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)

 

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.]

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.

 

[image description: A massive, pink, rose-like flower is central to the photo. Dark green leaves peek out at the bottom of the picture.]