Am I in a Wax Museum?

The emergence of my nonverbal behavior always frightens me. When my ability to verbally communicate is swallowed, I feel powerless. Our world is not set up to facilitate nonverbal communication. This makes me feel like I’m at a dead end when I’m in a situation where I’ve lost my voice.

Sometimes, I’m not even aware that this has happened. I just stare stunned, nearly catatonic, blinking, perhaps nodding (if I’m lucky), otherwise, just like a puppet crafted without a mouth. The world moves around me and I feel like I’m standing still, the central axis pole of a merry-go-round with all the people and horses, music and lights bobbing up and down with carefree purpose around me. Sometimes I just watch in awe, oblivious to my nonparticipation. Other times, I feel like I’m my own statue in a wax museum, standing in a soundproof glass case around the action. The walls are sometimes a one-way mirror: I know people can see me, but they can’t hear me; or other times, I feel like I see everything but I’m concealed to the masses.

When I’m aware that I’m in a nonverbal spell, I feel like a scared child. I want to tuck myself into a ball and be carried away by a parent to safety. I want to be hugged and shielded. I become afraid that I will not stand up for what I want, or especially for what I need. Perhaps it’s my trauma background, but I sometimes get anxious that I’ll agree to things I don’t want to do. I’m not specifically referring to physical/trauma things, but less severe things that I still don’t want to do. It’s happened before: I’ve silently agreed to job offers, plans or commitments with others, giving people things that I didn’t want to part with, helping people in situations that seemed unsafe because they asked for help. A small shrug or nod “yes” seems to be a defense mechanism when I’m stunned or overwhelmed and can’t talk, even when I don’t want to agree. Thankfully, doctors usually have their patients’ best interests in mind, so that’s not typically an issue there, but I don’t get my medical questions answered, which usually sets my already-pervasive anxiety into a consuming tailspin! But like I said, I can’t take steps forward if I don’t even know they need to be taken, so this is a good starting place. I am now operating from a place of increased awareness of this issue so I can begin trying to navigate these aphasiac spells with a game plan that makes sense, which will hopefully instill some much-needed confidence to handle normal activities like medical appointments.

 

 

The Weight of Waiting

I hate waiting. I especially hate waiting for doctors because I’m usually nervous for the appointment for one reason or another, yet I imagine I spend nearly a week of every year in cumulative minutes waiting for doctors. With my bevy of health issues and the frequency of appointments, I wish I could rack up frequent-waiter minutes for free copays at the very least. Although I’ve never administered any sort of global survey, I’m confident that no one likes waiting for doctors. Every appointment has at least a three-tier wait: the weeks or months you have to wait to actually get the appointment on the books, the initial waiting room once the appointment day has arrived, and then the wait in the room after they’ve narrowed down the field to the top three.

Sensory processing disorder carries with it a multiplicative factor that exponentially increases the pain of waiting. The close proximity to other patients gives me a headache. Invariably, some woman is wearing perfume or is reading a magazine that contains a fragrance sample that wafts out with every page flip. The lights are always fluorescent, which bothers my eyes, and they have a constant buzz, which drives my brain crazy. It’s becoming more and more common for offices to have a TV in the waiting room for the “comfort” of the waiting patients. They’re always either too loud, or more often, playing some emotionally disturbing video: at my latest appointment, there was a violent movie; before that, I was at an office with a dramatic soap opera, which stressed me out. And then I have that weird empathy issue (empathy issue): If other patients in the waiting room are displaying physical pain or discomfort, I feel it too. The minutes drag on while my body mounts a mirroring pain response, reflective of what I see around me. The temperature is never right. It seems like it’s one of either two extremes. I have very poor thermoregulation, so I arrive equipped with various layers so I can try to self-regulate, but I’m always under-prepared, as the thermostats in these places must be set outside of what I consider to be the plausible range.

