There are certain common phrases, like "What's up?" or "How's it going?" that have no direct logical answers. As an autistic person, being asked either one of these two questions is usually quite stressful. See, I know how I'm supposed to respond to a simple "How are you?" or "How was your day?" There are straightforward responses to those questions, there are scripts. I could respond with "I'm good, and you?" or "It was fine, how was yours?" and they'd say "It was good," and we'd smile and walk away, or move on to more interesting conversation topics. But with questions like "What's up?" it's not logical or appropriate to respond "I'm good, and you?" because the response doesn't fit the question. The question is, "What is up?" And that, my friends, is a mystery.
When faced with a "What's up?" my go-to response as of late (and by that I mean for the majority of my life) has been "the ceiling," or "the sky," depending on the location of myself and the other person. Other times, I say something like "I'm standing in this line with you." These are humorous yet logical responses to a question that has no clearly defined answer, if the question is to be interpreted in a manner faithful to its intended meaning. From what I've observed of neurotypical conversation, the question "What's up?" invites a myriad of completely different responses, each valid in their own way. An answer could be the classic "Not much, what's up with you?" but a more sophisticated and honest answer might be "I just finished a math test," or "I'm headed to my sister's basketball game." The problem for me is, I don't know which response to use in any given circumstance, given that the responses to "What's up?" are usually specific to the respondent. Additionally, sometimes the question isn't intended as a question at all. Sometimes, it's intended as a greeting, and the person asking the question doesn't actually want a response. Even if the question is genuine, the person probably isn't super invested in hearing about your day, so you have to limit your reply to a short sentence with a return question.
Not knowing which short sentence and return question to say, if any, is a problem exacerbated by the fact that I can't tell reliably when a person is asking the question genuinely, or as a greeting. So, to avoid incorrect or unwanted answers, I limit my replies to short and simple references to the sky, ceiling, or other aspect of our shared environment. I simply don't have the energy or willpower to figure out what it is that every "What's up?" -er wants from me in my response, so I don't give it to any of them.
I get frustrated and confused whenever I'm asked a ridiculous question like "What's up?" And yes, it really is a ridiculous question. It's illogical and has no clear answers. Why neurotypicals have universally decided that it's a good conversation opener is beyond me. There are no rules, no scripts, no reasonable and clearly defined boundaries for what to do in a "What's up?" situation. Yet, literal answers to such a question are deemed "wrong" and socially unacceptable. People who answer "the sky" or "the ceiling" are frowned upon for not putting in the effort to maintain the facade of amicable social interaction that is so clearly beneficial to both parties and entirely necessary for the day to move forward. And that is precisely the reason why I continue to answer the way I do. I don't care about that facade.
Sure, I'm perfectly happy to play along when there are rules, when I know that I'll be successful if I follow the script, and that perhaps my day will be slightly enriched by a smiling interaction with an acquaintance. But should that aquaintance decide to make my life exponentially more difficult by choosing to play a game with no rules, in which I could be penalized for an arbitrary reason that was never spelled out beforehand... in that case, I will simply refuse to play.
I rely on scripts to get me through the day, and I have nothing to hold onto but concrete reality when an un-scriptable question or comment comes my way. My experience of life and social interaction is detailed and intense, and this constant feed of sensory, social, and emotional input is often chaotic and overwhelming. Without scripts, I have no navigation tools to row through the choppy waters of socialization that come with the five minutes before the bell rings at the end of class, or an informal greeting in a coffee shop. There's so much information to sort through at any given moment, so it would simply take too long for me to formulate a completely original response to every question people ask me, in the time frame allotted.
If I don't remember my scripts, I end up simply failing to respond. I can't count the number of times someone has said something to me as they passed me in the hallway at school and I only registered what they said three seconds after walking past them. By that time, it's too late. So I have to be prepared with my "Good!" s and my "Fine, how are you?" s. But what happens if the person walking by, who I might not even recognize at first, asks me "What's up?" Chances are, I won't respond at all, and they won't even know I heard them- not for lack of trying, but because I simply can't.
Neurotypicals and allistics: be clear and direct when communicating with autistic people; and if you're not going to be clear or direct, at least make sure we have adequate time to respond. I promise you, we're not being robotic or dull or emotionless because we want to come off that way. Our world is a lot more colorful and chaotic than yours, and we need your help to navigate it.
So, please don't ask me "What's up?"
Look above you and find out for yourself.
As some of you might already know, due to posts on our instagram page, I'm currently enrolled at a college called Landmark.
Landmark College is a four year college located in the small town of Putney Vermont, within the United States. It is a small school (400-500 students) that specializes in teaching differently, offering programs and support for students with Autism, ADHD, Dyslexia, and other learning differences. It has been awarded Best Undergrad Teaching College of 2020 and Most Innovative College of 2020 by U.S News on September 9th of 2019.
