A response to the preprint of “Family Accommodation in Children and Adolescents with Misophonia”

“Extreme care must be taken to be clear and impeccable with the words researchers use. Speculation is often misconstrued as fact by a public that is desperate for answers.”

soQuiet is a nonprofit organization which has always been described as a "misophonia advocacy organization." As part of our Code of Ethics, we state that: "We advocate for those whose voices are unheard. Misophonia can be an isolating disorder, but together we are strong."

A recent preprint of a paper titled,"Family Accommodation in Children and Adolescents with Misophonia"  from the Baylor College of Medicine, has created unease, disbelief, and anger within the misosphere, the community of all people whose lives are affected by misophonia.

First, it’s important to note that the topic and intent of this study are to be applauded. I, as well as our advisors, agree that more, or any, research on family dynamics and misophonia is certainly needed.

Yet, from an academic and scientific standpoint, there are numerous points of concern in this paper, from its conflation of misophonia with Obsessive-Compulsive Disorder [OCD]—including using an outdated misophonia assessment, the Amsterdam Misophonia Scale, which suffered from this mistaken association with OCD—to its claim that misophonia is a "psychological condition" [as yet unproven; misophonia is considered more complex than that] and its apparent confusion of the “correlation vs. causation” relationship between symptom severity and the degree of family accommodations for children with misophonia.

However, my greatest concern is the potential impact this paper could have on the daily lives of people who depend on accommodations to live rewarding and serene lives with misophonia.

This paper's suggestion that a reduction in both accommodations and use of assistive devices ["tangible items"] will also reduce symptoms is spurious and disheartening. This study did not test this recommendation on any actual families to see what happens. The paper takes a stance that people with misophonia and their families are at fault for its severity. This does not reflect the lived experiences of the people we serve.

soQuiet works with people who have misophonia and, often, their quality of life—their ability to attend school or college, to work at their place of employment, to enjoy their lives as much as possible —is directly attributed to their use of accommodations and assistive devices [earphones, earplugs, white noise, etc.] in their lives. 

It's not unusual for us to speak with people who feel utterly hopeless, isolated, and who experience marked depression, suicidal ideation, and self harm because having moderate-to-intense misophonia can make "a normal life" seem impossible. Having reasonable accommodations and assistive devices available gives people with misophonia hope and allows them to do things they thought they couldn't do.

I fear that this paper will be cited by naysaying parents, teachers, employers, courts, etc. as a reason to deny necessary disability accommodations for misophonia. This could have a devastating effect. People with misophonia will lose hope. 

“The problem is, there is no research that has tested this theory in the context of misophonia. […] We need experimental studies or more follow ups over time before we can say what the impact is of these accommodations. We need to consider the possibility that [accommodations] could actually be helping a person with misophonia to participate in life more than they could otherwise.” ~Dr. Jane Gregory, Sounds like Misophonia

Science needs to avoid the pitfalls from earlier decades—shameful, invalidating treatment of people who are already marginalized and vulnerable due to a disease, disorder, or disability—by taking a broader perspective that includes the actual experiences and input of the people who are most affected by research and its recommendations. 

Academia is no longer the isolated bubble it used to be; published research hits the inboxes of the general public instantly. Information can never be fully redacted if found to be incorrect, misunderstood, or harmful. Extreme care must be taken to be clear and impeccable with the words researchers use. Speculation is often misconstrued as fact by a public that is desperate for answers.

We suggest opening the conversation to include the people who live with misophonia when making recommendations that significantly impact our lives before submitting research to journals.

I am requesting that this paper be retracted in its current preprint state and rewritten with complete mindfulness of the real people who will be affected by what it is proposing and suggesting.

soQuiet is more than willing to help make that happen. Let’s work together.

Further Reading:

‘Do You Think Misophonia Sufferers Should Get Accommodations?’ by Dr. Jennifer Jo Brout [Psychology Today]