Autism Behind The Eyes — Seen, Unseen

The local Starbucks is noisy. I have headphones on with nothing playing in them. I do this often. The feel of them in my ears, blocking out some of the sound, is usually all I need. But then there are days like today where the sound is too bright. Insistent. There are fewer lulls, troughs. Mostly all cresting energy spanking the ears. Above that is the tinny noise of the speakers pumping out the Beatles as best they can. I’ll have to finish this in another environment if it continues. Getting hard to focus.

Eye-watering pain. As a child, I thought it had to do with the sun reflecting off of the snow. Surely there was something to that, but the sun wasn’t always shining brightly nor snow on the ground reflecting it to have my eyes hurt so. It could happen any time of year in sunlight or when cloudy.

I’ve narrowed it down to lack of sleep and higher stress levels. Those were the culprits. One fed the other.

Those on the spectrum (autistic spectrum disorder) have a higher tendency for sleep disorders. There’s the third culprit.

Even as a child, getting to sleep was never a problem. Staying asleep was. One a.m. to four-ish a.m. is the wake-and-fade-until-the-alarm-sounds period. I do dream. My body seems to work hard doing all the dreaming it can, while it can. Vivid dreams filled with color, texture, scent, sound and emotion. Nightmares, of course. Can’t have all that visual thinking and detail without being able to endure some nightmares.

I remember waking from sleep and looking out of the top bed bunk window curtain when about five years old. I heard and saw a crooked tree branch scratching the side of the house. It was a monster, of course. Just the long, clawed arm of a monster who sought to reach little me in the top bunk bed. I stared at that thing for a very long time, not moving. I must have gone to sleep.

At a later date, I remember a doctor asking me about the monster at the window. What did I see? I must have mentioned it to Mom. Probably with some emotion — at least enough for her to get another opinion. I don’t think it was anything but a regular doctor’s visit. Mom was standing close. The doctor, closer. I don’t think anything was solved that day. In fact, I’m sure nothing was.

So sleep, or lack thereof, makes for increased stress. Increased stress makes for more disturbed sleep. I’ve had decades of meditation under my belt, but haven’t practiced it regularly in some time. Only small bursts throughout the day. Mindfulness. Attention to specific details in my environment or in my body or brain. This sort of thing, in longer form, will reduce my stress levels. I’ve experienced this, and it has served me well in the past.

Yeah. We all know things that are good for us. It’s those damn big, repeating steps to get there when the mind is tired and the will is being a baby that make such things an uphill climb.

The eye pain can be a simple annoyance or an intense penetrating stab that makes them water. If I don’t have sunglasses, then I have to blink more frequently, avert my gaze, or close my eyes. Sunglasses or eyes closed are such a relief at these times. As a child, I don’t recall anyone else having to avert their eyes or close them when I was having this problem. No one ever mentioned they had this difficulty, either. It’s just one of the issues possible with being on the spectrum. Sensory challenges.

Look into my eyes…

I hate that saying and its various implications. It is the product of some well-meaning marriage counselors, psychiatrists, lovers, people who think you aren’t paying attention, etc. It doesn’t take into account that there are some people out there (ASD) who gather most everything they need about you without having to look into your eyes at all. Minute physical expressions, habits of psyche that reach the nervous system and present in a multitude of ways: breath intake, exhalation or holding one’s breath, tone of voice, posture, fidgeting, and many other indicators when taken by themselves mean far less than as a whole. Some ASDs read this all at once, and some interpret it quite well. Others are just stressed out about it all. We don’t always know what it means with regards to ourselves, but we know pretty quickly who is not good for our sense of calm and stability.

More than this, looking in the eyes can actually be a painful experience. Unless one is on the spectrum, I don’t know that I could properly relate it in a way that encompasses the discomfort of it. I shall try.

Looking in someone’s eyes has never — not ever — felt less than a raw, unrelenting exposure accompanied by feelings of seeing something in another person they don’t really wish to share. It isn’t just what they are trying to project, but also the multitude of things they aren’t trying to project. This may be incongruent with their intent. Before I knew to keep quiet about such things, I used to ask why a person was feeling this way or that way — without their having said anything about how they were feeling (or wishing to discuss it). I’ve gotten enough responses to know that this, more than not, isn’t welcome in certain social settings. I grew out of that when seemingly happy people would break down and cry because of my observational curiosity.

