Into The Spectrum: Students and members of the East community share their often unrecognized perspectives on Autism Spectrum Disorder to bring further acceptance to the challenges they face

A then-10-year-old Lily Lawrence was bouncing a ball at recess, walking on her toes. She was completely alone.

Being adopted from an orphanage in China only five months prior to her first day at Marian Hope Academy in Blue Springs, Mo. in March of 2014 was already a struggle for her. Enough to segregate her from the rest of the kids at school. But there was something more to it. Lily and her family wouldn’t know until a year later, after countless doctor’s visits and consultations trying to get doctors to see the signs, that she had autism.

That day, her mother Cara had come by the school to volunteer during recess.

She assumed that Lily had made some friends after a month, but the other kids weren’t even within a five-foot radius of her. Lily couldn’t bring herself to understand the complexities of their conversations — why couldn’t they just be direct? For the first time, Cara saw her daughter how her peers may have seen her — as a lonely, odd girl.

Lily was diagnosed with “moderate” Autism Spectrum Disorder at 10 years old, a developmental disability characterized by a wide range of traits — from deficient social skills to sensory aversions — so diverse that no single mold can define the experiences of each individual on the spectrum.

People on the autism spectrum tend to have wildly different perspectives of life that their peers often don’t understand, junior and ASD-diagnosed Annabelle Reda said. It’s a perspective she urges other students to understand, not just during April — Autism Acceptance Month — but every day of the year. Because for her and thousands of teenagers nationwide, every day is a burning reminder.

But Lily never cared what her classmates thought of her. Even though she wanted so badly to be friends with them, they just didn’t see her in the way she and her family did. While her family sees a giggly, kind girl, her peers see her for her diagnosis.

When Cara asked Lily’s teacher if being alone was normal for her, the teacher thought about it for a second and said, “You know what? It is normal for her.” Lily hadn’t even been on her teacher’s radar.

“The burden is left on [Lily] to figure out the world, but the world doesn’t have to figure her out,” Cara said.

She’s memorized how to respond to certain phrases, something that her family helps her with, so that even the peers who throw food at her in the cafeteria feel more comfortable around her — they don’t understand how she can talk about horses for hours on end. She’s nice to the girls that never invited her over. She still hasn’t mastered sensing sarcasm — often coming home chatting about the “new friend” she made, who was actually making fun of her obsession with anime. 

She’s learned to mask her autism so much that it almost becomes more noticeable to her peers, something her family started to recognize years ago when she would overcorrect her “mistakes.” For Lily, saying the wrong thing at the wrong time turns into often not saying anything at all when in public.

One in 36 children are on the spectrum in the U.S., according to the CDC. As autism has become more understood and diagnosed in the last decade or two, according to University of Kansas Medical Professor Rene Jamison, it’s not unrealistic that in an Instagram poll of 182 students, 18 said they were on the spectrum.

While many students wouldn’t expect the disorder to affect 10% of their classmates, autism is often misunderstood and stereotyped, according to Jamison. As the creator of Girls Night Out, a program that assists ASD-diagnosed and neurodivergent teen girls, she’s heard people comment that someone “doesn’t seem like they’re on the spectrum” or that they “never would have guessed.”

“Some of the perceptions I think [are] that they would have been able to tell [that someone has autism], or they’re going to stand out in some other way,” Jamison said. “I [have heard] people saying things like, ‘they’re not interested in doing something social,’ which I don’t think is true.”

Annabelle acknowledges that autism is more common at school than her classmates and teachers think — the ignorance and judgment of her peers affects her almost daily.

Every day, she walks the halls with headphones on — not to play music, just to cancel out the background noise of hundreds of conversations battling for her attention. Her 504 plan allows her to slip them over her ears during class so she can hear the teacher’s instructions instead of the distracting sound of vents or other students’ music. But classmates aren’t so accepting of her accommodations.

“[Students in the halls] will say things behind my back thinking I cannot hear them because I have my headphones on,” Reda said. “Like really awful things. I’ve had people call me the r-word behind my back in the hallway.”

Her 504 plan also allows her to move seats when she needs to — it’s hard to work when you feel like you’re entirely exposed and under surveillance, as autism can lend itself to higher levels of anxiety. But she rarely does because she doesn’t want the additional judgment that comes with standing up and moving in the middle of class.

