Misophonia As Kids Age

Parents may be concerned that their child with misophonia will not grow up to live a normal life, and won’t be able to focus in school, or receive a conventional education. Parents can rest assured reading the following stories from High School students, as well as the following articles listed. As persons with misophonia grow, if they utilize their coping skills they can maintain a normal and fulfilled life. At the bottom, you will find links to other life stages of sufferers that you may be curious of.

Misophonia is not a life sentence, it is merely a part of your child’s life that can be maintained.

While there are various life challenges, this does not mean that life stages are not possible. Your child can learn coping techniques, work with OT and other professionals, and learn to embrace their uniqueness! There is also great hope for a potential treatment, and involvement in research and advocacy can help both you and your child to

 

 

What Is SPD and How Does It Relate To Misophonia?

Would you explain the more recent conceptualization of Sensory Processing Disorder? 

In the 1980s, other scholars proposed that defensiveness exists in other sensory channels, and several other types of sensory defensiveness were labeled and described, including auditory (sounds), visual (sights), and olfactory (smell).  Because the protective and the discriminative tactile systems address only tactile defensiveness, and not defensiveness in the other sensory channels, the more recent scholars theorized that the amygdala is the filter, with the inhibitory fibers not overriding the excitatory fibers. The excitatory fibers are constantly firing, thereby letting in the unimportant information so a person is wired for fight, flight, or freeze. The sympathetic and the parasympathetic nervous systems are not balanced. These scholars suggested using activities that provide deep pressure and slow, linear movement to help the inhibitory fibers override the excitatory fibers.

Moving into the 21st century, Dr. Lucy Jane Miller coined the terms more commonly used today. Sensory Integration Disorder is now referred to as a Sensory Processing Disorder (SPD), which is an umbrella term with three primary diagnostic categories: (a) Sensory Modulation Disorder (SMD), (b) Sensory Discrimination Disorder (SDD), and Sensory-Based Motor Disorder (SBMD). Each diagnostic category has subtypes.

SMD has three subtypes: (a) Sensory Over-Responsivity (SOR), (b) Sensory Under-Responsivity (SUR), and sensory craving (SC). Persons can have SOR, SUR, and/or SC in one or more of the various sensory channels. Sensory channels include: auditory (sounds), visual (sights), tactile (touch), pain, olfactory (smells), gustatory (tastes), proprioception/vestibular (position/movement), air temperature (hot or cold), and interoception (e.g., hunger pangs). Persons with SOR perceive the input from one or more of the sensory channels as noxious, harmful, or threatening.  For example, a child with an auditory over-responsivity might cover his ears when someone whistles or jangles his keys. In contrast, persons with SUR barely perceive the input from one or more of the sensory channels. For example, a child with bumps and bruises might feel little pain. And a person with SC seeks input from one or more of the sensory channels. Examples include a child touching and/or smelling objects as he walks through a room, a child who seeks movement having difficulty sitting still, and a child who seeks proprioceptive input (pressure) intentionally bumping into things, including people.

SDD has six subtypes: (a) Auditory, (b) Visual, (c) Tactile, (d), Taste/Smell, (e) Position/Movement, and (f) Interoception

SBMD has two subtypes: Dyspraxia and Postural Disorder. Persons with dyspraxia (poor motor planning) have problems doing new or unfamiliar tasks such as learning to tie shoelaces. They do not learn to tie the shoelaces automatically (without thinking), and when they feel stressed, the task of tying is even more challenging. Postural disorders include poor balance and low muscle tone.

Do only children have Sensory Processing problems? 

Sensory processing disorders cannot be cured. Therefore, adults have sensory processing disorders. Many adults were not diagnosed as children, however.

Would you explain how SPD might relate to Misophonia sufferers? Is there a specific subtype that might overlap?

Misophonia and auditory over-responsivity might overlap. (Note: SPD is used interchangeably with the term auditory over-responsivity. To be in sync with others, I will use the term SPD when referring to a sensory modulation disorder, including auditory over-responsivity.)

Misophonia is a strong dislike or hatred of specific sounds. Persons with misophonia dislike, soft or loud repetitive sounds, especially sounds made by the mouth. Triggers include chomping food, slurping a drink, snapping gum, humming, and whistling. Other triggers include opening a bag of chips, cracking knuckles, and texting with the volume on. (Note: Sounds are not triggers when the person with misophonia makes them. Sounds are triggers when another person makes them.)

