Autism Misunderstood

By Eric E. Cane

Eric E. Cane reveals some of his personal autism spectrum disorder traits and how someone you may know for decades can hide it from you. He gives accounts from his life with ASD to help people understand the seriousness of this disorder when behind closed doors.

The audio version can be found on spotify here

Being misunderstood is something many of us struggle to avoid. When we don’t question our own knowledge, it can help reinforce ignorance or misunderstandings.

I had never deeply questioned how people think until I was challenged by others who said I did not think like normal people. I always felt that way, but I also thought everyone thought that way about themselves. But there have been enough conversations and misunderstandings in my life to bring about the realization that I, indeed, do not think like normal people.

I simply have to be okay with that. My brain is dyslexic, so I already had experience with being different with regards to reading, writing, and typing.

But actually thinking differently, that’s something else.

From an early age, I immediately connected with Spock on the original Star Trek. Rushing home from grade school to catch my favorite character on our black and white television was my favorite pastime. Spock stood out with such distinct clarity to me; there was little to misunderstand. The process of logic unmired by the emotional expressions of those around him…well, that just put me right with the world. There was someone with whom I could connect easily.

There are few people like that in my life. Most of my experiences relate to trying to understand or to reroute misunderstandings that arose because of what I thought was simply my way of looking at the world or the other person’s lack of understanding logical progression. Little did I know that how I was looking at the world was different because I was processing my senses differently than the people around me. My pathways of expression were also quite different. What bothered me seemed to have little effect on other people.

Part of why I’m writing this is simply to help people understand that autistic brain wiring simply can’t be turned off or rearranged to be like the majority of “normal” or neurotypical people in the world. As with narcotics or other medications and archaic and potentially harmful behavioral training, anyone could be dumbed-down or transformed into something the masses would be more comfortable having around. But where’s growth in that? Where’s the essential diversity of mind that is required to bring about new thoughts, ideas, processing?

One thing I do know: when working hard to suppress great parts of your baseline, natural expression to appear as something to appease those around you, it can come at a great price. In my, and many people on the autism spectrum, this price is anxiety, depression, suicidal thoughts and actual attempts at suicide.

When you have enough of a stressful time with your own body and its uncomfortably heightened sense of certain sounds, touch, scents, and anxiety over small changes in your environment, the disturbance of certain repeating patterns, etc., it’s no wonder that dealing with interactions with neurotypical human beings can add to that stress and become overwhelming at times.

Especially when they come at it from the angle of “just suck it up and move on.”

I know a lot of people have their mechanisms for sucking it up with alcohol, affairs, drug-induced departure from their responsibilities and worries — even if for just a short time.

It’s hard for them to understand that there isn’t a “suck it up” pathway or release mechanism in the autistic brain. It’s more of a suck it up until you can no longer. And neurotypicals tend to forget or not understand that the autistic brain doesn’t shut off its senses. The constant irritations neurotypicals can’t even hear or see are ceaseless to those on the spectrum. When colors or brightness of lighting or persistent and repeating sounds or textures touching the skin aren’t relieved, then come breakdowns, shutdowns and depression. The autistic remedy for “sucking it up” is to remove themselves from life for a while. At least the intensity of what is bombarding them. At worst, actually and actively working to remove themselves from life.

At this point, I can say that I have beaten the odds of departing this life at my own hands. According to a large study, those with autism have a suicide rate nine times higher than those without it. They also have an average lifespan of fifty-four.

When you think the rest of the world thinks like you do, then you tend to also think the remedies for dealing with stresses are the same. It’s when you realize there are people in this world who actually have brains “wired” differently and their senses turned up from mildly annoying to overwhelming, then you might come to realize that what works for you may only work for you.

I’m tired of thinking about autism. I’m tired of hearing about it and want to just get on with life as if I’m normal. I mean, I’ve passed as normal long enough to make almost everyone believe I am — including, at times, fooling myself into believing it. That takes a special kind of ignorance. I believe it’s called denial.

But more than being tired of thinking about autism is the fatigue from dealing with people who — in subtle and gross ways — work to nudge you back to denying your autism right along with them. To ignore the deep causes of autism-related anxiety and depression and just get on with life.

I mean everyone has some anxiety, right? Everyone has a little depression every once in a while, right? With regards to autism, being on the spectrum, that’s like saying, “Everyone is a little blind, right? Everyone is a little paralyzed, right?” I mean really, just closing our eyes allows us to experience what it is like being blind, right? Holding ourselves really still is equal to feeling what it is like being paralyzed, right?

Obviously not.

