CAPD: When You Hear But Don’t Understand
Anyone else get like this?
I hear just fine. In fact, I hear things that most people miss. Flourescent lights, the refrigerator cycling on and off, fans, AC’s, the neighbor’s TV, etc. Hearing tests — the kind when you indicate when you hear a tone — show that my hearing is above average, especially for my age. So why do I struggle to understand speech?
It’s not about age. I’ve had this problem all my life. My parents and teachers were baffled because my hearing tested just fine but I was always missing something when someone spoke to me. They said I just need to pay attention more. They said I’m stubborn, maybe even arrogant. Just a brat trying to be difficult for attention’s sake. They tried to shame and beat and pray it out of me.
After all — I remarked on the flourescent lights or the fan or the neighbor’s radio bothering me so there’s nothing wrong with my hearing, right?
A few years ago — around the time I was diagnosed Level 1 Autistic (formerly known as Asperger’s Syndrome), I found out about Central Auditory Processing Disorder (CAPD).
There’s nothing wrong with the ears — it’s a brain glitch.
It’s pretty common in autistic folks as well as in our close blood relatives. It’s like struggling to make sense of speech in a language that one understands just a bit. Think: a visitor to another country trying to get by with the little bit of a foreign language that they learned in a 6-week adult ed class.
When I found out about CAPD, I saw an ENT doctor at the county health clinic. She agreed that I probably have this condition. She said that to get an official diagnosis I would have to see an audiologist who specializes in this disorder, and that it would be a lengthy and expensive process. And that there was little point to getting an official diagnosis at my age; there’s new therapies that can help children sometimes — but not adults. So if I just wanted to know for my peace of mind, her informal diagnosis was as good as any, she said.
I was very happy to find out that I have CAPD. It means I’m not a bad person.
I’ve found that it’s not a good idea to say “What?” That annoys people and they make anger signals and yell.
Please don’t yell. Yelling just makes everything worse. I can hear the sounds coming out of your mouth just fine, it’s just that it takes some time and brain-work to translate these sounds into meaning.
Sometimes by the time a person repeats themselves in a louder tone and gotten themselves all worked up, I’ve figured out what they said. Sometimes not.
So I no longer say “What?” I don’t want people getting mad and yelling at me. Instead, I repeat the nonsense syllables that I just heard come out of their mouth. I put a rising tone at the end, as if asking a question. I do this while making a visible effort to see their face. Often that means contorting myself a bit.
This usually prompts them to do what I need — look at me and speak clearly.
If that doesn’t work, I say,
“I am hard of hearing. Yelling doesn’t help. Please look at me and speak clearly when you talk to me.”
That helps, usually.
But it didn’t help this morning when I made my weekly errand to the neighborhood food pantry to pick up a bag of food for my chronically ill and homebound neighbors. The person who made up my bag kept looking down or turning her back to me as she spoke. I said I’m hard of hearing and please look at me. Said it several times. Said it while crouching sideways so I could see her mouth. She still wouldn’t look at me.
We were both getting annoyed so I reminded myself that she is a pure soul acting in a role, just like I am.
Getting mad at her makes no more sense than getting mad at actress Imelda Staunto for playing that obnoxious character Dolores Umbridge in “Harry Potter and the Order of the Phoenix.”
It occured to me that she looks Indigenous or Chicano and I look white. Maybe she’s been taught not to look at white people in order to avoid appearing “uppity.” Her tone and body language became harsh and I began to feel that she was being rude. So I reminded myself:
Just like it’s impossible for a BIPOC person to be racist against white people, it’s impossible for a BIPOC person to be rude to a white person.
Her harsh-sounding tone and the way she was slamming things around was pretty unnerving. But it was nothing compared to what people who look like me have done to people who look like her for hundreds of years, even to this day.
So I took a few slow deep breaths and silently offered the Metta Prayer. Then when I got home I made a sheet of these cards (shown at the top of this article) to keep in my wallet for next time something like this happens — and it will. At the end of this article, I put the sheet of cards for anyone who would like to print out for your own use.
Some people say I ought to let go of my vanity and get hearing aids. After all, I’m 66. We all get old eventually, if we’re lucky. But hearing aids work with ear problems. CAPD is not in the ears, it’s in the brain.
There’s an upside to CAPD. It means that I have to listen to people carefully, with undivided attention. Most people — except those in positions of great power — never get anyone to listen to them like that. So when I listen to them with my whole being, I can help them to feel Seen and Heard. And that’s a good thing.
Readers: Anyone else living with CAPD? What are your experiences? How do you deal with it?