When exposed to a trigger, persons with misophonia feel anger, disgust, and hate. In contrast, persons with hyperacusis feel pain from loud and/or high-pitched sounds such as sirens and alarms, screeching breaks on subways or buses, silverware clanking against dishes, children’s screams, and clapping. Some loud, repetitive triggers overlap with the triggers for misophonia. For example, silverware clanking against dishes is listed as a trigger for each condition.

Persons with SPD dislike all of the above sounds. The emotional manifestations (anger, disgust, and hate) and the behaviors (fight, flight, or freeze) of persons with misophonia and SPD seem similar.

Some persons diagnosed with misophonia are reported to have visual sensitivities in addition to their auditory sensitivities. The term misokinesia has been used to mean a hatred of movement. Persons with misokinesia strongly dislike seeing movements such as someone twirling her hair around and around her finger, someone moving his leg up and down while sitting, and someone chewing food or gum with his open mouth.

Persons with SPD typically have problems in more than one sensory channel; therefore, over-responsiveness to inputs such as visual and tactile in addition to auditory over-responsivity suggest SPD. However, the auditory sensory channel might be the only sense affected in SPD. Therefore, the question of whether misophonia and SPD are linked needs to be investigated. Please bear in mind that the current lack of research does not rule out a potential link between these two conditions.

SPD is thought to be a neurodevelopmental condition, meaning that it a disorder within the brain that affects emotions, self-control, attention/memory, and learning throughout the lifespan. Research is ongoing; however, the neurobiological mechanisms and the implicated structures in the brain are not well documented. The etiologies (causes) are unknown, but a genetic vulnerability is possible in some persons with SPD. Fewer studies exist for misophonia. Whether this condition is neurological or learned from experiences is controversial. Research is needed to investigate the similarities and the differences between SPD and misophonia and to investigate the possible co-occurrence of these conditions.

The potential exists that some persons have been misdiagnosed, and an incorrect diagnosis could lead to the wrong treatments, which could worsen the symptoms. The causes of misophonia and SPD could be different. Causes guide treatments. Therefore, research to find the causes for misophonia and SPD is important.

By Susan Nesbit, OT

Dr. Brout’s Reading List

Dr. Jennifer Jo Brout’s Cross-Disciplinary Book List for Understanding Misophonia 

Misophonia is a complex disorder that involves (and calls for) research and understanding across different medical and therapeutic fields. Like many disorders, understanding yourself (or your child) from various neurophysiological and emotional perspectives is empowering and helpful. This is especially true as so many disorders cross over with one and other. In addition, disorders are often called by different names within different fields. This list is comprised of some the books that I have found most useful to adults, parents and therapists along the way (and that I have found most useful for myself). Please feel free to write with suggestions and books will be added.

 

Sensory Rooms

Sensory rooms are kind of like a mixture of a therapy room, playroom, and a spa! Designed for relaxation, sensory rehabilitation – and to be a relaxing and fun experience! These rooms are designed with the owner in mind, to help them recuperate and cope with their sensory disorder.

Occupational Therapy and Sensory Diet For Kids

Misophonia Occupational Therapy could be beneficial to misophonia sufferers.

Susan Nesbit suffers from Misophonia. She is also an OT that works with Sensory Processing Disorder (or SPD). Susan Nesbit speaks about Misophonia Occupational therapy from the point of view of both a misophonia sufferer and OT, and brings an interesting perspective to the sensory conversation.

Misophonia Occupational TherapyWould you explain the A. Jean Ayres original theory of Sensory Integration (in just a few very general sentences)? 

In the 1960s, Dr. Ayres described Sensory Integration Dysfunction (SID), including tactile defensiveness. She suggested that children who over-react to touch (e.g., they do not like getting their hair and nails cut, will not wear certain textures of clothes, and avoid activities such as finger painting) have a protective tactile system that is always on. The discriminative tactile system (e.g., knowing that you’re feeling the keys in the bottom of your purse without looking at them) is not overriding the protective tactile system, and the unimportant tactile information does not get filtered out. With the bombardment of protective tactile information, the child with tactile defensiveness is in a pattern of fight-or-flight (e.g., he is unable to sit still and feel the keys in his hands). Dr. Ayres further proposed that activities with deep pressure (e.g., hugging and jumping) enable the discriminative tactile system to override the protective tactile system so the unimportant tactile information can be filtered out and the child can be available for learning.

