bookmark_borderSensory sensitivities aren’t as bad when you don’t have to hide them

Yesterday I was walking to the train station after work, and I was in agony. As an autistic person, I have severe sensory sensitivity to wind. As I speed-walked down the sidewalks and ran across the streets, trying to get to the station as quickly as possible, air blasted brutally and relentlessly in my face, freezing my cheeks and nose and causing excruciating pain throughout my entire body. 

As I waited for the train, exhausted and trying to recover from the assault, I dreaded the walk at the other end of the commute, from the train station near my house, to my house itself. This walk is more than twice as long as the one from work to the station, and there was no reason to believe the wind would be any less vicious. Because I had gotten out of work a few minutes late, there was no way I could catch the bus from the station.

After getting off of the train, I took my time securing my hat on my head, putting on my gloves, and making sure my scarf covered as much of my face and neck as possible. By the time I stepped out into the painful conditions, the crowd of people from the train had dispersed. Because there was no one to feel self-conscious in front of, I muttered under my breath as I walked. I complained, sometimes profanely, about how painful and horrible the wind was, about how wrong it was that work got out late and cause me to miss the bus, about how bizarre it was people could walk around and exist in these conditions as if nothing was wrong, and about why the heck humans hadn’t invented a way of preventing such atrocious weather conditions from occurring. 

A remarkable thing happened as I made my angry way through the streets: the wind wasn’t as bad as I thought it would be.

When the ice-cold blasts of air started to increase in frequency and severity, I turned around and walked backwards. That way, the back of my head sustained the brunt of the assault, as opposed to the bare skin of my face. This slowed down my progress considerably, and I must have looked like a complete lunatic to anyone who happened to be observing from the houses that lined the streets, or the cars that occasionally passed by.

But miraculously, it worked. Freed from the obligation to act in a socially acceptable manner, I was able to take the measures that I needed to take in order to minimize the pain. Wearing the warmest clothing possible, walking as quickly as possible, walking backwards when the direction of the wind demanded it, and expressing my anger and pain, all combined to reduce the amount of suffering that I was subjected to.

My past self, if faced with this same situation, might have forced herself to walk quietly and forward-facing at all times, perhaps even with a smile on her face. And then, upon arriving home, she would probably have commenced screaming, kicking furniture, and throwing things immediately after stepping through the door. But because I gave myself permission to do what my body needed, regardless of how it looked to other people, I was able to survive the journey home with a minimum of suffering. 

In the autistic community, the act of forcing oneself to appear socially acceptable is known as masking. This is something that I’ve done to a very high degree for almost my entire life. When I mask, I force myself to hide my sensory sensitivities and other autistic traits. I pretend that I am okay when I am not, I pretend that I am happy when I am miserable, and I pretend to like things that I don’t. I force myself to behave the way that “normal” people behave, even when it goes against my preferences, needs, and true nature.

I wonder how much of autistic people’s suffering is caused by sensory issues themselves, versus how much of our suffering is caused by depriving ourselves of the things that we need to manage the sensory issues, out of the belief that these things would look “weird.” Is it autism itself that makes life difficult, or is it masking?

To a large degree, I think the answer is the latter. Masking is something that I am trying to do less of. I am no longer willing to deprive myself of the things that I need, and subject myself to needless suffering, for the sake of looking “normal.”

bookmark_borderThe worst sensory experience of my life

On Saturday night, I endured the worst sensory experience of my life.

I was walking to the train station from work, and out of nowhere I was attacked by the worst wind imaginable. Wind so horrendous that I don’t even think the word “wind” is adequate to characterize it. It attacked me with a viciousness and brutality so severe that it felt like sharp claws ripping and tearing at my clothing and skin. It felt like being stabbed by a million icy cold knives, my skin shredded to pieces. I was in such atrocious pain that I was literally screaming in agony while I sprinted down the block to the train station. (There were a few people out and about who almost certainly thought I was insane; I’m lucky that no one called the cops.)

It was torture.

In my opinion, weather is simply not supposed to be the way it was during that torturous walk. Obviously, part of existing on earth is the fact that on different days, you get different types of weather. There are warm days, cold days, sunny days, cloudy days, rainy days, and, yes, windy days. But this was not merely a windy day. This was an abomination. Air is simply not supposed to act like this.

The wind was so bad, in fact, that even inside the train station, even after I had angrily stomped up the stairs to the second level of the station, ice cold wind was still blowing through the train station.

The experience was so horrific that even hours after returning home, I could not recover. No amount of being inside a warm, wind-free house, or drinking hot tea, could help me to feel better. The only thing I wanted was to scream and scream and scream at the top of my lungs, and to smash every building on that evil block into pieces until all of the apartments and all of the storefronts were reduced to a heap of rubble.