An individual might wish to use their gaze to share what they think is intimacy, control, confidence, but some of us ASDs get a lot more — an unrelenting flood of presence, neediness, hurt, loss, insecurity, fear, shame, lust, love, pain. All this stuff I don’t know what to do with and yet is demanding some sort of response. Even if there isn’t a need for a response, what on earth do I do with all that? How can I possibly address it? Anxiety goes up. My emotions go in different directions based on this exposure and the impending sense that I need to deal with them. Again, reading well doesn’t always mean understanding well — especially with how it relates to me. There is anxiety with misunderstanding and confusion. Someone’s pain may be as strong as the love or confidence they are trying to project. I don’t get to be selective with what hits me; I get it all at once.

There’s looking at your eyes, and then there’s looking in your eyes…

There are tricks developed over my lifetime that mimic glancing in a person’s eyes and which seems to mollify enough people. There are places near the bridge of the nose, the corner of the eyes, the lids themselves, the hollow just above the top lid and below the eyebrow, and so on. There is looking at the eye, as in studying the way the light hits the color outside of the pupil. There is the furtive glance that seems enough to ping another’s sense that you are listening intently in a way they view as being attentive. This is fallacy, though. If looking at one’s eyes inspires great distraction because of all the information hitting us, how is that aiding being attentive?

I have an artist friend whose best listening is accomplished while doodling. My best listening is accomplished by hearing something I find interesting and then allowing that to shape my visual thoughts into something my brain sees that may not have anything to do with what is in my visual field.

Looking into someone’s eyes takes me away from actually seeing what I am hearing. I don’t know if that makes sense, but it is what actually happens. When I can best visualize what I hear, I can best retain what I hear. This means that my eyes are often looking off in some other direction while my brain summons up imagery shaped by the words that reach my ears. This also happens when typing my stories or even when writing this essay. I will often glance away to that relaxed position for my eyes while I am lost in the visual-creation in my brain. I frequently have no idea what my eyes are seeing when deep in this. They could be looking at another table, another person, the ceiling, etc., and I wouldn’t have any idea because I’m in my head.

Every single word, word-sound, from another person to me becomes a dynamic, textural imagery my brain feels and sees. Another person’s eyes are their focal point of ego and intention that often betrays their subtext emotional state — or lack thereof. People frequently do not expose in general conversation or during specific situations their subtext feelings of loss, pain, depression, envy and so on. Humans tend to keep these things for special occasions.

If you get the idea that there is a lot going on with what an ASD person has to deal with, you would be right. Through persistence and nearly fifty years of reflection and writing, I think I’m able to articulate what goes on inside my head with the body, brain and nervous system. I have gifted friends who describe to me their inner workings to the best of their ability, and I have difficulty imagining what it would be like not having all this intense stimuli from my senses, as seems their course in life.

Can I look in your eyes and hold contact? Sure. There are many things I can do that are uncomfortable, painful, distasteful and distracting to get by in life. That could almost be one definition for life: the process of doing the uncomfortable to promote survival. Just don’t expect my best listening experience. I actually have to avoid focusing on you to process my thoughts. If I’m looking right at you, I may not be seeing you.

I’ve been told that I hold eye contact well with some people. This usually wasn’t because I desired such a thing, but that they did. That it was a requirement of getting ahead or presenting oneself in certain social environments as confident or whatever it is they feel is important in this act. To some people it imparts a meaningful exchange, though it actually has nothing to do with understanding one another, individual to individual. Often, it is to satisfy a social norm or the ego of the person in front of you.

If you can’t tell, I dislike forced conformity regardless the reason. I find little progress when we can’t work to understand and accept and instead work to repress to conform. We wouldn’t have the majority of our advancements in science, the arts, or philosophy if everyone were required to think and act in the same manner and dare not be divergent.

I do mask and pass well, though. There are some with ASD (neurodivergent) who have greater difficulty doing this, but they might be seeing, feeling, or hearing specific things that overwhelm their ability to downplay the physical expression of their anxiety. They might flap, fidget extensively, perform cyclic actions, produce sounds that may irritate others, but which soothe the ASD individual.

On the other hand, there are also neurotypicals who are loud, crass, insensitive, crossing other people’s boundaries without a second thought, and so on. We live in a world not of black and white, but of diverse degrees of function, clarity of expression, and simply different ways of communicating. Just because someone doesn’t use their eyes to communicate, doesn’t mean they are the ones with reduced function. To expect everyone to behave in the same manner denies variety itself and drums exploration into disuse. It makes a disease of curiosity and discovery of the unknown, because of the preference for the safety and sureness of sameness.

I have other things to say about the experience of ASD. If you like this and would like more, just let me know. Communicate it. That’s always the best way to start.