So far I've only been at Landmark for one semester and as someone who has always struggled with academics, never have I ever felt so confident in learning. I've learned so much about myself within the past almost three months! I have a great support system, a good circle of friends, and an awesome roommate. Usually within my first semester, especially during winter, I fall into a deep depression which is mainly because of seasonal depression but also due to stress from school. This year I haven't felt myself hit that low point yet. My grades are all A's and B's and my professors are wonderful. They really try their hardest to connect with each student to find out what works best for them and how to support them in any way. My psychology professor even brought in a box of fidget toys and coloring pages for my class to use during his lectures. Currently I've been very active with Landmarks LGBTQIA+ diversity center, Stonewall and I hope to get a job as a staff member for the center next semester. I've done a couple of open mics here and there and sometimes I'll just bring my guitar to the dining hall and just start playing because why not? The community here is so strong. Everyone supports each other regardless of their background and the transition from home-life to college-life was so smooth that I rarely feel homesick.
If any of you are interested in learning more about Landmark, I've added the link to their website in the Useful Links section of the website. And if you have any questions, feel free to ask!
Last night, I stumbled across this TED Talk given by an autistic artist and advocate, Dr. Dawn-Joy Leong. Her talk really resonated with me, and I found the immersive video and audio towards the end of the talk to be a wonderful representation of the joys of stimming and presence in sensory experience. Her speech was all-in-one: an explanation of what autism is, the current politics of autistic self-advocacy, and an open door into the world as viewed through autistic eyes. Anyway, enough of me gushing about it; you can watch it for yourself here.
by Eden of @the.autisticats
It was a warm day in Illinois at the end of August, two weeks before Michelle was supposed to leave town for college. The day prior, she had texted me to ask if I wanted to have a picnic at Greenwood park, to see each other and say our goodbyes before she left. That sounds like fun! I’ll ask my mom, I replied. My mom was eager for me to get out of the house, so I let Michelle know I could come. A few hours later, she asked if it was okay for her best friend Natasha, and Natasha’s boyfriend, Brandon, to tag along. That’s fine, I said, ask them to bring some food as well.
Michelle picked me up from my house in her red sedan the following afternoon. I carried an old blanket and a reusable grocery bag full of picnic food to the car, where I saw Natasha in the passenger seat. I sat in the back seat with Brandon, who looked like he’d been out in the sun, as Michelle pulled out of my driveway. I put my bag and blanket on the car floor and buckled in, then caught him eyeing my worn-out sneakers and baggy green sweatshirt. I eyed him back, noting the blue friendship bracelet on his left wrist, and wondering if that meant I should feel less intimidated. Natasha turned around in the passenger seat to look at me, tucking her dyed-blonde hair behind her ear as she smacked and chewed on a piece of mint gum.
“So who are you, again?”
She turned back towards Michelle, unsatisfied with my answer.
“We go to school together,” said Michelle, keeping her eyes on the road.
“Well, went to school together. School is over now,” I corrected her.
Natasha sat back in her seat, then took out her phone to check her reflection. As she rearranged a few stray hairs and applied lipgloss, I noticed that she had a lifeguard whistle around her neck. She seemed like the lifeguard type. I sat quietly for a few more minutes, peering out the window at passing cars and fields, before realizing that I didn’t smell anything other than the Mexican food at my feet.
“What food did y’all bring?” I asked.
Silence. Then Michelle took pity on me.
“There are some sandwiches in the trunk. I don’t know what else.”
“Okay, that sounds good… I brought bean and cheese burritos, and some chips and guacamole. I made all of it this morning. I think y’all will especially like the guacamole. It’s my grandmother’s recipe. She passed away earlier this year, but my mom already knew how to make it, so we didn’t lose the recipe with her.”
“Wow, that’s sad,” Natasha remarked without feeling.
“Not really. Eating her recipes makes me feel close to her even though she’s gone. It’s like she becomes part of me, or something,” I laughed, “Maybe when you eat the burritos you’ll feel that way too.”
“Um… I hope not,” said Natasha.
I saw Michelle give Natasha a brief look. The kind of look that says, I know how you feel, but leave her alone. Or maybe, I’ve talked to you about this. I knew I must have said something wrong, I just didn’t know what.
“Yeah maybe not, since she’s not your grandmother,” I tried to correct myself.
None of them responded. I kept quiet the rest of the car ride.
Michelle and I had been neighbors when we were kids. She lived across the street, and my parents encouraged me to play with her often, so we did. I’d go over to her house for after-school snacks and weekend playdates in elementary school. She liked to control the games we played, and that was fine with me because I wasn’t really sure how to play them anyway. We were close in elementary school, but less so in middle school, when she moved to the other side of town. In high school, she only acknowledged me when she knew none of her other friends were around. I was mostly okay with that. I took what I could get.
