The quest into the unknown land of ‘misophonia’ continues. It is not included in any diagnostic manuals, it is not widely acknowledged by the medical community. Yet people who suffer from misophonia exist and here is what they are confronted with, in the words of Dr. Jennifer Jo Brout, the founder of International Misophonia Research Network, a New York State Certified School Psychologist, a Connecticut Professional Licensed Counselor, with a Doctorate in School/Clinical-Child Psychology, based here in the Connecticut, the United States of America.
Differentiating Disorders: Misophonia and Sensory Over-Responsivity
As all researchers know, almost comically, well, uncovering new scientific knowledge is no easy task. Whether you are engaged in investigating a well-trod topic, or, like me, you are forging relatively new territory, there are often not simple solutions to the complex problems we encounter. Perhaps you have recently read about the disorder I study and advocate for, misophonia, on this blog. Misophonia is a neurologically based disorder in which auditory, and sometimes visual, stimuli are misinterpreted within the central nervous system, leading sufferers to have unpleasant reactions to sounds others would consider barely noticeable.
When misophonia sufferers are exposed to particular “trigger sounds,” the fight/flight response is set off within the body. For these individuals, hearing a noxious noise can feel akin to being confronted with a wild animal, as their hearts race and muscles tense.
Because misophonia (does not appear in diagnostic manuals, such as DSM-5 or ICD-10) is only recently gaining wider recognition in the public and scientific communities, studying this disorder presents a unique set of challenges.
Though there is a scant amount of research on misophonia at this point, fortunately, there is a large body of research that has been developed over the past 15 years on a similar disorder, Sensory Over-Responsivity (a subtype of Sensory Processing Disorder). Individuals suffering from Sensory Over-Responsivity react to all types of sensory information as thought it were dangerous, and their fight/flight systems can be activated by seemingly inoffensive sights, smells, tastes, touches, or sounds. In both, misophonia and Sensory Over-Responsivity, certain sounds can leave sufferers feeling angry, fearful, disgusted, and “out of control.”
Though it may seem natural that the research on Sensory Over-Responsivity be used to inform our understanding of misophonia, this has, largely, not taken place. We may ask ourselves, why are these two highly similar disorders rarely compared in misophonia academic articles, or articles in the popular press? My answer to this question is an unfortunate one: for the most part, researchers are not used to working within a cross-disciplinary model.
While psychology researchers, audiology researchers, and occupational therapy researchers may be competent and successful within their own fields, they are often not accustomed to reaching beyond them to integrate other types of research into their own work. There is a long pragmatic and political history behind the lack of cross-disciplinary research work that is not necessarily the fault of academic researchers or clinicians. However, in the “age of information” that we are living in, sharing valuable knowledge between researchers from different disciplines should now be as quick and easy as doing a google search, and as common. As it is, this lack of information sharing trickles down to the public, and often leads Misophonia and Sensory Over-Responsivity sufferers to find inaccurate information about their own conditions.
Unfortunately, another important problem facing both misophonia and Sensory Over-Responsivity is that neither disorder has been accepted into the diagnostic manuals (DSM-5 or the ICD-10). It is difficult to understand the logic behind this fact, as studies have estimated that up to 20% of children are affected by sensory-based disorders. Likewise, tens of thousands of people have gathered on social media platforms to form support groups for misophonia, helping one another fill the gaps left by a large portion of the mental health community. There is a long political history involving how a disorder gains entry into diagnostic manuals, and though the National Institute of Health has taken steps recently to try to change this process, this change comes long after the damage has been done. Therefore, what we are left with is two disorders that “don’t exist,” that are not reimbursable by insurance, and for which research funding is extraordinarily difficult to come by.
Sensory Over- Responsivity and Misophonia share more than symptoms. They share neglect from the medical and psychiatric communities, which has resulted in the dissemination of more than enough inaccurate and confusing information to do damage to sufferers lives. My hope is that going forward, receptive practitioners and researchers from all facets of the healthcare community can work cooperatively to study and treat these disorders, discovering important knowledge and improving sufferers’ quality of life.
This post is written by Dr. Jennifer Jo Brout (who is also the mother of adult triplets, and is a Misophonia sufferer herself) and Miss Madeline Appelbaum, a recent alumna of Reed College (Oregon, USA), with a particular interest in educational psychology. Madeline wrote an undergraduate thesis on the effects of autonomous and controlled motivation to learn on college students.
International Misophonia Research Network (Amsterdam)
With love for Research,
