By Guest Blogger – Shuna Beckett
When we first met, I didn’t know a lot about Auditory Processing Disorder (APD). As she has shared her story and her passion for writing, I wanted to give her a platform to tell the world about the reality of living with APD. So here it is APD.
I might not register you talking to me, and I might not register my son crying, and I might not register that alarm going off. My mind is on other things. I can’t focus on anything else. I’m in the middle of a film playing in my head, in the middle of a story. I’m too immersed in the imagery. There’s too much stuff going on in there already. It’s impenetrable.
And yet, at other times, I get distracted if there’s another noise in the room, and I can’t focus. I have to wear earplugs at night. I know it doesn’t make sense. I don’t even understand it myself. I guess it depends exactly where my mind’s at. Sometimes, noises are too quiet (I have a hearing impairment, too), but sometimes everything feels deafeningly loud.
Sometimes, I might interrupt your conversation because I don’t register a conversation is going on.
Sometimes, I might take up more air space with my stories or anecdotes because it’s easier than following other people’s and less tiring to talk than to listen. I don’t mean to dominate. I try extra hard to be mindful and aware of the situations where, to others, it might come naturally?
Sometimes, the fog sets in, and I forget what I’m saying halfway through.
At other times, I can’t get my words out. I’m searching for a word in the tunnels of my mind, but it’s gone. Names of famous people, names of people I know, names of places, names of songs, as well as day-to-day words. Witty comments come to me hours later. I often plan what I’m going to say ahead of time. I can’t express myself properly in an argument or debate. And if my emotions are triggered, my thinking brain shuts down, I get confused, I am like a small child again. I might implode. I might explode.
Even when writing (and I’m a writer), I can’t find the right words – simple, obvious, words. I defy the Writers’ Code and reach for a thesaurus more often that I care to admit.
I can’t always follow instructions or new information or conversations on a subject I know nothing about, or where I don’t understand the context. What am I missing? What am I forgetting? What was I supposed to do again? What was I supposed to say? What did you ask of me? And there’s the fog again.
Sometimes things sink in after about a minute. Often more. I very probably won’t laugh at your joke till way afterwards, if I get it at all. I can’t follow films. And I might recognise a song that’s been playing on the radio or at a gig half a minute after it’s started and everyone else has been singing along. And I never remember the lyrics.
It can take me hours to process a whole conversation; hours before I realise that somebody might have actually insulted me or treated me unfairly. So, quite often, I can’t deal with it in the moment. I sometimes end up writing an email with all the things I should have said, in a far more eloquent way than I could have communicated verbally. And I think people find that quite odd, or perhaps they think I’m scared of confrontation, because I didn’t say it to their faces.
Sometimes, things seem to go in but don’t stick…
I rarely remember facts or information, unless I see them written down. I don’t do audiobooks or podcasts and webinars behind screens aren’t much better if there are no visuals. Even if I manage to listen long enough for it to go in, I won’t remember anything. Not unless I take copious amounts of notes.
I’m sorry I forgot what you said about your sick Aunt. About your holiday. About that thing you told me that happened to you when you were a kid. I know it’s all important stuff. I listened. I really did. But it didn’t stick. It went in, but not quite far enough. It didn’t reach the depths of my understanding. I think that part of my brain that’s supposed to make other people’s words sink in is missing. While other parts of my memory – the bits that remember things that affect or have happened to me – thrive like a warm incubator. Sometimes too much. Don’t ask me why. It doesn’t mean I’m a bad friend or I don’t care. I am trying.
It’s just all very…abstract. That’s how the verbal world feels at times. Abstract.
Let me see it. Show it to me. Let me have a go. Or if not, describe it to me so I can see it in my mind. Really see it. Write it down. Let me write it down. Give me pictures, a story. Something to hold onto. Let it reach my emotions – cos that part of my brain is in overdrive.
Sometimes, everything feels like an uphill struggle. It’s all a muddle in my brain. I need to write it down. Make a list. Make another list. Get it in an order. Make it make sense.
I hear in pictures. Please be patient with me. I need to visualise or imagine what you’re saying: The words, the numbers, the things you’re describing.
I read in pictures. The more I can visualise, the easier it is. A fictional novel full of description is way easier than an abstract academic text, for example. But either way, I still read slowly and can get easily distracted.
I write pictorially. Please understand if I write you a really long message, an email or letter. I’m trying to see the things I’m writing about.
I explain pictorially. I am trying to describe things the way I see them in my mind.
I can’t do two things at once. I can’t have a conversation with you while I’m doing something else or I’ll delete a whole computer file, put the salt in the tea, the sugar in the stew, burn myself, take a wrong turning in the car – or worse. It’s one thing or the other. Or something’s going to suffer.
