CAPD terminology (Audi says I'm "hearing impaired.")

[joycem137]

Yesterday I was diagnosed with CAPD, a hearing disorder that is located in the brain beyond the ear, not the ear itself. According to the ADA, I have a "physical hearing impairment" that is protected under the ADA. My audi described me as "hearing impaired."

According to what I've learned in ASL class, terms like these are considered offensive by the Deaf/HoH community. "Hearing impaired" "hearing disorder" "hearing impairment." I understand that these terms are all inappropriate. I also understand that the terms "Deaf" and "Hard of Hearing" are more appropriate to apply to people with these sorts of hearing characteristics.

I'm trying to figure out what the best language is to describe my particular "hearing disorder." I dislike the language used by the audi, but I'm not entirely sure what else to use. I'm kinda hearing, but not really, since under certain circumstances my hearing falls apart and I can't hear people, can't follow conversation, etc. I'm kinda hard of hearing, but again, not really, because I hear just fine in some circumstances. I'm fairly certain the terms "Deaf" and "deaf" don't apply to me, from what I think I know of their meanings.

So far, I've decided that "Kinda hard of hearing" is the easiest way to quickly communicate the majority of my experience to someone else. It's not 100% accurate, but it's close enough for those situations where I need to explain my needs to someone. "Could you repeat that or write it down? I'm kinda hard of hearing." I see this being more useful in hearing environments than Deaf/HoH ones.

I'm still pondering what to use in a Deaf/HoH environment. My ASL teacher suggested "Hard of Hearing," or "hearing person with small hearing loss" as a simple way to explain. Neither are entirely accurate, but what the hey.

Any thoughts on what the appropriate terminology is for someone that has CAPD?

 

[Bottesini]

My older daughter has CAPD, and she is moderately HOH.

So she is hard of hearing. No need to say anything else if saying anything at all.

Just say you have CAPD. It's something different from deafness. The description of your doctor is ok. The other thing they could say is you are processing impaired.

 

[Jazzberry]

Would it be fair to say that CAPD is like dyslexia but for hearing words not reading words?

 

[joycem137]

My older daughter has CAPD, and she is moderately HOH.

So she is hard of hearing. No need to say anything else if saying anything at all.

Just say you have CAPD. It's something different from deafness. The description of your doctor is ok. The other thing they could say is you are processing impaired.

So you're suggesting that I describe myself to Deaf/Hoh people as "Hearing person with CAPD."

Do you think that hearing people would know what CAPD is if I ran into a situation where I had to describe it to someone? I was thinking that "HoH" would be a faster way to quickly communicate my needs without having to get into a long conversation about what the heck CAPD is. Or would that be appropriative/misleading?

 

[Frisky Feline]

I understand where you are coming from.

If you just ran into a situation where you had to tell someone right away when they were trying to talk to you. If i were you, I would say, " i can't hear you well, just write down that would be easier for me" or your words of telling them. No point for you to explain every time you bump into someone you dont know who.

If you know this person longer then explain about CAPD.

 

[joycem137]

Would it be fair to say that CAPD is like dyslexia but for hearing words not reading words?

Hmmm... I think I've heard it described that way, but I don't experience it that way.

According to the tests and my experiences, my hearing is pretty good in a quiet environment. I may have to ask people to repeat themselves a little more often than your average hearing person, but it's not too much of a problem.

But add noise, even just a little bit, and my comprehension of speech starts to drop rapidly. I start hearing words as meaningless jumbles of noises that don't make any sense. "Let's go to the car wash" could reach my ears as "Leshoaaaassh"

Throw me into a noisy situation like a party full of hearing people, and I'm basically incapable of functioning. I sit in the back of the room and don't talk to anyone because I can't understand anyone. It's all a meaningless jumble of babble and noise that I can't understand.

So yeah, it feels more like all the words sort of mush and blur together, and don't have any meaning. It comes through as meaningless babble that I can't understand.

Also, due to the particulars of my version of CAPD, I also experience issues around noticing noises in the background. If I'm reading a book, watching TV, browsing the web, or anything like that... and an alarm goes off or someone calls my name, there's a really good chance I won't notice. I guess my brain just doesn't pick up the fact that an important noise just occurred. I just sit there "ignoring" the alarm or person or whatever, because I don't hear them. And that definitely doesn't seem like dyslexia.

