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This morning my partner dropped me off at my favorite coffee shop to work. My mistake was a small one - my noise-cancelling headphones were tucked in my bag, and I wanted to find my seat and get settled before digging them out and connecting them to my preferred Spotify Rain Sounds track.
The coffee shop was very busy. This shouldn't be a surprise to me - the owners are lovely, the staff is friendly and remembers my name and my drink, and the coffee is fabulous. But news has gotten out about how good they are and this morning it was absolutely full to bursting.
Entering the coffee shop felt like walking into a wall of sound. Noise feels like a physical assault at times, as if someone is grabbing me by the hair and hitting me in the face over and over. My heart rate jumps, my thoughts start to tumble into one another, sometimes my visions blurs. A sense of desperation and panic sets in quickly as I know I only have a couple of minutes - maybe less - before everything starts to fall apart
But still, my headphones were in my bag, and I needed to secure a seat before ordering as I couldn't leave until my partner returned several hours later. I found a seat, dug my headphones out, put them on as quickly as I could, and turned up the rain soundtrack to a ridiculously loud level to block out the conversations. It hurt to have the rain sounds up that loud, too, but it hurt less than the cacophony of different conversations.
When I got to the counter, I tried to order - lifted my headphones partly off one ear - but my words just wouldn't come. I tried once, twice... I knew they weren't coming, and the noise hurt so badly I returned the headphones to their proper place to block out as much noise as possible. I'm sure the staff were confused, as that's never happened to me here before. I tried to indicate I needed a piece of paper but the paper I touched had the wifi code on it, so they thought I was asking about the wifi. I pulled out my phone to type in the words but they knew my usual order, asked me about it - for better or worse, I can still hear even with the headphones and rain sounds - and I was able to nod.
When I got to the counter, I tried to order - lifted my headphones partly off one ear - but my words just wouldn't come. I tried once, twice... I knew they weren't coming, and the noise hurt so badly I returned the headphones to their proper place to block out as much noise as possible.
I got back to my seat and put my head in my hands for a few minutes, trying to block out as much stimuli as I could. I took a medication that lowers my blood pressure and reduces anxiety. I sat very still as things started to move from an endless array of individual sounds and sights into sensory input that had some coherence to it.
A few minutes later I had mostly recovered; I could answer the person across from me when she asked if I would watch her stuff, and could smile again, and looked like I was somewhat okay. Inside, I felt embarrassed, wanted to cry, and really, really wanted to go home and curl up in my dark bedroom.
These situations have, thankfully, decreased a lot over the past few years. In the past, I didn't feel okay wearing noise-cancelling headphones, or choosing places that were better for my well being, or saying I couldn't go to places that were too loud. In fact, sometimes I didn't even recognize that what was happening was related to sensory input nor did I have any idea of how to help myself.
Past Experiences
There's a family story that indicates my distress at loud noises started very young. My dad's dad was a naturally gregarious, loud person. He'd been in the Navy, working initially in the boiler room on ships and later repairing airplanes that landed on the ship. By the time I was born, his naturally loud voice had become louder due to damage to his hearing. Every time he walked in the room I'd start crying, until my grandma finally told him "Frank, can't you see she's scared of you cause you're so loud?" My grandpa lowered his voice around me from that day forward.
In school, I remember cringing at school assemblies, at car alarms, at dogs barking. My upstairs neighbor would play his music and the bass would come through the floor. I would end up completely non-functional, crying, overwhelmed. Sometimes I would try to go to his door to plead with him to turn the music down - I don't think many autistic kids gravitate towards intentional social conflict with strangers, but I was so desperate that I didn't know what else to do.
Later, in college, I remember bursting out into tears waiting for the bus. The traffic, the conversations around me, and finally a blaring car alarm sent my nervous system over the edge. I knew something was different about me, as I looked around and everyone else was just chatting and acting like nothing was going on.
The worst situation would be intense noise and other stimuli while I was navigating a social situation. I went with my partner to an event - there were probably 60 people in the house and backyard. I remember freezing up as I went inside, trying to figure out what I was supposed to do. Rules about who to greet and how to greet them were running through my head; food was cooking and there were smells that were unfamiliar to me; there were dozens of conversations happening; it was summer and very hot. Someone snapped a picture of the event and I saw it later; my face was totally, completely blank. No expression whatsoever.
Rules about who to greet and how to greet them were running through my head; food was cooking and there were smells that were unfamiliar to me; there were dozens of conversations happening; it was summer and very hot. Someone snapped a picture of the event and I saw it later; my face was totally, completely blank. No expression whatsoever.
