Tinnitus in Autistic Child

Hello, has anyone experienced tinnitus with an autistic child? My 13-year-old son has sounds in his ear that manifest when he tries to get to sleep. He has always had hypersensitive hearing, and can hear ultrasonic sounds such as a cat deterrent.

The tinnitus started about 2 weeks ago. It stops him from getting to sleep. He says the sound is really loud. He desperately tries to get to sleep, often has a meltdown due to his autism, is awake all night and all the next day. Eventually he just collapses, then might sleep between 4 hours to 18 hours.

Because of his autism, it is almost impossible to manage what therapies to use. He refuses to use white noise apps (I have tried White Noise HD, because there is a drone sound that actually helps me with my hypersensitive hearing at night), and refuses to try other sounds such as music, meditation, etc. He won't communicate any problems or feelings he is having, and refuses attempts to comfort him. All we can do is brace ourselves every night and try to manage the meltdowns.

 

Why are you letting an autistic child with severe tinnitus listen to ultrasonic sounds??
Is this a sort of cruel experiment? This borders on child abuse.
Lord have Mercy.

P.S. needless to say, throw that ultrasonic cat deterrent out.

 

It sounds like some form of recruitment or loudness hyperacusis.

 

I'm sorry this is happening to your son.

What does he use to self soothe?

Could body based therapies such as massage help him?

 

I didn't say the cat deterrent disturbed him, I said he could hear it. He also doesn't like cats in the garden. He prefers birds. Sometimes he asks for the deterrent to be turned off, and we do that.

Thanks for assuming you know everything about my household, though.

 

Thanks for

Thanks for the reply. His go-to to help him calm down is to watch youtube videos. Which, I know, isn't great for trying to get to sleep. We've tried ways to reduce his video watching at night, but the resulting meltdowns are not pretty.

I will look into massages, but he hates being touched...

 

I don't need to know about your household.
I'm telling you high frequency sounds are damaging to the human hearing. Don't listen to a little boy about a cat deterrent sound.
Cats chase birds, dogs like birds, child likes birds, child hates cat, dog chase cats = get dog.

 

Have you ever tried light therapy ? It might work as a distraction. If you google snoezelen therapy it gives a few examples and can be effective for people with autism.
Really hope you find something to help him.

 

Thanks simb999, I'll look into that.

The past two nights haven't been too bad. He's managed to get to sleep by about 3 am, without any meltdowns. Still using videos as a distraction.

 

Hi DuncanT,

You got your hands full... big hug... sounds like a tough situation.

Sounds like you need a sympathetic specialist and coming short of that, and with that, trial and hour and holistic instincts. What does that mean... it means follow common sense if it's apparent, I know it's rough and hard to tell what to do.

I personally wouldn't try to help your child's tinnitus with more noise... I wouldn't do that myself. Autism is so varied and broad... every person is different. Some Autistic folks respond fantastically to music... I would turn to that before white noise...

If the little fellow enjoys videos and can slowly chill at night to that... do it. Why not. Every parent would prefer their kid to read and blah blah... but it's the modern world... I like to sleep with back round TV going... it helps relax me.

My heart goes out to and your child... it must be so difficult for him to communicate his frustration...
Take it slow... and keep us posted...

This forum is your resource... be patient you might get some helpful tips.
Good news is also welcome if you have any to share.

 

I have autism and I respond fantastically to music.

 

That's great... so glad you have music to help.

Stay well Lurius,
Daniel

 

autism got to do with Tinnitus..the kid IS human. HE will have it. Help him cope..distraction.

 

as long as the music is low! playing music LOUD is one of the main causes. For me, the inner ear hairs are bent. I play my workout music LOW.

 

At the moment he is awake for nearly 24 hours at a stretch, and sleeping about 5 hours.
He is refusing every kind of therapy or relaxation method we offer.
He's going out of his mind. He is trying to pull his ear off and tear his hair out.
He is asking us to kill him, or to give him a gun. There's no calming him, he's angry and suffering all the time.

GP couldn't offer much help. Referred us to the ear specialist. Ear specialists are not seeing anyone at the moment because of COVID-19.

I don't know what to do. We're all going mad with tiredness and stress. If he doesn't sleep, no-one sleeps, because of his meltdowns.

Thank you for listening. I'm not expecting anything, I just need to vent.

