My friend Bridget wasn’t feeling great. She felt off-balance and couldn’t walk and it was making it difficult for her to talk. And then she told me the carpeting made her dizzy. I hadn’t noticed the carpeting, but when she said this to me, I realized the pattern of the carpet was like an op-art nightmare, in sharp contrasting hues, the repetitive pattern was eye-catching and I suddenly wondered how I could have blocked it out. But, you see, I had. The carpet wasn’t a problem until she mentioned it and then I couldn’t not see it. In addition, there was a plexiglass barrier that gave the sensation of being in an infinity pool, without any of the relaxation involved. It was as though the carpeting spilled over the edge and disappeared into an abyss. It was disconcerting and even frightening.
I held out the crook of my arm, the way a blind man in New York City taught me to do, years ago. A stranger, he’d asked if I could help him cross a busy intersection. At the time I was carrying my son in a Kelty pack on my back and had my then infant daughter in a snuggly. When I offered my hand to the man, he told me it was easier for him if I crooked my arm and he then held that, it was more stable, but also gave him the ability to control his own movement more. Bridget took my arm and we were able to make our way to the elevators without mishap.
It was like pain, you don’t realize how awful it is until it’s gone, and then you’re filled with indescribable relief that makes you hyper aware and surprised by just how bad the pain had been. Afterwards you wonder how you managed it. Realizations are like that. Once you have them they’re impossible to undo or un-think or un-feel. This is how it is with autism too.
A few months ago I was waiting for the cashier to ring up my groceries. Suddenly a load bang sounded. Without meaning to I jumped and turned toward the sound. It was another cashier smacking a paper bag open. She was smiling and the cashier next to her did the same thing. Other cashiers began to laugh and followed by banging their bags open. I was furious. The noise felt intolerable. I wondered what I might say to make them stop. I went through various scenarios in my mind, from yelling obscenities, to self-righteous indignation, to calling the manager. And then they stopped. The deafening sound that felt like a physical assault ended and I realized I’d been holding my breath.
As I walked home with my groceries I thought about how angry I’d gotten and how my body froze and then I thought about how awful it would be if I was assaulted, bombarded with intolerable sounds all the time or lighting that had a similar effect and suddenly, very suddenly, I understood something I had not understood before. I understood what people meant when they suggested that sensory issues can affect one’s actions, or as they say when referring to autism – how sensory issues can result in “behaviors”.
Had the banging noise continued in the grocery store I would have said something, and it would not have been kind or thoughtful or restrained. I would have had “behaviors” as a direct result of that awful noise. Had someone told me to calm down I would have been even more furious. My actions would most certainly have been viewed as over reacting or needlessly extreme.
Had I not been present when my friend Bridget told me how awful she felt and that she needed to sit down for a second and then told me why, I would not have noticed the awful carpeting nor would I have understood how the pattern of a carpet could disrupt one’s equilibrium so much so that one might lose the ability to speak. These are the things I am learning. These are the things that make the difference between understanding, and maybe even being able to do something helpful and not.
Yes that is how i feel when someone pops gum or i hear kids scream or smell mint. It is not fun to have your senses assaulted suddenly.
Sending virtual hugs, if helpful, otherwise, thinking hug-like thoughts.
aww thanks :D. Also orange and pink together makes my head feel weird. I already have bizarre sense stuff because of the synesthesia so I smell and taste things that aren’t supposed to have smells and tastes like music, and music has colours to me too so it feeds into the sensory issues sometimes. It can be either really pleasant and awesome when it comes to good music, or sensory hell.
Hotel carpet patterns are often nightmarish. I usually look up towards the ceiling when walking these carpets as the ceiling in the hallways are white. When in larger areas it sometimes doesn’t work to look up at the ceiling because of the lighting.
I’ve not been aware of hotel carpet patterns before. Now I will be. Horrible!
So glad to hear I am not the only one bothered by those carpets…. Never met anyone here who could understand my dislike for them!
I have a feeling you are joined by a great many people!
