I've ASD. Not checked for APD. Are we hearing?

[VisualistGang]

I'm diagnosed with ASD, but according to my hearing test my hearing is perfectly fine and I wasn't sent to a specialist to check if I've APD. The test never checked speech comprehension. It was only beeps, melodies and animal sounds.

Pre-2020 I felt like I was like the majority of people. I could understand most of what people said, like an average hearing person. The only ways I was different was I didn't like being on the phone or use a radio because of I don't hear intonations very well, may miss a bit of context, emotions, irony and it was like listening to a 2nd language instead of my 1st one. I could understand most of what people said with a lot of efforts, but would be exhausted afterward. I prefer face-to-face conversations over conversations where I can't see the person. E.g. someone standing behind me would require more effort. I can't hear the difference between same gender and same aged people's voices. They all sounds the same to me. I could however hear the difference between accents/dialects and languages. By voice alone I don't recognize my own family members or friends. If someone are the same gender, age and speaks the same dialect, they sounds the same to me. I don't remember voices well either. I relies a lot on body language and facial expressions, as a visual person. To me people looks unique and have an unique personality, but not voices. I learned other could identify voices because of they told me who they were talking to on the phone and I couldn't understand it without them asking who it was.

After 2020 began, I noticed my comprehension of speech changed. I probably went from an average hearing person's comprehension to barely understanding anything, because of the 2020-restrictions. Sometime it feels like I can only hear 1 or 2 words out of 10. Most of the time when I answer people, I guess based on context and visual cues. To me it's like they speaks a foreign language to me. I've noticed there are several things that have happen. When people wears masks, I can't hear what's being said because of the sounds get muffled by the fabric and I can't see their facial expressions. Many also tends to be more shy, gesture less, talk softly and I feel the language has changed a lot since the pandemic started. I've noticed many new words or slangs which are unfamiliar to me gets used, different speech pattern and people speaking unclearly. It has become more common for both masked and unmasked to speak more softly. These changes are in particularly common for the younger generations.

Nowadays, I prefer written communication and gesture when interacting with people in the public because of these changes. Some has been fine with it and other aren't comfortable with me wanting to write and gesture instead of speaking. I've received criticism for it and some thought I was faking a "disability". In addition to struggle understanding spoken language, I also can't hear my own voice when I wear a mask. I can hear it without a mask. I'm currently learning sign language and is a new beginner. I started for a few months ago. Learning a sign language takes some effort, but it's easier to learn than my first language and English. Spoken languages tends to be much harder than written ones. I feel lonely and that I don't have any place to go because of today's situation. My doctor says my hearing is perfectly fine and I grew up with spoken language in the majority's culture. So, technically I'm hearing. But I feel I don't quite fit in the speaking world. It may or may not be temporarily - I don't know. I don't understand what shop employees, family members, friends, class mates etc. are saying because of the 2020-changes. It feels like things changed almost overnight because of the 2020 circumstances.

Sometimes I just wish I could say I was Hoh/deaf, because of it's easier for most people to understand and almost none have heard about ASD or APD before - from my experience. In addition I've no right on interpreters, notetakers and such in school and work, because of I'm hearing.

 

[EllietheEncourager]

There are studies being conducted now to show that HOH is much more prevalent than we thought; 2020's new ways have exposed it. There are many types of HOH and hearing loss; including having difficulty with spoken language. Being able to tell Something is being said and understanding what is being said is a big difference; I struggle with it too.
I'm sorry you have had negative reactions when letting others know about these struggles.
Have you seen an audiologist? It may well be that you are in fact, HOH on some level.

 

[VisualistGang]

There are studies being conducted now to show that HOH is much more prevalent than we thought; 2020's new ways have exposed it. There are many types of HOH and hearing loss; including having difficulty with spoken language. Being able to tell Something is being said and understanding what is being said is a big difference; I struggle with it too.
I'm sorry you have had negative reactions when letting others know about these struggles.
Have you seen an audiologist? It may well be that you are in fact, HOH on some level.

I've only taken a simple hearing test when I visited my doctor. I was never sent to a specialist. On the hearing test I scored the same as an average hearing person. I heard all the beeps, melodies and animal sounds I was supposed to hear. My doctor said it wasn't necessary to send me to a specialist and that she just assumed it's my ASD.