 

[jillio]

Would it be fair to say that CAPD is like dyslexia but for hearing words not reading words?

No, that would be "pure word deafness". CAPD is actually a neurological disorder. As is "pure word deafness".

 

[Bottesini]

So you're suggesting that I describe myself to Deaf/Hoh people as "Hearing person with CAPD."

Do you think that hearing people would know what CAPD is if I ran into a situation where I had to describe it to someone? I was thinking that "HoH" would be a faster way to quickly communicate my needs without having to get into a long conversation about what the heck CAPD is. Or would that be appropriative/misleading?

I think Frisky Feline gave you the best suggestion.

 

[Jazzberry]

Hmmm... I think I've heard it described that way, but I don't experience it that way.

According to the tests and my experiences, my hearing is pretty good in a quiet environment. I may have to ask people to repeat themselves a little more often than your average hearing person, but it's not too much of a problem.

But add noise, even just a little bit, and my comprehension of speech starts to drop rapidly. I start hearing words as meaningless jumbles of noises that don't make any sense. "Let's go to the car wash" could reach my ears as "Leshoaaaassh"

Throw me into a noisy situation like a party full of hearing people, and I'm basically incapable of functioning. I sit in the back of the room and don't talk to anyone because I can't understand anyone. It's all a meaningless jumble of babble and noise that I can't understand.

So yeah, it feels more like all the words sort of mush and blur together, and don't have any meaning. It comes through as meaningless babble that I can't understand.

Also, due to the particulars of my version of CAPD, I also experience issues around noticing noises in the background. If I'm reading a book, watching TV, browsing the web, or anything like that... and an alarm goes off or someone calls my name, there's a really good chance I won't notice. I guess my brain just doesn't pick up the fact that an important noise just occurred. I just sit there "ignoring" the alarm or person or whatever, because I don't hear them. And that definitely doesn't seem like dyslexia.

That's a great explanation -- thanks. FWIW, I also agree with Frisky Feline's suggestion.

No, that would be "pure word deafness". CAPD is actually a neurological disorder. As is "pure word deafness".

Interesting -- thanks! I don't agree with the specialists who decided to name it that -- but this isn't the first time I disagreed with specialists.

 

[joycem137]

That's a great explanation -- thanks. FWIW, I also agree with Frisky Feline's suggestion.

It sounds similar to what I was thinking. I'll avoid using the "HoH" reference.

Since you sound interested, I'll share the explanation for my problem that my audi gave me. Apparently, people without my particular flavor of CAPD have a sort of filter in their brainstem area that is capable of amplifying "important" sounds while quieting "unimportant" sounds. In a noisy situation, it can amplify the sounds of people's speech to be louder than the surrounding noise, even if they are actually of equal volume.

But in me, that filter doesn't work quite right. As a result, the problem isn't that I don't hear enough, it's that I hear to much. I'm hearing all of the sound information, unimportant and important, at unmodified volume levels. It means I have to work much harder to pick out the "important" sounds like speech from the "unimportant" background sounds.

I guess it is a neurological disorder. The audi suspects that it is a result of brain damage due to temporary oxygen deprivation during my birth. My umbilical cord wrapped around my neck and suffocated me during birth, and I wasn't breathing for a short while. Not bad enough to cause serious damange, but enough to permanent damage my ability to process sound.

 

[jillio]

That's a great explanation -- thanks. FWIW, I also agree with Frisky Feline's suggestion.



Interesting -- thanks! I don't agree with the specialists who decided to name it that -- but this isn't the first time I disagreed with specialists.

What? "Pure word deafness?" That is exactly what the disorder entails, though. Just like Central Auditory Processing Disorder is referring not to actually perceiving sound, but in an inability to process it in the auditory centers of the brain.

 

[jillio]

It sounds similar to what I was thinking. I'll avoid using the "HoH" reference.

Since you sound interested, I'll share the explanation for my problem that my audi gave me. Apparently, people without my particular flavor of CAPD have a sort of filter in their brainstem area that is capable of amplifying "important" sounds while quieting "unimportant" sounds. In a noisy situation, it can amplify the sounds of people's speech to be louder than the surrounding noise, even if they are actually of equal volume.

