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PJ007

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  Our son is doing well with his therapy for hyperacusis caused by ear infections and conductive hearing loss.

  Is there therapy for someone with hyperacusis caused by autism?   What is the therapy?   Do sound generators work?

  I am working on a presentation for our local Special Needs Parent group for next Fall and am starting to research options for fellow parents.

  Thank you.

PJ
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aQuieterBreeze

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Reply with quote  #2 
Hi PJ,

I am glad to hear your son is doing well, with his therapy for treating hyperacusis - that is wonderful news.
Though i know you mentioned some things about some of what you were trying in regards to therapy for him - in other posts, could you please give us an idea of the treatment(s) / therapy he is using?
Thanks so much.
It is truly great to hear he is improving! (At least by what you mention it sounds like he is - and that's great news!)

About your question about hyperacusis and autism - others may be able to be of help to you in regard to that. Wishing you the best of  everything with your project and presentation.
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PJ007

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  Our son's therapy for hyperacusis includes:

1. Sound generators with ocean sounds for about 5 to 6 hours per day currently.  We are working to increase his listening each day by 5 minutes. 
The goal is all day.   He listens to the sound generators along with fun computer games on Disney, Nick Jr and also music he likes.   The sound generators help to strengthen the muscles and nerves in his ears.

2. He listens to a relaxation tape from The Child Anxiety Network called "I Can Relax" by Dr. Donna Pincus every night before he goes to bed.  The CD gives him ways to relax muscles and lower his stress levels from noise.  This was recommended by his therapist who is helping our son with the fear of noise.  The therapist is a psychologist that specializes in kids. 

3. He has a tape of ten to twelve sounds he doesn't like.  I was able to get the sounds off youtube. ( Baby’s laughter, different laughs, baby’s crying, phone ringing, doorbells, helicopter,  snowblower, plane flying overhead, game (crowd) noise, clapping hands, dogs barking, train,  and train whistle)
 We will be doing about ten at a time ongoing.   He listens to the sounds for a very short amount of time with breaks while classical music plays on another CD/IPOD.   We are selecting sounds from near our home and his school(therapy) first.

4. He is starting Feeding Therapy with a Speech Therapist to help him eat crunchy food in a step by step approach.  Our pediatrician wrote a script so it would be covered by insurance.

5. He is homeschooled by his Mom so he can keep up with school work while getting therapy.  The hope is that he can return to school in two to three years but if homeschooling is needed we are grateful we can.  School materials and planning match the school's along with Brainpop.com and Kumon.  There are so many resources to help kids learn.

6. He sees a Speech Therapist and OT at school to help him with learning.  He was deaf for his first two years.  The OT helps him mainly with fine motor from ADHD.  He was in special needs before leaving school so the therapy help continues for him. :-)

7. He takes Melatonin to help him sleep.  The dosage should be checked with a person's physician.

8. I keep a Sound Diary.  I write down every day how long he listened to the Sound Generators and by month I write down observations of his dealing with sound.

We are seeing improvements and he just started sound therapy at the end of Oct.  We have added other therapies one at a time.  Some of the improvements include:  wearing clothes he couldn't wear before,  using a pillow and pillow case,  able to handle being in public places better,   focus and attention improved,  he communicates with us more,  and knows we know what he has been through.  :-)  We learned he will do better with low frequency sounds and then high frequency sounds will come later.
I am working with clinical associations and publications to build the awareness of hyperacusis in children since we think that many kids don't know how to explain their symptoms. 

If a patient is in the Midwest....I highly recommend The University of Iowa Audiology Department. 
PJ


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aQuieterBreeze

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Reply with quote  #4 
Thanks  PJ,

Having  a better understanding of his challenges must help a lot.

I noticed you started a new thread, with the information you mentioned above - and I'm curious - would you prefer if people have comments or questions about your post above (except as they may relate in any ways to your original subject of hyperacusis and autism, or the presentation you are putting together  ) -- that they post those in the newer thread you started?
(I mention that also in hopes that people reading this one - will also notice that one)

Thanks for taking the time and effort to explain things in the way you did.
That's very kind of you....and may possibly be very helpful to others.
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PJ007

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 I don't mind what order or where someone responds to my posts.  :-)

I copied this with a different title in hopes that it might help a parent find it faster if there child has hyperacusis without autism.

Thanks.  PJ
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cbBen

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Reply with quote  #6 
From Dan's "Success Story" (see network home page):

"One night on the TV show 20/20 they had a segment about autistic children and Auditory Integration Therapy.  I went to Cincinnati for this therapy because AIT improved their tolerance to sound.  When I was there they gave me a hearing test to identify my most troublesome frequencies (which was almost everything).  Then you listen to two 30 minute sessions of music with those troublesome frequencies removed.  The problem is the music coming through the headphones often exceeds 85 decibels.  Although I didn't think my ears could get worse, they did."

A I understand it, Dan does not have autism and the above therapy made him worse, presumably due to the volume of sound involved.  