But this is the dismissive and sometimes insulting equivalent of people with no direct experience of autism trivializing people on the spectrum who are going through a challenging life made a bit more challenging because of a difference in actual brain and sensory processing.

I get it. We all have something bothering us or challenging us, why spend time dwelling on it? These things pass, let’s just move on to the next thing.

It would be wonderful if the anxiety, heightened sensory stimuli, or misunderstandings with other people just went away — that it could simply become an afterthought easily dismissed or time-dependent where it fades away with the ticking of the clock.

But it’s a brain-processing thing. It’s like looking at the same letters and physically (in the mind) seeing them backwards, reversed or out of order. Dyslexia. I know about this first hand. It makes some reading a challenge and can’t just be dismissed, turned off, or simply wait to pass. It’s there one-hundred percent of the time. I’ve learned to deal with it and double or triple-check myself when there is the slightest chance that what I just read — or written — was not exactly what I saw. Most of the time I catch the problem and adjust well enough. What this means is I just have a different workload for my brain than the average person. To the outsider, I look quite normal reading or writing. One couldn’t tell by looking at me how many times I reread a word or retyped a single word or sentence to get the meaning as intended.

It’s the same with being on the spectrum. I believe I look “normal” and, for the most part, I think I act normally to other people. In some cases — especially in certain group settings — I may appear simply as a quiet or reserved person who is observing events, peacefully. Often though, I find an excuse to slip off to be by myself and away from the stimulus overload. In any group setting, there is frequently an assault on my senses. That’s when anxiety rises. It would be impolite to ask everyone just to sit quietly when they are at some gathering.

When my father passed, I was knocked out of my life in a way I couldn’t have prepared. I was lost in more ways than one. My dear friend (who has autism traits) unknowingly did the best thing in the world for me. She didn’t console me, touch me, talk to me. She just sat near me. For a long time. In different places. She was just there, and it was the strongest demonstration of caring and respect for me that I could have asked of anyone. She demanded nothing of me, meaning no social interaction. She didn’t distract through touch or sound or action. She was just a silent, strong companion that I knew was there. Her presence in that way helped me deal with my utter turmoil and inner disarray and the subsequent piecing together of myself. She has seen me with my mask off in the most revealing manner.

Masking

Why should the greater mass of humanity who share other similar characteristics have to deal with or change their understanding of people who are in a minority?

Well, there’s that compassion thingy. It extends in every direction from all parties on this planet, not just the majority. It becomes a threaded connection that allows for growth, adaptation and opportunity. Compassion increases when there is understanding, when we have walked in another’s shoes or at least read about or heard first-hand from those who not only have a difference of opinion, but of function. That how we see the world and interact with it is different, but no less important or valuable.

There’s power in that. At the least, there is a niche market for those looking to capitalize on it.

Among you are people who, on the surface, seem perhaps a little “off” in some ways, but otherwise appear just as normal as you.

When they are with you.

It’s what you don’t see when they are alone or when among people with whom they feel safe to be themselves. Some of us don’t have anyone who fits that description.

Neurotypicals form their relationships with us and their internal view of us based on a history of experiences with them. Nothing unusual about that.

What also is not unusual is the great amount of time and effort we on the spectrum have put in to appear normal to the rest of you.

This isn’t a specifically conscious thing. It’s a survival thing. The lone human tends to have fewer support systems for survival than those belonging in a group. Being aware that many of your actions may not only be misunderstood by other people (and sometimes even yourself), they might also be the cause of shunning, shame, or abuse.

Observing and understanding how to act “normal” among neurotypicals is a carefully-studied thing. Autism expression can be loud, awkward, incessantly repetitive, or seemingly unhinged. Now imagine that these types of expressions aren’t well-received by the people around you. I feel you wouldn’t have a hard time imagining that. There then comes a culling of natural expression (that can help relieve anxiety for those on the spectrum) for the trade-off of being accepted — or at least not abused, shunned — by those around them.

Here’s a related anecdote…

Many of us have been in various waiting rooms or checkout lines in our lives. I have such angst watching people who have a creative, expressive child with them in these places where the child only wishes to dance or sing or act silly — and the parent is red-faced with frustration and anger trying to keep the child absolutely still.

Once, I watched a child dance quite elegantly behind his father while waiting in line at a restaurant. The father grabbed his son and pulled him to the side and told him it was the last time he was going to tell him to stop dancing. Be still.

I get tense just writing that.

I don’t understand that motivation. There was literally no one getting hurt or even put out of the way. The child was quite impressive with subtle skill and moving gracefully.

If the child isn’t hurting people’s ears with their singing or endangering themselves in other ways with their expression, then let them express.

