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5: Sensory Overload & Control

I have a lot of sensory issues. I have enough that I will be writing multiple posts where I talk about each sense and how I experience it because there’s just so much to talk about. This post is primarily to explain what sensory overload feels like to me and how overwhelming sensory input makes it necessary for me to control my environment.

If you don’t know anything about sensory overload or Sensory Processing Disorder, this (quite accurately terrifying) video is a good place to start. It does a fantastic job of painting a picture of the kind of sensory overload I tend to experience. I would say “Turn down the volume!” but since we Autistic people don’t get the luxury of turning down our surroundings, it could be interesting to try to watch with the volume as is. That being said, don’t blow out your eardrums or overwhelm yourself too much! If you have sensory issues and/or anxiety, I don’t recommend watching the video. I couldn’t make it through and what I did watch made me incredibly anxious and emotional. 

This is one example of one of my worst recent experiences with sensory overload:

My family visited me one summer while I was living and working in Japan. During one of our outings, I had a sensory overload induced meltdown. It was a hot, sunny day. Temperatures were over 100° F that day (38° C). Sunlight glittered off any shiny surface. The heat and brightness from the sun beating down on us made me feel nauseous and dizzy.The humidity stuck to me like a damp, hot, fuzzy blanket taken prematurely from the dryer and forcibly wrapped around me. The sweat trickling down my back was too much; it felt like insects crawling all over me. Tags and seams on my clothes felt like razorblades digging into my skin.  My feet throbbed from walking all day. Even the taste of water was too much. I couldn’t handle all the sounds around me, even after shoving earplugs so deep into my ears they ached.

I lashed out and snapped at my family and even (quietly) at strangers who were “too loud.” I didn’t want anyone touching me to comfort me. I had nervous twitches and had to keep tapping my fingers repetitively against my leg (a form of stimming) to focus and cope as I raced back to the hostel. When I got there, I grabbed my mother’s noise-cancelling headphones, curled up in the fetal position and pressed the headphones to my ears with the earplugs still inserted. Even that wasn’t enough. Even the sound of my own breathing was too much to handle. It felt like something was crawling under my skin. A few times, the sensation became too much and I had to flail my arms as hard as I could to get the feeling to stop. Eventually I could sit up, and then began rocking back and forth. Throughout it all, I was mostly nonverbal; I became mute….

I’ll write more about my sensory experiences in further posts, but I hope this gives some idea about how sensory processing difficulties can add up and overwhelm someone.

Control

Some people like or need to have a sense of control over a situation. Some people seek that control as a power trip. There’s often a bad connotation of the word “control.”  

But I personally find my occasional need for control stems from a want to have a say in what little I can in a world not made for me–not designed for me. In a society that feels chaotic and takes all my willpower to exist in without melting down, I’d say that a little control is justified.

So, what do I mean by control? Hopefully these things seem like small adjustments to neurotypicals, but they are huge for me. Ideally, I like to have some say in some of the following when out in a public setting:

  • Being able to choose where I sit.
    • If I can keep track of noises and people visually, I can deal better with noise. But if it’s a crowd, the noise is behind me, or I can’t find the source, I can’t anticipate when it will happen or see the source as it makes the sounds. Additionally, having someone or something behind me making noise makes me extremely uncomfortable to begin with. I prefer to be able to track things at all times. I need to know what sort of social, sensory input will be coming from and when or at least have a vague idea.
    • The lighting in a room can make all the difference, especially if it’s crowded!
    • Trying to sit somewhere I won’t see a TV screen that will distract and overstimulate me.
    • Not sitting next to or nearby someone with heavy perfume, cologne, or cigarette smoke on them.
  • Being able to control volume and type of sound
    • If the music is too loud or someone is drumming their fingers or clicking a pen incessantly, I need to be able to either wear earplugs or headphones or ask someone to stop a behavior.
  • Being able to choose what I want to/can eat without judgement
    • I have a lot of trouble eating certain foods. I’ll go into detail about this in a post about texture and taste, but being able to order whatever I want without comments or judgement is key.
  • I need to know I can leave
    • I need to know that I can get up from the table and escape a quiet space like the bathroom, outside, or the car.
    • Knowing I can leave a situation or environment, whether temporarily or permanently means I’m able to remain in a stressful situation much longer.

I often don’t get to have this kind of control over my environment in public, but I’m getting better at learning to ask those I’m with to accommodate me. I’m still working on not feeling selfish or overbearing, but these requests are not pickiness. These things are not whims or me being a control freak. These are small adjustments or allowances people can make (which often should not affect them much) that can make a tense, stressful, overwhelming, or even scary situation a pleasant one.

