auditory processing disorder

Advice that summarizes background research and personal accounts of APD adults to set forth common experiences and impacts

Category: APD description

The Art of APD

An acquaintance is sharing poems written by her 17-year-old daughter who is in the process of getting her suspected auditory processing disorder confirmed. Here are two:

Partially There

“I’m sorry”, she says,
Can you repeat that again?
It’s not that I didn’t hear you,
It’s not that I was unfocused,
It’s not that I don’t care,
I’m just always partially there.
The expression on your face,
Tells me you’re not okay.
I want to help you,
Comfort you,
But you’re too far away.
Your voice trails off,
Mumbling the sounds,
A tear, whimper, pout,
But I don’t know what about.
In a crowd amongst those my age,
Talking, chattering, laughing.
Voices disappear into sounds,
Surrounded in confusion.
Amongst a crowd; I’m alone.
Each word like a puzzle piece,
And I don’t know the whole picture.
Trying to piece together sounds,
Only to be left assuming.
I can’t say that I’m deaf,
I can’t say that I’m normal,
But if you are my friend,
Then I’ll explain it to you again.
I have APD,
It’s permanently part of me.
I find it hard to listen,
And words are often missing,
I’m always just partially there,
But I honestly try to hear.

By: Amy Feltham

You tell me a story
But all I hear is a sentence
You tell me how you feel
But all I see is an expression
You tell me where to go
But all I see is a pointing finger
You tell me a secret
But it’s already forgotten
You tell me what to do
But all I hear is confusion
I’m not one for gossip
I don’t like the rumours
I’m not one for playing instruments
The music only runs through me
I’m not one for socializing
Although I like to see you smile
I’m not one for jokes
But I’ll laugh with you
I’m not one to listen
But at least I tried

By: Amy Feltham

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Are We Clear Yet? Or, Travails at Work, and How Can I Help You Help Me with This Invisible Disability

I was inspired by a description of someone in high school who blogs under the name “apdwarrior17” being accused by her teacher — who knows she has APD — of not paying attention or possibly not trying hard enough, and how that accusation from someone who knows of her disability triggered some discouragement and related emotions to process on top of simultaneously trying to respond to the instruction.

(Her post: http://apdwarrior17.blogspot.com/2013/01/teachers-id-rather-you-did-and-id.html.)

I usually don’t dwell on, or analyze, all the snafus that come up in daily living with this condition. However it seemed that risking sharing too much about a recent communication breakdown might shed some light into how we cope with and react to expectations that are sometimes uninformed or unrealistic.

In my recent example, APD contributed to creating confusion and maybe suspicion about motives or abilities.

My manager had poked her head into my office while I happened to have open a new puzzling spreadsheet she’d emailed us to keep track of our paid time off. I asked her that as long as she was there, could she show me how to use it. Without coming over to look closely over my shoulder as I’d hoped, she essentially said “it will total automatically” and continued off down the hall.

As I looked at it and tried to understand how to use it, first, I got confused because the bi-monthly dates didn’t seem to have a routine order and because it was not filled in for the past few months. When I filled in the times the numbers didn’t appear in the same color as the existing ones — one clue to a difficulty — and a thin border around the table did not extend to the new data. Nor did the value auto-sum, even if I tried to highlight columns and use the “sum” command.

So, I calculated totals on a calculator, wrote in the result, and emailed the filled-in sheet. She sent it back saying I’d filled in previous fiscal year, and that there were two sheets (I’d missed checking for the small tab at the bottom indicating an underlying sheet). I copied the information I had added to sheet one (last fiscal year) to sheet two (this fiscal year) and erased it from sheet one. She wrote back that I had changed the total on the last fiscal year. She attached the form again and told me “this is what I sent on …” citing the exact date from a few months back (not a helpful detail at this point — it had only been sent once). The attachment was the same version I was using. However, in case mine had become corrupted by my blundering, I re-saved her attachment with a slightly different name, pasted the information in, and sent that. She wrote back saying she believed I’d sent the same file and appeared to have accidentally subtracted days rather than hours. She had filled it in and asked me to check it.

