With guidance from pediatric audiologists—in collaboration with school-based professionals—children with sound sensitivity can resume productive lives, uninterrupted.
By the time parents of children with a decreased sound tolerance (DST) disorder reach a pediatric audiologist, they may be at their wits’ end. Their child goes to the nurse’s office several times a day because the classroom noise hurts their ears. Or their child hides in the bathroom during classes to escape sounds like gum-chewing, typing, or coughing—noises that may seem innocuous to peers, but trigger discomfort and negative emotions in their child.
Alternatively, their child fears that they might hear certain sounds, so they bolt from the classroom, even though they tolerate other loud sounds without difficulty.
A child’s sound tolerance problem is stressful for the whole family. Attending a sports event or a parade, or even just going to the grocery store, can be wildly unsuccessful, with public meltdowns and parental anxiety about the child’s discomfort.
When DST issues emerge, families are likely to seek help first from the child’s pediatrician or primary care physician. If the sensitivity issue occurs mostly at school, the child’s teachers and/or school IEP team may flag it and involve the child’s family. Either way, a child’s abnormal responses to sound usually prompt a referral to audiology. However, audiologists who receive these complex cases may have limited time for taking an extensive case history and evaluating these children. Further, audiologists may not necessarily feel equipped to diagnose them and make recommendations for management.
How can we help these children succeed after a diagnosis?
Prepping providers
Faced with these challenges, in 2020 our audiology program at Boston Children’s Hospital developed a program for tinnitus and DST issues. First, we coordinated specialized training for a subset of the audiology staff, including a tinnitus retraining therapy (TRT) course and a tinnitus management course. We created a new 90-minute visit type called “Tinnitus Evaluation” (TinnEval; used for any presenting complaint of tinnitus or DST), and a decision tree for our schedulers to book these patients for the correct type of visit and provider.
Putting a TinnEval appointment in the schedule prompts our system to send an electronic questionnaire to the family to fill out before the appointment. Once complete, it is uploaded to the patient’s medical record. This way, information about which sounds create a problem, the child’s reaction to those sounds, related health history, education setting, and, if applicable, education plan (IEP or 504) are available for the audiologist’s pre-appointment review. This reduces time typically spent taking an extensive case history, giving the audiologist a head start on planning diagnostic tests and developing recommendations for management.
Distinct, yet overlapping
Our audiologists typically identify three types of DST disorders. Although hyperacusis, misophonia, and phonophobia can co-occur, each has unique characteristics and requires a different management approach. At the same time, these disorders activate similar parts of the brain when the child reacts to sound.
Hyperacusis is a condition in which, across many settings, “multiple commonplace sounds of low or moderate intensity are perceived as excessively and uncomfortably loud, or cause pain.” Hyperacusis may not be worrisome in a 3- or 4-year-old who blocks their ears in a crowd, for example, as they will likely grow out of this reaction. But when these behaviors continue or present at older ages, or when they persist into kindergarten, the child and family will need help with management. TRT-based counseling and sound therapy, and—if needed—cognitive behavioral therapy (CBT) are all helpful to address and manage hyperacusis.
Phonophobia is a condition in which problem sounds provoke an immediate reaction of fear and anxiety. Children with phonophobia actively avoid the feared sounds, and even stay away from situations in which those sounds might occur. The fear and anxiety the child experiences are not proportional to the actual danger posed, and their reaction is more than would be expected for the child’s developmental levels (see sources). Phonophobia is best addressed with CBT intervention.
Misophonia is a neurobehavioral disorder that causes nervous system arousal (fight-or-flight response) and negative emotional reactions when the person hears certain sounds. Reactions often involve annoyance or irritation, verbal aggression, and avoidance behavior.
Misophonia is a spectrum disorder that can be mildly or severely disruptive to the child. The severity level may be related to other factors such as anxiety conditions, depression, or neurodevelopmental disorders. Most commonly, trigger sounds are associated with noises made by other people when eating and breathing, including chomping, crunching, slurping, bubblegum chewing, lip smacking, sniffing, throat clearing, and snoring.
Another problem source is repetitive mechanical noises, such as keyboard tapping, clock ticking, foot tapping, and faucet dripping, among others.
As evidence-based treatments for misophonia do not yet exist, management centers on developing coping skills. Recommendations for the child include educational accommodations to reduce disruption of the child’s school day, behavioral health therapy to develop skills to improve response patterns to triggers, and layering of sound through ear-level sound generators or other sources to reduce the audibility of trigger sounds.
Sophia’s sound sensitivity
To illustrate the kind of sound sensitivity case we typically see in our clinic, we share the hypothetical case of 9-year-old Sophia*, who attended a private school in the Boston area. Confident and relaxed, Sophia knew all her classmates and found comfort in her daily routine at home and at school. With her older siblings off at college, her home environment was mostly quiet, except for when she practiced cello or her dance routines to music.
However, as Sophia and her parents walked the hallways on back-to-school day, a rambunctious new student crept up behind her and screamed—suddenly and loudly. The piercing noise out of nowhere startled and frightened Sophia. Visibly wary of this student, she became hypervigilant. She tensed up when she heard the student speaking in an adjacent classroom and was unable to focus on classroom instruction or her schoolwork.
