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

by Jeannie Davide-Rivera

  Despite my feelings of relief at receiving a proper diagnosis, depression began to set in. The thoughts of all the needless pain, all the missed opportunities, all the things I could have done differently, if only I’d known, were hard to banish.

  The difference this time was that the depression did not stay very long. I rapidly found a way to communicate with other people like me—with other autistic adults.

  I had never been a big fan of online communications, did not have a Facebook page or Twitter account, and had very little use for technology like smart phones—but now all that has changed. The communities and friendships that I have found online with other autistic adults helped me move quickly from depression to learning to accept my condition.

  The more I learned about autism, the more I needed to know. I researched, and read—a lot. Then I began to write. Writing—being able to communicate what I could never say with my spoken words--has been a freeing and exhilarating experience.

  Writing is my form of communication. I may not call someone on the telephone; I cannot stand to talk on the phone. I may not visit, make play dates, or organize nights out with friends, but I will, if they are willing—write. I will write messages, emails, and chat online—it is the easiest, most honest way for me to communicate with the world.

  Chapter Twenty-Three

  Interacting With the World

  Although I long for socialization like any other person, social situations often are overwhelming and hinder communication for many of us on the spectrum.

  A simple invite to a coffee shop can be an overwhelming experience for an Aspie, those of us with Asperger’s Syndrome. The coffee machine frothing, customers placing orders, the door opening and shutting, letting in the distracting sounds from the outside, are just a few of the background noises that my senses fail to filter out. All the sounds come at me at the same time, all wanting my immediate attention.

  I desperately want to stick my orange and green foam earplugs into my ears, but that would be rude. Besides, they make me look like the bride of Frankenstein. I slip my hand into my pocket and squish them between my fingers instead. The cushiony feel of them between my fingertips makes me feel better; a stress ball and security blanket in one.

  Several women sit at the table sipping lattes and discussing their kids, the neighbor’s new boyfriend, and the latest church gossip. It all sounds like noise; jumbled words that all blend together, and I cannot hone in on any one voice, on any one topic, or any one conversation. I fidget in my seat. I’m lost and I can’t keep up, so I say nothing; I have no voice.

  The sun shines through the glass, sending blinding rays directly at our table; no one else notices. I slip my sunglasses over my eyes. We are just a tad too close to the restrooms, and when the door swings open, the faint smell of urine mixes with the smell of cappuccino in the air. My stomach churns, jumps, and I try not to heave; no one else smells it.

  The conversation fades into the background as I retreat into my own world. I have nothing to contribute, no idle chitchat to add. My mind is wandering—contemplating the next chapter of my book, my next blog post, the mound of books that I want to get back home to read. Back home to my computer screen. I love my computer—all my friends live in there; the people who I can talk to, the ones like me, the ones who understand me.

  My cellphone dings, and I smile on the inside. I steal a glance at the phone; do not be rude! A little square green face pops onto the screen. I know I received a text message. Another ding, a small envelope—an email is waiting. A tiny pastel blue bird chirps—a new tweet mentioned me. The royal blue “F” indicating a new Facebook message or comment has my fingers tapping the screen, forgetting where I am. What do my virtual friends have to say?

  Their words are in black and white; I can read them, process them, take a breath, and think about what I would like to say. I respond in my time, without pressure, without chitchat, with earplugs in, with quiet contemplation. They speak in turn, one message to read at a time, and if I miss a word I can go back and reread it again. No strange looks for wearing my sunglasses indoors, or odd stares because I didn’t get the joke. If I am overwhelmed I don’t have to respond immediately; I can breathe; I can be me.

  In my virtual world, I have a voice. I can “talk” without worrying about how I sound, if I spoke out of turn, or unwittingly offended someone. I can put my words to the page in a logical order, say what I mean, and mean what I say. In my fake world I am real, I am alive, and I have something worthwhile to say. In the real world, I am fake, voiceless; a mannequin posing, pretending to fit in. I grasp for logic, meaning, and order—but there is none.

  The conversation died down, but I hadn’t noticed. Purses were gathered, and coffee cups cleared. “We’ll have to do this again soon,” followed by a polite smile. Was she talking to me? Soon? How soon, when?

  “Um, Ok,” I say. I sling the strap to my purple purse across my shoulder, unclip my car keys from the belt loop on my jeans, grab my phone from the table, stick it into my back pocket, and head for the door—glad that my coffee with strangers is over. Exhausted.

  The next time I am invited to attend, I say I will, but don’t show up.

  “Everyone knows Jeannie; she just doesn’t know them.”

  That was the common phrase I heard in high school. A constant stream of hugs, smiles, and waves filled my days. I never understood how so many people who I didn’t know, knew me.

  Prosopagnosia, also known as “facial agnosia” or “face-blindness,” is a neurological disorder that makes facial recognition difficult or impossible. Two thirds of autistic children and adults have some degree of face-blindness. I live among those numbers.