Imagine a child with tactile defensiveness playing on a seesaw. The seat with the protective tactile system (sympathetic nervous system) stays up, causing the child to flail (to wildly swing his arms and legs) with anger and other negative emotions. The seat with the discriminative tactile system (parasympathetic nervous system) does not go up, so the child is unable to enjoy the seesaw. Children need to balance the seesaw by alternating the seat for the protective tactile system going up (so they can run if they see a fire) with the seat for the discriminative tactile system going up (so they can sit still without flailing, and they can have fun and learn in a safe environment).

Would you explain the more recent conceptualization of Sensory Processing Disorder? 

In the 1980s, other scholars proposed that defensiveness exists in other sensory channels, and several other types of sensory defensiveness were labeled and described, including auditory (sounds), visual (sights), and olfactory (smell).  Because the protective and the discriminative tactile systems address only tactile defensiveness, and not defensiveness in the other sensory channels, the more recent scholars theorized that the amygdala is the filter, with the inhibitory fibers not overriding the excitatory fibers. The excitatory fibers are constantly firing, thereby letting in the unimportant information so a person is wired for fight, flight, or freeze. The sympathetic and the parasympathetic nervous systems are not balanced. These scholars suggested using activities that provide deep pressure and slow, linear movement to help the inhibitory fibers override the excitatory fibers.

Moving into the 21st century, Dr. Lucy Jane Miller coined the terms more commonly used today. Sensory Integration Disorder is now referred to as a Sensory Processing Disorder (SPD), which is an umbrella term with three primary diagnostic categories: (a) Sensory Modulation Disorder (SMD), (b) Sensory Discrimination Disorder (SDD), and Sensory-Based Motor Disorder (SBMD). Each diagnostic category has subtypes.

SMD has three subtypes: (a) Sensory Over-Responsivity (SOR), (b) Sensory Under-Responsivity (SUR), and sensory craving (SC). Persons can have SOR, SUR, and/or SC in one or more of the various sensory channels. Sensory channels include: auditory (sounds), visual (sights), tactile (touch), pain, olfactory (smells), gustatory (tastes), proprioception/vestibular (position/movement), air temperature (hot or cold), and interoception (e.g., hunger pangs). Persons with SOR perceive the input from one or more of the sensory channels as noxious, harmful, or threatening.  For example, a child with an auditory over-responsivity might cover his ears when someone whistles or jangles his keys. In contrast, persons with SUR barely perceive the input from one or more of the sensory channels. For example, a child with bumps and bruises might feel little pain. And a person with SC seeks input from one or more of the sensory channels. Examples include a child touching and/or smelling objects as he walks through a room, a child who seeks movement having difficulty sitting still, and a child who seeks proprioceptive input (pressure) intentionally bumping into things, including people.

SDD has six subtypes: (a) Auditory, (b) Visual, (c) Tactile, (d), Taste/Smell, (e) Position/Movement, and (f) Interoception

SBMD has two subtypes: Dyspraxia and Postural Disorder. Persons with dyspraxia (poor motor planning) have problems doing new or unfamiliar tasks such as learning to tie shoelaces. They do not learn to tie the shoelaces automatically (without thinking), and when they feel stressed, the task of tying is even more challenging. Postural disorders include poor balance and low muscle tone.

Do only children have Sensory Processing problems? 

Sensory processing disorders cannot be cured. Therefore, adults have sensory processing disorders. Many adults were not diagnosed as children, however.

Would you explain how SPD might relate to Misophonia sufferers? Is there a specific subtype that might overlap?

Misophonia and auditory over-responsivity might overlap. (Note: SPD is used interchangeably with the term auditory over-responsivity. To be in sync with others, I will use the term SPD when referring to a sensory modulation disorder, including auditory over-responsivity.)

Misophonia is a strong dislike or hatred of specific sounds. Persons with misophonia dislike, soft or loud repetitive sounds, especially sounds made by the mouth. Triggers include chomping food, slurping a drink, snapping gum, humming, and whistling. Other triggers include opening a bag of chips, cracking knuckles, and texting with the volume on. (Note: Sounds are not triggers when the person with misophonia makes them. Sounds are triggers when another person makes them.)

When exposed to a trigger, persons with misophonia feel anger, disgust, and hate. In contrast, persons with hyperacusis feel pain from loud and/or high-pitched sounds such as sirens and alarms, screeching breaks on subways or buses, silverware clanking against dishes, children’s screams, and clapping. Some loud, repetitive triggers overlap with the triggers for misophonia. For example, silverware clanking against dishes is listed as a trigger for each condition.

