26: Sick While Autistic

Ah, cold and flu season. Never fun for anyone, but doubly less so for many Autistic people. I’m currently experiencing a particularly nasty virus and it’s been an interesting time reflecting on sickness while in bed with a virus for the first time since my diagnosis as Autistic. I’ve noticed a lot and it’s helped me unpack a lot of shame (and a little trauma) from a childhood of fairly frequent illnesses.

[Content warning: brief mention of trauma (in last bullet point), mental health complications of being sick (second bullet point).]

So let’s unpack some of it together, shall we?

    • First let’s consider that many Autistic people have chronic illnesses and conditions like fibromyalgia, chronic fatigue/M.E., Ehlers-Danlos Syndrome, etc. We may seldom feel well on an average day, but may have learned to more-or-less cope with being chronically ill. Add in extra unpleasantness that only exacerbates our symptoms and we are champions for getting through any additional illness.
    • Consider also that many of us also have chronic mental health obstacles like anxiety, depression, PTSD, and more. The point made above applies equally to mental illness. We have a lot to deal with on a healthier day and added illness makes that fight more difficult.
    • Give some thought too to the terrible sensory components of being ill: inflammation, pain, fever/chills, aches, pressure, various disgusting fluids, the feel of a stuffy nose, sweating, headaches, being more overwhelmed by sounds, changes in sense of smell or taste, etc. For someone with Sensory Processing Disorder, that can be a lot. It can be so incredibly overwhelming and can induce panic and anxiety attacks.
    • When sick, routines get chucked out the window. Many Autistic people thrive on the familiarity, predictability, and comfort of routine. One of our biggest comforts that allows us to mask and tolerate a good deal is suddenly and completely thrown out the window!!
    • Brain fog from feeling unwell makes it incredibly hard to mask and communicate. Masking and communicating as an Autistic person can be a near-constant game of mental gymnastics and being sick makes it even more difficult to play that game.
    • Everything listed above puts us several leaps closer to meltdowns and shutdowns. People who might ordinarily have a few a year might find themselves much more likely to have them. (Also see my piece on 2: Meltdowns & Pillars to understand why this is.)
    • We may experience extreme changes in our ability to do things we normally can. We may struggle to speak, regulate or identify emotions, eat unfamiliar foods, avoid meltdowns, communicate efficiently, etc. And those abilities may change rapidly and often while sick.
    • Lastly, consider the fact that many Autistics may have some level of trauma associated with being ill for a vast variety of reasons. I myself had several horrible bouts of illness as a child that were frightening for me. I also have gone through more medical testing than many people twice my age and things associated with being ill can make me incredibly scared and childlike.
    Phew, that’s a lot going on, right??

    So what can we as a sick Autistic or a caregiver of a sick Autistic person do?

    1) Validate and praise

    Really look at the list above of reasons why being sick as an Autistic might be extremely challenging:

    -If you are being hard on yourself, please try to be patient with yourself and validate your feelings. It’s really hard to be sick. You’re doing well, and you’re going to get through this! Make a list of things you’re doing well: taking meds, sleeping a lot, drinking fluids, keeping calm, etc.

    -If you are caring for an Autistic, please have patience. We might seem “dramatic” or “childish” from your perspective, but I challenge you to exercise empathy (lol here) and patience as you imagine what we may be going through. Validate the Autistic’s experience by saying things like “This is a really hard thing that you’re going through, but you’re doing such a great job. I’m proud of you for hanging in there.” Praise the efforts of the Autistic, even if they seem like small things to you. Do NOT make comments belittling the experience. If you need to, step away for a while (when safe) and practice some self care until you are calmer.

    2) Consider temperature, texture, and taste

    When ill, the very best things for me personally to combat the unpleasantness of sensory discomfort are the three T’s:

    Temperature: Using a cool washcloth or a heating pad can give me some feeling of control over my body and my pain. Drinking a hot or cold liquid can also help to ground me and take some panic away. Taking a shower or bath can help majorly too.

    Texture: Soothing stuffed animals, squishing silly putty, wearing fuzzy PJs, etc. are all small things that can make a big difference in keeping calm.

    Taste: Using hard-candies like peppermint can help remind the body to stay present! (Be sure that you will not fall asleep and choke!) Sweet drinks or teas help me a lot too as do flavored things like Jello or similar.

