On this page we will be sharing (with permission) anonymous responses to the petition that we have created to speak out against the new study by Baylor College of Medicine that suggests that accommodations make misophonia worse. You can sign the petition here: https://www.misophoniainternational.com/petition-misophonia-is-not-made-worse-by-accommodations/
Please note that this page is being updated regularly as submissions come in, and thus it is a very long page.
“This is a worrying and misleading preliminary study.”
“I am misophonic and have a lot of personal experience with my disorder, having lived in more-triggering places and less-triggering places. When my triggers are fewer and less intense on the daily, I am better able to function in situations that would otherwise be very stressful and triggering. I’m always more capable and calm when people are accommodating, I have my coping mechanisms, and the environment is non-triggering. Mysophonia is not a behavioral disorder, it is a neurophysical one, therefore treatments will not be effective if based on outward behavioral modification. The internal experience of pain, physical exhaustion, mental stress, and emotional burden must all be accounted for when working or studying misophonia.”
“Correlation does not equal causation. Accommodations help people with misophonia (like myself). We need to help children with misophonia not suggest not accommodating them. Misophonia does not get better by doing exposure therapy etc. Misophonia is not an anxiety disorder!”
“This assertion stating that accommodations made misophonia worse is completely ridiculous and I cannot believe what I have read. The removal of accommodations is cruel beyond words and effectively would sentence the person to untold suffering. After years of anguish in many cases, with accommodations, the sufferer is able to navigate the world to some degree, and life can be made liveable. There are so many hurdles that people with misophonia have to battle. This assertion is astounding in its lack of comprehension.”
“My youngest daughter, and other family members suffer with Misophonia, and I can without doubt agree that, accommodations Do Not make Misophonia worse. When my daughter was younger and we didn’t know she suffered, no accomodation was made, and it most definitely didn’t make things better… The accommodations we make as a family and also by my daughter’s school and her friends make her day to day living more bearable. Reconsiderations need to be made by these “researchers” … If it wasn’t for my (the mothers) research into this condition, my daughter would still be suffering and her life would be immeasurably miserable.”
“Having accommodations for my misophonia saved my life. I would be dead right now if I didn’t have access to noise-canceling headphones. Living with severe misophonia, a condition that causes me to be violently suicidal from hearing everyday noises, is not something I could survive without aid. My misophonia was not made worse by headphones and it saved my life when I got them. Before I had access to noise-canceling headphones, I was harming myself on a daily basis before the age of 11. The only escape I had from triggers was the few moments when my head slammed into the wall hard enough to make me dizzy and lose focus on the sound for a split second, only for the torment to begin again moments later. Noise-canceling headphones gave me the ability to participate in my own life in a way that 11-year-old me never thought I would survive long enough to do.”
“I tried to kill myself before I had access to my current accommodations.”
“I have Misophonia. It’s real, and it has to be properly researched and studied. And if you think accommodating it makes it worse you are ignorant and have no clue what misophinia really is.”
“I am horrified at the apparent conclusions drawn by this study. My son has had misophonia since he was 10 years old. The more he was subjected to triggers the worse they became. Without accommodations the damage and family conflict would be immense. The impact of misophonia is complex and a crucial part of managing it is through feeling understood even though the response to sounds appears irrational to anyone who does not suffer from it. It is vital sufferers feel supported and are helped. Aversion therapy does not work, the more exposure to triggers the more mental anguish and isolation occurs. It is damaging to believe otherwise, and studies need to explore all parameters and reasoning before putting harmful information out there.”
“I am 62 years old, I have suffered from misophonia since I was 11 and of course, never knew what it was until a few years ago. I had to cope with gum popping and every other trigger that a poor kid who is trying to learn and concentrate in school had to deal with. It was pure torture. I used to stuff little balls of toilet paper in my ears to try and block out offensive sounds. Fortunately, I still did well in school but the distractions were intense. At least in my day, gum chewing wasn’t “allowed” in school but it still happened. Help these poor kids who are dealing with this damned debilitating condition.”
