Back in July, I underwent a two-hour audiology assessment. I got the full report in the mail last week, so I thought I’d share the results and how they lend themselves to self-advocacy. From a medical point of view, I have the following:
A mild hearing loss in my right ear
A moderate hearing loss in my left ear
Tinnitus
Auditory processing disorder
I hadn’t been aware of the hearing loss, so I wonder whether it’s really a “loss,” or whether I’ve always heard that way. I also wasn’t aware that the intermittent, high-pitched sound in my head was tinnitus; I’ve experienced that sound, on and off, all my life. Of course, the interesting auditory processing system I carry around was not news to me, although it was fun to have it show up in an audiology report instead of constantly having to convince people to take my word for it.
But that’s the medical point of view. From my internal point of view, the assessment showed me, in new and interesting ways, just how much I rely upon my visual sense to translate sound, and just how much I need to advocate for myself as a visual hearer.
The audiologist gave me several hearing tests, all of which took place in a sound-proof booth. (Heaven!) After I told her that my experience of sound is acute, she adjusted the volume for each test so that the sound would not be aversive. For the first test, in order to get a baseline for what I could actually hear, she simply gave me a series of words to repeat. Then, things got really interesting.
Binaural Interaction
The binaural interaction test measures word recognition in noise. The audiologist played a series of words spoken in the midst of noise—noise that I can only describe as a combination of static and the sound of an airplane flying somewhere in the vicinity of your house. Not fun. In my left ear, I could recognize 80% of the words, which rates somewhere in the middle of Good; in my right ear, I could recognize only 68%, which lies at the border of Poor. (Poor is below 68%.) What’s interesting to me is that I could distinguish sound better out of my left ear, in which I have less hearing, than in my right ear. It’s possible that hearing less allows me to filter out sound a little better. I’m not sure. At any rate, during the assessment, the only way for me to distinguish the words from the noise was to see them as spelled words and hold them in my memory. Each time, my repetition of the word was delayed because I had to work quickly past being overwhelmed, somehow fish the word out of the noise, hold it in my mind, look at it, and read it out loud.
Binaural Integration
The binaural integration test measures how well the subject can hear out of both ears simultaneously. The audiologist played a series of four numbers: two in one ear, and two in the other. I had to repeat the numbers to her. I got very anxious at the prospect of having to decode competing sounds, but I did surprisingly well on this test: 90% in my left ear and 92.5% in my right ear. However, the high scores are deceiving, because the process was not in the least intuitive. I kept my eyes closed, I listened very hard, I memorized what I heard, I visually lined up the images of the numbers in my mind’s eye, and then I spoke them. I did lots and lots of work, which resulted in lots and lots of delay. It’s a good thing I’ve developed lots and lots of patience.
Auditory Closure
The auditory closure test measures how well the subject can hear words spoken very quickly. Yikes. For most of the test, I was guessing. Sometimes, I simply couldn’t hear a thing; I’d just throw up my hands and shake my head. When all was (very quickly!) said and done, I scored 48% in my left ear and 52% in my right ear. On the overview from the audiologist, those numbers don’t even show up in the range of possible results. In the understatement of the year, the report notes that I am “presenting below normal limits in this area of processing.”
This test was very difficult because I couldn’t hear the words clearly enough to form a picture in my mind. I’m unable to hear soft consonant sounds like “p” or “th”; they’re at a frequency that my ears don’t pick up. (Later in the assessment, the audiologist ran a test that showed that the cilia in my left ear, which should be picking up these frequencies, are inactive. I believe she referred to them as “dead.”) Any sound at this frequency drops out at the end of a word. When words come at me slowly, I can usually run through the list of possible meanings in my mind’s eye, but when the words come at me quickly, the sense of the sound fading away is especially acute, and my ability to see the words in my mind breaks down. For instance, for the word stop, I was hearing sto-. For all I knew, the word could have been stop, stock, or stall. When I couldn’t see the word in my mind, I became very frustrated with the process, which probably accounts for why I become overwhelmed when people around me are talking too quickly.
Auditory Patterning
The auditory patterning test measures how well the subject can hear and replicate relative pitch. The audiologist played a series of three sounds, and asked me to tell her whether the pattern was “low-low-high,” “high-high-low,” and so on. I took this test twice. The first time, I used my hand to replicate each sound. If the pattern was “low-low-high,” I moved my hand twice on the same plane before moving it up once. By doing this, I was able to see the sound visually and give the answer. When the test was over, I told the audiologist about the method I’d used, and she said, “Okay. We’re going to do the test again. This time, sit on your hands!”
I tried not to panic. She played the sounds again. This time, I saw the sounds in my mind as colored dots: pink for low and red for high. Apparently, this is a form of synaesthesia, something I don’t remember having experienced before. Since I’ve long had synaesthesia-envy, this was very cool.
Using my visual strategies, I scored 100%, in each ear, on both tests. After all, ordering things into patterns will be the last of my faculties to go.