  Do I know you? That is the question that runs through my head when someone I don’t recognize approaches me in public. They call me by name, ask about my children, my parents, and my work—I know I should know this person, but I do not.

  When my husband and I were first married, we attended a very large church in Brooklyn, New York where I often spoke to people having no idea who they were. I didn’t think there was anything wrong with me. I just figured that in such a large church I never ran into the same person twice.

  Being greeted by hugs and kisses from strangers has always made me uncomfortable; I don’t like to be touched. To add to my discomfort the odd looks these strangers gave me when I introduced myself were unnerving. When people approached us to talk, I assumed that my husband knew them. We talked for a while, they left, and my husband would say, “You know them, I introduced you last week.” You did?

  I met the same people at church, each Sunday, talked with them, and still did not recognize them the following week. It’s no wonder they looked at me like I was a lunatic when I introduced myself, yet again.

  When the same scene played itself out over and over, I began to believe what I had been told my entire life. I was a lazy, absent-minded, self-absorbed air-head who didn’t care enough about people to remember them. Or—I was stuck up, obnoxious, too good for anyone, and just ignored people; nothing could have been further from the truth.

  The first time I read about face-blindness, I was stunned. I had another one of those “ah ha” moments. The moments where I had to look back at my life with new eyes, evaluating it through the lens of autism.

  It took 38 years for me to be diagnosed with Asperger’s Syndrome or AS, a form of high functioning autism—38 years of confusing experiences.

  When I was a child, AS was not a known diagnosis in the United States. Although well-known in Europe for more than twenty years at the time, it only became a viable diagnosis in the U.S. in 1994; three years after I was out of high school, and two years after I’d dropped out of college the first time around.

  What is wrong with me? Why do I have trouble recognizing faces?

  We do not see with our eyes, we see with our brains. All of us—with or without autism see with our brains. Our eyes take in a snapshot, but it is our brains that process all the information in the
photo. It makes sense of all the patterns, categorizes them, and stores them for later use—this is recognition.

  I fail to recognize familiar faces, but I never fail to recognize a tree, or a cat, or the shapes of clouds. Why?

  A number of theories have arisen to answer this question. Maybe because we tend to not look people in the eye, or focus on their faces, we have a hard time remembering them. It is said that autistics tend to be socially uninterested—that we don’t care enough to remember people.

  Could it be an issue of weak central coherence?

  Those with weak central coherence tend to focus on details but lose track of, or don’t perceive, the whole. A tendency to focus on minute details, a portion of the face or specific feature, without taking in the whole picture could be partially responsible for many autistics having difficulty with facial recognition. All of these theories seem viable; however, I believe there is more to it than that.

  Facial recognition is isolated in the right temporal lobe in the fusiform face area. Non-facial recognition happens on the left side of the brain. In other words, all other details, pieces, and patterns are processed on the left side of the brain.

  Why does this matter? Autistics tend to do fairly well on pattern recognition tests—significantly better than their neuro-typical counterparts, but do poorly on facial recognition tests. The opposite is true for neuro-typical people, who perform very well on facial recognition test, but do poorly in pattern recognition. In the autistic brain, it seems that the fusiform face area does not function the way other people’s do. This could explain why I wouldn’t recognize you if you stood on your head—or would I?

  Tests showed that autistics were able to recognize faces that they viewed upside down. Researchers found that the circuitry that recognizes faces only works on faces that are right side up. Upside down faces are routed to the left side of the brain to be processed, like any other image. The upside down faces processed like patterns, and autistics recognized those facial patterns.

  “How did you know it was me?” a friend asked, pulling her mask from her face.

  Costume parties, for me, are like any other social gathering. If I knew you well, I recognized you. It did not matter what you used to cover your face. I recognized the contour of my friend’s hands, her ring, the shoes we bought at the mall that summer, the way she stood and swished her head back and forth when she talked. I spotted her from across the room, without hearing her say a word or knowing what costume she was wearing.

  Most people rely on facial features to recognize someone they know. I’ve always wondered why bank robbers wore ski masks, but did not disguise the rest of the body. And I thought it was ridiculous that in superhero movies no one recognized their loved ones because they wore a mask over their face. Don’t all people rely on other details to recognize people they know?

  When I think of my brother, I can form a mental picture of his face in my mind. I have no problem recognizing people who I know well. But I can also bring up just as sharp a mental picture of his hands, or the way he has this one thick vein that rolls back and forth over his wrist bone. My oldest brother has hands exactly like my mother’s, my father’s hands look exactly like his father’s, and my son’s feet are very similar to my youngest brother’s feet. I would recognize the way the hair lies across my husband’s arms, and would recognize him even if he wore a mask. These details are as vivid as any face I can recall.