The alternative is to not have children at all. That’s an easy way to solve this problem.

For those people who are so in need of a sense of control, just remember that allowing creative expression is a form of control. You choose to allow it and then — if you even retain just a little of your own creativity — you can mildly nudge that creative expression into something “more palatable” to those around you.

Mind you, your perception of what is palatable is formed by expectations not everyone around you actually holds.

Well, imagine what it’s like for us going through life with no clear understanding of the subtleties of social interactions — which just happen to be a very big part of interacting with other social beings who have particular standards for normal conversation, interactions, and acceptance. Vary from this, and people will definitely look at you (sometimes all at once), and you will know that you don’t measure up in some way they find meaningful. Or at least status quo.

Imagine that there are actually people who not only don’t understand the subtleties of social interactions, but have brain processing that severely limits them from ever understanding it or expressing it in a way the greater majority of people expect.

Under all of this social difficulty, the person on the spectrum has to deal with internal struggles that are different from those who are not on the spectrum.

I actually recall being anxious at three years old. I recall my first gaping maw of depression at the age of eight.

At those ages, I think it would be hard for even neurotypicals to understand what’s going on in their inner world and what are the causes of such feelings.

I feel I was fortunate to some degree being the middle child of nine. I had a laboratory of personalities and social interactions daily from an early age. And yes, an intense amount of stress from it. I studied and reflected on my actions, reactions, and behaviors and how each sibling was a very different human being. But each of them still seemed to be reading from the same playbook of normalcy.

I didn’t know why, but I was different. This was evident in how they acquired friends, fit in with groups — seemingly with ease — and quickly adjusted to group dynamics in a way I didn’t. I literally didn’t care about groups at all. It was too exhausting trying to interact with them en mass. I saw too many people give up who they were for group sameness.

I was also fortunate enough to have a large farm in which to lose myself when I needed to get away from the intensity of our large family social dynamics.

What all of these interactions did for me was help define, at an early age, how I presented myself to groups of people. The forming of a mask that changed ever so slightly depending on the needed social interaction or the quick summation of a group’s dynamics and allowed expressions. I learned over decades to refine my own expressions to fit in with people who don’t think like me or don’t know that I don’t think like them. People who aren’t aware of the constant anxiety I continue to deal with to this day. The mask dropped isn’t handled well by people who only know you though your looking out from behind it.

Anxiety

Finding the rest-pause in life and immersing in that non-intruding space that extracts no demands on our time or senses, allows many of us to restore our energy. Often, this is simply required in order to deal with people who get their energy from being among people and the stimuli of group social interactions.

People have known me to drop out of life at times. If it wasn’t emotionally, it was physically leaving to be alone somewhere for a week at a time — almost no interactions with anyone — just so I could deal with burnout, anxiety and depression. It wasn’t that I “couldn’t handle it” — hell, I spent my life among people who consumed large quantities of alcohol or other substances or who chose ill-considered actions to get away for a time from a life they couldn’t handle. I think I’m doing pretty good with my personally (mostly) non-destructive methods.

On a side note, if you think about it, military and law enforcement tactics to bring people to the edge of sanity are to blare music loudly over a long period of time so the suspects are worn down and give up. Add in a little sleep deprivation (sleep disorders are high on people with autism) and you have a nice cocktail for attrition.

Some people on the autism spectrum have few or all their senses turned up much higher all the time with no relief other than that which they can get from an intense lack of external stimuli. There are so many things people on the spectrum can hear, smell, see, taste, and feel that eludes neurotypicals. It’s not pleasant. This overstimulation builds an internal tension that is the subtext for difficult interactions with people who aren’t aware of a persistent hum from an overhead light. Or how the stripes on someone’s shirt are so distracting as to add to the stress the autistic person is already experiencing.

Part of having certain sensory stimuli turned up high necessitates a demand for deep focus. Maybe it’s simply just the byproduct of the same, a safety valve of sorts. Sometimes it’s the only way to get past all the noise. There is an unusual comfort being lost in a deep exploration of detail or the unrelenting pursuit of an interest. I think this develops early in life. It did with me. I remember many times being drawn strongly to something and then getting lost in it to the exclusion of not hearing the dinner bell, my parents, my eight siblings, or anything else. Hours and hours spent taking apart anything electric, sitting and reading entire sets of encyclopedias over and over again, as well as comic books — any book — and imagining myself away from what I was physically feeling and emotionally experiencing.