Persons with SPD dislike all of the above sounds. The emotional manifestations (anger, disgust, and hate) and the behaviors (fight, flight, or freeze) of persons with misophonia and SPD seem similar.

Some persons diagnosed with misophonia are reported to have visual sensitivities in addition to their auditory sensitivities. The term misokinesia has been used to mean a hatred of movement. Persons with misokinesia strongly dislike seeing movements such as someone twirling her hair around and around her finger, someone moving his leg up and down while sitting, and someone chewing food or gum with his open mouth.

Persons with SPD typically have problems in more than one sensory channel; therefore, over-responsiveness to inputs such as visual and tactile in addition to auditory over-responsivity suggest SPD. However, the auditory sensory channel might be the only sense affected in SPD. Therefore, the question of whether misophonia and SPD are linked needs to be investigated. Please bear in mind that the current lack of research does not rule out a potential link between these two conditions.

SPD is thought to be a neurodevelopmental condition, meaning that it a disorder within the brain that affects emotions, self-control, attention/memory, and learning throughout the lifespan. Research is ongoing; however, the neurobiological mechanisms and the implicated structures in the brain are not well documented. The etiologies (causes) are unknown, but a genetic vulnerability is possible in some persons with SPD. Fewer studies exist for misophonia. Whether this condition is neurological or learned from experiences is controversial. Research is needed to investigate the similarities and the differences between SPD and misophonia and to investigate the possible co-occurrence of these conditions.

The potential exists that some persons have been misdiagnosed, and an incorrect diagnosis could lead to the wrong treatments, which could worsen the symptoms. The causes of misophonia and SPD could be different. Causes guide treatments. Therefore, research to find the causes for misophonia and SPD is important.

Would you explain how Occupational Therapists have been involved with SPD kids and adults, as clinicians?

Occupational therapists evaluate for SPD with informal tests (observations and interviews) and with formal tests that are standardized for validity and reliability. Formal tests include the Sensory Profiles and the Sensory Processing Measures. These two batteries of tests use age-appropriate and environmentally appropriate (home versus the classroom) forms.

Occupational therapists have been treating children and adults diagnosed with sensory integration disorder (SID), now called sensory processing disorder (SPD), since the 1960s. Some persons come for intervention in a sensory gym with a variety of swings, climbing structures, balls, bolsters (rolls), mats, and other equipment to provide body movement and proprioception (deep pressure). The other sensory systems are treated as well. For example, sensory bins are used for persons with tactile problems.

Occupational therapists work with students in schools, giving teachers suggestions to help students with SPD stay on task. Suggestions include providing movement by sending the student on errands such as taking the class attendance to the office and/or allowing him to sharpen the pencils; providing movement while sitting by using a wobble chair or a standard chair with a wobble cushion; providing pressure against the student’s torso (trunk) by allowing him to sit backward in his chair; providing movement and pressure on different body parts by allowing the student to switch positions (e.g., alternating between a sitting position – including sitting on his legs, a standing position, and stomach lying on the carpet); and providing structured fidgeting by allowing the student to rub his hand(s) across Velcro taped inside the top of the desk, twist the pieces at the top of a fidget pencil, play with a fidget toy, and/or press his feet against TheraBand tied around the legs of his desk, in some situations you might consider to cure smelly feet to make this more comfortable for you.

Occupational therapists also work with parents, giving home programs with sensory activities and making suggestions for modifying (changing) the home environment. The goals of classroom and home modifications are to reduce the number of noxious stimuli and to provide ways to stay calm or regain composure when triggered.

SPD has no cure. However, the symptoms can be temporarily lessened through a variety of treatments, including sensory diets. Similar to a diet of food, the input from a sensory diet does not last indefinitely in the body. The input lasts 1-2 hours, or less when stressed by noxious stimuli.

Sensory diets include activities for pressure and movement. Activities can include hiking, walking, or running; doing animal walks (e.g., elephant, bear, rabbit, frog, duck, and crab); wheelbarrow walking; floor or chair pushups; “play” wrestling; bouncing on a hopper ball (they come in adult sizes); jumping (e.g., up and down with both legs together or jumping jacks) on the floor or a mini-trampoline (use a regular trampoline if one is available); playing on a variety of swings, climbing structures, and slides; doing yoga (classes and books/flash cards are available for adults and children); using fidget toys; manipulating Play-Doh or modeling clay; and coloring mandalas (beginning at the center). Doing heavy work, including taking out the garbage, mowing the lawn, carrying the laundry, and pushing furniture to vacuum, can be included in a sensory diet.

