Softening
stigma

Abe, 22, was diagnosed with Asperger’s syndrome, now incorporated under autism spectrum disorder, around first grade.



Autism renders Abe naive to social cues such as eye contact and body language. It sharpens his anxiety, slows his information processing, amplifies his sense of sound and magnifies his sense of touch.



Several types of therapy, reaching eight hours a week at its peak, helped Abe overcome many of his early challenges.

One woman who helped him shared a phrase that Abe’s family now repeats often: “We’ll win with what we have.”



Abe practiced writing with a pencil at the bottom of a box of sand to build up muscles in his hands. He didn’t understand hugs until his dad broke them down with him.

When pressed, health professionals told Abe’s parents that a kid like him wouldn’t go to college. If anything, he’d go to a small school with ample services.

“I think they were trying to be helpful in lowering our expectations,” his dad Jonathan Shapiro said.

His parents wouldn’t accept those limits. They decided to treat Abe like his twin sister Sarah, who doesn’t have autism.

Now, Abe is part of a new generation of autistic young adults attending colleges across the country at higher rates than ever. He moved from Los Angeles to Bloomington to do it. He’s on track to graduate in May. He’s serving in student government. And he’s fallen in love.



IU’s record of students on the autism spectrum is tracked by the number of students registered for academic accommodations through Disability Services for Students. In the fall, DSS recorded 137.

The true number is bound to be larger. Students with autism often do not need or want academic help. The social aspect of college can be harder — but DSS is designed for the classroom.

Despite an increase in awareness and diagnoses of autism, it still has a stigma. Several students and community members declined to be named in this story or spoke to their difficulty doing so, fearing condescension and judgment by peers, professors and potential employers if they were “outed.”



Abe hopes to soften this stigma.

“Autism spectrum is not something to be frowned upon,” Abe said. “It’s something to be celebrated.”



In his final year at IU, he’s been standing up for people who might not have the bravery or circumstances to call attention to their differences.



Abe doesn’t just identify as autistic. He embraces it.

He acknowledges his limitations, but also recognizes his distinct strengths: an impeccable memory for subjects that interest him, a penchant for organization and honesty because lying is unnatural.

“I try to make it work for me, rather than against me,” he said.



***

In July, an IU senior lecturer of biology was accused of verbally abusing a Bloomington McDonald’s cashier with a disability.

A customer recorded the professor, Claire Nisonger, calling the cashier a “stupid retard” and saying “people like that shouldn’t be allowed in public, much less operating a cash register,” according to Inside Higher Ed.

Abe watched the video on Facebook and was troubled by the false perceptions it displayed. He had to do something.

A few months earlier, Abe and Nejla Routsong, a visiting lecturer in the Kelley School of Business, started an advocacy and community group called the Neurodiversity Coalition at IU to make campus more inclusive of people with neurodevelopmental disorders.



IU offered DSS and Students on the Spectrum, a weekly support group, but nothing that was outward-facing or student-driven.



The McDonald’s incident gave the fledgling coalition a cause to rally around.



Routsong and Emmy Helfrich, Abe’s girlfriend of two years, were the only coalition members in Bloomington. Emmy, who does not have autism, said she was cautious in interviews with local media.

“I don’t think neurotypicals should speak over — speak for — people with neurological conditions,” she said.



Routsong, with feedback from other coalition members, wrote a petition asking IU for three things: to fully investigate the incident, remove the professor from interactions with students and issue a statement on the value of neurodiverse individuals on campus and in the community. 1,500 people signed the petition.

Routsong, Emmy and Abe knew they couldn’t control whether Nisonger learned a lesson. They could, however, work to change culture so something like this didn’t happen again.

IU visiting lecturer Nejla Routsong, sophomore Ben Foley and Bloomington resident Hunter Cullen (left to right) create a list of goals Sept. 27, 2019 at the first governance meeting for the Neurodiversity Coalition at IU. Abe, the founder and president, knows everyone loves a good underdog story. “Our Neurodiversity Coalition is that story,” he said.

Abe’s family never questioned whether he was smart, but he struggled to fit into the K-12 school system and its expectations that students stay on topic, learn the standard curriculum and don’t disrupt class.

