Why the Consensus Definition of Misophonia is Important
“A long journey begins with one step.” ~Lao Tzu
I was recently conversing with the parent of a child who is affected by misophonia, an often-misunderstood sensory disorder. The parent had approached their child’s school to request simple disability accommodations for misophonia and the school, as part of that process, was looking for validating information about misophonia. The school was coming up a bit short — more on that in a minute — and that is when the existence of the Consensus Definition of Misophonia, which was published this year [2022], began to shine.
Let’s back up a little.
You may have heard of, or even experience, misophonia, a sound-intolerance sensory disorder which was first named and proposed as a unique condition in 2001 by Drs. Pawel and Margaret Jastreboff. Misophonia is a multi-sensory condition where common sounds and, often, other stimuli associated with those sounds, cause an abnormal and marked reaction in certain people.
How Misophonia Affects Someone
Misophonia is tough to understand and even tougher to communicate about accurately. As a person who has struggled with this disorder for at least 40 years, I confess that misophonia doesn’t make immediate sense, the way, say, allergies or phobias don’t make sense, logically. I consistently clamber to come up with the right words to talk about it with others.
“Misophonia is a disorder of decreased tolerance to specific sounds or stimuli associated with such sounds. These stimuli, known as “triggers,” are experienced as unpleasant or distressing and tend to evoke strong negative emotional, physiological, and behavioral responses that are not seen in most other people.” ~From the Consensus Definition of Misophonia [2022]
In layperson’s terms, specific everyday sounds [and some visual movements] cause certain people, like me, to have an abnormal mental and, sometimes, physical reaction that is like our brain is short-circuiting. This reaction is involuntary, deeply uncomfortable, and stressful. It feels like a combination of panic, anger, and a need to flee, all at the same time.
These sounds, for me, include anything associated with eating [chewing, crunching, slurping, etc.] and other mouth-related sounds [whistling, fingernail biting, etc.]. But, there are many non-oral sounds that cause this reaction in me: pen clicking, fingernail clipping, key or change jingling, certain types of footsteps, knuckle cracking, keyboard and mouse clicking, and so many more. Misophonia very often includes experiencing misokinesia, which is when someone has the same reaction to visual, non-auditory activators, such as seeing someone eating without hearing it [the motions of chewing or eating], foot or leg shaking, fingernail picking, and many others.
It makes no sense, but is very real.
Misophonia can affect everything we do in life. It makes many ordinary activities, from schooling and employment to family relationships and socializing, difficult, if not impossible, and laden with stress and anxiety. People with misophonia often avoid typical activities and isolate as a way of coping. This has a profound impact on our lives.
You can imagine how life might be if, at any time and at any place, something ordinary and benign could cause you extreme anxiety, stress, and overwhelming discomfort. If you are a student, your classes could become much more stressful than they ordinarily are: when another student decides to make class time into snack time, you become unable to participate in the class, unable to focus on anything else that is happening, and you decide that you have to leave to get away from the sounds of the snacking.
This makes getting an education very difficult.
Literally any “normal” activity poses the possibility of being exposed to these activating noises: you can’t see movies in theaters [the popcorn], you avoid social activities [where do you go if restaurants are being avoided?], you quit jobs because the workplace sounds are unbearable [that anxious pen clicker or heavy keyboard typer in the office makes every day feel like torture], you avoid friends and family who cause this reaction, and so on. You become increasingly isolated and begin to wonder if you will be able to do the things you want in life.
The Medical World Takes Notice
In the early days, misophonia was considered to be a “dislike of eating noises”, but as research, education, and knowledge about misophonia have progressed in the past decade, we now know that misophonia isn’t a matter of preferences. It’s a unique, multi-faceted sensory condition which traverses the fields of audiology, neurobiology, psychology, and others. We also know that there are other types of activating stimuli including many sounds and visual movements not associated with eating.
At present, there are no proven treatments for misophonia nor are there any medications which have been shown to alleviate its impact. This will, we hope, change in the future. In the meantime, people with misophonia must manage as best as we can with a combination of coping strategies which can vary greatly from person to person. One of the many things that can help with misophonia coping is receiving disability accommodations at one’s school or workplace.
Which brings us back to the school accommodations I mentioned at the beginning of this article.
Validating the Unseen
To those of us in the misophonia community, aka “the misosphere”, we understand innately, based on our lived experiences, that misophonia is a life-altering and often disabling thing to deal with. Some people can manage okay with it, while others are debilitated by it and their lives become increasingly isolated and it can feel hopeless.