Recommendations for Self-Advocacy
The audiology report lists recommendations for how to walk through the world and self advocate with my way of hearing:
1. During communication, decrease background noise (such as scraping chairs, running water, fans, and talking).
2. If instructions or directions are given verbally, check in with the person providing them to make sure that I’ve understood what has been said, particularly if no written instructions are available.
3. Request written information to supplement any auditory information. For example, when making an appointment with a doctor, request a card with the date and time.
4. As often as possible, ask that others present information sequentially, especially if more than one person is providing the information. For example, instead of “Before you watch TV, can you walk the dog and take out the trash?” ask others to say, “Can you walk the dog, take out the trash, and then sit down to watch TV?”
5. Ask if I do not understand or if I have missed something. It is important to be as open as possible about communication so that when breakdowns occur, they do not result in anxiety, frustration, and anger.
6. Repeat what I have heard to clarify that I have understood. If I have heard part of the message but not the whole, I need to repeat the information I did hear while asking for clarification of the information I missed. For example, if someone says, “The elephant is sitting on the sofa in the livingroom,” and I heard the part about the elephant, I need to say, “The elephant is sitting where?” If I heard only the part about the sofa in the livingroom, I can say, “What did you say about the sofa in the livingroom?”
I find it a challenge to put these kinds of recommendations into play, but I am making progress. It’s really just a question of inertia. I’ve spent so many years covering up my difficulties and guessing at what people are saying that it’s an adjustment to switch to words like, “I don’t know. Could you clarify?” But it’s been an immense relief to find out that my difficulties are due to differences in the way I hear sound, rather than absent-mindedness, or lack of intelligence, or just plain not caring (all false explanations with which I’ve bludgeoned myself over the years). It’s not a question of attention, intelligence, or love. It’s that I hear sound visually. It’s a simple difference. It’s much easier to ask for help with a difference than with a moral failing. At least, it is for me.
It’s now clear why I’ve been a writer since I first learned to hold a pencil. I’ve spent most of my life struggling to decode sound and render it into words. It’s only in the past year and a half, since I’ve allowed myself to block my hearing, that I’ve realized that my pure visual sense is extremely acute. Because I now don’t need to decode sound constantly and to the exclusion of all else, I can notice what my other senses are doing. There are days in which I can’t even think about putting something into writing. I’m too involved with the pure fascination of the visual world and with rendering it in drawings, paintings, photographs, and other kinds of art.
But I’ll never lose my attachment to the written word. In the world of sound, it’s my anchor.
© 2010 by Rachel Cohen-Rottenberg
Welcome to my world
They normally only do a few of those tests on me because the rest are futile. They can be very stressful too and I always feel like I’m “cheating”.
I loved your comment about it maybe not being a loss. Often I’m quite glad that I have very limited hearing. Is it still a “loss” if you don’t want it back?
Interesting. Reminds me that I haven’t had a hearing test since I got out of the Navy, in 1968. I don’t think it would out of line if I asked the Vet’s Admin. to give me another one now. I’m not aware of any problems, but seeing how inclusive these tests can be, it may be a good idea to have a check-up.
I love this post, especially the self-advocacy tips. Well done as usual, Rachel!
Wouldn’t it be great if we could give away the hearing we don’t want? That way, rather than being a “loss,” it would be a “donation.”
I’m curious if your audiologist had suggested Fast Forward or any other therapy for auditory processing? Or a hearing aid, to “tone down the volume”?
Hi Traveller,
The audiologist didn’t have any suggestions except that I not create total silence, as that would tend to increase auditory sensitivity. (For instance, she said that I shouldn’t use a Peltor headset because it blocks too much sound. I had already stopped using one because it was too tight and heavy on my head and was causing me headaches.) She realized that with autism, my sensory sensitivity is already high, so she was pretty supportive of my using earplugs, not spending time in loud places, and so on. I’ve pretty much found a happy medium with the earplugs, because they block enough sound to keep things manageable but don’t create complete silence.
Are there really hearing aids that allow you to turn the sound down? I’ve often thought of what a great invention that would be!
I have auditory processing and tinnitus and have been recommended for a widex hearing aid and tinnitus retraining therapy. I am waiting for OVR to see if they will help me otherwise I will wait till next year when my husband’s flex spending kicks in and I can get one out of my own pocket (ouch! they are very expensive).
The widex will help with some signal to noise issues that I have. I don’t know if a hearing aid to “turn the sound down” actually exists, but it shouldn’t be too hard to manufacture. I imagine you would take a current hearing device’s algorithm to increase volume and use the inverse.
As far as tinnitus is concerned, there is a lot of research going on because a lot of vets are coming home with tinnitus from their heads getting hammered when an IED goes off. University of Oregon is running a lot of clinical trials involving medicine. If you aren’t interested in medicine, the widex has you listen to a series of tones that match your frequency with the idea that you will train your brain to ignore the noise. While I am waiting for my hearing aid, I use a sound oasis whenever it gets too much. You can also listen to various waterfall, chirping music on youtube to mask the sound. My audiologist said not to go more than 24 hours without 1 hour of listening to something to mask the sound.
