Thinking About the Consensus Definition of Misophonia

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I am more than happy to report that misophonia research has evolved a great deal over the last decade, and many early hypotheses about the disorder are outdated. However, these earlier ideas have been carried into newer research. Consequently, misconceptions about the disorder remain in the public and even in academia.

As a result, sufferers have received treatments that ranged from ineffective to highly uncomfortable. From the perspective of someone with the disorder, this is a slippery slope that has not been taken seriously enough, and there is a pressing need for a consensus definition of the disorder. Recently, the Misophonia Research Foundation, in partnership with the Center for Strategic Philanthropy, responded to this need by using a structured methodology to achieve an agreed-upon definition amongst experts.

According to the consensus definition:

Misophonia includes a low tolerance for pattern-based and repetitive sounds, regardless of loudness. Triggers have specific meaning to people and are most often sounds (or related stimuli) emanating from other human beings. Context and perceived control over a trigger can determine a reaction. Once an individual with misophonia notices a trigger, they are unable to “distract themselves” from that trigger. Misophonia appears to vary from mild to severe and may impact social, academic, and occupational functioning. Finally, misophonia typically begins in childhood and adolescence. For a thorough version of the consensus definition, please see Swedo et al. (2021).

Issues to consider regarding the consensus definition

Despite some limitations of the consensus definition, researchers, clinicians, and most especially those with the disorder will only benefit from this more uniform understanding of misophonia. While I point out some of these limitations, it is especially important to understand that this definition is fluid and will change over time.

One contradiction in the consensus definition stands out to me and is important to consider. The authors state that “Misophonic responses do not seem to be elicited by the loudness of auditory stimuli but rather by the specific pattern or meaning to an individual” while also asserting that “sounds associated with oral functions are among the most often reported misophonic trigger stimuli, such as chewing, eating, smacking lips, slurping, coughing, throat clearing and swallowing” (Swedo et al., 2021).

Certainly, there is enough evidence to assert that loudness does not necessarily factor into misophonia, and studies support that sounds and visuals seem to be pattern-based and repetitive. In addition, I think most of us know that many of these triggers emanate from other people. I have always wondered how most people with misophonia have the same (or very similar triggers), yet simultaneously sounds are of a personal nature. This paradox is very much at the heart of understanding misophonia, and such a contradiction is highly confusing.

Notably, research published soon after the consensus definition (Hansen, Leber & Saygin, 2021) adds to evidence that triggers are not limited to oral functions and that misophonia, therefore, should be reconceptualized. I believe that the research must continue to address the nature of misophonia stimuli. Are they personal? Are they related to mouth and nasal sounds? Likely, the answer will be somewhere in the middle. Attention to the acoustic nature of trigger sounds and how these sounds are neurologically processed may help to parse out this very confusing feature of misophonia in the definition’s next iteration.

The current consensus definition also does not commit to any classification of the disorder but suggests that there may be some “underlying organic component.” The committee concluded that “postulated mechanisms don’t belong in the definition at this time.” A consensus definition of a newly proposed disorder is tricky business. The authors relied on extant misophonia research to inform the process. Yet, relying only on “misophonia research” without extrapolating from basic neuroscience seems antithetical to the nature of misophonia, a highly complex and elusive disorder.

This is particularly important to those of us with misophonia, who are likely more than tired of being told that we have a psychiatric disorder when, in fact, this is a cross-disciplinary disorder that certainly includes neurological processes. It is even more important to those who have received treatments based on these inaccurate assumptions.

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The current consensus definition, then, follows a model of only observable behavior. This paradigm, long utilized by the American Psychiatric Association in the Diagnostic and Statistical Manual of Mental Disorders (DSM), is limited and has been challenged by a more dimensional approach to defining complex mental phenomena. An example of a more inclusive model is the Research Domain Criteria Matrix (RDoC), an initiative of the United States National Institute of Mental Health. The RDoC framework is a research strategy that involves a matrix of six major domains of human functions. While the RDoC is not yet a diagnostic system, it seeks to inform mental health measurement, diagnosis, and treatment while increasing knowledge of how biological, physiological, and behavioral mechanisms interact. Again, due to the contradictory and multidisciplinary nature of misophonia, this type of model is essential both to the research and conceptualization of this disorder. Let’s hope that the next definition includes more neuroscience and processing as aspects of the disorder, but for now, we need to keep in mind that these very important viewpoints were left out.

A final issue with the consensus definition has to do with one’s understanding of what constitutes a misophonia “expert.” I ask, how is anyone an expert in misophonia when we are still struggling for a working definition? In addition, the patient voice is so very important in terms of defining this disorder. That voice is missing in this version of the definition. Let’s hope to hear it in the next one!