My partner could tell I was in distress, and was also confused herself about why I wasn't interacting with people. She started asking me what I needed, if she could get me something to eat, some water, or something else... I couldn't even make sense of her words. I could hear them but they sounded like noise, and had no meaning. I finally grasped that she was trying to bring me something, which I knew would be even more to figure out and track, and just said "no!" She looked taken aback and hurt. I felt terrible, knowing I'd done something wrong, but my head felt like it was in a blender and I was trying desperately not to start sobbing. I had no concept of what my face looked like, or my tone, or how to do anything but try to stand next to her and not cry. I didn't know when the event would end, or how to get away. I reverted back to the same coping strategy I used to get through movies: math problems in my head. 2+2=4, 4+4=8, and on and on until I couldn't figure out the answer. Over and over and over in my head, the numbers repeating, I could manage to look only at those numbers and stay frozen upright and a few inches from my partner. I couldn't have told you what was happening around me. If I allowed myself to be present in my environment, everything would have fallen apart and I would have started crying.
In a research lab - ironically, focused on autism and ADHD - I would meet my colleagues in the setup space before data collection began. We'd all be in a small, dark room with recording equipment that looked through a one-way mirror into the data collection room where I'd assess a child for meeting developmental milestones and autism. People would be in and out of the setup space, checking the recording instruments were properly set up, verifying paperwork, confirming we had all the supplies.
I'd feel my mind start to swim and the room start to spin. Slowly, I would begin to freeze physically, and then my mind would go blank. This was absolutely the last thing I needed before delivering multiple assessments from memory. When it got really bad, I would finally go into the hallway and squat down, head in my hands, trying to get everything to stop spinning and to pull my mind back online. I would rock back and forth, repeating the first lines of the assessment instructions over and over in my mind, the same way I'd repeated the math problems at movies, and the way I'd repeated certain prayers as a child. Over and over, the same words, my lips moving silently, rocking in rhythm to the words, my head in my hands to block out the light. Someone rocking and talking to themselves is not what people expect in a researcher.
Of course, no one on my team understood what was happening. It looked like I was just not helping and then behaving strangely. You'd think in an autism lab someone - at least myself - should have recognized what was going on. At that time, even those of us closest to autism often struggled to recognize it in adults.
Over and over, the same words, my lips moving silently, rocking in rhythm to the words, my head in my hands to block out the light...You'd think in an autism lab someone - at least myself - should have recognized what was going on. At that time, even those of us closest to autism often struggled to recognize it in adults.
Reducing Shutdowns
Over time, I've pulled together a small number of tools that allow me to decrease the number of meltdowns and shutdowns I experience.
I put my headphones and sunglasses on before there's a problem (usually!). I seem to have a max amount of sensory input that I can handle before my brain freezes up. Reducing sensory input before it is a problem increases the amount of time I can be out and about.
I moved to a walk-able neighborhood close to my office and limit how much driving I do overall. Driving has always made me feel ill, and I finally realized that it was the amount of stimuli and the speed with which it was coming at me that was the problem. The amount of light changes quickly when driving through a landscape with trees or buildings; this is even worse if there's bright sun out. The car goes from shadow to brightness rapidly and repeatedly. Additionally, the movement increases the amount of data our vestibular sense is processing. Add to that motion sickness and the increased anxiety that comes with that...it's a perfect storm. I walk whenever I can; I walk to my office when possible, but it's a short drive if not; and I wear sunglasses when driving and an eye mask when I'm the passenger. Walk-able neighborhoods are often more expensive, and we've chosen a small apartment in lieu of a larger space in the suburbs.
Driving has always made me feel ill, and I finally realized that it was the amount of stimuli and the speed with which it was coming at me that was the problem. The amount of light changes quickly when driving through a landscape with trees or buildings; this is even worse if there's bright sun out. The car goes from shadow to brightness rapidly and repetedly.
I don't spend time around unkind people. Social interaction and sensory overload make any social event challenging. Dealing with people who are unkind stresses me out even more. In addition, I know that some people are likely to make fun of me for struggling with too much sensory or social stimuli. At a different time in my life I would have just forced myself through that because I thought I had to. At this point, I have given myself the grace to simply choose to not be around people who are not supportive. I have a limited social battery as it is, and I'm going to focus on the interactions that are meaningful and nourishing.
I'm very supportive of my partner spending time with her social circle without me, and I prioritize time with her one-on-one or in a small group. I tell her thank you and am always encouraging when she wants to hang out with people in a setting where I know I'm likely to struggle. I prioritize us hanging out together or having a meal with one or two other people, where there's less input.
I'm very supportive of my partner spending time with her social circle without me... I tell her thank you and am always encouraging when she wants to hang out with people in a setting where I know I'm likely to struggle.
My office and home environment are as calm and soothing as possible. We sometimes talk about the ADHD tax - e.g. buying convenience foods to conserve limited executive function rather than cooking. I think of the priority and expense around maintaining a viable environment as part of the autism tax. In addition to living in a walk-able neighborhood (see above), I also prioritize a place away from a lot of traffic; a place with trees and nature around me; central air so I don't have to deal with the sound of a window air conditioner; plants inside; and cats. Definitely cats. I have sacrificed many times in my life to have a manageable living environment. I prioritize this sort of environment over the ability to take time off, to buy new clothes, and (during college & grad school) sometimes over the ability to buy groceries. Having a safe home base is my number one financial priority.
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