Unmasking Autism Diary #16: I Can't Hear You

Read now (8 mins) | Auditory Processing Disorder: from inside Angela's Autistic mind.

August 31, 2023

Dear Diary,

The other day I got an email confirming an appointment I’d scheduled but couldn’t make. I wrote back and said, “I can no longer make that time but do you have availability next week? I’m free any time and date.”

They wrote back and said, “We have canceled your appointment but we do have availability next week, please call the office to reschedule.”

My body filled with dread. Why did I have to call the office? I felt myself kick into Autistic defensive mode. 

“Thanks!” I wrote back. “Can we just reschedule over email? Suggest literally any day and time next week.”

“It would be best to reschedule over the phone since time slots are being taken up rapidly,” she replied, almost immediately dismissing my request. 

Fury stirred in my indignant soul.

Well if time slots are being taking up rapidly, can you just assign me one? How does me calling change that? Why can’t you just put me down for a new date and time like I asked and then email me that date and time?

I played out the phone call. I rehearsed the phone call. I tried to get up the emotional fortitude to make the phone call…The task stayed on my list until the entire week was over. Mostly, I pushed it aside and didn’t think about it, but when I’d look at my to do list, the dread would return.

Was I just going to ghost them? Was calling the office easy for some people? It must be. I had a hunch this was one of those “social communication deficits” Autistic people are always navigating. (I think of it as a difference, not a deficit, but tomato/tomahto, eh?).

I don’t always hate the phone—I love talking to my sister. What was it about customer service calls in particular that filled me with so much dread? 

* It was the awkwardness. 
* The tripping over each other. 
* Not knowing when to talk. 
* Always seeming to end up in a weird fight explaining myself. 
* The frequency of my need to argue with something they said that was inaccurate or not nuanced enough. 
* Never knowing how much information was too much or not enough. 
* The compounded trauma of three decades of calls like this not going well. 
* The shame of feeling like a phone call to reschedule an appointment should be easy. 

I have a 7-figure business. I have a PhD. I just wrote my 8th book. How can a phone call be hard? Why can’t this time, be the time I get it right?

The hope of, ‘I have it figured out,’ is contrasted with the fear of failing at this simple task AGAIN.

I am paralyzed.

Should I try again and risk failing again?...Or admit defeat? Or just hide from this bantam monster chasing me?

I want to get this right, but what will make this time different? What are the odds I will be embarrassed/embarrass myself again?
Statistically pretty high. 
I rehearse again. 

* What if there is background noise when I call?
* What if the person is rushed or between calls, and I feel like I’m bothering them?
* What if the person has an accent that I can’t understand? (Wait, is that racist to worry about? Shit. I can’t think that.)
* What if the phone line is crackling?
* What if the call drops? And then what if we both call each other back and get voicemail? Are we both supposed to call back? What’s the protocol? Should I google that? 

This is just a little phone call why is it so hard?

I feel my body moving into a state of disregulation. When this happens it means days of gastro problems and tinnitus. I can feel the ringing in my ears pick up and the gurgling in my stomach. When this happens it also means I’m more prone to lashing out or being rude to the people I love. When this happens, it can be hard for me to talk.

I know the key to managing the downsides of being Autistic is to self-advocate for accommodations.
Know what I need. Ask for it.
Especially if it’s free and easily available to give.

I don’t want to make this phone call. I don’t want to keep stressing about making this phone call.

I wrote back: “I know you would like me to call, but here is my challenge with that: I have an auditory processing condition.  Can we please reschedule this via email? I appreciate the accommodation. I need to reschedule for ANYTIME between August 20 and 23. You can pick the day and time and just let me know.”

Wait…What did I type? I have an auditory processing disorder? Why did I type that? Why did I know that? Do I know that? No one has diagnosed me with that. I didn’t know why I typed: “I have an auditory processing disorder.”

I felt guilty for lying.

Did I say that to get my way? Was I being manipulative? An imposter? Taking something away from people with actual auditory processing disorders?

I googled auditory processing disorders.

• Common among Autistic people. Though not me…right?

• Common among people with lots of ear problems, especially chronic ear infections in childhood. Earaches defined my childhood. Could this be me?

• Common among people with a calcified stapes. Which I was diagnosed with. Hmmm. I think this IS me.

• Signs of auditory processing disorder: hates phones and bars. Oh yeah, this is me.

I have always called myself phonophobic. If you call, my voicemail is full. That’s not an accident. It’s a more socially acceptable version of my old voicemail which said “Hi. This is Angela. Don’t leave a message because I won’t listen to it, but feel free to text.” Now, people just figure it out—it’s not because I’m busy.

I’ve always hated bars, but I love theatre and concerts. I rarely drink and bars make me fall asleep. I did not see these two things as connected to each other or anything else. People have preferences. Bars and phones just weren’t mine.

But what if this wasn’t a preference at all? What if it was a result of an auditory processing disorder? Every symptom hit. Huh! 

My guilt slipped away. I asked for an accommodation, and it’s okay. It’s okay to take up the space you need. The stomach gurgling settled.

And then the reply came:

“Hello,Thanks for reaching out! We will reschedule you on August 21 at 2pm and send you an email with his new date and time. Thanks.”

😭

So…That was easier than expected.

I read more.

I started to see how I didn’t experience words on the phone or in a bar in the same way as words from the stage or over a cup of coffee or even on the phone with my sister.

That night I was watching a TV show I really like. Might have been The Orville—can’t remember. But, there was a guest character and whenever this guy talked—no matter how loud I turned it up—I couldn’t understand him. I kept saying something like, “The timber of his voice is just blocked out for me.” My husband was clearly not having the same experience and getting very frustrated with me asking, “Can you understand him?”