After all the waiting, I finally get to see the provider or someone on staff. This is where “bizarre-o nonverbal Amber” decides to assert herself (which is ironic because in doing so, she prevents “normal Amber” from being assertive!). No matter how much rehearsing or memorizing I do, outlining or even scriptwriting I bring to reference, or how much I’ve had to say about my issue prior to the appointment, it’s like I’m suddenly just a nodding, shrugging, and otherwise single-word utterance speaker. I think the stress of the appointment, the sensory overload of waiting, the pressure when it’s finally time to talk swallows me in a wave of stage fright, and the concern that my problems will suck up too much of the doctor’s time (I hate to be the reason others have to wait even longer) all combine in the least helpful way and transform my typically communicative and expressive self into a shadow. I recently told my autism therapist this after she asked how a particular appointment that we had discussed and “prepared” for. The need for the appointment had come up in our discussions the few days before the appointment. I admitted to her that I was particularly nervous for this appointment but I was not sure why. After some probing and exploring, I admitted that I was nervous that I would fail to be as proactive and assertive at the appointment as I intended to be and that I’d be overly passive and quiet and my needs would end up not getting met. After all, I venture to guess that most doctors aren’t mind readers and as mentioned, most are very busy. They aren’t going to stand there waiting in silence for the patient to form some semblance of additional information to impart on the discussion!

It turns out that it’s actually somewhat common for normally verbal (or even loquacious!) autistic people to have periods or situations where they are rendered non-verbal for one reason or another. I had no idea. I’ve discussed, and fully admit, that even on my best days, I’m not the most effective oral communicator, but I can usually get some number of words out, save for times I’m particularly scared or anxious or shy. Well, now after tracking the pattern, I see this does not hold true for appointments, which is a shame because you really have to be proactive in our physical and mental healthcare system on this country to get the help you need. My therapist said to either bring written notes that I directly give to the nurse, PA, or physician or go with a companion (interpreter).

This experience and revelation about what happens once I finally get my window of time with the doctor has me considering if there are other regular situations in which my ability to speak becomes significantly reduced. In fact, I’ve already identified several other routine occurrences where “nonverbal Amber” takes to the director’s chair. One of the primary functions of this blog is to help me identify and understand my various challenges so I can try to work on them. This seems like a more superficial one to chip away at when I need a little break from the elbow grease demanded by some of the more critical and challenging issues. And hey, I already said I go to appointments all the time; I’ve got an endless number of opportunities to practice!

Empaths: I Feel What You Feel

There’s a fair amount of controversy, confusion, and misunderstanding surrounding the relationship between empathy and autism. Of course, autism is a spectrum and there are as many presentations of it as there are autistic individuals, but one of the classic and traditional diagnostic criteria assessed empathy, with the notion that autistic people lack empathy. I don’t feel qualified or informed enough to comment on any sort of “autistic population” at large, but I do know that there is a subset of autistic people, particularly women, who are extremely empathetic. This is sometimes speculated to contribute to the frequency of females evading proper diagnosis at a younger age: the screening tools employed are looking for one thing (significant lack of empathy), while the characteristic is radically different. This makes as much sense as a taxonomist deciding that in order to be classified as a mammal, an animal must lay eggs. Sure, there are a handful of mammals that do (platypus and echidna), but many (and most) don’t.

It might surprise you to know that the adult females that I’ve met who have autism spectrum diagnoses tend to consider themselves to be overly sensitive and empathetic. My occupational therapist describes us as Empaths. Besides just understanding the emotions of others, we feel them, viscerally and emotionally. If someone is frustrated by a situation, we feel frustrated too. After the death of a friend’s loved one we may not even know personally, we cry because we know they cried. If someone is depressed, we absorb that emotion and join them in that place of heartache and sullen heaviness. It can even extend to physical mirroring, as I call it. In this context, as someone else describes or exhibits physical pain or discomfort, we may feel it as well. This is something I frequently experience, which is both bizarre and uncomfortable, both socially (embarrassing) and physically (who wants to experience additional pain?). If I’m trying to be a good listener and sympathize with someone’s discomfort or burden, my job doing that is polluted and challenged if I’m empathizing instead of sympathizing. It’s their time to complain and express; it’s my responsibility to be a supportive listener, keeping the story in their narrative instead of entering it as a participant. Instead of feeling fully engaged and focused on listening and showing care, I find myself expending significant mental energy to fight the pain I’ve taken on by imagining I’m them and pretending I’m completely physically fine as I should be. It’s distracting and frustrating; it’s already hard for me to understand language and communicate socially, so the last thing I need is additional roadblocks. This “physical mirroring” happens to me most often with people I know and care about, but also sometimes with characters on TV or in books, especially with animals and children.