I sat there feeling glum for a few minutes about my failure and realizing I had to do a balancing act of getting past those feelings of being blue and mad at myself in order speak up for what I need while being polite and respectful of her.

Then I wrote back saying that I don’t know the program enough to do it without being shown, had re-named the file, and her completed version looked correct. I felt bad she had to go to so much trouble, and apologized.

During our weekly status check meeting that happened to take place later that day, I had a slight sinking feeling when she appeared with the sheet printed out and penciled on and began by showing me how the columns and rows are organized. I said let’s just explore filling it in on the electronic form together (I had my laptop). She asked me to first listen to her tell me about the sections of the form she’d penciled with explanations. So I waited for her to show me her markups, which essentially were showing me time entered into the cells will subtotal in different categories going down and across – which was not a point of confusion.

Then I said again, I learn best by doing, let me try, and opened the form on my laptop (which I bring to the meetings to show things we discuss sometimes). She told me then that if I highlight the cell that was filled in and pull my cursor down to an empty cell below, the lower cell will auto-fill. I tried and nothing happened. Then I noticed the cell had a small triangle in the corner and I pulled it. The cell below auto-filled. She said that I had other technical skills so didn’t realize I didn’t know the software to that depth. I said I could fill out the expense forms she’d made on Excel but this form was beyond my ability to figure out.

It had hurt to be critiqued on email and in person prior to being shown how. I feel I covered myself as having a constructive and professional approach by a) having asked off the bat for assistance and b) clarifying when reiterating what I need that I do not know the software. I only reached a successful resolution by venturing to repeat how I learn best despite being brushed off the first time. Maybe I did overlook whether I was subtracting hours instead of days, but going over what wasn’t done right felt, to me, unproductive and a little punitive if the goal is to discover how to make the form work and to become self-actualized in using it. The scolding didn’t provide information I could use and implement.

I’d attempted to stumble my way through after not receiving instruction upon asking, since I’d rather not create extra work if I can be a help and take care of these details. Perhaps just trying to dive in and do my best was poor judgment – but with APD we are often cutting corners, guessing, and filling gaps as a way to muddle through, and sometimes that works well enough.

Although I cringed a bit at belaboring an analysis of the form itself, it helped to pause and tolerate that so she could express her rationale for how the form was designed – even if the explanation was unnecessary for my understanding, she was wrapped up in wanting to feel heard and understood so I needed to be patient and hear that out even if the explanation felt like being chided or treated as if I am dense.

Some employers might offer more training on filling out their specific forms, so that aspect of running into difficulty may be a little unusual. Where APD came in was my approach. I might not have been fully and specifically clear the first time about what the nature of my not knowing how to complete the form was (since negotiating interactions on the fly and clearly expressing needs is not always very successful). I tried (as can be typical with APD) to live up to assumptions about what I ought to just already be able to do (and ended up having trouble with anyway, despite my best intentions). Being inattentive with days vs. hours might have reflected a little stress and subsequent shortfall in working memory — not taking in every nuance — which is more common when pressured, or sometimes just when trying to mentally organize abstract, dry, detailed, confusing forms and data. Again, that oversight might have been compounded by not wanting to make waves or draw attention to my difficulty, and so having tried anyway.

She has commented previously that working with financial documents is not a strong suit and difficult to focus on for her, so maybe that discomfort with this sort of material was part of why the responses felt a little blaming or like she was looking down her nose a little and attempting to dissect my errors (that resulted from my guessing and trying my best) without determining the underlying source of difficulty or offering instruction. (An example of the tone being a little accusatory was she asked if I had intended to change the total on the first fiscal year — I think it was a rhetorical question meant to soften pointing up that apparent confusion; I doubt she truly wondered if that had been my intent, and hope I don’t seem like I would arbitrarily start changing an already agreed-upon figure for some reason . . .). As for her style, she is not someone who is strong at hand-holding someone through something new or being asked to shift gears and provide a lesson, and I am not complaining about that — just observing that as an employee, it is our task to adapt to our employer’s style and preferred way of operating.