“Accommodations are very much needed and helps someone suffering with this awful condition!”
“Accommodation is needed for Misophonia sufferers. If less accommodation was needed, they would not be triggered by every day events.”
“Because my Child, 9 years old and myself both have severe misophonia and we would not make it through our day without accommodations at school, home, church and in public!”
“As a sufferer of Misophonia, this new study has me completely disturbed. I have a highly severe case of Miso which includes (as mentioned in the UK Misophonia activation scale) painful, unwanted, sexual sensations set off by trigger sounds. This pain has put an entire halt to my life. And even without this particular physical pain, average Misophonia symptoms have been enough to have me down on the floor, screaming God would take me home— this is a nearly every day occurrence. Accommodations are NOT harmful. More accommodations are needed. What IS harmful is being hindered and sent backwards by studies such as this. Exposure has no benefit to us who suffer with Misophonia. If it did, we would all be healed as the world is triggering us constantly. But that is obviously, not the case. Constant exposure and lack of accommodations is what has pushed my case of Misophonia to worsen greatly in the last four years. I have become bed bound 90% of the time due to what exposure does. It is damaging, I dare say it is horrific.”
“My sons very minor accommodations during middle school and high school were helpful. Mostly just for the fact that there was one person at each school that believed he was suffering. The further accommodations we suggested (and offered to pay for) that I think would’ve helped even more, were denied because there were enough other school staff that didn’t believe misophonia was real AND if they granted him accommodations for this “questionable” condition, then wouldn’t every kid at school want accommodations for all of their “made up” conditions too? Very frustrating. I would also say the trauma he endured every day, every hour, at school has caused a great deal of harm that still is unresolved four years out of high school.”
“As an Occupational Therapist who has been working with children and adults with sensory processing challenges, and Misophonia for over 20 years. Sensory thresholds impact a person’s neurobiology and how they experience, and respond to the world around them. Those with lower sensory thresholds are more sensory sensitive, and have a higher correlation with diagnoses like anxiety and depression. People with Misophonia, experience the triggers more intensely when on sensory overload. Therefore, managing one’s sensory wellness is key to lessening the intensity of Misophonia triggers to enable the ability to function in different environments. Key to this process is the use of accommodations, which are powerful and empowering.”
“Everyone deserves the right to accommodations they need.”
“Having accommodations as a child have made my symptoms of misophonia much more manageable in adulthood rather than worse!”
“I believe accommodations need to be made for anyone with misophonia.”
“Having accommodations as a child have made my symptoms of misophonia much more manageable in adulthood rather than worse!”
“After a lifetime of living with Misophonia, I can guarantee that denying accommodations for those with this disorder only exacerbates the severity. Once living conditions are almost devoid of any offending triggers, only then does the anxiety subside and the hypervigilence relaxes. Forcing contact with the offending sounds/sights will certainly result in PTSD.”
“Because my sister has had misophonia and accommodations have helped her life.”
“Because my daughter is afflicted and this sounds like a bunch of rubbish. How could accommodations make it worse? We need to help our kids who have this condition and making certain accommodations is more than helpful.”
“I have Misophonia and Hyperacusis and I am an MD. If I fall asleep without my earplugs in, I will wake up after 3 hours, startled awake by creaking noises in the roof. This is not a psychological problem. It is a neurological problem. The specialists who understand sensory problems the best are occupational therapists. They will tell you that it is actually DANGEROUS to the organism to try to desensitize these sensory problems, due to the effect of overstimulation of the sympathetic nervous system. I would refer you to a paper by Winnie Dunn: Infants & Young Children Vol. 20, No. 2, pp. 84–101
2007 Supporting Children to Participate Successfully in Everyday Life by Using Sensory
Processing Knowledge by Winnie Dunn, PhD, OTR, FAOTA. The recommendations are to accommodate, not to desensitize. Would you tell a person who needs a wheelchair to get up and walk? No, this would be disability harassment. Failing to accommodate a neurological problem is abuse.”
