Misophonia at School: Three Family Stories
“It’s not easy being a student with misophonia”
The educational system we are all encouraged to go through from a mere five-years-old is a tricky one, and we all have our positive and negative memories of spending our childhood in a school. Some of us struggled with academics, sports, and other extracurriculars; some of us felt as though studying was a breeze but still had to fight against other demons. Everyone’s educational journey is different, and misophones are no exception. As someone who grappled with misophonia in my school setting since the fifth grade, I can attest to the difficulty misophonia sets up for its sufferers in a class setting. Students have to deal with in-class snack times, gum-chewing, and a multitude of other repetitive sounds, all while attempting to follow along with their teacher’s instruction so they can succeed in class.
It is not easy being a student with misophonia.
Even so, there is no reason why a misophone should ever suffer in silence. In-school accommodations can be provided for misophonic children who feel as though the use of ear plugs, separate testing spaces, and other amenities would allow them to concentrate and perform better in class. However, the question often isn’t whether accommodations such as these are available, but rather if the school the child attends is willing to provide them to misophones in particular.
I interviewed three parents and their misophonic children, all of which had wildly contrasting experiences with their schools’ opinion of misophonia.
Here are their stories.
Bethany and Lola
“Middle school culture makes appearing ‘different’ really challenging,”
Bethany and her eighth-grade daughter, Lola, live in the Philadelphia area. Lola has dealt with misophonia for most of her life, but her sensitivity to certain sounds escalated in 2022 after her school classes transitioned back to the full-time studies that had been disrupted by the COVID-19 pandemic. The quiet atmosphere of online learning was a blessing in disguise for many misophonic students, so suddenly being thrust back into an educational environment flooded with repulsive, panic-inducing sounds had to be stressful. It certainly was for Lola, who was so distressed by her inability to concentrate in class and the return to the noisy school cafeteria that she sought out a professional evaluation for misophonia at the end of her seventh grade year.
The audiologist she went to soon diagnosed her with moderate misophonia, and she now sees a counselor who, though not misophonia-based, is well-versed in working with children who have sensory sensitivities.
Since then, class time for Lola has still been difficult, but she has tried out different methods to lessen the frustration that comes with hearing her triggers. Her and her mother have not made a formal request for accommodations and are unsure if that is a route they would like to proceed with. Even so, they have occasionally asked permission for Lola to change seats when her classmates are triggering her, and Bethany wrote a letter to her teacher asking if Lola can wear ear plugs in class. Both of these requests were granted. Even so, Lola struggles with asking for help about her misophonia.
“Middle school culture makes appearing ‘different’ really challenging,” Bethany says.
Like many misophones, Lola feels guilty about the flight-or-fight response she experiences when facing a troubling sound. When she was younger, she would often flee from whatever was triggering her misophonia, but as she has grown older, she has been fighting back more against what upsets her; worst of all, she feels as though she is in the wrong from feeling this way. This is simply not true. Those of us with misophonia can in no way control the emotions brought about by hearing our specific trigger noises but, especially in childhood, it can be hard to accept that and not blame yourself.
This guilt contributes to Lola’s nervousness to request formal accommodations. However, her mother Bethany says, “My take on her responses here is that she's struggling, but maybe not currently because of a lack of or willingness for accommodations.” The troubling truth is that there is no way to completely eliminate a student’s struggle with misophonia, though Lola’s use of small aids like ear plugs and seat-switching has helped her to some extent.
Lola says that the most bothersome times in the school day are during tests and quiet class time, when trigger noises are more conspicuous. It is these moments when she pulls out her ear buds without a second thought; her classmates treat her no differently for this, and she even feels comfortable doing so. She is also met with no resistance from her teachers when she asks to use them or switch seats, though she often does not explain why she needs these adjustments.
Bethany believes Lola’s misophonia is, for the most part, kept to herself. Several of her friends know about it, and she isn’t keeping it from any classmates or teachers, but she feels uncomfortable explaining her misophonia for fear of being unable to speak clearly or accurately answer questions about it. Even so, her classmates are understanding about the troubles of their fellow students and are aware that there are accommodations available for those who need them. Bethany, who has volunteered at the school multiple times, says, “Working as a volunteer librarian when Lola was younger, I remember sometimes asking a class when they came in, ‘Is anyone absent today?’ and kids often would say, ‘Oh, so-and-so is here today, but he's in the resource room,’ or ‘So-and-so is going to be a little late because she's with her aide.’ I don't know how much any of them understood the nuances of those supports, but they just seemed to accept them as fact, without judgment.”