This weird empathetic phenomenon can even extend to inanimate objects. When I see things that look like they should be alive, I panic when they look trapped or damaged. One of my favorite little annual traditions when I lived in New York City was browsing the Christmas craft village at Columbus Circle: a bevy of unique artisans displaying their products in rows and rows of tents. I am obsessed with lions and I went with mom my last year in NYC and we bought this stuffed aromatherapy lion who had a pouch for a microwaveable scented heart that was supposed to aid relaxation with a calming lavender aroma. Well, the woman selling the lion tried to remove him from the plastic packaging he was in. His head was out but his body was ensnared in a flimsy clear plastic box to help display him. She started wrestling to get him out, holding him by the head to pull his body through the neck hole, and I had a MELT down. I totally freaked out, crying and crying, telling my mom he was hurting. My own neck started feeling strangled and I felt the weight and pressure of a confining enclosure around my limbs. It was real and it was admittedly embarrassing: a 26-year-old in a puddle of tears and a coughing fit, yelling “don’t hurt him!” over a stuffed toy. Passersby most likely misinterpreted my behavior to be a grown adult throwing a toddler’s temper tantrum over my mom saying “no.” I could feel the rise of body heat that comes with shame as it battled my compassion for the lion’s painless pain; after all, I’m fully cognizant of societal norms for adult behavior and I was violating all of them (I’m also aware that a stuffed animal is not actually in pain). Mom had to interpret through my halted gasps and tears that yes, we wanted the lion, but no, please do not continue to remove him from the box for our inspection; he looked just great. I don’t think it was a matter of too many read-throughs of Corduroy as a kid, either. It’s just the way I’ve always been and I can recall many similar incidents.

What I’m trying to say is: challenge and question stereotypes, and operate from a place of curiosity and compassion when you encounter something you don’t understand or that contradicts your previously established thinking. Don’t assume that someone is a certain way or doing a certain thing because they are “autistic” (or any other diagnosis, race, religion, or any other categorization). Many disabilities are invisible, but everyone has a story and everyone, for the most part, is doing their best. Don’t assume autistic people don’t care about your feelings or thoughts; don’t misinterpret their responses as a lack of compassion or inability to empathize. Like all groups of people, we are all different and some of us absolutely care, more than you could know. We just may lack the ability to communicate or demonstrate that compassion in the “normal” way, or we may be caring “too much” and don’t want to overshadow your needs.

Autism, like all the labels I carry, does not come with a uniform. We don’t all look, think, feel, or act the same. We are like you and very different from you. Many of us, like many of you, are looking for connection, compassion, patience, and understanding. When in doubt about our (or anyone’s) intentions or behavior, just ask. After all, isn’t it interesting to learn about someone else’s world experience? Don’t let “differentness” or confusion prevent you from connecting. Let those with differences into your world and shatter whatever stereotypes you may consciously and unconsciously hold; let us be missionaries of love and understanding, students of human nature and of each other.

Reframing

One of my primary goals and purposes for this blog is to establish the discipline of writing somewhat frequently. I have left the “guidelines” for myself very loose and broad so as not to constrain myself unnecessarily. I don’t have a particular agenda or “approved topics.” What I have found over the years is that through the process of writing, my thoughts and emotions become clearer to me and I can reflect on things more productively and from a more informed and self-aware place. There are almost always quite a few things going on in my brain simultaneously and writing has proven to be a useful vehicle to sort and understand these thoughts.

The following is also an example of something I am trying to task myself with through this practice. Yesterday morning, I wrote the first part about the sensory challenges with snow and my resultant hatred for it. After getting my ideas down on “paper” (read: cellphone screen at 3:30am), I left it at that. Twenty-four hours later, I find that I have a more positive spin on it and I’m disgusted by my whining over something so minor in the grand scheme of things. While I’d like to just erase the whole thing and pretend it never happened, the purpose of my blog is not to come across to myself (or anyone who reads it) as someone who always makes lemonade out of lemons, always shows my “good side,” and doesn’t sweat the small stuff. That’s not me in reality and I therefore, that’s not me in the blog. My single blog guideline is to always be authentic. It can be humbling to read some of your thoughts in the not-so-perfect, far-from-golden moments. It also presents the opportunity to reframe the negative mindset and try to re-approach from a new perspective. While this doesn’t always happen, in this particular instance, just letting the thoughts marinate for a day allowed me the pause I needed to grow a tiny bit more in the direction I expect and desire for myself.