Oh this triggered so many memories! I would say another big one is those sparkles on birthday cakes that everyone else thinks is so fun but smells like toxic smoke…my ears start ringing and I get really hot…then I can not breathe while everyone else is having a blast…this was a very thoughtful post…it is what my life is like and my kids and why our home is our haven- we have nothing that bothers us in it- and everything that comforts:) at least one place makes us feel fully safe:)
Interestingly you cannot get those sparkler here in the US or at least not in NYC.
Both kids chose the colors they wanted their rooms painted. E: red and turquoise N: periwinkle blue and lilac Their bedrooms looked so wonderful it inspired us to paint the whole place!
those colours sound lovely! I would love to see those colours together…and I am glad you can not get those sparklers there…they are awful.
P.S. I wrote a sensory post on home Decor and tips for Autistics here if anyone needs some tips or thoughts in that area…of course I say that every autistic has different preferences and bothers but there are some general guidelines as well as what I do in our home and why that may help people brainstorm what they can do in theirs:) It was worth it!
Thanks for sharing your link. I couldn’t live in your house because there’s waaay too much stuff on display 😊 but I really liked your five guiding principles, and I’m going to have to give them some serious thought.
My home is the place where I feel least relaxed and secure, which is desperately ironic and very silly. I get very overloaded by ‘stuff,’ but meltdown at even the thought of getting rid of anything.
Somebody could make good money by setting up as an Autistic-friendly interior designer….
Lol- yea- I have nothing in storage. It’s either out or it’s non existent. I use everything:) I am the opposite of you…but I have helped friends design minimalist homes too…it all comes down to personality and sensory preferences…luckily my kids match mine!:) I have a very bohemian free spirit essence and the house matches that.:)
I am glad you like the guideposts. I ended up heavily editing the post because I was not happy with it and felt like I should not have pointed to it actually but those five guideposts really helped the kids and I so if they can help others…
Fell down a lot when I worked someplace with a zebra-stripe carpet.
Can’t handle the loud cash register beeps at one grocery so I don’t shop there, just because of that.
Fluorescent lights make me headache-y and nauseated.
The world is too loud, fast-moving, and confusing.
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Thank you. I needed this. xo
Loved this! I never had a problem with sensory overload (except for smells – strong smells would make me feel like I had walked into a wall) until I started really paying close attention to my son’s sensory needs. Trying to see things in his world made me incredibly sensitive to all kinds of sensory overload, especially sounds and movement. It is amazing how loud and frenetic our world can be.
Yup, me too. Now I’m hyper aware of when the air pressure changes, loud music, crowds and perfume, the bane of my existence.
Love you so much xoxo
Ibby ibby ibby! IBBY!! ❤
That’s a great post of seeing and feeling the world through other’s experiences. It’s amazing how we cope with so much stimuli! Your post may help others become more sensitive to people around them. Thanks for sharing.
Thanks so much. All the comments, as always, are so enlightening.
With the waning sun I have gained my autistic sensibilities once again–smells are overwhelming, not in my nose but somewhere in the middle of my head which also vibrates intensely at times. Lights stay in my vision for extended periods of time, as do patterns like those in carpets or trellises or road traffic. The dentist could not numb my jaw yesterday, the nerves all travelling to other parts unknown…hours later my face went numb. One of these is manageable, several are overwhelming, all the ringing in my ears, lights in eyes, nerves innervating other things, are overwhelming at times. Turning it off is a blessed relief–it is when I don’t have to “try”, it is where I am taken care of as I am sucked inward, spiraling down into self which cannot interact with the world in a cohesive, extensive, corroborative way. It will all change with the thaw. LOL
Thanks so much for sharing your experience, Bev. The dentist’s visit, in addition to everything else, sounds terrifying, as well as painful.
Weirdly so, it was not painful–LOL
Wow. Very well said. Students in a homeschool group recently tried to replicate the stress one teen with autism goes through in order to be in he heir classroom and found it extremely difficult just for a minute. They even recognized that they only did what they could, as he describes it. After that they all try to be much gentler and tell him how amazed they are.