4: Spinning & Rocking

Spinning

While I was teaching in Japan, I often went to visit one of my favorite students in his private one-on-one classroom. He was in the first grade, Autistic, and the sweetest and funniest kid in the entire school. I’d often stop by to play and we really meshed well together. I understood his style of play and genuinely enjoyed myself. He knew I was a safe teacher who would always respect his boundaries and needs. We were buddies. But there was one thing that we didn’t have in common. He really loved to stand in the middle of the classroom and spin. One day while I grew nauseous watching him spin, a thought struck me.

“I never spun.” I shrugged and put it from my mind, remembering that all Autistic people are different–just as varied and unique as neurotypical people are.

It wasn’t until an hour or so later that it hit me. Wait… yes, I did. I spun obsessively. But not in a way that would seem out-of-place for your average American child in the 90s.

For a period of years, I would rollerblade for hours and hours every day on my own. And my absolute favorite thing to do while rollerblading? Spin. I would spend literally hours doing spins, skating in circles in the driveway, and spinning around support beams in our cement-floored basement.

Why did I do it? I remember it being extremely comforting. It was a time when my thoughts flowed naturally or not at all. I had mental clarity during that time, but was also able to just stop thinking when I wanted to. 

The feeling of spinning or skating in circles made my mind and body relax. There’s something very natural about a circle. Something beautiful. There’s no real beginning or end. It’s solid, predictable, and reliable.

Why did I like spinning so much? Perhaps it has to do with the sure, mindless, and unchanging certainty of a circle. Maybe it was something to do with the pressure on the body I could feel as I spun.

Maybe both. Or neither.

Rocking

Why do I rock when sitting and sway or rock on the balls of my feet while standing?

It feels so right. My anxiety drops away, I take deeper breaths, and my scattered thoughts slow. Rocking or swaying fill me with such a peace, calm, and genuine sense of wellbeing. Somewhere deep inside my chest something stills, unwinds, and then fills with a deep sense of assured peace.

Maybe it’s hard to understand, but it feels like getting home after a long day, being enfolded in a loved one’s arms, and sinking into a perfectly-temperatured bath all at once. It’s safe and blissful.

I’ve noticed that my rocking can give me a lot of insight into my mental, emotional, and sensorial states. The above-mentioned side-to-side rocking tends to be a soothing motion that might mean that I’m calm or content, especially if it’s slow. On the other hand, rocking front-to-back almost always means that I am in distress, panicked, or overstressed. The faster the rock, the greater the inner turmoil. 

Sometimes my body begins to rock involuntarily. This usually only happens when I am very tired. It’s a rapid, abrupt movement forwards and backward as opposed to my usual, slow and gently side-to-side sway. This is a clear warning sign that shouts MELTDOWN IMMINENT! (Take cover!!)

I realized that I often have a natural urge to rock to comfort or regulate myself, but that I don’t allow the motion. It’s just another thing that I’ve involuntarily suppressed in an attempt to pass as “normal.”

I’ve gotten better in the last year at allowing myself the freedom to rock when I need to. I almost always allow myself when in private and I’ve even gotten better at rocking gently in public when it will help me cope with a situation. Undoing years of masking and mimicry will take time, but it’s an essential part of unapologetically seeking my authentic self.

3: Small Talk & Eye Contact

Small Talk

[Note: As with every post on this blog, I can only speak for myself. Some Autistics are extroverts! I am not and this definitely contributes to my social limitations.]

I can become extremely fatigued when I have to engage in small talk. This fatigue is considerably lessened when I know the person I’m talking to; there’s just less to decode! But if it’s a stranger, I find it exhausting and often extremely pointless. To put it bluntly, I sometimes feel like my time and energy are being wasted. 

It’s not necessarily that I don’t want to connect with people. It’s not that I don’t see that person as worthy of my time. It’s that it’s very tiring for me to converse. If there is overwhelming sensory input around, it’s doubly so. Giving some of my precious energy to someone I don’t know and quite frankly will likely never meet again is very frustrating for me. I think that a lot of people probably like idle chatting. But when I’m really tired I’d rather stick to a friendly nod and possibly a few polite words. A stranger asking me how I am or what I’m doing or telling me about their grandkids or ranting about job stress? It’s just too much and might mean I can’t complete a task later on.

