Category: Sensory

25: I have an eating disorder.

Trigger and content warning: eating, food, weight, eating disorder, bingeing, restricting, treatment, recovery.

I have an eating disorder.

It’s taken me a full year to reach a place where I can say that sentence out loud, but now that I have, I feel a tiny piece of its hold on me slowly peeling away. I was diagnosed well over a year ago, but have only started the nitty-gritty of treatment very recently.

So why am I writing about it on my blog?

Well, for one thing, my blog is a place that I can go to write what I’m feeling and it helps me to process things in a constructive way. In a big way, this space has always and will always be for me. A big part of Autistically Alex is unraveling myself and finding out who I am inside. (Alexa, play the Mulan soundtrack!)

But I also want to be open about it because if it weren’t for people in my life being open about their own struggles, treatments, and roads to recovery (including potholes along the way), I never would have been brave enough to seek help. So another massive reason I am being open about this topic is in order to reach out to others to say, “You are not alone.”

The last big reason I am writing about my disordered eating on Autistically Alex is that it is not unrelated to being Autistic. I began subconsciously, (then more consciously, but to my deep shame and suffering) using food, bingeing, restricting, and overall disordered eating to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life.

Bingeing has become a type of self-harm stim to me. Restricting has become a way to control at least something in my life when I so frequently am overwhelmed by the world around me, not to mention my various health issues and disabilities. But these are not healthy or productive ways to cope. The fact that I can see that now is not a small baby step, but a giant, giant leap toward my long marathon run toward recovery.

One reason I avoided seeking help for so long is the uncanny ability eating disorders have to convince you that they are no big deal. Cycles of denial and acceptance are pretty much guaranteed companions during anyone’s treatment and recovery. I have no doubts that I will struggle back and forth for months–and probably years–to come, but now that I know that and accept that, it makes it easier to cope.

So how did I decide I really did have a problem I needed to address?

I’ve known for a long time, but the final tipping point was a journal assignment my therapist gave to me. The prompt was, “What is your relationship with food like? Write a letter as if it were a real person.” The two images below are my letter to food.

(If you are using a screen reader, please click the images. Alt-text is attached.)
An image of a purple notebook page with text on it. The date reads January 1, 2019. Above the date is a branch with red buds. Text reads, "Dear Food, We need to talk. My relationship with you has been unhealthy for 18 years. It's true that I can't live without you, but sometimes you make me feel like I can't live with you either. You are nourishment, energy, life, necessity. You are addictive, controlling, an unhealthy coping mechanism. I need you. I love you. I hate you. I hate that I need you. You provide me with escape... and yet I can't seem to escape you. The solace you provide is temporary and leaves behind regret, frustration, and a shame.
The second page of the letter reads, "Where you soothe, you also blister. You are a gulp of cool water laced with poison. We need to talk. We have 28 years to evaluate--18 of them troubled. You know I won't ever leave you, but things between us are about to change. I can't leave, but I can loosen your hold on me. I will no longer use you as a crutch that feeds me lies and self-hate. We need to talk. Sara." Beside Sara's name is a graphic of a pen. Under her name is a branch with blossoming red flowers.

Was I shocked by what I wrote? Extremely. What started out as a seemingly-silly therapy homework assignment that I was doing only grudgingly soon pulled emotions up from deep within me as the words cascaded onto the page. What I expected to be a few lines or bullet points in my journal turned into a chilling look at how I really felt. It captured the push-and-pull, back-and-forth, ebb-and-flow love/hate relationship that I’ve been running from since I was 10.

But, like I said: Denial and acceptance are at constant war within me. The next day, I was back to the complacent “I’m fine” attitude. But this time… I had something to look back on. I looked at that letter and felt those same feelings rising up in me again. And suddenly… I couldn’t turn back. I couldn’t go back to believing everything was fine…

But more importantly, I didn’t want to.

So what now?

Well, I’m diving in to treatment head-first with my therapist, continuing to journal (no matter how silly a prompt seems), talking with my loved ones who have eating disorders, doing seemingly small things like asking doctors not to tell me my weight, and reading lots.

I’m cycling back and forth between two books:

The simple yellow cover of Body Respect: What conventional health books get wrong, leave out, and just plain fail to understand about weight. By Linda Bacon and Lucy Aphramor.

1) Body Respect by Linda Bacon, PhD and Lucy Aphramor, PhD and RD (Amazon link here).