  For several years I worked in prisons. My co-workers often wore uniforms, and were stationed at the same posts day after day. On a daily basis, I recognized them, said hello, knew their names—but if I saw them outside work, I did not recognize them. If their uniform was off, or they were not where they should be—at their post—then I did not recognize them. I processed the whole situation—the person, in uniform, sitting behind that desk. I was not processing the person’s face. Place this same person in the supermarket, at the post office, or in the school cafeteria eating with their children, and I do not recognize them at all.

  Many people have had the experience of seeing someone, and not being able to “place” their face; they know the person who stands before them from somewhere, but can’t remember where. Or, they know the face and cannot recall a name. I too, have had these types of experiences with those that I have had contact with often enough to recognize something about them. But—more often than not, I simply do not recognize them at all. There is no inkling of familiarity, no spark of recognition; it is as if I am staring into the face of a complete and total stranger.

  When I see people out of context, somewhere I do not expect them to be, someone I have not seen often, or someone I have not seen in a long time, I will not recognize them. I will stroll past them in the supermarket just as I would anyone else I didn’t know. Many times, this will cause people to think that I am ignoring them—on purpose, when the truth is I didn’t even know I knew them.

  I continually have difficulty recognizing my son’s teachers at school despite the fact that I see them where I expect to, and that I’ve meet them several times. This year, after discovering my degree of face-blindness, I set out to remember what my son’s teacher looked like.

  The first time I met her, she must have thought there was something seriously wrong with me. She spoke, and I stared. I caught myself noticing the color of her hair, and the style in which she had it brushed, her outfit, even her shoes, but I rarely looked at her face. I adjusted.

  I resolved to look directly at her face while she was speaking to me. Up until this point I was not consciously aware of how uncomfortable looking someone in the eye really was, but I was determined, so I persisted. I studied her. I registered her blue eyes and her narrow nose—all individual features. Surely, if I could memorize these features, I would recognize her the next time I came to school.

  Unfortunately my stare-fest was unsuccessful. Not only did I not recognize the woman the next time I visited my son’s classroom, but I also did not hear a word she said while talking to me. I was studying her, concentrating on her features, but her words never registered in my mind. I have absolutely no idea what she talked to me about. I left utterly confused, exhausted, and uncomfortable from the effort, and it didn’t even help me recognize her face the next time around—frustrating.

  I do not know how much contact I need to have with a person in order for their face to be permanently branded into my memory, but I know it must be a lot. I must know a person very well in order to recognize them even after a long absence. Apparently, just frequent contact is not enough to sustain a working facial memory.

  When I lived in a small town in South Carolina, I attended the same church for nearly two years. I recognized the people I had contact with at church frequently. I even began to recognize them in other places around town. However, several years later, living in a different South Carolina city, I ran into these same people from time to time, mostly at the mall, and had no spark of recognition.

  My husband and I usually stop and he chit chats for a while. I answer some questions, and when we walk away, he promptly informs me of where I know the person from. I think that I have become adept at chatting without letting on that I have no idea who I am talking to or why they are talking to me, but I could be wrong. My husband says that I get that “blank look” on my face, and he knows immediately that I don’t recognize to whom I am speaking.

  The knowledge of my autism has changed my perception, and allowed me to look with a new pair of eyes, with new lenses that filter everything through the knowledge of autism. That has been an eye-opening experience. Not a day goes by where I don’t learn something new about myself, about my life, my mind, my senses, and of course, my Autism Spectrum Disorder children.

  Growing up without knowing what was wrong with me was painful, but nothing compared to navigating adulthood. Many of my autistic traits that were readily apparent in childhood became masked in adolescence, but exacerbated in adulthood. When I was younger I “looked” autistic, as an older adult I
again am beginning to “look” autistic.

  The stresses and pressures of an adult life, family, marriage, children, and financial burdens put pressure on my ability to cope. I suppose I may be just too tired to pretend to be normal; too tired to consciously stop each instance of stimming, or every impending meltdown. I become more easily overloaded by sights, sounds, and smells than I was even a few years ago; my sensory processing issues seem more severe.

  As a child, I was carefree—happy, as I knew happy to be. When I grew into a young woman, life got messy, and continued to come unraveled as time went on. I had difficulty making friends, raising children, and communicating with my husband, largely due to my autism.

  Not that my autism itself was to blame, exactly, but my misunderstanding of myself and my continual misjudgment of others. I still have difficulty understanding others, and judging their actions and motives, but now I have a microscope to look at a situation with—a microscope that I know how to properly configure in order to evaluate my life.

  The beauty of finally receiving a proper diagnosis is that I have been able to connect to the world, to people like me, to other “Aspies”. I have been able to share my experiences without eyebrows raised and people looking at me like I am from Mars. I now treasure these people who not only listen to my rambling, but help me to understand more about myself and to know for the first time in my life that I truly am not alone.