Living With (Central) Auditory Processing Disorder

CAPD CARTOON!
Thai Food

Andrea has written several posts about CAPD
– see the listing at the bottom of this page.)

I am walking across campus when someone stops me. While I am standing there desperately trying to figure out who this out-of-place person is, they ask me, “Are you going to the four-meter spa?”

I blink with confusion, and then realize that I am scrambling these sounds, so ask for a repeat, but it makes no more sense. Apparently this is an important question, so I ask for a re-phrase, and finally it all clicks: this is Elverta and she is asking me, “Are you going to tutor for me this fall?” This kind of auditory miscomprehension is a real problem; I end up answering the wrong questions, and sometimes the person and I do not realize that we are engaged in a dialog about entirely different subjects.

Sometimes although the other person knows what they mean, what I think they mean may not be what they are thinking of. Although I state that I understand the problem, neither of us is aware that we are “not on the same wavelength”. Then the problem continues, and the other person views this confusion as further proof of my inability to learn and perform well rather than as a mutual misunderstanding of the situation! The same scenario has happened a number of times, and been a source of problems with various managers and bosses.

Sometimes it’s the decoding where I bog down, where a conversation progresses normally, but has bad phonemic sectors, “Blah-blah-blah-blah mumble blah-blah-blah.” If I ask them to repeat, it just comes out “Blah-blah-blah-blah mumble blah-blah-blah,” again. It’s like have poor cell phone reception, where the signal gets static or drops out. The subtitles in my head, that mental transcript I mentally read to decode the meaning behind the words I have just heard, looks just fine during the blah-blah-blah-blah part, and then suddenly at the “mumble” section the letters go bad, like the alphanumeric characters on the ophthalmologist’s chart where the line is too small to read clearly. Foreign languages are especially hard to understand, especially French for not being spelled phonetically. I hate drive-through lanes, or pages and announcements at airports because I can’t understand half of what they’re saying.

I’ve had my hearing tested more than once, due to various difficulties with speech. No matter where I have lived, people have always asked me about my “accent” (actually a corrected speech impediment). However, my ears work excellently well; I hear things most people don’t, like computer hard drives and motors that are off-pitch. I have developed hyperacusis and tinnitus, and the latter only worsen my comprehension problems.

Over the years, my family, teachers, graduate school advisor, and employers have complained at me for not understanding what was going on, for forgetting what they told me, for taking things too literally, or for ignoring them. I do what I can in class and meeting situations: I sit up front, do the readings beforehand, and watch what the speaker is saying. But many times I am caught between an air conditioner fan or steam-heat radiators, flickering-buzzing lights, and a whining projector, and thus can barely understand the speaker despite the fact that I am just a few feet away. Sometimes I ask them to speak up, but it really isn’t their volume – it is me having difficulty discriminating between the voice and the background noises, plus my mental decoding of his discussion into these new words, plus my double-time processing of trying figure out what is being said in words and what it means in content. Often I cannot understand people when more than one person is speaking. I’ve tried recording lectures, but generally it’s not any clearer the second time around.

I had never realized just how much of television or movie dialog that I misunderstood until I watched television close-captioned (subtitled in English) with my hard of hearing husband. It wasn’t until later when I tried watching programs that weren’t captioned, that I realised the lapses in dialog comprehension and the strain on my attention the effort requires. I have especial difficulty on the phone or when I am not watching someone speak. When writing for newspapers and magazines I hated doing interviews, and have never been fond of carrying on extended telephone conversations. I really hate checking voice-mail, especially when I have to listen to the same rambling message three or four times just for the fast, slurred phone number at the end! Text messages work much better for me.

Verbal directions are hard to keep straight. A few summers ago I worked at a research farm, and the field boss Terry explained to me how to drive the tractor. At the time I had no trouble understanding what he was talking about, but the next day I was frustrated to find that I was unable to remember all the details and steps of what he had told me, and he was annoyed that a college student should have difficulty remembering something so simple!

Being able to identify or prevent these kinds of occurrences are problematic in school situations, and to my future employment. I needed some way of being able to explain to people how I can have such perfect hearing yet not understand what they’re saying, and that I am not being rude, uncaring, lazy or stupid. I needed better ways of dealing with problems than just “trying harder”. A hearing exam simply showed that my hearing is perfect; Auditory Processing Disorder (sometimes known as CAPD for Central Auditory Processing Disorder) is not readily diagnosable with an ordinary screening hearing exam. It requires specific testing. Once I found someone who specialised in this, the results were illuminating, and having this information has proven to be beneficial for both me and my employers.