With APD, because the challenge is not apparent, it can be hard to feel deserving, or be emphatic enough, when someone unusual like us needs more reinforcement with a new task than the average person would. The natural tendency from the people we are addressing seems to be to have that need tuned out and dismissed, or to be treated as if we are then messing up for some unknown reason and need to be called on our failure. However, even if the root cause is invisible, politely and respectfully advocating or persisting with a request may be one of the best possible ways out of a dilemma that arises when there are unrealistic expectations, negative assumptions, or a communications breakdown. Because it is our issue, nine times out of 10, it may come to us to be the one advocating what we need rather than someone else remembering we are different. Having to make nine-tenths of the effort does get old, but I don’t know what the alternative is — it is what is in our power to control.

If the disability has not been disclosed, one way to describe the nature of the need is to refer to it as a “style”. Raising the issue may be awkward sometimes even though being sensitive to where others are coming from can help to build a bridge. Even if interactions do not go perfectly well or very smoothly, the best I have come up with is to either risk speaking up while realizing the experience won’t always be finessed completely, or just withdrawing and trying to not create friction. I don’t like that it sometimes feels the choice is between speaking up poorly — say, in an unintentionally brusque or abrasive manner, perhaps partially due to missing social cues or slow processing speed — or not at all. But about the most we can hope for is to just be accepted with our quirks, idiosyncrasies, and shortfalls — and positive intentions.

Resources – Additional Explanations about APD

I have come upon a few explanations about auditory processing disorder that are succinct and clear. One mom of an APD boy posted a couple of topics:

Thanks to Bonzlee for posting those – I hope more people will discover and benefit from them now!

Also, a disabilities ministry in Buffalo, N.Y. has the following list online that seems accurate and clear:

(http://www.buffalodiocese.org/Portals/0/disabilities/Helpful%20Tips%20for%20Central%20%20Auditory%20%20Processing.pdf)
CENTRAL AUDITORY PROCESSING
The basic problem is perceptual or cognitive inefficiency or delay in perceiving, processing,
organizing or responding to what is heard – primarily, and most important in the classroom, it refers to the speed and effectiveness with which a child can process the spoken word.
Five points to know from parents:
1 . My child has trouble listening. Please understand that this is a learning problem and not a
behavior problem.
2. My child needs to hear things more than once to understand them. Please send important material home so that we can review it with them.
3. My child may have trouble filtering out background noise, and may be sensitive to sounds we wouldn’t notice. Please understand that they are trying to pay attention.
4. My child will benefit from being seated in clear sight of you, and having as many visual aids and cues as possible.
5. Please keep the lines of communication open between our home and your program . My child needs all the adults in her life working together.

Helpful Tips:

  • Background noise may be extremely distracting – a seat near the blackboard or front of class may help.
  • Be ready to repeat things – hearing is not a problem, but absorbing and processing the information can be laborious.
  • Information needs to be presented in a multisensory way – that is, visual, auditory, kinesthetic and tactile. Children with these difficulties have a difficulty in obtaining information through the auditory modality, so it is important that visual materials are used when presenting new learning.
  • Do not expect immediate answers to oral questions, or assume that because the child’s hand is not up, the child does not know the answer – the right answer may be there, but takes time to be formulated.
  • Allow for some measure of frustration – remember that the child may be continuously undergoing a ‘tip-of-the-tongue’ experience.
  • Word retrieval can be aided by providing structure words or the key words which the child is likely to use: this can help them write more purposefully and ease the frustration in trying to access words which they may have difficulty accessing.
  • Let the child know you are aware of their difficulty, and that you are sympathetic – but that you have high expectations.
  • Be specially generous with praise and cautious with criticism. Praise can be a natural motivator as long as the child feels the praise is genuine and deserved. It is important to let the child know why they are being praised rather than just to provide praise. In a behavioral reward system with extrinsic rewards such as stickers or points, the child can easily see why they are being praised. This can be an effective motivator, as long as the rewards are meaningful and appropriate.

