12 years ago I learned that there was a name for the affliction that was suddenly turning my life upside down. Every whistle, snap, leg-shake, or sniffle was suddenly the end of the world. For most of my childhood, I was without knowledge of sensory dysregulation from sounds and visuals, although you could not bribe me with a Barbie Dream House to brush my hair, and I certainly was not going to have any clips in it. My mother learned this lesson the hard way after painstakingly doing my hair many times, only to have them tossed out before we made it out the door.
I only learned of the name misophonia because my cousin Ashley had seen the 20/20 interview video and told me of the term. Even in the beginning, I was tentative on the name misophonia because I had significant visual triggers—my mother’s leg shaking was my first and worst trigger, so I wasn’t sure if this label was where I belonged. Eventually, I learned that there wasn’t really a huge community for sensory-based things, other than Sensory Processing Disorder/Sensory Integration Dysfunction, which was scattered and confusing, misophonia, and autism/adhd groups, which I felt even more polarized by. For a while, I felt lost in neurodivergence. I knew that there was something different about how my brain was processing sensory stimuli, but none of the existing literature and science seemed to provide me with the answers I craved.
Begrudgingly, I accepted that I fit best in the misophonia world because my trigger sounds were getting worse—and remain bad to this day. Whistling, throat clearing, chewing hard crunches, sharp “s” sounds, and the click of keyboards and mice are some of the primary triggers that bother me for sounds. When I learned of the work of Arjan Schröder on misokinesia, I did feel validated that the visual triggers were finally being seen… pun intended… but something still felt missing.
Why were so many of the individuals I’d met with misophonia, myself included, dealing with sensory dysregulation far beyond our eyes and ears? Scents, food textures, tastes, the texture of fabric, and more were all coming up constantly. For many years, others who championed behavior-based misophonia care denied this possibility and said that Misophonia International was wrongfully conflating misophonia (a decreased tolerance to certain sounds) with sensory processing disorder and sensory integration dysfunction (the battle between these two terms is another story and one that warrants a more thorough investigation than what is in this article).
Yet, as the science has grown with misophonia, one thing has become clear. There is a neurophysiological and brain-based component of misophonia, there is an overlap with autism spectrum disorder traits, and sensory-based dysregulation is noted in many individuals who identify with misophonia. I believe we need to go past thinking about misophonia as merely a “disorder” or a “discrete sound intolerance” and consider the distinct neurotype of individuals who suffer from sensory dysregulation.
One thing has remained painfully clear to me over these past 12 years—behavior-based methods like exposure therapy do not work. Misophonia is not a behavior, or a cognitive affliction where we have learned to respond.