 

[Barbaro]

Visualist Gang, it sounds like you're relapsing. I would recommend you be tested for APD, CAPD and SPD. Make sure you find a right audiologist who has background in APD and CAPD. Your doctor should have referred you to psychiatrist or behavioral neurologist for SPD. What is your doctor's background?

Have you been experiencing vertigo and bad balance? Do you have a history of constipation and digestive issues?

 

[EllietheEncourager]

I've only taken a simple hearing test when I visited my doctor. I was never sent to a specialist. On the hearing test I scored the same as an average hearing person. I heard all the beeps, melodies and animal sounds I was supposed to hear. My doctor said it wasn't necessary to send me to a specialist and that she just assumed it's my ASD.

This man talks at length about being HOH; specifically having trouble understanding speech. I hope this helps.

Barbaro was right; your doctor should have given you a referral to an audiologist. I'm sorry for what you are going through and hope help is on the way.

 

[VisualistGang]

Visualist Gang, it sounds like you're relapsing. I would recommend you be tested for APD, CAPD and SPD. Make sure you find a right audiologist who has background in APD and CAPD. Your doctor should have referred you to psychiatrist or behavioral neurologist for SPD. What is your doctor's background?

Have you been experiencing vertigo and bad balance? Do you have a history of constipation and digestive issues?

Thanks for reply. My doctor is just a regular in-office doctor. I don't know what it's called in English. It's the type of doctor you goes to if you're curious about something and their job is finding out which conditions you may have - to be able to send you to a specialist who can examine you better.

I've never experienced vertigo or bad balance before, but I've experienced mild constipation before. The reason for that may be because of I don't eat as much fiber as I should and don't like exercising. I don't eat as much bread like my friends do because of I don't like it.

 

[Barbaro]

Thanks for reply. My doctor is just a regular in-office doctor. I don't know what it's called in English. It's the type of doctor you goes to if you're curious about something and their job is finding out which conditions you may have - to be able to send you to a specialist who can examine you better.

I've never experienced vertigo or bad balance before, but I've experienced mild constipation before. The reason for that may be because of I don't eat as much fiber as I should and don't like exercising. I don't eat as much bread like my friends do because of I don't like it.

General practitioner, right?

Are you a picky eater? Some people with ASD tend to be picky eaters. If your doctor refuses to give you a referral, find another doctor who is familiar with ASD, APD and SPD who can give you a referral. Please see an audiologist. Some doctors can be dick and think there is nothing wrong with you.

When you were a kid, did you have trouble sleeping? Does it get better or not over time?

 

[VisualistGang]

General practitioner, right?

Are you a picky eater? Some people with ASD tend to be picky eaters. If your doctor refuses to give you a referral, find another doctor who is familiar with ASD, APD and SPD who can give you a referral. Please see an audiologist. Some doctors can be dick and think there is nothing wrong with you.

When you were a kid, did you have trouble sleeping? Does it get better or not over time?

I'm not a picky eater. I likes most food types. I don't like eating bread and I don't exercise as much. Thanks for your advice! It's very much appreciated.

I had some nightmares as a child, but I've only had trouble sleeping in periods. I struggled sleeping for a couple of weeks after seeing a horror movie with an accident when I was 13 (because of false advertisement) and a couple of weeks when high school showed me a bloody documentary with real images when I was 18. The reason they did it's because of it was a traffic safety campaign. Other than that, I had no problem with sleep. Lately, sleep has been fine and I'm 20 y/o.

 

[Barbaro]

I'm not a picky eater. I likes most food types. I don't like eating bread and I don't exercise as much. Thanks for your advice! It's very much appreciated.

I had some nightmares as a child, but I've only had trouble sleeping in periods. I struggled sleeping for a couple of weeks after seeing a horror movie with an accident when I was 13 (because of false advertisement) and a couple of weeks when high school showed me a bloody documentary with real images when I was 18. The reason they did it's because of it was a traffic safety campaign. Other than that, I had no problem with sleep. Lately, sleep has been fine and I'm 20 y/o.

It sounds like a mild SPD case. It is likely passed as you get older. Hope you find a good audiologist. By the way, I am a mom of a 5 years old with ASD. You can try Nordic natural Omega-3 fish oil and Extra Virgin Olive Oil to reduce inflammation. Try to cut down omega-6 oils like safflower and sunflower oil because they cause inflammation. Those omega-6 oils in frozen food and health food are common now. Good luck!