But in me, that filter doesn't work quite right. As a result, the problem isn't that I don't hear enough, it's that I hear to much. I'm hearing all of the sound information, unimportant and important, at unmodified volume levels. It means I have to work much harder to pick out the "important" sounds like speech from the "unimportant" background sounds.

I guess it is a neurological disorder. The audi suspects that it is a result of brain damage due to temporary oxygen deprivation during my birth. My umbilical cord wrapped around my neck and suffocated me during birth, and I wasn't breathing for a short while. Not bad enough to cause serious damange, but enough to permanent damage my ability to process sound.

The problem does not actually occur in the brainstem, but in the auditory processing centers. Lesions to specific areas will cause distinctive types of CAPD.

 

[dogmom]

I've been considering sometime going to determine if I also have CAPD as I already have LD and fit many of the symptoms. I did discuss with an audi who is experienced in testing for it and who saw my audiogram from hubby's HA specialist.

 

[Jazzberry]

It sounds similar to what I was thinking. I'll avoid using the "HoH" reference.

Since you sound interested, I'll share the explanation for my problem that my audi gave me. Apparently, people without my particular flavor of CAPD have a sort of filter in their brainstem area that is capable of amplifying "important" sounds while quieting "unimportant" sounds. In a noisy situation, it can amplify the sounds of people's speech to be louder than the surrounding noise, even if they are actually of equal volume.

But in me, that filter doesn't work quite right. As a result, the problem isn't that I don't hear enough, it's that I hear to much. I'm hearing all of the sound information, unimportant and important, at unmodified volume levels. It means I have to work much harder to pick out the "important" sounds like speech from the "unimportant" background sounds.

I guess it is a neurological disorder. The audi suspects that it is a result of brain damage due to temporary oxygen deprivation during my birth. My umbilical cord wrapped around my neck and suffocated me during birth, and I wasn't breathing for a short while. Not bad enough to cause serious damange, but enough to permanent damage my ability to process sound.

Your audi's explanation makes a lot of sense. Thanks for sharing it.

I and most other people with hearing loss also have a problem hearing in noise. I think its interesting that we have similar problems for different reasons.

Just for the heck of it I'll try to summerize some posts from other HoH people on lists and web sites where they explained the reason why HoH have trouble hearing in noise. I hope you don't think I'm hijacking your thread, but I think comparing where and how the hearing system can break down can add to an understanding of how the typical hearing system works.

The explanations I've read said that the nerve pathway between the ear and the brain is a two-way street. This would help explain why the filter in the brainstem your audi mentioned can work. It's getting information from the brain as to what sounds needs to be dampened and what sounds need to be amplified, and its getting input from the ear so that it can monitor the ear's response to the instructions and made additional adjustments if needed. This also explains why hearing aids will never let HoH people hear as well as most hearing people no matter how advanced they get because while hearing aids alter the sounds going into the ear it is not directly a part of the two-way nerve pathway between the ear and the brain.

To the extent that the hearing aid augments hearing, that is the extent to which the ear-brain nerve pathway cannot be influenced by feedback based on what is going on in the environment.

So for example, lets say you, a hearing person without CAPD, and I are trying to have a conversation in a room with an extremely noisy air conditioner. The hearing person's brain (I think the auditory cortex) will send nerve signals to the cillia in the cochlear to dampen the sounds coming from the air conditioner and to heighten the sounds coming from our voices. It will keep sending signals to the cillia to modify what sounds should be dampened and amplified as needed.

My brain won't be able to do this because the hearing aid is responsible for my receiving most of the sound, not my damaged or missing cillia in my cochlear -- and my hearing aid is not physically part of this loop between the brain and the ear.

As per your explanation, you won't be able to do that because of something that is occurring or not occurring in the brainstem.

So, we end up having similar issues even though they occur for different reasons. I think its pretty fascinationg.

ETA: Just read Jillian's post. So I would change brainstem to auditory cortex in my post.

 

[jillio]

I've been considering sometime going to determine if I also have CAPD as I already have LD and fit many of the symptoms. I did discuss with an audi who is experienced in testing for it and who saw my audiogram from hubby's HA specialist.

I would check with a neurologist before consulting with the audi. Just a suggestion.

 

[jillio]

Your audi's explanation makes a lot of sense. Thanks for sharing it.