However, to the general public, misophonia is either unknown or misunderstood. In an ideal world, people with a particular condition or disability could share their first-hand, lived experiences and be believed. After all, each person is the world’s expert on their own experiences.
When the parent I mentioned earlier approached their child’s school for some simple misophonia disability accommodations, the school gathered a team of people to assess the request for a Section 504 Plan in compliance with the Rehabilitation Act of 1973 in the United States. This process differs some from school to school, but the overall approach involves a person or persons looking at a variety of documentation to determine whether the school will provide disability accommodations and what those will be.
In the case of this particular student, the 504 Plan assessment team quickly found that there are not yet any official, published diagnostic criteria for misophonia. There is no universal diagnostic code for misophonia at this time. Many clinicians have never heard of it. Though there is a wealth of information and even a growing heap of research about misophonia available, there is scant evidence among the common medical sources to validate its existence as a unique condition.
To a public that is already skeptical and often dismissive of “invisible disabilities” that they may not understand, a lack of solid information from industry resources can add fuel to that dismissiveness.
The initial steps to validating a medical condition are — as you might imagine — first, recognizing a unique set of symptoms as an unknown disorder, proposing a name for that disorder, and then arriving at a foundational definition, based on research, for that previously unrecognized condition. These are the early steps toward making misophonia officially recognized, diagnosable, and therefore treatable.
What is the Consensus Definition of Misophonia?
Published in the Spring of 2022, the Consensus Definition of Misophonia was created by a team of leading misophonia researchers from around the globe and funded by the Misophonia Research Fund, an initiative of the REAM Foundation. It was published in Frontiers in Neuroscience, a peer-reviewed journal for academic research on things like misophonia. This publication recently added a special section specifically about misophonia, a benchmark move that highlights the wealth of studies frequently being released which are about misophonia.
The project might seem obvious [Don’t we know what misophonia is?], but something as simple as an agreed-upon definition to a word can have major implications. The need for a consensus definition was clear:
“[…] it is impossible to conduct valid research and create effective method[s] of misophonia treatment when various groups are using different definitions and consequently using different subpopulation[s] of misophonia patients, or even studying patients who have hyperacusis or other forms of decreased sound tolerance.”
~Dr. Pawel Jastreboff, who coined the term “misophonia” and was a contributor to the Consensus Definition of Misophonia
A definition provides a foundation of consistency worldwide. Without a universal, codified definition of misophonia, researchers and clinicians could be providing inconsistent data and that is too vague and prone to misunderstanding for science. Inconsistent tools will provide differing results.
“[The Consensus Definition of Misophonia] is critical to have — it gives a common language to inform diagnosis and treatment, which is also necessary for insurance reimbursement. Misdiagnosis can result in misapplication of interventions and compounded impairment and suffering. Good help starts with an accurate diagnosis.”
~Dr. Eric Storch, Baylor College of Medicine, contributor to the Consensus Definition of Misophonia
And accurate diagnoses rely on a solid definition of what a particular disorder or condition actually is. Likewise…
“This is the only way to advance research — in order to figure out the mechanisms there has to be an agreement among researchers that we are studying the same phenomenon. The consensus is also important for interpreting the findings and their implications in diagnosis and treatment.”
~ Dr. Daniela Schiller, Icahn School of Medicine at Mt. Sinai, contributor to the Consensus Definition of Misophonia
Until official diagnostic criteria for misophonia are published, until there are universal diagnostic codes, until knowledge and awareness about misophonia are more widespread within the medical community and the general public, the Consensus Definition of Misophonia is the best “official” validation that misophonia is a real and novel disorder that we have. For now.
Demand for these resources from a frustrated and struggling misophonia community is high. All of these steps take a lot of time, funding, and review and we have to be patient with those processes, though this isn’t always easy.
The Definition is, as one of many examples, a key piece of evidence for a team of people determining if a student can receive classroom disability accommodations for misophonia.
Next Steps for a Misophonia Definition
It’s important to recognize that the Consensus Definition of Misophonia is not the final word on what misophonia is. The researchers I have spoken with about the Definition admit that it is “Version 1.0” and will likely need to be updated sooner than later.
Our understanding of misophonia is changing regularly as new information about the disorder is unveiled through academic studies on it. There have also been critiques of what was included, and what was not, in the Definition.