 

3/15

I hate snow. In fact, I can’t remember a time that I liked it, even as a little kid. I can’t stand feeling wet and cold and I have Raynaud’s, so my fingers and toes morph into icy, numb, white, functionless digits once temperatures dip below about 50! Suddenly, I can’t manipulate my hands into any useful conformation and I no longer have any proprioception in my feet. I have no idea where they are below my body, which causes trips and faceplants. It’s the other sensory factors that make snow offensive to my system as well. It’s too loud. While rain is too loud as it’s actually precipitating, and it’s too loud as it mixes with tires into some cacophony of road noise, snow also has a loud soundtrack. Walking through snow, like leaves, is too crunchy. Every single step (in a rhythmic, repetitive way) barks uncomfortably loud to me. That’s the thing about repetitive noises. By the nature of being repetitive, the volume is typically constant, but when you have sensory processing issues, each individual occurrence of the sound mounts on the previous one in a summative fashion, crescendoing into an intolerable mess. For this reason, quiet and gentle snow can also be loud. The irony isn’t lost on me. Snow has a hushed whistling noise as it falls. Flakes with more crystallized water are denser and make a shimmering sound. I have to wear ear plugs under headphones but this does nothing to help muffle the sound of my own “warm” coat bending and swishing. Looking at snow hurts my eyes, not in the put-on-sunglasses-to-block-the-glare kind of way, but in the it’s-too-white-my-brain-is-overloaded way. Here in New England, we have a lot of gray winter skies, days where the cloud cover is so thick that you wouldn’t be able to point to the approximate location of the sun unless you know the time. The sky blends with the old piles of snow, which blend with the gray houses. It’s like an artist commissioned to produce an oil pastel rendering of the landscape takes a couple of colors of gray and then artistically swirls them together with his or her fingers into and indiscernible, abstract piece. My brain doesn’t know what to do with so much white, so much sameness, so instead, it renders itself into a knotted headache. I normally thrive when I’m outside. I have compared myself to a plant before. Scientists say that we are 90% bacterial cells and only 10% human cells. I don’t know if it’s because I am vegan or this is more of an any calls on or this is more of an “n=1: I-am-Amber” situation, but I must be the anomaly at 60% bacteria, 38% plant, 2% human. After all, there have been many moments of differentness and loneliness where I wonder if I am even human at all!

Anyway, being outside recharges my battery. Although I’m not convinced I have actual chloroplasts, perhaps my mitochondria have learned to photosynthesize, as I am confident that my body derives energy from the Sun. I have to consciously pull myself inside to get things done. The winter is a different story. The snow surrounds me like a suffocating blanket. A heaviness sets in as I clomp and stomp in noisy boots down the slippery street, eagerly awaiting the end of the walk. When I do get back inside and remove all my wet and cold layers, my skin hurts from the feeling of the materials, my ears are throbbing like I went to a rock concert, and my eyes ache. I have to decompress from the decompressing walk.

 

3/16

Snow isn’t all bad. As Kevin O’Leary from ABC’s Shark Tank (or the superior Canadian Dragon’s Den) would say, it’s really “a nothing burger” in the grand scheme of things, even in the tiny scheme of just my own life. I, and everyone else, has far more serious problems. I can’t control how snow offends my physical body with SPD, I can control my reaction to it. I can choose to not let it bother me so much and to recognize some of its “beauty.” Although I find the individual flakes somewhat magical, and I enjoy studying the for the fleeting moments they persist inside under my microscope, I still don’t find the snow in aggregate to be “beautiful.” People around me say, “Wow, doesn’t it look so beautiful with all the snow today?” I just think to myself, is it my eyes? My different brain? I think it looks so ugly!

So, clearly, I have a long way to go in terms of seeing its beauty at face value but I do find some of snow’s dull grayness has been painted over into a silver lining. I got to spend more time with Ben and any extra time with him is blessing I want to recognize and not take for granted. And hey, we are past the Ides of March. This will melt. My headache will subside. Spring will come.

