird, abnormal, and troublesome is a necessary part of our happiness. Our interests allow us to decompress, calm down, focus our energy, and give us a reason to be excited about life—a purpose. An absence of obsessive interest leaves me feeling alone in the darkness.

  My poker interest brought me from the depths of my despair and had me looking forward to the next day, the next session.

  These special interests can be long-term life-long interests, span several years, as did my obsession with baseball as a child, or be very brief in duration, but they will all have one thing in common: intensity.

  The ability of an autistic person to focus so intently and completely on a topic of interest is a gift—one of their super-powers. Cultivate, encourage, and cherish these interests because in doing so you are cherishing the autistic person themselves.

  Although my poker playing gave me something to focus on, deep inside I still knew there was something missing, something wrong. Something I could neither understand nor put my finger upon—something just beyond my grasp.

  I was floating in this life, purposeless and alone searching for some kind of explanation for being me. I had little sense of identity. I saw no one else in my world like me, no one that understood me, that thought like me.

  I used to feel special, different and wonderful when I was very young, before the world showed me that everything I thought, said, or did was wrong. I lived in the blissfulness of youth without knowing how the world would not accept me.

  Back then there were a precious few who saw the sun rise and set on me, who didn't seek to change me, who only wanted to be a part of me. Those were the people long lost, that I again needed to find. If I could not find them, then I suppose I could create them. If I could not make friends, I could create them upon the blank pages of my computer screen, on my legal pads, in the stories I had bottled up inside.

  I could write myself a life; a life that I could live inside the pages of a book without having to interact with the real world around me, with a world who would not accept me the way I am. And so, I began to write. Writing became my new special interest. A special interest that took my life in a direction I never saw coming.

  Before I realized that I had absolutely no idea how to construct a story, or how to write properly, I penned an entire novel. Then, I wanted to learn how to do it the right way. The obsession began.

  I read book after book on the craft of writing. I was particularly interested in writing fictional stories—novels—basically because I could not write anything short. I simply had too much to say and too much trouble letting go of my "friends"—the ones I created on the pages to keep me company.

  I enrolled in writing workshops, and decided at 38 years-old to make another attempt at college, strictly online, and pursue a bachelor’s degree in English. It was this interest, this obsession, this obsessively seeking knowledge that brought me to my Asperger’s diagnosis.

  I never saw myself. My thoughts, my ideas, the way I did things were unique. There was no one in my life quite like me, except for maybe my grandmother. I never saw myself on the pages of stories, in fictional characters. In fact, I read very little fiction. I read to learn, to research, to study, to gain knowledge—never for entertainment. Life was not entertaining.

  Fictional characters left me just as confounded as "real" people. Even fictional people looked nothing like me. That is, until the day I enrolled in a Popular Fiction literature class.

  This was a class I was sure I could never enjoy. Reading and studying what was "popular" was never my thing. Actually, I didn't even recognize any of the books on the required reading list. Life in my bubble isolated me from the popular.

&nb
sp; Many of those books I would have never picked up to read, not unless I was forced to do so. The definition of popular fiction for the class’s purpose was books that struck a chord within society, as well as, within the individual, touching the heart of humanity. The heart of a people I didn't understand and felt I didn't belong to.

  During the last weeks of the class it finally happened. I found myself sprawled out upon the pages, meaning I came across a character that made perfect sense to me, a character whose logic and thought processes were very much like my own. To my chagrin, she confounded the rest of the class.

  Class discussions revealed their complete and utter misunderstanding of the character at hand, but I understood her. The character in the book had Asperger’s Syndrome.

  Up until this point in time, I had never heard the term let alone had any idea it was a form of autism. I didn't connect the dots. It didn't occur to me that there may be a reason I understood her, a reason I felt an odd kinship I'd never before felt.

  When my husband read the book he proclaimed, "That’s you!" I, being unable to relate one situation to another, to take information and generalize that information did not make the connection; I could not see it. There was simply no way I was autistic.

  I suppose the universe was trying to tell me something, because the truth began to stalk me.

  For the most part I pushed my similarity to the strange character out of my mind, but my husband was persistent. After doing some research he really felt that I could have Asperger’s.

  I had to admit that he made a compelling argument, and much of the information he read did sound like I fit the bill. Again, I pushed the thoughts aside.

  Two semesters after I took that Popular Fiction class, I did a study on American idioms for an English Language class. Idioms, metaphoric language, figures of speech have always driven me up the wall.

  As a child I had a terrible time deciphering the meaning of this language. It made no sense. Meaningless turns of phrases were all it was to me. As I grew I learned by memorizing the meanings of phrases, idioms, mostly by learning the origins of the phrases and explaining to people why their use of said phrase made no sense, which did not make me many friends.

  The research for this class's final paper brought me back to Asperger’s Syndrome. I began researching how children learn idioms, and often misinterpret their meanings or take the words literally. I had always done this so it was the logical place to start, which is when I stumbled upon it once again.

  Very young children and those with autism do not understand idioms. Children, however, grow and learn, but autistic adults often times find these useless turns of phrase confounding. I began to see myself, my thoughts, how my brain worked, in these same autistic adults.

  That was twice in the same year I saw reflections of me on the pages of books, and I had no choice but to start searching, to start looking under every rock for the familiar I could never find before.

  Another special interest emerged: Autism, Asperger’s Syndrome became one of my special interests. To me, that meant I had to learn everything there was to know about it, read every book, every account, every blog entry about and by autistic people. For the first time in my life, I was no longer alone; I was no longer scared; no longer confused. I am autistic, and there are others like me.