“I am signing this petition because someone I love and care about suffers from misophonia. They would do just about anything not to have to worry if they could watch a movie or if the sound of popcorn being eaten would be too much of a trigger. To be able to go to a restaurant and socialize while enjoying a meal without having to find the spot most isolated from other diners (due to the sounds of chewing, lip smacking,etc) while being concerned the sounds of eating would trigger them causing them to leave long before dinner is completed. To sit in a lecture or on a plane and not have to worry that people around you will decide to crunch on chips or chew their gum loudly causing a overwhelming need to get away that makes staying near the eater impossible. People need to understand accommodations are necessary for those with misophonia. Providing less accommodation for sufferers would be detrimental and cause unnecessary suffering to people who are already suffering with a disorder that impacts so many aspects of daily living.”
“I have severe misophonia which have made my life extremely difficult. I’m 40 years old. My daughter also has misophonia which is making it difficult for her in school. When I grew up I was ridiculed, told to “stop being dramatic” and told that I was making other people uncomfortable from friends and family, which slowly made my condition worse and worse. No one was being accommodating with me. Now, with my daughter , I know what misophonia feels like, and I’m better equipped to help her. I am not a curling parent, in fact I’m quite strict, but I will never push her in regards to her misophonia. At one point she told me “mom, I don’t want to live anymore, I can’t stand the sounds”. It broke me. Misophonia is REAL suffering. This paper should be thrown in the bin.”
“There is no verifiable proof of the veracity of the claim that neurological evidence that misophonia is made worse by accommodations, therefore I feel it necessary to speak out against these junk science ‘findings.’”
“Misophonia is real and it’s hard to cope with for the person who has it. Giving children accommodations who have noise sensitivity should be no different than children with disabilities. When noises disrupt the person, they can no longer concentrate or focus on the task at hand. Giving them accommodations should be the norm.”
“Misophonia is not a condition like OCD which can be enabled by accommodations. I’ve had Misophonia my entire life and hav won’t used accommodations until recently yet my Misophonia has progressed through the years to the point where I am medically disabled. I believe it would not have progressed To this point if I had accommodations earlier in life. Accommodations for Misophonia does not enable the condition.”
“I’m 60 years old and have suffered with misophonia since I was in my mid-20’s. It’s gotten so much worse the older I’ve gotten. I wonder how much bettere I would be had there been accommodations available to me in College and in the workplace. So many times I’ve had to leave meetings or offices because certain noises trigger me, and I can’t take it. Please listen to those of us who actually live with this daily: Exposure does NOT reduce symptoms!”
“I’m signing this petition because this paper can be harmful to those seeking accommodations. I have a hard enough time seeking accommodations as it is, but when I get them, they are extremely helpful. I don’t need a paper telling me accommodations may be harmful, because that just sounds like a lie.”
“Daughter has Misophonia and I know accommodations don’t make the condition worse.”
“I am a miso sufferer and disagree with the current research done by these people. Talking to sufferers will help you understand this torturous condition.”
“I have had Misophonia since childhood (currently age 44) and without accommodations, I wouldn’t be in the workforce. The ability to be allowed to place earbuds or earplugs in my ears during a trigger sound while working has saved me from losing my job on numerous occasions. This “publication” needs to be pulled from existence.”
“It is obvious that the author of this paper didn’t do any interviews or primary research of actual sufferers of Misophonia. There isn’t a sufferer out there that would agree with these findings. I’ve had Misophonia for 50 years, and this paper makes me so angry that I actually feel sick to my stomach! The author should be ashamed.”