 

[deerheart12]

Sometimes I just wish I could say I was Hoh/deaf, because of it's easier for most people to understand and almost none have heard about ASD or APD before - from my experience. In addition I've no right on interpreters, notetakers and such in school and work, because of I'm hearing.

I believe if you have a disability you should be able to get notetakers and any extra help for college classes. I also think if you really do benefit from sign language you should be able to request an interpreter or a captioner. Do get retested for your condition whether it's hearing test or Auditory processing disorder etc. when you can so you have something to proof that you do have an disability and that should allow you to get the help that you need.

As for now the pandemic with the masks and all. It is definitely a challenge for us all. Even hearing people are going huh ? What??? We're all mumbling and have no clue what's the other is saying. It's an adjustment for us all. I was frustrated even with my hearing aid audiologist who keep talking behind his mask.

And for people in stores or people that you're never to to see again. You can say you're hard of hearing please speak louder, or gesture point they don't have to know everything about you. Even though I'm more hard of hearing I still say I'm deaf point to my ear because I have no way of hearing people what they are saying so it forces them to communicate in other ways. And most of the time it's very routine in stores like "did you get everything?" "Do you need a bag?" so I just rely on routine. And go on my way.

As for your co worker or family you could say I have a learning disability and I rely on visual clues so it's really hard to hear people with masks on. Maybe clear masks for people you work with or your family members it might help you communicate with them better?

 

[VisualistGang]

I believe if you have a disability you should be able to get notetakers and any extra help for college classes. I also think if you really do benefit from sign language you should be able to request an interpreter or a captioner. Do get retested for your condition whether it's hearing test or Auditory processing disorder etc. when you can so you have something to proof that you do have an disability and that should allow you to get the help that you need.

As for now the pandemic with the masks and all. It is definitely a challenge for us all. Even hearing people are going huh ? What??? We're all mumbling and have no clue what's the other is saying. It's an adjustment for us all. I was frustrated even with my hearing aid audiologist who keep talking behind his mask.

And for people in stores or people that you're never to to see again. You can say you're hard of hearing please speak louder, or gesture point they don't have to know everything about you. Even though I'm more hard of hearing I still say I'm deaf point to my ear because I have no way of hearing people what they are saying so it forces them to communicate in other ways. And most of the time it's very routine in stores like "did you get everything?" "Do you need a bag?" so I just rely on routine. And go on my way.

As for your co worker or family you could say I have a learning disability and I rely on visual clues so it's really hard to hear people with masks on. Maybe clear masks for people you work with or your family members it might help you communicate with them better?

Thanks for advice! It's very appreciated. I also think I should get it tested again. It's really exhausting to take note and looking on my teacher at the same time. Right now I've a few Deaf people in my class, so I've looked on their interpreter. I've learned sign language for ca. 4 months now and it's pretty ironic I understand more of what they're saying combined with power point (with text) than what my teachers are saying.

The mask are difficult. My friends and family don't have problems understanding masked people at all, and I can't understand how. I've noticed that regardless if people are masked or not, most got new habits like mumbling and looking away because of they've learned talking clearly and facing the person spreads droplets. It's a cultural thing. A new norm. Not a law and it happen unconscious. People, especially the young generation, speaks differently now than they did a couple of years ago. Maybe it's just me. Maybe it's just anecdotal. I've no idea. Sometimes I just follow the routine and are familiar with phrases like "do you need a bag?" etc.

I had the conversation with them several times and even bought clear mask to them. Some don't bother or forgets all the time regardless of how many time I remind them. In college however I sent a complaint to the school's headmaster, so she bought clear mask to my class. We're mostly on Zoom because of the pandemic, but we had a few in-person class with mask mandates. I was excluded for awhile, therefor the complaint was sent and they did something with it. Reading lips are exhausting. I can look at a class mate and understand what's being said, but in the second one of us aren't looking I can miss a lot.

