Do You Think Misophonia Sufferers Should Get Accommodations?

I spend a great deal of time thinking about ways to advocate for and work with families impacted by misophonia. As many of you know, my own family has been affected by misophonia. To me, this is an essential area of research. The amount of research on children and families is small in comparison to adult studies. Regardless, families remain desperate for help as we wait for more misophonia awareness among therapists across the multidisciplinary fields that support children and families.

One of the first issues that arises regarding accommodations is related to the use of headphones. Parents want to know how much they should let their misophonic child wear devices such as headphones, sound maskers, and so on. I would like to add some clarity here. Audiologists warn that “plugging” all day and avoiding sounds entirely may lead to a higher level of sensitivity. However, plugging sound all day is not the same as other suggestions audiologists make, such as sound masking and layering. Sound masking often includes wearing inner ear devices that generate white noise, enabling some cancellation of sound but still allowing the individual to take part in conversation. Sound layering is an accommodation in which various sounds, such as music, fans, etc., work together to help de-emphasize triggers within the soundscape.

In fact, within an audiology paradigm, Porcaro, Alavi, Gollery, and Danesh (2019) conducted a survey of 686 undergraduate instructors to assess their knowledge of misophonia and their willingness to make accommodations for their students. In addition to finding that there is a need for greater awareness of misophonia in academia, the authors recommended teachers make acceptable adjustments for students who have misophonia, such as enabling them to use earplugs, headphones, or white noise generators during lectures or tests, and possibly allowing for smaller testing venues.

Another article (Storch et al. 2023), exploring accommodations for children from a psychology paradigm, focuses on the family. This article compares accommodations made for children with misophonia to those that are made by parents of children with anxiety. Yet, the article itself is confusing. First, the comparison between the accommodations made for children with anxiety versus those with misophonia deserves some consideration. According to the Consensus Definition of Misophonia (Swedo et al, 2022), we don’t know how to classify misophonia. Regardless of description and classification, anxiety and misophonia are two distinctly different disorders, despite some overlap. Anxiety may be internally generated as someone worries about aspects of their lives. As a result, these worry thoughts may set off the sympathetic nervous system (freeze/flight/fight). However, misophonia involves external stimuli from the outside environment that acts upon the nervous system. In addition, the stimuli involved in misophonia are often unavoidable. So, it could easily be that more accommodations are necessary regarding physical space and proximity to trigger sounds and sights in misophonia versus anxiety.

When we think of avoidance from a psychological paradigm, we often think of it as pathological and serving to maintain a disorder. For example, if one has agoraphobia, the psychologist aims to support the individual in learning how to slowly stop avoiding that which they fear. Avoidance in misophonia may be more akin to avoiding triggering stimuli in, for example, a migraine. Possibly another comparison to consider would be those with misophonia and those with hyperacusis (another disorder of decreased sound tolerance in which sounds are interpreted as being louder than they are objectively measured to be). Until there is more research that informs what kind of disorder misophonia is, I would like to see other therapists help people learn to live with this disorder as best they can and help people integrate strategies into their lives that support their ability to negotiate life with misophonia.

Dr. Gregory (clinical psychologist at Oxford University and author of the newly released “Sounds Like Misophonia: How to Stop Small Noises from Causing Extreme Reactions") explains some of the potential semantic confusion: “For anxiety disorders and OCD, the term ‘family accommodations’ refers to strategies that families use that are intended to reduce a child's distress, but which can have unintended consequences. Some of these strategies can contribute to a child's avoidance, leading to missing out on things that are important to them and their development. Such avoidance can also prevent them from discovering that their feared outcome might not come true or that they can cope with uncomfortable feelings. The problem is, there is no research that has tested this theory in the context of misophonia."

Dr. Gregory also states “We need to consider the possibility that what looks like avoidance could actually be helping a person with misophonia to participate in life more than they could otherwise.”

Both Dr. Gregory and I have written books based on ways to negotiate family relations without making the person with misophonia continually uncomfortable. Dr. Gregory comments, “It's worrying to think that people might be reading this paper and thinking it means we should be taking away accommodations that currently help individuals with misophonia. The authors of the paper acknowledge that we need more research to test this theory further. But people are looking for answers now. There is so little information about misophonia available that families, clinicians, and schools are going directly to the research for guidance. There is a risk that they will read the key points from a paper like this and take it to mean that they should be withdrawing accommodations from children. We must be extra careful about how we report misophonia research.”

The researchers also state that "Family accommodation was a moderate to strong predictor of misophonia severity…" Here the authors are referring to a statistical term, yet when others read this, it could be misconstrued to mean that the more parents accommodate their children, the worse misophonia becomes. According to Dr. Gregory, “What this study found is that family accommodations increase as misophonia severity increases. We need experimental studies or more follow-ups over time before we can say what the impact is of these accommodations."

Helping families help their children learn to work with their nervous systems from an autonomic self-regulation perspective makes much more sense to me. An individual with misophonia usually feels victimized by the overwhelming auditory and visual stimuli that are generated by those closest to them. A clinician, parent, or adult is most effective when conveying understanding to the individual with misophonia, and at the same time considering the feelings of family members and spouses, etc. Family members and partners often feel victimized by the misophonic individual’s sudden, unpredictable words or actions. Teaching the child with misophonia ways to self-calm, while supporting a family through this process, is possibly the best way to proceed.

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“For now, the best we can do is support families to discover and test out a range of strategies that might help. They are the ones best placed to weigh each one up based on their own family's needs and priorities”, Dr. Gregory explains. Of course, I completely agree!