    3) Make a surrogate routine

    Keep whatever you can in a routine–mealtimes, bedtime routines, etc. But of course many things will not be able to happen as usual. Try to make a temporary schedule with similar activities. For example, schedule times to read together when English class would normally happen.

    If that fails, make a temporary schedule anyway! Examples of things to include could be: take temperature, take medicine, drink fluids, watch TV show, sleep, rest time, Skype friend/family, shower or bathe, sensory time, etc. Knowing what’s coming up with some degree of certainty can help so much and it’s great to have a reminder of when you need to take medicine and when you last drank fluids.

    4) Chart a sick calendar

    For whatever reason, I know logically that I will get well, but on some level, I don’t. Being sick is such an all-consuming, exhausting, and sometimes scary thing for me. I need reassurance that I will get well soon.

    One thing I suggest is printing a week calendar and asking a loved one or doctor to help write out things like when the illness started, benchmarks for when the Autistic will probably be able to do certain things again, and a goal when they will probably feel much better. Feel free to make the benchmarks a period of a few days if you worry about making false promises.

    Knowing how long you have to endure something is the biggest step toward tolerating it.

    5) Make being sick less awful

    Pamper yourself or the Autistic. Watch some TV or a movie. Eat something yummy you normally save for special occasions. Play some video games.

    Now is a time for rest and relaxation. Put off whatever you can until another day. Those emails will still be there when you’re well. So will school projects and deadlines. If something is overwhelming, put it aside and do something to “indulge” in being sick: take naps, play games, etc.

    Take care of you because you are so so important.

    [Featured image description: A green plant with thin, long leaves with white and pink spots that look like chicken pox. Text reads “Being Sick as An Autistic Person”]

Video: Meltdowns & Shutdowns

Did you know that I have a Seeking Sara YouTube channel?

I make videos rather infrequently but am happy only making a few a year since writing is the medium that works best for me! Please enjoy.

What do I experience in a meltdown? What is a shutdown? What are pillars and how does paying attention to them help lessen my meltdowns/shutdowns?

 

Also, in case you missed it, I was recently published on both Thinking Person’s Guide to Autism (here) and The Mighty! (here)

 

23: Sensory Series (2) “Picky Eater”

For as long as I can remember, I’ve been ashamed of what I do and don’t eat. The stigma of being a “picky eater” has followed me around my whole life, bringing comments (and no small amount of exasperation) from family, friends, wait staff, and strangers alike.

Recently I’ve been examining why I struggle with certain foods and have come to the same conclusion as I have with much of my post-diagnosis self-exploration:  I’m actually incredibly strong and my experiences are real and valid.

Why am I so “picky”? Well, if you could experience my senses for a few hours, I bet you’d be more understanding, less judgmental, and I’m fairly certain you’d stop using the word “picky” pretty fast. Often times, I want desperately to like a food, to be able to order anything at random, or to just eat whatever is put in front of me without hesitation. But for me, food is almost always a relentlessly overpowering experience.

It’s not just taste that’s overwhelming–it’s texture, smell, color, consistency… What if I told you certain foods literally hurt to eat? That some trigger vivid memories that are disorientating and distressing? That some foods make me nauseous and panicky? Throw in IBS, general stomach and digestive issues, multiple food allergies and sensitivities, and it’s actually pretty impressive that I eat at all.

TASTE

I really struggle to eat bitter, sour, or spicy foods. The problem is, what you consider overwhelming is likely not what I do. Remember, all of my sensory input is dialed up and extra-sensitive. I’m not just being picky; I’m not overreacting. I really am experiencing things more intensely than most people. What you might find pleasant with just a hint of a kick might feel like an absolute assault on my senses.

Another factor is that sometimes my sensory input seems to go haywire somehow and, for example, a bitter taste might register just like bile to me. No one else eating the same dish is having the problem, but I literally cannot eat another bite because it legitimately reminds me of throwing up.

TEXTURE

Texture is a huge factor as well. Texture no-go’s for me include: peaches, coleslaw, celery, Japanese konyaku, warm peanut butter, etc. I can’t really explain why some of these things are difficult for me, but the sensation can be so uncomfortable that my jaw locks up. This can be a full-body experience, causing pain, discomfort, chills, headaches, and tics if I’m required to eat something for whatever reason.

