'Everyone has things that they struggle with': Friendship inspires Iowa 14-year-old to write about autism

·6 min read
Brandon Lust and Alli Maile play one of their favorite games at her Ankeny home. The two are eighth-grade students and close friends.
Brandon Lust and Alli Maile play one of their favorite games at her Ankeny home. The two are eighth-grade students and close friends.

ANKENY — Sitting on her couch in Ankeny, 14-year-old Alli Maile begins explaining how she got the inspiration to write an essay about the intersection of autism and anxiety.

"Well, I've been friends with Brandon," she began —

"Since fourth grade!" he finished the sentence emphatically.

Alli smiled and kept telling the story while Brandon played his handheld video game, chiming in every once in a while.

"Brandon has a lot of anxiety. I thought it would be interesting for me to learn more about it, and how to communicate more about it, and how to help students and teachers understand more about it," she said.

Alli Maile and Brandon Lust are preparing to finish their eighth grade year, together, on June 1. Since meeting in fourth grade, the pair has grown accustomed to navigating school with the rhythm and ease that comes from a friendship built over time.

Their connection — not based on his autism diagnosis, but a friendship like any other — inspired her to argue for finding more ways to diagnose anxiety in people with autism early in life in a statewide essay contest this spring.

Brandon Lust and Alli Maile are students at Northview Middle School in Ankeny, Iowa. They have been friends since fourth grade.
Brandon Lust and Alli Maile are students at Northview Middle School in Ankeny, Iowa. They have been friends since fourth grade.

"What if I told you that a person with autism is five times more likely to get diagnosed with disorders such as anxiety and depression?" she wrote in her entry to the Autism Society of Iowa's Annual Statewide Autism Essay Contest.

But it's suspected there are more whose anxiety goes undiagnosed because of its overlapping symptoms with autism, Alli wrote. She argued for "reframing the anxiety diagnosis process" to accommodate people with autism, allowing for earlier detection and treatment of anxiety.

"It's important to do that when you're younger," Alli said in an interview. "So then, as life gets more challenging, and there will be more stress and anxiety as you get older, you'll have those (coping skills) already built up."

Alli said few people at her middle school in Ankeny talk about anxiety openly, even though she expects many of them experience it.

"I think a lot of people know what anxiety is, but maybe not how it can affect somebody," she said.

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Lunch tables and Mario's heroism

Though he was born in the 2000s, Brandon is able to identify editions of the game Super Mario Bros going back to the 1980s. Proudly displaying the characters on his T-shirt, he explained Mario by far is his favorite character because, simply, "he's a hero."

The game is among Alli and Brandon's favorite joint activities — even though Brandon often uses his expert skills in multi-player mode to navigate the world of animated mushrooms and turtles to victory.

"That's how I got introduced to Mario — I never played it before meeting Brandon," Alli said.

Now her favorite character happens to be Mario's ever-useful dinosaur companion, Yoshi.

Brandon Lust and Alli Maile playing a round of Mario at Maile's home in Ankeny, Iowa.
Brandon Lust and Alli Maile playing a round of Mario at Maile's home in Ankeny, Iowa.

Keeping the handheld version of the game close is among the strategies Brandon uses to reduce anxiety. At night, he often wakes up out of the blue teeming with worries that his game has been deleted.

The lunch table — a center of anxiety for many middle school kids — often gets Brandon worrying somebody will take his seat. That's why he has a routine of sitting at the same table, in the same seat, every day.

Alli is there at lunch, too, in their table mixed between students of different ability levels. They like to finish their time together with a round of cards, like Crazy 8's or King's Corner.

Brandon's mother, Kerry Lust, said it's not always easy to tell what's going on in her son's world at school. While kids are generally nice, it can be difficult to bridge the gap between inclusion at school into real, lasting friendships, like between Brandon and Alli.

"As a parent, you're always like, who is he going to sit with? Is he going to be all by himself?" she said. "And so he's got this great group that sits together, some of the kids with autism and also some of the kids without."

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Autism essay contest hopes for post-pandemic growth

Alli recognizes that having friends with autism, or any disability, is not always easy. For her, it's about understanding why something happens and how to help when it does.

But she also points out that's how any friendship functions.

"Everyone has things that they struggle with, and it is a job as a friend to help and encourage them," she said.

She's in her second round of contributing to the Autism Society of Iowa's essay contest. The nonprofit began soliciting entries in 2019 as a way to give young people an avenue to explore the benefits of having classmates with autism, said Executive Director Kris Steinmetz.

"And, also, (share about) those that have become a friendship, like Alli and Brandon," Steinmetz said. "Through the essay, they are able to share that information with other classmates, and others who could then learn from their experience."

The pandemic has taken a toll on the number of entries the contest receives. The hope is to build participation up again next spring.

The contest is open to students in kindergarten through 12th grade, plus those who are between 18 and 21 years old. More information can be accessed at https://autismia.com/annual-statewide-autism-essay-contest/.

More: Iowa educators reveal they are struggling to address student mental health in unique survey

Brandon Lust and Alli Maile in fourth grade, the school year when they first became friends.
Brandon Lust and Alli Maile in fourth grade, the school year when they first became friends.

To write her essay, Alli made use of what she learned the previous summer parsing through the extensive book collection at Brandon's house. His mother, a world history and psychology high school teacher, has a self-described "book problem" — she's accumulated so many they pile on top of bookshelves in the basement.

Alli read as many books as she could find on the topic of science and autism. Her reading list last summer included the 2016 nonfiction book about the history of autism and advocacy, "In a Different Key: The Story of Autism."

At one point, she wanted to become a speech language pathologist — until deciding that "throats gross me out." Now she's decided that her dual interests in psychology and brain function could merge well into a career as a neuropsychologist specialized in autism.

She said she's observed that people at school are kind to their peers in special education. But especially for those higher-functioning people on the autism spectrum, a misunderstanding of social skills can lead to taunts and insults they don't pick up on.

Many students seem hesitant to point out if their peer in special education is doing something socially incorrect, without noticing it, she said. General education kids might not want to correct their peer, worrying it could hurt their feelings. But in her experience, those little "corrections" turn out for the better.

"I hope that spreading awareness can lead to kids being more understanding and accepting of differences," she said.

Cleo Krejci covers education for the Iowa City Press-Citizen. You can reach her at ckrejci@press-citizen.com.

This article originally appeared on Iowa City Press-Citizen: Friendship inspires Ankeny, Iowa, teen to write about autism, anxiety