Sarah’s ‘village’: Support helps KU student with Asperger’s reach diploma

Frank Barthell, right, and his daughter Sarah Barthell greet faculty members in Memorial Stadium during KU commencement on Sunday, May 17, 2015. Sarah, 33, who has Asperger's syndrome, received a degree after many years of classes. Frank, who works in KU's marketing department, joined her for the processional.

Sarah Barthell’s Kansas University graduation day fit the mold.

She walked down the hill, got a sunburn on her nose. Her parents threw a backyard party, and her friends, grammy and third-grade teacher all came. There was cake, and way too many beans.

Up in the stands, her mom cried when she spotted her stepping onto the football field in her cap and gown.

That’s when it hit her, Susan Kraus said: Sarah’s really graduating.

Her daughter’s path to this day did not fit the mold.

Sarah, 33, has Asperger’s syndrome, and she’s been working toward her KU degree over the course of more than 10 years.

“She just persisted, persisted, persisted,” Kraus said.

In addition to Sarah’s determination, her parents credit what they call her “village.”

Frank Barthell, right, and his daughter Sarah Barthell greet faculty members in Memorial Stadium during KU commencement on Sunday, May 17, 2015. Sarah, 33, who has Asperger's syndrome, received a degree after many years of classes. Frank, who works in KU's marketing department, joined her for the processional.

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For Sarah, that has not been dorm-mates, co-workers, sorority sisters or fellow students she studies with. Just as they have since she was a baby, Kraus said, Sarah’s developmental delays and difficulties with social interaction imprinted her KU experience.

That’s partly why Asperger’s and other autism spectrum disorders are called “invisible disabilities,” Kraus said.

Sarah walked down the hill with her dad — Frank Barthell bought a cap and gown to blend in.

Overwhelmingly, guests at her graduation party were people who helped her somewhere along the way.

One was a proud Barb Schwering, an occupational therapist turned family friend who coached Sarah on her motor skills when she was a small child.

“It’s a story of a person and a family that just keep moving forward,” Schwering said, “never not expecting Sarah to do what she wanted to do, just, ‘How do we make it work?'”

•••

At KU, making it work in Sarah’s case also involved villagers from the university’s Academic Achievement and Access Center.

The department provides support for students with physical and other disabilities.

Disability specialist Juliette Loring said KU’s Autism Spectrum Program has about 25 students participating, though she knows there are more — of varying degrees of functioning — at KU who aren’t in the program.

Typically these students are “brilliant” in their area of passion, Loring said. But they struggle with communication and “academic details,” she said, things like task management or reading a syllabus that are critical to making the grade.

“We provide access,” Loring said. “So if a student who’s a wheelchair user needs to get into a building they go up a ramp. If a student who had poor dexterity needs to write, they either use some sort of software or they have a scribe.”

“Same material, same stuff, same requirements. It’s just that we provide the bridge.”

Students with learning disabilities must meet the same requirements as everyone else, Loring said, and if they do they walk out with the same degree.

Sarah’s degree is a bachelor of general studies in history.

Her favorite KU class was British history.

“That’s what I’m fascinated by,” she said, explaining that’s why she loves the TV show “Game of Thrones” and easily ticking off landmarks, medieval royals and even some of their grisly deaths.

When recounting her college and volunteer work timeline, Sarah cites the month, day and year she decided to enroll at KU after a few years away from school — “my lost years,” she calls them — and when she started volunteering at Operation Wildlife — Dec. 15, 2006.

•••

When Sarah was a baby, Asperger’s wasn’t in the diagnostic manual and few had heard of it, Kraus said.

When Sarah was diagnosed years later with an autism spectrum disorder, a therapist told Kraus that some such children “even finish high school.” She took a test in grade school and got a score indicating she was mentally retarded, Kraus said, but took the same test again with an administrator who engaged her enough to actually answer the questions, and her score came back too high for a special needs program.

School, especially middle school when kids teased her and called her names like “robot voice,” was very difficult for Sarah, Kraus said.

Sarah took some community college classes early on but later insisted on going to the “real” college she’d grown up loving, Kraus said.

Her parents told her, “We’re not going to make you do this, but if you want to do this we’ll do everything in our power to help you achieve it.”

Early on, Kraus said, it was “iffy.”

But Sarah keeps growing and improving and hasn’t stopped yet, her mother said.

When she first moved out, a couple special education graduate students lived with her as roommates and helpers, and she now lives in her own place.

At KU Libraries, where she was a student employee for years, Kraus said, Sarah was never the person at the front desk interacting with everybody, but she worked slowly and steadily to complete all her tasks.

At Operation Wildlife, her training took patience and “investment” on the front end, but she’s been steady and reliable since, Kraus said. ?Fellow volunteers said Sarah’s fearlessness with feisty raccoon weanlings particularly impressed them.

The way Sarah’s gifts and challenges intertwine is complex.

“This is somebody who reads The New York Times every day,” Kraus said. “You can’t fit her in a box.”

•••

With Sarah graduating, her parents are a little worried that a big part of her village is going away.

Completing her coursework has been part of Sarah’s identity for years.

She will keep volunteering at Operation Wildlife but also will need to find a part-time job that’s a good fit for her. They’re still looking, Kraus said, adding that if she can’t find one she expects Sarah to up her volunteer hours.

“She’s not going to sit around,” Kraus said.

Barthell, who works in KU’s marketing department, said his job duties largely involve convincing people that KU changes lives.

Funny, he said, that’s the case with Sarah.

“It’s exactly what this university did,” he said. “It’s helping her reach her potential.”