Would you explain from your perspective what might be happening to a person with misophonia when they feel “overloaded” ?

I am a pediatric occupational therapist, and I have misophonia and SPD. To avoid becoming overwhelmed by triggers, I control my environment as much as possible. For example, I ask persons not to whistle or crack their knuckles. I leave the room if someone is chomping food. I have been called controlling; however, the alternative is melting down or shutting down.

When initially triggered, I typically remain calm. I can think and be proactive. I can stay calm until the frequency (number) of the triggers increases, the intensity (strength) of just one trigger increases, and/or the duration (length of time) of just one trigger extends. When the triggers accumulate, I become overwhelmed.

When I become overwhelmed, I am unable to think and I become reactive. I have an “adult” meltdown by snapping at the person whom I view to be noxious or by crying. I try to save my crying until I am alone, but I’m not always successful. If I don’t have a meltdown, then I shut down (withdraw) and I do not listen.

I can become overwhelmed with sound triggers alone, but with the addition of other triggers – sights, smells, being hot, and/or being hungry – I more easily become overwhelmed and I have a bigger meltdown or I withdraw more deeply. I experience what I call the “additive effect,” which I’ll describe later in a different question.

Do you think there are ways OT’s can help people with Misophonia in terms of helping calm down when they feel “rage” or “fear” or “overloaded”? 

For persons with SPD, and possibly with misophonia, I suggest using a sensory diet (examples given above). When I’m unable to leave the negative situation to do some of the activities such as walking, I hug myself by squeezing my torso with my arms crossed, and I cross my legs at my knees and my ankles (I’m flexible). Sometimes I clasp my hands together and squeeze – under the table when possible – I try to be inconspicuous. (Note: I’ve successfully explained to social workers and psychologists who work with persons with SPD that by crossing my arms around my body and by crossing my legs, I’m not communicating that I’m closed to them and not listening. Instead, through the pressure provided in these positions, I can remain calm to listen.)

I also try to reframe my negative thoughts by thinking about something positive; e.g., this meeting will be over in 15 minutes and then I’ll get a gourmet coffee. Sometimes, sounds that I enjoy are mingling with the sounds that I hate, and I try to focus on the sounds that I enjoy. For example, if someone is triggering me on the NYC subway, I’ll try to listen to the wheels moving along the tracks. Sometimes I visualize walking in a forest surrounded by the sounds that I love (e.g., a waterfall gliding over the rocks into a pond, the rustle of the pine needles under my feet, and the singing birds perched in the trees). I visualize watching the white, fluffy clouds moving across the cerulean-blue sky. I stop to smell the roses. I feel the rain on my skin. Sometimes I breathe deeply, counting as I inhale and exhale. Sometimes I progressively relax my muscles. But when I’m tipped over the edge and I cannot think, visualizing the triggering person getting run over by a tractor-trailer truck is helpful. (Note: Reframing, mindfulness, visualization, deep breathing, and progressive muscle relaxation, work for me only when the triggers are few, not intense, and not lasting a long time.)

We know that seeing an OT for therapy is the best option because therapy is personalized. However, are there any general concepts related to sensory overload that might help people with misophonia cope in their daily lives? 

Sensory information accumulates. Imagine a set of triggers: You’re at a low level of arousal and your alarm clock rings. You push the snooze button and it goes off again in only 5 minutes, and you’re still tired. You get out of bed and step on a toy. You go to make coffee and discover that you have no cream. You pick up the cereal box and it opens on the bottom, spilling onto the floor. Your child will not get dressed. You finally leave the house and back the car out of the garage, hitting your child’s bicycle. By now, even a person without misophonia or SPD might be on a high level of arousal (sensory overload). Before driving you car, try to take a break to reset your level of arousal from high to normal.

To describe what I call the additive effect, I’ll use my auditory and visual triggers in a mathematical equation. I’ll give a score of 2 (for mathematical purposes only; I’m not using a scale to rate how much I hate the trigger) to hearing someone chomping his food. And I’ll give a score of 2 for seeing that person chewing with his mouth open. In this scenario, 2 + 2 does not equal 4. Instead, 2 + 2 equals 5.

