Monday, August 9, 2021

Two Autistics' Experiences With Low-Gain Hearing Aids For Auditory Processing Problems

Photo of a pair of blue insertable low-gain hearing aids lying on a dark brown wood-grain surface.
Photo courtesy Naomi M.
[image: Photo of a pair of blue insertable low-gain hearing aids 
lying on a dark brown wood-grain surface.]

Naomi M. and endever*
anotherqueerautistic.wordpress.com

Summary/tl;dr

  • Specially programmed low-gain hearing aids can help people with auditory processing problems, even when they don’t have other difficulty hearing. They work by enhancing the sounds that help people understand spoken words. They can also make sounds less painful.
  • Auditory processing problems make it difficult to understand spoken words, especially when there's background noise. It's like your brain has difficulty hearing correctly. Many autistic people have auditory processing problems, as do some non-autistic people.
  • The authors of this post both tried specially programmed hearing aids to help with auditory processing issues and with sound sensitivity. We have found them life-changing.
  • In this post, we give background on auditory processing issues and hearing aids, and also share our personal experiences.

Important Note

This article describes our experiences as two specific people with auditory processing difficulties who are otherwise hearing. Our experiences may not generalize to any other individual person with auditory processing difficulties. We also caution readers against generalizing our experiences with hearing aids to those of d/Deaf/hard-of-hearing people, including those who also have an auditory processing disorder. Although we sometimes have overlapping experiences, there are ways our experiences often differ, and we can’t speak for other people. 

The authors of this post both strongly believe that d/Deaf/hard-of-hearing people and/or disabled people deserve to be able to choose which accessibility options we use, and when. For us, those include hearing aids, but this is not true of everyone. 

What are auditory processing issues?

Auditory processing refers to how our brains make sense of the sounds we hear. When someone’s brain can’t effectively process sounds, it can make it very difficult to understand spoken words, especially when there’s background noise!

Auditory processing disorders are more common in some neurodivergent people—for example, autistic people—although non-autistic people can have auditory processing disorders too. 

Some people with auditory processing disorders are also d/Deaf or hard-of-hearing. Others have normal hearing, but because of auditory processing difficulties, have experiences that overlap with those of d/Deaf/hard-of-hearing people. (You can read some discussion in this Twitter thread on overlap between the APD and hard-of-hearing communities.)

Standard hearing tests rarely detect auditory processing problems. They check for ability to hear words in a quiet environment but usually don’t check for difficulty hearing sentences in background noise, understanding rapid speech, or other tasks that are difficult for people with auditory processing issues.

It’s difficult to find providers who know how to test for auditory processing disorders effectively, and many people with diagnosable auditory processing problems (which include many autistic people) never receive a diagnosis or accommodations. In this article, we use “auditory processing disorder” and “auditory processing issues / problems / difficulties” interchangeably, partially for that reason.

Auditory processing issues impact interactions at work, school, home, and out in the community. Understanding other people is harder and more tiring, and it takes up time and energy that we need to come up with responses at the speed others expect. 

Our Experiences With Auditory Processing Issues

endever*: Before hearing aids I was missing a lot of pieces of conversations with friends, especially in background noise. I avoided any media without captions, and had trouble following audiobooks and using the phone. 

Another huge issue for me was the fatigue of auditory processing and the difficulty of focusing on auditory input, even in circumstances when I did hear someone correctly.

Naomi: Auditory processing wears me down. It takes longer, and it’s difficult for me to participate in conversations—especially when there’s background noise—because processing takes up time I need to plan my response. It can be very fatiguing. 

I also experience auditory pain, especially in response to some high frequencies, and find multiple or complex sounds disorienting (simultaneous conversations, busy spaces). 

Why Hearing Aids? Don’t They Just Make Sounds Louder?

Most hearing aids do! However, low-gain hearing aids can be used to enhance the sounds that make words easier to distinguish—without making EVERYTHING louder. They are regular hearing aids that are specially programmed by a knowledgeable audiologist to enhance speech while making loud sounds quieter and reducing background noise. 

Low-gain hearing aids can also be used to help with issues such as sound sensitivity, tinnitus, and misophonia (where some sounds, like chewing, are aversive/painful). 