 

The cycle continues. He woke up at midnight yesterday and was awake until 9pm (21 hours later). Managed through the day by taking him out the park a few times. He woke up at 3 am because of the tinnitus and alternated between sobbing and having meltdowns. He is crying "when will it end?"
He refuses to come outside with me for a walk, even though this is the best way to bring him some relief.
I know I should manage expectations but I cannot yet bring myself to tell him this could be long term or permanent.

Managed to another bis of information from him. His jaw sometimes "clunks", so it sounds like he has hypermobility. Maybe this is putting pressure on his ear?

 

Try playing some masking sounds for him, even if he refuses. This sound works wonders for me

Ultra High Pitch Tinnitus Therapy - Relief for...

 

Any idea how loud the cat deterrent noises are? I get it's a frequency that we generally can't hear, but I wonder if it's so loud that it actually does damage. I've heard the sound from a similar device and it was LOUD.

 

Actually I don't think we've had the cat deterrent on at all this year. The wife put up extra fencing to keep the cats out.

The only other sound he says bother him (that we can't hear) is some kind of background sound from the computer speakers, or other sounds from the computer (fan? hard drive?). These didn't bother him before, but now he's hypersensitive to it.

We have 3 different desktop computers with different speaker arrangements, and he can't tolerate any of them now. Finally got him settled using my all-in-one computer which has a really quiet fan and built-in speakers.
Watching videos with the sound turned up is the only relief he will accept. Still will not let me try white noise, still refusing to go out for a walk.
Looks like the daily routine is letting him scream and demolish the house until he calms down, then picking up the pieces afterwards. We had to get my daughter out of the house, she is terrified. I have no idea how we are going to handle things when I return to work next week.

On the plus side, he was able to communicate a symptom to me. He says there is a problem with his ear that isn't the usual ringing sound. He describes it as a "shaking" sensation. I can only guess this is ear spasms. In which case maybe the GP can prescribe a muscle relaxant.

Again, thank-you for reading.

 

He's been awake for 26 hours now. Screaming and screaming. The house is a wreck.

Asked the GP again for an ENT referral and again we got a letter saying it is "routine", that is, no appointments are being made due to COVID-19.

We got so desperate today we took him to A&E. Poor kid patiently waited 4 hours. Eventually a doctor said "there's currently no pathway for tinnitus". My son had a full meltdown there. Complete dead end. No medication to help him sleep or anything.

He's begging for his life to end. I don't know what to do.

 

Okay, we FORCED him to listed to some white noise. He complained for 5 minutes, then fell asleep.

 

Sorry, I need to unload again. We are spiralling into madness. My son has degenerated to the point that he can barely communicate except through loud moans and shouts and spends his waking hours lying down on the floor or in bed. Seems to be worse when he first wakes up. He is refusing masking sounds again. Codeine helped calm him for a few days, but we can't keep giving him that.

He sometimes complains that an ear has "stopped working" which I take to mean deafness, and sometimes auditory hallucinations such as beeping sounds. He got angry with a noise from pair of speakers, even though I had unplugged them from the mains. Every day he says "I want my life to end."

He has been taking 10mg of circadin (melatonin) for a few years now to help with pre-existing sleep problems. It worked very well to begin with, but became less effective, and obviously now it has no effect since the tinnitus is so overwhelming.
But is there any chance that the melatonin is causing or exacerbating the tinnitus?

 

I'm so sorry your son is going through this. I honestly don't have any advice, just that I hope he finds relief.

 

You have my fullest sympathy, it sounds like hell for your family at the moment. Off the top of my head reading what you've put down here I can really only suggest one additional thing that might be worth considering:

About a year ago when my tinnitus had gotten really quite bad again I started to change my diet. I began eating shed loads of spinach, drinking fresh ginger teas, and also drinking fresh lemon water. These foods are quite often discussed in the tinnitus community and eating them did seem to help me, but I can't be sure whether or not the effect was placebo. Having said that, have you considered trying to "placebo-ise" your son with some kind of similar diet regimen? It may or may not work - it may not work long term, but it might buy you a bit of time short-term just to try and get things back on track.

Let us know how you get on.

 

Wow - what a difficult situation.

Here's a few thoughts in case they're helpful.