Yes. Yes he could.

There is another show we have watched that I love, but I’ve noticed that when there are guests with certain accents, I can’t understand them (sorry to the fine people of Lancashire and Tyneside). I either tune out or get insanely irritable. I got a sudden flash of how we are told dyslexic people see words on a page: blurry, inverted, missing in parts. That is exactly how I hear certain pitches, in bars, on the phone, when the sound is layered, in movie theatres with Dolby, on podcasts with crackly audio, and on TV shows when someone has an accent! It sounds like those dyslexia reading images look.

I DO have an auditory processing disorder!

(I also have a doctor's appointment now scheduled with my ENT of 25+ years to make it official. But when you know, you know).

Last night, my husband said the name of a TV show he has said like 100 times. I know the name of this show, but it has a strange name and a strange syntax and it just doesn’t stay in my head. It’s not grammatically correct. Something is “wrong” with this title.

Every time he says it, I say, “What?”

And he gets pissed.

Like I am an old lady refusing to put her hearing aids in or just an incredibly clueless person or something. How do I not know the name of this show he has said 100 times?

Is this a part of my auditory processing disorder? I wondered. Why do I say, “What?” every time he says the show’s name?

I replayed what happened in my head when he says the name—it looked like the way dyslexics see writing: Parts of letters were missing. It was blurry. It was wavy. It was familiar but I couldn’t grab it. It was illusive.

When I read a page…This is gonna sound weird…But, I don’t really read sentences exactly. I always tell people “I eat the page.” I look at all the words on the whole page at one time and logically just know/guess how they got together into sentences.

Unless it’s dense philosophy, I just consume the words and my brain knows how to put them in order and make meaning. I know it’s magic. I’m super grateful. (Also why I’m so good at my job. Also Autism).

But with audio words, my brain can’t hold as much content or make meaning as fast. So I rely on context. If we are at the airport and you say, “What time is the flight boarding?” I am sort of expecting that question, so even with background noise, the curvy, blurry audio letters make sense because I add meaning. But if we are at the airport and out of the blue you say, “Do you want a Paris-Brest from the cafe?” I am not going to be able to decode that fast enough.

Wait? Are we going to Paris? Is this something about someone else’s flight to Paris?Why are we talking about breasts? Did someone say cafe? Want? What do I want? Do I want something? Is the flight boarding? PANIC!

Blurry. Wavy. Incomplete. Illusive.

I can’t grab the meaning.

And I will say, “What?”

Not because I need hearing aids, but because my brain was not in French-pastry-zone. That same sentence, while watching The Great British Bake-off, might make perfect sense to my ears.

Anyway, all of this is to say, get to know your brain and ask for the accommodations you need. Neurodivergent folks will need more accommodations because they deviate from what is most common or prevalent, but we are a diverse species and everyone has special needs. When you know where you need accommodations, you can often just ask for them and it’s no big deal.

I’m going to ask at all my doctors that a note be made in my file to schedule appointments through email because I have an auditory processing disorder. I’m sure sometimes they won’t be able to accommodate, but I bet a lot of the time it will be no big deal. I’ll be calmer and more regulated and it will be an all round win-win.

I asked my husband for an accommodation too. I asked that when I say, “What?” that he first assume it’s an auditory processing issue, not me being insolent. We agreed that I would try to use a code word when I was able to identify it was auditory processing (because sometimes I am just an asshole and I’m not paying enough attention). He agreed to try not to take out his anxious attachment style on me when I didn’t hear something right.

It wasn’t an easy conversation.

I felt like I was being a victim and I should just “listen harder.” Maybe I can change my thoughts about my hearing and magically hear better! I wanted to make my needs smaller—shrink myself. Conform. Try and be “normal.”

I think he might have felt I was asking for extra credit that I didn’t deserve. I had to be clear in my heart (I wasn’t asking for too much), and clear about where I was also just a shitty listener.

Late-in-life diagnosis saves lives and relationships. It’s not an easy journey but it’s so worth it.

***

The Dear Diary Project is a public journaling project where I’m publicly sharing my diary entries as part of my annual goals. No harm is intended by these posts. My goal is to gain clarity for myself and hopefully help others, especially autistic adults, who are trying to make sense of the communications challenges we face.

“Masking is a common coping mechanism in which Autistic people hide their identifiably Autistic traits in order to fit in with societal norms, adopting a superficial personality at the expense of their mental health. This can include suppressing harmless stims, papering over communication challenges by presenting as unassuming and mild-mannered, and forcing themselves into situations that cause severe anxiety, all so they aren’t seen as needy or ‘odd.’”
—Unmasking Autism, Dr. Devon Price

*Background note: Most people only have a vague (often, highly stereotyped) version of autism in their minds and believe that autistic children need (traumatic) ABA therapy to "overcome" their disability and appear "normal."  After receiving an autism diagnosis in her thirties, Dr. Angela Lauria realized that she too had been mostly unaware of what it means to be Autistic.  Like so many people, she started her journey by first gathering information and resources from the omnipresent (and problematic) Autism Speaks, but eventually moved away from the 'autism community' in favor of the 'Autistic community,' where she found kinship with other Autistic individuals and learned to let go of pathologizing language like 'autism spectrum disorder' and 'Asperger's Syndrome.'  This autism blog (and her autism podcast, "The Autistic Culture Podcast") is meant to share her lived-experience insights to support others on a similar journey of diagnosis, understanding, and community. Embrace Autism--differences are not deficits.