If you’re looking into low-gain hearing aids, confirm that any audiologist you plan to see has experience with programming low-gain hearing aids for auditory processing difficulties. The hearing aids need to be carefully programmed to support an individual’s auditory processing profile. Many audiologists are unfamiliar with using low-gain hearing aids for auditory processing difficulties and don’t have relevant experience (although there has been some published research). 

Do They Really Help? What With?

Our audiologist says most of her clients report benefit from using low-gain hearing aids to support auditory processing. Both authors of this post found they helped significantly in multiple areas, including in-person spoken conversations, videoconferences, phone calls, and media, as well as helping with auditory pain/sensitivity.

Conversations

endever*: One of the first things I noticed was a very strong sensation that I was somehow magically hearing people say things before my eyes saw their mouths make the right movements—I think I hadn’t previously realized the extent to which I was previously processing on a delay. Another thing I saw early on was that S-spectrum sounds were more noticeable than before, which makes sense as it’s those sounds I was in speech therapy for

Going out to brunch with my friends before quarantine was markedly improved by using the hearing aids’ directional/”blinders” setting. I was acutely aware that it was taking less effort than usual to clue into my friends’ voices. 

Now in a day treatment program, I’m finding that distinguishing words over lower background noise is easier than it used to be, although when I am between multiple conversations competing at equal volumes it is still difficult to focus on one voice at a time. I attribute a large portion of my success at the program (in terms of tolerating the long days, coping with little alone time, and not ending up in meltdown/shutdown) to the fact that auditory processing takes less cognitive effort than it would have a couple years ago.

Naomi: They absolutely help! Talking with other people was immediately much easier and less tiring. In a quiet room or on a relatively quiet walk outside, it feels like spoken words now go into my brain with the same sense of ease as written words do. They’re not perfect in all circumstances, and I still have difficulty hearing people clearly in areas with bad acoustics. 

Some sounds were tinny at first, but not disorienting or uncomfortable. The tinniness went away over a few weeks as my brain adjusted. 

Auditory Pain/Sensitivity

Sufficiently high-tech hearing aids can help with pain and sensitivity in three ways. They can compress loudness, by making some loud sounds quieter. If specific frequencies are painful, they can compress those frequencies, raising or lowering their pitch. They can also use pink noise (related to white noise) to help desensitize hearing over time and/or mask tinnitus. 

endever*: They help me with background noise both on normal setting and on pink noise. On normal they seem to filter it out somewhat. It is hard to describe how the filtering feels in the moment, but basically I just feel less aggravated by the end of the day when I’ve been wearing my hearing aids

As for pink noise, transit has been going much better now that I have hearing aids. Pink noise doesn’t feel quite like relief like earplugs do, but the situation doesn’t feel distressing the way it used to either. I also use pink noise for things like studying in an environment that is already relatively quiet (but perhaps with annoying mini-sounds like the refrigerator humming).

Naomi: They make a huge difference for my auditory pain. It’s been worse in the past, but I didn’t realize how painful sounds still were until they hurt less. My hearing aids both make loud sounds less painful and compress specific high frequencies that hurt, like crackling chip bags. I used to wear noise-canceling headphones most of the time; now I rarely do.

One major and surprising advantage: I automatically tune out some kinds of background noise now, like window fans or people talking quietly in the hall. 

Videoconferences and Phone Calls

endever*: I definitely don’t miss what people are saying in video calls as much as I used to! At this point it’s easier to rely on the hearing aids than on autocaptions (the latter tends to throw me completely off when they get even a little bit wrong). I still think many Zoom meetings could be emails, but I’m not as annoyed by them anymore.

I used to have trouble hearing voicemails, but that’s going better now. I still avoid picking up the phone when it rings spontaneously even if I might be able to speak just then, but I’m willing to do pre-set phone appointments now if IP text relay isn’t working. (I usually use text relay especially for expressive communication, but with hearing aids I can just use my communication device on speakerphone.)

Naomi: My post-videochat fatigue and irritation have dropped immensely. I still have difficulty understanding what people are saying sometimes, and I still turn on autocaptioning when available, but I no longer have an ongoing sensation of "why are you doing this to me and could we just get this over with as fast as possible," and I’m not wiped out afterward.

Phone calls are also easier. I usually connect my hearing aids to my phone using bluetooth, but can take calls without connecting them, although the phone squishes my ear against the hearing aid a little. 