The pretty yet simple white cover of Life Without Ed: How one woman declared independence from her eating disorder and how you can too. By Jenni Schaefer.

2) The 10th anniversary edition of Life Without Ed by Jenni Shaefer (Amazon link here).

Cycling between the two has been invaluable to me so far. Body Respect challenges our views of weight, fatness, calorie counting, dieting and more, while Life Without Ed shows me that I am not alone, shows me recovery is possible, and teaches me very practical techniques that I can use.

Getting to Know the Enemy

One of the most important things I have learned from Life Without Ed so far is the concept of naming my eating disorder. By doing this, I can begin to separate out thoughts and impulses that are genuinely mine and which are from the eating disordered part of my brain. It also gives me something to roll my eyes at and tell to go away!

One exercise I did once I named my disorder was to write down all the things it says to me. Once again, what I thought was kind of a silly activity turned into me easily writing a page and a half of terrible things that it says to me–and has done for 18 years. That was another eye-opening moment for me and one that will stick with me throughout treatment and well past recovery.

So there you have it. I have an eating disorder.

But I’m not terrified like I have been for years. I feel anxious. Sometimes I feel powerless. Sometimes I feel like I can’t do it. Occasionally I still feel denial. But now I know how to recognize these feelings and thoughts as products of my eating disorder, not myself.

I have an eating disorder… and I’m going to kick its butt.

A meme with a photograph of a sunny path through the woods. Text reads, "I have an eating disorder. I began subconsciously using food to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life. As I start down my long path to recovery, I am reaching out to others to say "You are not alone."I have an eating disorder...and I'm going to kick its butt."

[Featured image, image description: A photograph of a sunny path in the woods with shadows from the trees stretching across it. Text reads “Starting Down My Path to Recovery. Seeking Sara.”]

How to Be an Accessibility Ally: Screen Readers

When I first started blogging, I had no idea that there were some simple steps I could take to make my posts much more accessible to my audience. I began adding descriptions to images on WordPress and Twitter and found that it’s really simple. I (naively) figured that most sites must be describing images that way. Then I met my friend Elyana who helped me test run some Voiceover software on my phone and I became painfully aware of how inaccessible most images are on the web.

Elyana has been gracious enough to teach me some basics about creating a more accessible space for visually-impaired and blind people on the internet, and she agreed to do an interview on the subject. I hope that you will take her words to heart and follow some easy steps that make the difference between accessible content and inaccessible content.

Following the interview are some how to visual guides for sighted allies who want to learn how to make their content more accessible. Happy reading!

Accessibility Interview: Elyana Ren

1) What is a screenreader and how does it work?

Elyana: Screen readers give blind and visually-impaired people access to computers, phones, and smart devices. A screen reader is a software program that interfaces with an operating system to render the visual elements (i.e. what’s on screen) into text that is ‘read’ out by a synthesized voice or which can be read on a connected braille display. The screen reader user then uses the keyboard to interact with those elements.

I would like to take this time to point out that, while most screen reader users are blind or deaf-blind, this does not mean that some don’t navigate by using residual vision (with or without magnification software.) Likewise, most screen reader users just use speech to navigate, but many use speech and braille or only braille, in the case of some deaf-blind people. But the concept is still the same: screen readers take what is on screen and present it to the user in a format that is accessible to them.

Note: The following video was created by Sara to give an example of how a screen reader might read text and image descriptions. It is a highly abridged version of what most screen readers can do.

To navigate around a website, for example, the screen reader relies on the HTML code of the page to tell it how to ‘speak’ the elements to the user. Websites tag multi-level headings, links, form fields, buttons, images, and other elements, and screen readers can read that data to the user. If, for example, I were on the Seeking Sara blog, I could hit the letter H and my screen reader will jump from heading to heading, allowing me to scroll through blog titles in the same way someone would scan visually. Once I’ve found the title I was looking for, I can simply use a keystroke to click on it and then read it by either using the arrow keys (like one would in a word document) or using another command to jump from paragraph to paragraph.

The same concept is applicable to screen readers on smartphones and tablets, such as Voiceover for iOS. Basically, when a screen reader is enable on a smartphone, it adds a sort of overlay atop of what is shown on screen so that the user can hear what is under their finger before they click on it. Then, like with letter navigation on the computer, we can use gestures to have the screen reader read out different things, such as headings, words, or characters.

2) What kind of obstacles do you encounter on the internet? What sites are generally inaccessible for you?