TOO MANY TASTES AT ONCE

Even if I like certain tastes, too many at once is also overwhelming. There are not many meals I order out that don’t include me saying, “I’d like the (meal), but without (list of ingredients). So basically just the (stuff I still want).” The things I take off make the difference between me being physically able to eat the dish and literally not being able to eat it without melting down or extreme distress.

IN CONCLUSION

I debated making a list of all the foods I struggle to eat, but decided against it. Maybe some day I will, but for now, I still struggle with embarrassment from a lifetime of stigma related to what’s difficult or painful for me to eat and I’ve decided to focus elsewhere.

I’m currently on a journey of self-acceptance and I’m finding it more productive to focus on my “Can Do” list than my “Can’t Do” list. I’ve come a long way in trying new foods, and I’m working on becoming more accepting that 1) I function differently and it’s okay not to eat foods that are difficult and 2) it’s actually impressive what I do eat and I should give myself more credit.


BONUS:

STIMMING THROUGH FOOD

While tracking what foods are difficult for me to eat, which I refuse to eat, and which I love to eat, I noticed that I draw on certain foods as a massive comfort; I actually stim by eating these foods, usually in a ritualistic manner. They include foods like applesauce, crackers, pretzels, oatmeal… notice a pattern? When I’m exhausted or overloaded, I can’t deal with any intense or unpleasant colors, smells, textures, or tastes. Eating these familiar, bland foods is a source of comfort and helps me calm down. Now that I have identified that I am stimming through food, I have consciously begun working on stimming in other more healthy ways (allowing myself to rock, hand flapping, touching soft things, listening to a song on loop, etc.) to try to avoid stimming through binge-eating. (See 25: I have an eating disorder. for more on that.)

Click here Sensory Series Part 1, 16: Sensory Series (1) Auditory.

 

[image description: A “Swiss Cheese” Plant, (monstera friedrichsthalii). The plant has huge green leaves that have holes slashed through them, hence the resemblance to Swiss cheese.]

19: Poison People

There’s a type of person I categorize as a “Poison Person.” They may affect me mentally, emotionally, physically, socially, sensorially, or any combination of these. They will sap my coping and social skills until I am reduced to an anxious, exhausted blob. They may actually be wonderful people; they may even be people I desperately want to like. But they are like poison to me.

A Poison Person:

  • demands eye contact
    • implies dishonesty if little or no eye contact
  • invades personal space, gets in my face
    • may try to force hugs or kiss on the cheek
    • consistently moves closer when I move away
  • wears heavy perfume or scents, is a heavy smoker
  • is impatient
    • demands immediate responses and actions
  • talks loudly or yells
  • jumps topics frequently and rapidly
  • speaks extremely quickly. Is a “hyper-speed” talker all the time
  • jumps in to fill the silence when I’m trying to process something
    • supplies what they think I might want to say or what I might be feeling
    • derails my thought process, sometimes causing me to have to start all over again
  • mocks or makes fun of me/others
    • gossips constantly, makes me wonder what they say about me
  • treats others as inferior
    • is patronizing, condescending, infantilizing, or dismissive
  • lies frequently
    • cannot be trusted; breaks confidence
  • is un-empathetic or uncaring
  • has dry, abrasive humor and finds it funny when I can’t read it

A poison person may have more than one of these traits. Rarely, I meet someone who has ALL of these traits…and I run for cover.

In theory, I avoid a Poison Person at all costs, but unfortunately many PP’s can be fairly practiced at hiding these traits. Other times,  it’s someone who is not easily avoided (example: Boss).

The effect that a Poison Person can have on me is best illustrated through a story:

I went on a shopping trip with two fellow expats while studying in Japan. One was a fairly familiar friend, the other a casual acquaintance. Normally I would avoid going anywhere with people I didn’t know well, but I was desperate to get to this particular store and had no way of getting there otherwise.

The car ride to the store was only twenty minutes, but it felt like an eternity in hell. We took the acquaintance’s car and she had air “fresheners” all over. Those things are like little migraine bombs for me. I could have handled that much, if she hadn’t been a Poison Person in disguise. As she drove, words just kept rocketing out of her mouth like verbal diarrhea.