Media (Music, TV, Etc.)

endever*: The first thing that stood out to me about this was that I actually understand unfamiliar lyrics now! It’s completely mind-boggling; music can bring sheer joy. 

My first reaction to listening to audiobooks via Bluetooth was that it feels like the narrator is speaking into my brain itself whereas usually there’s a sensation of distance. 

For TV shows I notice it takes less attention to take in more content—even when I’m distracted on mental tangents or simultaneously skimming social media, when I do clue back in I haven’t missed as much of the story. I now often don’t notice whether captions are turned on or not, it just doesn’t occur to me

After having done several experiments of watching shows with hearing aids and then without them, the biggest difference is always the immediacy (both temporally and spatially) of the dialogue. Before the trial I had no idea my brain was lagging behind so much.

Naomi: Music sounds good, and it’s easier to make out lyrics. Movies and television are easier to focus on, and more interesting to watch

I also watch more YouTube videos now, and listen to podcasts. I don’t find myself rapidly zoning out anymore—I can listen, pay attention, and summarize the information afterward. I previously thought my auditory attention problems were ADHD-related (I have ADHD as well) but I now think auditory processing difficulties play a big role.

However, I do still want (and often need) handouts available to accompany lectures, and still prefer to get most information in written format

Are The Hearing Aids Comfortable to Wear?

endever*: Mine are physically comfortable, although the pile-up of glasses/hearing aids/mask straps has been a bit much. I sometimes wear light fabric covers on my aids that are attached to cords that clip to my shirt if I’m worried about losing them.

I also like to decorate mine! I know the relative invisibility is a pro for many, but I happily add colorful tube coils and so on in the name of cyborg pride. 

Naomi: I find my hearing aids physically comfortable to the point of being unnoticeable, even with glasses. They’re also not particularly visible, especially with my hair down. 

Are Hearing Aids for Auditory Processing Issues Expensive?

Both authors of this post tried hearing aids for auditory processing issues via a nearly-free (postage + damage deposit) six-week trial offered by an audiologist who did not require a previous auditory processing disorder diagnosis. She programmed the hearing aids remotely via a device that plugs into a Windows computer. We both ultimately chose to purchase permanent hearing aids. 

Permanent hearing aids are expensive. The high-tech ones needed for auditory processing issues are miniature computers, and run $5000-8000 including aftercare (for both ears). In the U.S., insurance rarely covers low-gain hearing aids like this. The audiology office we worked with found only about 15-20% of insurances would provide any reimbursement at all. 

This isn’t unique to hearing aids for auditory processing issues. Many d/Deaf/hard-of-hearing folks who use hearing aids face similar financial barriers. 

This is systemic audism. Everyone with hearing differences deserves appropriate support, including assistive technology if they choose

Auditory processing issues can affect quality of life, school success, employment, and mental health. We hope that in the future insurance companies become more willing to cover effective supports like low-gain hearing aids, instead of more expensive, ineffective treatments like abusive ABA therapy for autistic children.

Summary

endever*: All the changes I’ve noticed now that I have hearing aids have made them absolutely worthwhile for me to invest in. They’ll need replacing eventually, but now that I know how much they help I can prioritize saving ahead in my low-income budget. 

Naomi: Overall, the hearing aids have been hugely helpful. It's easier to participate in conversations and less tiring. I no longer feel like someone's spraying me with a hose full of confusion and painful sounds—I’m just interacting! It’s also much easier to be around background noise

Caveats

We want to close with two important caveats. 

First, hearing aids shouldn’t be used as a reason to deny accommodations like captions, information presented in written format, a quiet place to study or work, or respecting someone’s request to face them while speaking. Hearing aids help us hugely, but aren’t perfect and aren’t accessible to many people.

Second, if someone doesn’t want to wear hearing aids, they shouldn’t be made to—even if they’re children, even if it’s inconvenient for others, even if their reason for not wanting to wear them is cosmetic, even if they’re autistic or intellectually disabled or otherwise disabled, even if they’re not able to refuse consent out loud or in writing and can only decline to wear hearing aids by taking them off.

It can be worth checking whether physical or auditory discomfort could be causing problems—but someone who doesn’t want to investigate that shouldn’t be forced to either. It’s THEIR body.