When both mother and daughter were asked what they would change about their school’s approach to misophonia, Bethany responded that the school handled things well, but that she wishes the process of pursuing a 504 plan was more straightforward. Lola, on the other hand, says that it would be beneficial for her school to involve itself with, in her mother’s words, “something that was separate from the guidance counselor's space or nurse's office and didn't feel so ‘official’ or create more questions from teachers when requested. A space one could go to decompress/be quiet/be in white noise, etc. This isn't something her school currently has, though it has been discussed at Board of Ed meetings—the idea of ‘small group counseling areas’ or a potential ‘mind body studio’ at the high school.”
Bethany and Lola’s story is a prime example of an average school’s approach to misophonia in the classroom, but there are many schools that are unsure of what to do when faced with such a situation. Mother and daughter Chris and Hannah’s experience with their school is one such instance.
Chris and Hannah
“You have to prove, over and over again, that your student doesn’t respond to all of the interventions.”
Chris and Hannah live in the Oregon area. Hannah is currently in the ninth grade, and her experience with misophonia in the classroom has fluctuated back and forth in terms of the quality of support she has been given from the past three schools she has been enrolled in.
Through fifth to eighth grade, she attended a small private school that went above and beyond attending to the needs of its students. Hannah’s class consisted of only ten or twelve students, so she could be open about her misophonia and kindly ask classmates to stop making trigger noises when she needed to. There were accommodations available for each student as well, such as the ability to move to other rooms when experiencing sensory overwhelm or simply in need of a quiet, safe environment.
Everything changed, though, when Hannah was about to begin ninth grade. Her school did not originally teach students her age but planned on doing so, which led to Chris seeking out district-funded private placement for Hannah’s ninth grade year. Hannah’s psychological state was then evaluated and, though the assessment did not mention anything regarding misophonia, Chris discussed the possibility of misophonia accommodations for her when going over the results with the school district. The school then explained that she and Hannah would have to agree to an individualized education plan (IEP) before they would even begin discussion on misophonia. They also mentioned how Hannah would likely be placed in a special education environment, as they believed her misophonia, sensory needs, and inflexibility were symptoms of autism spectrum disorder (ASD). The district was unswayed when Chris provided a specialized accommodation letter written by soQuiet’s founder, Cris Edwards, illustrating the definition and brain basis for misophonia and continued to suggest that Hannah would have to follow the IEP and special education route before accommodations would be made for her.
Chris has had previous negative experiences with school systems such as this. “My son went to an alternative school that spent the first six weeks teaching kids how to interact with people,” she says. “He didn't need that. He was just sick, being diagnosed with celiac, Hashimoto’s, and hypothyroidism. When it was time for him to leave, they begged us to stay for high school because he was a good influence. He didn't belong there, but they didn't know what else to do with him…I feel like when kids…don't fit into something school officials understand, they get penalized & tossed to special education or even alternative education.”
Chris disagreed with the school’s suspicion of ASD and decided to pursue outside testing offered by the school. She also got involved with an attorney, who unfortunately said Hannah’s needs were a “personal preference” and that the school district would not pay for her private placement. “You have to prove, over and over again, that your student doesn't respond to all of the interventions, etc,” Chris says. “ They have to go through a lot and, in my opinion, it's basically the district's decision or you can withdraw of course, if they feel they've exhausted all options and interventions, without any regard for the emotional cost to the student.
Since then, Hannah has open-enrolled in a new school. It is a general education environment with small class sizes and separate rooms available for students when they need them, and Hannah is doing incredible without any of the mediations her old school claimed she needed to succeed. To this day, she has never been in special education nor had an IEP or 504 plan, and she and her mother are quite pleased with the new district. “The current school is trauma-informed, inclusive, I can't say enough good things about it,” Chris says. “It should have a waiting list. I think it's one of the best kept secrets in the area.”
Unfortunately, there are many misophonic students who have had experiences like Hannah and Chris. It can be difficult for schools to misunderstand misophonia as a legitimate condition considering there is still so much more work that must be done before there are options for diagnosis readily available around the world.