There was no pause in the stream of words for the entirety of the car ride and I was right next to her in the passenger seat. My friend in the backseat did little to engage in conversation, and I became the sole target for the onslaught. She often spoke more quickly than I could hear (much less process), all but shouted her words, adopted high-pitched voices to imitate people, kept locking eyes with me in the rearview mirror, often grew impatient (and louder) if I didn’t fill the infinitesimally brief silences with an adequate response within her self-allotted timeframe….

Unfortunately, it didn’t stop when we reached the store; she kept it up throughout the entire hour-long shopping trip as well. I had difficulty thinking through what I needed to get while in the store–even with a list in hand. I became anxious and wanted to either sink to the floor and cry, or run out the door and into the night. At one point I excused myself to go find some random item I didn’t even want so that I could have two minutes of calm in which to breathe deeply.

By the time we got back to the car, I was at the end of my rope. During the twenty minutes of overpowering one-sided conversation returning home, I had to focus on breathing and not throwing up. I was nauseous and had a pounding headache. My thoughts were scattered and I struggled to say anything at all. I answered her in one-syllable words, hoping she might get the hint. I didn’t feel comfortable asking her to speak more softly (or not at all) because it was her car, her driving, and her kindness that got me to the store at all and I didn’t want to be rude or ungrateful.

Once I got home, I was completely nonverbal. I couldn’t force myself to speak. Instead, I sat on the couch and rocked. By the time I had calmed down, it was time for bed and I collapsed into bed in absolute exhaustion. My final thought that night was, “God, it must be exhausting to be her….”

[image description: “Ghost Plants”, succulents of a pale green color. They took very pointy, yet beautiful. They are very geometrical in appearance.]

16: Sensory Series (1) Auditory

Many Autistic people struggle with sensory input–whether it be hypo- (under/low) or hyper- (over/high) sensitivity. All of my sensory experiences are on the hyper-sensitive end. This means that the world is a very overwhelming place for me a lot of the time. I wrote about 5: Sensory Overload & Control in a previous post.

Today’s post will start my “Sensory Series” where I talk about how I experience each sense individually and how I cope with such strong sensory input. Part 2 of the series can be found here: 23: Sensory Series (2) “Picky Eater”.



Hearing is the sense that gives me the most trouble to the point that I often wish I had a mute button for the world around me. Sometimes I even wonder what it would be like to have a cochlear implant that I could detach when sound was just too overpowering. The world is such a loud place and it seldom stops talking.

Some days are better than others. Sometimes my brain does a better job at filtering sounds toward the back of my mind, but most days the sound comes at me all at once in a jumble of confusing, overwhelming chaos. Each sound jockeys for position at the front of my mind as each insists I pay close attention to its deafening shouts. It’s an exhausting experience to be constantly inundated with such a loud, insistent world without the ability to filter any of it out.

Even now while I write this post in a relatively quiet room, sound is everywhere. The high-pitched chirping of a bird outside the window is joined by the electric whine of the TV (which is off), the shower running upstairs, a family member walking on the floor above me, a goose in the front yard honking incessantly, the walls and windows settling, the wind swooshing through the trees out back, an electric toothbrush pulsing, a door opening and closing, the hum of the ice maker, the neighbor’s car door slamming…. All loud. All insistent.

I am very easily startled, overwhelmed, or distracted by sounds. I’m likely to jump at a sudden loud noise and it can often be very painful. A lot of sounds are physically painful to me:  fireworks (which I also feel as a punch in the chest), alarms, sirens, anything shrill, etc. Some are less painful but more overwhelming; those make me feel like I’m drowning:  crowds, loud music, revving engines, etc.

These are some of the most extreme sounds for me:  fireworks, fire alarms, sirens of any kind, pitch-bending (sliding between notes), dentist drills, wood saws or drills, squealing bike brakes, shrill voices, whistles, people whistling, motorcycles revving, airplanes overhead, loud voices/shouting, loud and unexpected sounds in general, high-pitched noises, tapping or clicking, people talking behind me, crowds, out of key music, hairdryers, vacuum cleaners…. 

While I doubt that these things are pleasant for most people, they can be absolutely excruciating to me.

It’s important to note that auditory sensory overload isn’t always related to sounds I don’t like. When I’m overstimulated, I can’t handle any sound. Not my favorite song or an otherwise pleasant white noise or even the sound of a loved one’s voice. At that point, any sound is toxic until I recover.