And imagine how hard it must be for that teen to do the work and focus for any length of time. Agony…
Thank you, great post as always. I had a sound sensory reaction the other evening. After a long day out picking up groceries I had to stop at one other place because the previous one did not have everything I needed. I knew I was tired and needed to get home but pushed myself anyway. As I got to the checkout I started hearing this sharp, intense beeping and it was all I could do to concentrate on completing the purchase. I remember mentioning it to the cashier. It turned out to be one of the mobile shopping carts that was plugged in recharging. A seemingly simple sound that had me all but crawling out of my skin. I’ve always had challenges with motion and patterns. I was the one always car sick as a child. I had to sit on the floor in the back seat with my head on the seat (1960’s before car seat belt and car seat requirements). Escalators to this day are a challenge and I have to wait to step on so that I can get my bearings. If it happens to be a multi-floor escalator like you would find in a mall, and it’s open to the floors below I will take the stairs or look for the elevator. I can’t handle the stairs moving and seeing all the way to the floor three floors down.
Oh my goodness, I used to be the kid who was car sick too! All it took was getting into the car and I’d begin to feel sick, without it even moving. Awful, awful, awful
Being so sensitive can affect everyday life in many small ways. My shoes bother me, but my bare feet on the hard floor bother me when I sit down, so I cross my ankles, but the back of my foot touching my ankle bothers me too.
If my back isn’t straight against the sofa’s back it bothers me because I feel something on my lower back that isn’t pressure, but is some kind of sensory pain, so I press my back against the sofa’s back, and this leaves the edge of the sofa pressing against the flesh on the back of my knee…
Whatever I do, it’s no good. and when walking outside, I grimace with pain when a grain of sand gets in my crocs. I try pulling it out but can’t see it because it’s so tiny. I feel for it with my oversensitive fingertips.
And my fingernails feel like there’s orange peel stuck to them with they grow slightly too long, but still too short to cut without hurting myself.
This is sensory pain, not much different than physical pain, and not much easier to bear, either.
Thank you for sharing this… and also for pointing out that sensory pain is different from physical pain. I’m not sure I understand that, but I’m trying to. If you don’t mind elaborating, but understand if you don’t, I’m wondering does the sensory pain become physically painful too or no?
For me sensory pain can become physically painful or I can get stomach flus or be hospitalized if it is very bad ( happened a lot in childhood) A great link is a sensory post links of 17 different bloggers who did a “sensory blog hop” that I was part of and all these posts really helped put words to differing accounts of sensory overload:
Oh wow! Thank you for saying that. I was trying to describe to someone recently about how it felt, and it never occurred to me to separate the two.
Thinking about this for a minute and for me anyway, the difference between sensory pain and physical pain (both are pain) is that sensory pain comes from inside. Like my reaction to a tag on clothes. The reaction comes from inside, like an internal stimulus is triggered, as opposed to physical pain because I walked into a bit of furniture. Not sure if I’m making sense. Sensory pain is like my bodies inflammatory response to something. If it keeps up and I don’t address it then it becomes physical pain. Going to sit with this for a bit because it seems important to me.
It doesn’t become exactly like a physical pain, but it reminds me of a physical pain. These two kinds of pain are close, although not similar. The only way I can explain it is that it’s like the pain you get from an ice pack, frostbite, not exactly the same kind of pain as a blow, burn, or cut.
But this isn’t a perfect example either, because it’s not completely a physical pain. It’s like when you anticipate pain and imagine it very vividly. Or like blinding light in your eyes.
Great post! Bold patterns cause me visual problems; the pattern seems to move. On a carpet it looks to me as if the floor is undulating. Over a large enough area it will make me dizzy.
Sudden loud noises are like somebody fired a camera flash in my eyes: all I can see is bright white. The overload shuts down my senses for a few seconds: it’s the same principle behind so-called stun grenades, but my thresholds are lower than most people. It can take me several minutes to recover because it usually triggers an attack of anxiety, and I’m not very responsive during that time.
Thanks so much for sharing this Alex.
So much love and appreciation.