And yet, perhaps because it’s what society has programmed me to do, I wind up plastering on a smile and engaging in small talking more often than I’d like. My wife and I went into a store to buy a new wiper blade. There was a solitary employee behind the counter who was clearly bored and looking more-than-a-little lonely. He helped us and then he made a quip about a sports team playing that night. Now, I care very, very little for sports of any kind. But I struck up a brief conversation with him as he rung us up.

On our way home, my wife (who is even more introverted than I am) said, “You’re really good at pretending to be extroverted. You make it look effortless.” I was shocked and thought about it. “Actually, I’m really exhausted now,” I admitted. “I’m happy it seemed effortless, but that’s almost disturbing, isn’t it? I’ve gotten so good at faking it for other people.”

If I have the energy, I am willing to (and sometimes even interested in!) small talk with people whom I know I will build some sort of relationship with. If the chatting seems like it will lead to a relationship (professional, personal, or service-oriented) which will be reciprocal, I tend to put more effort into talking. I’m trying to get better at not engaging and forcing myself to converse with people that I don’t want to. This might come off as cold or even calculated, but it’s a survival technique to exist in a neurotypical world.

Eye Contact

I only recently realized just how very difficult and uncomfortable prolonged eye contact can be for me, especially if I am tired or overwhelmed. If the person is unfamiliar to me, an authority figure, or just intimidating, this doubles the discomfort. I don’t mind occasionally making eye contact with people that I know and feel comfortable with. I very rarely have any trouble looking in my wife’s eyes, for example.

Eye contact seems somehow inherently personal to me; it’s a private look into someone. It sometimes feels like if I look someone in the eyes for too long they will see right past the walls and into who I truly am. It can be incredibly unnerving to feel like someone is scanning my mask, analyzing me, and searching for cracks in my facade of social competence. It can feel really invasive and creepy.

When I do make eye contact, it’s just another thing I am hyper-aware of:  Don’t look away. They’ll think you’re dishonest or insincere. Is this enough eye contact? Ok, they looked away. I can rest for a while. What facial expression is that? Why did they move like that? Am I making too much eye contact? Not enough? UGH, I can’t concentrate!!

I’ve found that that inner dialogue and monitoring can be so distracting that I can focus on a conversation more clearly by not looking at a person. When I do this, however, I’m still plagued with thoughts like: Is it weird to them that I’m staring out the window? Do they think I’m not engaged? Have they noticed I’m not looking at them? More times than I can count, someone I’ve been speaking to has looked over their shoulder to see what I’m looking at.

Damned if I do, damned if I don’t, I guess! 

2: Meltdowns & Pillars

Meltdowns

It’s rare that I have a true meltdown. I do experience sensory overload (which I’ll talk about in another post) quite often, but a meltdown is a true collapse of my ability to function. I often hyperventilate. I cry or even wail uncontrollably. Sometimes I rock or sway or thrash or bang my hands on the ground. Other times I’m mute and stare blankly ahead; I may become unresponsive. I literally can’t even think about completing even the simplest of tasks.  I become needy and childlike and feel vulnerable and broken. I go masked, “normal” person to fully, obviously Autistic in 30 seconds flat. Not many people have seen me this way.

In the last year or so, I can think of three significant meltdowns:

  1. During the process of moving from Japan after 3 years living abroad.  I knew it would be a stressful process so I planned well in advanced, did everything I was supposed to (and more), and thought I was ready. I should have been more than prepared and it should have been a fairly painless process. Then some insane wrenches were thrown into the mix which involved unexpectedly needing to facilitate moving furniture across the city in a short amount of time with: a car/van, international license, and manpower which I didn’t possess all while attempting to pack, clean, and prepare for returning to the United States. I was dealing with grief over leaving my job and friends, a strong sense of shock and betrayal toward the people who had ruined all of my planning and hard work, and my fears about returning to the US. This was by-far the largest meltdown I can remember having and it was actually really terrifying for me (and my wife!).
  2. After a post-wedding bridal shower planned by a family friend for my wife and me. There were so many emotions that day, but the biggest drain was the mix of people who attended. There were friends from my middle and high school days, kids that I used to babysit as infants who are now taller than me, coworkers of my mom who I grew up looking up to, my wife, and my family. In that mix of people, I had no idea which mask to wear or what role to play. I couldn’t relax and be with my friends and show a more immature side to my mother’s coworkers. Nor did I feel entirely comfortable being my old babysitter side around my friends or family. I couldn’t even act like I do with my family or with my wife. I felt awkward almost the entire time. It was a lovely day and I had a lot of fun, but just before bed that night, my body and mind told me they had finally reached their limits. This was a mini meltdown and more akin to an anxiety attack due to exhaustion.
  3. During the moving process into our first official apartment together as a couple. This meltdown came after a day or two of the moving process, sitting in the car on the dreaded highway 40 minutes each way, unloading a storage unit into cars and trucks, hauling boxes inside, etc. While we were trying to fit our brand new couch through an unexpectedly (nearly too small) narrow doorway, I got a text abruptly changing plans for the remainder of the day and I had finally had enough. I felt the tension and panic build until I finally collapsed on the recently (triumphantly!) settled couch. I couldn’t bear to do one more thing until I rested. I cried and rocked and my wife and mom tucked me in on the couch to nap while everyone went to go get another load of boxes. This was a medium-sized meltdown which left me helpless for a while.