Along the same lines are there any easy-to-do techniques that people might be able to learn that might help them manage?

When possible, modify your environment to reduce the frequency  (number), the intensity (strength), and the duration (length of time) of the triggers. Modifying the environment is helpful for persons with misophonia and/or SPD.

For persons with SPD, I gave examples of activities for a sensory diet in an earlier question. Identify the sensory activities that work best for you. Do a sensory diet for 5-10 minutes. Because the sensory activities are part of a diet, you may need to do them every one-two hours. You may need to do them more often if triggered. Another easy-to-do technique is self-hugging, as described in an earlier question.

Bear in mind that if the cause of misophonia is different than the cause of SPD, then a sensory diet may not be effective for misophonia. Some scholars speculate, however, that misophonia also could be neurologically based, and perhaps the same structures in the central nervous system (the brain) are involved.

In the next question, I’ll recommend a book in which the authors provide ideas to help you determine your level of arousal – low, normal, or high. The authors teach you to identify “how your engine runs.” You will learn, for example, to identify when you’re approaching a high level of arousal, which means that you’re approaching sensory overload. The authors also guide you to identify the sensory activities that could work best for you. (Note: A caregiver can use this book to help children with SPD.)

If you live with a person with misophonia or SPD, I suggest allowing that person to have control, or at least perceived control, to create a structured and supportive environment. By perceived control, I mean giving choices; however, every choice is acceptable to you. In an example: You need to do two errands and take your child along. You know that she dislikes the noises in the stores. You can give her the choice of which store she’d like to go to first. You can say, “I know you hate shopping (empathy); however, we need to shop for dinner and buy daddy a new hammer. Which store would you like to go to first? The grocery store or the hardware store? You are setting limits with two acceptable choices. You also can problem solve together by asking her how she can cope (be less angry) with the noise. Bear in mind that persons with misophonia and SPD are controlling to reduce the triggers (noxious stimuli) to prevent sensory overload.

Recommended Websites:

http://spdfoundation.net

The SPD Foundation leads the word in research, education, and awareness for Sensory Processing Disorder (SPD). You’ll find many gems by surfing this website. The topics include: (a) treatment for SPD, (b) research findings, (c) resources such as downloadable flyers (e.g., tips to build resilience in a child with SPD, a symptoms checklist, and a sensory diet with summertime tips), books (e.g., books written for children to help them understand SPD), (d) links to websites selling merchandise, and (e) news.

http://www.alertprogram.com

This website offers a one-page PDF handout explaining the Alert Program. They sell a book called “How Does Your Engine Run: A Leaders Guide to The Alert Program for Self-Regulation.” This book has step-by-step instructions and activities to identify and change how alert a person feels (level of arousal). Many therapists, teachers, and parents have taught themselves how to do the program by reading this book. The program can be used to help others or yourself.

http://www.thesensoryspectrum.com/sound-sensory-overload-may-like-child/

This website has a video that simulates being on “sound sensory overload.” This video helps persons who do not live with this disabling condition experience the sensations. This website also sell items that can be used in a sensory diet.

Recommended Books:

A thorough list of books can be found on the website for the Sensory Processing Foundation.

Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD) – Revised Edition, by Lucy Jane Miller and Janice Roetenberg.

No Longer A SECRET: Unique Common Sense Strategies for Children with Sensory or Motor Challenges, by Doreit Bialer and Lucy Jane Miller.

Download Sensory Diet For Kids

Misophonia From A Mom’s Perspective

Misophonia: When your child suffers from sensory issues

As a mother, what was it like discovering your son has Misophonia?

IMG_8345Truthfully, it was both joyful and devastating if that makes sense. The joy was that we finally found out we were not alone and that this was an actual condition.   Shortly after the joy, came the pain.  The pain of knowing this was, in the eyes of the medical community, an obscure condition.  Little was known, few recognized it and the prognosis was not good with few treatments available and chances of success with them fairly low.   Every parent wants their child to be successful and happy and I think you go through a grieving period when you find out that this is going to be far more difficult than you ever imagined for them.

Has it been hard to adjust?
It’s like both your entire lives revolve around misophonia.  It’s constant accommodating and as a parent, who is the main trigger, you are constantly walking on eggshells and he, as a child who loves you so much, is ridden with guilt.