He was evaluated for an individualized education program, or IEP, which gave him educational consultants, physical therapists and an in-class assistant.

Abe had no problem with subjects he liked — disasters, history, baseball.

He's memorized World Series winners from 1903-2019 and MVPs from 1955-2019. His high school didn’t offer an Advanced Placement U.S. History class, but Abe spent multiple days a week studying after school with his history teacher and by himself so he could take the exam. He scored a four out of five.

COURTESY PHOTO

Abe stands with his family members at his high school graduation in 2016. Although doctors told his parents Abe would probably never go to college, his mom Betsy Borns said it was never a question. “He’s a miracle boy,” she said.

Abe’s mom, Betsy Borns, tried to manipulate his interests to help him study other topics. She asked his second grade teacher to station a Titanic model in the classroom so he could imagine lessons in terms of the ship. At home, she edited math problems so they’d revolve around the Titanic — and when that got old, other disasters.

Abe frustrated his twin sister at times. Math was hard for her, too. Why didn’t she deserve special problems tailored to her passions? Why was her brother rewarded for behaving in a restaurant if she would do that anyway?

Sarah watched Abe make friends who weren’t really his friends. People took advantage and made fun of him, but he couldn’t detect deceit, so how could he know?

For middle school Abe moved from public school to Bridges Academy, a special needs school where he found “learning had meaning.” His interests didn’t feel awkward or strange anymore. His teachers seemed to care about him. 

“For the first time, I felt comfortable talking with people,” he said.

Abe and Sarah applied to IU together. Their mom is from Indiana, and their cousin is Rabbi Sue Silberberg, the executive director of IU's Helene G. Simon Hillel Center. Abe received his acceptance first.

Sarah’s studying elementary education at IU so she can be the teacher she wishes Abe had. He’s majoring in history.

Going to a big school scared them both. The new sounds, sights and smells intimidated Abe. He felt helpless without a routine.

Abe called Sarah all the time freshman year. He had frequent panic attacks, which continued throughout college as he encountered uncertainty.

But quitting school would be uncertain, too. He doesn't know how he kept going.

***

The Neurodiversity Coalition marked Abe’s first time leading anything.

He streamed the callout meeting on Facebook Live so people who weren’t comfortable publicly identifying themselves could still participate.

“The people here who are nervous about informing their professors, informing their fellow students about what it’s like to have some shortcomings socially, it can be a daunting task,” Abe said to his first audience — eight people in person, 130 views on Facebook that evening.

Routsong, 42, told the audience that she was diagnosed with autism at 37. She doesn’t feel comfortable sharing this with her students. She doesn’t know anyone in her department who identifies as autistic. It can feel lonely.

Routsong encouraged Abe to use the term “neurodiversity” rather than autism, expanding their mission to advocate for people with conditions including Tourette syndrome, attention deficit hyperactivity disorder and dyslexia.

The international neurodiversity movement began in the late 1990s after an Australian sociologist with autism wrote the term in an honors thesis.

Supporters define it as a civil rights movement that advocates for viewing people with autism and other neurodevelopmental disorders as having differences that need to be worked with, not problems that need to be fixed.

Throughout the fall, almost every coalition meeting focused on how to make the university respond to the McDonald’s incident.

After brainstorming ideas for months, Routsong brought an email draft to a November coalition meeting. She read it out loud to the group of eight coalition members sitting around a long conference table in the Distinguished Alumni Room in the Indiana Memorial Union. Abe sat at the head.

Routsong emailed the draft to each person so they could read it themselves, in silence. She sent the message to Provost Lauren Robel the next morning.

***

Abe and Emmy’s first date was April 15, 2017 — exactly 105 years after the Titanic sank. He pointed this out as they approached their first anniversary. Emmy suspects he planned it. Abe says it was a coincidence.

Emmy reminds Abe it’s OK to wear headphones when they go out. He doesn’t like parties much, and neither does she. They like to watch movies, go to local concerts and play trivia.

In December, they arrived about an hour early to “Parks and Rec” trivia at IU Late Nite. They quizzed each other on practice questions, and Abe researched for his nuclear warfare paper. After a few questions, the trivia emcee announced a break for a dance contest. Emmy glanced over her shoulder.

