WHO ICD-11 Misophonia Proposal

UPDATE: While the IMF felt it was necessary to publish our ICD-11 proposal for those who contributed, our donors, and those who bravely submitted their experiences with misophonia, we have decided that for the sake of the community, and to focus our efforts on a concentrated effort, to retract our individual proposal, and instead comment with our proposal to the proposal by Zachary M. Rosenthal and co. We whole-heartedly support this proposal, however, since we felt an ethical and moral duty to report the experiences of our team and community. Our comment can be found on the original proposal: https://icd.who.int/dev11/proposals/f/icd/en#/http://id.who.int/icd/entity/1088544686?readOnly=true&action=AddNewEntityProposal&stableProposalGroupId=a0081991-064e-4396-89b0-bd098eb5bdfc

If you are a medical, mental health professional, clinician, concerned advocate, or researcher, you may view our proposal to the ICD-11 by registering and adding feedback on the platform: https://icd.who.int/dev11/Identity/Account/Register and going to the following page, once logged in. You must declare your organization to view proposals. Our comment is made by Shaylynn Hayes-Raymond. It will not work unless you are first logged in: https://icd.who.int/dev11/proposals/f/icd/en#/http://id.who.int/icd/entity/1088544686?readOnly=true&action=AddNewEntityProposal&stableProposalGroupId=a0081991-064e-4396-89b0-bd098eb5bdfc. The ICD-11 allows for individuals to show support, “agree”/”disagree” or add comments on proposals.

For clarification on our petition for The WHO and the submission of misophonia as a discrete disorder, the petition was never meant to be the single point of change, but to highlight the community desire and need for misophonia to be recognized. Signatures from this petition are used as supporting evidence of a growing interest in misophonia by the wider public.

The IMF would love to work with any researchers or organizations who share the goal of getting misophonia into a classification manual such as the DSM or ICD-11. We have been working diligently on these goals for a year. We have also been communicating via email with the WHO and DSM during this process. The IMF is aware other misophonia organizations are also pushing for this acceptance, and we are delighted that these goals align. If any organizations would like to pool resources for these goals, we are happy to do so. At this time, we have not been contacted by other misophonia research or advocacy organizations, but we have reached out and offered our help should it be required or desired. It is unfortunate that there was no coordination for submitting proposals to the ICD-11 before other organizations did so, but the IMF owes it to our signatory and donors to continue to submit our own proposal. We sincerely apologize for any confusion this may lead to, but attempts to collaborate have not been answered. The IMF sincerely hopes that the submission of two proposals to the ICD-11 will add more legitimacy to the claim of misophonia being a discrete disorder.

Step 1. The petition

The petition was utilized to show the impact misophonia has on the community, sufferers, and family members. While petitions are not academic research they provide a direct pipeline to community views and needs without editorializing. This petition shows that the community supports our efforts and shows the need for misophonia to be considered in diagnostic manuals.

Step 2. Collecting and analyzing research for justification of misophonia as a discrete disorder

Without research we would be nowhere! We are especially humbled by the work of Dr. Sukhbinder Kumar, Dr. Jennifer Jo Brout. Dr. Zachary M. Rosenthal at Duke, Dr. Mercede Erfanian, Dr.s Jastreboff and Jastreboff, and many more. This research is truly invaluable to the justification of misophonia as a discrete disorder.

Step 3. Writing the proposal document and submitting for review

This step includes writing the relevant sections for justification of misophonia being in the ICD-11. and then ICD-12

Members of the misophonia community, scientists, and healthcare practitioners can create accounts on the ICD-11 portal to comment on, add ideas, and support current proposals. This helps the case tremendously.

Step 4. Submission

We have been working on this proposal since June 2023, but have waited for significant responses to our community petition as we firmly believe that the perspective of the community is paramount in all advocacy work that takes our day to day lives into consideration. Early work on the document was completed in summer 2024, but we provided more time for signatures.

Our next course of action is to submit misophonia for consideration to the DSM.