And it’s usually me.
APD affects organisational skills too. Logistics? Forget it. I feel I must come across as stupid at times, bereft of common sense. Sometimes (and particularly before my APD diagnosis, aged 41), I feel stupid. But I’m not stupid. It just takes a while to work things out. Give me a day – some time and some space on my own – and I’ll come back with a perfect plan. Ask me on the spot and I might crumble.
Groups are especially hard. When there is more than one person talking at once, or if the conversation flits from one person to the next, or people change the subject rapidly. It takes time to register each person, really grasp what they say, by which point the next person is speaking! And I’m lost again.
I get easily confused in social settings. More and more, I feel overwhelmed and flustered. I’ve always loved dancing and gigs and music, but now trying to socialise where there is music, or even too many people and too much noise, disorientate me. Sensory overload. I can’t get my words out properly. I can’t join in conversations. I’m sure people think I’m behaving weirdly.
And after one of those rare evenings out with friends or meeting strangers, I lie in bed processing it all night. I can’t sleep. I’m trying to make sense of it. Remember what I said and whether it was the right or the wrong thing. Did I rant? Did I come across as weird or stupid?
I often find myself practising the most basic or mundane of interactions in my head, even to a colleague or a friend. It’s not because I’m particularly nervous – I just know it won’t come out right otherwise. Then I might replay it in my head afterwards. Have I said something wrong? Maybe I’ve upset them? It’s like I don’t have full control over how to manage conversations – or at least my part in them.
And all this can make me feel unsure of myself and doubt myself.
APD makes me feel excluded from the world sometimes, heavily compounded by my hearing impairment. In fact, I don’t know which is worse! It’s like they’re both teaming up on me.
And then…when it’s at its worst, when I’m a bit stressed out in general or nervous (it might just be that I know I have to talk in a big group of people I don’t know), in that moment, nothing goes in. Words dissolve into each other. My head goes mushy and cloudy, like muddy water. There’s too much blood pumping in and out. It starts to throb and swell till it feels twice its size and detached from my body, like it’s about to explode. I feel like I’m trapped inside it. It tingles like it’s made of electricity. I get ringing in my ears. I can’t think straight. And then I miss what people say. Their words are slippery like tea, I can’t hold onto them. They go in my ears, but then get scrambled by my brain. One big tangle. ‘Sorry what?’ I swallow as anxiety fizzes. I nod and smile and fill in the gaps, I read their faces, their bodies, I try to work it out. But it tires me. I have to concentrate so hard that I then zone out. I don’t understand anything anymore. It just becomes noise. Words are words with no meaning, bouncing around an echo chamber in my brain.
All my senses have had enough then. Too much light, too much colour, too many people. Everything’s a blur. Sometimes, when there’s too much happening, I feel like I don’t have a clue what’s going on around me. I’m stressed. My heart rate rises. Sometimes, I say the wrong thing. I make a joke. I try to mask it. Bury it deep down. But that just makes me want to cry. I try really really hard but sometimes, in the end, I just retreat inside myself.
Somehow, I seem to manage. Years of practice and finding strategies around things. But also, I’m massively masking. Faking. I’m cool. Just a bit ‘quirky.’
And that leaves me exhausted. I need a lie down.
Then add to that any problems or stresses in life, plus tiredness (and, as a single, working, studying mum, I am always tired!), which really aggravate it because your concentration levels and understanding are the first things to go.
And the thing is you probably have no idea by looking at me that any of this is happening in my head, apart from a few little quirks or ‘endearing’ – or annoying – habits. It’s such a hidden disorder and we get so good at hiding it. I am still learning about my own brain.
Somebody with APD once described her ability to read body language as a superpower. We rely so heavily on reading every gesture, movement, and facial expression in order to get clues as to what someone is talking about (so online meetings are a nightmare for me but hey, we’re in 2023, I’d better get used to it!). While it is hard to read certain situations and understand verbal clues, my perceptive abilities are often in overdrive. My empathy is in overdrive. And sometimes this is too much. It makes me oversensitive, too atuned to the little things, to the energy in a room, to the signals someone is giving off. And this has its own set of problems…
And I wonder how much APD has played a part in all the broken relationships I have had in my life…
- APD has a lot of crossovers with dyslexia and autism. They say that all autistic people have APD and a lot of people with APD are autistic, but not all. But there are some shared characteristics. And with regards to dyslexia, I have no problem reading or writing, but my brain might work in a similar way.
To find out more about Shuna check out www.squarecirclearts.co.uk