“Abe?”

He unraveled his headphones, scooted back his chair and, his expression serious, walked to the front. 

Abe loves releasing pent-up energy through performance.

“You can be any way you want to be,” he said.

A medley of “Walk it Out,” “Gangnam Style” and “Juju On That Beat” played through black speakers that usually make Abe’s ears ring.

He checked off all the corresponding dances. He dabbed, jump-lunged and ran in place, hitting the beats of the music perfectly. The other three contestants mostly stayed in one spot. Abe covered the space, popping down to the floor and back up again.

Emmy laughed as she recorded a video of Abe on her phone.

Everyone voted for the best dancer. Abe won.

Mel Fronczek | IDS

Emmy and Abe look at each other to confer about their answer to a trivia question at a Late Nite event at the Indiana Memorial Union Dec. 6, 2019. They won "Parks and Recreation" trivia that night.

Emmy thinks people with autism are stigmatized for having intense interests. As a film major, she talks about her favorite movies to anyone who will listen.

“Everybody has a weird passion that they research and know everything about,” she said. For their first anniversary, Emmy gave Abe a piece of coal from the Titanic.

***

The morning of Nov. 13, Abe saw an email from Robel. He learned the professor at the heart of the McDonald’s incident had been suspended.

Abe felt overjoyed.

“Three months of hard work finally came together in that one moment,” he said.

IU spokesperson Chuck Carney confirmed to the Indiana Daily Student that Nisonger was on suspension. In a February email, Carney said she had resumed her duties, which do not involve interacting with students.

“She has worked to address the issues involved in her suspension,” Carney said. Nisonger did not respond to requests for comment. She previously referred the IDS to her lawyers, who did not respond to multiple calls.

Emmy said she went into shock. At first she felt guilty. This professor was punished perhaps because of complaints by Emmy and her peers. Then she remembered.

“She got herself in trouble for saying those things,” Emmy said. “We just held her accountable.”

Abe still didn’t see a public statement from the university, and he wanted more information on the investigation. But he felt the response started a discussion on social perceptions, signaling IU was willing to become more inclusive.

The university had listened.

***

As the semester drew on, and not as many people were coming to meetings as Abe had hoped, he realized his group needed to be fun if he wanted to make more changes.

Advocacy groups such as the Neurodiversity Coalition are not only about tangible successes such as the response to the McDonald’s incident, said Samuel Johnson, president of the Hoosier Alliance for Neurodiversity, a statewide self-advocacy and disability rights organization. They’re about creating places where people with shared experiences can connect.

“The process is the message,” Johnson said. “We’re fighting for inclusion. We’re fighting to have spaces that we can be involved with. But in the act of doing that, we’re creating those spaces.”

The coalition decided on a bowling night at the IMU in December. To make it as accessible as he could, Abe paid for everyone.

He felt anxious.

“This is gonna be a failure,” he thought. “It’s not enough people.”

He didn’t wear his headphones, but he wore a beanie over his ears to stifle the blaring pop music, thumping bowling balls and toppling pins.

To Abe’s surprise, his sister Sarah showed up.

Abe bowled a strike and collapsed, ecstatic, on the floor.

Sarah sat down to tie her shoes.

“Abey, are you winning?” she asked him.

“I’m lucky,” Abe said.

She shook off his response.

“You’re just good, kid,” she said.

She slung her arm around her brother as they set up the scoreboard for the next round.

***

After he graduates in May, Abe wants to continue fighting to eliminate educational inequity and promote disability rights.

He’s considering law school or social work. First, he’s taking a year or two off.

He plans to stay in Bloomington over the summer so he can work and be around the people he loves. He also wants to continue developing the coalition.

As a member of IU Student Government Congress, he’s hoping to pass legislation that would circulate neurodiversity resource pamphlets in residence halls. In April he’s bringing Haley Moss, the first openly autistic lawyer in Florida, to speak on campus.

Abe sees himself as an outlier. He’s not like other people, and he uses that to his advantage. He thinks others should too.

“The greatest disaster would be kids like me being isolated from a world that doesn’t understand them,” Abe said.

He’s doing his best to prevent that.

Update: This story has been updated to attribute information about the July incident at McDonald's.