Sound Sensitivity is Common for People with Autism: Here is Devin Flagg’s Story

Sound sensitivity is common among people with autism spectrum disorder (ASD). According to the Journal of Autism and Developmental Disorders, “the reported prevalence of sensory sensitivities in people with ASD is high [from] 60 to 96%.”

Devin has always struggled with sensitivity to sound. He was diagnosed with autism by TEACCH at the University of North Carolina, Chapel Hill when he was about 3 years old. Before his autism diagnosis, Devin struggled with speaking and thinking clearly, controlling his body, and extreme pain when he ate certain foods. It was his food sensitivity that triggered his diagnosis.

When he would eat certain items, the pain in his abdomen would be so extreme that he’d scream and double over. To show his reaction, his mother, Deborah, filmed him eating a slice of pizza. After viewing the video, his doctor, a metabolic specialist at Duke University, referred to it as “the fatal slice of pizza” because of Devin’s extreme reaction. Devin was diagnosed with autism and a gluten and casein allergy, which caused his adverse reaction to pizza.

Twenty-five years ago, it was harder to find gluten and casein-free foods, so his school lunches received some odd looks. But Devin’s sensitivity to sound was even harder to manage. His parents, Deborah and Brian, also didn’t realize just how sensitive his hearing was. Though looking back, Deborah says there were signs.

“When he was a baby, he would say, ‘Plane, plane,’ and then point at the sky. We would look at the sky and see nothing. Then about 10 minutes later, a plane appeared. We just dismissed it as a coincidence,” says Deborah.

Then when Devin was in 3^rd grade, Deborah and Brian got a call from his principal. Deborah assumed it was some behavior issue related to Devin’s autism. But when she arrived at the principal’s office, she was surprised to see Devin’s music teacher, instead of Devin.

The teacher said, “I’ve never had a child like Devin. He looks so miserable in class, like he’s in pain. And I can’t in good conscience keep making him come to class.” Devin stopped taking music class.

“He was giving us the clues, but we just didn’t recognize them,” says Deborah.

Then this past May, Devin, Deborah, and Brian took a trip to Mount Rushmore. May is off-season for the historical landmark. There weren’t many people there, and there was no piped-in music or loud announcements.

“We noticed how much more relaxed and social Devin seemed than usual. He was engaging in conversation with complete strangers. It was an ‘a-ha moment’,” says Deborah.

Though they had taken Devin to audiologists before, Deborah and Brian didn’t think they were doing the right kinds of tests for Devin’s sensitivity. Deborah asked around for an ear, nose, and throat doctor who thought “outside the box.” Several people recommended Dr. William Garvis, a board-certified otolaryngologist — an ear, nose, and throat doctor — and a skull-based surgeon.

After doing a CT scan this past August, Dr. Garvis diagnosed Devin with superior canal dehiscence syndrome (SCDS) in both his ears. John Hopkins Medicine states, “Superior canal dehiscence syndrome (SCDS) is caused by an abnormal opening between the uppermost semicircular canal in the upper part of the inner ear and the brain…With a thin area or opening in the canal, sound can ‘leak’ through and reverberate in the brain. In addition, the vibration of sound can move the fluid in the canal.”

In other words, Devin has incredibly sensitive hearing. Low-frequency sounds are greatly amplified for him. Dr. Garvis referred to Devin as having “exquisitely sensitive ears to sound.”

After he received his diagnosis, Devin says he felt “like a youngster in a candy store” because he was so excited to have an answer. For Deborah and Brian, the diagnosis was also a relief and an explanation for many of Devin’s behaviors.

SCDS can also affect a person’s balance. Devin often has trouble standing up from a sitting position. He says he walks like a zombie to keep himself from falling. He also deals with a slight ringing in his ears. Deborah also says Devin experiences exhaustion when he’s around a lot of noise, for an extended time.  

People can have surgery to repair superior canal dehiscence, but Devin isn’t sure that he wants to do surgery. In the meantime, he plans to continue to wear his “gun range headphones” and his 3M construction-grade earplugs. He also uses Ear Ease when he’s on an airplane, which helps alleviate pain from pressure during ascent and descent.

More research needs to be done on this rare condition; it’s typically diagnosed in concussion patients. But at least one study suggests it occurs more often in people with autism. According to the National Library for Medicine, “Superior semicircular canal dehiscence was found to be more common in ASD children with auditory hypersensitivity (29%) by means of high-resolution CT scan than the reported (14%) in normal pediatric population by other investigators.”

Serena Tritschler (Devin's sister), Deborah Gee-Tritschler, Brian Flagg, and Devin Flagg

Despite his challenges, Devin graduated with an associate’s degree in accounting from Dakota County Technical College and a bachelor's degree in accounting from Metropolitan State University in December 2021. Devin credits some of his success to the help he has received from Fraser Career Planning and Employment (CPE). Fraser Assistant Program Manager of CPE Julie McKibbins helped Devin create a one-page profile to raise awareness about his autism and help his professors at Dakota County Technical College understand his learning style. McKibbins also helped him make his first resume, which he has been using as he searches for an accounting position.

Dealing with his “exquisitely sensitive ears” is hard, of course. But more challenging, Devin says, is how it limits his ability to attend social events because of loud music or other high-pitched noises. Ringing bells, whistles, and hand dryers also sound incredibly loud to Devin, as does piped-in music in places like restaurants and stores. Many people also lack knowledge and understanding about sensory sensitivities and understanding about other accommodations people with autism might need.   

“Autistic individuals perceive their environment/reality very differently compared to neurotypical individuals, and it creates a gap that has been preventing autistic individuals from being able to prove that they can live and work just as the neurotypical individuals, with proper modifications to their environment,” says Devin. “This gap has been left unchecked for far too long. Our society must strive to aid individuals with autism by being more open-minded, and seeing autism as a valuable asset rather than perceiving it as a defective liability.”