I remember this so vividly. What stuck foremost in my concerns at the time was my vision blacking out because that much sensory onslaught sends my blood pressure through the roof, putting me at real risk of a cardiac incident.
These type of incidents, above anything else, have been what pushed me out of the 9-5 work world, because what good is earning a paycheck if it kills me?
Until we get people to understand sensory processing not as a set of preferences, but as tangible physical issues, we can’t get real access.
((((Bridget)))) thank you for your friendship and allowing me and so many others to learn from you.
This is such a good reminder to me to be sensitive of my boys’ needs in this area. Thank you!
Grocery stores are generally sensory nightmares. A few weeks ago I went to the supermarket on a Sunday evening and they had a ton of teenage employees cleaning every existing surface with bleach based cleaners and some other toxic smelling stuff. They were wheeling it around on carts and spraying it all over the place. It was horrid and also really hard to think about buying a lot of food (doesn’t someone in management consider that??). I spent the whole time super-perseveratively pointing out to my husband every single person who was cleaning something as if that would somehow make it less awful. At least he knows to just nod and sympathize. 😀
That sounds awful and really unappetizing!
“A few weeks ago I went to the supermarket on a Sunday evening and they had a ton of teenage employees cleaning every existing surface with bleach based cleaners and some other toxic smelling stuff. ”
Oh yes! And restaurants are another place. I’m sitting there with my family, already doing my best in a noisy atmosphere and then someones decides to clean the next table over. I know it has to be cleaned, wiped down for the next person and I appreciate that. And do you have to use a spray bottle that creates an airborne mist that carries everywhere??? Not to mention the toxicity of the chemicals? I might as well be done with my meal, never mind how I’m now feeling after that chemical deluge. 😦
Great perspective! How we process sensory information impacts every aspect of our lives!
Reblogged this on Spectrum Perspectives and commented:
Really important perspective – very vivid!
I surely feel for Bridget… I have a similar issue with carpets (hospital and hotel carpeting seems to be the worst! Did you know that in some casinos they purposely make the carpeting and exits confusing so it compels people to stay?) and once almost had a meltdown when taking my husband to get a medical procedure. I was trying to wheel him back down to the car when I noticed the carpeting (already overloaded by his reaction to the procedure, my stress, etc) and had to sit down by the elevators until I was more mentally prepared to power through it.
Grocery stores really are the worst. That’s pretty appalling that the cashiers thought it was funny they had startled you. As someone with PTSD, if someone laughed at me for being startled I would have probably wanted to slap them. Instead, I tend to be hypervigilant in grocery stores as if preparing myself for the unexpected. I once had a near-meltdown because there was an aisle half-filled with nothing but the same brand of cracker. I just could not get over the visual overload of the rows and rows of the same thing. Sounds completely bizarre, but there you go! I deal with those sort of displays a *tiny* bit better by telling myself that they have to make displays like that in stores, but I still don’t like it.
I would love it if there were sensory-friendly grocery store times, like there are sensory-friendly movie screenings!
Vegas is a horror house of sensory assaults as far as I’m concerned!
I don’t know that the cashiers actually noticed how upset I was. I don’t think most of them even saw me standing there gritting my teeth.
I would love sensory-friendly grocery stores!
A lot of sensory things *ARE* physical pain for me. Bright lights. Loud sounds. Clothing scraping my skin. Getting into a cold swimming pool actually makes me feel like my skin is on fire. There are more, but these come to mind. For me, it is not “like” physical pain, it *IS* physical pain.
Hot water also makes all my nerves go numb–do you find this also? I have previously described what you are talking about as “every cell in my body screaming”
The crook of the arm – Henry taught me about the stability that provides . I love how beautifully you write about things that Em and B and others have made you more aware of – I feel the same . How could I have NOT noticed the lights , the patterns, barometric pressures, the weight different people bring to spaces? So grateful that I now notice more often than I did before and even more so that I have a patient son and friends to guide me.
Exactly! Love, love, love you Lauri. Please tell Henry I say hello and miss all of you!
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