1) try getting a fan to whirl by his bed, providing a gentle whooshing noise. It helped me when I first got tinnitus.

2) You mentioned that "his jaw sometimes 'clunks'." There is a relationship between some jaw issues and tinnitus, and dentists are sometimes able to help, for example, with a splint. Might be worth checking out.

3) I would find a neurotologist with a tinnitus specialty.

It sounds like there are so many things going on at the same time, that finding relief is going to involve someone with a lot of experience who can look at this in 3 dimensions. The sleep problem is obviously exacerbating everything else, and a good neurotologist should be able to help with that as well as other related issues.

Good luck!

 

I hope things are better for you lately.

 

I'm so sorry you and your son are going through this. My son is not autistic, but has ADD/ADHD. Processed and fast foods really wind him up. What about a low-sugar, no caffeine diet high in fruits and veggies? It might help him calm down, it helps my kiddo. **Have you tried the supplement CALM? It has Magnesium and I take it daily in my water. It's really calming and does make you slightly sleepy. It was a game changer for me during quarantine.**

I can't imagine explaining to a teenager with autism what tinnitus is and trying to help him cope. Hopefully, with time his will improve. Praying for relief soon.

twa

 

Prevalence of Decreased Sound Tolerance (Hyperacusis) in Individuals with Autism Spectrum Disorder: A Meta-analysis

Objective: Hyperacusis, defined as decreased tolerance to sound at levels that would not trouble most individuals, is frequently observed in individuals with autism spectrum disorder (ASD). Despite the functional impairment attributable to hyperacusis, little is known about its prevalence or natural history in the ASD population. The objective of this study was to conduct a systematic review and meta-analysis estimating the current and lifetime prevalence of hyperacusis in children, adolescents, and adults with ASD. By precisely estimating the burden of hyperacusis in the ASD population, the current study aims to enhance recognition of this particular symptom of ASD and highlight the need for additional research into the causes, prevention, and treatment of hyperacusis in persons on the spectrum.

Design: We searched PubMed and ProQuest to identify peer-reviewed articles published in English after January 1993. We additionally performed targeted searches of Google Scholar and the gray literature, including studies published through May 2020. Eligible studies included at least 20 individuals with diagnosed ASD of any age and reported data from which the proportion of ASD individuals with current and/or lifetime hyperacusis could be derived. In order to account for multiple prevalence estimates derived from the same samples, we utilized three-level Bayesian random-effects meta-analyses to estimate the current and lifetime prevalence of hyperacusis. Bayesian meta-regression was used to assess potential moderators of current hyperacusis prevalence. In order to reduce heterogeneity due to varying definitions of hyperacusis, we performed a sensitivity analysis on the subset of studies that ascertained hyperacusis status using the Autism Diagnostic Interview-Revised, a structured parent interview.

Results: A total of 7783 nonduplicate articles were screened, of which 67 were included in the review and synthesis. Hyperacusis status was ascertained in multiple ways across studies, with HYPERACUSIS META-ANALYSIS 4 60 articles employing interviews or questionnaires and 7 using behavioral observations or objective measures. The mean (range) age of samples in the included studies was 7.88 (1.00- 34.89) years. The meta-analysis of interview/questionnaire measures (k(3) = 103, nASD=13093) estimated the current and lifetime prevalence of hyperacusis in ASD to be 41.42% (95% CrI [37.23, 45.84]) and 60.58% [50.37, 69.76], respectively. A sensitivity analysis restricted to prevalence estimates derived from the ADI-R (k(3) = 25, nASD = 5028) produced similar values. The estimate of current hyperacusis prevalence using objective/observational measures (k(3)= 8, nASD = 488) was 27.30% [14.92, 46.31]. Heterogeneity in the full sample of interview/questionnaire measures was substantial but not significantly explained by any tested moderator. However, prevalence increased sharply with increasing age in studies using the ADIR (BF10 = 93.10, R2 Het = 0.692).

Conclusions and Relevance: In this meta-analysis, we found a high prevalence of current and lifetime hyperacusis in individuals with ASD, with a majority of individuals on the autism spectrum experiencing hyperacusis at some point in their lives. The high prevalence of hyperacusis in individuals with ASD across the lifespan highlights the need for further research on sound tolerance in this population and the development of services and/or interventions to reduce the burden of this common symptom.