If your son has autism, however, maybe this treatment would help him.  But if you investigate it, I would certainly bring up the volume of sound involved and get a clear understanding of what risk it may pose.  Perhaps talk to some folks for whom it did not work as well as those for whom it did.  

I personally know nothing of AIT beyond that it is specifically indicated for autistic children, per Dan's account above.

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PJ007

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Reply with quote  #7 
Thank you for your post.  I am asking for parents in the Special Needs group I belong to that have children with autism.  My son's hyperacusis was from ear infections and conductive hearing loss.  He had no receptive language at age 2- speech therapy helped with that part.  

I do talks about resources for local parents and want to make sure that I am not leading people to things that won't work for their child but want to make sure I share what could help.

I very much appreciate your help.
PJ
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PJ007

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 I got my answer from a therapist who works with kids with autism.   The listening programs for kids with autism are auditory integration therapy and earobics.   The therapy our son is getting for hyperacusis caused by ear infections and conductive hearing loss isn't used with children with autism who have sensitive hearing/hyperacusis.   Hopefully this information will help others.
PJ
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rjmckiernan

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Reply with quote  #9 
Thank-you, rj for your post!! It has been the closest to our situation that I've found yet...I could hardly believe my eyes. My daughter, 16, is Autistic and homebound due to her collapsed tolerance to sound. Every year as a child, she had ongoing ear infections, and courses of antibiotics which caused her Hyperacusis. We live in Michigan.  I wonder, did you travel out of state for your son's evaluation and program? My husband could never take time off from work, as he was laid off for a long time, and currently back on the job. I wouldn't be able to manage traveling without him. Her sensitivities are so acute that we had to move from our previous home of 12 years which is near an expressway. She is pretty isolated, except when we take her to quiet places, or around people with low voices, etc...I'm wondering if we had her LDL(?) updated to assess her tolerances, and then we could start with a basic program of say, a few sounds and exposure, even for 30 seconds or so and build up? I know this would have to be done with great caution. It's odd tho, that she does listen to pc music, and tapes of her choosing. And she DOES scream! She doesn't want us to talk, but we are asked "how can she stand her own screaming?"  My concern for her is for the future, and who will live with her when her father and I are gone. I completely trust The Lord, but know there must be something I can do.
Many Thanks & Blessings to all, Joan-Katie's Mom 
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PJ007

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Reply with quote  #10 

Dear Joan-

Nice to hear you.  I am on this board to try and help other parents with their children as well as understand my child's need and symptoms from the kind adults on this site.  I do volunteer work where I live to I share resources to help all kids learn with a focus on special needs.  My previous jobs helped to prepare me for my volunteer work.  :-)

Has your daughter been diagnosed with autism by a Behavorial and Developmental Pediatrician?    Autism was  ruled out by Dr. Cupoli at Illinois Masonic in Chicago- he is the best I know for deciding whether or not a child really has autism.  I think The University of Michigan's Mott Children's Hosptial would have an expert like Illinois Masonic. We live in Illinois now and went to The University of Iowa Audiology for help.  Everyone has a different opinion and that's what is good about these boards.  I am originally from Michigan and the best place I know of is The University of Michigan Medical Center Audiology/Ear Nose and Throat areas.   I was a medical sales rep years ago in Michigan and went to many of the hospital in metro detroit area.

The therapy for hyperacusis for a child with autism is different than therapy for a child with a history of ear infections and conductive hearing loss.

For hyperacusis with autism sometimes Auditory Integration Therapy helps.  It is expensive.  I don't have experience with this.  Another thing for a child with autism and noise problems would be to work with an occupational therapist where they could pair unpleasant sounds with pleasant things.

Hyperacusis from ear infections like my son's use the sound therapy that they talk about on this website works in 90% of cases.

It is really important to rule out or rule in autism and a school's diagnosis doesn't count because they aren't trained to diagnose it. 

There are physical things that can cause hyperacusis too.  Our son had a CT scan and a Threshold ABR.   I am not sure if the test vary by patient but a U of M Audiology could help you with that.

As far as the medical bills, you could call U of M and talk to them about resources and payment plans. 

Please let me know your thoughts and if I can help or research anything for you.  I have a great deal of resources and a passion for helping children because I have been there as a parent.  It is not easy.

PJ



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LynnMcLaren

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Reply with quote  #11 
Wrote a post lost the board should of copied it but will try again.. ((( Smiles )))

My children both have autism and they have never done AIT therapy and one had hypo hearing and the other hyper. AIT is too loud and as we don't know all the existing vunerabiltes of why some people come down with hyperacusis and some people don't the pre existing vunerabilty besides maybe lyme disease etc..
and plus also there are many medical conditions and many ways one has come down with hyperacusis did not want to take the risk as lots of children with autism already have a vunerabilty sound disorder of many degress...
and a loud noise incident in ones ears could push some over the edge in the vunerabilty issue..
I was going to tell you what happened to me why I believe this is true but lost my post so will have to do it later on.. Sorry about that...
Everyone have a nice weekend will be back and there hypo hyper hearing improved..     

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Lynn
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