A few years ago, my partner and I scheduled a night out with friends. It had been on my calendar for weeks, along with all the corresponding details: date, time, location, and the friends we’d be going out with. After a stressful week at work, I was mentally exhausted. Still, I was looking forward to hanging out with friends and letting off some stream over some food and drinks.
Twenty minutes before we were set to head out, my partner’s phone pinged. “Slight change of plans,” he told me, eyeing his texts. “They want to meet at eight, not seven.”
My skin prickled a little, but I took a calming breath. “Okay.”
I told myself this was fine. Changes happen.
As my partner texted them back, I retrieved a book off the kitchen counter and turned to where I’d last left off in it.
“They were also wondering if we can shift the location and try that new Peruvian restaurant tonight if they’re able to get a last-minute reservation.”
“Yeah, sure ...” More prickles. Another deep breath. ‘Changes happen, changes happen,’ repeated in my head, but it was hard to find comfort as a third notification pinged in.
“And … is it cool if they invite a few other people?”
The prickles burst across my skin, until I became full-on anxious.
None of these changes were humongous. I suspect most people would view them as minor inconveniences, at most. But as an autistic person who has always found comfort in routines and plans scheduled down to the finest detail well in advance, each little change built up inside me until it felt like something much more overwhelming. What would change next, I wondered. My anxiety spiked higher.
As an adult, this has happened many times in my life, and I’ve learned how to handle it with grace (most of the time, anyway). But when I was younger, it was more difficult for me to accept sudden changes. I often felt helpless when plans shifted on the fly without my input or prior knowledge. This was a part of my experience as an autistic kid that I wanted to explore within my sophomore novel, Ellen Outside the Lines.
Ellen, a thirteen-year-old autistic kid, is looking forward to going on a school study abroad trip with her Spanish class to Barcelona, Spain during the summer between seventh and eighth grade. She’s an avid bullet journaler (which she calls a dot diary) and has every day mapped out by the minute based on a schedule she found online for last year’s trip. Ellen is excited for this experience. More importantly to her, she is prepared for it.
Until she isn’t. Things start going off the rails the moment Ellen arrives at the airport, when Ellen’s teacher announces a change to the trip format. A scavenger hunt will replace many of the field trips and lectures Ellen had so carefully mapped out in her journal. Making matters worse, Ellen is assigned to a team away from her best-and-only friend, Laurel, the only person she feels really understands and accepts Ellen for herself.
These changes build up to intense anxiety for Ellen, as it often does for me and other autistic individuals. In the story, Ellen describes it as feeling like her world has tipped off-axis. This overwhelm of one change after another coming at you, rapid-fire, coupled with the inability to find your balance after believing you knew what to expect, is an experience I’ve heard many autistic folks express having difficulties navigating. When I was Ellen’s age, I didn’t know I was autistic, so unlike Ellen, I also didn’t have the knowledge to even explain why these changes felt like they stressed me out so much more than they did my classmates.
Ellen, on the other hand, knows she is autistic. She has a therapist and parents who support her. This doesn’t lessen the anxiety she feels when changes arise, but it does allow her to understand the origin of her stress. Once Ellen becomes accustomed to her team and settles into the new trip format, she also begins to realize that what once felt like the rug being pulled out from under her is in reality an opportunity to get to know other kids better. It also allows her to embrace unanticipated changes more easily in the future.
I hope that by showing the study abroad trip through Ellen’s perspective—every moment of overwhelm but also of joy and awe as she learns to adapt to her new surroundings—autistic readers will find moments they relate to, based on their own experiences. I also hope readers who are not autistic will better be able to empathize with autistic people and recognize any anxiety their autistic friends are feeling at what might seem like even a tiny change to the day’s itinerary.
As for me? My night out with friends didn’t go exactly as I’d planned. But the time change gave me a chance to make progress with the book I was reading. That Peruvian restaurant ended up serving food that was fabulous. And I ended up having a great conversation with the new people who joined us. Ultimately, a little bit of anxiety at our altered plans ended up well worth it once I took my calming breaths and embraced the changes as each came, just like Ellen learns to on her trip to Spain.
A. J. Sass (he/they) is an author whose narrative interests lie at the intersection of identity, neurodiversity, and allyship. His debut novel, Ana on the Edge, was a 2020 Booklist Editors’ Choice, an ALA 2021 Rainbow Book List Top 10 for Young Readers, and a Junior Library Guild Gold Standard selection. His sophomore novel, Ellen Outside the Lines, is also a Junior Library Guild Gold Standard selection. A. J. is the co-author of Camp QUILTBAG* (Algonquin, 2023) and a contributor to the This Is Our Rainbow: 16 Stories of Her, Him, Them, And Us (Knopf Books for Young Readers) and Allies: Real Talk About Showing Up, Screwing Up, And Trying Again (DK/Penguin Random House) anthologies. When he’s not writing, A. J. figure skates and travels as much as possible. He lives in the San Francisco Bay Area with his partner and two cats who act like dogs. Visit him online at sassinsf.com and follow him @matokah on Twitter, Instagram, and TikTok.
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