We didn’t talk much at school, so the majority of our contact was over text. I initiated conversation most of the time, sending her memes I thought she might like. She usually responded with an LOL, or haha! Something like that. The last time she had invited me to do something was junior year, to come over to her house for a Halloween party. I was dressed head to toe like a phoenix, with a mask covering my face, so I’m not even sure anyone recognized me. That was my first party, and my last. The odor of alcohol and inescapable pounding of the speakers overwhelmed me, so I ended up hiding in Michelle’s bedroom closet. She found me there after everyone else had left, when she was looking for her bathrobe. Once she’d gotten over the shock of seeing a giant phoenix crouched beneath her clothing rack, she offered to drive me home. So I was surprised when she invited me to go on a picnic, but it would have been silly for me to decline, seeing as I hadn’t done anything social for the entirety of the summer.
We parked in the gravel lot outside Greenwood park. There weren’t any other cars, which made sense because our town was small and mostly rural, and it was a Tuesday afternoon. The park itself was a large field overgrown with weeds and wildflowers, and it didn’t have a playground or anything. It was just a park. A piece of public land that people went to when they felt like being outside in nature, which wasn’t hard to do where I lived anyway. Maybe that’s why it was so neglected. People had other places they could go.
Everyone unbuckled and got out of the car. I picked up my grey blanket and bag of burritos and stood outside the car door, waiting for Michelle to get the other food out of the trunk. She took out a white styrofoam cooler with a red handle, and nodded her head towards the park entrance. We passed through the old wooden fence posts that lined the front end of the field, and headed to a spot in the clearing. The park was surrounded on three sides by a dense forest, mostly of oak and birch trees. Michelle stopped walking at a spot around 15 yards from the forest, where we could still see the car. We all looked at each other, and I realized that I was the only one who had brought a blanket, so I laid it down for all of us and took a seat. It wasn’t terribly big, but it would have to do.
Michelle sat down across from me, then Natasha and Brandon on either side. The two of them sat as close to Michelle and as far off the blanket as possible. I was used to that sort of thing. Michelle and Natasha started chatting about college, and I learned that they’d be going to the same school, in Santa Cruz. Then Natasha turned to me.
“What about you, where are you going to college?”
“Oh, um… I’m- I’m not going yet. I’m taking a gap year,” I said.
“Why?” She frowned.
“Because… well, I’m just not ready yet. I’m working on regular life stuff first.”
“Oh. Got it.” She smiled, but her eyes were cold.
I got four burritos out of my bag, one for each of us, and unwrapped the tinfoil on one of them. I started to eat. Michelle saw me, then took out some sandwiches from the cooler. She passed one to Natasha, who passed it to Brandon and took one for herself.
“Does anyone want a burrito?” I asked.
No response. Then Michelle.
“Maybe later, after my sandwich.”
Natasha and Michelle talked about things best friends talk about, and how excited they were for California. Brandon chimed in occasionally, and I learned that he was already in college, in Arizona. He’d flown back to Illinois for summer break, to see Natasha and his family. I finished my burrito, and took out the chips and guacamole. I’d put the chips in a Ziploc bag and the guacamole in a tupperware, both of which I opened and placed in front of me on the blanket. There was a lull in the friends’ conversation, so Brandon took out his phone and a bluetooth speaker.
“You guys down for some music?”
“Yeah, totally,” said Natasha.
Michelle nodded agreeably, and I said nothing. He started playing his music, placing the speaker on the center of the blanket, near my guacamole and chips. It was mostly rap, with a few of the year’s hit songs mixed in occasionally. I didn’t mind the music itself, but it was too loud for me to enjoy it. I sat through the first song, then a few more, but the drums and bass were really starting to bother me. Each thump and sharp edge of the snare drums hit me as a violent crashing wave, but the three friends seemed fine. Their conversation had resumed, gotten louder to compensate for the noise. I watched them as their voices distorted. Sound ate its way into my skull and my muscles tightened in response, as if that would keep it from pouring in. I needed the music turned down, or I would have to walk away. And I didn’t want to walk away.
“Brandon, could you please turn down the music?”
No response. I made brief eye contact with Michelle, but the friends continued to talk.
“Brandon, could you please turn down the music?” I asked, louder this time.
“Why?” Brandon turned to look at me.
“Because it’s too loud,” I said, flinching.
“This is too loud?” He repeated, picking up the speaker and thrusting it closer.
The sound surged over my head and I began to drown in it.
“Yes! It’s too loud!” I shouted, scrambling off the blanket.
I must have kicked my guacamole when I tried to escape the speaker, because the next thing I knew, it was upside down on Natasha’s white jean skirt. She stared at me, eyes wide open. Brandon dropped the speaker.