Pillars

When describing my meltdowns to my newest therapist, she said something that really hit home and made a lot of sense.

She held up her hand and touched each finger as she said, “Mental, Physical, Emotional, Social, Sensory. Each of these has a threshold. Most of the time, you’re able to keep at least some of them in balance and are able to handle things. You’ve developed ways to deal with a lot:  overstimulating things, constant pain from fibromyalgia, your social anxiety, etc… You’re constantly pushing you mind and body. But sometimes, when all or most of these pillars have been overtaxed for too long, your body and mind just can’t take any more. Things need to shut down for a while to compensate.”

This is the perfect explanation. When looking at the three meltdowns above, I can see the pattern well. These were already high-stress situations, but nine times out of ten I can handle the stress. Over the years I’ve developed ways to deal with a lot of challenges and function pretty smoothly in most situations. It’s these unique times when the majority of my pillars have been too overburdened for too long when I snap and cannot handle anything further.

I sometimes think of these pillars as video game stat bars. Sometimes I can almost feel one of my bars blinking red. LOW HP! ABORT MISSION!! If I’m out socializing, my meter dips further and further toward the danger line. It starts out at half if the environment is noisy, crowded, or bright. If I overexert myself, I’d better hope that I haven’t exerted myself too much in the other categories, otherwise I will have no choice when my mind and body shut down for a rest.

Meltdowns are not “tantrums” and I have very, very little control over myself when I have one. I am vulnerable. I am scared. I am exhausted. I dread the day that a bad meltdown happens around friends or even strangers, but I have hope that someone around me may recognize my needs and help me to a quiet space where I can refill my pillars.

You can hear more about my meltdowns and shutdowns and the pillars in my YouTube video:

1: Operating Manual

It sometimes feels like the average person is given a metaphorical operator’s manual at some point in their early socialization. Maybe not a completed manual, but a pretty solid start on one. This manual details the basics of both verbal and non-verbal communication. Where there are gaps, the user naturally picks things up from those around them and the lessons appear in their manual for later reference. I like to think that most of those people are given a Windows operating system manual. It sometimes feels like-not only was I given a Mac manual-it was given to me with whole pages torn out or missing, lines drawn through or fuzzed out, sections written in a different language….

The majority of people seem to be able to refer directly to their manual or learn quickly from others what to add to theirs, pages being organically added to their operating guide with relative ease. It feels like I’ve had to cobble together the missing pages based on social research, observation, and sheer trial and error.

I’ve taped in handwritten pages, crossed out, and rewritten…only to rip out pages and start all over again. I’ve made wild leaps to “normal” behaviors based on what I read in novels or saw on TV or watched in anime. My manual looks like the world’s most scatterbrained, sleep-deprived college freshman used it for note-taking with memos scrawled in the margin, half-erased, and stained with no small amount of tears staining the text.

Over time, my operating manual may look as thick as someone who naturally came built in with an easily created, neat one. But in actuality, my operating manual is a book made through struggle and not-a-little suffering.

While most social users seem to be able to learn from their manual and then put it aside (referring to it only in rare cases such as “What do I say when I need a break from my partner?”), I almost never put mine down. I’m constantly referring to it (for the most part subconsciously), recording results, and grumbling over the inconsistencies and the infuriating lack of any 100% certain, rational pattern in people’s behavior.

No wonder social interaction leaves me so drained. It’s a very rare person indeed that makes me forget about all (ok, MOST) of what I’ve cobbled together into my manual, set it aside, and just BE with them. So rare that I can count on one hand the number of people I can completely stop analyzing (again, mostly) and just interact in whatever way comes to my mind.

It’s exhausting.

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