Even so, there are also schools who are considerate towards misophonia and surpass expectations respecting their students. Father and daughter, Michael and Paige, in the Chicago area are part of a loving community such as this.
Michael and Paige
“We know what this is now! Let’s find the local misophonia doctor and get this taken care of. That’s when we realized the quagmire a misophonia diagnosis brings.”
Paige began having issues with misophonia at the end of seventh grade. Her and her father were unaware of misophonia’s existence at the time, so the symptoms she was exhibiting appeared to be related to an anger issue of some sorts. The problem with that diagnosis, though, was that it was unusual for Paige to act out in such a way.
Michael began researching what could possibly be going on with his daughter, and he soon discovered the term ‘misophonia.’ He found an article written by a woman struggling with sensitivity during quarantine, and the moment he showed it to Paige, she realized she was experiencing the very same thing.
The unearthing of misophonia being a real condition is a critical step in understanding many misophones’ struggles. “I thought, great!,” Michael says, “We know what this is now! Let’s find the local ‘misophonia’ doctor and get this taken care of. That’s when we realized the quagmire a misophonia diagnosis brings…Paige was never diagnosed with misophonia by anyone but ourselves until her current doctor. Not one of our doctors we saw in the beginning had heard of it.”
Knowing what Paige was dealing with did not immediately fix the issues she was having at school. It wasn’t long before Michael decided to intervene and speak with the school nurse and counselor. He explained how, at home, Paige couldn’t listen to her father’s voice when he helped her with homework; she would be unable to sleep at night due to panic regarding incomplete schoolwork; she was unable to tolerate the two-minute drive from their house to the school in the morning. He emphasized how Paige was far more worried about her studies than her condition, as she was often taken to school in the middle of a misophonia-induced panic attack and was more concerned with being late rather than how she was feeling.
The school responded to Michael’s plea for help with care and understanding. There was no questioning her condition for its lack of being present in the DSM-5, and all they said Michael would have to do was give them a piece of paper explaining Paige’s misophonia to be added to her file. Michael then discovered another way to help his daughter, a signal system involving setting an index card on Paige’s desk whenever she needed to leave class for whatever reason, as a way of communicating her needs to her teachers. He planned to purchase index cards and a laminator himself but was surprised when Paige came home from school that day explaining her teacher had made her one the moment she suggested the idea.
Even with the school being notified about Paige’s misophonia and the accommodation of her index card in place, Paige was still having trouble in school. In eighth grade, she was struggling with the sound of gum-chewing from her fellow classmates and had to be picked up from school several days a week because of it. Her informed teachers reacted accordingly and set a firm no-gum rule in their classes, though students were not told that Paige was the cause of this new rule. Unfortunately, gum was still snuck into her classes. According to Michael, “The kids are still sneaking gum and eating in class, and one week Paige needed to leave school early four of the five days. Conversely, the next week she stayed four of the five days. In total she has over twenty absences this year, and her formerly straight A’s are now littered with a few Cs. There is not a firm plan in place on how to handle Paige’s missed class time yet. As of today, they began to threaten kids with detentions for eating/chewing gum in class. Paige told me five seconds after the big announcement however, kids were hiding their eating already.”
Michael responded to his daughter’s crisis accordingly. He wrote an email to all of Paige’s teachers detailing a typical night for her in their household. The following is a brief excerpt from the very letter he wrote:
“She spends most of her free time in her room wearing noise-canceling headphones, with white noise machines playing, all to ‘protect’ herself. She eats dinner alone with headphones on. She won’t leave her room or enter a new room without first asking ‘Is anyone eating?’ When she’s at cheer practice, or lacrosse, or CCD, church, or anything else, the same triggers arise. She had to remove herself from a lacrosse game because she witnessed my wife, in the stands, chewing gum. Even on a ‘good’ night we cannot watch TV together, we cannot be in the same room together, we cannot be in the same car together. We have not eaten a family meal together in well over a year. We do not go to movies, parks, vacations, walks around the block, play cards, board games, or video games together. When she is stressed she cannot handle the sound of my voice. This progressed to a point that Paige and I considered learning sign language so I would at least be able to help her with homework when she missed days from school and felt lost. She has a finite supply of energy per day, as we all do. Sometimes the best we can hope for is a few minutes of conversation and a fist bump before bed. Even those moments are removed when Paige has too many incidents in school.”