The problem with that kind of focus is it doesn’t have any social appeasement for those around you. There isn’t a lot of small talk or gentle way of excusing yourself so that others aren’t offended by your departure into deep details from one or more of your senses or safety-valve creative immersions. It often isn’t a choice, but a survival-instinct escape or a required comfort to prevent a shutdown or burnout. Socially, however, you might get responses like:

“Why did you ignore me?”

“Didn’t you hear me?”

“Wow, you don’t listen very well.”

“How many times do I have to repeat it?”

“Hello? Anyone there?”

“Fine, whatever.”

“You ok?”

There’s usually a demand for acknowledgement that another person is in the room with you (go figure :). If you depart mentally without taking them with you, then some people feel you are purposefully being offensive. At the least, spacey, impolite, or aloof.

The most I have to do with someone who really knows me (and there are only a few of these people in my life) is maybe hold up a finger to let them know I’m “involved” — if I even remember to do this. As I said, it isn’t always a choice, more like a hole I’ve fallen into for a moment. And many times I’m simply not aware of my transition. Those who really know me, allow for my seeming inattention in their safe presence and don’t take offense.

One of the ways my brain deals with sensory and other stress is with a well-developed, vivid imagination. I remember daydreams I’ve had from very early in my childhood. Intense, directed creativity is a way to focus away from sensory or emotionally overwhelming situations.The ease with which I enter a daydream or even structured visualization is effortless.

My imagination was (and is still) used to create scenarios to prepare me for different situations through scripting. I never realized how much I did this until I started paying attention to it.

Scripting

Since early in my life (1st and 2nd grade are my earliest recollections of this process) I’ve created scenario after scenario, encounter after encounter, in my imagination regarding things others might consider mundane. Talking to a cashier as I hunt for my wallet is one example. Another might be what I would say should the janitor come up to me and ask me to move for a moment while they clean near me? What would I say about a cool logo on someone’s shirt?

Many of these are developed in my head long before any actual event takes place. Anything that requires talking to or interacting with other human beings goes through some form of scripting repetition to help me through the eventuality of it. Mind you, it’s not about what they would say necessarily, it’s about what I would say. I would (and still do) repeat to myself phrases over and over with some slight variations. Frequently.

What scripting does in this manner allows me to flow words and sentences together in a way that helps overcome my tendency to traffic-jam my verbiage when I have to come up against some scenario for which I haven’t prepared. If my words flow easily when speaking with you, I’m either very comfortable with you (but that doesn’t always guarantee freedom from word-jams — sometimes just the opposite, especially when excited) or you can be sure I’ve already run these sentences through my head at some point previously.

Words don’t come easily in certain situations — especially when new events force me to turn my visual thoughts into spoken word.

This is the first time I’m actually writing about this, so I’m either sure to surprise people or perhaps connect with like minds who do this frequently every day as I do. Most people would probably say I am quite fluent and process language very well. They simply don’t know the amount of internal processing and repetition that actually goes into it.

Scripting doesn’t just stop with those types of scenarios, but also every kind of scenario one could imagine. Aside from the creative aspect of it, where it definitely benefits my creative writing, much of what inspires this subtext is anxiety. The gut-grabbing dread of having to talk to someone new or when a potentially uncomfortable situation arises even months away. There have been times where I’m quite sure I came across as lacking in verbal skills. At other times, the extreme opposite.

Misunderstanding

I can read with great detail subtle actions and expressions someone is projecting and also with high likelihood what they are hiding behind those projections. Reading in this way becomes easier when you spend all your life — or at least since you were about six years old — intently studying people because it was part of your brain’s processing to survive among them. Part of that is having some of my senses turned up high, and I was noticing things that were blaring out loud in one way or another.

One can think of this studying process as being dropped into a completely foreign land with a culture and language very different from your own. You need to interact well so you don’t cause misunderstanding or offense where your very life and potential livelihood are threatened — to say nothing of connecting with people who may eventually become friends. You spend a majority of your time among them analyzing their movements, patterns, speech and search to connect them to the deeper drives that motivate their actions. Again, as a method of survival first. In this imaginary place, you have no idea what you might say or do that sets people off negatively. None. How your posture, facial expression, eye contact or lack thereof, physical habits (stimming) may get you noticed certainly, but not in any way that would endear you to them.

I have laughed out loud in theaters where no one else laughed. I’m talking in places where no one even giggled, chortled, snickered, snorted or grinned.

This misunderstanding thing goes deep. Even if you understand the meaning of the words in this land of a different language, it doesn’t mean you understand how they relate to you.

This gap in understanding brings anxiety. People glancing at me in the theater as if I were seeing something else or just being uncomfortable because they could find no humor in the serious scene playing up on the screen.