How far do you go to accommodate your son?
There are many accommodations. The one thing I know and am cognizant of is that he doesn’t want to be this way and we’ve learned despite people telling me otherwise, that being tough and exposing someone to triggers does not work and is truly a horrifying experience.  We eat separately, we only go to restaurants if he is in a particularly good frame of mind and feels he can cope with it and he still sits at a different table by himself or with a friend. I’ve moved his bedroom from one side of the house to another in order to give him some peace in the summer because people are active outside in their pools and hot tubs. We have lots of headphones.  I attempt not to yawn ever in front of him or cough if at all possible.  I pin my bangs out of my face when he’s with me because a visual trigger is me moving my hair out of my face.  For appointments and trips longer than twenty minutes I have my dad or a friend drive him.  I do my transcription late at night after he’s in bed so that he doesn’t hear the keyboard clicking.  I do not take calls at night so he doesn’t have to hear my voice. I try not to have guests over because the conversations, laughing and other noises will trigger him.  He has tv to sleep at night because it drowns out the noise.  I don’t wear heels around him.  my-son-has-misophonia-and-autism

What advice would you give other parents who are discovering that their children have issues with sensory processing?
I think firstly, be supportive and not angry.  Don’t take it personally.  It is easier said than done when you are being yelled at for coughing or sniffling but honestly if the child could turn this disorder off they would and it’s very painful for them as well so be supportive.  Try to accommodate but also make sure that you continually keep the conversation open about coping mechanisms.  It’s vital that you both try to compromise and work towards a more peaceful way of living.  The other advice I would give is to communicate with your friends and families so that they can also have an understanding and will try to accommodate as best they can and so you have some support.  Reach out to support groups and share your successes and concerns so that you are not isolated and your child isn’t either.  Also, and this may seem like common sense, monitor diet and sleep routine.  A good diet and lots of rest are very helpful in managing symptoms.  Stress is not our friend!  I would also say don’t lose hope as difficult as things may be.  There will be successes and as we reach out to each other and are open about the condition, we will gain awareness and the medical community will eventually catch up.

Does your son use any coping methods?
Headphones on occasion however this has been a real struggle.  His first thoughts are that others are making the sounds on purpose and that they should simply stop.  We are working on that.  Right now we try breathing techniques and distraction. So if he’s feeling particularly triggered he may politely leave the space or he is to do a word search or work on his Rubik’s cube to distract his mind from the sounds.  Again, he’s young and we really struggle with this because he wants to be around everyone and wants everyone to stop what they are doing and it’s not always possible to do so.  It’s a day to day battle and some days are better than others.
Has your son’s education suffered from the disease?
Yes and no.  Academically he does well.  I’ve educated the school officials as much as possible about misophonia and they are trying to be as accommodating as possible.  He gets quiet space for tests and a peace pass to leave the class briefly when he needs to. Socially it is an issue sometimes as being around other kids can be tough.  He has a select group of friends who don’t trigger him or at least try not to and are understanding of his disorder.   It’s a little more challenging with Declan because he also has Tourette’s with a nasty vocal tic if triggered.  It’s taken us time to develop a social network of kids and even adults who understand. I would say certain subjects have suffered.  His science has suffered because his science teacher doesn’t believe in accommodating.  He feels that people have to get along in the real world so this is helping to make him successful.  We often have “ discussions” about his lack of accommodating and feeling it is more controllable than it is.  I will be glad when he has a different science teacher.

What would it mean to you, if you could have this cured?
Having a cure for misophonia would mean everything to me.  It would mean a happy future for my son.   It would mean we could take our life back and be close again.  It’s not like we aren’t close now but the disorder has been integrated into every moment of our days and nights and it can’t help but cause fatigue and resentment.  I can’t do the fun things with him all the time.  We manage but I would so love to take a holiday with him. Drive long distance in the truck and go to restaurants and just do things that other families do.  People don’t understand when you can’t sit at the same table to eat.  They don’t understand when you can’t take a holiday together.  They don’t understand that you can’t sit in a plane beside your son as much as you love him and want to.  Having a cure for misophonia would mean no more walking on eggshells trying to protect your loved one.  It would mean no more begging neighbors to be quiet.  It would mean no more explaining to restaurant staff to not make a big deal but sit your child at his own table. No more weird looks.  Most of all, my son and I could be best friends again.  It’s not like we aren’t.  I think miso has drawn us closer in other ways because although I’m the main trigger, I’m also the one who understands but it’s far from perfect.  I would love for us to both live life and not have to live around it.