Even outside of school, sounds that previously weren’t bothersome now seemed painfully loud. The leaf blower in her neighborhood made her run into the house. The bus’s squeaking brakes made her cry. She tried to practice cello, but the high notes caused her pain. She could not listen to her dance music. Her alarmed parents tried to help by giving her a set of ear-defenders to wear when she went outside the house. But Sophia had become so noise-averse that she refused to attend school. Her parents had no choice but to keep her home for several weeks as they searched for solutions.
Diagnosis and treatment
Sophia and her family contacted our program after consulting with an otolaryngologist and receiving a referral. Her audiological results, including DPOAEs (distortion product otoacoustic emissions), were normal bilaterally. However, due to Sophia’s discomfort, we did not attempt middle ear muscle reflexes and LDLs (loudness discomfort levels). She would not allow word-recognition testing at any intensity above 35 dB HL. Sophia showed discomfort and pain associated with everyday sounds of low or moderate intensity that would not bother others. This history and her behavior during audiological testing were consistent with a diagnosis of hyperacusis. We also diagnosed phonophobia because she became stressed when she thought about the other student and the sounds they might make; hearing any sounds from that student caused immediate fear.
We started our audiology intervention, administered across four total appointments (including the initial one with the evaluation), with counseling on hyperacusis and phonophobia. We next moved to accessible TRT-based counseling for Sophia and her parents. We also recommended sound therapy for Sophia,consisting of pleasant, steady, non-intrusive neutral sound played at school and at home, including at bedtime and through the night. Although we fit some children with ear-level sound-generator devices, a tabletop sound source was appropriate for Sophia.
In addition, we rounded out her treatment with interdisciplinary support. We referred her to a psychologist for cognitive-behavioral therapy, including a gradual and fully supported exposure program to address her phonophobia and the underlying anxiety contributing to her hyperacusis symptoms. Another referral sent her to an occupational therapist to give her tools for physiological self-regulation.
We advised the family to reduce Sophia’s avoidance of sounds via earmuffs or staying home, and to provide her with a sound-enriched environment (such as constant sound therapy, opening windows for environmental sounds, music, avoiding quiet). Sophia has done well with the tools and strategies provided to her, showing steadily increasing tolerance for her auditory environment at school and outside of school.
School collaboration
Other children we work with, however, need us to provide more direct liaising with their school for an accommodations-based approach. In these cases, we consult with the child’s educational team to explain the child’s DST disorder and suggest ways to minimize its impact on their school day. We can consult by attending an IEP meeting by Zoom, providing a letter requesting a 504 plan, talking to school-based professionals (including speech-language pathologists, educational audiologists, and psychologists), and sometimes supporting a student via our Sound Outreach to Schools (SOS) program. Developed by our hospital, the SOS program delivers a full spectrum of educational audiology services to children with auditory disorders in our local schools.
An example of our school liaising is our work with Chris*, who is autistic and a freshman in high school. Chris and his mother came to our clinic because his strong aversion to the sound of gum chewing was exacerbating his already difficult transition from middle to high school. His family members had already attributed his aversion to misophonia, so they’d long stopped chewing gum around him. In addition, his middle school had prohibited gum chewing, so DST had not previously disrupted his life. That all changed, however, when Chris moved to a high school that allows students to chew gum.
At least one peer chewed gum in most of Chris’ classes, driving him to distraction and triggering numerous angry outbursts. In response, the school administration pressured his family to find him a different school placement, but he and his mother objected. They wanted him to stay in his current high school, so they sought our help. His hearing tested within normal ranges, and he showed no loudness discomfort symptomatic of hyperacusis. We reported to his family that, just as they’d suspected, his sound tolerance issues were consistent with misophonia.
We provided the family with a detailed report stating that Chris’ symptoms were consistent with a diagnosis of misophonia, and recommended that related accommodations be added to his school 504 plan. The family had already been working with the school to promote staff understanding of their son’s sensitivities, and our documentation bolstered those efforts and spurred the school to take action. For intervention, we recommended allowing Chris to leave class as needed to calm himself when triggered; to take tests in a separate room; to wear headphones in class; and to access the curriculum online or in other alternative ways in cases of extended classroom absence.
But there was another accommodation that would usurp all these previously listed ones—really the only one Chris needed: a gum prohibition. And so it was that, with our urging, the school administration agreed to ban gum chewing in class, without identifying Chris as the reason (though this likely wasn’t a secret, given his previous behaviors in class). The ban helped Chris become more productive and comfortable in school. The outbursts ceased, and he was able to refocus and get back to learning and making good grades. Now he looks forward to graduating from his hometown high school in a few years.
With appropriate accommodations and guidance from pediatric audiologists—in collaboration with other professionals and school personnel—a decreased sound tolerance disorder doesn’t have to compromise a child’s academic success, social activities, or family life. For those with DST, it goes beyond finding the right diagnosis. Pediatric programs like ours are working to equip these children and their families to become more productive and comfortable in a sound-filled world.
