A DIFFICULT DIAGNOSIS: LIVING WITH HIGH-FUNCTIONING AUTISM AS A COLLEGE STUDENT

ANNIKA WALL, TRUMPET CREATIVE DIRECTOR

Luke Everhardt’s parents, Laurie and Rich, first noticed their son struggled in social situations during second grade. Interacting with his peers was difficult and culminated in Luke screaming under his desk in frustration, Laurie said. 

The Waverly couple took him to counseling, where he was diagnosed with anxiety. However, they saw other signs. 

“He would have fixations about things, and I knew that was one of the things on the autism spectrum, but unfortunately, combined with his anxiety, it seemed like his fixations would be on worry or anxiety and being unable to get out of that cycle of catastrophizing,” Laurie, Luke’s mother, said. “Yes, the anxiety and medications were helping, but he was struggling to move through life as a child normally would.” 

A diagnosis came at age 13.

According to the Center for Disease Control, autism spectrum disorder (ASD) and its subtypes can be identified in children as young as 18 months. Everhardt, now a fourth-year international relations student at Wartburg, was a different case. 

“There was kind of a feeling. I think my parents and teachers definitely noticed some signs and traits that I had that were similar to Asperger’s and the autism spectrum, but it wasn’t until 2012 that I was officially diagnosed,” Everhardt said. “I was reading through some of the characteristics and traits and thought ‘Oh, this sounds very similar to me.”

During his senior year at W-SR High School, Luke completed a project on Asperger’s Syndrome (AS), which now falls under the umbrella diagnosis of autism spectrum disorder.

“I think my parents and teachers definitely noticed some signs and traits that I had that were similar to Asperger’s and the autism spectrum, but it wasn’t until 2012 that I was officially diagnosed. I was reading through some of the characteristics and traits and thought ‘Oh, this sounds very similar to me.”

– LUKE EVERHARDT

AS can be characterized by attention to detail and extreme pattern recognition, difficulty with social interactions, hypersensitivity and uncoordinated movements, according to Autism Speaks, an advocacy group.

In more medical terms, Everhardt was diagnosed with pervasive developmental disorder-not otherwise specified (PDD-NOS), a high-functioning subtype of the autism spectrum, as an eighth-grader at Waverly-Shell Rock (W-SR) Middle School. ASD is a developmental disability that can affect social, emotional and communication skills, according to the CDC. 

When diagnosed with PDD-NOS, Luke’s parents struggled with the decision to inform others. Additionally, Laurie and Rich said they never sat down and had a conversation about the diagnosis with their son. Instead, they focused on coping mechanisms to manage it.

“Looking back, that’s a conversation we could have had and maybe should have had,” Laurie said. “When he hit high school, part of it was this idea of do you put it out there, do you let everyone know and create some preconceived notion or expectation, or do you let him go and deal with situations as we have to?”

The Everhardts also wrestled emotions at home. Some of the most common feelings for parents after a child’s diagnosis are frustration, guilt, anger and anxiety, according to autism-help.org.

“Sometimes I think back and think there were probably some situations where I didn’t treat him like a child with an autism disorder, I treated him like a normal kid and didn’t realize there was some other stuff going on,” Rich said.

Due to the timing of his diagnosis, Luke did not receive autism accommodations in high school and has not received them while in college. To receive accommodations at Wartburg, students are required to meet with Pathways, Wartburg’s student success center, and provide documentation, such as an Individualized Education Plan, to establish the student has a documented disability.

“On the autism spectrum, their needs range from A to Z,” Nicole Willis, Wartburg academic success associate, said. “Students who come to Wartburg on the autism spectrum, it is really their right and responsibility to disclose that they are on the autism spectrum if they want to receive accommodations.”

Academic accommodations could include extra time for testing or assignments, a private room for testing or hiring a confidential note taker through Pathways, according to Willis. However, some of the greatest challenges in college for students with ASD present themselves through social adjustments and overall routine changes.

“I definitely struggled my first few months, finding people I could be comfortable around and just hang around with. It looked like everyone else had found their group of people even though there are definitely people who felt the same way [as me],” Luke said. “That was a little bit of a struggle, just being in a new environment with new class structures and having everything mixed together was difficult at first, but I’ve gotten through it and accustomed to it.”

Regardless, the late diagnosis did not affect Everhardt’s decision to come to Wartburg as a full-time student. He lived on-campus with neurotypical roommates before he decided to live at home due to the COVID-19 pandemic. 

Many of his classmates in his first-year IS 101 course, Diversity and the Media, did not know Everhardt was on the autism spectrum until he declared it in a class presentation on ASD stereotypes in the media.  

“[Having a late diagnosis] isn’t something I’ve thought about very much, but it might have given me a few more answers or understanding to myself,” Everhardt said. “But overall I don’t think it would have made a huge difference.”