I and most other people with hearing loss also have a problem hearing in noise. I think its interesting that we have similar problems for different reasons.

Just for the heck of it I'll try to summerize some posts from other HoH people on lists and web sites where they explained the reason why HoH have trouble hearing in noise. I hope you don't think I'm hijacking your thread, but I think comparing where and how the hearing system can break down can add to an understanding of how the typical hearing system works.

The explanations I've read said that the nerve pathway between the ear and the brain is a two-way street. This would help explain why the filter in the brainstem your audi mentioned can work. It's getting information from the brain as to what sounds needs to be dampened and what sounds need to be amplified, and its getting input from the ear so that it can monitor the ear's response to the instructions and made additional adjustments if needed. This also explains why hearing aids will never let HoH people hear as well as most hearing people no matter how advanced they get because while hearing aids alter the sounds going into the ear it is not directly a part of the two-way nerve pathway between the ear and the brain.

To the extent that the hearing aid augments hearing, that is the extent to which the ear-brain nerve pathway cannot be influenced by feedback based on what is going on in the environment.

So for example, lets say you, a hearing person without CAPD, and I are trying to have a conversation in a room with an extremely noisy air conditioner. The hearing person's brain (I think the auditory cortex) will send nerve signals to the cillia in the cochlear to dampen the sounds coming from the air conditioner and to heighten the sounds coming from our voices. It will keep sending signals to the cillia to modify what sounds should be dampened and amplified as needed.

My brain won't be able to do this because the hearing aid is responsible for my receiving most of the sound, not my damaged or missing cillia in my cochlear -- and my hearing aid is not physically part of this loop between the brain and the ear.

As per your explanation, you won't be able to do that because of something that is occurring or not occurring in the brainstem.

So, we end up having similar issues even though they occur for different reasons. I think its pretty fascinationg.

ETA: Just read Jillian's post. So I would change brainstem to auditory cortex in my post.

Yes, the cillia, the neuronal pathways, and the areas in the brain specific to processing at different levels or different types of auditory stimuli all work together to determine that which is background and what is important. The cillia are actually the mechanism responsible for sending the stimulus to the 8th cranial nerve, which then uses the neuronal pathways leading to the auditory cortex rather than the brain sending signals to the cillia.

 

[Jazzberry]

No, that would be "pure word deafness". CAPD is actually a neurological disorder. As is "pure word deafness".

What? "Pure word deafness?" That is exactly what the disorder entails, though. Just like Central Auditory Processing Disorder is referring not to actually perceiving sound, but in an inability to process it in the auditory centers of the brain.

I probably misunderstood your post. I think now you are saying that CAPD is "pure word deafness" and I originally thought you were saying that the neurological disorder where people perceive hearing words out of the order that they are spoken is "pure word deafness".

 

[jillio]

I probably misunderstood your post. I think now you are saying that CAPD is "pure word deafness" and I originally thought you were saying that the neurological disorder where people perceive hearing words out of the order that they are spoken is "pure word deafness".

No, I think you got it right the first time. "Pure word deafness" is a different disorder than CAPD, but I think what you are describing would be related more to one of the aphasias. Pure word deafness involves the inability to understand speech, even though the auditory mechanisms are all intact. It is associated with damage to the temporal lobes, specifically on the left side.

 

[joycem137]

The problem does not actually occur in the brainstem, but in the auditory processing centers. Lesions to specific areas will cause distinctive types of CAPD.

Huh. I distinctly recall the audi saying the problem was in the brainstem. She showed me this map of the auditory system in the brain, with lines representing nerves drawn from the ears down to the brainstem, then up into the rest of the brain. Then she pointed at the brainstem, told me about the filter, and told me that based on her tests and my reported experiences, this is where the problem is. My report even explicitly mentioned the brain stem several times.

Is she wrong? Am I misunderstanding her? Am I misunderstanding your explanation?

 

[joycem137]

No, I think you got it right the first time. "Pure word deafness" is a different disorder than CAPD, but I think what you are describing would be related more to one of the aphasias. Pure word deafness involves the inability to understand speech, even though the auditory mechanisms are all intact. It is associated with damage to the temporal lobes, specifically on the left side.

Yeah. I can understand speech just fine in a quiet environment. In fact, I think the tests showed that I have above average hearing when not around noise.