And so, I exhaled, “I’m Autistic”.
No, I didn’t say it. I exhaled it–a deep breath drawn in more than 30 years ago. That which I had unknowingly taken in and hidden within me for decades, I was finally now free to release. Once an unwilling master of concealment, I may now become a truth–an imperfect, broken truth, but a truth nevertheless. A broken thing becoming a something.
I’ve always been Autistic; I just didn’t know it—clinically, medically—until very recently. What I did know about myself from a very early age was that my elementary school peers dismissed me as “socially retarded”, “weird”, “awkward”, “rude”, “crazy” and just about any other unkind term their minds could concoct or distort. I dreamed, though, of hearing only one word uttered in my general direction: my name. I just wished to have someone call me by my actual name.
While my peers engaged in their reindeer games, my teachers referred to me in very different ways. They called me “exceptionally gifted”, “mature beyond her years”, “concerned about the younger students”, “very worried about the animals in the snow”, “selectively mute”, and “unable to make friends.” Others have regarded me as “very knowledgeable”, “nice”, “aloof”, and “avoidant of social gatherings.” They’ve also called me “fascinating”, “irritatingly inflexible”, “mysterious”, “cold”, “detached”, “too quiet”, “intense”, “conflict avoidant” and my personal favorite, “enigmatic.” This was my riddle of Autism.
A person doesn’t mysteriously become Autistic as an adult; Autism manifests in early childhood, usually before the by the age of three and generally not later than age eight. Nowadays, due to awareness and aggressive efforts to identify children in need of support services, many Autistic children do not go unnoticed or unidentified, though those on the higher functioning side of the Autism Spectrum and girls may go unnoticed for years and some may develop clever adaptations to conceal impairment. And that’s what I did: I adapted in both positive and negative ways. I learned to cleverly conceal disapproved of behaviors, mirror social gestures (awkwardly but functionally enough as I entered adulthood), and avoid situations in which my sensory issues would become obvious. And yes, I actively fail to participate in social gatherings in which small talk is required. It’s not that I don’t like people; it’s that I am allergic to chit-chat and when you can’t easily engage in inefficient social niceties, people think you’re rude or not interested in them. So-called neurotypicals (“normal” people, whatever that means…) are bothered by silence in the same way I’m bothered by chatter.
So, why and how did I come about learning about my Autism at my age? I’ve been through a lot the last few years; it’s been very difficult for me. Watching people get married and have children made me realize how alone I actually was and how alone I had always been. I wanted to understand why I have always had such difficulty in establishing and maintaining familial, friendly, or romantic relationships—why I began avoiding social situations at a very young age.
So, as I do with anything that piques my interest, I began researching the topic of social awkwardness, searching for a solution. What I first came across was Asperger’s Syndrome. I recognized myself, yet not fully. Then, I started reading about the Autism Spectrum and that’s when everything started coming together. People often think of Autism as primarily being a social interaction disorder, but it’s far more complex than that. It involves speech impairment to varying degrees, repetitive behavior or speech, obsessive interests, difficulty maintaining expected eye contact, hyper or hypo sensitivity to sound, foods, light, noise, movement, etc., motor skills problems (for example, being clumsy or uncoordinated). And, also, a so-called “lack of empathy”. The Scarlet “E”, as I call it.
Though I realized that I had issues with speech, eye contact, sensory issues (sensory processing disorder), sleep cycle problems, and social interactions, I took a great exception to the notion that I might not be empathetic. Honestly, I kept reading “lack of empathy” in books, scholarly articles, and in reputable online sites that I simply began to dismiss the possibility that I could be Autistic.
But…then, I began to think critically about it, putting my emotions aside. Could I lack empathy and what did that actually mean? So, then, I began researching empathy and ultimately, felt some relief. I concluded that I don’t lack empathy…but that I do have a very hard time demonstrating it or acting up in certain social situations. I actually think that I am an empath—that I feel the emotions of others so strongly that it becomes very confusing and overwhelming for me. Also, people try to conceal their emotions with false words and actions, which results in conflicting messages being received.
I believe that my expression of empathy is different; I communicate it differently. For example, I seem to be verbally articulate and compassionate when someone needs advice and I am great with expressing written empathy. But I am overwhelmed by more than one person’s emotions at one time and therefore, social situations (especially emotional ones) present challenges for me when it comes to reacting appropriately to mental/emotional states of other individuals.
Though the social impairments of Autism are perhaps the most painful that I endure, I must also run through some of the other Autism-related challenges that I’ve experienced throughout my life.
While researching Autism, I learned that many Autistic individuals struggle with speech impairments—either permanently, temporarily, or in certain circumstances. Autistic individuals can be completely non-verbal, slur or mispronounce words, have lisps, or other speech abnormalities. Some of us can be selectively or intentionally mute, meaning that we can speak but we don’t want to or don’t feel the need to.