This following is the main portion of a letter for instructors and employers describing how Auditory Processing Disorder affects me, and how I cope with it. APD is not a well-known problem, so I post this here for more people to better understand it.

Auditory Processing Disorder is an invisible disability, a developmental condition that interferes with the processing of speech. Although my hearing is perfect, I yet have intermittent problems with perceiving and decoding what people are saying. It’s like having poor cell phone reception, where the signal gets static or drops out. My difficulties have worsened with the tinnitus (a subjective, intermittent whine in my ears) that adds more “noise in the system”.

Testing by a licensed audiologist has revealed that under absolutely quiet conditions my comprehension (i.e., processing of spoken words) is 80% left ear and 86% right ear. Under noisy conditions (e.g. machinery and/or multiple voices), my comprehension is reduced to just 68% left ear and 52% right ear.

HOW IT AFFECTS ME

You can imagine how difficult it might be trying to keep up with conversations or to understand lectures when I am only comprehending half of what is being said. What I have to do is to rely on context to puzzle out what people are saying. I must spend extra mental effort to unscramble new terms and concepts, in addition to my double-time processing of trying to remember what has meanwhile been said while I was busy figuring out the word. Doing all this decoding takes up working memory. Because I have to attend to what is being said in words, I have less attention for figuring out what is meant in conceptual content. I often have to ask questions or post comments during lectures and meetings to verify what I think has been said.

My working and short-term memory are used to process the conversation, rather than to remember what I’ve heard. The result of this is that for many classes I leave the room without any clear idea of what the whole lecture was about, because I’ve not had much extra short-term memory left for storage. I have to read my notes afterwards to do the learning part from the lecture.

Verbal directions can be difficult. I have trouble understanding, recalling, and keeping straight a series of commands. For example, directions on how to get somewhere, the steps involved in operating machinery, or even the steps involved doing calculations can be quite difficult. Additionally, numbers like five and nine, or fifteen and fifty sound very similar.

Discriminating between voices and background noises is difficult. Situations with multiple people speaking are especially challenging because all the conversations and the background noise keep weaving together. This includes not just restaurants and conferences, but also conversations in offices, hallways, and in classes where people break into “small-group discussions”.

Most environments can be more mechanically noisy for me than others perceive them to be, because I can hear a greater range of high-frequency noises than many people. Window air-conditioning units, steam heat radiators, LCD projector fans, computer hard drives and fluorescent lights all create rooms that are substantially noisy for me. Hyperacusis (a medical condition causing increased sensitivity to sound) makes the high-frequency noises subjectively even louder.

STRATEGIES THAT HELP

I have developed a variety of compensatory strategies, as I must deal with this disorder all through the day. Outlined below are a few strategies that would be helpful for me and for us when communicating. However, these are only partially successful, and my abilities to compensate for the APD deteriorate when I am tired or sick

• Provide me agendas and notes ahead of time, an hour or day before the lecture, to allow me to both review the concepts, and to cue in to new terms so I can anticipate them.
• Allow preferential seating that is up front and away from machinery. This will allow me to see the speaker, as I do a little lip-reading.
• Temperature-permitting, kindly shut the classroom door to reduce noise from hallway traffic.
• Use the closed-captions (subtitles) option when showing videos.
• Provide assignments or other information in writing; this can be done in e-mails, et cetera. Give me directions in writing, as e-mails, or as a summary after a discussion.
• Allow the use of a tape player during meetings, classes and during any private appointments.
• When appropriate, allow the use of an assistive listening device (ALD). These are typically used in large meeting rooms. It consists of a receiver with headphones for myself, and a wireless mike for the speaker. This allows the information to transmit directly through the headphones while eliminating most extraneous noises. Using an ALD such as an FM system may be helpful in large lecture halls.

NOTE: Many people mistakenly think that APD is a volume problem, and that talking louder or repeating what was said will help. Rather, what will really help is to re-phrase what is being communicated.

APD is a very frustrating and misunderstood disorder. There is no cure. I have lived with it my entire life, and it is quite liberating to know that it is a true disorder and that it has a name. This allows me the opportunity to learn more about it, and to be better able to find ways to communicate more clearly and more efficiently.

Please understand that my conversational difficulties do not affect my motivation or abilities to learn and perform. I need people to understand that I am not being rude, uncaring, lazy or stupid.

OTHER POSTS DEALING WITH APD:

Students with various learning disabilities may have processing issues. We have to take information in, make sense of it, retrieve information, and then be able to relay information back. Various kinds of learning disabilities interfere with steps in this process, and the interference can happen at more than one step, especially when a person has more than one kind of difficulty. Let’s take the subject of, “Answering a question asked of you”. Most people assume that this is really simple, and thus, easy. Hah! How Hard Can It Be?

