Carolyn Brazil is a second year student in the art therapy and counseling masters program at Lesley University. Her research this past year has examined autism spectrum disorder and how to use art therapy with this population. She has worked with children who live with autism spectrum disorder and will continually work with these populations in her future internship and practice.
Carolyn Brazil is a second year student in the art therapy and counseling masters program at Lesley University. Her research this past year has examined autism spectrum disorder and how to use art therapy with this population. She has worked with children who live with autism spectrum disorder and will continually work with these populations in her future internship and practice.
Intro/Outro Music provided by Half Moon Island:
https://halfmoonisland.bandcamp.com/
Jeff 0:05
Welcome to the interdisciplinary investigations podcast. I'm your host, Jeffrey Perrin, and we're recording from the WSCA podcast lab in Portsmouth, New Hampshire. In our first season in this podcast, we're focusing on the subjective and phenomenological experience of listening. The foundation of our investigation focuses on making sense of the world through the sounds and lack of sounds that we encounter in our daily interactions. How do we hear these sounds? And how do we create meaning from them? And how does listening help us understand the world and our place in it? So during this inaugural season, we're joined by educators, therapists, artists, musicians, scientists, contemplative practitioners, scholars and activists, who've tracked the importance of careful and engaged listening in a world that seems to enable scattered attention, disengagement, and displacement. Their insights reveal great lessons in the stories of sound. And today, we're joined by Carolyn Brazil. Carolyn is a second year student in the art therapy and counseling master's program at Lesley University. Her research this past year has examined the autism spectrum disorder and how to use art therapy with this population. She's worked with children who live with autism spectrum disorder, and will continually work with these populations in her future internship and practice. And today, she's going to be sharing with us some of her stories in relating with folks who struggle with hyperacusis. Carolyn, thanks so much for joining us today.
Carolyn 1:40
Yeah, thank you so much for having me.
Jeff 1:44
We just want to learn a little bit more about your work before we dive into the topic of hyperacusis. Your background, beyond what you've done in your art therapy program at Lesley University. How did you come to this field? What did you study as an undergrad? Tell us a little bit more about yourself.
Carolyn 2:00
Yeah, so as an undergraduate, I studied art history and Fine Arts at Brandeis University. And prior to that, I do have a background of doing informal art therapy and volunteer work abroad, which led me to the art therapy field because I really do believe in the power of the arts and healing, and helping those who endure trauma as well.
Jeff 2:29
Great. And today, we're gonna be talking about hyperacusis. So what made you before we get into the the ins and outs of what this means and what it entails? How did you become interested in this topic?
Carolyn 2:43
I'm very interested in working with those living with autism spectrum disorder, and working with these populations, specifically, within the United States, as well as eventually abroad, hopefully. And in my past experience, when working with these populations and interacting with them, I have consistently notice a strong reaction to surrounding stimuli and sounds with the children that I have worked with that, you know, I perceive these reactions to be subtle, and not so loud. So it's been interesting to just firsthand see and understand how people respond to their environment differently. So I have observed that those with autism had a strong and heightened awareness to sounds. And even sometimes they would scream or shout when they heard, even say, an alarm clock, that we may perceive to not be loud, but people would just be itching themselves or screaming and it was so sharp to them, due to their sensitivity. So I found that very interesting. And in my future practice, I will be working with these children who do have hearing sensitivities within the autism community. And I felt genuinely curious about what causes these individuals to react in this way.
Jeff 4:20
And Carolyn, this is such a welcomed perspective and insight because in this series, we've been talking so much about engaged listening, and contemplative practice and you know, the power of a lot of sounds that we hear in the natural world. And we haven't really gotten into the fact that, you know, some of us hear sound very differently. And so, for those of us who are very unfamiliar with the world of hyperacusis, how would you describe it?