I have always had speech difficulties which mostly manifest in conversation and, oddly, not when I speak publicly. Following my mother’s untimely death, I found notes written by nursery school teachers that detailed my unwillingness to talk but that also noted that I seemed to be writing when most of the other toddlers hadn’t even learned the alphabet. When I was in the first grade, I was sent to the remedial reading group because I couldn’t pronounce “the” and a number of other words, but I knew each word in my head. I was made to sit the corner as a punishment for mispronouncing words. Because I had difficulty speaking, I had difficulty reading aloud during class reading time. At one point, my first grade teacher suggested I might be “mildly retarded”. (More on that story in another blog post.)
Because I was made to feel very ashamed about my speech difficulties, I turned to writing as my primary means of communication. At a very young age, I realized that writing could help me turn the garbled mess that would come out of mouth into something eloquent and articulate on paper. Writing is not my strength or my talent; it’s my adaptation. Writing is a manifestation of my struggle to survive and connect in a world in which spoken language and its related nuances left me behind.
Sensory Processing of Food and Smell
I imagine there’s a graveyard for all the food that Autistic children and adults have defiantly dismissed or disregarded. I imagine a place with gravestones that say, “Brian the Broccoli, who endured 12 hours of open-air spoilage on Emily’s plate” or “Henry the Hot Dog, who was flung across the room into a wall” or “Here lies the carrots and peas that Susan covertly picked out of the networking luncheon chicken entrée.” It’s funny but it’s also not funny. It can be an embarrassing problem in social settings.
For me, my strong sense of smell is the primary culprit in my food aversions. My sense of smell is so strong and powerful that I will gag or even vomit upon catching a whiff of certain foods. Peppers, especially jalapenos, are gut-wrenchingly god-awful. The odors of cabbage, pickles (why ruin cucumbers?), Brussel sprouts, broccoli, collard greens and sauerkraut have triggered migraines. But it’s not just the so-called good food that triggers a reaction in me; sweet-smelling foods wreak havoc for me to. I can’t walk into a donut shop without feeling queasy. I can’t eat cakes or cookies—things that most people love.
For whatever reasons, my eyes seem to register and process movement and other pieces of information in an unusual way. I can see things other people struggle to see—like optical illusions, needles in metaphorical haystacks, or cleverly concealed snipers (not a very useful skill in civilian life…). But, I’ll often miss what everyone else is seeing. For example, I’ll walk into a room and see the one thing or person who is out of place…but I won’t see the things and people who are correctly in place. My occipital lobe is wired for detecting deviations, which is wonderful for investigatory, scientific, mathematical, and creative work but not-so-great for navigating my way through verbal conversation.
Due to my visual processing peculiarities, I prefer the dark; I am an unrepentant night owl. There’s something about the movement of light and brightness that unsettles me, makes me nervous. During the day, there are too many people and things moving at once, but when it’s dark outside, the noise finally calms itself down. Perhaps this is why I felt strangely comfortable in night clubs—why night clubs didn’t make me feel anxious or socially awkward. Plus, music is soothing and hypnotic for me. Add darkness and music to a setting and I’ll settle in. I suspect that there are lots of Aspies who find social connection through the night life–clubs, darkened coffee shops, or lounges. It’s a convenient setting for not talking because the music is too loud; it’s a better sensory environment for some of us.
When I first approached my doctor about Autism, I was asked why I wanted to know at such a late age. “Why get a diagnosis when you can hold down a job and pay your bills?” If you read Autism blogs written by adults with a late diagnosis, you will notice a trend of the medical community essentially pooh-poohing our concerns. The medical community seems to think that if you can function enough to survive and not become a welfare burden then there’s no reason to seek diagnosis. We are forced to advocate for ourselves and to educate medical professionals. (I sometimes feel as if doctors should be paying me.) Most primary care physicians and adult psychologists/psychiatrists are not trained to identify and evaluate for Autism in adults because it’s still perceived as a disease/disorder or disability of childhood.
Well, I will frankly tell you why I sought a determination: because I have always felt defective and have been consistently rejected. I can’t count the number of times people have told me to just change, to become more extroverted, and to act normal. Believe me, I’ve tried to “be normal” and I keep failing at it despite my sincere efforts. The truth is: I can’t be normal because I am not neurotypical. My brain is simply different and it’s not a matter of choice or will. Finally having an explanation for all of my social, speech, and sensory issues has given me a sense of peace, though it’s not a comforting peace. I have had to mourn the passing of the normal girl I had hoped for that I now know definitively will never manifest. And so, I will move forward by doing what I’ve always done—write. I will write my way into a new understanding of who I am and who I want to be. Just as Tyrion Lannister drinks and knows things, I will write and know things.
So, write away, right away.