Our Full Proposal (Submitted as a comment)

Proposal for the Inclusion of Misophonia as a Child to “Symptoms, Signs or Clinical Findings of the Nervous System” in the ICD-11

Shaylynn Hayes-Raymond, MA, LCT-C
Director, The International Misophonia Foundation, 501(c)(3)
Conflicts of Interest: No conflicts of interest.

This rationale is provided by the International Misophonia Foundation, our community, and the courageous persons who provided their responses to guide and support this campaign.

Misophonia, a condition defined by intense emotional and physiological responses to specific auditory and visual stimuli, profoundly affects the lives of those it touches. Triggers such as chewing, tapping, or repetitive movements provoke reactions far beyond annoyance, often resulting in anger, panic, or disgust. These responses are involuntary and deeply rooted in the nervous system, challenging the sufferer’s ability to function socially, academically, or professionally (Jastreboff & Jastreboff, 2001; Daniels et al., 2020).

Despite increasing recognition in scientific literature, misophonia remains absent from the International Classification of Diseases, 11th Revision (ICD-11), denying sufferers access to formal diagnosis, treatment, and accommodations. This absence not only exacerbates their struggles but also perpetuates stigma and misunderstanding. Studies have consistently shown distinct neurobiological underpinnings of misophonia, with heightened activity in the anterior insular cortex (Kumar et al., 2017) and disrupted emotional processing networks (Aryal & Prabhu, 2024).

However, the true impact of misophonia cannot be understood through science alone. Lived experiences, captured in testimonies from sufferers and their families, reveal the emotional toll and barriers to care they face daily. These voices, combined with robust scientific evidence, demand the inclusion of misophonia in the ICD-11 to provide validation, understanding, and pathways to effective intervention.

Defining Misophonia

Misophonia, meaning “hatred of sound,” is far more complex than its name suggests. Individuals with misophonia experience a visceral, emotional reaction to specific auditory and visual stimuli. These responses are disproportionate, involuntary, and often accompanied by physiological arousal, such as increased heart rate and sweating (Edelstein et al., 2013; Silva & Sanchez, 2019). Common triggers include oral sounds like chewing, repetitive pen clicking, or tapping, as well as visual stimuli like leg shaking or hand movements (Jastreboff & Jastreboff, 2015).

Daniels et al. (2020) found that sufferers often struggle with cognitive control in the face of triggering stimuli, resulting in diminished emotional regulation. This aligns with findings by Guetta et al. (2022), who emphasized how emotional instability amplifies the intensity of misophonic reactions. Beyond the immediate emotional toll, these responses often lead to avoidance behaviors that disrupt daily life. Dixon et al. (2024) reported that sufferers frequently withdraw from social gatherings, avoid professional settings, and experience a diminished quality of life. Misophonia also shares traits with sensory processing disorders, aligning with theories proposed by Brout et al. (2018) regarding sensory dysregulation. This connection underscores the need for tailored interventions that address both the physiological and emotional dimensions of the condition.

Additionally, Piccardi and Gliga (2022) examined sensory regulation in developmental contexts, revealing patterns that overlap with misophonia’s sensory-emotional challenges. Their findings suggest a need for a broader understanding of how misophonia integrates with sensory processing disorders.

Prevalence and Comorbidity

Misophonia is not rare. Studies estimate that 6% to 20% of the population experience misophonia, with severity and impact varying widely (Pfeiffer et al., 2024; Jakubovski et al., 2022). Early onset is common, with symptoms often appearing in childhood or adolescence. Zhou et al. (2017) linked early symptoms to difficulties in social and emotional development, underscoring the need for early intervention.

Misophonia frequently co-occurs with psychiatric disorders. Banker et al. (2022) identified links between misophonia and obsessive-compulsive disorder, while Murphy et al. (2024) found parallels with anxiety disorders. Additionally, Erfanian et al. (2019) observed significant rates of comorbid depression among misophonia sufferers, highlighting the condition’s impact on mental health.

Furthermore, Rinaldi et al. (2023) demonstrated significant overlaps between misophonia and autistic traits, suggesting that sensory sensitivities, coupled with emotion regulation challenges, often manifest in these individuals. This emphasizes the need for tailored diagnostic frameworks that consider comorbidities and overlapping symptomatology.