Carolyn 4:48
Based on the research that I've done in my understanding of it's a sound disorder, where the way that one perceives sound is distorted compared to the average person, so someone who's suffering from hyperacusis, they may appear based on their even body language facial expression, or the way that they react to a range of sounds this appears overly sensitive compared to the average person, someone may find noises, unbearable and excruciating, someone describe it as a knife cutting inside of their ear. So these very sharp, heightened reactions to noises. And so our ears sense sounds as vibrations with different frequencies. And if someone has hyperacusis, our brains, exaggerate or confuse some of these vibrations. So if you do receive the same signals as someone else, the brains will respond differently to them. So this, these differences in responses is what causes the discomfort for someone with hyperacusis. To begin with, and this sharpness of sounds, it's basically a collapse of loudness tolerance. And these these are sounds that are not described as say threatening or uncomfortable by, say, the average neurotypical individual, but every sound just feels so sharp, and painful to receive. There's no middle ground to this, it's just all sounds, which can be very overwhelming. And just to describe the prevalence of hyperacusis, it's very rare. I've never met anyone with it. I've met people who are sensitive to sounds, but only one in 50,000 people are affected. And another co occurring sound disorder that often comes hand in hand with hyperacusis is called tinnitus, which can best be described as a ringing or buzzing sound in someone's ears. It's a pretty common problem affecting about 15 to 20% of people than especially prevalent in older adults. And tinnitus is also highly prevalent in the autism spectrum community.
And similarly to hyperacusis tinnitus can cause a typical reactions and responses that affects many facets of someone's life. And I just wanted to further talk about some related diseases to hyperacusis that might trigger the hyperacusis or maybe co occurring with it, and that is a head injury. Damage to one or both ears due to medications toxins are an accident. Bell's Palsy which is an infection that affects the inner ear and facial nerve. Lyme disease, Tay Sachs disease which causes muscle spasms and fatality in childhood, migraines, certain kinds of epilepsy, post traumatic stress disorder, surgery on the jaw or the face, and Williams Syndrome. So there are many different oftentimes someone with hyperacusis doesn't solely have hyperacusis rather likely has a co occurring disorder or medical complication as well. I just wanted to talk a little bit more about the biology symptoms and understanding some accounts of hyperacusis. But in terms of the biology, scientists still, they have not concluded on the cause of hyperacusis. There are many different theories out there. The first being that hyperacusis is a product of increased neural synchrony. And when the synoptic structure is reorganized and re distributed, which means that our cells respond to different frequencies at different levels in our central auditory system. And these are this is part of the auditory cortex, as well as sometimes some neurons that would typically respond to sound start to respond to lower intensity sounds. And other theories. Say that hyperacusis could be a sign of problems in our auditory pathways or sound. So an abnormality in our limbic systems, which has been suggested by many researchers and some studies I've examined, and it's even been proposed that the auditory cortex could trigger again more elevated perceptions of sounds. And MRI studies have shown auditory activity in the auditory midbrain, this activity has been elevated compared against how it would normally function. And some MRI scans have also shown that there's some subcortical, and cortical responses to sounds that are shown on these images in subjects with hyperacusis. Some symptoms of hyperacusis include finding quiet sounds comfortable, but maybe ordinary sounds like voices, or you engage in a conversation with someone it's too loud and too distorted. Someone may experience fear, anxiety, social isolation, lack of concentration, and insomnia. And even for some individuals, on some videos, I saw, they said that even doing an interview or speaking their voice, their own voice seems too loud or distorted to them, and say, some sounds that might seem louder, such as say, like a faucet or kitchen appliance or like opening a fridge, like very like some households appliances, those are too sharp and too overwhelming for someone with hyperacusis. So just to even, I guess emphasize that, even within their own house space, that they can't even feel comfortable in their own environment that should feel uncomfortable to the average person. And so yeah, just lastly, the founder of hyperacusis.net says that his symptoms were so severe and his life felt like it was collapsing right before his eyes and in a matter of only a few days, he can no longer tolerate the normal sound of life like conversation, telephone and television, and even his own children that wanted to talk to him or whisper to him or the sound of even turning his head in his sleep. It was just so distressing to him, and it became so life interfering for him. And lastly, I just wanted to talk about the ways in which having hyperacusis would alter someone's life. So moving about, you know, traveling and talking to others is challenging for those with hyperacusis. And oftentimes, your protection must be worn daily, including earplugs or earmuffs, if not both at the same time, if deemed necessary. Many individuals struggle with doing household chores, going to the grocery store, things that we may take for granted in our everyday life that we have the privilege of being able to do are quite challenging for those with hyperacusis. And most importantly, job accommodations can be difficult because most jobs require interacting with sounds to some capacity. And in some cases, patients may be forced to seek for other jobs that don't require as much sound or even try to secure disability with the help of a doctor or therapist. So yeah, I just wanted to emphasize lastly, just how damaging this can be and life changing.