“I’m in my forties. If exposure therapy worked on sensory problems like misophonia, I would be getting better by now instead of worse. I absolutely require accommodations and mitigations to participate in something without being at a huge disadvantage. I don’t want other people to have the same childhood I did, being disbelieved and accused. That would be so sad.”
“Because accommodations are necessary for misophonia sufferers. Of course it’s best if we can treat it before it gets to be a bigger problem, but treatment should happen in a safe and controlled environment, not while the children are TRYING TO LEARN.”
“I suffer from Misophonia as does my daughter. In my experience making allowances for Misophonia dors not make it worse. Quite the opposite!”
“My life was hell because I used to force myself to endure my misophonia triggers when someone told me it would desensitize me. Every single day was filled with immense stress and rage and hate. My relationships with family members were horrible because I associated them with suffering and they would always see me in a horrible mental state which put them in a bad mood too. My self esteem was horrible because I genuinely thought I was a bad person for not being capable of spending a dinner without either yelling at someone or hurting myself to try to stop myself from yelling at someone or running away. Then at some point I started avoiding my triggers, because clearly years of exposure did nothing to help. I started eating away from family members, wearing ear plugs or listening to music in ear phones, and my life completely changed. I was in a better overall mood, I was able to spend time with my family and friends while being in a healthy and much more cheerful mood which made them enjoy their time with me much more, I was able to concentrate during class, and my triggers even decreased in intensity because I was overall less stressed.”
“My son has misophonia. He was in his teens before he articulated what he was experiencing, at which point I began looking into it and found accommodations that helped him immensely. It is nonsense to argue that the disorder could be made worse by accommodations and reassurance.”
“At age 65, I am a lifelong sufferer as well as a PhD in Psychology. From what I understood of this study, it is making correlational assumptions. And correlations do not mean causation. This is a neurological disorder and I can say from experience, and my knowledge of psychology that exposure will exacerbate the problem, and certainly cannot be assumed to help in any way.”
“In our lived experience, accommodations have been the only way our daughter has been able to successfully attend school and interact with her peers and community. Accommodations did not worsen her Misophonia. Accommodations make it possible for her to engage in life experiences outside our home. In our early experience with our daughter living with Misophonia we tried the “no accommodations” route, and this actually worsening her Misophonia to the point she could not attend school. After receiving accommodations she was able to return to school and just graduated from High School. I am signing this petition so that children like our daughter are not prevented from receiving much needed accommodations due to a single, small-scale study that appears limited and poorly constructed.”
“These are the questions I have asked myself as a mother of an adult child with misophonia, a misophonia sufferer myself and a therapist: How can I help my child live in a world in which sounds (and visuals) overwhelm the nervous system? How might I, as an adult enjoy the things in life that I want to enjoy, in the face of misophonia? I believe these are the questions we should be asking in psychology. Accommodations are an essential part of support. The idea that a psychologist would suggest otherwise, is counter-intuitive to the helping professions. Two words come to mind after reading this paper: behaviorist & ableist. This paper sends the wrong message to families. It sends the wrong message to children. It marks a sad day in the progress of misophonia research.”
“My daughter suffers with Misophonia. If she does not have the accommodation to leave it is painful for her. Not only emotional pain, but physical. This is not well enough researched to make the conclusion that accommodations are not helpful or worsen the condition.”
“My daughter has Misophonia and all research I’ve read says more exposure makes it worse.”
“It is so absolutely untrue it’s infuriating. The ONLY reason why my daughter is still able to attend school (vs home schooled) is because of her accommodations. Does Mr Storch have Misophonia? Highly doubtful given this idiotic, untrue, damaging piece of trash/research. We should order him to cease and desist- so he’d be unable to distribute this.”