“What the fuck?!” Natasha yelled, “What are you, a spaz? Are you retarded?”
“I’m sorry! I’m sorry!”
Michelle looked frozen, and I wished I was too. Prickly heat built in my face and chest, the rattle of snare drums in the speaker piercing my ears and making me dizzy. I needed to make that sound go away. Turn the music down. Please could you turn down the music. Please turn the music down. Please, Brandon, turn down the music. A sob escaped as I reached onto the blanket, picked up the speaker, then threw it as far as I could. Brandon yelled, and ran after it. I couldn’t see very well anymore. Everything was blurry because of the tears. I barely made out a red-faced Natasha putting her lifeguard whistle up to her mouth.
“Was that too loud for you? What about this?” Her voice echoed.
Then she was on top of me, in the grass, blowing her whistle in my face. I heard Michelle yelling for her to stop, but it might have been my voice instead. The ringing and the pain kept coming and then Brandon was above me too, and I was hot and sweaty in my stupid green sweatshirt in the August sun, and my tears and mucus were hot as well. Brandon put his left hand on my shoulder and pushed me harder against the ground.
“Why would you do that!? You broke it!” He roared.
I tried to push him off but he was too strong, so I leaned over and bit his forearm, tearing off the blue friendship bracelet, then spitting it out. He howled in anger and pain as he recoiled, and I howled back. Natasha’s palm struck my cheek so I grabbed her arm, yanking her closer and then scratching her as she tried to pull away. Michelle must have yelled something severe at them, because they backed off slightly. I rolled onto my stomach, pulled myself off the ground, then sprinted towards the woods. They shouted after me.
I didn’t stop running until my legs gave out and I collapsed on the forest floor, spiderwebs in my mouth and on my hands. Birds sang and squirrels hopped through the branches above me like the world wasn’t falling apart, but it was. I sobbed, picked up a stick and stabbed it into the soil, twisted it around and bent it until it broke. Memories flashed and swarmed, on rewind and replay. I was four years old, when I asked two girls in my pre-k class if I could sit with them during lunch. They said no, and I asked why. “Because you’re weird,” one of them said. I grabbed a handful of leaves off a nearby shrub and tore them all to pieces. I was eight years old when I was diagnosed with autism. The psychologist told my parents I was lucky, that I was “very high functioning”. I pulled myself up against a birch tree, shaking, and wondered what he would say if he could see me now. I was six, seven, eight, nine, ten, eleven years old when my parents pinned my arms to my sides as I cried, rolled me inside my favorite blanket and sat on top of me as I struggled for air, gasping, “I can’t breathe!” My mom was Natasha, my dad was Brandon, and I couldn’t escape them. Turn down the music. “Is this too loud?” Spaz. Retarded. I screamed, the power of my voice ripping my chest apart and sending tremors down my torso, tremors that kept coming as I lay there, sobbing in the dirt.
I thought I might be trapped forever in that whirlwind of time and memory, but the forest was quiet and peaceful, and it slowly eased my body. I leaned into the birch tree and took some deep, shaky breaths. A chipmunk scurried in front of my sneakers, carrying an acorn in its mouth. It stopped for a moment and peered at me curiously, before scampering off. I wiped the tears from my face, and began to trace my fingers along the roots of the tree, touching each bump on its rough grey skin and letting my fingers dissolve into it. As I caressed the roots, I watched a procession of ants take small bits of leaves and tiny seeds back to their anthill. Some ants did not walk in line with the others. One of the stragglers was carrying a particularly large seed on its back, in a meandering path towards the same destination. I pondered the existence of the wayward ant, and hoped it would make it back to the nest. I sighed in exhaustion. There was a blanket of moss several feet to my left, which I pressed my hand into before lying down and resting my head on it. I turned my face so I could see the glow of sunlight around each soft green tendril. My fingertips grazed the edges of the moss, and I watched carefully as the little leaves bent down, then bounced back.
A shiny blue beetle crawled up my arm from the moss, waddling slightly as it walked. I smiled, picked the beetle up, put it on my forehead, and looked up at the branches of trees. Each tree trunk diverged into branches, which expanded into fractals; imperfect tributaries of translucent flesh and solid bone. The bones swayed and bent at the whimsy of clambering animals, as the flesh shimmered in the wind. I let myself sink deeper into the soil, and breathed. I wasn’t sure how I was going to find my way back to the park, because I didn’t know where I was. I wondered briefly if I would be lost forever, but I thought that was unlikely. I knew I could follow the sun, which was a sort of relief, but it didn’t really matter. I was in no hurry to leave the forest. If Michelle cared enough to find me, she would. If she didn’t, I was happy to let the other animals care for me instead.