Jeff 13:50
I mean, it sounds as if individuals that that struggle with this, they have to restructure their their entire lives, not not only outside of the home, but inside the home, in their relationships with their partners with their children's probably even with their pets. It sounds just like a real struggle. And I think when we originally started talking about this idea, I communicated that I had suffered a brain injury a while back and certain sounds were very triggering to me. And I just started noticing like when summertime comes around, everything gets louder, right windows are open. lawnmowers come out. All sorts of lawn equipment comes out. That was it was really difficult for me to listen to and I was only you know, luckily my symptoms sort of started to fade over time. So I can't imagine living with this, you know, all throughout one's life. It's just sounds like such a painful experience. Returning back to the individuals that you work with. How does this specifically relate to folks who are on the autism spectrum.
Carolyn 15:01
Studies have shown that hyperacusis is highly prevalent within the autism spectrum disorder community where generally those with autism do experience hypersensitivity to visual stimuli, auditory stimuli, environmental stimuli, really everything can feel overwhelming to them. And this auditory hypersensitivity can cause heightened reactions that do interfere with these individuals quality of life. So, statistically, hyperacusis occurs within about 18% of individuals with autism spectrum disorder. A 2015 report published these statistics and also reported that about over 50% of these individuals also had tinnitus, as well, or some disorder related to tinnitus, such as misophonia. So can be tinnitus, or misophonia. So hyperacusis can affect an individual at various degrees depending on its severity. It can impact someone's emotional well being sleep concentration and anxiety, particularly studies reveal how those with autism, they do have an increased perceptual capacity, which permits them to process the increased amount of cognitive stimuli and information compared to us who are say neurotypical. So when when you're dealing with this and also grappling with, you know, mental health sleep and concentration becomes that much more difficult. And also, those with autism also have difficulties in communication. So it's that much more challenging to one diagnose and b) to treat and to reach them in an understanding way. So, yeah, hyperacusis researchers, many of them have concluded that there needs to be further research done in this area with those with autism since most of the studies have been published in the early 2000s. And that was the mutual consensus amongst the researchers I have read. And also in addition to ongoing research, they propose that they would like to see more genetic testing neuro imaging, and electrophysiological measurements as well to help provide more insight into the diagnosis and treatment of hyperacusis within the autism community and other types of sound tolerance disorders. Lastly, concerning these studies, many researchers who did studies with the autism population. Also, like I said before, found that the behaviors like social avoidance and say, covering ears in many different environments, that these were results of emotional response to sounds be a simulation of the limbic system and the autonomic nervous system. And this is the proposed conclusion. But again, they feel that more studies are necessary to figure out the real cause.
Jeff 18:42
Carolyn, you mentioned earplugs, earmuffs. I imagined noise cancelling headphones as possible ways in which folks can mitigate the effects of hyperacusis. Are there other ways that the effects can be lessened? And is there any sort of treatment?