Annabelle’s autism diagnosis came this school year when she transferred to East, requiring her to get an evaluation for a 504 plan. Though she knew some things about her were different — she couldn’t pick up on certain social cues — indicating she was on the spectrum, she was never officially diagnosed until now at age 16.

“A typical diagnosis for a girl with autism when they’re young [is] ADHD because there’s a lot of overlap,” Reda said. “I actually have ADHD and autism. But I kind of was marked as having behavioral issues when I was younger, instead of just being [on the spectrum].”

For Annabelle, her diagnosis confirmed what she’d thought all along, finally labeling some of her challenges — textural aversions like the gumminess of meat that made her go vegetarian, difficulty with numbers and — most impactful for her — overt honesty.

It never made sense to Annabelle to mask her feelings behind white lies. If someone asks “do you like my skirt?” and she doesn’t like it, her gut reaction is to say no — but that’s how she’s lost friends. She’s learned the hard way to repress that instinct. Saying “no” has become finding something she does like about the skirt so that she’s not technically lying.

Like Annabelle, Lily is challenged by social cues. It could mean being unable to read someone’s expression, understanding sarcasm or picking up on bullying. 

Growing up adopted into a home with a language barrier already made her transition to the U.S. from China difficult. But being very quiet and unable to easily make friends worried her parents. Finding a doctor to finally agree that something more was going on with Lily was a long process. But for Cara, it wasn’t as hard as hearing her daughter’s diagnosis.

“I knew what that meant for her,” Cara said. “And, because I know her heart, and I knew how cool of a kid she was, and how she does have feelings, the diagnosis both was a relief, but also, it’s lifelong.”

A lifetime of learning the “right” behaviors, of staying quiet so that she can’t get judged for what she says, trying to find people that won’t dismiss her immediately, but rather give her patience and time to foster a friendship.

Adjusting to Lily’s diagnosis was difficult for the entire family, forcing Cara to relearn some of her parenting. Lily hates hugs, which is hard for Cara, whose love language is physical affection. But they have a system now — celebrate when something good happens with some alone time, and then after about half an hour, talk about it together. That’s how Lily and Cara love.

Lily has always been an internal emotional thinker. She almost never cries about anything. Even when she left China after living there her whole life, she didn’t cry. Not once. The first time she did cry was after wiping out while riding her bike down a hill only a few months after she came home from China. 

Cara had been in the home when Olivia, Lily’s sister, came rushing in saying that Lily had fallen. When Cara looked down at the scraped up, badly-bleeding arm, she looked into her daughter’s eyes and saw a mask. She was trying so hard not to show emotion. Only when Cara called out “Are you OK?” with genuine love and care did she know it was OK to cry.

“I cry now thinking about it, because I could see that she wanted to [cry] but she didn’t know that it was appropriate or safe,” Cara said. “So that moment, when she cried, I gave her a huge hug, which then she stiffened so I had to let go, because love feels different to her.”

As she grew up, her siblings would teach her about handling social situations — what may be a wrong or right response to a joke, holding eye contact with her teachers and engaging in small talk when she’s paired up with someone for a class project. Lily memorized all of the “right” answers just like Annabelle.

Since Lily’s younger sister Olivia has started attending East as a freshman, the family has become more aware of some hateful behaviors of Lily’s peers. Olivia has seen people’s looks when Lily gets loud and excited about the latest episode of her favorite anime and tries to explain to Lily what bullying can look like.

But Lily doesn’t really care.

“I don’t really think about it very much,” Lily said. “Like I don’t care what people think. You think what you want — doesn’t matter. As long as it doesn’t affect me, we’re good. There’s some good things and bad things about [autism].”

Even though it’s easy to brush off stigmas or stereotypes, Lily has made a habit of “putting on a show” for other people’s comfort, according to her. She doesn’t like to show weakness. She says that at her house or at the barn with horses is where she truly feels herself. Animals don’t have complicated, indirect and pointless social cues like the kids at school do, and the people at the barn reciprocate her love for talking about competition riding.

Riding, gushing over or just being horses is an immediate release for Lily. It’s one of the things she could have a two-hour conversation about with someone she just met.

When stepping further into the autism spectrum, it’s clear that there’s no one way that it presents itself. Annabelle’s headphones don’t define her. Lily’s love doesn’t define her.

“I wish people would understand that I’m not a pet, or I’m not something to be treated delicately,” Annabelle said. “I’m like a full fledged human being, I’m really no different.”