I hope these are helpful. (The last one was mentioned in a comment by me on this blog, but I thought it would be good to gather a few resources in a single place.)

Subtypes of APD

From a checklist by audiologist Judith Paton of San Mateo, Calif., whose explanations seem helpful:

Tolerance/Fading Memory” subtype
Symptoms include:

  • Often seems to “ignore” people, especially if engrossed.
  • Hears less well, or is less attentive/productive, in ordinarily busy surroundings.
  • Difficulty following a series of spoken directions.
  • Unusually forgetful of information previously memorized (such as multiplication tables, correct spelling), or of household or school routines and responsibilities, despite frequent reminders.

“Decoding” subtype
Symptoms include:

  • Difficulty with phonics (sounding out words) approach to reading.
  • Confuses similar-sounding words; may learn words wrong.
  • Poor speller: errors phonetically correct (e.g. “littul” for little) or seem random (wrong sounds, sounds/syllables missing/added).
  • Problems with speech clarity or articulation, or with grammar, now or in the past.

“Integration” subtypes
Symptoms include:

  • Marked difficulty reading or writing efficiently, despite knowledge of phonics.
  • Needs to (or should) ask many extra questions to clarify task before starting; “doesn’t get the picture.”
  • Interprets words too literally, becoming confused or suffering hurt feelings.
  • Poor “communicator” -— fails to explain, apologize, negotiate, defend.
  • Speaks or writes “telegraphically” -— omits facts or switches topic, so that audience cannot follow train of thought.

“Prosodic” subtype (often seen with NLD or non-verbal learning disability)
Symptoms include:

  • Absorbs details and facts, but misses the “big picture” — cannot prioritize or summarize information.
  • Insensitive to tone of voice; may misjudge speaker’s mood or be unintentionally tactless.
  • Problems with cause-and-effect reasoning; difficulty surmising the unspoken rules of conversation, play, and other situations.

Another Voice – Auditory Processing is an Invisible Disability

My acquaintance Bonnie just found out eight months ago she developed APD as she was getting her hearing aids adjusted over the course of a couple of years.

She wrote the following letter to her adult kids to try to help them understand, and offered to share it in case it helps others to read how she expressed what she wanted them to know about its effect:

To my dearest children,

I thought I would put in writing what is going on with my hearing. I can explain it verbally, but, sometimes when written, it can be understood better. So here goes:

Auditory Processing Disorder is an invisible disability, a developmental condition that interferes with the processing of speech. Although my hearing is not good (40% loss) I have a problem with perceiving and decoding what people are saying. (Even if I had perfect hearing I would have the decoding problem … it’s not governed by my hearing loss).

Sometimes although the other person knows what they mean or what they’re saying, what I think they mean or saying are two different things. It’s like having poor cell phone reception, where the signal gets static or drops out.

How it affects me:

It’s difficult trying to keep up with conversations or to understand what’s being said, especially when there is “background” noise. This is especially true when I’m on the phone. This means I must spend extra mental effort to unscramble words. Sometimes it’s the decoding where I bog down. What I think I heard and what was actually said seems fine during the blah blah blah part, and then at the “mumble” section, the letters go bad and I have no idea what the words are. My brain goes limp at this point, thus the puzzled look or handing the phone off to someone else. 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. Discriminating between voices and background noises is difficult. Situations with multiple people speaking are especially challenging because all the conversations and background noises keep weaving together.

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 many times I don’t have a clear idea of what the whole conversation was about, because I’ve not had much extra short-term memory left for storage. This again creates mental fatigue, especially at the end of a day.

Verbal directions can be difficult. I have trouble understanding, recalling and keeping straight a series of commands, i.e. … directions on how to get somewhere, steps involved in figuring a deal etc. … Additionally, many numbers/words sound very similar, frustrating for sure.