Neurobiological Foundations

The distinct neurobiological profile of misophonia sets it apart from other sensory processing conditions. Research consistently identifies the anterior insular cortex (AIC) as central to misophonia’s mechanisms. Aryal and Prabhu (2024) found atypical auditory cortical functioning in individuals with misophonia, while Kumar et al. (2017) demonstrated hyperactivity in the AIC during exposure to triggers. These findings suggest a heightened sensitivity to sensory salience, making certain stimuli disproportionately distressing.

Further studies reveal that misophonia involves disrupted connectivity within the salience network, which integrates sensory inputs with emotional responses. Eijsker et al. (2019) observed abnormal communication between the AIC, amygdala, and prefrontal cortex, contributing to difficulties in emotional regulation. Grossini et al. (2022) also identified imbalances in the autonomic nervous system, reinforcing the condition’s physiological basis. Emerging research further emphasizes the role of interoception in misophonia. Demartini et al. (2021) found reduced interoceptive accuracy in misophonia sufferers, suggesting disrupted processing of internal bodily signals during exposure to triggering stimuli. Schmitt and Schoen (2022) demonstrated that interoceptive dysregulation contributes to sensory processing difficulties and amplifies emotional responses in misophonia sufferers.

The Human Cost

The scientific findings are mirrored by the lived experiences of those with misophonia. Testimonies collected by the International Misophonia Foundation highlight the condition’s emotional, social, and financial toll. “I avoid meals with my family because I can’t bear the sounds,” one sufferer explained. Another shared, “Every part of our lives is dictated by avoiding my son’s triggers.” Families, too, face unique challenges. Guzick et al. (2023) documented how misophonia strains relationships and disrupts daily routines. Meanwhile, barriers to care, including the lack of knowledgeable clinicians and inadequate insurance coverage, compound these struggles (Henry et al., 2022).

The Community Experience

While science provides critical insights, the lived experiences of individuals with misophonia offer a more profound understanding of its impact. Over 1,000 individuals signed a petition by the International Misophonia Foundation, sharing personal accounts of isolation, frustration, and resilience.

One sufferer shared, “I can’t eat meals with my family without feeling overwhelmed by the sounds. It’s isolating and exhausting.” This sentiment is echoed by Guzick et al. (2023), who found that misophonia often drives sufferers to withdraw from social and professional environments. Families also bear the emotional and financial burdens, as parents navigate the complexities of raising children with severe sensory sensitivities. “Our life revolves around avoiding my son’s triggers,” one parent explained, illustrating the far-reaching implications of the condition.

Barriers to care compound these challenges. Many individuals report difficulty finding clinicians knowledgeable about misophonia or securing insurance coverage for treatments. Henry et al. (2022) emphasized the urgent need for education within the medical community, noting that misophonia’s absence from diagnostic manuals perpetuates these barriers.

The Case for ICD-11 Inclusion from an Impact Perspective

Despite growing scientific recognition, misophonia remains largely unrecognized in formal diagnostic systems. Its absence from the ICD-11 hinders progress in treatment, research, and societal understanding. Formal inclusion would have numerous benefits:

Improved Access to Care: Recognition in ICD-11 would enable individuals to access insurance-covered treatments and accommodations for misophonia-related impairments.
Support for Research: Inclusion would provide a standardized framework for studying the condition, fostering advancements in understanding its etiology, prevalence, and treatment options.
Reduction of Stigma: Official classification would help validate the experiences of those with misophonia, reducing societal misconceptions.

Evidence of Community Need

The International Misophonia Foundation (IMF) conducted a year-long advocacy campaign, collecting over 1,000 signatures from individuals worldwide (Hayes-Raymond, 2023). Key findings from community testimonials include:

Personal Suffering: Nearly 40% of respondents reported daily struggles caused by common sounds, leading to profound distress.

Impact on Families: 35% highlighted the emotional and financial toll on families, with caregivers often struggling to access appropriate resources.