Certainly, there is a need for a consensus definition, yet this one reflects the known circularity of the methodology and brings in assumptions from the early literature into the definition. It is then reiterative of the very problems the authors sought to address. Revisiting this definition with a more dimensional approach would be a prudent consideration.
~ Dr. Jennifer Brout, from ‘A Brief Commentary on the Consensus Definition of Misophonia’
This isn’t meant to downplay how notable the Definition is. This is how science works: results are published, then they are analyzed, critiqued, rethought, retested, corrected, and so on.
Though the Definition will likely be fine-tuned in the future, this doesn’t negate its importance in the here-and-now. We can’t arrive at the next version without the current version. We have to start somewhere.
The Future Looks Brighter
It might not seem like it, especially to misophones who are in desperate need of answers, but this is a good time to have misophonia.
The creation of the Consensus Definition of Misophonia is a major step, a necessary step, to building the future of misophonia research, diagnosis, and understanding and for installing a model for other sensory disorders.
“People who have had Misophonia their whole lives now see there is a name for it and don’t feel alone; clinicians have a shared term to learn about, assess, and treat it; scientists can study it; courts can evaluate it; Individualized Education Program [IEP] plans can be built around it, and so on. It’s a very exciting time!” ~ Dr. M. Zachary Rosenthal, Director of the Duke Center for Misophonia and Emotion Regulation and contributor to the Consensus Definition of Misophonia.
Using the Definition as a foundation, International diagnostic codes [ICD] can now be created, clinicians can talk about misophonia via a shared term, researchers can have a consistent reference so that their studies can progress, funding for research can now be sought thanks to a clear explanation of why misophonia is so in need of research, diagnostic criteria can now be formulated with a unified understanding of what misophonia is.
Thanks to the Definition, the daily lives of people struggling with misophonia can be improved with a codified clarification of what we experience; what we struggled to communicate accurately. Parents looking for information about this mysterious issue their child has regarding eating dinner with the family can find relief in their discovery of the word misophonia and its thorough Definition. Employees can point to the Definition as the basis of their need to work from home or to wear headphones at their workplace. Life-changing conversations can be had across all aspects of life because we are unified in what misophonia means.
And, student accommodation plans for school can be better structured and implemented based upon the Definition, a potentially huge relief for the parent mentioned at the beginning of this article.
It’s a powerhouse resource which those of us who struggle with misophonia can turn to for expert validation of what we experience. It provides hope.
Using the Definition as a cornerstone of the misosphere, the community of people with misophonia, we can feel less alone knowing so many other people understand our experiences and are willing to share their hope and strength. We can feel less isolated, less hopeless. Every day, people are discovering the Definition and the term misophonia, and realizing, often emotionally, that this strange sensory thing they have is, in fact, a real disorder. The misosphere welcomes new members.
As someone who is not a researcher but who deals with misophonia every day, I am grateful to the team of academics involved in the creation of the Consensus Definition of Misophonia for dedicating their time, funding, and efforts to helping the public better understand the many people like me.
Any progress which advances understanding and empathy is important progress.
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Cris Edwards is the Founder and President of soQuiet, a 501[c]3 nonprofit organization which provides resources, research, and support for people affected by misophonia so that they may lead rewarding and serene lives. Cris has experienced misophonia for 40+ years.
Sources
Brout JJ (2022) A Brief Commentary on the Consensus Definition of Misophonia. Front. Neurosci. 16:879070. doi: 10.3389/fnins.2022.879070
Jastreboff, M. M., & Jastreboff, P. J. (2001). Components of decreased sound tolerance: hyperacusis, misophonia, phonophobia. ITHS News Lett, 2(5–7), 1–5.
Jastreboff PJ (personal email communication, October, 2022)
Rosenthal MZ (personal communications, October & November, 2022)
Schiller D (personal email communication, October, 2022)
Storch EA (personal email communication, October, 2022)
Swedo SE, Baguley DM, Denys D, Dixon LJ, Erfanian M, Fioretti A, Jastreboff PJ, Kumar S, Rosenthal MZ, Rouw R, Schiller D, Simner J, Storch EA, Taylor S, Werff KRV, Altimus CM and Raver SM (2022) Consensus Definition of Misophonia: A Delphi Study. Front. Neurosci. 16:841816. doi: 10.3389/fnins.2022.841816