Michael associates Paige’s misophonia with a child wielding a lighter. When explaining his daughter’s struggles, he has his audience of teachers imagine a random student in their class coming up to them and burning their hand with the lighter, causing them to focus only on the sudden shock of pain the fire brings. The teacher’s fight or flight response would then be initiated but, even if they ran away from the child with the lighter, the student would still be there when they came back. Even worse, more students could start bringing lighters, and the teacher would have to protect themselves at all times, making it impossible to concentrate in the classroom. This, Michael says, is how Paige feels every school day.
Another way he looks at his daughter’s misophonia is relating it to a “noise allergy.” He says that, if Paige had a peanut allergy, she wouldn’t be given trail mix with only a few of the peanuts removed. The same concept applies to her misophonia; reducing only some of the gum-chewing from her class still puts her in the same position of danger she feels constantly, like the noise-equivalent of anaphylactic shock a student with a peanut allergy might experience.
In the email, Michael explains that Paige prefers to fight through her misophonic reactions, but doing so is not recommended as repeated exposure to triggers is far more harmful to misophones than it is helpful. Worst of all, there is no amount of will-power or self-control that a person can exhibit to change their response to trigger noises. This means fighting through a reaction typically means suffering in silence and hoping the trigger ends soon.
“She performs multiple sessions of doctor prescribed ‘homework’ routines daily, goes to bed as early as possible, takes medication religiously, and never questions anything she is asked to do in the course of managing her misophonia. All of this is to accomplish the goal of staying in school,” Michael says. “ All of her hard work, all her effort, and she’s still forced from the room when someone chews gum, one thing completely out of her control. She cannot possibly do more on her own to overcome this. Removing gum chewing isn’t going to cure Paige, but it will allow her to simply stay in the room. It gives her a fighting chance to put all of her hard work in therapy to use, and carve out a ‘normal’ teenage life.”
Michael’s email was met with teary responses from Paige’s teachers. The issue in Paige’s case up to this point seemed to not be with the school administration itself, but with Paige’s classmates’ lack of knowledge regarding why their teachers were placing such strange rules in class. It was then that Paige resolved to take matters into her own hands.
She decided the time had come for her to be open and honest with her classmates about her misophonia and what she goes through on a daily basis. The vice principal of her school then suggested they prepare a misophonia awareness week at the school, and Paige was determined to be as involved with it as possible.
Michael contacted soQuiet’s founder, Cris Edwards, and asked for assistance with preparations for the occasion. Together, they came up with an official misophonia color, poster designs, and a text-to-donate number, to name a few, and soon misophonia awareness week was under way. The school’s morning announcements listed facts about misophonia, and each grade level hosted misophonia-related trivia during their lunch period. Her teachers sat down with her, listened to her story, and offered to move her seats in class. All these activities led to the finishing event, in which Paige stood in front of her entire eighth grade class and revealed her misophonia diagnosis. “I was not nervous at all because I knew I was doing the right thing and helping people to become more aware of it. Most students were understanding and supportive,” Paige says.
After all of her hard work, Paige still struggles with her misophonia in a school setting, but so much positivity has been added to the world due to her actions. Not only has she become more confident, but she has given so much to the cause of misophonia awareness. She has even affected people outside of her school, including a woman who discovered Michael’s Facebook post about the fundraiser and realized she, too, had misophonia, as well the daughter of one of the school’s staff members who, after hearing all about the misophonia awareness week, decided to write a report on the condition for her college coursework. Even Paige’s mother’s coworker was affected, as she gathered the courage to reveal that she also has misophonia but has never told anyone before now.
The staff at Paige’s school, and her parents, never doubted Paige for a moment. She is considering making misophonia awareness week a recurring event for her school and also plans to pursue a science field to help people like her.
Conclusion
Each misophone has their own story with their own unique challenges, but I believe the aforementioned three accounts of misophonia in the school setting attest to the bravery and inspiring nature of the new generation of misophones. As misophones, many seemingly everyday activities are difficult for us, but still we persevere. We continue on, and we push through to accomplish what we desire.
As the years of misophonia research go on, I’m excited to see the school environment become a safer place for misophonic students; I truly believe there will one day be a future in which every misophone can learn without struggle. Until then, we must continue to provide awareness to those who are unaware of our pain so perhaps that future will become a reality for the betterment of us all.