I am trying to learn how to cope. Talking one on one in a quiet area is great. When it gets to loud in my office, I can shut the windows on each side of me, or even the door if necessary. Speaking slowly is also important as it gives my brain time to “decode” what’s being said. And, if you notice that I still didn’t get it, try rephrasing what you are trying to say. Tapping me on the shoulder, or calling my name before you speak to me will get my attention and thus I can concentrate on the conversation. Many people think that APD is a volume problem and that talking louder will help, not so. My hearing aides will help with my hearing loss as a whole but they can not help with the APD.

It’s also going to affect my speech response to some degree as I’m trying to “decode” and answer back … it equals a slow response at times or at times I have a problem pronouncing my words properly… sort of like being drunk and trying to talk without slurring.

Meantime, my goal is to learn to lip read so that when the time comes that my brain decides it doesn’t what to decode anymore … I’ll have something to fall back on.

There is no cure for APD. It’s something that I will have to live with and cope with. It will allow 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 no affect my motivation or abilities to learn and move forward. I’m stubborn like that.

I’m not looking for pity or want you to feel sorry for me as I’ve been blessed with so many things, i.e. … I can see, talk and get around without any assistance. I’ve been blessed with you all as my children and I couldn’t ask for anything more. I just wanted you to understand what’s going on, or not.

I love you all,

. . . Bonnie adds she has two grown sons, their wives, a grandson and a very supportive boyfriend (as I recall, she is in her 50s). Her journey to a diagnosis was, “I just couldn’t hear well. I had an MRI of my brain to make sure everything was OK and went back to my ear, nose throat doctor for exams of my ears and all was perfect. After my old audiologist retired, I had to get a new one and after much more testing, I was diagnosed. Actually, as we get older, it is something that can be acquired as our brains naturally aren’t functioning at top speed … I’m still having some other difficulties, and I’ll be going back again, as I seem to have some clumsiness about me and my hearing is diminishing more so.. but, that is to be expected from what I understand. I do hope my article helps others and thanks for your support as well.”

APD Can Mean That Being Atypical Challenges Mutual Understanding

On the topic of APD (also known as CAPD) and its impact, the following excerpts and/or paraphrases from an online discussion group for adults with APD rang true for me. We may exhibit idiosyncrasies, but have some commonalities of experience:

  • It’s amazing how complex this disorder is, one recently diagnosed woman observed.
  • Acceptance, understanding and support by family, friends and partners are essential, said a co-moderator.
  • The ability to hear/process sounds and related symptoms varies and is affected by many things, such as fatigue, noise, stress, and hunger, said one member.

She voiced an experience shared by many, saying:

  • It hurts so bad to be ridiculed about something that you have no control over. Many people do not understand APD is permanent and ongoing. Just because it is not visible or I do not reveal it, does not mean I do not experience its symptoms.

Several forum members said:

  • They did, or almost did, have “nervous breakdowns” from the pressure, ending up at a hospital with panic attacks, for instance, when trying to keep up, fit in, perform, and deal with hostility and unsupportiveness for being different all became too much.

Meanwhile, it was heartening when, in the comment section of the blog Andrea’s Buzzing About, Laura wrote as a non-APD’er: “Boy, do I feel like crap after reading how hard life is with CAPD. … My husband and I are having severe marital problems … traditional Speaker/Listener exercises are not working … I took his behavior personally … would … explain myself over and over … He construes this as I am … insisting on changing his opinion … I holler at him ‘Listen to me! What I said was…..!’ I experience anger and frustration …” (especially when discussions are lengthy). [http://qw88nb88.wordpress.com/living-with-auditory-processing-disorder/] (1)

Reference:
1. Andrea. Andrea’s Buzzing About: Living With (Central) Auditory Processing Disorder[Internet]. San Francisco: Andrea’s Buzzing About: c2006-2008 – [cited Dec. 30, 2012]. Available from: http://qw88nb88.wordpress.com/living-with-auditory-processing-disorder/ .