Below are some examples of my intense auditory sensitivities to give you a better idea of my experiences:

LOOPING

Sometimes a noise or sound gets stuck in my head. I call this “looping” and it can be maddening. Think about something like nails on a chalkboard. (Even typing that makes me physically uncomfortable. But that cringing sensation that a lot of people experience is how many sounds feel to me!) Imagine that sound getting trapped in your head and sort of echoing again and again and again–long after the actual sound has passed. This happens to me fairly frequently and it’s extremely painful and distressing. 

ELECTRONICS

I did an experiment with a friend once while studying abroad. After months of being annoyed by the high-pitched whine of the old TV in the corner of the dorm kitchen, I finally grumbled, “It’s so LOUD!!” My friend looked at the sumo match on the TV, back to me, and then back to the cheering crowd on the screen. “Loud? Ok, I’ll turn it down.”

I shook my head. “Not the program. That shrill sound that comes from the TV.” He cocked his head and muted the TV–listening intently. To my surprise, he said he couldn’t hear it. I was completely shocked.

You can’t hear that? Seriously? It’s all I can hear…” We decided to do an experiment. I turned my back on the TV. He kept the volume muted and silently turned the TV on and off and I told him whether it was on or not based on the whining sound. I left the kitchen and started to walk down the hallway, calling back to him “ON! OFF!!… ON!OFF! No, STILL ON! Ha, tricky!” as I passed room after room.

I made it all the way down to the end of the hallway where I could still hear the faint sound of the shrill TV. When I got back into the room my friend was shaking his head.  “Is that why you always turn it off when no one’s watching it? I thought you just really hated sumo or something.”

FIRE ALARMS

One year while teaching in Japan, my desk was located directly beside the fire alarm. I didn’t realize this because it looked different from the ones I’m used to seeing. (In some ways I’m glad I didn’t know because if I had, I may not have been able to relax.) One day, we had an unexpected fire drill and the alarm blared directly at me. It was actual physical agony. I can still remember the physical pain throughout my body and the extreme nausea. I legitimately almost threw up. I was on edge for the rest of the day—jumpy and fidgety until I could go home and sit in a dark, quiet room with both earplugs and headphones.

When I was a kid and there were safety drills at school, I would be a complete wreck waiting for the alarm, during, and for the rest of the day. It would make me anxious and physically ill for the entire day. I remember trying to be “tough” like all the other kids who could walk down the hallways laughing and joking, but I always had to shove my fingers in my ears and grit my teeth as I raced out of the building.



Coping

Ear plugs: I wear earplugs while I sleep and I have done for at least a decade. I can’t fall asleep without them; I can’t even begin to relax and let down my guard without them. I’ve started to bring earplugs everywhere I go and wear them in restaurants especially.

Noise-cancelling headphones: When I first got my headphones, I wore them every chance I got but found that I panicked when I had to take them off for work. I think they actually made me more sensitive to sound and that was a horrifying discovery. Now I only wear them when I really, really need to avoid a sound that earplugs just won’t help with.

Stimming (Blocking or recovering from bad sensory input with good/neutral stimuli): Humming or singing softly to myself is one of the most effective tools to help me deal with auditory overstimulation and sensory overload. This works by blocking out other sounds and giving me some control over what I’m hearing. Unfortunately, it’s something that society has made me feel uncomfortable doing in public, but sometimes I can’t help but do it to survive. I’m getting better at doing it in situations where I need to.

Silence: I bathe in silence whenever possible. Silence is a breath of life.

For the next Sensory Series post on “picky” eating, click here: 23: Sensory Series (2) “Picky Eater”.

 

[image description: An office building that’s absolutely covered in dark green ivy. It even covers the majority of the windows. In places, the building appears to be made out of ivy.]

 

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.

 

[image description: A busy picture with half a dozen different types of flowers and plants of varying colors, shapes, and textures. Pinks, greens, oranges, reds, and greens make the picture a little overwhelming.]

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 husband!).

  2. After a post-wedding bridal shower planned by a family friend for my husband 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 husband, 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 husband. 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 husband 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.

 

[image description: A patch of Polka Dot plants, dark green plants with splotches of bright pink polka dots. The pink is vibrant and bright.]

 

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