Helping the awkward new student seemed like a good idea, so why did it make everything worse? Help was apparently something that is done to you and for you; I was the passive recipient for help. They were strangely disempowering, these activities that were ostensibly for my benefit: Being the Class Project: Reflections Upon False Inclusion.

Why I only appeared noncompliant and dishonest, and how I got into trouble for cheating on the reading worksheet: Failing to Cheat.

What’s really going on when you ask someone a question and get that familiar, “Huh?” More importantly, what can we do to help prevent such situations? Try using Headlining.

How bad does it have to get? At what point does a student’s difficulties with schoolwork demonstrate that they are having significant problems, and therefore need help? Should a student have to fail classes before someone realizes or decides that there is a problem? A, B, C, D and F.

You know, ALL the students would be able to hear and see the videos and other projected notes if the classroom were just designed better: Classroom Audio/Visual: Spectacular or Just A Spectacle?

Sometimes life has its funny moments. One of the problems with my Auditory Processing Disorder is that I cannot understand most song lyrics. There are only a few performers whose vocal range, diction and instrumental styles mesh to create songs that have intelligible lyrics, rather than what I usually hear, which is music with words mingled (or mangled) into the sounds of the instruments. There are some songs that are notorious for being misunderstood by lots of people; apparently entire audiences mis-heard Jimi Hendrix sing, ‘Scuse me while I kiss this guy in “Purple Haze”. The difference is that I misunderstand almost every song I’ve heard, like this one.

One of the problems we run into, sometimes unexpectedly so, is that our Assistive Devices do not “fix” the problem and make it go away. This is discouraging for the person who is newly diagnosed or newly treated for an issue, and who hoped that simply by getting some snazzy piece of equipment, everything would “be back to normal”. But it’s NOT the same.

Captioned (subtitled) television isn’t just for the Deaf and hard of hearing — it’s also great for people with APD, and those for whom English is a second language: Is it CC?

Those great folks at public television station WGBH in Boston, are going to work on providing captioning for all those teeny-tiny screens, our iPods, PDAs, mobile phones and other hand-helds. More Captions, w00t!

One of our strengths as a couple is that we are so different from each other. It’s not that one of us must “make up for” the deficiencies of the other — that would put us into artificial dichotomies of able and disabled, forever relying upon the other in our respective rôles of an incomplete person needing the other to complete them. Rather, it’s that each of us could manage alone as competent individuals, but that together we enrich the other’s experiences of the world. Social Captioning.

On the home front, we’ve recently adopted a new-to-us AT, and it took some nudging from me to get hubby to participate. Soon we were texting messages instead of talking on the phone. We were actually communicating more information, and doing so more often. We also found that what the missives may have lacked in warm fuzzy voice tones, they made up for in reduced marital stress: Read My Clips.

I hate puzzling out voice-mail! Recess: Sunday Funnies.

Everyone in life has to compensate in some manner or another, because no one excels at everything. In fact, the economy depends upon people’s interdependency — earning your living doing things for others is important to the Gross National Product, is important to a town’s sense of community, and is important to a person’s self-worth from feeling useful. The problem with over-compensation is that although I have at times felt that I had vanquished my personal demons of incompetancy by having overcome various failures with landmark achievements, those successes do not mean that I cannot or will not have future problems! Running With the Red Queen.

The person with APD prepares for a job interview: Welcome to the First Ring of Hell.

NOTICE:  

Regretfully, I am unable to give people recommendations for clinicians who can diagnose [Central] Auditory Processing Disorder.   

Contact audiologists (or audiologist+language therapists) in your area to find those who will (in addition to an extensive hearing exam), take a history, and conduct standard APD tests, such as (but not limited to):

• “Staggered Spondaic Word Test” (different two-syllable words each each ear, one word overlapping the other),
• “Phonemic Synthesis Test” (distinguishing different sounds of speech),
• “Speech In Noise Test” (you guessed it: understand what’s being said, despite background noise).

Avoid those who are just hearing-aid fitters, and likewise avoid the numerous google-adverts for those selling the dozens of  “therapies” for APD, tinnitus, et cetera. See this post for an example.

STUDENTS NEEDING CITATIONS:

Here is how you cite this blog posting; for the “cited” space you use whatever date you accessed the page, e.g. 2013 October 25.

Andrea. Andrea’s Buzzing About: Living With (Central) Auditory Processing Disorder[Internet]. San Francisco: Andrea’s Buzzing About: c2006-2013 – [cited ____________ ]. Available from: https://qw88nb88.wordpress.com/living-with-auditory-processing-disorder/ .

More details on citations to blogs may be found here.