Misdiagnosis?
Our Story
Sound Sense was created out of a cross-country connection between a mom and an audiologist. In 2012, Kate Lynn had an online discussion with Dr. Rachel “Rae” Stout about her pre-teen daughter and her difficulties with academics, particularly those that required reading, writing, and listening. Following an ongoing battle with her local public schools and their lack of resources, Kate Lynn had recently transitioned her daughter to homeschool and, due to her daughter’s difficulties with communication, she was concerned about her daughter’s ability to ever succeed in a more traditional school environment.
Kate had been looking to have her daughter evaluated for possible Auditory Processing Disorder (APD), but had been unable to find any local resources. Dr. Rae, then on maternity leave with her firstborn son, suggested that Kate bring her daughter from the Southwestern U.S. to Washington, D.C. to be evaluated for APD. She also suggested that Kate consider the possibility of using “low-gain hearing aids” in her daughter’s treatment.
At the time, only FM systems had been used to help children and adults with APD and it was, Dr. Rae believed, a solution that only worked in certain classroom environments - as it could only amplify the teacher’s voice, leaving children with APD unable to easily participate in group work or in situations where a microphone couldn’t be easily handed around. Kate, intrigued with the concept of portable amplification specially programmed for use in a child with normal hearing who struggled to hear decided to take a gamble and fly to the Washington, D.C. area.
As predicted, the auditory processing evaluation, indeed, revealed that Kate’s daughter had significant auditory processing difficulties, including difficulty of understanding speech in noise as well as considerable delays in responding to spoken questions and directions. A very quiet child, Kate’s daughter rarely spontaneously spoke, particularly when in noisy environments. By day two of the use of properly programmed low-gain hearing aids, the girl had become a true pre-teen - eavesdropping and interrupting from the backseat of the car. Within two years, she’d memorized 35,000 words and won her state’s spelling bee. Another few years passed and she taught herself calculus.
Dr. Rachel “Rae” Stout
In April of 2018, Dr. Rae and Kate Lynn decided to start Sound Sense, a Facebook group devoted to low-gain amplification and other technological treatments for Auditory Processing Disorder. Of the first 30 patients with APD to try low-gain amplification, over 90% reported significant benefit from their use. Benefits reported included reduced perception of fatigue, better tolerance of “background noise” and “loud sounds,” increased attention and memory, improved mood, and considerably less difficulty in hearing speech despite the presence of noise. Sound Sense continues to offer six week trials of amplification that includes the use of remote programming, an option that allows for detailed in-home fitting and follow-up in real-world environments. We'd love you to try us out.
Dr. Rachel “Rae” Stout is a clinical and dispensing audiologist with with nearly 20 years of experience (1999-present), sales trainer, and creative innovator with a demonstrated history of working in the hearing health industry. Skilled in Hearing Aid Sales and Service, American Sign Language, Spanish (intermediate), Tinnitus, Counseling, and Clinical Audiology (full-range, including vestibular evaluation and treatment, tinnitus management, audiological evaluation, and hearing aid dispensing). Strong entrepreneurship professional with a Au.D. focused in Audiology from AT Still University
Auditory Processing Disorder can appear as many other issues, including Mixed Receptive Expressive Language Disorder, Developmental Language Delay, Attention Deficit Hyperactivity Disorder (Particularly the Inattentive subtype), Dyslexia, Apraxia, Autism, Listening Fatigue, Anxiety, Sensory Processing Disorder, Articulation Disorders, and even Oppositional Defiance Disorder. Really, how different are these diagnoses? Yes, there are checklists of symptoms, but what do they come from? As it’s nearly impossible to find a site of lesion, you have to look at the initial area of weakness. In many cases, that would be the ability to hear and understand speech as well as its surrounding environment.
To logically understand most symptoms, go as far back as you can, to the actual root cause. Say a child grows up with a fluctuating hearing loss, because of fluid or ear infections. Due to the time they spend not hearing well, they will likely get some degree of auditory deprivation, meaning the auditory and language portions of their brain will not be stimulated nor develop as much as they should. If this isn’t treated in time, this lack of stimulation can lead to language delays, or even lifelong impairments. And what about the frustration levels of that child as they grow up struggling to listen at a distance, in noise, to accents, or with soft speech. What if that child is having to try so hard to listen, that they can barely remember what they’ve heard? People with APD are not unique in their poor working memory.
Sign language interpreters and other translators often have very very poor memory of what they’ve heard, because of the degree of difficulty of their task. It’s much like a computer that’s running low on RAM. If required to run too many tasks, it crashes. What if this child labeled as having a learning disability, when the only disability they actually have is their method of hearing and understanding information is not working well? What if that child is then accused of intentionally not listening and not following directions, when they were listening but just not understanding?What if it takes them a few seconds to understand things and it’s misinterpreted as inattention, cognitive impairment, or defiance? What if they were then punished for misunderstanding directions? Imagine the frustration that could cause over time, as their grades slipped, and their social life was continually impacted by their chronic inability to make use of social cues as they wage war to make sense of the mysterious conversation around them? Meanwhile, the fatigue at the end of each day, or even at the beginning, would creep up and eat away their ability to function academically, or even as a part of their own family. How is it surprising that such a child might lash out? Worse yet, once a child has a reputation of using defiance or violence, the label sticks like glue. And since APD may co-occur with other sensory issues, inability to tolerate changes and texture in food or uncomfortable clothing or bright lights or loud sounds, the language impairment which is often the fallout of auditory processing difficulties would make it very hard for such a child to be able to explain their sensory needs. Depending on the personality of the child he or she might not lash out, but instead go internal, and shut everybody and everything out, attempting to control his or her own environment through routine, strict self-imposed organization, and unwillingness to tolerate unexpected transitions.
Rather than staring at lists of symptoms and diagnosed labels, what would happen instead if we addressed the root of the problem to filter and clarify the speech signal, and decrease the discomfort from unpredictable loud sounds? How can we predict what kinds of benefits a child (or adult) might get from that offloading of sensory overload? From letting a pair of sophisticated computers custom programmed to make sound easier to process and tolerate? There is no crystal ball. However, well over half the time, there is some sort of benefit. Reduction of fatigue, increase in working or long term memory, improved mood, better understanding of speech in noise, at a distance, or in reverberation, reduced problem behaviors, jumps in literacy or other academics, better tolerance of loud sounds, gains in expressive language and articulation, increased access to cognitive ability as reflected in IQ score and overall function. Every one of those benefits listed above have been reported (one or more in each case) by parents in our “beneficial” low gain programmed hearing aid trials. There’s no way to know this technology, if well programmed, won’t work significantly (or WILL), unless it’s tried.