Another problem that I have been told by a prominent ENT, who suffers from tinnitus, is that there is a nasty relationship between tinnitus and anxiety. As tinnitus goes up, so does anxiety. As anxiety goes up, so does tinnitus. So apparently, you can whoop yourself up into a frenzy of noise and nerves! So, it’s important to soothe yourself to keep the tinnitus at bey and it’s important to keep the tinnitus down, otherwise, you can get yourself back to reaching for Xanax.
There seems to be two sides of the house in terms of auditory therapy: Main Stream Medicine with many audiologists who recommend hearing aids and Fast Forward and alternative types who recommend Tomatis//balametrics. Tomatis is like the listening program that you were doing with CDs. Balametrics is a lot of balance and exercises involving “crossing the midline”. Apparently when you cross left hand over right side of body and/or feet, it helps rewire the brain in a multitude of areas including both motor and auditory skills. Also, the Interactive Metronome which does more of the crossing the midline but to a beat. This helps with automaticity.
I have a different set of problems than you do… so what I do may not apply to you. For me, these programs cleaned up a lot of vestibular, motor and auditory problems…. I began to hear lyrics in songs that I never heard before. I began to sing on key. My husband didn’t have to repeat himself so much. I was told that they would never clear up everything; but I am going to work hard to get what I can get out of them.
A lot of things have gotten a lot better for me as my poor executive lobes that are working so hard to compensate for what the brain stem should be doing are getting a rest and are able to work on higher order functionality as my basic senses come on line.
A thought on compensating with motor skills or visually for hearing defects. I have also been doing vision therapy and had been compensating by verbalizing as I did exercises. My optometrist told me to stop verbalizing during the therapy so that the eyes would begin to do the visual processing that they needed to do and that the visual processing would be more automatic without relying on other senses. I actually had to listen to some Bach in order to stop the talk inside my head. Once I did so, I improved a lot visually. I will be doing more work specifically on auditory skills after I finish the interactive metronome. I imagine I will have to put on some music and clear out the verbal so that my hearing will improve.
I also cleared my mind during Tomatis/Balametrics and IM and became “one” with the exercise. No thought, just get in the zone. More things become automatic faster… leaving my poor executive lobes free. Honestly, if they drank champagne, I’d be toasting my executive lobes. I have joking about kicking my brain stem to get off its lazy duff and start pulling its load.
I’m not panning compensatory strategies; I do my share of compensation. But for me, it works to get more functions more automatic so I can get on with life. Each one on the Autistic Spectrum is different so your mileage may vary. But it is good to share experiences.
I do not think a hearing aid would be helpful for you Rachel. I have less hearing than most people, and wear a hearing aid, but the only way it can turn sound “off” is to take it out. I’m not sure a hearing aid would be positive for someone who has AS or Autism because it picks up noise all around you, and it is louder especially when more than 1 person is talking. Some of the tests you had done sounded very familiar to me or variations on them.
I am a trained musician with perfect pitch and hyper auditory sensitivity – I hear things that people normally do not hear or at magnitudes that do not normally bother people, and sometimes I hear non-tonal sounds tonally. But I still cannot ‘hear’ or rather I hear but cannot quickly grasp verbal communication in a ‘live’ situation as quickly as I can identify the sound of your voice, the timbre, the tones, the rhythm and the speed. I think my problem is about making sense of semantic meanings being blurted out verbally without any visual illustrations. I attribute my ‘slow’ hearing of verbal communication to the fact that I am a visual thinker, despite being told repeatedly that I have a way with words. I also suffer from tinnitus – and I am not sure whether this is part of my autoimmune condition or something else. Anyhow, the ears work fine, for me, but the brain is wired to the visual side of things.
Writing is the one good way for me to communicate too, Rachel! I need to ‘see’ the words in my head and on the page / screen and somehow form patterns and visual links to make sense of things.
i like the suggestion about repeating what was heard and asking to clarify the rest. i’ve learned that a lot of people don’t like “what?” so stopped doing that, but hadn’t found anything to replace it with. the only exception is when i’m in a work situation and can ask employers if they don’t mind if i write everything down… not practical in most other places.
i’ve had tinnitus too for years. i have noticed as traveller said that it goes up when anxiety does, so until i became more aware of AS issues, i always assumed it was ptsd associated. i’ve noticed a lot of people on the spectrum have it, and i wonder what causes it.
am highly attached to the written word too…
i sometimes think i love it in a way that’s almost personal. it’s an anchor. that’s all i know… 
I wish I had a sound proof booth in my home. On the days where dog barks, lawn mowers, children playing gets the better of my husband I could pop him a little relaxing room with no sound. The poor thing just shivers in neurological overload hell some days.
My 10yo daughter sees words spelled out in her mind everytime she or someone else speaks. I read on your blog that you too have this special gift. Any ideas where I could go for more information? Her Dr’s don’t seem to know anything about this. I really need some guidance in this area. I find your blog very interesting. Thanks for sharing. Debbie
Hi Debbie,
I don’t know of anyone else who writes about this subject; I see it occasionally on other blogs, and I have friends who experience the word pictures as I do, but I haven’t seen any articles about it. Feel free to email me and we can talk more about your concerns.