I'm glad I've this forum and other online forums, so I don't feel alone and have somewhere to go. I know a large part doesn't want to hurt anyone, but have no idea how to handle the situation because of they never learned about it before and haven't experienced it before. It's still frustrating at times. I think like everything else, the beginning phase is the most difficult one. The speech comprehension and all that have worsen with time, so I'm still used to be like the average person. Maybe it changed because of circumstances. It has been noticeable ca. 1 year, so it's pretty new for me. I've earlier told my old university that my professors needed to use the microphone, but I didn't think much over it. That's 1-2 years ago. It takes time to adapt and move on when everything is new, and gradually changing.

 

[VisualistGang]

UPDATE:
I've now talked with my doctor and she sent a mail to different specialists in my country, but I got rejected.
The reasoning for them not wanting to test me is that I'm officially diagnosed with ASD, so they didn't see any reason to check me for APD and thought I had enough rights to accommodations in college (which isn't true). I suspect the state and healthcare system only want to save money or prioritize other clients more. They knows interpreters, microphones and such are very expensive and in short supply. It's known if you're officially diagnosed with something, you've rights by law.

 

[x1heavy]

My deafness was not discovered until I had grown a few years. I was losing pace with others my age and was considered a trainable (A older word for those whose mental faculties require State Insitution etc) fortunately a doctor tested my hearing and realized I am all there just cannot hear. After that, I was taken to Johns Hopkins in the late 60's early 70's where it contained a absolutely state of the art sound proof booth supported by what we call base isolation from the rest of the old hospital (Steel framed flooring in cement, shakes and viberates as a living creature as many floors of people move about etc.) in there the Audiologist used both sound tests and word tests. I got tired of the word tests however it was one of the things that was key to part of my hearing. 3 of 4 words do not work well. Present me with a sentance or situation I toss many words and zero in on what matters most. From that I try to build fast whats the spoken situation. Its alot of work. But not the only problem in hearing.

Every hearing test I try to have since those days is with a base isolated sound booth that seals off from the rest of the world and then go through the full test panel. It takes time with both sounds and words. And certain other tests against bone etc can be done in there as well. In trucking Ive had to travel from time to time to local doctors who have this equipment to generate a full audiogram when finished. I do not for example take a so called hearing test on what I call a desktop player with headphones exposed to the rest of the building and people. I know that those are certified devices for testing hearing it's not the same as a isolated purpose built soundproof. You know you are inside one when the hatch seals shut and there is a small change in air pressure combined with absolute quiet. The kind of quiet in which if you sit long enough you begin to pick up your own body sounds.

Everyone has different issues with hearing and with a complete set of tests over time in a soundproof it is not difficult to nail down where the problem is. Particularly with the advances in modern technology and power to the sounds and words available today by computer. I do miss the old analog speakers in those rooms which for their time is probably one of a few on the entire east coast at the time capable of playing a range of sounds in say Beethoven music that with sufficient power you can hear the whole thing top to bottom and really enjoy it. Not as much in a home stereo.

Columbia School for the Deaf and other schools at the time in those days would make trips into places where its a oppertunity to use the hearing, whatever it is you have with or without hearing aids. They did not possess a range of different kinds of hearing losses diagnosises (Plural) like they do today. Medicine evolves and in many cases gets better at identifying those who say that hearing is not working like it should for them personally for whatever reason.

For me when hearing does not provide enough information I shift to other senses, eyes, feel through skin (Feet on floor or seat through to the bridge in a big rig etc) or nose and taste etc. Other parts of the whole body provides what there is I can use to fill in the situation. For example the punch in the chest that comes from a bomb like explosion of the drive tire tells me it's bad and take the necessary actions to get her stopped so we can get it fixed. Or perhaps a bridge quit moving under too much weight etc. Small clues.

The most important and tiresome work I feel in trying to hear is in large crowds and picking out the ones who are not "Right" for whatever reason and work around them. And if engaged by someone talking to me I make it plain that there is nothing for them generally while keeping a good scan around. It is a little more important as a licensed carry later in life in dangerous areas far better to be avoided and not have to be there at all. Most of the time when there is too many people talking I want out and find a quiet place. They don't have a diagnosis for that and its all part of what I have to deal with in my own situation. Its not a problem generally. In dangerous areas known for gang activity I do not use sign whatsoever. NONE. If I am with a deaf going into say Baltimore Murderland etc We get all of our talking done before we go into the city. That way we don't get shot up for being mistaken throwing gang signs by those who do not know deaf language or care.