Carolyn 19:01
Yeah, so there is no treatment. According to the studies that I've read. It's not as simple as just taking a pill. But there are many different I'd say, considering holistic methods to help approach and manage hyperacusis. So one could wear hearing protection in noisy environments, when I say when they're working at home or being around loud music. And this is because tinnitus and noise sensitivity could be exactly exacerbated by certain sounds, but maybe it's not necessary to wear it all the time. It's just whatever the individual feels is necessary. And there's a process in therapy called desensitization, which is when the therapist exposes someone to say a trigger sound, a trigger event or a trigger person that would cause a heightened reaction in someone so desensitization and exposing them to the sound that might feel threatening or sharper intense to someone. And over time, the hope is to decrease and lessen the emotional responsiveness to the sound or any aversive stimuli after repeated exposure. And in addition to that, one could assert themselves and ask people to avoid raising their voice when they speak to someone. So just letting someone know that they might feel irritable or upset by their voice in the most, I say diplomatic and not non offensive way as possible. So just some interpersonal communication skill training could be beneficial. And of course, therapy. I'm a big proponent of therapy in general. And so talking to someone about the symptoms and experience says if anxiety or other aversive reactions may continue, so a psychologist or counselor to talk with and to help identify the factors and influences that could be causing the reactions to allow sounds, medication to help someone sleep could be necessary in the short term to help with insomnia. And just I'd say emotional regulation to sleep can really help those feel emotionally regulated and physically calm and stable. And lastly, there's a type of therapy called tinnitus retraining therapy, which involves someone wearing a hearing aid called a noise generator, which, over time decreases the sensitivity to noise, and the ears can become conditioned to the audible white noise that's going to be played and eventually learn to ignore the noise. So those suffering from hyperacusis may not feel at ease with placing sound to their ear. But this device helps create white noise, which can barely be heard, and eventually help someone face everyday noises in their daily life.
Jeff 22:18
It's great to hear that there are some methods out there that folks can use. And we can only hope that through more research that more that there will be more methods and more possibilities for folks to lessen the effects of of hyperacusis. I just want to close, returning to a little bit of your work as an art therapist, where do you see yourself going in this field of working with folks with autism spectrum disorder? And how do you see your work as an art therapist potentially relating to some of these hyperacusis issues that this population faces?
Carolyn 22:52
For me, as an art therapist, I'm a big proponent of art as a way to ground someone in the moment and to distract from negative thought patterns. And I have created protocols, as a matter of fact, with autism spectrum disorder population, and just I'm still exploring and discovering different protocols and interventions to help ground those with autism in the moment. And to feel, I think, more sensorally secure in life and in different environments. And I want to create interventions and programs to help challenge those with autism, while also helping them just simply be present in the moment and to feel like they belong as well. I'm a big fan of inclusivity and promoting that within my own practice as well. Yeah, it's too early to tell what I'm going to do I just, I just know that I have a real passion for working with those with disabilities and trying to find creative, innovative ways to help them feel like they belong. And to, to and to feel comfortable in many different environments.
Jeff 24:11
You mentioned, potentially working abroad, where do you hope to land?
Carolyn 24:15
I hope to go to Italy and China, hopefully in the future. But first, I think my first stop would be China because I have volunteered with children have autism in China a few times. And I hope to go back and do some work at the orphanage I was adopted from in China and create art therapy programs for those who have disabilities.
Jeff 24:45
Wow, that's fascinating work, Carolyn, and I wish you all the best whether it's in China, Italy, or here in the United States with your therapy practice and helping individuals who suffer with hyperacusis or other related disorders. And folks that are struggling with autism spectrum disorder. So thank you so much for your time. And thank you for all the great work that you're doing.
Carolyn 25:11
Yeah, thank you so much for having me.
Jeff 25:14
Thank you for listening to the interdisciplinary investigations podcast hosted by me, Jeff Perrin. Thank you to half moon island for providing our intro and outro music. Please rate review and check out all of our episodes wherever you stream your podcast. Thanks so much listening.