Barriers to Care: More than 20% reported difficulty obtaining insurance coverage or finding qualified professionals familiar with misophonia.

Social Stigma: Many individuals expressed feeling dismissed or misunderstood by peers, employers, and healthcare providers.

These findings underscore the urgent need for formal recognition to improve access to care and reduce stigma.

Community Impact

Misophonia affects a vast and diverse community, as evidenced by the overwhelming response to the International Misophonia Foundation’s petition, which has garnered over 30,000 signatures. This movement underscores the collective urgency for recognition, support, and effective interventions. Below are the key insights derived from the testimonials provided by petition signatories:

Personal Suffering: Over 421 individuals explicitly describe the debilitating impact of misophonia on their daily lives.

These accounts highlight:

Overwhelming distress triggered by common sounds, such as chewing or tapping.
Isolation and avoidance of social interactions due to fear of exposure to triggers.
Emotional toll, including anxiety, anger, and despair, which can escalate to depression.

One individual stated:

“Misophonia has taken over my life. I can’t enjoy meals with my family or work in an office environment without feeling overwhelmed.”

Family Impact: Families, especially parents of affected children, report profound challenges, with 403 testimonials shedding light on:

The difficulties in raising children with severe sensory reactivity.
Strained relationships due to misunderstandings or the need for accommodations.
Emotional and financial burdens associated with finding suitable treatments.

One parent wrote:

“Our daughter has suffered from misophonia for most of her life. Watching her struggle in school and social settings is heartbreaking.”

Need for Recognition: A total of 123 voices emphasized the dire need for misophonia to be acknowledged as a legitimate condition in diagnostic manuals. Recognition would:

Validate the lived experiences of sufferers.
Encourage more research into the condition.
Mitigate the stigma by fostering awareness among clinicians and the public.

Access to Care: The inability to access adequate care was mentioned in 225 testimonials. Common concerns include:

A lack of trained professionals knowledgeable about misophonia.
Absence of insurance coverage for misophonia-related therapies.
The need for diagnostic clarity to unlock resources and accommodations.

One comment encapsulated this need:

“I have been dismissed by doctors who have no knowledge of misophonia. This has left me feeling hopeless and without a path to recovery.”

Social Stigma: Although less frequently mentioned, the theme of stigma appeared in 14 responses, revealing the emotional pain of being misunderstood or judged:

“Misophonia is not just a quirk. People think I’m overreacting, but they don’t understand the physical and emotional agony I endure.”

The overwhelming support and testimonials demonstrate the community’s profound struggles and demand for recognition. Including misophonia in the ICD-11 would not only validate these experiences but also foster clinical, educational, and societal progress. The International Misophonia Foundation stands as the voice of this community, advocating for acknowledgment, equity, and research to transform the lives of individuals and families worldwide.

Accurate and representative prevalence data is crucial for establishing the legitimacy of any diagnostic proposal. This proposal relies on validated, population-based studies to ensure consistency and reliability.

IMF RESEARCH COMMITTEE

• Shaylynn Hayes-Raymond, MA in Counselling Psychology, LCT-C, Director of the IMF, Advocate, Clinician, and Misophonia Sufferer

• Harrison Porter, IMF Research Coordinator, Bachelor of Arts (University of Toronto), Master of Theological Studies (Harvard Divinity School).

• Sharon Burns, Misophonia Sufferer, Advocate, A.S. in Administration of Justice and B.S. in Criminal Justice

• Clarissa Nerdin graduated from the University of Kentucky with a Bachelor of Science in Electrical Engineering in 2021, has misophonia and is actively researching the condition through machine learning studies.

• Leticia Osei, MA in Counselling Psychology, Registered Psychotherapist (Qualifying), RN, BScN. Mental Health Advocate.

References

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Banker, S. M., Na, S., Beltrán, J., Koenigsberg, H. W., Foss-Feig, J. H., & Gu, X. (2022). Disrupted computations of social control in individuals with obsessive-compulsive and misophonia symptoms. iScience, 25(7), 104617. https://doi.org/10.1016/j.isci.2022.104617

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