update from June 2019. In December of 2018, I was diagnosed with Central Auditory Processing Disorder(CAPD). And it was not a subclinical case, in fact, I scored in the .1 percentile of several categories. This means that I, in fact, have a severe case of CAPD.
On top of that, to my surprise, the auditory diagnostic tests showed that I had mild/moderate hearing loss in both ears. Turns out my eardrums are absolutely covered in calcification.
So what’s changed for me since I wrote this post? Well, I wear hearing aids now. I also us an FM system for things like lectures and movies. Most importantly I’ve realized how much I achieved while I was an undiagnosed hard of hearing person. If I did so much then, imagine how much I can do when I can hear!
Plus, I’m learning ASL!
Have you ever seen the Charlie Brown cartoons? Whenever the kids are in school and the teacher talks, everything she says shows up as “Wah Wah Wah”. It sort of sounds like a warthog playing a trombone. They do this to signify that the kids aren’t really listening to what’s going on, but what they didn’t realize was that they’ve almost perfectly depicted my experience with Auditory Processing. Auditory Processing Disorder is what we call an autistic cousin, which is what the Autism Community defines as a disorder that shares a lot of symptoms with autism or is commonly diagnosed alongside autism. Other autistic cousins include Sensory Processing Disorder, Tourette’s Syndrome, OCD, and ADHD. Even people without the disorder can still have subclinical levels of Auditory Processing issues, and that’s me. I don’t have trouble hearing, but I do have a lot of trouble interpreting what my ears are taking in. As I’m sure you can guess, this peppers my life with many interesting challenges.
For example, phone calls are the bane of my existence. I’m not at all ashamed to say that whenever possible, I let my wife make phone calls for me, not to mention answering my phone and listening to my voicemails. The phone presents two challenges. One, I have to interpret what the other person is saying. This is extra difficult because I can’t read their lips.
If we were to scale how well I understand what a person is saying from 1-10, it would look like this: 5 points would come from auditory processing, meaning that I reliably understand about 50% of what some is saying to me. Another two points comes from lip reading. Matching the shapes people’s lips are making with the sounds coming out of their mouth really helps my comprehension. The last 3 points are context. Guessing what someone’s going to say isn’t as difficult as you’d think, and it’s easier with someone that you know well.
The context is the most variable part of the equation and can mean the difference between total understanding and spending the whole conversation hoping that I’m smiling and nodding in the right spots. I’ve learned over the years that the better I know someone, the more time I’ve spent having conversations with them, the easier the concept is to interpret. For example, my wife is one of the few people I can talk to on the phone, for two reasons, one, as you might guess, is context. I can usually predict what she’s going to say because I know her so well, the second reason, is cadence. Cadence is a pretty way of saying inflection, and it’s something that given enough time, I can memorize. There are a handful of people in my life that I have done this with, and it makes for a much better conversation. If I’m spending the whole conversation struggling to keep up, I’m not able to participate in a satisfying way. Whereas, if I know what’s going on, I can be present and really enjoy the other person’s company.
This massive difference between talking to someone you know, and talking to someone you don’t, is an incredibly important, yet little known phenomenon. At least that’s what my therapist says. I didn’t really see how it could be that important until she shared an experience she’d had while working with neurodiverse kids.
Say child with Auditory Processing issues has been moved into a new classroom. In their old classroom, they were happy and engaged, able to listen to the lesson and follow instructions. After they move to their new class, they seem like an entirely different child. They won’t respond to questions or follow instructions. They seem agitated and uninterested, and their parents are baffled because the child is acting totally normal at home. So what is the teacher to think? Maybe the child is having trouble with change or struggling to adjust to their new environment. Maybe they’ve regressed. Maybe they’re just misbehaving. But it’s none of those. The child spent a whole year learning how their old teacher spoke, and because they were used to it, they were able to listen, and pay attention, and participate. But with a new class, new teacher, kids, this kid is only getting maybe 60% of what’s going on; of course they can’t participate or follow directions!
The idea of being to hear, but still not actually hearing can be a struggle for a lot of people to understand, and while that makes sense, I think it’s something we should be actively sharing knowledge about. Living in a world that sounds like static twenty percent of the time can really affect a person’s experience. Especially for autistic people, like me, who can have both hyper and hypo sensitive hearing, being able to better interpret the world helps us live a better life. There are some early interventions and proven therapies, so there are solutions out there, especially for kids. As someone who was diagnosed in their late twenties, I’ve figured out my own solutions for things, and not to brag, but I think I’ve done a pretty good job, considering, and I’m sure other adults with auditory processing and/or autism having come up with some good stuff too. Our techniques may not appear in any textbooks, but we’ve found a way to get the most out of our lives, even if the telephones baffle us.