The experience itself lasted only a minute or so, because I was only a block away from the train station when I was assaulted by the abominable wind, but I could not get it out of my brain. I re-experienced it again and again while I was lying in bed, trying futilely to fall asleep. The sensation of the wind ripping and tearing at my face and neck, and buffeting and battering my body, is permanently etched into my consciousness.

As an autistic person, sensory sensitivities (finding certain sensory experiences unpleasant, distressing, and even painful, which most people are not bothered by) are a big part of my life.

As you may have guessed, wind is my biggest sensory sensitivity. Noise is one as well, particularly sudden noises that come out of nowhere. Light is another, particularly when it is at the wrong angle, shining directly into my eyes.

Obviously, although most people would likely not enjoy spending time in such strong wind, my autism is why the wind felt so incredibly distressing and painful to me.

I am certain that if other people experienced what I did during that horrible walk, avoiding creating the conditions that cause such strong gusts of wind would be the number one priority of every city and town government, every architectural firm, and every civil engineering department. If other people experienced what I did, they would do whatever it took to prevent such an experience from happening to another person ever again. Even if that meant demolishing buildings and rebuilding them in a different place. Even if it meant razing entire city blocks and entire neighborhoods.

But other people do not experience what I do.

So I’ve been thinking about steps that I could take to decrease the odds of having a repeat of this experience. As I’ve embraced my autistic identity more and more, I’ve been thinking about ways to accommodate my sensory sensitivities, ways to avoid being subjected to the things that cause me discomfort and distress, ways to hopefully allow me to have a better quality of life.

The autistic community is pretty much in agreement that sensory sensitivities do not diminish with repeated exposure. Autistic people can’t “get used to” the things that bother us, or learn to tolerate them over time. If anything, it’s the opposite: the more we are exposed to something that bothers our sensory sensitivities, the more it bothers us.

Wind is a difficult thing to avoid, however.

It is impossible to predict with any degree of certainty whether any particular street or block will be particularly windy at any particular time. Yes, some streets are more predisposed to wind than others, but on the Saturday night from hell, a street that has frequently had terrible wind in the past was fine, while the abomination happened on a street that has never been a problem, wind-wise, before. I could choose a route to the train station that avoids both of these streets, but there’s no guarantee that a different street won’t randomly happen to have terrible wind.

Because wind is just that – random. I’m sure there are scientific laws that explain why some places tend to be more windy than others (I’m not a scientist, so I don’t know the details), but any prediction is inexact and uncertain. I check my weather app each morning, but it is an imprecise guide. There have been days when the app shows a wind warning and/or an icon signifying strong wind, but once outside I don’t find the wind to be particularly bad. Conversely, there have also been days with no wind warning and no icon, on which I nonetheless find the wind to be absolutely awful.

Clothing such as scarves, down parkas, and hats with ear flaps help, but don’t prevent suffering entirely when the wind is really bad. It’s also not really socially acceptable to wear such clothing in spring, and wind can really bother me in that season as well, even though the temperature is not as cold.

I could take Uber or Lyft to and from work to minimize my amount of walking, but that would be much more expensive than the train, and I also enjoy riding the train much more than I enjoy being in a car one-on-one with another person, with whom I feel obligated to make small talk.

I could buy a car (something that I don’t currently own) and drive everywhere that I need to go as opposed to taking public transportation or walking, but that would be quite expensive as well. Plus, there’d still be a chance of getting attacked by a gust of wind in the parking lot.

The only way to avoid wind entirely is to never leave one’s house, and that is neither a practical option nor a desirable one. I wouldn’t be able to work, for starters, at least not at my current job. Plus, I really enjoy running errands such as going to the post office, bank, convenience store, and grocery store. I also enjoy walking around in both natural and urban environments and taking photos of the things that I see. And walking is good exercise, which is valuable as well.

Having said all of that, I am trying to manage risks wisely and minimize exposure to the things that bother my sensory sensitivities when it makes sense to do so.

Yesterday, for example, with Saturday’s abomination still fresh in my mind, I decided to take the bus to the downtown area to buy face cream at the drug store, deposit my paycheck, and get a coffee at Dunkin. Normally I would walk, but as I was about to leave my house, I realized that the bus was due to come soon, and I was able to catch it without waiting a long time. The timing of my errands worked out so that I was able to easily take the bus back home as well. All in all, I was able to complete the tasks I needed to do, walk around the downtown and observe all the goings-on there, and snap a few photos of the bright and snowy day, without being subjected to significant wind.

While wind (like noise or light) is impossible to entirely avoid or accurately predict, I am learning that there are measures that I can take to minimize my exposure. Gradually, I am finding ways to enjoy the activities that are important to me without being subjected to unnecessary distress from my sensory environment.