“I found out that what I had been suffering from for so long actually had a name and I didn’t feel so alone anymore. I realized I wasn’t weird, but that there were others like me and they knew what it feels like. I have to have EarPods with extreme noise canceling in them on my person at all times to protect myself from situations that will cause severe adrenaline surges from being triggered. This is no way to live. Accommodations are absolutely necessary for many situations for children, students, single people and married people, parents, co-workers etc. having just a simple way to communicate what we have would be amazing and if it were kindly accepted that would be even better. I need accommodations. I make them for myself already because I’m an adult and have that freedom. But, for children who are afraid to tell their parents about how they feel when certain sounds happen, or any other of a million examples I could give. We need accommodations- and we need to be taught how to take ownership in using accommodations- so we can protect our bodies from too much adrenaline. We have got to do better, and you must not publish that paper. You would be setting a horrible precedent for this young condition. Is someone just trying to get themselves noticed? I would believe that. We need accommodations across all parts of society. To help people like me that have had just too much adrenaline course through their bodies and we need protection from that. We need quiet rooms, opportunities to use ear pods, opportunities to bow out of activities. There are so many more. But, we NEED accommodations, please join me in signing this petition. Force Baylor to pull back and be more responsible with their words. They are really trying to set a dangerous precedent here. More accommodations, now!!”
“I’ve lived with this condition my entire life. It’s debilitating at times because the adverse reactions cause rage, sadness, feelings of hopelessness and puts us in fight it flight mode. It affects relationships, what jobs we can work in (office settings with cubicles or neighbors is a no no UNLESS we have headphones). Something as simple as going to the movies cannot be done without shoving napkins in my ears to muffle out the sounds. Not providing accommodations will affect our mental health and it’s cruel.”
“This study is narrow and should not impact the ability for children effected by misophonia to receive accommodations. My child has misophonia AND received accommodations in school. Without these accomodations he would have been completely invalidated and suffered academically and socially, physically and psychologically . We made the mistake as a family of allowing a therapist who claimed she treated misophonia with exposure therapy treat my son. To this day, it was the most harmful experiences he has had. He wanted nothing more than for it to work and felt like a failure when it actually made him worse. We later found that there was no evidence based success to this therapy. This caused a serious lack of trust on his part for therapies and Drs in general.”
“I’ve had misophonia for 50 years and if I was able to have accommodations as a young girl and adult the direction of my life would have been much different. I’ve lived a secluded life and have developed tools that have not been successful in addressing my miso.”
“I have it and this study is incomplete.”
“This guy Dr. Storch has no idea what he’s talking about. Accommodations and validation are key parts to lowering the temperature of the reaction of people with Misophonia.”
“I have misophonia, and my challenges are worsened by triggers. In other words, exposure to the triggers heightens my misophonia. I succeed with accommodations; I’d fail without them.”
“I am signing the petition to support accommodations for people with misophonia.”
“I support misophonia rights.”
“It is very disheartening that a study would suggest that accommodations worsen misophonia and potentially damaging to those who suffer from this neurological disorder. At 68 years old I have suffered most of my life, yet until just several years ago had no name or full understanding of it as a disorder that others also suffered from. I felt that I was crazy and often prayed to go deaf to shut out all potential triggers rather than continue to suffer the anguish, anger and painful response I experienced to certain sounds. It got worse over time with expanding triggers while I was afforded NO accomadations yet attempted to create my own unsuccessful attempts to block and avoid offending sounds and situations where they were present. Given so many other studies which have explored, documented and look at potential causes and treatments, it is clear that it is a neurological based disorder like other sensory processing disorders and exposure Does Not lead to improvement. I am so thankful for others that there is more understanding that accommodations are for many suffers helpful and needed to allow them to be able to lead lives with some maxim of reduced stress and ability to have productive lives. To go backwards on the accepted approach would be cruel, dangerous and unethical.”
“The conclusions of this study seem unsupported by the data presented, and potentially damaging to those who suffer. To make a treatment based conclusion based on a small pool of extremely varied subjects seems irresponsible.”
“I have Misophonia and I disagree with that paper.”
