By Dr. Jennifer Brout
Just when you think that enough overlapping and diagnostically confusing “disorders” exist, a new one pops up! If you haven’t noticed, lately there has been a lot of press about a newly proposed disorder called “Misophonia.” Almost every day a new press article floats across my newsfeed about this new “disorder.”
Misophonia is described as a neurological processing disorder in which people react with extraordinary aversion to specific sounds. Usually these sounds are generated by others and are often characterized as “body noises” (i.e. mouth sounds, such as chewing, whistling, coughing, sneezing, etc.). Sometimes the press describes the disorder as “Chewing Rage” or “Sound Rage.“ Despite the sensationalism in the press, Misophonia can be a life altering condition that often leaves individuals living in isolation in order to avoid sounds.
The disorder was originally termed in 2001 by Pawel and Margaret Jastreboff while working in their tinnitusi and hyperacusisii clinic at Emory University. They noticed that some patients they thought had hyperacusis (in which sounds are perceived as painfully loud) were, in fact, demonstrating something different in reaction to noise. Unlike hyperacusis patients, this new group responded to “pattern based noises” with autonomic nervous system arousal and extreme negative emotional reactivity.
The Jastreboff’s observed that some people reacted to sounds, such as chewing, pencil tapping, keyboard typing, and coughing, with high levels of irritability and rage. The Jastreboffs’ proposed that for these patients a negative association between a person, situation or experience and a particular sound had been paired and stored in memory. Thus, when particular sounds were heard, the extreme reaction was triggered. They did not study their theory but ventured to begin treatment at their clinic based on methods previously used for tinnitus and hyperacusis.
News about Misophonia was fairly quiet (except amongst some small audiology circles) until 2011, when New York Times writer Joyce Cohen wrote an article about the subject. This began a snowball of self-identified sufferers forming self-help groups on social media. Within 5 years, numerous Facebook support groups (some with over 10,000 members formed), and this motivated a small body of research at academic institutions.
This may be one of the first times the public has so rapidly pushed a “disorder” into the beginning stages of research simply through unintended social media support grouping. This is fantastic! Yet, this also has its downsides, and these are considerable.
Misophonia may or may not be a new disorder. In fact, it overlaps with a subtype of Sensory Processing Disorder (Sensory Over-Responsivity, particularly within the auditory realm). In addition, auditory over-responsivity (or extreme sound sensitivity, as many of us have called it for decades) is also present in Autism Spectrum Disorder, Fragile X Syndrome, Post Traumatic Stress Disorder, schizophrenia, ADHD and many other developmental, genetic and neurological conditions. This is nothing new to so many of us who are neurodiverse or who work with neurodiverse individuals.
The downside, then, is that researchers are not integrating that which has been done in basic science (and in regard to all of these other disorders) with the “new” Misophonia research. As someone who has studied auditory over-responsivity and the profound effects it can have on an individual’s life for almost 20 years (both as a stand alone condition and as a symptom of other conditions), this is almost painful to witness.
However, again looking on the bright side…despite non-integrated research, after decades of people suffering from the recently-named Misophonia, Sensory Processing Disorders, and Sensory Over Responsivity, there is finally a big push toward recognition of and research into this elusive constellation of symptoms that manifest across so many different disorders, often significantly (if not severely) negatively impacting their lives. For more information about Misophonia please see misophonia-research.com or misophoniainternational.com
i Tinnitus: Ringing in ear, or ears
ii Hyperacusis: Condition in which sounds are perceived as painfully loud
Dr. Jennifer Jo Brout is a New York State Certified School Psychologist, a Connecticut Professional Licensed Counselor, and she also holds a Doctorate in School/Clinical-Child Psychology. She graduated from New York University, Columbia University, and Ferkauf School of Psychology (at Albert Einstein School of Medicine) respectively. She is also the mother of adult triplets, and is a Misophonia sufferer herself.
Disappointed by her own experiences with the state of the field when seeking help for her own child in 1999, Dr. Brout began efforts to establish better research practice, improved diagnosis, and innovative clinical practice related to Misophonia (under the name “auditory over-resposivity).
Dr. Brout has been at the forefront of research in this area for over 18 years, having established the Sensation and Emotion Network (SENetwork) in 2007, along with Sensory Processing and Emotion Regulation Program at Duke University in 2008. She has also worked Dr. Lucy Miller at the Sensory Processing Disorder Foundation since 1999 and is a member of their scientific work-group (and a recipient of their Advocacy Award). Dr. Brout continues to bring together multi-disciplinary teams of highly esteemed academic researchers and clinicians in order to share resources, eventually culminating in research papers, academic conferences, and evidence-based translational treatment.
She established the IMRN in order to lead the way toward a new paradigm of research that bypasses lack of governmental funding and paves the way toward better relationships between Misophonia sufferers and those who research and treat them. She is also proud to be the SPD and Misophonia Advocate for the Advocacy Organization A2A, Adversity to Advocacy.