Then there is the recognition that a lot of other people don’t connect with the way my brain works. It’s lonely. Not in the way of “woe is me I have no friends.” This is more of not being part of a shared experience. That I have to share my own and then bear the looks of others who question my existence at that moment or at least their seating arrangement in the theater.

Ah, well. That’s one thing that happens when my focus is so intense I forget about my surroundings.

Consistent Experience

Moving. A new job. The death of someone close. These are just some of the disruptions life brings. A person on the autism spectrum may have an even more difficult time adapting to these situations because of what they already experience at heightened levels.

Adding to these major changes are new sounds, textures, scents, patterns and lighting differences, which can dramatically shake the dubious life stability inherent in someone with autism. Taken just by themselves, the new sounds, textures, scents, etc., can cause great anxiety, shutdowns, and severe depression.

Seriously, a simple change such as adding a 50hz or 60hz frequency in the background outside of a building (that other people may not even hear) can feel like it’s boring into your brain to the point you can feel your chest tense, your heart rate and the heat of your body increase. Sweat can break out because you get no relief from it until you leave the area or the sound mercilessly shuts off on its own.

My fingers are sweating from remembering/experiencing and then typing about this.

I hate that seemingly simple things affect me to the degree they do — and my intense dislike for my reaction in this manner only adds more strain.

I actually started my own form of meditation around twelve years old. In truth, the base functionality of what I started back then is still with me in some of my more advanced meditation to this day. It started from watching an Incredible Hulk episode where David Banner was being taught a form of visualization to help contain the beast that dwells within him. Sounds silly, yes. But it actually afforded me a controlled break from what I was experiencing. I modified it to direct my thoughts to singular sounds, scents, textures, etc., of my choosing and then expanded it to body scans and the like. It is a muscle that has served me well.

When I am able to take advantage of it.

Sometimes, life throws so much at you, it’s all you can do just to stay on your feet and not fall down in some way. Originally, I wrote that as being metaphorical, but I have actually been in a grocery store during a particularly high-level stress period and grabbed the shelf to lower myself to the floor where I was going to just lie down on the cool tile for about a day.

I actually caught myself as I was dropping and jolted back to being upright. This is an example of the body and mind shutting down to the point the floor of a well-used grocery store was more inviting than anything in the world. Not only inviting, but necessary to where it was all I could think about.

A consistent experience helps people on the spectrum not have to deal with frequent changes that can pile on one another until a shutdown is triggered. This means that the exact same cereal I ate in the morning, day after day, for 15 or 20 years had a significant effect to help calm me. Just as watching a television series replay again and again nightly for nearly 35 years (at the time of this writing) also serves a purpose that helps bring order and stability to my life. A consistency of experience that allows me to return to it, should the rest of life introduce new and overwhelming changes.

It isn’t that I can’t adapt. In some ways people who are on the spectrum have to adapt far more for a variety of reasons:

• Their senses are reading unwelcome aspects of the environment constantly
• Their misinterpretation of emotional states can lead to incorrect expressions or replies
• Their not understanding the “gist of a statement”, where (for them) clarity and precision of speech is required in order to function properly
• Their deep sense of justice which overshadows cultural or social norms which may lead to unwelcome or unexpected expressions
• Their distancing from people or situations for no apparent reason as a means to prevent burnout or shutdowns

Again, much of this is shared here for the first time. The majority of people who have known me over years and years have no idea I go through this. I would be quite the person should I actually fully be how they describe me.

But this glimpse of what I am behind the mask shows something different. It gives a peek at humanity’s variety. Not only in the different ways each of us have to adapt, but also for the sometimes very different reasons which require us to adapt.

Or succumb.

If there is only one thing to come away with having read what I’ve written here over the course of nearly two weeks, it is this: when you see someone acting differently, remember that it might be an act. That the confidence, poise, and capable expression and functionality is well-practiced out of a necessity to fit-in using a body and mind that, genetically, is antithetical to the very notion.

Also realize that when these same people need to leave, go to another room, walk outside or just be away from anything and everything, they are experiencing things you may not even be hearing, seeing, smelling, or feeling.

Try to give them a little break when they don’t understand that what you’re feeling may or may not have any direct relationship to them.

Also, know that we feel deeply and read emotional — and other — tension in the environment in ways not always apparent to others. Just know that we don’t always understand how to express our feelings in a way that doesn’t give us away as being something different than “normal.”

Unnormally yours,

E.E.Cane

Note: I didn’t cover eye contact difficulties and more. But I’m sure these will come out in another article. This one is quite long already. Thank you for reading. Please share.