“Misophonia, I try to equate to an allergy. It’s not a phobia, it’s a neurological sensory thing. And so there’s a difference between ‘I don’t like peanuts’ and ‘I’m allergic to peanuts.’”

Cris Edwards

Today’s guest is Cris Edwards, founder of soQuiet, a nonprofit that offers advocacy, support, and resources for people who suffer from misophonia. Cris sits down with Staci to discuss the struggles of growing up with undiagnosed neurodivergence, how people can make and seek accommodations for individuals with misophonia, and the importance of believing everyone’s lived experiences.

• Cris’s K-12 story
  • Grew up in San Antonio
  • Organization is about sensory disorders and neurodivergence
  • That wasn’t on the radar back in the 70s and 80s, so his grades suffered. 
  • Looking back he can understand why
  • Overall his experience was pretty good.
  • Was in the gifted and talented program
  • Grades weren’t great but nobody could understand why
  • In his 40s he was diagnosed with ADHD 
  • The organization is about misophonia
  • Went to college and grad school
• What is misophonia?
  • A term that was coined in 2001 by a pair of audiologists to describe a sound sensitivity that nobody had described before
  • miso=hatred; phony=audio; aka “hatred of sound”
  • It’s not a universal hatred of sound
  • It’s a specific sensory disorder that is a real thing and has been researched a lot in the past few years
  • It’s where people have an emotional or physiological response to pretty normal but not necessarily loud sounds
  • People hating the sound of people chewing, tapping, etc.
  • Has a visual to it as well
  • Frision – a euphoric feeling that people can experience when listening to music
• What does it mean to be neurodivergent?
  • There is variance in nature, everybody is different. And the natural variance in nature isn’t necessarily a pathological condition
  • So many people with misophonia are also highly intelligent, creative, etc. musically and graphically
  • “Neurodivergence is this movement to respect and appreciate and accommodate for people whose brains work differently than your typical person.” 5:38 – 5:47
• What are some ways that neurodivergence show up in people? Or what is the way in which it presents?
  • ADHD, bipolar disorder, autism, and misophonia kind of fits in there. 
  • Based on brain scans and research, we know that they’re different than other people.
  • These can show up in childhood and they can have labels applied to them for this, but they might just be more traits than actual disorders in a lot of the population.
  • When we talk about disability rights, it’s important to include neurodivergent
• Does being neurodivergent automatically mean that someone is autistic?
  • No, their minds just work a little differently
  • There’s a lot of different “conditions” that follow the neurodiversity umbrella
• What is soQuiet?
  • 501c3 Nonprofit
  • Cris’s background is in theater, so when he moved to St. Louis, he was working in the theater and then the pandemic happened. 
  • He took this time to grow the misophonia nonprofit that he had been thinking for a long time
  • Recent research shows that as many of ⅕ symptoms that are valid for misophonia
  • soQuiet, based out of St. Louis, provides services nationwide/worldwide
  • “Just finding out that there’s a word for this thing that you’ve been struggling with for so long is so validating.” 
  • Not many treatments that are proven yet, but it’s the kind of thing that you can cope with and can live with.
• How did having misophonia affect you as a child in the classroom?
  • That’s one of the main reasons I started soQuiet – because I didn’t want anyone to suffer like I did
  • I was capable of getting good grades, but I couldn’t, and nobody could understand why
  • He remembers being in class and someone would open a bag of chips or chew gum and nobody else would be distracted by those sounds like hew as.
  • His grades suffered and, looking back, it affected everything he’s done. 
  • He’s quit jobs over this, ended friendships, etc.
  • Can’t go to a movie theater – because of people eating popcorn
• How can accommodations help you? 
  • It’s important to understand how misophonia affects people. 
  • “Misophonia, I try to equate to an allergy. It’s not a phobia, it’s a neurological sensory thing. And so there’s a difference between ‘I don’t like peanuts’ and ‘I’m allergic to peanuts.’”  13:12 – 13:28
  • You can’t just “get over it”
  • The ADA has a very broad, basic definition of what qualifies as a disability. It’s any condition that affects their life to a degree that they can’t participate in life activities. 
  • By that definition, misophonia qualifies as a disability.
  • Maybe accommodations could be permission to take tests in a calm environment, zoom learning, using earplugs, etc.
  • It requires some understanding from teachers, administrators, and parents to recognize that the student is really struggling

• Are there instances where accommodation for one student can make the classroom in general a better place for all students?
  • Yes, it can in many instances
  • For example, closed captioning helps
  • It makes for a less distracting environment
  • There is the possibility for conflicting accommodations
  • People with autism, anxiety disorders, ptsd, etc, they often need to do things that may be triggering to someone with misophonia (i.e. a fidget gadget).
• How do you help parents and teachers learn how to support their children?
  • There are “diagnosis criteria”, and you can also self-diagnose, but misophonia is in a weird time where there’s a word for it and there’s research being done, but there’s not an official diagnosis that can be obtained – soQuiet is working on that.
  • You have to be an advocate as a teacher, parent, spouse. You can teach people the word, because there is a hurdle of disbelief for some people
  • After that, you have to advocate and speak up for yourself, which is really difficult
  • soQuiet writes letters for students and individuals to get accommodations all the time
    
• How do parents advocate for their child if they are misophonic or have any other neurodivergent condition?
  • Any school will have someone in charge of fielding those kinds of requests
  • The first thing to do is make the decision to approach the school
  • You can request a 504 plan or an IEP (individualized education program)
  • A parent or a guardian can approach the school and request accommodations like wearing noise-canceling headphones during a test
• What do you recommend for the families with fewer resources to get their child what they need? How do you get people to respect these accommodations without making it about the child getting “special attention?”
  • It’s important to BELIEVE someone approaching you with their lived experience.
  • Everything soQuiet offers is done for free, and they can add some credibility to requests for accommodations
• What words of advice do you have for parents who are struggling with neurodivergent conditions and are wanting to keep their kids in a mainstream environment?
  • Advocacy and advocating for your child is exhausting
  • First of all, it starts at home
  • Providing as best of an environment as possible at home helps 
  • Outside of that, there’s a meeting in the middle that can happen with the schools
  • It’s very simple, basic things that are typically asked for
  • It’s just doing the best you can with what you have
    
• What is the key thing that their parents should recognize when seeking a diagnosis?
  • Access to accurate information is really valuable
  • If someone is bothered by loud noises, that’s a different disorder and an audiologist can diagnose it
  • And there are other sensitivity disorders
  • It’s how it affects your life
• How do people get connected to soQuiet
  • Soquiet.org
  • They offer free classes online, research grants, advocacy letters, or even just to talk
  • Starting peer support groups