Elyana: As mentioned above, screen readers rely on the underlying HTML code of websites to communicate to the user what is on screen so that  the user is able to interact with that content. One of the biggest barriers to accessibility is when things are improperly labeled or not labeled at all. For instance, some sites are completely graphically-driven, meaning that all my screen reader will see and read back to me is a giant image — even if there is text visually on screen. I don’t know enough about web coding to provide exact details on how to fix this, but I have seen enough wonderfully accessible sites to know that it is completely doable.

Another thing that makes navigating sites a little more difficult is videos that autoplay. Not only is it distracting, but screen reader users usually rely on speech output, so it is very difficult to do anything if all I can hear is an ad for the latest game or something. Some web browsers do make it so that you can do a keystroke and it will mute the active tab, but not all of them (as far as I know).

3) What are some of the most accessible sites for you? What do they do that makes the difference for you?

Elyana: The best sites are designed inclusively. This means that they take the time to make sure that everything on their site is accessible not only to screen readers, but also to people with other accessibility needs. This means that everything behind the scenes is properly labeled but also that visual elements, like graphics, background and text contrast, text size, and font choice are also taken into consideration.

4) What is alt-text? What is an image description?

Elyana: Essentially, alt text is a tag someone can add to an image that will make it accessible. I hesitate to call it a caption, because I feel like the trend nowadays is to use captions to comment on a photo rather than describe it. So this is where an image description comes into play. An image description, which is basically what it sounds like: text that describes an image for blind and visually-impaired people, is placed in the alt text field of an image in the HTML code of a website to tell a screen reader to read the description aloud. Otherwise, a screen reader would just read the metadata (i.e. time stamp/file name) of a photo, or simply read it as “image,” neither of which gives us access to said photo.

5) What makes a good image description?

If I’m being honest, image descriptions are so under-used that I get excited when I see any described photo; however, there are certain elements that make a description more effective than others. Some descriptions I have seen are as brief and to the point as “A girl collecting leaves in a wagon,” providing enough of an overview that I can synthesize it with whatever post it is attached to. Some can be longer, such as “A young blonde girl in brightly colored clothing collecting autumn leaves in her shiny red wagon”, which gives me a better understanding of the perspective or mood of the photo. So for me, a good description does not depend upon length as much as it does on helping me understand the aim of the image.

The image in Elyana's example. A young blonde girl in brightly colored clothing collecting autumn leaves in her shiny red wagon.

6) Some people may be hesitant to use certain things in descriptions, such as color. Should people worry about those things? Is there anything you personally don’t want to be in a description?

I can’t speak for everyone, but I don’t want people to feel hesitant or worried about using language that talks about visual things around me — not just in image descriptions but in everyday conversation. For me, color is just another tool I have in my vocabulary of descriptors. So I guess the short answer is: I can’t think of anything I don’t want in a description because anything that can go in a description is just providing me with a deeper understanding of the image.

7) What are some other ways people can make the internet more accessible for visually-impaired and Blind people?

I think one of the things people might not realize is that not all images that are just blocks of text on a colored background are not necessarily accessible to us. There are apps that strip text from pictures, and Facebook has added a layer of accessibility to help parse some memes, but most of them are just an image that screen readers can’t read. One of things that would help is adding a description to those types of images. It can be as simple as typing the text in the body of the post or, in the case of Facebook, pinning a comment to the post in question.

Another thing that is helpful is to capitalize the first letter of every word in a hashtag because screen readers will read each word separately instead of trying to string together all the letters into a mush of phonemes. For example: when my screen reader sees: #allforoneandoneforall” it tries to put all of the vowels together, resulting in me hearing: “alforowndeenodanaforal.” But when the hashtag is written like this: “#AllForOneAndOneForAll,” my screen reader knows to separate out the words, resulting in me hearing “all for one and one for all” as intended.

Final comments from Prismatic:

The last thing I’d like to say is that I appreciate all of Sara’s work to make her content more screen-reader-friendly. I can’t speak for other access needs, or any other blind person, but I am very grateful for creators who go out of their way to ask their audience what they need to be able to participate in their content.

Finally, thank you all for reading this post! I know that it can be a hard thing to remember sometimes, or maybe a hard thing to go back and fix, but really, I just ask that you try to use some of these tips moving forward. I am open for questions or discussion and am happy to provide feedback on your content if you want. I can also provide funny screen reader fails, because they can be pretty awesome!