“Misophonia is not made worse by accommodation”
“Misophonia is an important topic and I believe by taking away accommodations, it will only have a negative impact on those who suffer from Misophonia.”
“I have misophonia and accommodations in college and the work place have given me such relief over the years.”
“This research is faulty. It seems painfully evident that no one on the research team actually has misophonia. The correlation between accomodations and miso being worse is false. All this study proves is that, since misophonia occurs on a spectrum of severity, the more severe symptoms one has, the more accomodations they need. Shame on this (these) researcher(s) to try to publish this misleading information that diminishes the impact misophonia has on a person’s life.”
“One study is not enough evidence to confirm whether or not accommodations help or hurt a person with Misophonia. Did this study include the severity of each person’s Misophonia before accommodations were put into place to be able to accurately compare whether the accommodations were having a positive or negative impact on each individual’s symptoms? There is much more research work needed before taking away any person’s accommodations. I do not agree that enough research has been done or that anything has been properly proven at this point.”
“My 13 year old has miso and has since he was 6. We have been to every doctor and specialist and no one could diagnose him. He has been punished for years because we thought he was just being stubborn.”
“I have this awful disease and accomadation is what students asap need! We cannot ignore the trigger.”
“I was not accommodated at all as a child with misophonia. I grew up in the 1960s and as far as I know nobody knew at that time about misophonia. I was not only not accommodated but I was laughed at by my parents every time I asked them to stop (smacking, chewing ice, popping gum, etc.). They got much entertainment from my misery. I was never accommodated in work places either. At one job, I worked in a cubicle with co-workers very close to me. One of them popped gum incessantly all day long every day. I asked my supervisor for a solution to the problem and the solution never appeared. Fast forward to the current day and my misophonia is not a bit better than it was 55 or so years ago. There must be some flaw with the study and I would hope that you would think of doing the study again with only people who suffer from misophonia.”
“If it wasn’t for misophonia accommodation, I wouldn’t have graduated high school. I graduated, with not even a 1.5 GPA. If I didn’t have my accommodations, I would have been a drop out. If you care about kids at all, you would understand their needs and do something about it. If you don’t struggle with something, it is not your place to say what should be done with it. if I didn’t have misophonia at all, I wouldn’t have had any struggles graduating.”
“My child has misophonia. Without accommodations, she would have been unable to function.”
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I have had Misophonia for over 35 years. I am educated to Masters level and a Consultant Nurse in the NHS. I have tried CBT, and various other interventions and strategies such as consuming less caffeine, distraction, exercise etc. the only thing that eases this condition for me is listening to music when in environments where I cannot remove myself. Without this I would become a recluse. Please do not try to take this away from people who need it. You would ruin lives.”
“I didn’t understand what was happening in my brain until I was in my mid 20s. That’s when I finally learned the word Misophonia. I’ll never forget where I was when my mom texted me an article about it. I cried for hours. It was so incredibly empowering and helpful to know that I wasn’t alone. It also helped me to understand what I experienced and what accommodations could be made. I now have the language I need to talk to my family, friends and colleagues about it. These accommodations help me to thrive. I use to live with constant uncertainty and anxiety that a trigger could disrupt my day. And now with proper accommodations I move through life with more ease. We need more awareness. We need more research. But it needs to be done by the right people, with the right intention and accurate understanding of what our needs are and what Misophonia really is.”
“If I had access to accommodations sooner in life, getting through my education would have been much easier. I would have been self confident enough to work through my issues instead of hiding from them.”
“I am signing this petition on behalf of my son, 15, who has suffered from Misophonia since the age of 11. His accommodations have saved his life and ours. In no way should anyone respect this extremely dangerous study. Misophonia is already hard enough for most to understand, and now this study comes along acting as an authority on the subject that they obviously know nothing about? Please ask sufferers of Misophonia. They are the authorities.”
“My daughter has suffered with misophonia for 35 years. Without her accommodations I believe she would have been suicidal.”