  The journey, my journey to find myself, to find out what was wrong with me had not come to an end, but to a beginning--to the beginning of my understanding of me.

  Less than one month later, I received an official diagnosis.

  Chapter Twenty-Two

  Grieving My Diagnosis

  Denial, anger, blame, tears, and depression—I went through them all before finally accepting my diagnosis.

  In the beginning I pushed the signs aside, denied the truth that was trying to flag me down and get my attention. But—I could not deny the facts. I went for neuropsychological testing, and took the Autism Quotient and Empathy Quotient tests, which assist in determining the likelihood of being on the autism spectrum. All the while, I told myself that I was just going to see what it says—for fun.

  Deep in the back of my mind I was confirming what I had already known, what I had already seen on paper—I am autistic. I tried to deny it but could not deny that I fit every single one of the diagnostic criteria for Asperger’s Syndrome. I had previously been diagnosed with Sensory Processing Disorder which is prevalent in those of us on the autism spectrum—in fact, in the new diagnostic criteria, hypo-or hyper-sensitivity is now a criterion in and of itself.

  I could not deny that I displayed characteristically autistic behaviors as a child, and as an adult—although I was not able to put a name to the behaviors before this time. I could deny my feelings—but facts, those were plain to see.

  I sat curled up on my recliner with my knees pulled into my chest. Tears flowed down my cheeks as I read about myself in book after book about Asperger’s Syndrome. I saw myself, and I watched the tears fall. Why hadn’t anyone seen it? Why didn’t they tell me? Why was I in tears?

  I was glad to know, finally, what was “wrong” with me. What was baffling was why I cried each time I read another symptom that fit. Each time I read an account of how another autistic woman experienced life that was different from the rest of the world, I cried. The experiences were similar to mine, but I had no idea they were different from the rest of the world’s experiences.

  I had no idea that I processed sensory information—sights, sounds, smells, touch, differently than everyone else. I automatically assumed that if I heard all those buzzing sounds, or smelled every single odor that lingered, then so did everyone else around me. It never occurred to me that I was experiencing the world differently, but it did explain why others looked at me like I had four heads when I explained it to them.

  My tears were tears of sadness. I grieved the life I didn’t have, the life that I wanted, the life that could have been so different if only I had known more about myself. My tears were tears of anger; anger toward my parents for not caring enough to see me for me, for not bothering to bring me to the right doctors, for not understanding me. Anger at all the doctors who misdiagnosed me, who drugged me into insensibility and blamed me for being out of my mind.

  I was angry that these so-called professionals, and there were many, who touched my life did not see my autism—maybe they did not want to see. After all, there is no magic pill to cure autism so they would not have been able to use their prescription pad to make my symptoms magically disappear.

  I cried tears of relief because I finally knew that I was not completely crazy. Relief that my sensory overloads were not “all in my head” as was suggested by my neurologist who should have known better. I was relieved to finally know that my difficulty interacting with the world around me, and my inability to connect with other people were not personal flaws—personal failures. In this regard, my realization of the truth was both a blessing and a curse.

  It was a blessing to know that all my failed attempts at socialization, and making new friends in new places were not all my fault. A curse to finally realize that what I was trying and failing at over and over was not going to work the next time around. It was not going to change; I was not going to change. My loneliness may last forever, and that, my friend, is depressing.

  Children and adults on the autism spectrum are prone to depression—I certainly am. Research has shown that nearly 65 percent of people with autism or Asperger’s Syndrome present with symptoms of depression. The depression usually develops in late adolescence and early adulthood. This comes as no surprise to me. Those are the years that social interaction and life demands change rapidly and can often overwhelm us.

  Due to the inability to express our emotions or communicate feelings of disturbance, anxiety or distress verbally, depression is often missed until it is so severe that it hinders our ability to function. I faxed my doctor a list of symptoms because I could not verbalize them when I was in his presence. I thought I had found a way to express
my emotional state—through the written word, but he thought that made me a little crazy.

  An autistic person with depression may not “appear” depressed to a physician that only sees them once every couple of months, due to their impairment in non-verbal expression. My medical records are filled with this two-word comment: Inappropriate affect.

  Inappropriate affect is when a person is saying one thing with their words but their facial expression, or body language is conveying a different story. When I finally found my words and was able to explain my feelings of depression and despair, I did so smiling. I was unaware that I was smiling; it certainly was not a smile of happiness—more likely it was anxiety slipping past my facade. When I am anxious, I tend to smile and make jokes-most of which no one else in the room seems to get.

  Many physicians commented that I conveyed happy events looking gloomy. I conveyed very troubling events and feelings that “would bother most other people,” but I was “cheerful, almost giddy.” The particular physician who wrote this comment in my records determined that I was simply lying. That because my affect was inappropriate, it was a sign that I was being untruthful—nothing could have been further from the truth.

  A minimum of four physicians, one general practitioner, two psychiatrists, and a neurologist, noted that I displayed inappropriate affect consistently, and none of them put the pieces of my puzzle together. The general practitioner sent me for a psych evaluation, the first psychiatrist decided I had major depression and panic anxiety disorder—by this time I most certainly did, the second psychiatrist determined I was a liar, and the neurologist decided that I was crazy and my sensory processing issues were “all in my head.”

  It is no wonder that I had tears of relief to find out, finally, the truth—to discover an explanation, a diagnosis that explained not one or two of my symptoms or behaviors but ALL of them. Finally, someone saw me.