parent of 14-yo boy with misophonia

[Guest guest]

I have been reading and learning more about misophonia through all of you for several months, but I wanted to take time to introduce my son before I start posting my own questions. I didn't mean for it to be SO long, but I am hoping that people wondering about misophonia may see the similarities, understand and be more understanding.

My son has misophonia with level 10 self-injurious responses.

-- In Spring of 7th grade, at 13 years old, he started hitting his head on walls, lockers, and furniture at school after complaining of kids making sounds (beat boxing, hissing) in class. He would be released to hallway to cool/calm down.

-- Teachers and his principal started letting him listen to an mp3 player for a calming music therapy.

-- 8th grade continued with use of mp3 player, but head banging in class continues to concerning levels. He constantly complained of "hissing" and "chewing" "noises" at school with all staff members saying that no one was making sounds. He began listening to music 100% of school time. He prefers movie soundtrack or orchestra/symphonic music, for those wondering.

-- In January of 8th grade, at 14 years old, he started tapping his head on wall, furniture, and his knees at home.

-- In February of 8th grade he started having intense weekly incidents or attacks at school that cause concern for his safety. During these attacks he seems detached, inconsolable and unreachable or in a trance. At times whimpering like an animal. (panic or anxiety attacks?) Recovery time 10-60 minutes.

-- In April of 8th grade year was isolated in a quiet classroom with an aide doing independent work for remainder of school year.

-- At the end of 8th grade, 3 weeks before the 20/20 episode in May 2012, we found the page 9 description for misophonia. We felt like we were reading about our own life experiences. (http://www.hyperacusis.org/page9.html)

-- We consider his self-harm at three levels: tapping, hitting and banging. Tapping is a gentle tap in a table or chair, where banging is concern for concussion. Although his neurologist says that a person can't really give themselves a concussion…

Medical professionals:

-- He saw psychiatrist from 3rd-8th grade for "atypical" ADHD and medicine management.

-- He saw psychologist for most of 8th grade, but he couldn't "think of anything else to do" so we stopped going.

-- He switched to neurologist in spring of 8th grade year for medication review and management.

-- He began seeing a new therapist in spring of 8th grade recommended by Audiologist from provider list. She uses hypnosis and distraction activities to "suggest" ways to handle the situations that noise cause. He tells her that noises started to really bother him when he was 11.

-- He sees an audiologist from THE provider list for evaluation and she confirmed misophonia recommending white sound generators to cope. Most of his evaluation had to take place in the sound booth because of noise and interruptions in the patient room. Luckily we live in a city with a big research center. He has tried white noise masking on occasion.

He has typical misophonia behavior that others here have questioned and discussed:

-- He spends most of his time in his room and eats most meals by himself.

-- Agoraphobia is becoming a concern. His hyper-vigilance when we leave the house can be limiting.

-- He controls his auditory and visual "diet" by spending most of his time on game systems or computer (how much of this is just typical teenage boy?) To go out as a family we let him "game" the entire time and use noise reduction earbuds.

-- He copes by masking with mp3 player 100% outside of the house and van, 20% in the house but only around his sister. He and I do enjoy audiobooks in the van.

-- He has auditory triggers of certain sounds, but does not trigger himself. He has four major sounds that he attributes to people that affect him: "hissing", "clicking", "smacking", "chomping" with hissing the mildest and chomping the worst. You do not want to be a "chomper" around him.

-- He has visual triggers. His sister walks down the hall and he may tap his head but most often heads to his room. Also, kids who have bullied him at school, which includes a lot of kids, cause he to hit his head on the desks at school making the classroom setting almost impossible for him and others.

-- For medications, we found that stimulants "increased" the noise. After several combinations this year, he is currently taking Luvox and Strattera.

-- His official medical diagnosis is ADHD, OCD, anxiety but may expanded to include PDD? or Asperger's? He has some "little professor" tendencies and obsessions.

-- His educational IEP lists Autism (language impaired) as the diagnosis. He has had an IEP since he was 3-years old. I wonder sometimes that his social language skills are behind because he can't stand to talk to people or the sounds they make.

-- He is a bright child with a B-average even after spending only part time in class the last two years. I wonder what it could be if he didn't have his worries.

I would also like to say to people in doubt of whether it is misophonia don't say:

-- "Don't worry about the noises."

-- "Ignore the noises."

-- "Get over it."

-- "I don't hear anything."

But stop and really listen to your kid, your friend, your spouse…otherwise they could turn the rage onto themselves and self-harm.

I'll never forget the psychiatrist telling me, "Well, you just tell him to stop hitting his head." This response lead to the switch back to the neurologist and review of medications.

Thanks to all in this group for helping me to understand.

ginny