I do not require very much in digital hearing aids, I actually only get a rather basic unit that would have been top of line 25 years ago however I dislike audiologists trying to push say 6000 dollar whiz bang fancy top of line units today with all sorts of features like wireless bluetooth etc. Forget all that. Keep it simple. (Telecoil and 130Db limit vs Jet engines and artillery) and so they do not make the sale that they would like to. Thats really the only issue left in my lifetime if I am with a audiologist who happens to be more motivated by sales amount rather than fitting to hearing chart with just enough hearing aids to do the job.

 

[Barbaro]

UPDATE:
I've now talked with my doctor and she sent a mail to different specialists in my country, but I got rejected.
The reasoning for them not wanting to test me is that I'm officially diagnosed with ASD, so they didn't see any reason to check me for APD and thought I had enough rights to accommodations in college (which isn't true). I suspect the state and healthcare system only want to save money or prioritize other clients more. They knows interpreters, microphones and such are very expensive and in short supply. It's known if you're officially diagnosed with something, you've rights by law.

They're so wrong. You have to be aggressive and demand you be tested. Get a different doctor who can fight for you. Make sure you gather important documents and information on APD, so you can give it to your doctor. It will bolster your case, so you will be tested.

Yeah, prioritizing customers to save money is a joke. What country are you living in?

 

[VisualistGang]

They're so wrong. You have to be aggressive and demand you be tested. Get a different doctor who can fight for you. Make sure you gather important documents and information on APD, so you can give it to your doctor. It will bolster your case, so you will be tested.

Yeah, prioritizing customers to save money is a joke. What country are you living in?

I live in Norway. My doctor sent an email to the specialists and my doctor was fine with me getting tested. It was the specialists that didn't want to do it. It's not the doctor that can decide if you're allowed getting tested. It's the specialists and leaders.

 

[Barbaro]

I live in Norway. My doctor sent an email to the specialists and my doctor was fine with me getting tested. It was the specialists that didn't want to do it. It's not the doctor that can decide if you're allowed getting tested. It's the specialists and leaders.

Norway? Ah, that makes sense. Heard people have to wait months to see a specialist if they do not have life-threatening condition... Did you tell your doctor to pester the specialists? I suggest you ask your doctor to find a specialist who is willing to do evaluation on you. Write a personal letter if you must. Is it possible if you can afford a private insurance there in order to see a specialist quickly?

 

[HeyItsBP]

How interesting! I wonder if I too may have APD. I took a simple hearing test as well and passed “with flying colors” according to the audiologist. However during the test (mine was beeps and words and whistles), I struggled greatly and second guessed myself a lot. Why? Because even though I heard “something” I also heard the AC in the other room, the pipes rattling in the building, the WOOSH of cars passing outside, people conversing who walked past on the sidewalks, etc.

I remember once I was in a parked car in a neighborhood and along with kids laughing outside playing, cars passing, and birds, i realized I could hear someone’s iPhone alarm going off. And they were sleeping through it. For a while, actually. I often hear things like beeping from microwaves far away (at work for example), or pager batteries dying (our pagers make this obnoxious noise when they’re dying) and I stop conversations because it’s driving me nuts, saying “what IS that!” And no one else hears it. Also the hum of refrigerators! So loud!

So yes I hear fine, but I really feel there’s something not right with how my brain processes sound. I mishear things very often. Once my husband said something about “get out” and I swore he was talking about “a bad case of gout.” Sometimes, while a person is in the middle of repeating themselves, it’s like my brain suddenly goes “oh! Yeah! I know what they said now!” And I blurt out an answer and the person looks at me like I’m a loon lol.

I haven’t gone back to a hearing specialist (I have a couple more pressing medical issues I should probably focus on first), though I’ve mentioned this to my doctor and they said it’s possible I have APD. In the mean time I’ve been learning ASL for various reasons. I figure another way to communicate can’t hurt, right?

Anyway, didn’t mean to derail your thread, just sort of excited (maybe that’s the wrong term) to see someone who I can relate to.

 

[Sondha]

I live in Norway. My doctor sent an email to the specialists and my doctor was fine with me getting tested. It was the specialists that didn't want to do it. It's not the doctor that can decide if you're allowed getting tested.