 

Gradual Germination

 I have a lot of difficulty sleeping. It’s never easy to fall asleep and staying asleep is a nightmare (pun intended), as I am plagued with terribly violent dreams from my PTSD. My doctor has also told me that people on the spectrum often have symptoms of insomnia because of the sensory problems as well as from disruptions in melatonin and one’s circadian rhythm.

Sensory processing problems, for me at least, do seem to peak at nighttime. I think this is largely because they tend to build over the course of the day, like a crescendo in a musical piece that finally breaks into the final cord (or some sort of sensory overload meltdown) at night. I end the vast majority of my days with a terrible headache. My tolerance for sensory stimuli is completely exhausted by 5:00pm. Even a tiny sound—a gust of wind at the window, breathing, my own audible heartbeat against the mattress—drives me bananas. These sounds amplify with each passing second. An uneven whir of the fan (the infamous “pulsing” as it’s known in our home) is my nemesis, its rhythm paving paths of irritation on my cortex. I hate the slightest flicker of light; my poor husband fumbles around in the dark trying to get things. Even his cellphone glow (and he has the old, pre-smartphone type with a tiny screen!) bothers me.  My skin is the worst offender. I won’t even get into that right now because my intention for this post is rapidly getting buried among my sensory complaints!

Needless to say, I employ a strategically designed, carefully rehearsed sleep routine every single night, with the goal of “optimizing sleep hygiene” for better rest. Still, it’s far from good sleep and even further from flawless, which is why I find myself up every morning between 2:40 and 3:40am with a mind that is ready to start the day. As for my body, sometimes it leads the charge and is raring to go, while other times it feels as it should at 2:40am: like cement has encased it.

The other morning, I came down to find the flower pictured in this post in its full blooming glory. The bulb was gifted to me by my mother-in-law for Christmas. While I love flowers, plants, trees, and gardening, I am quite far from having that coveted “green thumb.” Historically, it seems like all my stuff initially grows and then, suddenly, completely succumbs to some sort of dramatic death. (To be fair, that was usually in the mouth of our curious Siamese cat growing up, who seemed to have a constant hankering for my “experiments” growing beans, seeds, and even moldy bread for a Girl Scout badge!)

Anyway, I stuck the bulb in the little pot, plunged it in the provided soil cake, watered it once, and put it on the shelf behind the TV. Oh, but she grew!

Without water for 9 weeks (only the initial wetting of the soil cake), without adequate light, without the TLC my plant deserved, she blossomed. My point in sharing this seemingly boring story is to make an analogy. Even though it’s hardly debatable that I deprived my plant from the things it needed, it survived. It thrived, in fact! The plant had everything it needed inside of its cells. It grew strong roots that are wildly trying to escape their plastic cage; it grew a tall, thick, luscious stem with healthy leaves; and deep vibrant red flowers with silky petals. Had I provided more water and light, I imagine it may have been an easier journey towards maturation, and perhaps today’s growth state would have been reached sooner. However, for nine quiet weeks, my plant used its own resources to figure out how to not only survive, but to thrive and express its beauty. We are much the same way. All of us have an incredible internal strength, a resilience to grow and succeed even if the stakes are against us, even when society, science, health, etc. appear unfavorable for us to prevail. Much like the plant, while there may be an optimal environment or helpful constituents for our survival, we carry within the knowledge, the power, the awareness of our needs, and the drive to grow into strong individuals.

Sometimes situations don’t feel fair. We look to blame luck, “God,” society, etc., and frankly, I think a lot of situations in our world aren’t fair (too many to name), but my hope is that we can all be like my plant, able to persist, so that someday, when it’s least expected, there is something beautiful that we are quietly (or boldly) projecting and breathing into the spaces around us. While we toil away and face challenges and pain, we are laying each strong cell in a calculated and purposeful arrangement, ripe with fortitude and care, into a structure—a life—that has meaning and value.

 

 

Oh, and I do plan to water this plant! Just because she can survive on her own, doesn’t mean she should have to. Be someone’s light and water: loving and supporting someone is never the wrong choice.