ABOUT ELYANA

Elyana and her yellow lab guide dog. Yana is laughing with joy as her dog turns to lick her face. Yana wears a green Hufflepuff sweater and a plaid hat.

Elyana Ren is a proud Hufflepuff and unquenchable bookworm. She grew up in the middle of the Pacific, but found herself after moving to the Pacific Northwest. Her works feature the authentic experience of being disabled, neurodivergent, and queer. When she isn’t writing, she uses the creative arts to empower others to trust and love their own voice. Elyana can be found on Twitter @aprismuncovered and on www.aprismuncovered.wordpress.com. If she isn’t there, she is probably in the company of a few good books, her guide dog, and her collection of plushies. Actually, always check there first.

Below are some visual guides created to help sighted people turn on and use image description options.

How To Add Image Descriptions on WordPress

A visual guide detailing how to add alt image text to images on WordPress.
EDIT: YOU CAN ADD ALT TEXT TO FEATURED IMAGES! Go to EDIT–>Featured Image (on the righthand side of the screen)–> After you assign a featured image, hover over the pencil icon to edit–> Add in description in Alt Text box!

How To Add Image Descriptions on Twitter via Computer or Phone

For Twitter’s explanation (without image guide) including Android instructions: https://help.twitter.com/en/using-twitter/picture-descriptions

A visual guide detailing how to add alt image text to images on Twitter from a computer.

 

A visual guide detailing how to add alt image text to images on Twitter from a computer.

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.

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….”

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.]

 

7: Japan—My Autistic Haven

I first went to Japan when I was 12 years old for a two week study abroad trip through my middle school. I loved it and continued to study Japanese culture when I returned to the US. I chose my university for its famous Japanese Language and East Asian Studies programs, participated in a month-long field study in Tokyo and Kyoto, spent my junior year at Kansai Gaidai University in Hirakata City, graduated with Japanese and East Asian majors, and finally worked in Japan for three years as an Assistant Language Teacher (ALT). Japan is one of my special interests!

There are so many reasons why I keep gravitating toward studying about, living and working in, and obsessing about Japan!

  1. The Japanese language–hierarchy: A large part of the Japanese language is made up of set rules and patterns based on who you are talking to. If you know your place in the hierarchy, you know how to talk to basically anyone. Don’t know if you are above or below someone in hierarchy? Just use the general polite form of language! It takes away so much guess work.
  2. The Japanese language–set phrases and ritual: There are many instances in Japanese when a formal, ritualized, or set phrase is used and you know exactly what you’re expected to say in return. There is no guess work or fumbling for a response. You just know exactly what to say without thought. For example, when entering or leaving a home or work environment, there are set phrases you say and set phrases others will respond with. When you say these phrases, you know exactly what the response will be (and vice versa) and that’s incredibly comforting.
  3. There are more clear social and cultural rules: It really helps that I’ve studied Japanese culture for years both on my own, while in Japan, and at university. It may have been different for me if I had grown up in Japan, but being able to study about a society has made some aspects of fitting in much easier.
  4. Being a foreigner: Being a foreigner in Japan affords great privileges and allowances socially. In a lot of instances, any effort made as a foreigner is an unexpected surprise which is praised. Efforts to behave culturally appropriately in Japan will be often be met with exclamations of surprise and delight while social missteps are more often seen as an unfortunate byproduct of being foreign.
  5. If I don’t pass as Neurotypical, no one suspects: Along the same lines, it’s much more likely that someone would assume my quirkiness or awkwardness is due to being a foreigner! Any social misstep or awkwardness is almost always attributed to just being a foreigner and coming from a different culture.
  6. Eye contact is not nearly as valued: Prolonged eye contact can actually be seen as very rude in Japan! Along with this, handshakes and hugs are not the norm, so it’s much more sensory friendly. People bow to one another and there are even rules about how low to bow depending on your hierarchical status.
  7. Less perfume/cologne bathers: People in general just don’t overdo wearing scents. That’s not to say that some people don’t, but–compared to the US–they are few and far between. This means a much more friendly sensory environment for me and less sensory overload.

When I am in Japan, I know more-or-less what is expected of me and what to expect from others. When in America? All bets are off. That’s not to say that everything in Japan is completely wonderful for me and everything in America is terrible. But I certainly have a lot less social anxiety in Japan and it tends to be more sensory friendly.

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.

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:

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