Today I took Caley out, at her request, to go grocery shopping. We were out of a bunch of food, so we needed to stock up - which meant we went down each and every aisle. It was a long trip, in a grocery store we hadn't gone to before. Moreover, since Caley's learning to drive, we'd just come from about 20 minutes of her practicing with me, which is hugely anxiety inducing for her, and the decision to practice driving was a last minute change in plans. As you can imagine, going into the store she was already stressed out. Here's Caley's story of what it was like (I typed, she dictated):
"Okay, so I sometimes lose my words when I'm stressed. And one of the places I lose my words the most is the grocery store. It has a lot of sensory stuff going on and there's a lot of people. Everything was beeping and there were lots of smells and sounds and people and the intercom was evil and there was lots of unexpected loud noise. And it didn't help today that I'd just driven and I'm scared of driving. I was stressed because of it and when I get stressed it's easier for me to have issues with sensory and pretty much anything.
While I was there, it didn't help because it seemed like everybody was staring at me and Creigh. I couldn't figure out why they were staring at me, but it made me uncomfortable and it made me lose my words more. Later, me and Creigh (well, mostly Creigh) figured out that the people in the store probably thought we were a lesbian couple. I just needed a squish. But one, that didn't help, and two, you shouldn't be staring mean-like at anybody. It's very sad that people don't know siblings that are all cuddly with each other."
So as you may have noticed, there were a lot of layers to her experience. Let's start with word loss. When under stress, even Autistic people that can normally speak completely fluently can 'lose their words' - either completely or partially, as happened to Caley. Her word finding ability is impaired. She compared it to what happens to some peoples' words when you have a migraine with an aura, for those of you who have those. It's a very frustrating experience for her. Losing words in these circumstances isn't a permanent thing, and it doesn't mean Caley's "regressing" or anything like that. It just means that under a lot of stress her word finding abilities can get impaired, but when the stress is gone, they return.
Two, the 'lesbian couple' thing. As I've mentioned before, people mistake Caley and me for a couple decently often. Because of Caley's sensory dysfunction she can get overloaded. When she is in danger of overloading, there's one thing apart from reducing the problematic sensory stimulation, that consistently helps: bear hugs ("squishes"). No matter where we are, if Caley's overloading I will totally give her a bear hug at her request. It provides a soothing sensory input for her, which helps. In addition to the bear hugs, I will also hold her hand, link arms, or do any other physical shows of affection (and positive touch) that help her. To top it all off, remember, one of Caley's stims is saying "I love you." Between all these physical shows of affection and love, people get the idea that we're a lesbian couple.
Unfortunately, we don't live in a terribly accepting area. Hence, the staring. And yes, I'm quite sure that we're being mistaken for a couple and not simply being stared at because people think we're odd. I know this because we've actually been spat at before. (I know, the area we live in is such a bastion of acceptance. [sarcasm])
Two things here. One, so what if we were? Caley and I are thoroughly pro-LGBTQ rights and acceptance, and it makes us both sad that dealing with this attitude is a lot of people's daily realities. And, two, as you might imagine, glaring daggers of hate being pointed at you don't really help when you're trying to avoid sensory overload.
So, what did being in that store with all of those sensory problems aggravated by stress feel like for Caley? Well, Caley herself said, "In some ways trying to explain a sensory overload is like trying to explain what it's like not wearing glasses when you need them. Very blurry." We both still maintain that (apart from the spots on her vision, she doesn't get those) this video does the best job of explaining it. If you haven't checked it out when we posted it before, watch it now.
"Okay, so I sometimes lose my words when I'm stressed. And one of the places I lose my words the most is the grocery store. It has a lot of sensory stuff going on and there's a lot of people. Everything was beeping and there were lots of smells and sounds and people and the intercom was evil and there was lots of unexpected loud noise. And it didn't help today that I'd just driven and I'm scared of driving. I was stressed because of it and when I get stressed it's easier for me to have issues with sensory and pretty much anything.
While I was there, it didn't help because it seemed like everybody was staring at me and Creigh. I couldn't figure out why they were staring at me, but it made me uncomfortable and it made me lose my words more. Later, me and Creigh (well, mostly Creigh) figured out that the people in the store probably thought we were a lesbian couple. I just needed a squish. But one, that didn't help, and two, you shouldn't be staring mean-like at anybody. It's very sad that people don't know siblings that are all cuddly with each other."
So as you may have noticed, there were a lot of layers to her experience. Let's start with word loss. When under stress, even Autistic people that can normally speak completely fluently can 'lose their words' - either completely or partially, as happened to Caley. Her word finding ability is impaired. She compared it to what happens to some peoples' words when you have a migraine with an aura, for those of you who have those. It's a very frustrating experience for her. Losing words in these circumstances isn't a permanent thing, and it doesn't mean Caley's "regressing" or anything like that. It just means that under a lot of stress her word finding abilities can get impaired, but when the stress is gone, they return.
Two, the 'lesbian couple' thing. As I've mentioned before, people mistake Caley and me for a couple decently often. Because of Caley's sensory dysfunction she can get overloaded. When she is in danger of overloading, there's one thing apart from reducing the problematic sensory stimulation, that consistently helps: bear hugs ("squishes"). No matter where we are, if Caley's overloading I will totally give her a bear hug at her request. It provides a soothing sensory input for her, which helps. In addition to the bear hugs, I will also hold her hand, link arms, or do any other physical shows of affection (and positive touch) that help her. To top it all off, remember, one of Caley's stims is saying "I love you." Between all these physical shows of affection and love, people get the idea that we're a lesbian couple.
Unfortunately, we don't live in a terribly accepting area. Hence, the staring. And yes, I'm quite sure that we're being mistaken for a couple and not simply being stared at because people think we're odd. I know this because we've actually been spat at before. (I know, the area we live in is such a bastion of acceptance. [sarcasm])
Two things here. One, so what if we were? Caley and I are thoroughly pro-LGBTQ rights and acceptance, and it makes us both sad that dealing with this attitude is a lot of people's daily realities. And, two, as you might imagine, glaring daggers of hate being pointed at you don't really help when you're trying to avoid sensory overload.
So, what did being in that store with all of those sensory problems aggravated by stress feel like for Caley? Well, Caley herself said, "In some ways trying to explain a sensory overload is like trying to explain what it's like not wearing glasses when you need them. Very blurry." We both still maintain that (apart from the spots on her vision, she doesn't get those) this video does the best job of explaining it. If you haven't checked it out when we posted it before, watch it now.
Impressively, Caley made it through the whole store, but it was a really rough experience. This is just one small snippet of what every day aspects of life can be like for Autistic people, a walk in Caley's shoes, so to speak' and Caley and I shared this in hopes of helping others understand sensory overload.
-Creigh
-Creigh
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